{"paper_id":"24b4806d-fb78-4a87-a7bf-e966ae275858","body_text":"“Am I ‘Normal’?”: Adolescents’ Awareness \nand Experiences of Endometriosis and \nMenstruation \n \nAmie Randhawa \n \nA thesis submitted in partial fulfilment of the requirements of Birmingham City University for the \ndegree of Doctor of Philosophy. \n \nThe Faculty of Health, Education, and Life Sciences \n \nNovember 2022 \n\n\ni \n \nAcknowledgements \nThe completion of this thesis was dependent on the support of so many people. Firstly, I want to \nexpress gratitude to my research participants. I want to thank the many schoolgirls who completed \nmy survey, and the teachers/school staff who enabled access, and facilitated data collection. To the \nadolescents and young women with endometriosis who took part in the interviews, I wish to  say a \nhuge thank you. You not only gave up your time, but you shared your personal stories with me, and I \nhope I have done them justice in writing this thesis. Thank you also to Endometriosis UK, who enabled \naccess to such participants, by promoting my research through your support platforms. \nI will forever be indebted to my supervisors, who have supported me at every step of the way. You’ve \nhad my back through it all , the  laughter, and the tears, and I will be eternally grateful that you \nencouraged me to keep going, especially when I doubted myself.  \nTo my f ellow PhD Students , particularly those who resided  with me  in the ‘ Attic’ for most of  the \njourney. Thank you for supporting me, reading my work, making me laugh, and listening to me rant. I \nstarted the journey with you, but you’ve all graduated now, and seeing your successes have further \nhelped to spur me on. Well done to you all! \nI am very lucky to have some amazing friends, who over the last 6 years, have listened to me talk about \nendometriosis and periods on probably way too regular an occasion. Thank you so much for taking an \ninterest in my research, and for encouraging me along the way. The emotional support you have \nprovided has been invaluable (and so has the wine). \nTo my family; my parents and brothers, all their other halves, and to my in-laws. Thank you so much \nfor all your support, for cooking for me, clea ning for me, for the childcare, for the encouragement, \nand for the belief in me. If it takes a village to raise a child… add in a PhD and you have been my city!  \nAnd lastly but by no means least, to my little family. Gu, I am so very grateful for the love and support \nyou have provided me throughout this journey, which has been a little l onger than we anticipated . \nThe financial support, and your incredible hard work in providing for our family, is something I’ll always \nbe appreciative of. At the start of this we were newlyweds, and now we are parents, we got thrown \nsome curveballs along the way, but we got through it together. Thank you! \nWhich leads me onto Leo, and where do I start. My little miracle in so many ways. You have provided \nme with many cuddles, unfaltering love, and the determination to make you proud. You have taught \nme how to  be brave, how to be strong, and  most importantly,  to never give up . So, this one is \ndedicated to you, my lionheart, my warrior, my scrappy little boy!  \n\nii \n \nAbstract \n \nThe majority of those with endometriosis, a common condition affecting an estimated 10% of \ncisgender women of reproductive age, experience symptom onset during adolescence. However, little \nresearch attention has been given to the voices of adolescents and young adults living with the chronic \ncondition. Lack of awareness of endometriosis, menstrual stigmas, and inadequate menstrual health \neducation are considered to contribute to well documented delays in the diagnosis of endometriosis. \nTo date, this thesis is the first empirical study to explore United Kingdom -based adolescents’ \nawareness, as wel l as their experiences of, endometriosis. Taking a pragmatic approach, with a \nfeminist lens, two studies were undertaken: a qualitative study (Study 1) exploring the experiences of \nendometriosis among adolescents/young adults with a diagnosis of endometriosis; and a quantitative \nstudy (Study 2) investigating the awareness of endometriosis among adolescent girls, as well as their \nexperiences of and attitudes towards menstruation. \nIn Study 1, twenty-four participants aged 18 -24, recruited from endometriosis support groups and \nsocial media, participated in qualitative narrative interviews. Findings showed that the symptoms of \nendometriosis in adolescence are wide-ranging, and significantly interfere with many aspects of life, \nincluding school, sport, social life, and relationships.  Adolescents face a long delay in obtaining a \ndiagnosis, which is contributed to by a widespread lack of awareness of endometriosis and frequent \ndismissals by health professionals . Drawing on Bury’s (1982) concept of ‘biographical disruption’,  \nqualitative findings highlight how adolescents’ experiences are significantly shaped by their age and \nlife-stage.  This study makes a novel contribution demonstrating how endometriosis in adolescence is \nexperienced as a ‘biographical threat’, to both their present and imagined life -trajectories. \nFurthermore, this biographical threat is contextualised by the gendered, contested, and stigmatised \nnature of endometriosis. Endometriosis, therefore,  not only impacts many of the key aspects of \nadolescent life, but threatens adolescents’ lives and self -concepts as teenagers/young women, and \ntheir imagined futures as mothers/parents, intimate partners, and careered people.  \nStudy 2 used a cross-sectional survey, with 442 teenage girls aged 15 to 19, recruited from schools in \nthe West Midlands . Findings highlighted that most (94%) adolescent girls experience  period pain, \nwhich for most of these is  moderate to severe; many (23%) miss school due to their periods  (most \noften due to pain) ; and many do not know whether their periods are regular or typical . Only 8% of \ngirls reported that they thought periods were positive, and there was further evidence of stigma and \ntaboos surrounding menstruation, particularly towards discussing it with males and teachers. Finally, \nan overwhelming majority (92%) had no knowledge of endometriosis, and most (85%) would like to \n\niii \n \nlearn about it given the opportunity . The most popular method of gaining such knowledge was at \nschool (51%). \nThis research contributes to the evidence base pertaining to adolescent menstruation and \nendometriosis, and offers support for the need to provide de-stigmatised menstrual health education \nto all  (including education about endometriosis) , and to ensure an age -based approach to \nendometriosis healthcare and support. It also informs future research in this area. \n \n \n  \n\niv \n \nContents \nContents \nAcknowledgements .................................................................................................................................. i \nAbstract ................................................................................................................................................... ii \nContents ................................................................................................................................................. iv \nList of Tables ........................................................................................................................................... x \nList of Figures ......................................................................................................................................... xi \nAbbreviations ........................................................................................................................................ xii \nChapter 1. Introduction .................................................................................................................... 1 \n1.1 The Research Context ............................................................................................................. 1 \n1.2 Research Aim and Objectives .................................................................................................. 3 \n1.3 Research Design ...................................................................................................................... 3 \n1.4 Thesis Outline .......................................................................................................................... 4 \nThesis Part One: Literature Review and Study Methodology ................................................................. 5 \nChapter 2. Literature Review: Background and Context .................................................................. 6 \n2.1 Introduction ............................................................................................................................ 6 \n2.2 Endometriosis ......................................................................................................................... 6 \n2.2.1 Aetiology of Endometriosis ............................................................................................. 7 \n2.2.2 Prevalence of Endometriosis .......................................................................................... 8 \n2.2.3 Diagnosing Endometriosis ............................................................................................... 9 \n2.2.4 Treatment for Endometriosis ........................................................................................ 10 \n2.2.5 Summary ....................................................................................................................... 11 \n2.3 Adolescence .......................................................................................................................... 12 \n2.4 Adolescent Development ...................................................................................................... 13 \n2.4.1 Biological Development ................................................................................................ 13 \n2.4.2 Cognitive Development ................................................................................................. 14 \n2.4.3 Psychosocial Development ........................................................................................... 15 \n2.4.4 Summary ....................................................................................................................... 17 \n2.5 Adolescents Living with Chronic Illness ................................................................................ 17 \n2.6 Menstruation ........................................................................................................................ 21 \n2.6.1 Attitudes, Stigma, and Taboo Towards Menstruation .................................................. 22 \n2.6.2 Adolescents Experiences of and Attitudes Towards Menstruation .............................. 24 \n2.6.3 Menstrual Health in Adolescence ................................................................................. 27 \n2.7 Women’s Experiences of Endometriosis .............................................................................. 31 \n2.7.1 Symptoms ..................................................................................................................... 32 \n\nv \n \n2.7.2 Delay in the Diagnosis of Endometriosis ....................................................................... 32 \n2.7.3 Medical Experience ....................................................................................................... 34 \n2.7.4 Life Interference ............................................................................................................ 35 \n2.7.5 Psychological and Emotional Impact ............................................................................ 37 \n2.8 Chapter Summary ................................................................................................................. 38 \nChapter 3. The Experience and Psychosocial Impact of Endometriosis in Adolescents: A \nSystematic Narrative Review ................................................................................................................ 39 \n3.1 Introduction .......................................................................................................................... 39 \n3.2 Methods ................................................................................................................................ 40 \n3.2.1 Search Strategy ............................................................................................................. 40 \n3.2.2 Inclusion and Exclusion Criteria .................................................................................... 41 \n3.2.3 Screening for Studies .................................................................................................... 41 \n3.2.4 Quality Appraisal ........................................................................................................... 42 \n3.2.5 Data Extraction .............................................................................................................. 43 \n3.2.6 Analysis ......................................................................................................................... 43 \n3.3 Results ................................................................................................................................... 43 \n3.3.1 Thematic Analysis.......................................................................................................... 48 \n3.4 Discussion .............................................................................................................................. 58 \n3.4.1 Strengths and Limitations ............................................................................................. 60 \n3.5 Conclusion ............................................................................................................................. 60 \nChapter 4. Literature Review Summary and Thesis Methodology ................................................. 62 \n4.1 Introduction .......................................................................................................................... 62 \n4.2 Identifying Gaps in Previous Research .................................................................................. 62 \n4.3 The Research Questions ........................................................................................................ 64 \n4.4 Methodological Approach .................................................................................................... 65 \n4.4.1 Study 1: Qualitative Study ............................................................................................. 66 \n4.4.2 Study 2: Quantitative Study .......................................................................................... 67 \n4.5 Philosophical Underpinnings of the Thesis ........................................................................... 68 \n4.6 Researcher Positionality ....................................................................................................... 70 \n4.7 Summary ............................................................................................................................... 71 \nThesis Part 2: Qualitative Study ............................................................................................................ 72 \nChapter 5. Study 1: Methods .......................................................................................................... 73 \n5.1 Introduction .......................................................................................................................... 73 \n5.2 Research Questions and Aims ............................................................................................... 73 \n5.3 Qualitative Approach ............................................................................................................ 73 \n5.3.1 Semi-structured Narrative Interviews........................................................................... 73 \n\nvi \n \n5.3.2 Timelines ....................................................................................................................... 75 \n5.4 Sample Inclusion and Exclusion Criteria ............................................................................... 76 \n5.5 Recruitment .......................................................................................................................... 78 \n5.6 Measures ............................................................................................................................... 80 \n5.6.1 Interview Guide ............................................................................................................. 80 \n5.6.2 Timelines ....................................................................................................................... 81 \n5.7 Ethical Considerations ........................................................................................................... 81 \n5.7.1 Obtaining Ethical Approval to Conduct the Research ................................................... 82 \n5.7.2 Consent, Confidentiality, and Withdrawal .................................................................... 82 \n5.7.3 Protecting the Well-being of Research Participants ..................................................... 83 \n5.7.4 Respecting the Potential Power Imbalance Between Researcher and Participants ..... 84 \n5.8 Data Collection ...................................................................................................................... 84 \n5.9 Data Analysis ......................................................................................................................... 85 \n5.9.1 Choice of Analysis Method............................................................................................ 86 \n5.9.2 Analysis Process ............................................................................................................ 87 \n5.10 Ensuring Trustworthiness in the Research Process .............................................................. 89 \n5.11 A Reflective Account of the Research Process ...................................................................... 90 \nChapter 6. Study 1: Results ............................................................................................................. 93 \n6.1 Introduction .......................................................................................................................... 93 \n6.2 Participant Characteristics .................................................................................................... 93 \n6.3 Thematic Analysis ................................................................................................................. 95 \n6.3.1 Symptom Onset: ‘In the dark’ ....................................................................................... 95 \n6.3.2 Symptoms: ‘Communicating Something invisible’ ...................................................... 102 \n6.3.3 Medical Experiences: ‘Getting Help’ ........................................................................... 108 \n6.3.4 Teenage Life: ‘Missing Out’ ......................................................................................... 118 \n6.3.5 Support and Information: “Nothing for my Age Group” ............................................ 123 \n6.3.6 Emotional Wellbeing: ‘Not Just a Physical Thing’ ....................................................... 126 \n6.3.7 Future: ‘Uncertainty’ ................................................................................................... 130 \n6.4 Chapter Summary ............................................................................................................... 134 \nChapter 7. Study 1 Discussion: Adolescent Endometriosis as ‘Biographical Threat’ .................... 135 \n7.1 Introduction ........................................................................................................................ 135 \n7.2 The Impact of Endometriosis on Adolescent Lives ............................................................. 135 \n7.2.1 Disruption to School, Sports, and Social Participation ................................................ 136 \n7.2.2 Altered Relationships .................................................................................................. 138 \n7.2.3 Emotional Well-being .................................................................................................. 141 \n7.2.4 Summary ..................................................................................................................... 142 \n\nvii \n \n7.3 Adolescents’ Accounts of Obtaining Treatment and a Diagnosis of Endometriosis ........... 142 \n7.3.1 Summary ..................................................................................................................... 148 \n7.4 Support Networks and Information Needs of Adolescents with Endometriosis ................ 149 \n7.5 Futures: The Threat to Life Trajectories .............................................................................. 151 \n7.5.1 Summary ..................................................................................................................... 152 \n7.6 Strengths and Limitations ................................................................................................... 153 \n7.7 Conclusion ........................................................................................................................... 155 \nThesis Part 3: Quantitative Study........................................................................................................ 156 \nChapter 8. Study 2: Method ......................................................................................................... 157 \n8.1 Introduction ........................................................................................................................ 157 \n8.2 Research Questions and Aims ............................................................................................. 157 \n8.3 Quantitative Approach: Surveys ......................................................................................... 158 \n8.4 Sample and Research Setting .............................................................................................. 159 \n8.5 Recruitment ........................................................................................................................ 160 \n8.5.1 School Recruitment ..................................................................................................... 160 \n8.5.2 Participant Recruitment .............................................................................................. 161 \n8.6 Measures: Survey ................................................................................................................ 162 \n8.6.1 Piloting the Survey ...................................................................................................... 164 \n8.7 Ethical Considerations ......................................................................................................... 165 \n8.7.1 Obtaining Ethical Approval to Conduct the Research ................................................. 166 \n8.7.2 Consent, Confidentiality, and Withdrawal .................................................................. 166 \n8.7.3 Protecting the Well-being of Research Participants ................................................... 167 \n8.7.4 Respecting the Potential Power Imbalance Between Researcher and Participants ... 167 \n8.7.5 Obtaining Necessary Permissions ............................................................................... 168 \n8.8 Data Collection .................................................................................................................... 168 \n8.9 Data Analysis ....................................................................................................................... 169 \nChapter 9. Study 2: Results ........................................................................................................... 173 \n9.1 Introduction ........................................................................................................................ 173 \n9.2 Response Rate ..................................................................................................................... 173 \n9.3 Participant Characteristics .................................................................................................. 173 \n9.4 Participants’ Menstrual Experiences .................................................................................. 174 \n9.4.1 Menarche and Menstrual Bleeding Patterns .............................................................. 174 \n9.4.2 Experience of Period Pain ........................................................................................... 176 \n9.4.3 School Absence Due to Periods .................................................................................. 177 \n9.4.4 Contraceptive Pill Use ................................................................................................. 178 \n9.5 Seeing a Doctor About Periods ........................................................................................... 178 \n\nviii \n \n9.6 Pain Severity and Menstrual Related Behaviours ............................................................... 179 \n9.7 Perceived Typicality of Periods ........................................................................................... 181 \n9.7.1 Significant Findings ..................................................................................................... 182 \n9.7.2 Multinomial Logistic Regression ................................................................................. 183 \n9.8 Attitudes and Communication ............................................................................................ 185 \n9.8.1 Attitudes Towards Periods .......................................................................................... 185 \n9.8.2 Communication About Periods ................................................................................... 187 \n9.9 Awareness of Endometriosis............................................................................................... 188 \n9.9.1 Participant Characteristics and Their Awareness of Endometriosis ........................... 190 \n9.10 Education and Communication Preferences About Endometriosis .................................... 192 \n9.10.1 Participant Characteristics and Their Preferences About Further Endometriosis \nEducation .................................................................................................................................... 193 \n9.10.2 Significant Findings ..................................................................................................... 195 \n9.11 Chapter Summary ............................................................................................................... 195 \nChapter 10. Study 2: Discussion...................................................................................................... 196 \n10.1 Introduction ........................................................................................................................ 196 \n10.2 Menstrual Experiences........................................................................................................ 196 \n10.2.1 Age of Menarche ......................................................................................................... 196 \n10.2.2 Menstrual Cycle and Bleeding Length ......................................................................... 197 \n10.2.3 Period Pain .................................................................................................................. 197 \n10.2.4 Behaviours Related to Menstruation .......................................................................... 198 \n10.2.5 Summary ..................................................................................................................... 202 \n10.3 Perceived Typicality of Periods ........................................................................................... 203 \n10.3.1 Summary ..................................................................................................................... 206 \n10.4 Attitudes and Communication about Menstruation .......................................................... 206 \n10.4.1 Summary ..................................................................................................................... 209 \n10.5 Awareness of Endometriosis............................................................................................... 209 \n10.5.1 Summary ..................................................................................................................... 213 \n10.6 Strengths and Limitations ................................................................................................... 213 \n10.7 Conclusion ........................................................................................................................... 215 \nThesis Part 4: Recommendations and Conclusion .............................................................................. 217 \nChapter 11. Recommendations and Conclusion............................................................................. 218 \n11.1 Introduction ........................................................................................................................ 218 \n11.2 Summary of Key Findings .................................................................................................... 218 \n11.3 Implications for Policy and Practice .................................................................................... 219 \n\nix \n \n11.3.1 Key Recommendation: An Increased Effort to Provide De-stigmatised Menstrual \nHealth Education to all Adolescents ........................................................................................... 219 \n11.3.2 Key Recommendation: An Age-based Approach to Endometriosis Healthcare and \nSupport 222 \n11.4 Recommendations for Future Research ............................................................................. 223 \n11.5 Conclusion ........................................................................................................................... 225 \nReferences .......................................................................................................................................... 227 \nAppendices .......................................................................................................................................... 249 \nAppendix 1: Data Extraction Form for Narrative Review ................................................................ 250 \nAppendix 2: Quality Appraisal of Included Studies ......................................................................... 251 \nAppendix 3: Study 1 Recruitment Flyers ......................................................................................... 254 \nAppendix 4: Study 1 Telephone Screening Sheet ........................................................................... 255 \nAppendix 5: Study 1 Interview Guide ............................................................................................. 256 \nAppendix 6: Study 1 Timeline Drawing Instructions ....................................................................... 262 \nAppendix 7: Study 1 Ethics Approval Letter .................................................................................... 263 \nAppendix 8: Study 1 Participant Information Sheet ....................................................................... 264 \nAppendix 9: Study 1 Parent Information Sheet .............................................................................. 266 \nAppendix 10: Study 1 Participant Consent Form ............................................................................ 268 \nAppendix 11: Study 1 Parent Consent Form ................................................................................... 269 \nAppendix 12: Study 1 Participant Further Information Sheet ........................................................ 270 \nAppendix 13: Study 1 Approval to Recruit Through Endometriosis UK .......................................... 271 \nAppendix 14: Study 2 Information for Potential Schools................................................................ 272 \nAppendix 15: Study 2 Participant Information Sheet ..................................................................... 274 \nAppendix 16: Study 2 Parent Information Sheet and Consent Form - Opt Out ............................. 276 \nAppendix 17: Study 2 Parent Information Sheet and Consent Form - Opt In ................................ 279 \nAppendix 18: Study 2 Participant Consent Form ............................................................................ 283 \nAppendix 19: Study 2 Survey .......................................................................................................... 284 \nAppendix 20: Study 2 Ethics Approval Letter .................................................................................. 290 \nAppendix 21: Study 2 Further Information Sheet for Participants ................................................. 291 \nAppendix 22: Study 2 Verbal Instructions for Survey Completion ................................................. 292 \nAppendix 23: Study 2 Missing Data Analysis .................................................................................. 293 \nAppendix 24: Study 2 Findings Published in the Journal of Pediatric and Adolescent Gynaecology\n ........................................................................................................................................................ 294 \n \n  \n\nx \n \nList of T ables \n \nTable 3.1: Research Databases and Search Terms................................................................................ 40 \nTable 3.2: Paper Characteristics ............................................................................................................ 45 \nTable 3.3: Themes Identified in the Literature ..................................................................................... 49 \nTable 6.1: Participant Characteristics ................................................................................................... 94 \nTable 6.2: Themes and Subthemes Resulting from Thematic Analysis ................................................ 95 \nTable 6.3: Participants' Delays Obtaining a Diagnosis of Endometriosis ............................................ 115 \nTable 8.1: Key Data Analyses for Research Questions ........................................................................ 171 \nTable 9.1: Response Rate Within Schools ........................................................................................... 173 \nTable 9.2: Demographic Characteristics of the Sample ...................................................................... 174 \nTable 9.3: Menstrual Bleeding Patterns.............................................................................................. 175 \nTable 9.4: Experience of Period Pain and Use of Medication ............................................................. 177 \nTable 9.5: School Absence Due to Periods .......................................................................................... 178 \nTable 9.6: Seeing a Doctor About Periods .......................................................................................... 179 \nTable 9.7: Association Between Pain Severity and Menstrual Related Behaviours ........................... 180 \nTable 9.8: Comparisons of Characteristics of Menstrual Experiences by Perceived Typicality of \nPeriods ................................................................................................................................................ 181 \nTable 9.9: Multinomial Logistic Regression Analysis Showing Factors Predicting Perceived Typicality \nof Periods ............................................................................................................................................ 184 \nTable 9.10: Examples of Participants Descriptions of Endometriosis ................................................. 189 \nTable 9.11: Comparisons of Characteristics of Participants by Knowledge of Endometriosis ........... 191 \nTable 9.12: Learning and Communication Preferences about Endometriosis ................................... 193 \nTable 9.13: Comparisons of Participants’ Characteristics by Learning Preferences for Endometriosis\n ............................................................................................................................................................ 194 \n \n \n\nxi \n \nList of Figures \n \nFigure 3.1: Literature Search and Screening Process ............................................................................ 42 \nFigure 6.1: Participants' Descriptions of Pain Experienced During Sexual Intercourse ...................... 104 \nFigure 6.2: Participants' Descriptions of Disruptions Caused by Bowel Symptoms ........................... 107 \nFigure 6.3: Age References Regarding Medical Encounters ............................................................... 109 \nFigure 9.1: Frequency of Participant Responses on Menstrual Attitude Questions........................... 186 \nFigure 9.2: Sources of Information about Menstruation .................................................................... 187 \nFigure 9.3: Comfort Level in Discussing Menstruation with Family and Friends ................................ 188 \nFigure 9.4: Information Sources about Endometriosis ....................................................................... 190 \n\nxii \n \nAbbreviations \n \nAbbreviation Full Term \nAMAQ \nAWCI \nAYA \nAYW \nCPP \nDIE \nGP \nHRQoL \nMHE \nMMAT \nNICE \nNSAIDs \nOCP \nOTC \nPCOS \nQoL \nRCT \nUK \nUSA \nWWE \nAdolescent Menstrual Attitudes Questionnaire \nAdolescents with Chronic Illness \nAdolescents and Young Adults \nAdolescents and Young Women \nChronic Pelvic Pain \nDeeply Infiltrating Endometriosis  \nGeneral Practitioner \nHealth-Related Quality of Life \nMenstrual Health Education \nMixed Methods Appraisal Tool \nNational Institute for Clinical Excellence \nNonsteroidal Anti-Inflammatory Drugs  \nOral Contraceptive Pill \nOver the Counter (medications) \nPolycystic Ovary Syndrome \nQuality of Life \nRandomised Controlled Trial \nUnited Kingdom \nUnited States of America \nWomen With Endometriosis \n \n\n1 \n \nChapter 1. Introduction  \n \n1.1 The Research Context \nEndometriosis is classically defined as a chronic gynaecological condition, in which endometrial like \ntissue is found outside of the uterine cavity, often on the reproductive organs, bowel, and bladder. In \nresponse to hormones, these tissue deposits induce a local inflammatory response, which can lead to \nfibrosis and adhesion formation  (Kennedy et al., 2005) . Common symptoms include chronic pelvic \npain, dysmenorr hoea, dyspareunia (pain during sexual intercourse), fatigue, heavy menstrual \nbleeding, and infertility.  The definition of endometriosis as a gynaecological condition has been \nrecently challenged as outdated, as it does not reflect the true scope of the condition, which often \nmanifests outside of the female reproductive tract  (Taylor et al., 2021) . Therefore, e ndometriosis \nshould be considered a systemic disease, rather than one only affecting the pelvis (ibid). \nEndometriosis affects approximately 1 in 10 women of reproductive age (Eskenazi and Warner, 1997), \nalthough the true prevalence rate is unknown due to delays in diagnosis. The prevalence of \nendometriosis in adolescents is even more unclear (Saridogan, 2017), however the majority of women \nwith the condition report that their symptoms began during adolescence, even if it was not diagnosed \nat the time  (Greene et al., 2009; Manderson et al., 2008) . Endometriosis is common in adolescents \nwho suffer from chronic pelvic pain (CPP), occurring in approximate ly 62% of those referred for \nlaparoscopy due to their CPP, and increasing to 75% in those whose CPP is resistant to treatment  \n(Janssen et al., 2013). \nResearch into adolescent endometriosis has had a largely medical focus, with m ost attention paid to \nits clinical presentation and response to treatment (Saridogan, 2017). Yet, even according to the most \nrecent endometriosis guidelines, there is limited evidence available on endometriosis in this \ndemographic (ESHRE, 2022). In the past, endometriosis was considered a ‘career women’s disease’, \naffecting those in their mid to late 30s who delay pregnancy (Sanmiguel, 2000), and only very recently, \nin 2017, the NICE Guidelines were updated to acknowledge the occurrence in this age group \n(Kuznetsov et al., 2017) .  Current evidence on adolescent endometriosis suggests that adolescents’ \nclinical presentation may be different than adults with endometriosis, they may have a longer wait for \na diagnosis, and their endometriosis may be more progressive (ESHRE, 2022). Despite this evidence, \nvery little research has addressed the illness experience of endometriosis in adolescents (Culley et al., \n2013; Fedele, 2021; Young et al., 2015).  \nAdolescence is a critical transitional period in the lifespan, characterised by major biological, cognitive, \nand psychosocial developments. The occurrence of a chronic condition during adolescence can \n\n2 \n \ninfluence these fragile developmental processes (Suris et al., 2004) , and research conducted with \nadolescents with chronic illnesses has indicated there are disruptions to schooling and peer \nrelationships, as well as a re-thinking of future life plans (Grinyer, 2007; Kirk and Hinton, 2019; Lum et \nal., 2017; Taylor et al., 2008) . The limited available evidence on adolescents’ experiences of \nendometriosis suggests that it too causes disruptions such as these (Moradi et al., 2014; Plotkin, 2004; \nRush and Misajon, 2018) . In addition, endometriosis is a gendered, sti gmatised, and contested \ncondition, and thus, those affected often struggle to receive treatment, a timely diagnosis, and the \nsupport of others (Denny and Weckesser, 2019) . Such issues exacerbate the emotional and \npsychological burden already brought on by living with endometriosis (Plotkin, 2004).  \nThe delay in diagnosis is one of the most salient aspects of the literature pertaining to women’s \nexperiences of endometriosis (Culley et al., 2013) , and improvements to the diagnostic process are \nconsidered, by a global consortium of investigators, to be a key research priority (Rogers et al., 2017). \nIn addition to the ‘medical level’ delay (Ballard et al., 2006), during which adolescents frequently have \ntheir symptoms dismissed by GPs, are told they are too young to have endometriosis, or encounter a \nreluctance in being given diagnostic procedures (Cox et al., 2003a; Denny, 2004b; Denny and Mann, \n2008; Markovic et al., 2008), it is common for delays at the patient level.  These precede medical level \ndelays, and are defined as a delay in seeking help after symptoms begin (Ballard et al., 2006) . \nAdolescents may have a  tendency t o normalise irregular symptoms and lack an awareness of \nendometriosis (Cox et al., 2003c; Denny, 2009; Manderson et al., 2008; Markovic et al., 2008) . This \nresults from poor menstrual health education (MHE), which often fails to provide enough information \non the embodied experience of menstruati on (Brown et al., 2022; Burrows and Johnson, 2005) , and \nthe stigmas associated with discussing menstruation with others (Seear, 2009a). When it comes to \ntheir menstrual health, adolescents are often therefore left wondering, “Am I ‘normal’?”. This may be \nparticularly significant in adolescence, a life -stage in which belonging, and ‘fitting in’, is of principal \nimportance (Thomson, 2007). \nDisparities in women’s healthcare, inadequate provision of MHE, and the lack of awareness of \nendometriosis have all gained traction in the media over recent years. Furthermore, an  All-Party \nParliamentary Group on Women’s Health was set up in 2016 to provide a platform within Westminster \nto discuss women’s health issues, including raising awareness of conditions solely affecting women. \nAs part of their 2017 enquiry into women’s health, they re commended MHE within the school \ncurriculum about normal and abnormal menstruation, when to seek help for periods, and education \nabout endometriosis (APPG Women's Health, 2017). They also aim to ensure that women can access \nthe right treatments, in a timely manner. The existing evidence which supports such recommendations \ncomes from research conducted with adults with endometriosis (e.g. Cox et al., 2003c; Manderson et \n\n3 \n \nal., 2008; Markovic et al., 2008) , and surveys carried about by charitable organisations (Plan \nInternational UK, 2018) or commercial parties (Bodyform, 2018; Procter & Gamble, 2018). However, \nthere is still insufficient academic research with adolescents providing such evidence, which may \nsupport the implementation of improved MH E, and improved healthcare for adolescents with \nendometriosis. \n \n1.2 Research Aim and Objectives \nThe main aims of this research were to explore adolescents’ awareness and experiences of \nendometriosis, and to determine which aspects of menstruation may be associ ated with ‘normal’ or \n‘typical’ menstruation. These aims were addressed through the following research objectives: \n1. To explore the experiences of adolescents living with endometriosis, and the impact of \nendometriosis on their lives and identities as adolescents/young adults. \n2. To identify adolescents’ healthcare, information, and support needs regarding endometriosis. \n3. To explore the awareness of endometriosis among a large sample of adolescent girls. \n4. To investigate the menstrual experience in a UK sample of adolescent girls, the prevalence of \ndysmenorrhea, and to provide insight into their perceptions of the typicality of menstrual \nsymptoms. \n5. To develop recommendations for schools to educate adolescents, and for clinical health \nservices and support services to s upport adolescents with endometriosis/suspected \nendometriosis. \n \n1.3 Research Design \nTo facilitate the aims and objectives, a pragmatic approach to the research was adopted, with a \nfeminist theoretical lens. It was deemed that the best way to address the research aims was to conduct \ntwo separate studies, as the focus was on two different, although inter -related, populations. \nTherefore, a qualitative study (Study 1) explored the experiences of endometriosis among \nadolescents/young adults with a diagnosis of endometriosis (n=24), and a quantitative study (Study 2) \ninvestigated the awareness of endometriosis among a sample of adolescent girls ( n=442), as well as \ntheir experiences of and attitudes towards menstruation. \n \n\n4 \n \n1.4 Thesis Outline \nThis chapter has described the research context, including an introduction of the research problem, \nand has outlined the aim and objectives, the research design, and an overview of the thesis. The \nremainder of the thesis is split into 4 main parts.  \nThe first part of the thesis is labelled ‘Literature Review and Study Methodology’ and is comprised of \nthree chapters. The first chapter in this part (Chapter 2) provides context and background for the \nmajor topics within this thesis, including endometriosis, adolescence, and chronic ill ness in \nadolescence. It also provides literature reviews on both menstruation in adolescence and women’s \nexperience of endometriosis. Chapter 3  outlines the method of conducting a systematic narrative \nreview of the current qualitative and quantitative lite rature addressing the experience of \nendometriosis in adolescents, and the results are discussed. The final chapter in this part (Chapter 4) \ndraws on the two preceding chapters and discusses the gaps in the current literature. The \nmethodology of the thesis is then detailed.  \nPart 2 of the thesis provides an account of the qualitative study (Study 1) and consists of three \nchapters. Chapter 5 outlines the study’s research questions and method, including participants, \nrecruitment, data collection, and analysis.  It also addresses ethical considerations and a reflective \naccount of the research process. The findings from the qualitative study are presented in Chapter 6. \nFinally, Chapter 7 discusses these findings, drawing on past literature and theories surrounding chronic \nillness. The strengths and limitations of the research are also discussed.  \nThe quantitative study (Study 2) is reported in Part 3 of the thesis and includes three chapters. Chapter \n8 outlines the research questions, method, and ethical considerat ions. Chapter 9 reports on the \nfindings from the quantitative study. Finally, Chapter 10 discusses these findings with relation to past \nliterature on menstruation experiences, dysmenorrhea, the ‘typicality’ of periods, and endometriosis \nawareness. The strengths and limitations of the research are also discussed. N.B Some of the findings \nfrom Study 2 were written up as an article and published in the Journal of Pediatric and Adolescent \nGynaecology (see Appendix 24 and Randhawa et al., 2021). \nThe final part (Chapter 11) draws upon the findings of the qualitative and quantitative studies to \noutline the implications of the research for policy and practice, and t he recommendations for future \nresearch. This final chapter ends with a reflection on the contributions of the thesis, and the benefits \nof completing two separate but interrelated studies. \n  \n\n5 \n \nThesis Part One: Literature Review and Study Methodology \n \n  \n\n6 \n \nChapter 2. Literature Review: Background and Context \n2.1 Introduction \nThis chapter introduces and describes the key topics of this thesis. Background information on \nendometriosis is provided, including its definition, symptoms, aetiology, prevalence, diagnostic \nprocess, and treatment options. Following this, context and background are provided in light of the \nfocus of this thesis; the experience of endometriosis in adolescents. Firstly, adolescence is discussed, \nwith an exploration into the major developments that take place within this life phase. The experience \nof living with a chronic illness during adolescence is then discussed. As will become clear, there is little \navailable evidence on the experience of endometriosis in adolescents, and so the literature regarding \nmenstruation in adolescence, and that regarding women’s experiences of endometriosis are then \nreviewed. The former includes a discussion around the stigma and attitudes associated with \nmenstruation, and adolescent’s experiences of menstruation. This chapter theref ore provides the \nbroad context of the subject area, setting the scene for a more structured search, reported in Chapter \n3, which explores literature around endometriosis in adolescence in more depth. \n \n2.2 Endometriosis \nEndometriosis is a chronic systemic condition, classified as the presence of endometrial -like tissue \noutside of the uterine cavity (Kennedy et al., 2005; Taylor et al., 2021). This tissue is commonly found \non the pelvic organs (the reproductive organs, bowel, and bladder) and areas of the peritoneum. It \ncan occasionally be located in other areas of the body including the kidneys, lungs, or even the brain \n(Sourial et al., 2014). In response to oestrogen, these tissue deposits elicit an  inflammatory reaction, \nthe result of which can vary in extent from small lesions, to large ovarian endometriomas and \nextensive fibrosis/adhesion formation (Giudice, 2010). This can cause a marked distortion to both the \narchitecture and functioning of the affected organs, thus resulting in a large variety of symptoms such \nas pelvic pain, heavy menstrual bleeding, dyspareunia (pain on sexual intercourse), and infertility. It is \nalso common f or those with endometriosis to experience bowel and bladder symptoms, including \npainful urination and bowel movements, and other gastrointestinal problems (diarrhoea, \nconstipation, etc,).  \n \n\n7 \n \n2.2.1 Aetiology of Endometriosis \nEndometriosis is often described as enigmatic because its exact cause remains unknown. There are a \nnumber of theories attempting to explain the pathogenesis of endometriosis, however none of them \nhave been conclusively confirmed (Sourial et al., 2014) . One of the oldest theories proposes that \nendometriosis is a result of retrograde menstruation; wher eby endometrial tissue residues flow \nbackwards through the fallopian tubes and into the peritoneal cavity during menstruation (Sampson, \n1927). There is some support for this theory, for example, endometriotic lesions are commonly \nlocated in the lowermost portion of the peritoneal cavity (Laufer et al., 2003), which is thought to be \ndue to the accumulation of menstrual waste under the influence of gravity (Burney and Giudice, 2012). \nHowever, there also remains much debate around this theory. This backward flow of menstrual waste \nappears to be a c ommon physiologic event, occurring in up to 90% of menstruating women with \npatent fallopian tubes (Halme et al., 1984) , few of whom have endometriosis. It is also unable to \nexplain why endometriosis is found in pre -pubertal girls, new-borns, or (rarely) males (Sourial et al., \n2014). While this theory may account for the displacement of endometrial tissue in extrauterine areas, \nfactors such as a genetic predisposition, oestrogen dependence, progesterone resistance, and \nimmune dysfunction may explain why some women develop endometriotic implants when others do \nnot (Burney and Giudice, 2012). \nSome  theories propose a non -uterine origin of disease, an example of  which is coelomic metaplasia \n(Burney and Giudice, 2012; Sourial et al., 2014) . According to this theory, extrauterine cells, such as \nperitoneal cells, abnormally transform into endometrial cells. This transformation may occur due to \nendocrine disrupting chemicals (Burney and Giudice, 2012), or an inductive stimulus such as hormonal \nor immunological factors (Sourial et al., 2014). This theory would explain how endometriosis is found \nin pre-pubertal girls. However, oestrogen, which usually propels endometrial growth, is only present \nin low levels in such girls, and so they may present a different form of endometriosis than is found in \nthose of reproductive age (Sourial et al., 2014). \nThis is a very brief overview of some of the theories proposed to explain the aetiology of endometriosis \n(see Sourial et al., 2014 for a review of other theories) , however it does illustrate that whi le each \ntheory explains some aspect of endometriosis, no single theory accounts for all of its varying \nmanifestations, of which there are many (Laufer et al., 2003) . As such, “ A unifying theory regarding \nthe origin of endometriosis has remained mystifyingly elusive. ” (Burney and Giudice, 2012: 2) . This \nmeans that there is no definitive cure for endometriosis, and so treatment is aimed at managing the \ncondition (Sourial et al., 2014).  \n \n\n8 \n \n2.2.2 Prevalence of Endometriosis \nEndometriosis is a condition which predominantly affects women of reproductive age, although it has \nbeen found in premenarcheal girls (Laufer, 2000) and post-menopausal women (Haas et al., 2012) .  \nEndometriosis is estimated to affect approximately 10% of women of reproductive age (Eskenazi and \nWarner, 1997), however the exact prevalence is unknown, and estimates vary considerably, between \n2.7% (Bernuit et al., 2011)  and 28.6% (Parazzini et al., 2020) .  This variance is likely to be due to \ndifferences in both the population under study, and the way that diagnosis is reported (Zannoni et al., \n2014). It is a considerable problem in women who have fertility issues; as many as 47% of whom \nultimately receive a diagnosis of endometriosis (Meuleman et al., 2009).  \nThe prevalence of endometriosis among adolescents is more difficult to clarify (Saridogan, 2017). \nRather than make population estimates, systematic reviews have focussed on the prevalence among \nthose referred for laparoscopy for dysmenorrhoea or chronic pelvic pain (CPP);  of whom 62% (Janssen \net al., 2013) and 64% have endometriosis (Hirsch et al., 2020) . In those whose CPP was resistant to \ntreatment, the prevalence was 75% (Janssen et al., 2013) . Although such research suggests a \nsignificant incidence of endometriosis among adolescent girls with pe lvic pain, the authors do \nacknowledge several limitations.  Most reviewed studies used retrospective data collection methods, \nwhich maybe prone to a positive selection bias, and therefore an overestimation of prevalence \n(Janssen et al., 2013) . The criteria for referral for a laparoscopy varies between reviewed studies \n(Hirsch et al ., 2020; Janssen et al., 2013) , and often depends on the subjective opinions of GPs and \nsurgeons, and therefore those with the most severe symptoms maybe more likely to be referred \n(Janssen et al., 2013; Saridogan, 2017).  Consequently, these prevalence rates may be exaggerated, as \nthey might only include the most severe cases. \nHowever, a major obstacle in determining the prevalence of endometriosis in adolescents is that many \nwomen report that although their symptoms began during adolescence, they did not receive a \ndiagnosis until they were well into adulthood (Greene et al., 2009) . Haas et al. (2012)  examined the \nage distribution of women admitted to hospital for surgical treatment of endometriosis in 2005 and \n2006 in Germany, and found that the 10-15-, 15-20-, and 20–25-year-old age groups represented just \n0.05%, 1.93%, and 6.11% of admissions respectively. This, coupled with the finding that most women \n(78.37%) were aged between 20 -45, indicates that women under 20 are much less likely to be \ndiagnosed with endometriosis. Saridogan (2017) suggests that clinicians, adolescents, or their families \nmight have a higher threshold when agreeing to and performing a laparoscopy in this age group. \nIndeed, laparoscopies in this demographic often cause embarrassment and anxiety, therefore it may \nbe preferable to delay them until all avenues have been explored (Pandis et al., 2009). Finally, not all \n\n9 \n \nthose with endometriosis experience symptoms, as it can occur asymptomatically (Dunselman et al., \n2014). In such cases, one would be unlikely to present to a clinician. Therefore, reviewing all evidence \ntogether, the prevalence of endometriosis in adolescents is likely to be higher than current statistical \nestimates.  \n \n2.2.3 Diagnosing Endometriosis \nThe gold standard for diagnosing endometriosis is visual inspe ction achieved during surgical \nlaparoscopy (Kennedy et al., 2005) . However, it often takes many years after symptom onset until \nwomen have this surgery , as the average delay for a diagnosis of endometriosis in the UK is 7.5 \n(Endometriosis UK, 2011)  to 8 years (Ghai et al., 2020) . This long wait is characterised by delays at \nboth the ‘patient level’, in seeking help for symptoms, and at the ‘medical level’, in obtaining a referral \nand subsequent diagnosis of endometriosis (Ballard et al., 2006). This is discussed further in Section \n2.7.2 of this chapter.  \nBefore obtaining a lapa roscopy, women may undergo several other diagnostic investigations, \nincluding transvaginal ultrasounds or magnetic resonance imaging (MRI) scans (Giudice, 2010) . \nHowever, these methods hav e a low sensitivity for detecting peritoneal and ovarian adhesions and \nimplants (Brosens et al., 2004) . They perform better at detecting and diagnosing ovarian \nendometrioma, providing the diameter is greater than 2cm (Brosens et al., 2004). If endometriosis is \nnot diagnosed during ultrasound or MRI, women may either be referred for laparoscopy, or given a \nfalse-negative result, with no further investigation until they present again (Ballard et al., 2006). \nOnce laparoscopy confirms endometriosis, information is often provided on the severity of disease; \nusually assessed using the revised scoring system of the American Society for Reproductive Medicine \n(Canis et al., 1997). This system classifies disease by stages, ranging from stage I (minimal) to stage IV \n(severe), based on the extent and location of disease, and the type, appearance and depth of \ninfiltrating lesions (Giudice, 2010). However, correlation is often lacking between the disease stage \nand the type or severity of pain symptoms experienced (Vercellini et al., 2006). An exception to this is \ndeeply infiltrating endometriosis (DIE), which is defined as nodules that extend >5mm beneath the \nperitoneum, as the depth of this infiltration is related to symptom severity (Chapron et al., 2003; \nKennedy et al., 2005). As pain levels do not always equate with severity of disease, women may feel \nfrustrated or aggrieved if their di sease stage minimises their level of suffering (Denny, 2009) . \nConversely, women who have no symptoms, yet receive a diagnosis of advanced stage disease during \ninvestigation for other conditions, can be alarmed (Cox et al., 2003c). \n\n10 \n \nAdolescents are often found to have disease stages I or II (Dun et al., 2015; Gallagher et al., 2017) , \nhowever there is evidence of stages III and IV (Fong et al., 2017; Hirsch et al., 2020) , and of DIE \n(Audebert et al., 2015) . Older adolescents can be more likely to have mor e advanced stages, which \nmay be an indication that endometriosis is progressive (Fong et al., 2017) . Given the potential long \nterm consequences of undiagnosed endometriosis, including impacts on quality of life and future \nfertility (Fong et al., 2017) , addressing diagnostic delays is critical. As such, the exploration of this \ndelay, and the identification of non -invasive diagnostic methods, are often highlighted as research \npriorities for endometriosis (As-Sanie et al., 2019; Rogers et al., 2017).  \nEvidence suggests that when symptoms start during adolescence, it may take longer to receive a \ndiagnosis than when symptoms start later (Arruda et al., 2003; Ghai et al., 2020; Greene et al., 2009; \nPino et al., 2022). Greene et al. (2009) found that those with adolescent onset (aged ≤19 years) waited \nan average of three times as long to seek medical attention for their symptoms than those with adult \nonset (aged ≥20 years), and once medical attention was sought, it took them almost three times as \nlong again to receive a diagnosis. One potential reason for this is that adults may present to clinicians \nwith fertility issues rather than pain, and may therefore be taken more seriously (Arruda et al., 2003). \nWhile longer delays in obtaining a diagnosis for those with adolescent onset are consistently found, \nsome research suggests that in those who do receive a diagnosis during adolescence, it is received \nmore quickly than for those who obtain a diagnosis during adulthood (DiVasta et al., 2018; Fong et al., \n2017). There is yet to be a thorough exploration of why this may occur, however factors such as \nparental advocacy and health insurance coverage may play a role (DiVasta et al., 2018). \n \n2.2.4 Treatment for Endometriosis \nThere is no cure for endometriosis and so the aim of treatment is to manage symptoms, through \nmedical and/or surgical means (Sourial et al., 2014) . Long-term treatment often involves repeated \ncourses of medical or surgical therapy (or both), as often, pain recurs within 6 to 12 months of \ntreatment completion (Giudice, 2010) . Medical therapies usually consist of painkillers and/or \nhormonal treatment. A range of analgesics and non -steroidal anti-inflammatory drugs (NSAIDs) are \ncommonly used. A Cochrane review indicated that there was no  evidence of the effectiveness of \nNSAIDs for pain relief in women with endometriosis (Brown et al., 2017) . In addition, NSAIDs might \nhave significant side effects such as gastric ulceration and disturbance of ovulation, so need to be \ntaken with caution (Kennedy et al., 2005). \n\n11 \n \nHormone treatments include the oral contraceptive pill (OCP), intrauterine devices (i.e. the coil), and \nthose which induce pseudo-menopause, such as gonadotrophin releasing hormone (GnRH) agonists \n(Kennedy et al., 2005) . A systematic review indicated that these treatmen ts can be effective in \nreducing endometriosis-associated pain in most women, however up to 19% may experience no pain \nrelief (Becker et al., 2017) . In addition, recurr ence of pain after cessation of treatment is common, \nappearing in 17-34% of women (Becker et al., 2017). Hormonal treatments can have many unwanted \nside-effects, often affecting appearance, and so some women do not feel it is worth enduring these \nto reduce their pain (Denny, 2009). GnRH agonists have the additional side -effect of causing bone \ndensity loss, and therefore their use in adolescents may be limited until after they have completed \nbone formation (Saridogan, 2017). Treatment with hormonal therapy is not appropriate for those \nseeking infertility treatment for endometriosis.  \nSurgical treatment for endometriosis may be used after medical treatment has failed, or as a first line \ntreatment (Giudice, 2010). Laparoscopy is most commonly performed (De Graaff et al., 2013), during \nwhich visible diagnosis can be achieved, and areas of endometriosis can be removed via either excision \nor ablation (Kennedy et al., 2005). Laparoscopic surgery can improve pain outcomes, particularly when \ncompared to diagnostic laparoscopy alone (Jacobson et al., 2009) . However, treatment is not \npermanent, and symptoms often recur. Abbott et al. (2003) found that 36% of their sample of women \nrequired further surgery within 5 years of laparoscopy, and Audebert et al. (2015) found that 34% of \nthe adolescents in their study required further surgery within 8 years. In severe cases, some women \nundergo radical surgical procedures including partial or full hysterectomy, however, e ven these \nmeasures do not always provide a permanent solution (Giudice, 2010). Recurrence of symptoms may \nbe a major concern for adolescents, as it may lead to multiple operations and symp tomatic suffering \nextending over a large proportion of their lives, until they reach menopause (Saridogan, 2017).  \n \n2.2.5 Summary  \nEndometriosis is a chronic condition, affecting approximately 10% of women of reproductive age, with \nthe prevalence among adolescents remaining unclear. Symptoms include pelvic pain, bowel and \nbladder issues, and infe rtility, but it can also occur asymptomatically. With no definitive cause, \nendometriosis cannot be cured, and treatment is therefore aimed at clinical management. It can take \nmany years to obtain a diagnosis, which may be lengthier if symptoms begin during  adolescence. \nWomen often experience a number of social and psychological impacts while living with endometriosis \n(Culley et al., 2013), which are discussed in Section 2.7 of this chapter. However, little is known about \nthe experiences of adolescents who have endometriosis (Culley et al., 2013; Young et al., 2015), which \n\n12 \n \nis therefore the focus of this thesis. To provide some context and background to this thesis, focus will \nnow turn to the key concepts of adolescence, adolescents with chronic illness, and menstruation. \n \n2.3 Adolescence \nThe word adolescence derives from the Latin word adolescere, meaning ‘to grow up’ (Sawyer et al., \n2018). Definitions of adolescence differ depending on discipline, and therefore the notion of \nadolescence is somewhat contested (Dahl, 2004). Most definitions, however, describe adolescence as \na ‘transitional’ period between being a child and being an adult (Dahl, 2004; Holmbeck, 2002; James, \n2017; Sawyer et al., 2018; Smetana et al., 2006; among many others), and between being dependent \nand becoming independent (Kehily, 2007), but there is a lack of clarity about when adolescence begins \nand ends. This is in part because adolescence begins with biological changes (i.e. puberty), but ends \nin the attainment of ‘adult’ social roles, (i.e. home ownership, marriage, etc.: Dahl, 2004) . \nFurthermore, this span of time has gradually been increasing over the last few decades, as the onset \nof puberty has become earlier, and adult social role transitions are occurring later (Sawyer et al., \n2018). \nDefining adolescence by age is therefore challenging, but many have attempted. In 1904, G. Stanley \nHall published what is considered to be seminal work in the field of adolescence, in which he used the \nage range 14 to 2 4 years . However, the  World Health Organisation, the United Nations General \nAssembly and UNICEF define adolescence by the age range 10-19 years (UNICEF, 2011). This definition, \nwhich has been in place since the middle of the 20 th century, is still widely used, although  there has \nbeen significant change in the  course of adolescent growth and the timing of social role transitions \nsince that time (Sawyer et al., 2018) . Therefore, more recently, researchers have suggested that an \nage range which represents a more contemporary notion of adolescence is 10 to 24 years (Hagell et \nal., 2013; James, 2017; Sawyer et al., 2018).  \nThese inconsistencies provide further confirmation of the difficulty in defining ‘adolescence’ and \nindicate that definitions which are based on age may need to be continually re -visited. It  is also \nimportant when discussing this transitional stage, to be mindful of the terminology used; the terms \n‘adolescents’, ‘teenagers’, ‘young people’, and ‘youth’ are often used interchangeably. Social \nconstructionists prefer to use the terms young peopl e or youth, and refer to those in this phase as a \nsocially constituted group, who are shaped by the culture and society in which they live (Kehily, 2007). \nThe terms adolescents and teenagers are considered to be more biological, used by those interested \nin psychology or human development, who discuss this period as a developmental stage (ibid). With \n\n13 \n \nthe onset of puberty occurring between the ages of 9 and 12 years, and the accomplishment of adult \nroles delayed until the mid -20s, the period of adolescent development has expanded, and is much \nlarger than just the ‘teenage’ years alone (Dahl, 2004). Therefore, when discussing this life -stage in \ndevelopmental terms, the term adolescence may be most appropriate, and is adopted henceforth for \nthe duration of this thesis. However, when referring to the work of other researchers, the terminology \nthey have adopted will be used. \n \n2.4 Adolescent Development \nWhile there may some ambiguity around terminologies and age-based definitions, there is agreement \nin the conceptualisation of adolescence as a time of major change. Although initiated by biological \ndevelopments, adolescence also encompasses major social and psychologica l developments, which \noccur at a rapid rate, second only to infancy (Holmbeck, 2002). In addition, these developments do \nnot occur independently of one another. For example,  changes resulting from puberty can alter \nphysical appearance (i.e. appearing as an adult), which may then effect social encounters (Dahl, 2004). \nNeither do they occur independently of external events, such as changes at school or home (Petersen \net al., 1995) . How one negotiates these developments will have repercussions th at will last into \nadulthood (Suris et al., 2004). Some of these aspects of adolescent development, particularly relating \nto females, will now be discussed in further detail. This will provide context for the thesis, in which the \nexperience of menstruation and endometriosis during this period of adolescent develo pment is of \ninterest. \n \n2.4.1 Biological Development \nThe key biological change associated with adolescence is puberty; the physical change and sexual \nmaturation occurring during the transition from childhood to adulthood. Puberty  spans over a \nnumber of years (Dahl, 2004), and is initiated by the release of hormones into the body, which can \noccur up to 2 years before any observable changes are seen (Hauser-Cram et al., 2014) . In females, \nthese observable changes begin between ages 8 and 13 years, with the development of breast buds, \nalso known as ‘thelarche’. An average of 2.5 years later, the female will begin her periods, known as \n‘menarche’. At this point, females have reached full reproductive capacity (Emmanuel and Bokor, \n2018).  \n\n14 \n \nThere can be considerable variation in the onset and timing of puberty. The average age of menarche \nvaries between countries; with recent estimates suggesting it is 12.9 years in the UK (Millenium Cohort \nStudy, 2016), 12.3 years in Australia (Armour et al., 2021a) , and 12. 25 years in the USA (Biro et al., \n2018). Several factors contribute to these variations. High body weight and low socioeconomic status \nare associated with earlier menarche (Kelly et al., 2017) . Differences in menarcheal age have \nconsistently been found between people of diff erent races and ethnicities. Most documented is the \nearlier age of menarche of Black girls compared to White girls (Anderson et al., 2003; Chumlea et al., \n2003; Herman-Giddens et al., 1997) . For example, Herman-Giddens et al. (1997)  found the average \nage of menarche in Black girls in the USA was 12.16 years, compared to 12.88 years for White girls. \nGirls of Asian ethnicity may also be more likely to enter menarche earlier than White girls (Kelly et al., \n2017). The terms race and ethnicity are often used interchang eably in social science research, but \noften both  refer to differences in physical (race) and cultural characteristics.  However, the link \nbetween ethnicity/race and menarche can be over -simplified, as ethnic /racial inequalities, such as \nmaterial disadvantage and adiposity (obesity), can also be a factor in observed differences  (Kelly et \nal., 2017). \nApproximately 9.5% of girls begin to menstruate before the age of 11.2 years (Kelly et al., 2017), and \n90% of girls have reached menarche by 13.75 years (Chumlea et al., 2003). Due to the variations in the \ntiming of puberty  as illustrated, adolescents may have very different experiences to their peers \n(Petersen et al., 1995), and therefore may find it difficult to make comparisons with them.  \n \n2.4.2 Cognitive Development \nDuring adolescence, there is an increase in the capacity to use abstract reasoning an d to think \nhypothetically, a stage in cognitive development which Piaget terms ‘formal operational thinking’ \n(Piaget, 1952/1936). Adolescents begin to ‘think about thinking’ (Kuhn and Franklin, 2008). They have \nmore enhanced decision making skills than children, and are better at making logical and reasonable \nchoices (Dahl, 2004).  Their learning becomes more specific, and focuses on contexts which relate to \npotential career choices (Eiser, 1993). Their cognitive capacities have reached adult levels by middle \nadolescence (Petersen et al., 1995), however, they are more prone to making emotionally influenced \ndecisions, which can lead to erratic and reckless behaviour (Dahl, 2004).  \nAccording to Elkind (1967) , adolescence is a period of “egocentricism”. Adolescents’ ability to \nconceptualise their own thought also brings with it the ability to think about other’s thoughts. This \nmay pose problems, however, as adolescents may fail to differentiate between the foc us of others’ \n\n15 \n \nthoughts, and those which are central to their own thinking. This failure to differentiate is the crux of \nadolescent “egocentricism” argues Elkind, because the adolescents become convinced that they are \nthe object and concern of others’ thoug hts. They believe that other people are as preoccupied with \ntheir appearance and behaviour as they are. They therefore anticipate others’ reactions; that they will \nbe admiring or critical, and this can account for the self -consciousness, which is particula rly \ncharacteristic of early adolescence. While Elkind (1967) suggests that this ‘imaginary audience’ starts \nto dissipate during mid-adolescence, Frankenberger (2000) found evidence that this can carry on into \nearly adulthood. \n \n2.4.3 Psychosocial Development \nThe increased capacity in abstract thinking allows adolescents to begin thinking more about \nthemselves, their futures, and how they compare to others (Petersen et al., 1995) . Adolescence is \noften conceptualised as a time of identity formation, which is a key part of this life stage according to \nErikson’s theory of psychosocial development (1968). Adolescent identities can be considered as “the \nways in which young people view themselves and make sense of their lives” (Robb, 2007: 109). These \nidentities are negotiated against the social and cultural milieu in which development occurs, and it is \ntherefore not merely an internal process (Erikson, 1968).    \nThere are many aspects of identity including gender, ethnicity, class, and sexuality, among others. \nGender is a central aspect of the developing identity; in transitioning towards adulthood, one is \nbecoming a young man or a young woman (Robb, 2007) . By considering gender as an aspect of \nidentity, other key aspects of identity, such as sexuality and attitudes towards the body, can also be \nunderstood. For example, Aapola et al. (2005)  suggest that in comparison to young men, young \nwomen’s bodies may be subject to a greater extent of objectification. They may therefore feel more \npressure to look good, and become concerned with their physical appearance, health, and fi tness \n(ibid). Although, it must be acknowledged that following advances in social media (i.e. Facebook , \nInstagram, Snapchat, etc. ) since this work was authored, concern with physical appearance is also \nrising amongst young men (Fardouly and Vartanian, 2016) . What it means to be a young woman is \nconstantly changing, as it is shaped by historically changing social contexts. However, even if the \nhistorical time frame and social context remain constant, constructions of being a young woman can \nshift, as gender also intersects with social identities such as ethnicity and class (Aapola et al., 2005; \nRobb, 2007). \n\n16 \n \nWhile adolescents attempt to grasp these aspects of their identity, they rarely do so in isolation. They \nare part of their family system, as well as a growing peer network, which may include friendships, \ngroups, and romantic relationships (Hauser-Cram et al., 2014) . Interactions with these social groups \nwill help form their morals and values, and will contribute to the ir developing sense of autonomy \n(Erikson, 1968).   Close relationships with parents continue during adolescence (Petersen et al., 1995), \nand parents remain a valuable source of support. Support may differ between parents; mothers are \noften perceived as being the providers of emotional support, and fathers as providing in formational \nand/or material support (Steinberg and Silk, 2002). However, parent-child relationships do transform \nduring adolescence, as more time is spent with peers, and less with parents (Smetana et al., 2006) . \nAdolescents may still seek parental advice over long -term issues (i.e. career choices), but peers will \ninfluence their style, opinions, beliefs, and behaviour (Petersen et al., 1995; Smetana et al., 2006).  \nPeer relationships are considered to be one of the most important aspects of adolescence (Brown and \nLarson, 2009).  Friendships take on new levels of intensity; peers are no longer simply play-mates, but \nare people who adolescents trust, converse intimately with, and feel understood by (Buhrmester, \n1996). These relationships also differ fr om parental relationships because they enable feelings of \nequality, and more room for autonomy. Friends become a key source of support during adolescence, \nwhich can be more significant than parental support by mid -adolescence (Bokhorst et al., 2010) . \nFriendships can also influence mental health; Ueno (2005) found that a higher number of friends \nduring adolescence was associated with fewer depressive symptoms. This relationship was mediated \nby a sense of belonging, which in itself is a key aspect of identity development, associated with feelings \nof security and attachment (Thomson, 2007). Positive friendships can protect the well-being and self-\nesteem of adolescents during periods of major adjustment or transition (Corsano et al., 2006). Girls in \nparticular seek support from their friends during times of stress, and such support is associated with \nincreased levels of self -esteem (Rueger et al., 2010) . However, there can also be a ‘dark side’ of \nadolescent friendships, including jealousy, bullying, and exclusion (Smetana et al., 2006), which may \nnegatively impact self-esteem.  \nSelf-esteem, or “the extent to which we value or feel pos itively about the self” (Bowker, 2006: 215), \ncan be vulnerable during adolescence, while attempting to grasp several developmental changes. Low \nself-esteem in early adolescence can predict depression in both late adolescence and early adulthood \n(Masselink et al., 2018), and may also be associated with problems such as poor school performance, \nrelationship difficulties, and substance abuse (Hazen et al., 2008) . Self -esteem generally increases \nduring adolescence (Erol and Orth, 2011), however there are some gender differences in self-esteem \nlevels, with girls showing poorer self-esteem than boys (Bolognini et al., 1996). The number of domains \non which one bases their self-esteem increases from childhood to adolescence (Harter, 1988), and the \n\n17 \n \nview of the self therefore becomes more cognitively complex (Bowker, 2006). Some domains which \nare important to adolescents’ self -esteem are physical attractiveness, peer acc eptance, academic \nperformance, and athletic competence (Harter and Whitesell, 2001; Petersen et al., 1995).  \n \n2.4.3.1 Romantic Relationships \nChanging peer relationships lead to the instigation of dating and romantic relationships, which form a \nsignificant aspect of an adolescent’s social world (Bouchey and Furman, 2003). Romantic relationships \nbegin in early adolescence, but change in duration, frequency, and quality with increasing age, by \nwhich time romantic partners show more behaviours indicative of commitment and intensity (Carver \net al., 2003) . In addition, by older adolesce nce, those in a relationship might report their partner’s \nsupport more highly than that of their friends and parents (Seiffge-Krenke, 2003). \nAs adolescent relationships progress, they become more emotionally and sexually intimate (Meier and \nAllen, 2009). In addition to social changes such as spending more time together, this is influenced by \nbiological developments, such as the development of secondary sexual characteristics and increased \ninterest in sex (Petersen et al., 1995). Sexual encounters in adolescence are not exclusive to those in \na relationship;  over half of adolescents have had sexual partners with whom they are not in a \nrelationship or dating (Manning et al., 2006) . Relationship experience during adolescence can be \nassociated with subsequent relationships du ring young adulthood (Meier and Allen, 2009) , and the \ncontent and quality of adolescent relationships can influence developmental trajectories (Collins, \n2003). \n \n2.4.4 Summary \nAdolescence is a transitional period, in which rapid biological, cognitive, and psychosocial changes \noccur. The physical changes associated with puberty are complete by mid -adolescence, however \ncognitive and psychosocial development can continue into young adulthood. The negotiation of this \ndevelopmental period will have repercussions extending long into adulthood. \n \n2.5 Adolescents Living with Chronic Illness \nThe occurrence of a chronic condition during adolescence can have an effect on developmental \nprocesses, including identity development, autonomy from parents, peer relationships, and self -\n\n18 \n \nesteem (Suris et al., 2004) . Furthermore, developmental changes associated with adolescence can \nthemselves impact on the course of disease (Suris et al., 2004) . Previous research with adolescents \nwith chronic illness (AWCI) draws on Bury’s (1982) concept of ‘biographical disruption’ to understand \nhow young people navigate a chronic illnes s alongside these developmental transitions (Bray et al., \n2014; Grinyer, 2007; Kirk and Hinton, 2019). \nBury (1982) asserts that chronic illness is a form of ‘biographical disruption’, which dominates and \ndisrupts a person’s life, challenges their ‘taken -for-granted’ bodily assumptions and behaviours, and \nleads to the re-thinking of their biography and self-concept. Bury’s work was based on research with \nadults with a diagnosis of rheumatoid arthritis, and there is debate about whether it over -simplifies \nthe diversity of experience associated with chronic illness (Williams, 2000b) . Therefore, Williams \n(2000b) argues the need to build on this theory, with particular focus on the timing and context of an \nillness. In her research with adolescents with cancer, Grinyer (2007) found that the experience of \nillness during adolescence and young adulthood poses a distinct effect, which results from \nfundamentally altered life trajectories at a crucial transitional moment. While reiterating that this does \nnot undermine the experience of illness in other age groups, she summarises that “ this is a life stage \nwhen independence and identity are  fragile, educational milestones are crucial,  financial resources \nare limited, physical appearance is central, and relationships  and fertility are thrown into crisis.  The \ndisruption of any one of these factors can have an ongoing impact, resulting in a chronic effect.” (275: \nGrinyer, 2007).  \nA chronic illness during adolescence may challenge movement towards autonomy and independence, \nand in particular, young people can become increasingly dependent on their parents (Eiser, 1993; Yeo \nand Sawyer, 2005). Parents can be important allies in managing their disease and treatment (Taylor \net al., 2008) . They are also a significant source of emotional support, and are often relied upon for \npractical support (i.e. travel to appointments, financial support: Cartwright et al., 2015; Kyngäs, 2004). \nHowever, these relationships can also be put under strain; parents can be restrictive a nd over -\nprotective, challenging an adolescents desire to be independent (Kyngäs, 2004; McEwan et al., 2004).  \nFor some illnesses, these restrictions may be necessary though; McEwan et al. (2004)  found that \nadolescents with epilepsy reported restrictions when it was unsafe to do certain activities on their \nown, in case they had a seizure. While they knew these restrictions were necessary, they questioned \nwhether they would ever be able to achieve autonomy, describing potential challenges of moving out \nof home and living alone. \nAdolescents can experience challenges seeking medical help. Adolescence represents a unique life -\nstage for medical treatment (Grinyer, 2007), unless specialist adolescent services are set up, then \n\n19 \n \nclinicians may only be used to dealing directly with adults, as either the patients themselves, or the \nparents responsible for their children’s care (Christie and Viner, 2005) . This poses issues for AW CI; \nthey can feel that discussion is directed towards their parents rather than themselves, or alternatively \nclinicians may use complex terminology that they are unable to understand (Jones et al., 2011) . In \naddition, adolescents have indicated a fear of being judged whe n asking about topics that are \nimportant to them (i.e. alcohol consumption: McEwan et al., 2004) , or lack of clinician awareness of \nwhat factors maybe important to them (Grinyer, 2007) . Finally, a strict medical regime can be \nconflicting with key  aspects of adolescent life, such as maintaining peer relations and developing a \nself-image (Suris et al., 2004). \nSpending time with friends, and gaining their acceptance, is a critical part of adolescence, however a \nchronic illness may jeopardise this (Taylor et al., 2008) . Some illnesses can limit the amount of time \nadolescents spend with their peers, due to lengthy hospital stays, school absences, or restrictions on \nphysical activity. Woodgate (1998)  found that adolescents weren’t included in certain physical \nactivities due to their illnesses.  Adolescents have also reported name -calling, bullying, or feeling \nisolated due to their illness (Kirk and Hinton, 2019; McEwan et al., 2004; Winger et al ., 2014) . \nDisclosing illnesses to friends can be beneficial in eliciting support (McEwan et al., 2004), particularly \nfor girls (Cartwright et al., 2015) . However, adolescents have reported that others are unable to \nunderstand their illnesses, or to appreciate what it is like to live with them (Cartwright et al., 2015; \nWinger et al., 2014; Woodgate, 1998). These issues with peer relationships have been associated with \nfeelings of isolation, and beliefs of being different to peers (McEwan et al., 2004; Winger et al., 2014; \nWoodgate, 1998). Adolescents can therefore seek comfort in talking to those with the same illness, \nwho are able to understand (Cartwright et al., 2015; Coyne et al., 2018; Kirk and Hinton, 2019). \nSchool forms a significant part of adolescent life, which can be affected by a chronic illness. The social \naspect of school life may be affected by prolonged or repeated absences or bullying. Winger et al. \n(2014) interviewed adolescents with chronic fatigue syndrome (a chronic disease in which persistent \nand unexplained mental and physical fatigue is experienced) , who described feeling ‘shut out’ or \nforgotten by friends after school absences, and found returning to schoo l to be quite a negative \nexperience. School absences might also impact academic achievement (Suris et al., 2004; Taylor et al., \n2008), which, along with restrictions imposed by certain chronic illnesses, can cause additional worry \nover limited career choices in the future (Cartwright et al., 2015; Woodgate, 1998). \nIn addition to employment prospects, AWCI may fa ce concerns about other implications of their \ncondition in the future. For example, Cartwright et al. (2015)  found that adolescents with juvenile \narthritis (inflammatory diseases characterised by pain, swelling and stiffness of the joints)  were \n\n20 \n \nworried about the long -term im pact of medication, such as the side -effects and impacts on their \nlifestyle. Adolescents may also worry about their condition developing or worsening in the future \n(Woodgate, 1998). Finally, some chronic illnesses might cause adolescents concern towards personal \nplans, including relationship prospects and having children (Eiser, 1993). They may worry about finding \na partner who will be able to take on their illness, and all the extra ‘baggage’ that might entail (Coyne \net al., 2018) . In addition, they may have concern s about their ability to have children (Coyne et al.,  \n2018; Jones et al., 2011), and also potentially passing their illness on to their children (McEwan et al., \n2004).  \nDespite these concerns about their future, AWCI have also displayed tendencies towards acceptance \nof their condition, and hope for their future, particularly in finding a way of managing their condition \n(Kirk and Hinton, 2019; McEwan et al., 2004; Winger et al., 2014). Kirk and Hinton (2019) described a \n‘reconfigured future’, in which adolescents’ future biography would now need to inco rporate the \npotential effects of their chronic illness. This is somewhat aligned to Bury’s (1982) notion of chronic \nillness as a ‘biographical disruption’, which threatens everyday life, and causes a re -examination of \nthe expectations and plans for the future that an individual holds. Coyne et al. (2018)  found some \nsupport for this in young adults with chronic kidney disease (who have received a transplant), some \nof whom felt the need to fit commitments, such as career plans, around their plans for having children, \nnow that their fertility was threatened. \nWhile there are many recurring themes amongst th is literature exploring AWCI, it must be \nacknowledged that different illnesses will be experienced differently. Some illnesses pose more \nrestrictions than others, some require more medication, or a greater level of hospital care, and some \nwill affect future health in different ways (Eiser, 1993). These factors will all impact on the illness \nexperience, including the level of dependence on parents, impact on peer relationships, and thoughts \nabout the future. In addition, much of the research cited thus far is on chronic illnesses which affect \nboth male and female adolescents, however there is little focus on the effect of gender on the illness \nexperience. There is some evi dence that the social constructions of femininities and masculinities \nmight affect how adolescents live with a chronic illness. For example, Williams (2000a) found that girls \nwere more likely to incorpora te their illness into their social identity, i.e. by telling people about it, \nwhereas boys made attempts to keep their illness hidden. Furthermore, when searching the literature \nfor adolescents’ experiences of chronic illness, there was little research on the experience of gendered \nillnesses (i.e. those associated with one gender) , or those typically occurring within just one gender, \nsuch as endometriosis. \n\n21 \n \nIn addition, when considering the impact of chronic illness during adolescence,  features of Erikson’s \ntheory of psychosocial development (Erikson, 1968), such as identity development and the search for \nindependence, are often reflected upon in the literature . These are relevant to the study of chronic \nillness during adolescence, however, for this thesis, where the focus is adolescent girls, it is important \nto highlight the potential androcentric bias of some of the assumptions of th at theory. For example, \nSorell and Montgomery (2001)  discuss how the idea th at identity formation results from obtaining \nindependence from others is a stereotypically masculine notion, whereas women often ground their \nsense of self and identity in their relationships with others. Therefore, by focusing solely on the \nexperience of illness in females, some findings may differ from those outlined in this section. \nFurthermore, endometriosis  only affects females ( except in very rare cases 1), and so the illness \nexperience might vary due to it being a gendered illness.  \nBefore exploring what is already known about the experience of endometriosis, attention will turn to \ntheories and research concerned with menstruation. This is particularly relev ant when considering \nendometriosis, as painful and heavy periods are symptoms of endometriosis that are commonly \nexperienced. Therefore, the way that society and individuals construe endometriosis is related to the \nattitudes and associations that they hold for menstruation (Denny and Weckesser, 2019). \n \n2.6 Menstruation \nThe menstrual cycle is a physiological process, controlled by neuroendocrine mechanisms and \nregulated by hormones, yet it can also be considered a biopsychosocial phenomenon, as it both \naffects, and is affected by, a woman’s personal context (Chrisler, 2017) . Chri sler explains that \n“[W]omen’s behaviour is affected by beliefs and attitudes, which are in turn affected by physiological \nexperiences. Furthermore, women’s experiences occur, our beliefs are learned, and our attitudes are \nformed within a cultural context” (Chrisler, 2017: 193) . Therefore, while the menstrual cycle is a \nbiological process which is common among women, there is a diversity of experiences of such between \nwomen, which results from differences in sociocultural influences on attitudes, beliefs, and behaviour \n(Chrisler, 2017; Newton, 2016). Such influences will affect the female’s experience of menstruation, \nfrom menarche through to menopause. \nMenstruation for most women spans over a large proportion of their lives (Costos et al., 2002) , and \nsignifies good health, biological maturity, and the ability to bear children (Chrisler, 2017). Menarche \nis therefore a significant life event, a ‘status passage’  (see Newton, 2012) yet it is celebrated by only \n \n1 See review by Rei et al. (2018) Detailing the extremely rare circumstance of male endometriosis. \n\n22 \n \nhalf of the cultures around the world (Paige and Paige, 1981).  It often invokes a negative emotional \nresponse, despite being regard ed as part of ‘becoming a woman’ (Barrington et al., 2021) .  \nAdolescents primarily convey negative discourse towards menstruation, depicting annoyance, \nembarrassment, shame, and secrecy (Beausang and Razor, 2000; Burrows and Johnson, 2005; Jackson, \n2019; Jackson and Falmagne, 2013; Plan Internat ional UK, 2018). There isn’t a co mplete absence of \npositive dialog concerning menarche and menstruation , which can be associated with pride, relief, \nand ‘growing up’ (Barrington et al., 2021), however, negativity often dominates. To help unpack the \nsource of such negativity, the following sections will explore the secrecy, stigma, and taboo associated \nwith menstruation, and how these affect the experience of menstruation for adolescents. The final \nsection addresses issues related to adolescents’ menstrual health, and the experience of such issues. \n \n2.6.1 Attitudes, Stigma, and Taboo Towards Menstruation  \nMenstruation is often viewed negatively, and is shrouded in secrecy, stigma, and taboo (Costos et al., \n2002; Johnston-Robledo and Chrisler, 2013). Johnston-Robledo and Chrisler (2013) use the concept of \nstigma proposed by Goffman (1963), to argue that menstruation is a stigmatized condition. According \nto Goffman (1963), the term stigma is used to refer to a deeply discrediting attribute. The word derives \nfrom the Greeks, who would visibly brand criminals and slaves with a mark, to convey their status as \nan undesirable character; one that should be avoided. Goffman differentiates between three types of \nstigma; ‘abominations of the body’ (physical deformities), ‘blemishes of individ ual character’ and \n‘tribal stigma’ (i.e. race, religion, social class, etc.). Johnston-Robledo and Chrisler (2013)  argue that \nmenstrual blood could be considered a mark which fits into all three categories. The rituals associated \nwith concealing menstruation infer that the blood is aversive, an abomination. A stain caused by the \nleaking of menstrual blood may therefore be perceived as a flaw in one’s character, an inability to hide \nher menstruating status to others. This further extends to even mere reminders of menstrual blood, \nsuch as visible sanitary products. Finally, menstrual blood is indicative of a tribal identity, that of being \nfemale, and different to males. \nThe taboo surrounding menstruation may be partly due to beliefs about menstrual blood; at different \ntimes and across cultures, it has been considered both magical and dangerous (Chrisler, 2017; Costos \net al., 2002; Douglas, 1966) . Notions of menstrual blood being magical stem from a time when the \nphysiology of menstruation was poorly understood, and it was therefore a mystery how women could \nbleed for 5 days without being weakened or killed (Chrisler, 2017; Douglas, 1966) . Menstrual blood \nbeen considered dangerous, able to contaminate crops, spoil food, etc. (Costos et al., 2002). Scientists \nhave even attempted to demonstrate that menstrual blood is a toxin (Johnston-Robledo and Chrisler, \n\n23 \n \n2013). Perhaps resulting from these beliefs, many groups have i mposed restrictions on women’s \npractices during menstruation, such as not bathing, swimming, washing their hair, engaging in sexual \nintercourse, or preparing food, and some are required to stay in separate ‘menstrual huts’ (Bhartiya, \n2013). While there is no scientific justification for these restrictions, myths are still evidenced in \nwomen’s and girls’ understandings of, and practices during, menstruation; perhaps because they get \npassed down through generations (Costos et al., 2002; Koff and Rierdan, 1995a; Uskul, 2004). \nThe stigma and taboo of menstruation is transmitted and upheld by several sociocultural routes, such \nas advertisements, educational sources, media, and euphemisms (Johnston-Robledo and Chrisler, \n2013). Television adverts convey menstruation as dirty, and something to be kept discreet;  sanitary \nproducts are marketed to maintain freshness and avoid any embarrassment caused by potential \ndiscovery (i.e. ‘leaking’). Furthermore, such adverts have historically used blue rather than red liquid \nto portray menstrual fluids, and words such as menstruation or blood are rarely used (O'Keefe, 2006). \nOnly very recently, in 2017, a UK sanitary product was marketed for the first time using red menstrual \nblood in the TV advert (see George, 2017) . The focus of freshness and concealment subconsciously \nreinforces menstruation as a ‘hygienic crisis’, something that is dirty and needs to be controlled \n(Jackson and Falmagne, 2013) . This is also reiterated in the terminology used to describe menstrual \nproducts including ‘sanitary towels’ and ‘feminine hygiene products’.  \nThe media adds to the stigmatization of menstruation, often representing it negatively in TV \nprogrammes, films, and books (Burgum, 2018). One such example is in Steven King’s (1974) book \n‘Carrie’, and the film of the same name by Brian de Palma (1976), in which Carrie’s menarche marked \nthe onset of her telekinetic rampage. Mentions of menstruation in film and TV are often used as a way \nof shaming female characters, or as jibes against a man’s masculinity (Burgum, 2018).  \nA more indirect avenue throu gh which menstrual stigma is conveyed is the silence surrounding \nmenstruation (Johnston-Robledo and Chrisler, 2013). Menstruation is considered a taboo subject, and \nLaws (1991) proposes the notion of “menstrual etiquette”, to encompass the communication and \nconcealment taboos present in British cult ure. These taboos refer to the idea that menstruation \nshould be kept hidden, and not discussed, particularly with men. Support for the communication \ntaboo comes from the numerous euphemisms used for menstruation; Clue (2016) found that there \nare over 5000 euphemisms for menstruation used worldwide, spanning many cultures. In her UK \nbased study, Newton (2016) found the most popular examples used by both men and women included \n“period”, “on the rag”, “time of the month”, “on the blob”, “painters and decorators”, and “the curse”. \nThe use of euphemisms allow people to discuss menstruation more comfortably (Griffith, 2017; \nNewton, 2016), but simultaneo usly uphold the stigma surrounding menstruation, as if it were not \n\n24 \n \nstigmatised, there would be no need to refer to it by another name (Johnston-Robledo and Chrisler, \n2013). \nEducation and information sources further promote the negativity surrounding menstruation. Many \ngirls learn about menstruation from their mothers, who often encourage notions of silence and \nconcealment, and may also pass on myths and taboos (Beausang and Razor, 2000; Costos et al., 2002). \nEven if mothers do provide positive messages, they may take their daughters aside to have ‘the talk’, \nseparate from other family members, which reinforces menstruation as something to be concealed \n(Kissling, 1996). School is also a key source of education about menstruation, however messages often \nlack positivity (Beausang and Razor, 2000; Cooper and Koch, 2007). Upon visiting a school during their \nmenstrual education provision, Newton (2016 ) noted that the topic was introduced as a “messy, \nsensitive subject”, and girls were discouraged from talking about personal experiences. From the start, \nit was therefore outlined as a topic to be kept secret. Again, the segregation of girls from boys during \nmenstrual education reinforces embarrassment around menstruation (Beausang and Razor, 2000) , \nand strengthens the notion that it should not be discussed in front of males. Educational booklets have \nalso been found to contain much more emphasis on negative aspects of menstruation compared to \npositive aspects, the only one of which that was mentioned was growing up (Erchull et al., 2002).  \n \n2.6.2 Adolescents Experiences of and Attitudes Towards Menstruation \nThe secre cy, stigma, and taboo surrounding menstruation can have consequences for girls’ and \nwomen’s experience of, and behaviour towards menstruation, and their well-being. Given the cultural \nrepresentations of menstruation, menarche itself is often approached with some uncertainty (Chrisler, \n2017). Unlike other pubertal changes which occur gradually, menarche is a sudden and noticeable \nevent, and therefore women often maintain quite vivid memories of it throughout their lives (Chrisler, \n2017). Young women describe mixed reactions  towards menarche such as relief, it not being a ‘big \ndeal’, fear, and embarrassment (Lee, 2008; Newton, 2016) . These reactions are affected by the \neducation and messages they receive about menstruation. Many girls describe being unprepared for \nmenarche (Beausang and Razor, 2000; Plan International UK, 2018), particularly when the education \nthey receive is lacking. Those who are less prepared tend to recount more negative feelings (Beausang \nand Razor, 2000), and those who are more prepared have shown more positive reactions (Marván and \nMolina-Abolnik, 2012). Newton (2016) found that teenagers associated the onset of menarche with \nphysical maturity or growing up, and thus saw it as a social statu s changer. Conversely, Jackson and \nFalmagne (2013) found that some stated it was “weird”, and they were too young to feel like a woman \nat the age of 13 or 14. The timing of menarche can affect reactions to menarche; Marván and Alcalá-\n\n25 \n \nHerrera (2014) found that adolescent girls with early menarche (<11 years) felt scared , worried, and \nless prepared, and those with late menarche (13+ years) were more likely to feel happy or excited \nabout it. However, UK research suggests that a later onset of menarche may be stigmatising for young \nwomen (Newton, 2016). \nNegative discourses towards menstruation and menarche have been conveyed by adolescents in \nqualitative research. Plan International UK (2018)  conducted focus groups with young people in the \nUK and found that the language used when di scussing menstruation was overwhelmingly negative. \nWord such as “annoying” and “inconvenient” were commonplace, and girls expressed fear and \nembarrassment, particularly over potential “leaking”. Many said they felt awkward about talking to \nmen and boys about menstruation. Burrows and Johnson (2005) found that girls (aged 12 – 15) in the \nUK conveyed shame towards menstrual blood, and their disc ussion about periods was so negative, \nresearchers asked if there was anything positive about menstruation, to which only one girl \nresponded, albeit in an apologetic way, that it made her feel happy and lively in the middle of her \ncycle. Such discourses depicting embarrassment, shame, and secrecy about menstruation, have been \nfurther highlighted in qualitative research conducted with adolescents/young women in the USA \n(Beausang and Razor, 2000; Cooper and Koch, 2007; Jackson and Falmagne, 2013; Lee, 2008).  \nThese discourses reflect no tions of secrecy, stigma, and taboo about menstruation, as outlined in \nsection 2.6.1. In particular, the societal message of menstruation as something to be hidden has been \nconsistently evidenced in research with adolescent girls, who adopt a variety of methods to maintain \nconcealment of menstruation. Managing menstruation at school forms a significant part of these \nnarratives, and girls have described hiding menstrual products, limiting clothing choices (avoiding \nwearing white), and refraining from physical activities to conceal menstruation (Burrows and Johnson, \n2005; Jackson and Falmagne, 2013; Newton, 2016; Plan International UK, 2018). Girls have expressed \nanxiety about others at school, particularly boys, finding their pads or discovering they were ‘on’ \n(Burrows and Johnson, 2005), and when discovery does o ccur, i.e., boys finding pads/tampons, they \nhave reported being teased by them (Burrows and Johnson, 2005; Newton, 2016). Occurrences such \nas these can heighten girls’ anxieties around discovery and strengthen their beliefs that menstruation \nshould be concealed.  \nIn addition to concealment, research has also found the tendency for the communication taboo to be \nupheld by both girls and women. Jackson and Falmagne (2013) found that many young women in their \nUSA sample stated that menstruation was something they would not discuss as girls. If they did, they \nwere often ‘commiserating’ or receiving support from one another about the negative aspects of \nmenstruation, such as how ‘annoying’ it is, rather than celebrating it. Cooper and Koch (2007)  also \n\n26 \n \nfound this tendency to only talk about menstruation as a complaint. When menstruation is discussed \nby adolescent gi rls, and particularly with males, euphemisms are used as a way to make it less \nawkward (Newton, 2016). \nOne of the conse quences of the communication taboo is a lack of thorough education or \nunderstanding about menstruation. Beausang and Razor (2000) found that the young women in their \nUSA study described the overtone of discomfort when given MHE at school; videos were used rather \nthan it being discussed by teachers, and girls subsequently felt too embarrassed to ask questions. \nMothers have also been described to display embarrassment discussing menstruation, the result of \nwhich is that they may not provide adequat e information or answer their daughter’s questions \n(Beausang and Razor, 2000; Cooper and Koch, 2007) . Through such practices, girls may not fully \nunderstand about menstruation or what is happening to them at menarche, and may also be unaware \nabout menstrual related medical conditions (Beausang and Razor, 2000; Cooper and Koch, 2007).  \nThe stigma and taboo of menstruation can indirectly impact the health of women and girls. The lack \nof understanding about menstruation, as well as th e lack of awareness about menstrual related \nconditions, can mean that if problematic symptoms occur, they are not recognised and investigated \n(Markovic et al., 2008). Furthermore, by not talking to one another about menstruation, women and \ngirls lack the opportunity to compare their experiences with others, and therefore to identify any \nproblems they may be having (Ballard et al., 2006; Markovic et al., 2008) . They may also be hesitant \nor embarrassed to discuss menstruation with doctors, and consequently may not receive treatment \nor a diagnosis for any menstrual related conditions (Burrows and Johnson, 2005; Seear, 2009a). Finally, \nthe stigma associated with menstruation is often used as a way to market menstrual suppression \nproducts (Johnston-Robledo et al., 2006; Mcmillan and Jenkins, 2016) , however by artificially \ncontrolling the menstrual cycle, menstrual irregularities may be concealed or missed. \nMuch of the discussion in this section so far has focussed on qualitative research, however several \nquantitative measures assess people’s attitudes towards menstruation. A commonly used measure is \nthe Menstrual Attitudes Questionnaire (MAQ: Brooks -Gunn and Ruble, 1980) , which measures \nmenstrual attitudes across many dimensions, including menstruation as bothersome, debilitating, \nnatural, etc. There are differ ent versions of the questionnaire depending on who is completing it \n(women, men, pre - and post -menarcheal adolescent girls etc.). Adolescent girls completing this \nmeasure in the USA have rated menstruation as more debilitating than those older than them (Brooks-\nGunn and Ruble, 1980), perhaps the most negative of the attitudes measured (Hoerster et al., 2003). \nAnother measure, designed specifically for adolescents, is the Adolescent Menstrual Attitude \nQuestionnaire (AMAQ: Morse et al., 1993) . Using this measure with a sample of 405 Mexican \n\n27 \n \nadolescent girls, Marván and Molina -Abolnik (2012)  found that negative feelings towards \nmenstruation were most common, followed closely by secrecy, and finally positive feelings.  \nWhen searching the literature for adolescents’ attitudes towards menstruation, there appeared to be \na dearth of recent research in this area in the Global2 North, particularly quantitative research. Much \nresearch has been and continues to be conducted within the Global South. However, attitudes \ntowards menstruation may differ between countries/continents because of different cultural and \nreligious beliefs, as well as societal factors (Bramwell and Zeb, 2006; Hoerster et al., 2003). Attitudes \ncan also vary according to one’s own menstrual experiences. Brooks-Gunn and Ruble (1980)  found \ncorrelations between perceptions of menstruation as “debilitating” and high er symptom scores for \npain, negative affect, and concentration. They also found that less severe symptomology was reported \nby those who denied any effects of menstruation. More recently, Aşcı et al. (2015) found a higher rate \nof complaints about the severity and symptoms of premenstrual syndrome (PMS) in those with \nnegative menstrual attitudes. In studies like these, it is not possible to tell whether worse menstrual \nsymptoms lead to more negative attitudes, or if the negative attitudes lead to worse perceived \nsymptoms, perhaps because symptoms are given more attention (Chrisler, 2017). It may wo rk both \nways; they may both influence each other. Research has however shown that attitudes towards \nmenstruation can change in adolescent girls from pre-menarche to post-menarche (Brooks-Gunn and \nRuble, 19 82), suggesting that individual experience might play some role. However, menstrual \nexperience does not account fully for menstrual attitudes, as those with no experience of \nmenstruation, i.e. premenarcheal girls and adolescent boys, have displayed well  defined negative \nattitudes (Clarke and Ruble, 1978) . This may be due to the messages and socialisation processes \nsurrounding menstruation.  \n \n2.6.3 Menstrual Health in Adolescence \nThis section provides an overview of the patterns of menstruation observed during adolescence (i.e. \ntiming of menarche, regularity of menstruation, menstrual symptoms, etc.) and addresses some of \nthe menstrual health issues that adolescents might  encounter. The experience of such issues, as \nevidenced in qualitative and quantitative research, is also discussed.  \nThe average age of menarche in the UK is 12.9 years, however, the timing of menarche can vary \nconsiderably depending on several factors including ethnicity, body weight and socioeconomic status. \n \n2 The terms Global North and Global South group countries according to their socio-economic and political \ncharacteristics. The Global North incorporates Europe, North America, Australia, and New Zealand. The Global \nSouth identifies regions within Latin America, Asia, and Africa. \n\n28 \n \nApproximately 9.5% of girls begin to menstruate before the age of 11.2 years (Kelly et al., 2017), and \n90% of girls have reached menarche by 13.75 years (Chumlea et al., 2003) . Once menstruation has \ncommenced, it can take adolescents some time to settle into a regular menstrual cycle. During the \nfirst year after menarche, it is common for cycles to be irregular, but 80%  fall within 21 to 45 days \nduration, with menstrual bleeding lasting between 2 and 7 days (Slap, 2003). By the third year after \nmenarche, 95% of cycles fall within this range, and an  individual’s stable cycle length is usually \nestablished by the sixth year (Slap, 2003).  \nIt is common for adolescents to report menstrual issues including irregular cycles , amenorrh ea, \nmenorrhagia, and dysmenorrhea. The prevalence of irregular cycles amongst adolescents has varied \nin previous research, with studies reporting a prevalence of 9% (Rigon et al., 2012) , 23.1% (Agarwal \nand Venkat, 2009) , and 30.5% (Parker, 2006) . Variations may be due to the different age groups \nsurveyed; those in the Rigon et al. (2012)  study had a higher average age, and Agarwal and Venkat \n(2009) found that increasing age was associated with decreased prevalence of cycle irregularity. \nAdolescents with polycystic ovary syndrome (PCOS), who experience irregular cycles, describe feeling \n“distressed” and “different” due to the irregularity (Jones et al., 2011) . They also stated they find it \ndifficult to know when menstruation might occur, and so must always be prepared (Ibid). Young \nwomen in research by Donmall (2013), who experience irregular cycles, described a fear of being \n‘caught short’, prompting some to take  the contraceptive pill. They consistently described this \nsymptom as “annoying”. \nAmenorrhea, or the absence of menstruation, is defined as primary if menses have not commenced \nby age 16, and secondary if three or more menstrual periods are missed any time after the first period \n(Slap, 2003). Primary amenorrhea is rare, occurring at a rate of approximately 2%, however this figure \nrises to 7.3% in those who are elite athletes (Torstveit and Sundgot -Borgen, 2005) . Secondary \namenorrhea also occurs infrequently, in approximately 4% of the population, and is linked to factors \nsuch as athleticism, eating disorders, and hormone imbalance (Popat et al., 2008) . Amenorrhea can \nimpact the quality of life (QOL) in adolescents (Azurah et al., 2013; Yang and To, 2006) , affect their \nfemininity, and cause worry over the prospect of infertility (Jones et al., 2011). \nMenorrhagia, or heavy menstrual bleeding (HMB) has been reported at a prevalence of between 17% \n(Chan et al., 2009) and 37% (Friberg et al., 2006; Revel-Vilk et al., 2012) in adolescents. HMB is defined \nas menstrual blood loss of mo re than 80ml per cycle  (Hallberg et al., 1966), however young women \nfind their blood loss difficult to quantify, and may refer to pads/tampons used within 24 hours (Wood \net al., 2007). Using a pictorial blood assessment chart (PBAS) Revel-Vilk et al. (2012), found that 36% \nof their adolescent sample met criteria for HMB, although only 15% thought that they had it. HMB can \n\n29 \n \nbe a reason for school absence during menses (Parker, 2006), and reduced participation in sporting, \nsocial, or other daily activities (Li et al., 2020). Adolescents with HMB report anxiety in managing their \nbleeding, particularly at school, and may spend significant time in the bathroom (Li et al., 2020). The \nnecessity to change menstrual products in the night may also cause sleep disturbance (Ib id).  HMB \nduring adolescence is also associated with anaemia (Revel-Vilk et al., 2012). \nDysmenorrhea, or pain during periods, occurs commonly during adolescence. It is defined as primary \ndysmenorrhea if pelvic anatomy and ovulatory function are normal, and as secondary if pelvic or \nhormonal pathology is identified (Slap, 2003) . Primary dysmenorrhea can usually be effectively \ntreated using either non-steroidal anti-inflammatory drugs (i.e. ibuprofen, naproxen, Mefenamic acid) \nor oral contraceptives, however secondary dysm enorrhea may be less responsive to these (Slap, \n2003).  A high percentage of adolescents report pain during their periods, ranging from 68% in Italy \n(Zannoni et al., 2014) , to 73% in Brazil (Pitangui et al., 2013) , to 83.2% in Singapore (Agarwal and \nVenkat, 2009), and up to 93% in Australia (Armour et al., 2020a; Parker et al., 2010). Wide variation in \ndysmenorrhea rates among adolescents is likely due to different measures fo r dysmenorrhea and a \nfailure to distinguish between if primary or secondary dysmenorrhea is measured (De Sanctis et al., \n2016). Two recent international meta-analyses found the prevalence of dysmenorrhea in 13 -23 year \nolds was 71.1% (Armour et al., 2019b) and 78.5% (Armour et al., 2019a). There were no studies found \non prevalence rates in the UK for inclusion in either meta-analysis. \nStudies reporting on these rates of dysmenorrhea often include data on the severity of pain, and how \nthis influences life activities. The proportion of adolescents reporting severe pain varies considerably \nbetween studies, for example 11.6% (Agarwal and Venkat, 2009), 20.9% (Parker et al., 2010), and 56% \n(Rigon et al., 2012), and is likely due to different measur es for assessing pain severity. Nevertheless, \nsevere menstrual pain has been associated with increased school absenteeism (Agarwal and Venkat, \n2009; Armour et al., 2020a; Parker et al., 2010; Pitangui et al., 2013) , greater interference with daily \nactivities (Parker et al., 2010; Pitangui et al., 2013) , incre ased likelihood of seeking medical care \n(Pitangui et al., 2013), and greater use of analgesics (Agarwal and Venkat, 2009). \nRegardless of severity of pain, dysmenorrhea has been consistently cited to affect school attendance \nfor adolescents, and affects school activities, sporting activities, and social participation (Armour et \nal., 2020a; Armour et al., 2019b; Hillen et al., 1999; Parker et al., 2010). Dysmenorrhea can also impact \nthe quality of life of adolescents (Azurah et al., 2013; Wong, 2018; Yang and To, 2006). These findings \nhave also been reiterated in qualitative research, although such research addressing the experiences \nof adolescents with dysmenorrhea is lacking (Chen et al., 2018; Li et al., 2020). In addition to impacts \non school, social and sporting activities (Allyn et al., 2020; Li et al., 2020) , qualitative research has \n\n30 \n \nindicated that women and adolescents view their pain as a normal part of being a woman (Chen et al., \n2018; Wong et al., 2014), and that healthcare providers, society and employers showed little sympathy \nand did not consider dysmenorrhea a legitimate health issue (Chen et al., 2018; Li et al., 2020).  \nIt may therefore be unsurprising that despite the high prevalence of problematic menstruation, few \nadolescents seek medical help for their symptoms. Pitangui et al. (2013)  found that 73% of their \nBrazilian sample of adolescent girls reported dysmenorrhea, but only 13% sought medical help. \nSimilarly, Wong (2011) found dysmenorrhea reported by 76% of Malaysian adolescent girls, and only \n14.8% had sought medical help. This may be in part due to adolescents’ assumptions of what \nconstitutes ‘normal’ menstruation; if they believe that period pain is ‘normal’, they may be unlikely to \nseek help for it. Armour et al. (2021a)  surveyed 13–25-year-olds and found that 92% experienced \nmoderate or greater levels of period pain, causing significant life disruption, yet more than half \nthought their period was ‘normal’.  \nGiven the variations in the timing of menarche, the time taken to establish a regular bleeding pattern, \nand menstrual pain levels, it is difficult for anyone to ascertain what ‘normal menstruation’ is during \nadolescence, let alone for adolescents themselves. Wood et al. (2007) suggest that adolescents may \npiece together an idea of what they think is ‘normal’, based on their own experience , that of their \nfriends, and the education they receive about menstruation, which as discussed previously, can be \nlacking. Given that periods are novel to them, then a dolescents do not have a personal frame of \nreference upon which to assess their symptoms (Slap, 2003), and so even pain that is considered to \nbe ‘abnormal’ in comparison to others’ pain,  may still be considered ‘normal’ for themselves, \nparticularly if it is all they have ever known (Wood et al., 2007). Pain or other bothersome symptoms \nmay then become normalised over time (Armour et al., 2021a). Wood et al. (2007) found that only if \nperiod symptoms were extreme, or were unpredictable and inconsistent, did young women perceive \nthem to be ‘abnormal’. Armour et al. (2021a) found that as pain became more severe, young women \nwere less likely to consider them ‘normal’, however it did not translate into help seeking behaviours.  \nTherefore, even if problematic menstruation is recognised, it may not always be acted on. This may \nbe in part due to widely held beliefs that menstrual symptoms are an integral part of female life, and \nare therefore something to be endured, even if they are severe (Armour et al., 2021a; Markovic et al., \n2008; Wong, 2011). Adolescents may also attempt to self-manage their symptoms before seeking help \n(Li et al., 2020) , however, they have consistently been found to take a sub -therapeutic dose of over \nthe counter medications (Armour et al., 2021a; Armour et al., 2019a; O'Connell et al., 2006) , and so \nthis may not always alleviate symptoms.  \n\n31 \n \nAnother potential factor in delayed help seeking may be that when adolescents do seek help, their \npain is often normalised (Li et al., 2020), which may deter or disillusion them (Armour et al., 2021a). \nFurther medical investigation occurs infrequently, as highlighted by Parker et al. (2010) in their study \nof 1051 Australian adolescent girls. They found that 35% of the sample reported problems with their \nperiods, 25% displayed symptoms suggestive of marked menstrual disturbance (including moderate \nto severe pain, school absence, and high interference with life activities), and 33% had seen a GP \nregarding menstruation. However, only 9% had been referred to a specialist for further investigation, \nand less than 1% (10 girls) had received a clinical diagnos is (i.e. endometriosis or PCOS). This may \nreflect a reluctance of health professionals to refer or operate on adolescents due to their age, and \nperhaps a lack of acknowledgement that serious pathology can occur in adolescents (Parker et al., \n2010). In addition, adolescents may experience difficulties providing a menstrual history to physicians \nas they do not have a frame of reference against which to assess their symptoms (Slap, 2003). \nTherefore, if adolescents do seek help for menstrual symptoms, there may be obstacles on both sides \nof the encounter. \nThis section has highlighted the wide variation of menstrual experiences in adolescents, and the issues \nassociated with menstruation they may encounter. Dysmenorrhea occurs most commonly, with many \nadolescents experiencing moderate to severe levels of ‘period pain’. Comparatively few adolescents \nseek medical help for their symptoms, but if they do, then investigation for causes of  secondary \ndysmenorrhea, such as endometriosis is rare (Parker et al., 2010) . Despite the prevalence of \nendometriosis (see Section 2.2.2), and the widespread disruption to adolescent life that is caused by \nsymptoms suggestive of endometriosis (i.e. dysmenorrhea, HMB), there is a lack of research into the \nexperience of endometriosis in adolescents (Culley et al., 2013; Young et al., 2015) . Chapter 3 of this \nthesis is a systematic narrative review of what is currently known about how endometriosis is \nexperienced by  adolescents. However, m ore research has been conducted on the experience of \nwomen with endometriosis, which is discussed in the following section. \n \n2.7 Women’s Experiences of Endometriosis \nThe impact of endometriosis on women’s lives has received modest research attention, studied both \nqualitatively and quantitatively. Qualitative research often uses interviews or focus groups to explore \nthe experience of living with endometriosis, or a particular aspect of it. Quantitative research has \nassessed the health -related quality of life (HR QoL) of those with endometriosis, their mental \nwellbeing, and the impact on work productivity, among other factors. By summarising the qualitative \nand quantitative research together, it enables an understanding of the prevalence of the issues \n\n32 \n \nwomen experience (quantitative), and an exploration of why these occur (qualitative) (Broom and \nWillis, 2007). This topic has been reviewed more extensively elsewhere (Culley et al., 2013; Young et \nal., 2015), and therefore only an overview of key findings is provided herein.  \n \n2.7.1 Symptoms \nWomen with endometriosis (WWE) experience a diverse range of symptoms, but most commonly \npelvic pain (dysmenorrhea and CPP), dyspareunia (pain associated with sexual intercourse), and \ninfertility (Acién and Velasco, 2013). Pain can also occur in the bowel, bladder, kidneys, legs, and back. \nWWE have described their pain in qualitative research, often describing it as different to ‘normal’ \nperiod pain, and using terms su ch as severe, horrendous, crippling, nauseating, debilitating, and \nparalysing (Denny, 2004a; Grogan et al., 2018; Huntington and Gilmour, 2005; Moradi et al., 2014) . \nMetaphors or similes are often us ed to describe pain (Bullo, 2019), with notions of being stabbed, \nknifed, or torn, being common (Denny, 2004a; Drabble et al., 2021; Moradi et al., 2014). Women have \ndescribed this pain occurring around menstruation, ovulation, and sometimes constantly (Denny, \n2004a; Huntington and Gilmour, 2005; Manderson et al., 2008). Women have also reported that their \npain has progressed in intensity/duration over time (Drabble et al., 2021; Huntington and Gilmour, \n2005).  \nAnother symptom frequently reported by WWE is dyspareunia, and is described as sharp, deep, \ndragging, and agonising (Denny, 2004a; Drabble et al., 2021; Huntington and Gilmour, 2005; Seear, \n2009a). This can occur during sexual intercourse but can continue for hours or days after. Large cross-\ncountry studies have found the incidence of dyspareunia to be between 25% (Bernuit et al., 2011) and \n47% (De Graaff et al., 2013), but in smaller studies it has been found in as many as 80% of participants \n(Denny, 2004a). Some women have stated they have not repo rted this symptom to doctors due to \nembarrassment (Denny, 2004a; Griffith, 2017) . Ano ther common symptom of endometriosis is \ninfertility. Women have reported feeling worried or even depressed about the prospect of infertility \nor a diagnosis of such, stating it affects their perceived femininity (Jones et al., 2004c). \n \n2.7.2 Delay in the Diagnosis of Endometriosis \nThe often-considerable time taken to receive a diagnosis of endometriosis has gained much attention \nand is a prominent feature of women’s experience of endometriosis (Culley et al., 2013; Young et al., \n2015).  Current estimates suggest the diagnostic delay is 7.5 to 8 years in the UK (Endometriosis UK, \n\n33 \n \n2011; Ghai et al., 2020) . This delay occurs at two levels; the ‘patient level’, between symptom onset \nand seeking medical help, and; the ‘medical level’, between seeking medical help and receiving a \ndiagnosis (Ballard et al., 2006) . In a large inte rnational sample, De Graaff et al. (2013)  found the \naverage patient level delay was 2.1 years, and the average medical leve l delay was 4.6 years. In a \nrecent UK report, the median delays were 1 year at the patient level, and 3 years at the medical level, \nhowever this was based on a small sample, all recruited from one tertiary care centre (Ghai et al., \n2020).  \nSeveral factors are involved at the patient level. Women have described being unable to di stinguish \nbetween normal and abnormal menstrual symptoms, and even if pain was extreme and disruptive, \nthey often just thought of themselves as being unlucky (Ballard et al., 2006; Denny, 2004b; Moradi et \nal., 2014). Some WWE have said this was in part because they lacked understanding or awareness of \nendometriosis (Moradi et al., 2014), and when symptoms are disclosed to others (i.e. friends, family, \ndoctors), they also lack awareness, and therefore often dismiss them as normal menstruation (Denny, \n2004b). Embarrassment also prevents women from discussing their symptoms, and they th erefore \nmiss the opportunity to compare them with others (Ballard et al., 2006) . Denny (2004b) and Seear \n(2009a) discuss the ‘etiquette of menstruation’ (Laws, 1991), whereby menstruation is considered to \nbe something that is kept hidden, and not mentioned in  front of others, particularly males. Mothers \nand friends may actively encourage this concealment (Seear, 2009a). Feeling unable to discuss or \ndisclose to others, or believing their symptoms are ‘normal,  some woman have attempted to tolerate \nthem for many years before seeking help (Markovic et al., 2008) , and some have only sought help \nwhen experiencing fertility issues (Manderson et al., 2008). \nMedical level delays are also multifaceted. Often, these occur in primary care, and women have often \nreported making multiple visits to their doctor before being referred to secondary care, during which \ntheir symptoms were dismissed, normalised, or undermined (Ballard et al., 2006; Denny, 2004b; \nGrogan et al., 2018; Jones et al., 2004c) . Denny and Weckesser (2019) describe the gendered notion \nof pain; perceptions that women are more likely to report and experience pain, and it is therefore \nviewed as ‘normal’ for them, and as such, not treated appropriately. Additional delays occur when \nwomen undergo a period of ‘hormonal suppression’, whereby doctors attempt to treat the symptoms \nbefore referring them for further investigation (Ballard et al., 2006; Denny, 2009). Misdiagnoses and \ninappropriate secondary care referrals are also common (Denny and Mann, 2008; Moradi et al., 2014).  \nWithout a diagnosis, women have described finding it difficult to explain to others what was wrong, \nwhich could create problems in work and social settings (Ballard et al., 2006; Huntington and Gilmour, \n2005). The receipt of diagnosis is often described as a relief, it legitimises pain, and provides a label \n\n34 \n \nwith which women can discuss their experiences (Ballard et al., 2006; Cox et al., 2003c; Facchin et al., \n2018; Fernley, 2021). It also provides  reassurance, that symptoms are not “in the head” (Cox et al., \n2003c; Huntington and Gilmour, 2005; Moradi et al., 2014) , and that it was not something more \nserious (Ballard et al., 2006; Huntington and Gilmour, 2005; Moradi et al., 2014). The diagnosis could \nbe viewed as empowering, allowing women to seek appropriate support (i.e. ‘endo warriors’), and to \nhelp advocate for those yet to receive their diagnosis (Fernley, 2021). Diagnosis can also bring about \nnegative feelings including anger and frustration, particularly at not being listened to or believed for \nso long (Denny and Mann, 2008; Moradi et al., 2014). There is also the realisation that endometriosis \nhas no cure, and thus must be managed indefinitely (Denny, 2009; Moradi et al., 2014). In those who \nare asymptomatic (i.e. presented for infertility), a diagnosis can be quite confronting (Cox et al., \n2003c). \n \n2.7.3 Medical Experience \nWWE have discussed pos itive and negative encounters with medical professionals, but negative \nencounters are more predominant. They have frequently reported being dismissed by General \nPractitioners (GPs), who have normalised symptoms or failed to take them seriously , thus delayi ng \nreferral to secondary care. Women have recounted being told medical myths, such as endometriosis \ndoes not affect teenagers (Denny and Mann, 2008), and that having a baby would cure their symptoms \n(Denny and Mann, 2008; Facchin et al., 2018; Huntington and Gilmour, 2005; Moradi et al., 2014) . \nSome believe that medical professionals lack knowledge of endometriosis (Denny and Mann, 2008; \nGilmour et al., 2008; Jones e t al., 2004c), or do not provide enough information about it (Cox et al., \n2003a). In addition to contributing to diagnostic delays, these negative encounters cause women to \nquestion the validity of their own symptoms (Ballard et al., 2006) , leave them feeling helpless, and \ninstil a pressure to have children before being ready (Facchin et al., 2018). Positive experiences were \ndescribed by women who felt they were given enough information, were listened to, and were \npromptly referred for investigation (Denny and Mann, 2008; Facchin et al., 2018).  \nIn addition to medical encounters, women often report their experiences of treatments for \nendometriosis. The use of hormonal treatments is common; De Graaff et al. (2013) found that 79% of \ntheir international sample had used at least one form of hormonal treatment. These treatments have \noften been described as ineffective (Moradi et al., 2014) , or providing only temporary relief of \nsymptoms, which reoccurred once discontinued (Denny, 2009; Huntington and Gilmour, 2005) . In \naddition, side effects are often reported, such as breakthrough bleeding, moodiness, weight gain, and \nmenopausal changes, which can themselves be the cause of discontinuation (Denny, 2009; Moradi et \n\n35 \n \nal., 2014). Some women have expressed concern over the l ong-term effects of medical treatments, \nand particularly about becoming tolerant to painkillers (Denny, 2009) . Women  have typically \ndescribed more symptom relief from surgery, such as laparoscopy, however this is seldom long -\nlasting, as symptoms tend to return (Denny, 2004a; 2009; Huntington and Gilmour, 2005; Moradi et \nal., 2014). Experience of multiple surgeries is therefore common (De Graaff et al., 2013). The ongoing \ntreatment cycle causes despair (Huntington and Gilmour, 2005) , and some therefore contemplate \nmore drastic surgery such as a hysterectomy (Huntington and Gilmour, 2005; Moradi et al., 2014) . \nWomen may also look for alternate ways to cope with their s ymptoms, such as diet and exercise \n(Roomaney and Kagee, 2016). \n \n2.7.4 Life Interference \nResearch studies assessing QoL in WWE have used generic measures a nd disease specific measures \nincluding the Endometriosis Health Profile 30 (EHP30; Jones et al., 2004b; Jones et al., 2006; Jones et \nal., 2001) , EHP5 (Jones et al., 2004a) , and the Stellenbo sch Endometriosis QoL measure (SEQOL: \nRoomaney and Kagee, 2018a). Findings suggest reduced QoL among WWE (see e.g. De Graaff et al., \n2013; Facchin et al., 2015; Fourquet et al., 2011) . Pain appears to be a significant feature in reduced \nQoL, as studies have reported a correlation between increasing pain and reduced QoL (Nnoaham et \nal., 2011; Sepulcri and do Amaral, 2009).  \nThe symptoms of endometriosis interfere with many aspects of women’s lives. They are reported to \ndisrupt education, impacting school attendance, productivity, grades, educational attainment, and \ncourse completion  (Gilmour et al., 2008; Manderson et al., 2008; Moradi et al., 2014) . Similar \ndisruptions have been noted in the workplace, effecting both productivity and attendance. Evidence \nsuggests that WWE lose between 7.41 hours (Fourquet et al., 2011) and 10.8 hours (Nnoaham et al., \n2011) of work time per week when symptoms are at their worst. Nnoaham et al. (2011)  found this \nwas mainly due to reduced productivity, suggesting that women are more likely to go into work than \nbe absen t, perhaps due to hesitance in disclosing their condition. This is evidenced in qualitative \nresearch, in which women have described difficulties explaining work absences to co -workers, \nparticularly males (Facchin et al., 2018; Gilmour et al., 2008; Jones et al., 2004c), and are worried about \nbeing perceived as malingerers, with no observable signs of illness (Gilmour et al., 2008). Women have \noften reported needing to work part -time or flexible hours due to their symptoms (De Graaff et al., \n2013; Gilmour et al., 2008; Grogan et al., 2018), which could hinder employment opportunities, career \nprogression, and household income (Huntington and Gilmour, 2005; Moradi et al., 2014).  \n\n36 \n \nEvidence suggests a reduction in attendance at social events due to endometriosis, and WWE have \nconsequently experienced diminished social relationships and isolation (Denny, 2009; Gilmour et al., \n2008; Jones et al., 2004c;  Moradi et al., 2014) . Participation in sport or leisure activities is also \nreportedly reduced, often due to pain, heavy bleeding, and fatigue (Facchin et al., 2018; Grogan et al., \n2018; Moradi et al., 2014), and sometimes bowel/bladder symptoms, which have necessitated quick \naccess to a toilet (Gilmour et al., 2008).  \nIn addition to social relationships, endometriosis can have a marked impact on intimate relationships. \nDe Graaff et al. (2013)  found that 50% of their sample reported endometriosis had affected these \nrelationships, and 10% considered it the reason for the ir divorce. Qualitative research corroborates \nthis, in which the stresses and strains of living with endometriosis are described to cause relationship \ndifficulties and breakdowns (Denny, 2004a; Facchin et al., 2018; Huntington and Gilmour, 2005) . \nDyspareunia significantly interferes with intimate relationships, with women reporting limiting or \navoiding sexual activity (De Graaff et al., 2013; Jones et al., 2004c; Moradi et al., 2014), and subsequent \nfeelings of guilt (Denny and Mann, 2007; Facchin et al., 2018) . Infertility can also put a strain on \nrelationships for WWE (Facchin et al., 2018; Jones et al., 200 4c; Moradi et al., 2014; Roomaney and \nKagee, 2018b). However, despite such strains, partners have also been identified as an important and \nsignificant source of support (Denny, 2004a; Facchin et al., 2018). \nThe interference of endometriosis is further compounded by the unpredictability of symptoms. While \nsome women only experience symptoms at the time of menses, studies have found that between 60% \n(De Graaff et al., 2013)  and 77% (DiVasta et al., 2018)  also experience acyclic pelvic pain. This \nunpredictability has been reported to make it hard for women to make plans, including social events \nand holidays, and they have therefore d escribed feeling like life is on hold, or is controlled by \nendometriosis (Denny, 2009; Jones et al., 2004c; Moradi et al., 2014).  \nUncertainty also extends into the future, and women have indicated concern that symptoms will \nreturn, or worsen, and are unaware of their long -term prognosis (Denny, 2004a; 2009; Jones et al., \n2004c; Moradi et al., 2014) . Other concerns include possible interference with work, education, and \nintimate relationships (Moradi et al., 2014) , and fears about passing the condition on to daughters \n(Jones et al., 2004c; Moradi et al., 2014) . One of the main concerns, however, relates to fertility; \nwomen have expressed worry about both their ability to have children (Denny, 2009; Facchin et al., \n2018; Jones et al., 2004c), and the financial costs involved if they need fertility treatment (Moradi et \nal., 2014). The prospect of infertility can impact HRQOL, and challenge one’s notions of womanhood \n(Roomaney and Kagee, 2018b). While many express a pessimistic future outlook, some women have \nshown hope towards their future, particularly if they were pain free when interviewed (Denny, 2004a; \n\n37 \n \n2009). One study also indicated that younger women were more likely to express hope about their \nfuture, perhaps because they had not had as many relapses and false hopes as older women (Denny, \n2009).  \n \n2.7.5 Psychological and Emotional Impact \nEndometriosis has been associated with emotional and psychological impacts including depression, \nanxiety, low self-esteem, low self-confidence, lack of control (powerlessness: Jones et al., 2001), and \ndissatisfaction with appearance. Quantitative research has reported moderate (Fourquet et al., 2011; \nLow et al., 1993; Roomaney et al., 2020) to high (Sepulcri and do Amaral, 2009)  rates of depression, \nwith discrepancies potentially due to sampling differences, as low socioeconomic status may have \ncontributed to observed high levels (Sepulcri and do Amaral, 2009). Anxiety has also been found to be \nelevated in WWE (Low et al., 1993; Sepulcri and do Amaral, 2009), as has emotional distress (Fourquet \net al., 2011). Increased anxiety, depression, and emotional distress in WWE appears to be particularly \nprevalent in women with increased pain levels (Facchin et al., 2015; Sepulcri and do Amaral, 2009) . \nLorencatto et al. (2006) compared depression rates in WWE between those with pelvic pain and those \nwithout, and observed rates of 86% and 38% respectively.  Roomaney et al. (2020)  examined \npredictors of depression in WWE and identified that physical functioning, feelings about the medical \nprofession, and sexual relationships, were all significant predictors. \nQualitative research further explores the issues that affect women emotionally. Some research has \nindicated that endometriosis interferes with a woman’s female identity. For example, Moradi et al. \n(2014) found that an inability to have sex, not being the mother they wanted to be able to be, and \nbeing infertile, were all factors that could impact women’s identity. Infertility has been described to \nparticularly affect one’s female identity, as well as having other emotional impacts including distress, \nanxiety, and lowered self-esteem (Cox et al., 2003a; Facchin et al., 2018; Jones et al., 2004c; Roomaney \nand Kagee, 2018b) . Women have also reported negative impacts on their physical appearance, \nincluding spots, bloating, weight gain and surgical scars (Jones et al., 2004c; Moradi et al., 2014) which \ncan affect self-confidence. \nThe long delay in receiving a diagnosis has also been reported to cause emotional impact. Being \ndismissed or disbelieved by healthcare professionals impacted self-esteem (Cox et al., 2003a), and had \nwomen questioning whether they were goi ng insane (Facchin et al., 2018). The failure of healthcare \nprofessionals to legitimise symptoms has also intensified feelings of loneliness (Cox et al., 2003a) . \nLoneliness was described to be further compounded by a lack of support and unders tanding from \n\n38 \n \nthose in many settings including work, healthcare, family, intimate partners, and friends (Cox et al., \n2003a; Facchin et al., 2018; Jones et al., 2004c) . While WWE have sometimes describ ed to feel \n‘miserable’, ‘upset’ or ‘moody’, some have indicated significant impairment, including severe \ndepression, panic attacks (Facchin et al., 2018), and even thoughts of suicide (Cox et al., 2003a). \n \n2.8 Chapter Summary \nThis chapter has prov ided an overview of topics relevant to this area of study. While there is little \nknown about adolescents’ experiences of endometriosis, there has been some research addressing \nhow other chronic illnesses can affect adolescents , which  has highlighted the ir significant impact , \nparticularly on key developmental tasks such as developing autonomy and maintaining relationships. \nWhile such research is useful, it makes little reference to the influence of gender on the experience of \nchronic illness in adolescence, and there is a dearth of research exploring conditions which only affect \nfemales. Research exploring the experience of menstruation during adolescence provides insight, as \nendometriosis is closely linked to menstruation. This highlights the secretive nature of menstruation, \nand the embarrassment that adolescents may feel in discussing menstruation. Those that experience \nproblematic menstruation may not seek help for their symptoms, despite the significant disruption \nthey cause to their lives. These issues h ave also been documented in research exploring the \nexperiences of women with endometriosis. Such research has provided a good understanding of how \nendometriosis affects women, particularly in terms of the interruption to their lives and the emotional \nimpact of endometriosis. However, the experiences of adolescents may differ, as they are also \nnegotiating the rapid physical, social and emotional development associated with adolescence. The \nnext chapter of this thesis will use a narrative review method to synthesise and summarise the current \nresearch pertaining to adolescents’ experiences of endometriosis. This will provide an understanding \nof what is currently known and will highlight areas for further exploration within this thesis. \n \n  \n\n39 \n \nChapter 3. The Experience and Psy chosocial Impact of Endometriosis \nin Adolescents: A Systematic Narrative Review \n3.1 Introduction \nResearch into adolescent endometriosis has had a largely medical focus, with much attention paid to \nits clinical presentation and response to treatment (Saridogan, 2017); however very little research has \nspecifically addressed the illness experience  of endometriosis in this demographic. As highlighted in \nSection 2.7, research exploring women’s experience of endometriosis has indicated that it impacts \nsignificantly on their lives. However, those reviewing this evidence base have emphasized the lack of \ninclusion of adolescents in such research (Culley et al., 2013; Young et al., 2015), which is imperative \ngiven that adolescence is a crucial stage for identity development.  \nResearch with WWE has not specifically included adolescent perspectives; however, participants have \noften recalled the issues they faced as a teenager . These include missing school due to symptoms \n(Manderson et al., 2008; Markovic et al., 2008), being dismissed by healthcare providers, or being told \nthey were too young to have endometriosis (Cox et al., 2003a; Denny, 2004b; Denny and Mann, 2008; \nMarkovic et al., 2008), and a lack of information and education provision during adolescence (Cox et \nal., 2003c; Markovic et al., 2008) . While providing some insight into adolescents’ experiences , these \naccounts rely on retrospective recall, and therefore may not capture aspects of the experience which \nmight be particularly salient during adolescence.  \nA recent review on the psychosocial impact of endometriosis during adolescence (Fedele, 2021)  \nhighlighted the substantial effect o f endometriosis on the QoL of adolescents; they struggle with \nsignificant pain, impaired physical and social functioning, and impacts on their overall well -being. \nAlthough providing some contribution, the review was not conducted systematically, and there were \nno details on the screening process, eligibility criteria (including age range of adolescents), or \nparticipant characteristics of the included studies. Furthermore, only 5 studies were included, they \nwere mainly quantitative studies, and one did not i nclude participants with endometriosis. While \nquantitative research does give an indication of the prevalence of certain issues, it cannot provide \ndetail on why such issues may occur (Broom and Willis, 2007). Qualitative research enables a thorough \nand complex understanding of an issue, and how people make sense of their experiences (Bryman, \n2016). Synthesising both the qualitative and quantitative research together will provide a more \nthorough un derstanding of the issues faced by adolescents with endometriosis, and  will highlight \nareas which need further exploration. \n\n40 \n \nTherefore, to  guide further research into adolescents’ experiences of endometriosis, a systematic \nnarrative review was undertaken. T he aim of the r eview was to identify and synthesise the existing \nbody of research on the experience and psychosocial impact of endometriosis in adolescents.  \n \n3.2 Methods \nIn order to meet the review aim, a critical narrative synthesis method was used (Popay et al., 2006). \nSuch a method allows for the inclusion of diverse methods and research questions, and therefore \nenables the synthesis of both qualitative and quantitative research (Culley et al., 2013) . Where \napplicable, the PRISMA principles were also adhered to (Moher et al., 2009).   \n \n3.2.1 Search Strategy \nSystematic literature searches were conducted in June 2018, and updated in November 2021, on eight \nhealth, medical, and social science databases. In addition, a manual search was conducted on one \nrelevant key journal . The databases searched and the search terms used can be seen in Table 3.1. \nSearch terms were derived by reviewing the abstracts and keywords of papers written about women’s \nexperiences of endometriosis, as well as the search terms used in similar literature reviews. The final \nterms used were agreed  by the candidate and all members of the supervisory team. The limiters \n“English Language” and “Humans” were set on the searches.  \n \nTable 3.1: Research Databases and Search Terms  \nDatabase/Journal Search Terms \nCINAHL \nMedline \nWeb of Science \nPubmed \nEndometriosis AND (adolescen* OR teenager* OR \"young wom?n\" OR \"young \nadults\" OR girl*) AND (Qualitative OR “quality of life” OR “lived experience” OR \ninterview OR \"focus group\" OR \"case study\" OR \"well-being\" OR experience* OR \nsocial OR socio* OR psycho* OR depression OR anxiety OR distress OR emotion* \nOR questionnaire OR survey) \nPsycINFO \nPsycARTICLES \nASSIA \nSAGE \nEndometriosis AND (adolescen* OR “young wom?n” OR “young adults” OR girl*) \nJournal of Paediatric and \nAdolescent Gynaecology \nEndometriosis (in title or abstract) \n \nFinally, a Google Scholar alert was set up to identify any relevant/new articles occurring after the \nsearch (up to November 2022), and the Cochrane Library was searched for relevant reviews. \n\n41 \n \n3.2.2 Inclusion and Exclusion Criteria \nThis review aimed to include the fullest range of methodologies, thus quantitative, qualitative , and \nmixed method studies were included.  To ensure a broad overvie w of currently available literatures, \narticles were included regardless of if endometriosis was a major or minor theme of the article. There \nwere no restrictions based on the publication date of the articles. \nStudies were included if they reported on  the e xperience of living with endometriosis as an \nadolescent. Papers reporting on broader topics (i.e. experience/efficacy of endometriosis treatment), \nwere only included if they additionally reported the social and psychological impact of endometriosis \nin adol escents, including having  used Quality of Life ( QoL) measures . Papers which investigated \n‘medical’ aspects of endometriosis in  adolescents, such as prevalence and clinical features , were \nexcluded, as well as reviews, abstracts, commentaries, and opinion pi eces. Only papers reporting on \nthose with surgically confirmed endometriosis were included, as this is accepted as the gold standard \nfor a diagnosis of endometriosis (Kennedy et al., 2005). \nFor this review, the age range for adolescence was defined as 10 to 24 years. This age range \ncorresponds to contemporary notions of adolescence, and incorporates the time period from puberty \nto the transition into adult social roles (Hagell et al., 2013; Sawyer et al., 2018) . Thus, studies wer e \nincluded in the review if the sample primarily encompassed this age range, if the mean of the sample \nfell within this age range, or if the sample was identified as ‘adolescents’ or ‘teenagers’ with no further \nspecificity. Studies which include d adolescents and adults were  only included in the review if they \npresented the results for the adolescent sample separately.  Studies that retrospectively asked adult \nwomen about their experiences during adolescence were not included.  Finally, articles were only \nincluded if they were peer reviewed and were reported in English language.  \n \n3.2.3 Screening for Studies \nThe screening process is summarised in Figure 3.1 . The search results were imported into EndNote, \nwhich enabled identification and deletion of duplicates. The titles and abstracts of the remaining \npapers were screened for suitability by the candidate (AR) and a supervisor (AH) independently, and \nthose not immediately meeting the inclusion criteria were excluded. Full text articles for the remaining \npapers were retrieved and scrutinised  according to the inclusion criteria , again  by AR and AH \nindependently, and those deemed ineligible were excluded. Finally, the references of all eligible \npapers were searched to identify any additional suitable papers,  but none were found . Any \ndiscrepancies regarding the inclusion of papers were resolved through discussion between reviewers. \n\n42 \n \n \n \n3.2.4 Quality Appraisal \nThe Mixed Methods Appraisal Tool (MMAT: Hong et al., 2018)  was used to assess the quality of the \narticles included in the review. This critical appraisal tool can be used to evaluate the quality of studies \nin the following categories: qualitative research, randomized controlled trials, non -randomized \nstudies, quantitative descriptive studies, and mixed -methods studies. A quality criteria checklist is \nprovided for each category. All papers were appraised by two researchers independently (AR all \npapers, AW qualitative papers, GJ/AH quantitative and  mixed-methods papers). Any discrepancies \nwere resolved by bringing in a third appraiser.  \n \n1923 citations identified by literature search \nMEDLINE = 530 \nCINHAL = 164 \nPsycArticles & PsycInfo = 95 \nPubMed = 562 \nSAGE = 129 \nWeb of Science = 240 \nASSIA = 74 \nJournal of Paediatric and Adolescent Gynaecology = 129 \nTiles & Abstracts Screened (n=1086) \nFull text reviewed (n=153) \nDuplicates removed (n=837) \nExcluded records (n=933) \nArticles eligible for inclusion (n=21) \nExcluded records (n=132): \nDoes not meet age requirements (n=107) \nOpinion piece/abstract/review (n=11) \nFails to address review research question \n(n=9) \nNot enough information available to \ndetermine inclusion (n=5) \nReferences of eligible articles searched \n(n=0) \n21 articles included in the final review \nUSA = 14 \nAustralia = 3 \nSweden = 1 \nSingapore = 1 \nNew Zealand = 1 \nPuerto Rico = 1 \nFigure 3.1: Literature Search and Screening Process \n \n\n43 \n \n3.2.5 Data Extraction \nA data extraction form was developed and completed for each paper that met inclusion criteria (See \nAppendix 1). These recorded details including the authors names, research setting, aims, design, \nsample characteristics, analysis, key findings, key themes, and limitations. \n \n3.2.6 Analysis  \nTo synthesize the findings from the papers, analysis of the extracted data was conducted according to \nstandard principles of systematic thematic analysis (Braun and Clarke, 2006; 2013). The PhD candidate \nand one supervisor (AH) independently coded the extracted data and developed a preliminary list of \ndescriptive themes, which identif ied the main, or recurrent themes/ideas across the papers. These \nlists were discussed and refined between the candidate and two supervisors (AH & AW) and the final \nfive substantial themes were agreed upon. The extracted data was then reorganised according to \nthese themes. \n \n3.3 Results \nThe search strategy resulted in 21 papers eligible for inclusion in the review (see Table 3.2); these 21 \npapers reported on 19 studies, as tw o published multiple data . All papers were published between \n2004 and 2021, and all but one were conducted in high -income countries, with most papers coming \nfrom the United States of America (USA). There were no studies conducted within the UK. There were \n4 qualitative studies, 14 quantitative studies, and 3 mixed -methods studies. Qualitative studies used \nmainly semi-structured interviews and quantitative studies used a variety of Health -Related Quality \nof Life (HRQoL) instruments, psychological assessments, and symptom inventories.  \nSample sizes varied from 2 to 16 participants with endometriosis in the qualitative studies, and from \n18 to 360 in the quantitative studies (where data is complete). While most papers referred to their \nsample as ‘adolescents’, there was considerable variability in the age ranges c hosen including those \naged 10-24 years, 15-21 years, and <20 years, to highlight a few . All papers reported on participants \nwith surgically diagnosed endometriosis, and most participants were recruited t hrough specialist \nclinics or support organisations. In addition to age, 12 studies reported on participants’ ethnicity, but \nlittle other demographic information was provided. \nThe MMAT was used to appraise the quality of the included articles (See Appendix 2). The qualitative, \nnon-randomised, and quantitative descriptive studies were largely of good quality, supplying much of \n\n44 \n \nthe information needed to make an accurate judgement  (scoring 5-7 out of 7) .  However, the RCTs \nand mixed methods studies were deficient in some areas in addressing the quality criteria (scoring 3-\n5 out of 7) . Hong et al. (2018)  advise against using studies with low overall methodological quality; \nhowever, given the paucity of research on this topic, it was deemed appropriate to use all the existing \nstudies meeting the inclusion/exclusion criteria, taking into account the lack of information regarding \nmethodological quality in some of the papers. \n \n \n \n\n45 \n \nTable 3.2: Paper Characteristics \nType of \nstudy \nAuthor (year of \npublication), \nCountry  \nSample Size Sample age range \n(years) \nAim Data collection method Reference \nType \nQualitative Conboy et al. \n(2008) \nUSA \n7 14-22 To explore the experiences of acupuncture for the \ntreatment of chronic pelvic pain (CPP) in \nadolescents with endometriosis. \nSemi-structured interviews Journal Article \n Highfield et al. \n(2006) \nUSA \n2 Not stated \n(described as \n‘adolescents’) \nTo describe the impact of a course of acupuncture \non two adolescents with endometriosis related \nchronic pelvic pain \nCase reports Journal Article \n Moradi et al. \n(2014) \nAustralia \n13  \nin the ‘teenagers’ \nage group (35 \ntotal) \n16-24a  \nin the ‘teenagers’ \ngroup (17-53 in full \nstudy) \nTo explore the experiences of women with \nendometriosis and their impact, and whether \nthese differ across three age groups (16-24; 25- 34; \nand over 35) \nSemi-structured focus groups Journal Article \n Plotkin (2004) \nUSA \n16 15-19 To explore the experience of adolescent girls with \nendometriosis \nSemi-structured interviews Thesis \nQuantitative Ahn et al. \n(2009) \nUSA \n14 13-22 To determine whether electrodermal measures at \nJapanese acupuncture points are associated with \nclinical measures in adolescents with \nendometriosis associated chronic pelvic pain \nRCT \nAuthor devised questionnaire \n(baseline); EHP-30; PedsQL; PSS \nJournal Article \n DiVasta et al. \n(2015)  \nUSA \n \n51  \n(at baseline) \n15-22 To assess the efficacy of add-back therapy for \nadolescents and young women treated with GnRH \nfor endometriosis \nRCT \nAuthor devised questionnaire (at \nbaseline); BDI-II; SF-36; MRS \nJournal Article \n DiVasta et al. \n(2018)  \nUSA \n \n295 \nin ‘adolescents at \ndiagnosis’ group \n(402 total) \n12-46b \nin ‘adolescents at \ndiagnosis’ group \n(median age 17) \nTo determine if there are differences between the \nsymptom presentation of adolescents and those of \nadults, based on age at diagnosis \nCross-sectional study (within \nlongitudinal cohort study) – Author \ndevised questionnaire; WERFEPHect \nJournal Article \n Dun et al. \n(2015)  \nUSA \n25 10-21 To describe the experience of adolescents with a \ndiagnosis of endometriosis including symptoms, \ndiagnostic experience, and treatment outcomes \nMedical records review Journal Article \n \n\n46 \n \n Table 3.2: Paper Characteristics (continued) \nType of \nstudy \nAuthor (year of \npublication), \nCountry  \nSample Size Sample age range \n(years) \nAim Data collection method Reference \nType \nQuantitative Estes et al. \n(2021) \nUSA \n72,677 women with \nendometriosis \n(matched with \n147,251 controls) \n18-60c  \n(some statistics \nstratified by age, \nincluding an <25 \nage group) \nTo compare the incidence of mental health \noutcomes in women with and without \ndocumented endometriosis \nRetrospective cohort study - Medical \nrecords review \nJournal Article \n Fong et al. \n(2017)  \nSingapore \n45 14-25 To describe the clinical profile of adolescents and \nyoung women with endometriosis \nMedical records review Journal Article \n Gallagher et al. \n(2017) \nUSA \n50 15-22 To characterise the quality of life in adolescents \nwith endometriosis, being treated with GnRHa plus \nadd-back therapy \nRandomised Controlled Trial \n–Author devised questionnaire; \nWERFEPHect \nJournal Article \n Gallagher et al. \n(2018) \nUSA \n360 with \nendometriosis (plus \n207 controls) \n10-24 To determine the impact of endometriosis on \nquality of life in adolescents and young adults \nCross-sectional study (within \nlongitudinal cohort study) – Author \ndevised questionnaire; SF-36 \nJournal Article \n González-\nEchevarría et al. \n(2019) \nPuerto Rico \n24 13-25 To determine the strategies used by teens and \nyoung adult women to cope with endometriosis \nsymptoms, and to assess whether coping \nstrategies may impact their QoL  \nCross-sectional study - Author devised \nquestionnaire; BAI; BDI-II; CSI; EHP-5; \nVAS \nJournal Article \n Schneider et al. \n(2020) \nUSA \n151 with \nendometriosis (plus \n287 without) \n18-25 To quantify the prevalence of dyspareunia and its \nimpact on the QOL of younger women diagnosed \nwith endometriosis \nLongitudinal cohort study – Author \ndevised questionnaire; SF-36 \nJournal Article \n Roman (2010) \nNew Zealand \n20 <20 To describe the effect of laparoscopic excision of \nendometriosis in an adolescent sample and \ncompare it to an adult sample \nComparative Cohort study \nMedical records review and Author \ndevised questionnaire; VAS; EQ-5D \nJournal Article \n Rowlands et al. \n(2016)  \nAustralia \n502 (ever reporting \ndiagnosis of \nendometriosis, \n11,238 total) \n18-23 To compare psychological distress levels among \nwomen with endometriosis or PCOS compared to \nwomen with no history of these conditions \nLongitudinal cohort study – Author \ndevised questionnaire; K-10 \nJournal Article \n \n\n47 \n \n Table 3.2: Paper Characteristics (continued) \nType of \nstudy \nAuthor (year of \npublication), \nCountry  \nSample Size Sample age range \n(years) \nAim Data collection method Reference \nType \nQuantitative Smorgick et al. \n(2013) \nUSA \n138 <24 To describe the prevalence of pain syndromes, \nmood conditions and asthma in adolescents and \nyoung women with endometriosis \nMedical records review Journal Article \n Wayne et al. \n(2008)  \nUSA \n18 13-22 To assess the feasibility of an RCT evaluating the \nuse of Japanese-style acupuncture for adolescents \nwith endometriosis \nRCT \nAuthor devised questionnaire \n(baseline); EHP-30; PedsQL; PSS \nJournal Article \nMixed-\nmethods \nBodén et al. \n(2013) \nSweden \n23 18-26 \n \nTo investigate the support women diagnosed with \nendometriosis received from the school health \ncare system during their school years and how it \naffected their quality of life \nAuthor devised questionnaire (open \nand closed ended questions) \nJournal Article \n Rush and \nMisajon (2018) \nAustralia \n148 \nin 18-25 age group \n(500 total) \n18-63d To explore the subjective wellbeing, health-related \nquality of life and lived experience of women living \nwith endometriosis \nAuthor devised questionnaire (open \nand closed ended questions); EHP-30; \nPWI \nJournal Article \n Staccone (2006) \nUSA \n9 15-21 To explore the psychological effects of \nendometriosis on adolescent girls and the \npsychological side effects of GnRH agonist \ntreatment \nInterviews and SF-12 Thesis \nNotes \na Subsequent thematic analysis for this paper only includes references and quotes specifically identifying the ‘teenage’ age group, those aged 16-24). \nb This study was included because the average age of those in the ‘adolescent’ group was 17 years old. \nc Subsequent thematic analysis for this paper only includes data specifically referring to the <25 age group \nd Subsequent thematic analysis for this paper only includes references and quotes specifically identifying the 18-25 age group \nBAI – Beck Anxiety Inventory; BDI – Beck Depression Inventory; EHP – Endometriosis Health Profile; EQ-5D – EuroQoL 5D, Health related quality of life measure; MRS – Menopause Rating \nScale; PedsQL – Paediatric Quality of Life; PWI – Personal Wellbeing Index; PSS – Perceived Stress Scale; SF12/SF36 – Short Form Health Survey; VAS – Visual Analogue Scale; WERFEPHect - \nWorld Endometriosis Research Foundation Endometriosis Phenome and Biobanking Harmonization Project standard clinical questionnaire \n\n48 \n \n3.3.1 Thematic Analysis \nThe remainder of this section outlines the results of the thematic analysis. The final themes were \nselected if they were consistent across the studies, or if they represented a meaningful finding about \nthe experience of living with endometriosis as an adolescent. There were f ive overarching themes. \nThemes and subthemes are displayed in Table 3.3, as well as which papers each were identified in. \n \n3.3.1.1 Symptoms \nSymptoms, and their impact, were frequently described in the reviewed studies. The main symptom \ndiscussed was pain, but adolescents also experienced a number of other symptoms of endometriosis, \nand used a variety of methods to manage them. \nPain \nPain is a s ignificant feature of  adolescents’ experiences of endometriosis, reported in all 7 \nqualitative/mixed-methods studies, and in 8 quantitative studies (see Table 3.3). Pain is usually located \nin the abdominal/pelvic area, and is described as “sharp”, “debilitating” and “stabbing” in qualitative \npapers. Frequency of pain is reported in quantitative papers; dysmenorrhea is experienced by 64% \n(Dun et al., 2015) to 99% of adolescents (Smorgick et al., 2013); acyclic pelvic pain is experienced by \n20% (Roman, 2010) to 66% of adolescen ts (DiVasta et al., 2018) , and; daily pain is reported by 35% \n(Smorgick et al., 2013). DiVasta et al. (2018) found that 50% of adolescents began to experience pain \nfrom their very first period (as compared to 34% of adults). \nIn addition to pelvic pain, adolescents experience pain in their backs, down their legs, and in their \nbowel and/or bladder. Adolescents also report dyspareunia, and rates among those that are sexually \nactive range from 66% (Smorgick et al., 2013) to 79% (Schneider et al., 2020). Those adolescents who \nexperience dyspareunia can have significantly lower QoL scores than those who do not (Schneider et \nal., 2020). The experience of d yspareunia is discussed in 2 qualitative and 2 mixed -methods papers \n(Moradi et al., 2014; Plotkin, 2004; Rush and Misajon, 2018; Staccone, 2006), with adolescents stating \nit makes them feel different to th eir peers (Plotkin, 2004) , and causes concern about future \nrelationships (Rush and Misajon, 2018; Staccone, 2006) . Rush and Misajon (2018)  found that the \nimpact of dyspareunia was particularly emphasise d by their younger age group (18 -25 year olds) in \ncomparison to the older participants, as illustrated in this quote from a 22 year old: “I can’t keep a \nrelationship because I can’t have sex, if I do it hurts and I’m scared to because I know the pain I’ll be in \nand that makes the pain worse. And not having sex is a deal breaker for most guys my age” (p.315). \n\n49 \n \nTable 3.3: Themes Identified in the Literature \nMain Theme Subtheme Articles which identify themes \nSymptoms Pain Bodén et al., 2013; Conboy et al., 2008; DiVasta et al., 2018; \nDun et al., 2015; Fong et al., 2017; González-Echevarría et al., \n2019; Highfield et al., 2006; Moradi et al., 2014; Plotkin, 2004; \nRoman, 2010; Rowlands et al., 2016; Rush and Misajon, 2018; \nSchneider et al., 2020; Smorgick et al., 2013; Staccone, 2006 \nOther Symptoms Bodén et al., 2013; Conboy et al., 2008; DiVasta et al., 2018; \nDun et al., 2015; Highfield et al., 2006; Moradi et al., 2014; \nPlotkin, 2004; Roman, 2010; Smorgick et al., 2013; Staccone, \n2006 \nSymptom Management Ahn et al., 2009; Conboy et al., 2008; DiVasta et al., 2018; Fong \net al., 2017; Gallagher et al., 2018; Highfield et al., 2006; Moradi \net al., 2014; Plotkin, 2004; Roman, 2010; Staccone, 2006; \nWayne et al., 2008 \nTime to diagnosis Time to obtain a diagnosis \nof endometriosis \nBodén et al., 2013; DiVasta et al., 2018; Dun et al., 2015; Fong \net al., 2017; Gallagher et al., 2018; Moradi et al., 2014; Plotkin, \n2004; Rowlands et al., 2016; Smorgick et al., 2013; Staccone, \n2006 \nFactors involved in the \nDiagnostic Delay \nBodén et al., 2013; Moradi et al., 2014; Plotkin, 2004; Staccone, \n2006 \nQuality of Life and \nEveryday Experience \nSchool and Work Bodén et al., 2013; Conboy et al., 2008; DiVasta et al., 2018; \nFong et al., 2017; González-Echevarría et al., 2019; Highfield et \nal., 2006; Moradi et al., 2014; Plotkin, 2004; Rush and Misajon, \n2018; Smorgick et al., 2013; Staccone, 2006 \nFriendships, Social Life, and \nDating \nDiVasta et al., 2018; Highfield et al., 2006; Moradi et al., 2014; \nPlotkin, 2004; Rush and Misajon, 2018; Staccone, 2006 \nSport and Recreational \nActivities \nBodén et al., 2013; DiVasta et al., 2018; Gallagher et al., 2018; \nGonzález-Echevarría et al., 2019; Highfield et al., 2006; Plotkin, \n2004; Staccone, 2006 \nSupport Bodén et al., 2013; Dun et al., 2015; Moradi et al., 2014; Plotkin, \n2004; Rush and Misajon, 2018; Staccone, 2006 \nQuality of Life Ahn et al., 2009; DiVasta et al., 2015; Gallagher et al., 2018; \nGallagher et al., 2017; González-Echevarría et al., 2019; Roman, \n2010; Rush and Misajon, 2018; Schneider et al., 2020; Wayne et \nal., 2008 \nPsychological and \nEmotional Wellbeing \nQuantitative Findings: \nDepression, Anxiety and \nPsychological Distress \nDun et al., 2015; Estes et al., 2021; Gallagher et al., 2018; \nGallagher et al., 2017; González-Echevarría et al., 2019; \nRowlands et al., 2016; Smorgick et al., 2013 \nQualitative Findings: \nEmotional Distress \nBodén et al., 2013; Conboy et al., 2008; Moradi et al., 2014; \nPlotkin, 2004; Rush and Misajon, 2018; Staccone, 2006 \nUncertainty \nSurrounding \nEndometriosis and \nFutures \nLack of Information about \nEndometriosis and its \nCause \nConboy et al., 2008; Moradi et al., 2014; Plotkin, 2004; Rush \nand Misajon, 2018 \nUncertainty towards the \nFuture \nConboy et al., 2008; Plotkin, 2004; Rush and Misajon, 2018; \nStaccone, 2006 \nFertility: Feeling ‘Off-time’ Conboy et al., 2008; Moradi et al., 2014; Plotkin, 2004; Rush \nand Misajon, 2018; Staccone, 2006 \n \n\n50 \n \nAdolescents report that the intensity of their pain can cause nausea and/or vomiting (Highfield et al., \n2006; Moradi et al., 2014; Plotkin, 2004; Staccone, 2006) . DiVasta et al. (2 018) found that 70% of \nadolescents reported nausea that accompanies pelvic pain. Adolescents feel frustrated when pain \ntreatments are ineffective (Conboy et al., 2008). González-Echevarría et al. (2019) found that 92% of \nadolescents in their sample reported pain to affect their daily life. Across the studies, pain has been \nreported to impinge  on many aspects of adolescents’ lives including school, sport, and socialising \n(discussed below) and their ability to cope with basic tasks: “…endometriosis pain makes everyday \ntasks 10 times harder. I find I need 3 times the energy of my friends just to make it through the day”  \n(Rush and Misajon, 2018: 313). \n \nOther symptoms \nAdolescents commonly experience a range of other symptoms of endometriosis. Abnormal bleeding, \nincluding heavy or irregular bleeding is  common, noted in 7 papers (Bodén et al., 2013; Dun et al., \n2015; Fong et al., 2017; Highfield et al., 2006; Moradi et al., 2014; Plotkin, 2004; Staccone, 2006). Dun \net al. (2015)  found that heavy bleeding, or ‘menorrhagia’, occurred in 44% of their sample, and \nabnormal or irregular bleeding in 60%. Qualitative papers indicate that bleeding can be heavy and \nprolonged, sometimes described as constant (Staccone, 2006), with girls concerned they would “bleed \nto death” (Plotkin, 2004: 74). \nSymptoms associated with the bowel or bladder were also common. They are described in 4 \nqualitative/mixed-methods papers (Highfield et al., 2006; Moradi et al., 2014; Plotkin, 2004; Staccone, \n2006), and include bladder urgency, diarrhoea, painful bowel movements, and painful urination. Dun \net al. (2015) found that 56% of their sample suffered from at least one gastrointestinal symptom, and \n52% had at least one genitourinary symptom. Papers suggest that between 26% (Smorgick et al., 2013) \nand 50% (DiVasta et al., 2018) of adolescents experience pain with urination. In addition, DiVasta et \nal. (2018)  found that 53.1% of adolescents experience more frequent bowel movements \naccompanying period pain. More general symptoms are also widely noted including headaches, \nnausea, sleep disturbances , dizziness , and abdominal bloating. Adolescents can also suffer from  \nchronic fatigue  resulting from their endometriosis, described by one girl as being incongruous for \nsomeone her age: “I’m a teenage girl. I shouldn’t have to come home after school and take a nap. That \njust isn’t right.” (Plotkin, 2004: 75). \n \n \n\n51 \n \nSymptom Management \nAdolescents use a range of different treatments to try to manage their symptoms. Papers suggest that \nNSAIDs are used by between 27.2% (Gallagher et al., 2018)  and 35.6% (Fong et al., 2017)  of \nadolescents, and unspecified OTC painkillers by up to 69.2% (DiVasta et al., 2018) . Stronger \nprescription painkillers are also used, and Smorgick et al. (2013) found that 66% of their sample had \nused narcotics.  \nAdolescents are also prescribed hormonal medication such as the contraceptive pill and GnRH \nagonists. The rate of their use is not clear in most papers, however Smorgick et al. (2013)  note that \n99% of the young women in their sample used some form of hormonal suppression. DiVasta et al. \n(2018) found that 37.6% of adolescents stated that they had taken hormonal medication without their \npain improving. Qualitative papers report a mixed response to medical treatments, but most \ndiscussion centres on the lack of improvement and bothersome side-effects. These side effects can be \nquite extreme, and while some tr y to put up with them in an effort to control their pain, others are \nforced to discontinue their medication (Conboy et al., 2008; Highfield et al., 2006; Moradi et al., 2014; \nPlotkin, 2004; Staccone, 2006) . Some adolescents describe a  complex medical regime, whereby a \nconcoction of medications is taken each day to treat all of their symptoms including pain, headaches \nand chronic fatigue, as well as additional medications to counteract the side effects  (Highfield et al., \n2006; Plotkin, 2004): “I am seventeen years old and I have all these medic ations. None of my friends \nhave a dresser drawer full of medications.” (Plotkin, 2004: 63). \nAdolescents also undergo surgical treatment for their endometriosis, most notably a laparoscopy. \nRoman (2010) found that surgical excision of endometriosis significantly improved dysmenorrhea and \npelvic pain symptoms, and had a positive effect on QoL, however 10% of adolescents underwent a \nsecond laparoscopy within 2 years due to retu rning symptoms. Dun et al. (2015)  found that 80% of \nadolescents had resolved or improved pain at 1 -year post-laparoscopy, 12% had continued pain and \n8% had recurring pain. Surgical treatment is described in qualitative papers to  provide an \nimprovement in symptoms, but this is often short lived, with many soon experiencing symptom \nrecurrence (Conboy et al., 2008; Moradi et al., 2014; Plotkin, 2004). Adolescents in the study by Plotkin \n(2004) describe a treatment cycle of trying hormonal treatments, then surgery, followed by short term \nrelief before symptoms return, and then further hormonal treatments are required, and so on. This \ncan cause frustration, and despite their age, there are reports of completed (Plotkin, 2004) or desired \n(Moradi et al., 2014) hysterectomy among adolescents.  \n \n\n52 \n \n3.3.1.2 Time to Diagnosis \nThere were 8 papers which discussed findings related to the time it takes adolescents to receive a \ndiagnosis of endometriosis; 2 qualitative, 4 quantitative and 2 mixed -methods (see Table 3.3). These \npapers discuss both the time to diagnosis, and the various contributing factors, including pain \nnormalisation, lack of awareness of endometriosis, and the receipt of alternative diagnoses. \n \nTime Taken to Receive a Diagnosis of Endometriosis \nThe time taken to obtain a diagnosis of endometriosis is often referred to on two levels; the patient \nlevel, occurring between symptom onset and seeking medical help, and the medical level, between \nseeking medical help and o btaining a diagnosis (Ballard et al., 2006). Two papers quantified their \nfindings on the former, and suggest that after their symptoms begin, adolescents wait an average of \n1 (DiVasta et al., 2018) to 2 years (Bodén et al., 2013) before seeking medical help for their symptoms. \nTwo papers reported findings on the medical level delay, which averaged 10.9 months (Dun et al., \n2015) to 4.8 years (Bodén et al., 2013) . The majority of papers reported on the total length of time \nbetween symptom onset and receipt of a diagnosis, which ranged from an average of 22.8 months \n(Dun et al., 2015) to 6.87 years (Bodén et al., 2013). However, in addition to the average, some studies \nalso reported the range of time between symptom onset and diagnosis, the lowest of which was 1 \nmonth (Dun et al., 2015), and the highest was over 12 years (Bodén et al., 2013). Two papers compared \nthe time to diag nosis between those diagnosed as adolescents and those diagnosed as adults, and \nfound that those diagnosed as adolescents had a shorter diagnostic delay (DiVasta et al., 2018; Moradi \net al., 2014). \n \nFactors Involved in the Diagnostic Delay \nInsight into the factors involved in the diagnostic delay predominantly come from qualitative or mixed-\nmethods papers (see Table 3.3). One factor is the normalisation of symptoms, which is the tendency \nto liken them to normal menstruation. Adolescents themselves have described their belief that their \nsymptoms were just normal menstruation, either because menstruation was not often something that \nwas typically discussed (Bodén et al., 2013), or because they just assumed they were unlucky to have \npainful periods (Moradi et al., 2014). Family has also been noted to normalise symptoms, particularly \nmothers who have also experien ced similar symptoms (Bodén et al., 2013) . Medical professionals, \nsuch as doctors and school nurses, are more widely reported across the papers to dismiss adolescents’ \nsymptoms as being normal period pains, or even suggesting they are all in their heads (Bodén et al., \n\n53 \n \n2013; Moradi et al., 2014; Plotkin, 2004; Staccone, 2006) . This has resul ted in adolescents feeling \nfrustrated and distressed, and questioning the validity of their own pain (Plotkin, 2004; Staccone, \n2006). \nContributing to this normalisation of symptoms is a lack of awareness of endometriosis. Adolescents \nthemselves have reported little awareness of endometriosis prior to their symptom onset or diagnosis \n(Bodén et al., 2013; Moradi et al., 2014): “Yeah, I should be aware but it was kept as a secret, I didn’t \nknow that this exists.” (Moradi et al., 2014: 6). Adolescents also comment on the ignorance of others \nsurrounding endometriosis. Doctors and school nurses are a source of frustration as they are said to \nlack sufficient knowledge about endometriosis (Bodén et al., 2013; Conboy et al., 2008; Moradi et al., \n2014). Some papers report on medical professionals who believe that adolescents are too young to \nhave endometriosis (Moradi et al., 2014; Plotkin, 2004; Staccone, 2006). This belief delays referrals to \nsecondary care, or results in inappropriate referrals and misdiagnoses (Dun et al., 2015; Moradi et al., \n2014). Friends and family  are also unaware of endometriosis and are therefore unable to relate or \nunderstand. Adolescents want their friends, teachers, and health professionals to be better educated \nand more knowledgeable about the condition (Bodén et al., 2013; Plotkin, 2004). \nDiagnosis itself brings about mixed feelings for adolescents. They have reported partly feeling relieved, \nat finally receiving a diagnosis and being able to legitimise their pain to others, but also frustration and \nuncertainty, precipitated by the lack of cure and ongoing nature of endometriosis (Moradi et al., 2014; \nPlotkin, 2004; Staccone, 2006).  \n \n3.3.1.3 Quality of Life and Everyday Experience \nThere were 18 papers which reported findings relating to the everyday experiences of adolescents \nwith endometriosis, and its impact on QoL (4 qualitative, 11 quantitative, and 3 mixed -methods; See \nTable 3.3). Everyday experiences include disruptions to school and work, social life and dating, and \nsport and recreational activities. Also discussed in this theme is the support networks of adolescents. \n \nSchool and Work \nDisruptions to school are widely reported and include school absences and interference with academic \nperformance. Quantitative findings suggest that between 24% (Fong et al., 2017) and 61% (DiVasta et \nal., 2018)  of adolescents with endometriosis experience such disruptions. However, in two of the \nqualitative papers (Plotkin, 2004; Staccone, 2006)  all participants report school disruptions, most \n\n54 \n \nnotably school absences. These absences last anywhere from a couple of days each month, to weeks \nor even months at a time. Upon returning to school, adolesc ents struggle to catch up with the work \nthey have missed (Plotkin, 2004; Staccone, 2006). When in attendance, adolescents report poor focus \nand productivity because of their symptoms  (Moradi et al., 2014; Plotkin, 2004) . Explaining school \nabsences to friends or teachers can be difficult due to both a lack of physical sign of illness, and others’ \nlack of understanding about endometriosis (Plotkin, 2004). \nEndometriosis can also have a long -term bearing on education; causing adolescents to drop out of \nschool altogether (Moradi et al., 2014; Plotkin, 2004; Staccone, 2006) , or turn to  home-schooling \n(Plotkin, 2004; Staccone, 2006) . Future educational plans sometimes need to be  re-evaluated; with \nlong-established university dreams having to be changed, deferred, or dropped completely  (Moradi \net al., 2014; Plotkin, 2004; Staccone, 2006) . This demographic mostly emphasised the impact of \nendometriosis on school and education, but some papers also indicate that there can be disruptions \nto work as well (Conboy et al., 2008; DiVasta et al., 2018; Fong et al., 2017; Plotkin, 2004; Rush and \nMisajon, 2018). \n \nFriendships, Social Life and Dating \nOnly one quantitative study reported on the impact of endometriosis on social activities (DiVasta et \nal., 2018), in which 89.7% of adolescents indicated that pelvic pain interfered with social activities, \nwith 64.1% indicating moderate to extreme interference. These rates were slightly higher than for \nadults in the study (ibid). Social impact is a more predominant theme in qualitative/mixed -methods \nresearch, reported in five papers. Both Moradi et al. (2014) and Rush and Misajon (2018) found that \nsocial life was a prominently highlighted impact of endometriosis for adolescents, as compared to \nolder participants. Social interference is sometimes described as being due to school absences, and \nmissing out on the social aspects of school, like spending time with friends (Plotkin, 2004). In addition, \nattendance at social events is often limited (Highfield et al., 2006; Plotkin, 2004; Staccone, 2006), and \nnegative mood states, such as anger or irritability, make socialising less desirable (Moradi et al., 2014; \nStaccone, 2006), as highlighted in this quote: “Just because yeah, it’s stressful and you’re angry and I \nguess that’s the point where it can affect your relationships with people more seriously” (Moradi et al., \n2014: 8). Others’ lack of awareness of endometriosis can intensify feelings of isolation and can also \nput a strain on relationships  (Plotkin, 2004; Staccone, 2006) . Although not widely discussed, some \nadolescents report that endometriosis makes dating very difficult, particularly when partners do not \nunderstand (Rush and Misajon, 2018; Staccone, 2006). \n\n55 \n \n \nSport and Recreational Activities \nTwo quantitative papers r eported the impact of endometriosis on exercise; Gallagher et al. (2018)  \nfound that 47.5% of adolescents avoid exercise due to pain or heavy blood flow associated with \nmenstruation, and DiVasta et al. (2018)  found that 69.3% of adolescents note moderate to extreme \ninterference with exercise due to pelvic pain. González-Echevarría et al. (2019) found that all but one \nof their sample reported difficulty walking. Qualitative research describes how adolescents often have \nto give up or reduce extracurricular activities, sports, and hobbies, usually as a result of pain  (Bodén \net al., 2013; Plotkin, 2004; Rush and Misajon, 2018; Staccone, 2006) , and as one described: “It just \ntakes one thing after another.” (Staccone, 2006: 93). \n \nSupport \nTo manage the day-to-day aspects of living with endometriosis, adolescents draw on various sources \nof support. They identify their mothers as their key source of support (Plotkin, 2004; Staccone, 2006), \nwho not only provide practical and emotional support, but they also advocate for their daughters in \nseeking medical help and referrals (Plotkin, 2004). This is reinforced by Dun et al. (2015), who found \nthat mothers were the primary referral source for adolescents to the tertiary care clinic. Family also \nprovide financial support for this age group (Moradi et al., 2014) . Additional support is provided by \nothers with endometriosis via online support groups, who are a ble to understand their experiences, \nand answer questions about endometriosis (Plotkin, 2004). This is somewhat in contrast to friends, \nwhose support is limited due to their lack of understanding about endometriosis (Plotkin, 2004; Rush \nand Misajon, 2018; Staccone, 2006).  \n \nQuality of Life \nThere were 9 quantitative/mixed methods pap ers (see Table 3.3) which used measures of QoL, \nincluding general QoL measures (i.e. SF-36, EQ5D, PedsQL) and endometriosis specific measures (EHP-\n30, EHP-5). Five of these papers measured QoL as part of their research into treatment efficacy (Ahn \net al., 2009; DiVasta et al., 2015; Gallagher et al., 2017; Roman, 2010; Wayne et al., 2008). All papers \nindicate reduced QoL among adolescents with endometriosis, when compared to controls or \nnormative data. Rush and Misajon (2018)  found that their youngest group of participants (aged 18 -\n25) had consistently poorer QoL compared to the ir older participant groups. Gallagher et al. (2018)  \n\n56 \n \nexplored some of the factors that may affect QoL, and found that more severe pelvic pain, a longer \ndiagnostic delay, and an earlier age at menarche are associated with poorer Q oL. Schneider et al. \n(2020) researched adolescents with endometriosis and compared those who experience dyspareunia \nand those who do not, and found those who do had signi ficantly lower QoL scores. In assessing the \nimpact of coping strategies on QoL, González-Echevarría et al. (2019) found that maladaptive coping \nstrategies, such as auto criticism and social withdrawal, were associated with poorer QoL, and \nadaptive coping strategies, such as social support and cognitive restructuring, were associated with \nbetter QoL. \n \n3.3.1.4 Psychological and Emotional Wellbeing \nThere were 11 papers that offered findings relating to the impact of endometriosis on psychological \nor emotional wellbeing; 5 quantitative, 3 qualitative and 3 mixed -methods papers (see Table 3.3). \nFindings from the qualitative and quantitative work are discussed separately. \n \nQuantitative Findings: Depression, Anxiety and Psychological Distress \nMost of the quantitative papers report on depression and anxiety within their samples. Rates of \ndepression vary between studies, which may be due to variations in the way it was measured or \nreported (i.e. self-report Vs medical records screening). For example, Dun et al. (2015) found that only \n4% of their sample had depressive symptoms, Gallagher et al. (2018) found that 16.4% of their sample \nreport depression requiring medication/therapy, and Smorgick et al. (2013) found that approximately \n42% of their sample have a diagnosis of depression. Two studies measured depressive symptoms \n(using the Beck Depression Inventory), which found that between 26% (Gallagher et al., 2017)  and \n54% (González-Echevarría et al., 2019) of adolescents have scores indicative of a mild or greater level \nof depression. Two studies report on diagnosed/m edicated anxiety among their adolescent sample, \nwith close agreement of rates, of approximately 23% (Smorgick et al., 2013) and 25.6% (Gallagher et \nal., 2018). However, using the Beck Anxiety Inventory (BAI), González-Echevarría et al. (2019)  found \nthat approximately 79% of adolescents in their sample had scores indi cative of at least mild anxiety \n(although their sample size was small). In addition, Smorgick et al. (2013)  found that 48% of \nadolescents have one or more mood disorders (depression and/or anxiety). \nWhile rates of depression and anxiety among adolescent with endometriosis vary, it does appear that \nlevels of psychological distress are higher in adolescents with endometriosis than in controls. For \nexample, Gallagher et al. (2018)  found significantly higher levels of both anxiety and depression in \n\n57 \n \nadolescents with endometriosis than in controls of the same age. Rowlands et al. (2016) noted similar \nresults, however they used a measur e of overall psychological distress. Their results indicate a \nsignificantly higher odds of having moderate to severe psychological distress in those with a diagnosis \nof endometriosis compared to those with no lifetime diagnosis of endometriosis. Rowlands et al. \n(2016) additionally found that those with a recent diagnosis of endometriosis were more likely to have \nhigher psychological distress in the year prior to their diagnosis. Finally, in comparison with older \nparticipants with endometriosis, Estes et al. (2021) found that hazard ratios indicated significantly \nhigher risk of anxiety, depression, and self -directed violence in those aged under 25  with \nendometriosis. \n \nQualitative Findings: Emotional Distress \nAdolescents in qualitative research describe emotional distress  associated with endometriosis, \nincluding feeling stressed, emotional, miserable, depressed and even suicidal (Conboy et al., 2008; \nMoradi et al., 2014; Plotkin, 2004; Rush and Misajon, 2018; Staccone, 2006). Some of these emotions \nare in response to pain, but other factors also play a role. The failure of others to acknowledge pain \nor symptoms has been reported to make adolescents feel distressed, and question whether they are \ngoing ‘crazy’ (Plotkin, 2004; Staccone, 2006) . They also experience social isolation and loneliness, \neither because of their sym ptoms, or again due to not being believed by others (Plotkin, 2004; \nStaccone, 2006) . Some adolescents report additional emotional distress due to their medication, \nincluding mood swings, depression, and in th e worst case a suicide attempt (Conboy et al., 2008; \nMoradi et al., 2014; Plotkin, 2004; Staccone, 2006). Medication can also alter physical appearance and \nbody image, and one study reported on the effect of hormonal medications, which can stop periods, \nand reduce breast size, thus causing a loss of feminine identity (Staccone, 2006). \n \n3.3.1.5 Uncertainty Surrounding Endometriosis and Futures \nThis theme represents findings which have come exclusively from qualitative research (3 qualitative \nstudies, 2 mixed-methods study: see Table 3.3). \n \nLack of Information about Endometriosis and its Cause \nThe lack of awareness of end ometriosis promotes feelings of uncertainty in adolescents. Owing to \ntheir lack of knowledge, health professionals are often unable to provide appropriate information to \n\n58 \n \nadolescents, leaving them feeling confused and having to seek information elsewhere, such as on the \ninternet (Moradi et al., 2014; Plotkin, 2004). A lack of understanding of what is wrong, particularly in \nthe period before diagnosis, generates further uncertainty, and mak es it difficult to explain pain or \nabsences to others (Plotkin, 2004; Staccone, 2006). The enigmatic nature of endometriosis, and thus \nlack of concrete medical explanation, causes frustration in adolescents and often le aves them \nsearching for a cause (Conboy et al., 2008; Plotkin, 2004). \n \nUncertainty towards the Future \nThere are many aspects of life with endometriosis that cause adolescents to feel uncertainty towards \ntheir future. The lack of curative treatment, and the high rate of symptom reoccurrence following \nsurgery, can leave them fearing continued pain and additional surgeries (Conboy et al., 2008; Plotkin, \n2004). Some also have  concerns over future relationships, and being able  to find an understanding \npartner (Plotkin, 2004; Rush and Misajon, 2018; Staccone, 2006) . However, despite these concerns, \none paper did find t hat adolescents had a remarkable sense of hope and optimism for the future  \n(Staccone, 2006). \n \nFertility: Feeling ‘Off-time’ \nAs evident in five studies (see Table 3.3), adolescents can describe feeling ‘off-time’; often finding \nthemselves confronted with concerns that are incongruent with their life stage. Fears and doubt over \ntheir future fertility prospects are consistently recognised in all 5 papers. This is an issue they feel that \nothers their age would not normally have to worry about: “Most kids my age are concerned where the \nnext party is going to be, and I am concerned if I can ever have children.”  (Plotkin, 2004: 62). These \nfertility fears may prompt adolescents to re -evaluate their futures; either accepting at an early age \nthat they might not have children (Plotkin, 2004) , or interrupting the ‘typical’ life cours e to have \nchildren early (Moradi et al., 2014; Plotkin, 2004).  \n \n3.4 Discussion \nThis review has highlighted that there is a dearth of research addressing the experience and \npsychosocial impact of endometriosis in adolescents. While 21 papers  were eligible for inclusion in \nthis review, very few explicitly aimed to  explore the adolescen t experience, and many aimed to \ninvestigate treatment efficacy . Several studies that were identified by the literature search were \n\n59 \n \nexcluded, because although they incorporated younger participants in their samples (i.e. those aged \n16 and over), they did not stratify results by age, and therefore were unable to offer insight into  the \nexperience of endometriosis during this crucial developmental stage. \nDespite the limited evidence base, this review does provide insight into the experience and \npsychosocial impact of endometriosis in adolescents. Using a systematic thematic approach, the \nliterature has been synthesized to form f ive themes which describe th e key aspects of their \nexperience; symptoms, time to diagnosis, QoL and everyday experiences, psychological and emotional \nwellbeing, and uncertainty surrounding endometriosis and futures.  \nSome aspects of the adolescent experience of endometriosis are similar to those described by women \n(see Section 2.7 of previous chapter). However, the theme ‘QoL and everyday experiences’ shows how \nendometriosis affects school attendance, social life, dating, and sport – things which are considered \nto be core aspects of a dolescent life. Adolescence is a crucial stage of psychosocial development; a \ntime to acquire an independent identity, gain acceptance from peers , and explore romantic \nrelationships (Christie and Viner, 2005; Erikson, 1968) . As such, a chronic illness experienced during \nthis time, and particularly one that limits those key activities of daily adolescent life, can pose a threat \nto their adolescent identity (Suris et al., 2004).  \nIn addition to summarising past research on adolescents’ experiences of endometriosis, this review \nhas highlighted several areas which are yet to be well explored. There was little discussion of support \nnetworks, and the impact of such support on the illness experience. When it was discussed, most \nreference was given to the support provided by mothers (Plotkin, 2004; Staccone, 2006) , and \ntherefore further exploration of the role of fathers, siblings, friends, and other connections is needed. \nThose papers that do discuss support were conducted 15-20 years ago, before the explosion of social \nmedia, and so the role of these forms of support for adolescents also warrant further investigation. \nMany papers reported adolescents’ treatment experience, with particular focus on treatment efficacy \nand associated side effects. However, there was a lack of enquiry into w hat adolescents’ main \nconcerns were regarding their treatment. Trials investigating surgical treatments for endometriosis \nare often judged on outcomes associated with dysmenorrhea, dyspareunia, and fertility (Hirsch et al., \n2016). While such outcomes might be pertinent for adult women with endometriosis, they may not \nbe the primary concerns of adolescents. \nWith the exception of the paper by Schneider et al. (2020) , d yspareunia was seldom \ndiscussed/explored, perhaps because researchers felt it inappropriate to ask younger participants \nabout this. However, it may be an important factor to explore further  in adolescents and young \n\n60 \n \nwomen, because their sexual lives are at a formative stage, and so painful sexual encounters at this \ntime might have negative implications for their developing sexual identity and subsequent relationship \nbuilding (Donaldson and Meana, 2011) . In addition, there was no evidence of exploration into pain \ndue to tampon use, which may be a symptom experienced by younger adole scents who are not yet \nsexually active. Previous research has shown an association between dyspareunia and pain during \ntampon insertion in adolescents (Landry and Bergeron, 2009), and so further exploration into this as \na possible symptom in adolescents with endometriosis is warranted. In the absence of dyspareunia, it \ncould prove to be a symptom worthy of diagnostic investigation in this age group.  \n \n3.4.1 Strengths and Limitations \nA key strength of this review is the inclusion of studies which looked at the impact of endometriosis \nin those who were adolescents at the time of the research. This therefore gave them the chance to \ndiscuss salient issues, and the data was not affected by potential recall bias. The review also included \nboth qualitative and quantitative research, therefore providing a  more thorough exploration of the \nadolescent experience (Broom and Willis, 2007) . However, while there were 21 studies eligible for \ninclusion in this review, the criteria for inclusion was lenient, and as such case report studies, medical \nrecords review studies, and research completed for academic qualifications were all included, which \nmight not usually meet the standards of other reviews. Furthermore, in addressing the quality criteria, \nthe randomised controlled trials and mixed methods studies were deficient in some areas.  \nThere are also some limitations of the studies included in the review. The majority originated in the \nUSA, and therefore the findings may not be applicable to other countries. Little demographic \ninformation was given about participants, other than ethnicity, which was reported by 12 out of 21 \npapers. Except for the paper by Fong et al. (2017), which was conducted in Singapore, in the majority \nof studies the ethnicity was predominately white/Caucasian , at rates of between 77.8% and 100%. \nThis indicates a lack of ethnic diversity among participants.  Finally, most studies failed to provide a \ndefinition of “adolescence”, or a rationale for the age range chosen, and they lacked consensus on the \nage ranges chosen to represent this demographic.  These limitations indicate  the obvious need for \nfurther research in this area. \n \n3.5 Conclusion \nThis review provides an overview of the current knowledge about adolescents’ experiences of \nendometriosis, however there is a limited evidence base on which this knowledge can be drawn. This \n\n61 \n \nreview has revealed that there are several similarities between the adolescent and adult experience, \nhowever their main concerns about endometriosis can differ by age (Moradi et al., 2014) , and the \nstage of one’s life can greatly impact on how illness is experienced (Grinyer, 2007). Therefore, it is \nnecessary to build on the research base focusing solely on adolescents, to identify their treatment \npriorities and clinical needs. This review forms the foundations of such a research base, as it has \nhighlighted what is already known, and which areas require further exploration.  \n \n  \n\n62 \n \nChapter 4. Literature Review Summary and Thesis Methodology \n4.1 Introduction \nThis chapter will begin by providing a summary of the gaps that have been identified in the literature \npertaining to adolescents with endometriosis. Following this will be the rationale, aims, and approach \nof the research conducted within this thesis. \n \n4.2 Identifying Gaps in Previous Research \nChapters 2 and 3 provide an overview of  the research addressing the experience and psychosocial \naspects of endometriosis and menstruation, with particular emphasis on the adolescent population. \nChapter 3 highlighted that there is limited research specifically focussing on the experience or \npsychosocial aspects of endometriosis in adolescents, and  much of the existing research primarily \naimed to explore the ex perience of treatment for endometriosis. An exception was Plotkin’s thesis \n(2004), however, this was conducted almost 20 years ago, and there have been a number of changes \nin society over this time. There were several areas which therefore required further exploration: \n• There was no previous research conducted with adolescents in the UK. \n• There was little exploration into adolescents’ support networks, including the role of \nonline/social media support. \n• There was little exploration into adolescents’ experiences of dyspareunia, and no exploration \ninto pain due to tampon use. \n• There was a lack of enquiry into adolescents’ main treatment concerns. \nThe body of research addressing women’s experience of endometriosis was found to be better \nestablished, and included UK evidence. Although much of this research did not specifically include  \nadolescent perspectives, the women in such research often recalled their experiences as a teenager . \nWhile this provides essential insight into the adolescent experience, there r emained several reasons \nas to why research with adolescents was still needed.  \nFirstly, the aim of such research was never to explore the adolescent experience specifically, and \nreferences to teenage years were simply a by-product of the research. Secondly, such research would \nhave relied on the retrospective recall of an adult’s teenage years, raising potential issues of memory \ninaccuracy (Leedy and Ormrod, 2010) . The issue of ‘fading memory’, or being unable to accurately \nremember one’s own experience, has been noted in other health research (Miller et al., 2 010). In \naddition, researchers have suggested that people can be subject to a ‘fading affect bias’, in which \n\n63 \n \nunpleasant memories are recalled less accurately than pleasant memories (Walker et al., 2003) , \npotentially because we work harder to dampen the emotional impact of negative events. Therefore, \naspects of the experience which might have been salient during adolescence, might be given less \nweight as an adult. Finally, the main concerns of the experience of endometriosis can differ according \nto one’s age group (Moradi et al., 2014), and the stage of one’s life can greatly impact on how illness \nis experienced (Burles and Thomas, 2012) . Adolescents themselves therefore needed to be given a \nvoice, to enable them to discuss and raise issues that were important to them at the time.  \nWhile there are some aspects of the adolescent and adult experience of endometriosis that may differ, \nthe limited evidence base with adolescents has identified several common findings between the two \ngroups. One of these is the lengthy diagnostic delay. Ballard et al. (2006) discussed potential reasons \nfor this delay, and amongst them is the notion that women or teenagers may delay seeking help as \nthey do not recognise that their periods are atypical. In addition, they often have not heard of \nendometriosis. In order to address the diagnostic delays caused by this lac k of awareness, many \nresearchers have suggested that improving the education around endometriosis and menstrual health \nis a key priority, which should be addressed in schools (Cox et al., 2003c; Manderson et al., 2008; \nMarkovic et al., 2008). However, much of the research upon which these recommendations are based \nis qualitative in nature, using small sample sizes that reflec t the experiences of only those who have \nendometriosis. As such, it is not possible to draw conclusions of the awareness amongst the wider \nadolescent population, whom such education would be targeted at.  \nTo investigate the need for improving education and  awareness, it would be useful to draw upon \nquantitative research, which can provide an indication of the public awareness of endometriosis \namong a large population of adolescents. Research studies conducted in Italy (Zannoni et al., 2014)  \nand Australia (Armour et al., 2021a; Parker, 2006) have provided some insight into this. Each surveyed \nadolescents from the public about their menstrual health, and additionally asked if they had ever \nheard of endometriosis. They found that 18.8% (Zannoni et al., 2014), 23.6% (Parker, 2006), and 64% \n(Armour et al., 2021a) of the adolescents had heard of endometriosis.  The latter paper was conducted \nmost recently, and the higher rate of awareness could reflect growing awareness following efforts of \nAustralian advocacy organisations , and increased media coverage of the annual Endometriosis \nAwareness Month (Armour et al., 2020b). There are no studies conducted in the UK and therefore we \ndo not know whether adolescents in the UK are aware of endometriosis. \nThe aforementioned studies provide a useful indication of the awareness of endometriosis among \nadolescents, however, it should be highlighted that having ‘heard of’ something is not necessarily \nsynonymous with having any knowledge or awareness of it. Shadbolt et al. (2013) addressed this by \n\n64 \n \nasking their participants to also describe endometriosis in their own words, therefore identifying those \nwho could provide an adequate description, indicative of knowledge and awareness. They found that \nmany participants were unable to provide an accurate description. Similar research was needed with \na UK sample, given that the health and education systems utilised in the UK differ from those in the \ncountries where previous research has been conducted. By obtaining data on the awareness of \nendometriosis in adolescents in the UK, it would be possible to find out if there is a need to educate \nadolescents in this country on this topic.  \nIn addition, while much of the qualitative research on endometriosis experiences indicates delayed \nhelp seeking due to lack of understanding about what symptoms of menstruation are ‘normal’, there \nis no current picture of what symptoms adolescents in the UK perceive to be normal, as has been \nstudied abroad (Armour et al., 2021a) . By obtaining such data, we could have some understanding \nabout what adolescents need to know about menstruation, and their educational needs regarding \nrecognising problematic menstruation. Furthermore, as highlighted in a recent systematic review of \nthe prevalence of dysmenorrhea in adolescents (Armour et al., 2019a) , there are no UK studies \naddressing the prevale nce or impact of dysmenorrhea in this age group. Finally, an up to date \nunderstanding of their communication patterns and preferences around menstruation would also be \nbeneficial, particularly given that adolescents may miss the opportunity to identify pro blematic \nmenstruation due to communication taboos (Burrows and Johnson, 2005; Markovic et al., 2008).  \n \n4.3 The Research Questions \nThere were several gaps in the academic understanding of endometriosis and menstruation in \nadolescents, and as such this provided the rationale for further research.  Therefore, to contribute \nfurther to the knowledge and understanding in this area , this thesis was guided by the following \nresearch questions: \n1. What are adolescents’ experiences of endometriosis? \n2. What are the experiences of menstruation in adolescents? What symptoms do they perceive \nto be typical, and are they aware of endometriosis? \nThese research questions stemmed from the same evidence base, and therefore were interrelated, \nbut they addressed slightly different populations. The second question focused on adolescents within \nthe general population, however, the first question focused on  a subset of that population; \nadolescents with endometriosis. Therefore, these questions were addressed by conducting two \nseparate studies; study 1, exploring the experiences of adolescents who have endometriosis, and \n\n65 \n \nstudy 2, identifying the menstrual characteristics and awareness of endometriosis among adolescents. \nEach of these studies had its own list of objectives: \n \nObjectives Study 1: \n• To explore the experiences of adolescents living with endometriosis, and the impact of \nendometriosis on their lives and identities as adolescents/young adults. \n• To explore the impact of experiencing a stigmatised, gendered condition during adolescence, \nand to contribute to the literature on biographies and chronic illness. \nObjectives Study 2: \n• To describe the menstrual experience in adolescents and provide insight into their perceptions \nof the typicality of menstrual symptoms. \n• To obtain an understanding of the awareness of endometriosis amongst adolescents in the \nUK, and an indication of their desire to learn about it. \n• To provide data to support the work of organisations such as Endometriosis UK, who advocate \nfor the need to improve education around menstrual health and endometriosis. \n• To inform schools and government educational bodies of adolescents’ MHE needs. \n \nIt was important to ensure that in addition to addressing academic gaps, the research questions and \nobjectives would create knowledge that was of particular concern to the lives of girls and women . \nTherefore, Endometriosis UK was consulted on their content. \n \n4.4 Methodological Approach \nAlthough this thesis has both a qualitative and a quantitative study, it is not a mixed methods study. \nOne of the key features of a mixed methods study is that the two studies are integrated at some stage \nof the research process (Bryman, 2006). In this thesis, there is no formal integration of the two studies. \nThey were designed, analysed, and interpreted separately. Therefore, in the chapters that follow, each \nstudy has its own Methods, Results, and Discussion. However, the final chapter in th e thesis will \ndiscuss how the findings of the two studies can inform each other, and will therefore draw together \nsome of the results. In this way, the research is similar to some mixed methods studies, for example, \nwhen one uses the findings from a quantitative study to contextualise some of the issues raised in the \n\n66 \n \nqualitative data (Stewart and Cole, 2007). A benefit of such a research design is that it can enable the \nqualitative findings to be broadened or generalised, thus magnifying their strength in terms of validity \nand interpretive power (Hesse-Biber, 2010; Stewart and Cole, 2007). Therefore, although not using a \nmixed methods design, the final chapter will integrate some of the findings from each study, which \nwas considered a particularly useful tool for outlining the future recommendations arising from this \nthesis. The methodological approach for each study, and their justification, will now be described.  \n \n4.4.1 Study 1: Qualitative Study \nUpon the initiation of this research, there was a lack of current and up to date knowledge about the \nadolescent experience of endometriosis. As such, this research aimed to address this gap, and a \nqualitative methodology was considered the most appropriate way of doing so. Previous research \naddressing women’s experiences of endometriosis has used both qualitative and quantitative \nmethodology (Culley et al., 2013), and therefore, there was scope to use either method in this study.  \nMuch of the previous quantitative research on WWE has assessed the psychosocial impact of \nendometriosis using measures of quality of life (i.e. SF36, EHP -30, EHP-5), pain (i.e. visual analogue \nscales) and mental wellbeing (i.e. BDI, HADS), as well as additional surveys designed for specific study \naims. While quantitative research has been useful in determining, for example, the prevalence of \npsychosocial impairment in those with endometriosis, it is unable to provide an understanding of why \nthis impairment occurs (Broom and Willis, 2007). Measures of psychosocial impact attempt to quantify \na subjective experience, such as pain (Young et al., 2015) , and are unable to extract the qualities of \nillness experience that are often important for individuals (Kleinman and Seeman, 2000).  \nFurthermore, the use of such measures with younger adolescents with endometriosis may not be \nappropriate, because some measures have not been developed or validated for this population (Gao \net al., 2006).  \nAdolescents with endometriosis represent a population that have received little research attention, \nand as a result, we have little understanding of their experiences of living with endometriosis. \nTherefore, further exploration is required. According to Creswell (2007), when a need for exploration \narises, such as to hear t he voices of an understudied population, then qualitative research is \nappropriate. Qualitative research provides a thorough and complex understanding of an issue, which \ncannot always be captured on pre -determined surveys, designed around the findings we ma y \nanticipate. Qualitative research not only allows for an exploration of what the experiences are, but \nalso how people make sense of their experiences (Bryman, 2016). This was therefore an appropriate \nmethodology to address the first research question. \n\n67 \n \n \n4.4.2 Study 2: Quantitative Study \nAs discussed above, there is a dearth of research, particularly in the UK, which investiga tes both the \nmenstrual experiences of adolescent girls, and their awareness of endometriosis. This research study \nwas therefore designed to address this, and a quantitative methodological approach was considered \nmost appropriate. Previous research which ha s collected data on the awareness of endometriosis, \nconducted in other countries, has made use of quantitative methods (Armour et al., 2021a; Parker, \n2006; Shadbolt et al., 2013; Zannoni et al., 2014), and therefore their use in the current study allowed \nfor direct comparisons to be made. \nQuantitative research deals with numbers, it enables a certain phenomenon to be quantified, such as \nhow many adolescent girls suffer from painful periods, or the percentage who know about \nendometriosis. Statistics such as these can be powerful, they make people listen and take note, and \nthe everyday use of statistics in society makes them easy f or any audience to understand (Miner-\nRubino and Jayaratne, 2007) . This is particularly important when research findings are used to  \npromote the need for social change; statistics can often influence public policy and legislation (Miner-\nRubino and Jayaratne, 2007). This is a pertinent issue in the field of adolescent endometriosis because \nresearchers and endometriosis organisations, such as Endometriosis UK, advocate for the need to \nimprove the education schoolgirls receive about menstrual wellbeing and endometriosis, with a hope \nthat this will help to decrease diagnostic waiting times. For improvements such as these to be made, \nit would require the attention and action of education providers and policy makers, and numbers may \nbe more engaging to such people (Hesse-Biber, 2010).  \nTraditionally, a quantitative approach involves the collection of a larger set of data than a qualitative \napproach. By obtaining the views of a large sample of adolescents, there is an increased likelihood \nthat it will result in change (Miner-Rubino and Jayaratne, 2007) . Qualitative research is useful for \nexploring an issue, such as the impact on adolescents because of their lack of awareness, but \nquantitative research can indicate how widespread the issue is. In addition, the use of quantitative  \nmethods allows the voices of a wider and more diverse sample of adolescents to be heard (Miner-\nRubino and Jayaratne, 2007) . This m ay also produce more objective data than if education \nrecommendations are based solely on research conducted with girls with endometriosis, who are \nlikely to express the need for more education, given the impact it has had on their lives. If girls without \nendometriosis are also unaware of it, and would like to learn about it, then this provides further \nevidence for the need to improve their education.  \n \n\n68 \n \n4.5 Philosophical Underpinnings of the Thesis \nThis thesis took a pragmatic approach to the study of endometriosis in adolescents (Morgan, 2007). A \nthorough review of past research highlighted the areas which required further exploration, and as \nsuch, the research question s were devised. Consideration was then given to the most appropriate \nmethodology to employ to answer these questions, and as described above, this required both a \nqualitative and a quantitative study.  \nThe use of two research methods by one researcher may contrast with previous traditions, in which \nsocial science researchers would often fall into one of two mutually exclusive communities; those \ndoing quantitative research and those doing qualitative research. Each of these work within their own \n‘paradigm’ or ‘worldview’, defined as “the consensual set of beliefs and practices that guide a field” \n(Morgan, 2007: 49) . Quantitative methods are ge nerally informed by positivism (Teddlie and \nTashakkori, 2009), and the belief that reality is concrete, and exists externally to the researcher. This \nis therefore objectively measurable using numerical data and analysis (Bryman, 2016). In contrast, \nqualitative researchers are guided by constructivism, or the belief that reality is ‘constructed’ rather \nthan set in stone. It is only knowable through the conceptual frameworks held by researchers, which \nare dependent on their own values and cultures, and is therefore not objectively measurable (Bishop, \n2015; Broom and Willis, 2007). \nWhile these two paradigms have opposing sets of underlying beliefs, they are similar with respect to \nhow they approach research, in terms of outlining their ontology, epistemology, and methodology, or \nwhat Morgan (2014) terms the ‘philosophy of knowledge’ approach. Ontology refers to beliefs about \nthe nature of reality (i. e. single versus multiple), epistemology is concerned with the nature of \nknowledge (how we know what we know), and methodology refers to the way that research questions \nare asked and answered (Teddlie and Tashakkori, 2009) . While each of these facets are equally \nweighted, the research process has a ‘top down’ orientation, whereby the higher order assumptions, \nabout the nature of reality, pose limits on what can be known, and the methodology that can be used \n(Morgan, 2007). \nIssues therefore arise when researchers choose to use both qualitative and quantitative methods, \nbecause according to this ‘philosophy of knowledge’ approach, the underlying ontologies that are \nassociated with each are in conflict (Morgan, 2007; Teddlie and Tashakkori, 2009). To overcome this \nissue, many researchers who use both methods take a pragmatic approach, rejecting this ontologically \ndriven ‘top down’ notion, and instead placing central importance on the research problem at hand \n(Morgan, 2007). \n\n69 \n \nPragmatists are concerned with the practical consequenc es of their research. If the use of two \nmethods of research can help understand real world issues, then this is more important than the \npotential issue of using research methods with apparent opposing ontological positions. In other \nwords, by taking a prag matic approach, we are choosing to take a value -orientated approach to \nresearch (Johnson and Onwuegbuzie, 2004) . The emphasis is placed on using the most appropriate \nmethods to an swer the research questions  (Teddlie and Tashakkori, 2009) . This was therefore the \napproach taken in this thesis, in which the literature review identified several important gaps relating \nto real world issues, which are best addressing using different methods of research. \nIn addition to the philosophical assumptions underpinning research, one can also employ a theoretical \nlens (Creswell, 2007) . The theoretical lens used in the current study was feminism. Feminist \nperspectives are not  constricted to any particular theoretical perspective (Hesse-Biber and Griffin, \n2015), and can therefore be used alongside a pragmatic approach (Stewart and Cole, 2007). The key \naim of feminist research is creating knowledge which centres on the lives of women (Hesse-Biber, \n2010), while also applying the knowledge of such women to advocate for social action and change \n(Brookes, 2007). \nFeminist values can be applied to the conduct of both qualitative and quantitative research. Feminism \nhas long been associated with qualitative methods, such as interviewing, as they allow the voices of \nwomen, who are often marginalised, to be heard (Hesse-Biber, 2007). As explained by Miner-Rubino \nand Jayaratne (2007), some feminists therefore believe that quantitative research reduces people’s \nexperience to numbers, and ignores their highly contextualised lives. However, several researchers \nhave acknowledged that quantitative research can be conducted from a feminist perspective (Hesse-\nBiber, 2010; Miner-Rubino and Jayaratne, 2007; Stewart and Cole, 2007). For example, for quantitative \nresearch to align to feminist values, the research questions must stem from an issue that is important \nto feminists, one that will help to improve the lives of women, and that will achieve social justice \n(Miner-Rubino and Jayaratne, 2007) . The quantita tive exploration of such issues can in fact be \nbeneficial. It is important to feminist researchers that suppressed voices are heard, and quantitative \nmethods can allow for a large number of women’s opinions to be collected. In addition, the results of \nquantitative feminist research are portrayed in statistics, which are accessible and effective for the \nnon-feminist public, who may be responsible for initiating social change (Miner-Rubino and Jayaratne, \n2007). \nThe use of a feminist lens in this study was deemed appropriate due to the highly gendered nature of \nendometriosis. Not only does it  concern problems with women’s reproductive hea lth, but it is often \ntreated in gendered ways as well (Denny and Weckesser, 2019) . Women are more likely to seek \n\n70 \n \ntreatment for pain than men, but are also more likely to receive inadequate care for it, with their \nverbal accounts of pain often  dismissed (Hoffmann and Tarzian, 2001) . This bias may stem from a \ngendered evaluation of pain; men are perceived to be more stoical when experien cing pain, and are \nthus believed if they actually do seek help, whereas women are perceived to report pain more often, \nand are not afraid to seem vulnerable for doing so, and therefore pain is ‘natural’ for women but \n‘abnormal’ for men (Bendelow and Williams, 1998) . Women’s reports of pain are not viewed  as \nseriously as men’s reports, they are more likely to have their pain discounted as having “emotional” \nunderpinnings, and they often receive less aggressive treatment for it (Hoffmann and Tarzian, 2001). \nThe propensity for healthcare practitioners to dismiss women’s pain has been highlighted in \nendometriosis research, particularly in reference to the diagnostic delays.  \nIt was therefore appropriat e to apply a feminist lens to both studies within this thesis. Utilising a \nfeminist lens in this thesis meant that feminist values were considered during the design, conduct, and \ninterpretation of the research. This included formulating research questions and study objectives that \nwere centred on women’s lives and promoting change, and engaging women in the research des ign \nprocess to ensure the methods were acceptable and relevant. Another aspect of conducting feminist \nresearch which was adhered to in this thesis was the process of reflexivity; in which the values and \nattitudes that were brought to the research process were outlined (Hesse-Biber, 2010).  \n \n4.6 Researcher Positionality \n \nA key aspect of the research process,  and one which enhances the qual ity and validity of research  \n(Braun and Clarke, 2013), is reflexivity. In order to be reflective, it is important to explain my identity, \npositionality, and professional background, which might all have influenced the research process, the \nquestions asked, and the data obtained (Hesse-Biber, 2007). In terms of my personal characteristics, I \nam a white woman, in her mid-30s, and a non -endometriosis sufferer. This denotes me as both an \n‘insider’, as I am a woman, who menstruates (and did so as a teenager), and an ‘outsider’, as I am no \nlonger a teenager, and I do not have endometriosis. The potential impact of my personal \ncharacteristics is discussed in further depth within Study 1.  \nMy professional background has been quite varied but is largely research based. I worked for many \nyears in mental health research,  working on research studies with adults with bipolar disorder, and \nyoung adults experiencing psychosis. Following this, I  completed a masters in Health Psychology, a \nprominent focus of which is the experience of illness. As part of my masters, I completed a qualitative \nresearch study  exploring the use of online support groups by women with endometriosis (see \n\n71 \n \nShoebotham and Coulson, 2016) . Having completed this work, I was  keen to look further into the \nexperience of endometriosis, and so was very eager to take on this PhD when the opportunity arose.  \nWhile I came to the thesis with a strong background in psychology, I do not now feel tied to any one \ndiscipline. The design of my studie s, and the questions asked, were influenced by both my own \nresearch background, and by reviewing previous research in the experience of endometriosis (which \nhas been conducted by nurses, sociologists, and psychologists, to name a few ). I was also influenced \nto some extent by my supervisors , who have backgrounds in  health psychology , sociology,  and \nanthropology.  \n \n4.7 Summary \nHaving identified the gaps in the literature, a pragmatic approach, with a feminist lens, was taken to \nthe further study of endometriosis in adolescents. This required a qualitative study to explore the \nexperiences of adolescents with endometriosis, and a quantitative study to identify the awareness of \nendometriosis amongst adolescents, and their experiences of menstruation. These studies were \ndesigned and conducted separately, which are outlined in Parts 2 and 3 of this thesis respectively. Part \n4 reflects on how some of the findings from these studies can be jointly interpreted, and outlines \nfuture recommendations that have arisen from the research. \n \n  \n\n72 \n \nThesis Part 2: Qualitative Study \n  \n\n73 \n \nChapter 5. Study 1: Methods  \n5.1 Introduction \nThis chapter describes the methods employed within the qualitative study, including their rational e \nand justification. It begins with an overview of the aims of the research, followed by a description of \nthe exact methods used. The main aim of  this research was to explore the experiences of \nendometriosis in adolescents, which was addressed by conducting a qualitative study using narrative \nsemi-structured interviews. \n \n5.2 Research Questions and Aims \nThis research study was guided by the overarching research question: ‘What are adolescents’ \nexperiences of endometriosis?’  The key aim of this study was to improve knowledge and \nunderstanding in this previously understudied research area. This would be achieved by building upon \nthe current evidence surrou nding adolescents’ experiences of endometriosis, and by exploring key \nareas of their experience which had received little attention in previous research. These aims were \naddressed through a larger set of research questions: \n1. What is the lived experience of adolescents who have a diagnosis of endometriosis? \n2. How do adolescents obtain their diagnosis of endometriosis? \n3. What sources of support do adolescents with endometriosis draw upon and/or need? \n4. Are there aspects of the adolescent experience of endometriosis that differ to those of adults, \nor that differ to those of AWCI? \nThese research questions were explored using a qualitative approach, the rationale for which was \ndiscussed in the previous chapter (Chapter 4). \n \n5.3 Qualitative Approach \n5.3.1 Semi-structured Narrative Interviews \nThe qualitative approach used in this study was semi-structured narrative interviews. While interviews \nand focus groups are both used commonly in health research, owing to their ability for an in -depth \nexploration of participants’ experiences of a phenomenon (Gill et al., 2008), interviews provide a rich \nunderstanding of an individual’s experience rather than the collective experience gathered by focus \ngroups (Holloway and Galvin, 2017). In addition, interviews are more appropriate when little is already \n\n74 \n \nknown on the topic of interest (Gill et al., 2008; Gray, 2004). They allow participants to use their own \nwords and language when describing complex issues, such as their views and experiences. They are  \ntherefore a suitable method for research which aims to explore the voices and experiences of those \nwho have been previously ignored or supressed in past research (Byrne, 2012). Interviews are also an \nappropriate method when researching sensitive topics, which participants might be hesitant to discuss \nin group settings (Gill et al., 2008). \nInterviews were therefore the most suitable qualitative method for this study, which aimed to obtain \nindividual accounts of experience, from a sample who had received little previous attention. The \ninterview method chosen was narrative interviewing, which is an effective method when the research \nquestion is broad, such as seeking to understand the complete experience of living with endometriosis \nas an adolescent, rather than one which focuses on a specific aspect of it (Anderson and Kirkpatrick, \n2016). In narrative interviews, people are encouraged to tell their story of their experience, which is a \nvaluable research tool because story telling occurs frequently and naturally in people’s lives, and it is \na way they make sense of their experience (Anderson and Kirkpatrick, 2016) . Narratives are \nadditionally useful when researching chronic illness experience, because they enable people to make \nsense of the disruptive events which may occur in their lives (Riessman, 1990). A story is usually told \nalong a timeline, from beginning, through middle, to end, and therefore gathers a coherent account \nof the entirety of one’s experience. \nThe narrative interview method was combined with semi -structured interview techniques, including \nthe use of a topic guide. In a typical narrative interview, the interviewer is required to have a relatively \nflexible agenda, perhaps with one opening question, following which the participants take control of \nthe direction and content of the interview (Anderson and Kirkpatrick, 2016) . While this method \nenables participants to tell their story, and raise issues which are important to them, it may fail to \naddress topics of interest to the researcher, which have not been explored previously (Anderson and \nKirkpatrick, 2016). In addition, the narrative approach may be confusing if more guidance is sought by \nparticipants on what to discuss. A topic guide, which consists of key questions and prompts, can help \nto outline the areas of interest (Gill et al., 2008). Their use still enables a flexible interview approach; \nthe sequencing of questions, and the topics that are covered might not be the same for all participants, \nas it will depend on the interview process and participants’ responses. The guide simply ensures that \nthe data collected from each participant covers the topics of interest (Holloway and Galvin, 2017). This \nflexible approach also allows for the interview to diverge along unanticipated pathways, and to \nuncover issues which had not been previously considered (Gray, 2004). \n\n75 \n \nThe methods of data collection that were used in this research were face -to-face and telephone \ninterviews. The use of narrative semi-structured interviews necessitated a method which allowed for \nboth verbal communication and synchronicity, and therefore methods such as email and web chat, in \nwhich interviewees type their response, were discarded. Face-to-face interviews have the additional \nbenefit of the visual element, in which non-verbal cues, such as facial expressions, gestures and body \nlanguage, can be viewed and interpreted by the interviewer (Lo Iacono et al., 2016). These non-verbal \nforms of communication can add to the richness of qualitative data (Hesse-Biber and Griffin, 2013) . \nWhile these can also be obtained by the use of online video interviews (Lo Iacono et al., 2016), some \nof these cues might be missed, as poor connection, dropped calls and broken speech/images might all \npose a problem. This could affect rapport, and might therefore be particularly difficult when discussing \nsensitive topics - the addition of a video m ay further increase nerves (Seitz, 2016) . Face to face \ninterviews were therefore preferred for the current research, in which sensitive topics would be \ndiscussed.  \nHowever, the use of face -to-face interviews alone posed restrictions on recruiting and interviewing \nthose from a wide geographical area, and therefore telephone interviews were also used. This method \nnot only ensures for a more diverse sample, which is advantageous when recruiting historically \nmarginalised communities underrepresented in research, but is also time and cost efficient (Holloway \nand Galvin, 2017) . While telephone interviews do not have the benefits associated with the visual \nelement of other interview methods, their use is associated with a level of anonymity, which can help \nwhen relaying experiences of a sensitive nature (Drabble et al., 2016) . Furthermore, there are a \nnumber of strategies that an interviewer can use, such as active listening, reciprocity, and informal \n‘small talk’, which can build a rapport, and produce an effective interview (Drabble et al., 2016).  \nIn summary, this research employed individual interviews with participants, to explore their \nexperiences of living with endometriosis. The approach taken was narrative interviewing, however \nthis was combined with semi-structured interview techniques, to prompt participants if needed, and \nto explore topics of further interest. Both face-to-face and telephone interviews were used, the choice \nof which was dictated by both geography and participant’s’ personal preferences. \n \n5.3.2 Timelines \nIn addition to the semi-structured narrative interview, a drawing technique was employed to act as a \nresearch tool, for which participants were asked to create a timeline, or visual representation of their \njourney with endometriosis. Timelines are a comp lementary research technique to narrative \ninterviewing, the aim of which is to construct the participant’s own story about their experiences \n\n76 \n \n(Woolhouse, 2017). The telling of a story is usually linear, told in chronological order, and therefore a \ntimeline can help to tell this story (Adriansen, 2012). Timelines, or similar drawing methods, are often \nused in cross cultural research, or research with children, where participants may struggle to verbally \narticulate their experiences (Bagnoli, 2009). However, they are more widely being used with other \npopulations, and in research about chronic illness, as their use as a research tool can have many \nbenefits (Guillemin, 2004). \nIn narrative interviewing, participants are invited to recall and recount their experiences, some of \nwhich may have happened many years ago, which can be demanding (Woolhouse, 2017). The drawing \nof a timeline can help to stimulate participants’ memories, allowing for the recall of experiences that \nmay otherwise be forgotten, or temporally misplaced (Bagnoli, 2009; Jackson, 2013; Woolhouse, \n2017). Furthermore, by asking participants to produce a timeline, they are given an element of control \nover the research process, and the content they choose to share, which may be viewed as an \nempowering experience (Jackson, 2013).  \nIn addition to the benefits for research participants, the use of timelines can also aid the interviewer \nand the research process. They can be a useful way to open an interview, or to ‘break the ice’, and \nthey may help to overcome silences throughout the interview (Bagnoli, 2009). By focusing on the \nprocess of drawing, participants may find it easier to talk about sensitive issues, as they do not need \nto maintain eye contact with the interviewer (Adriansen, 2012). A timeline provides a chronological \noverview of a participant’s story, which both researcher and participant can see, and which can \ntherefore guide the researcher through the subsequent narrative interview (Adriansen, 2012; Jackson, \n2013). \nFinally, the use of timelines can add to the depth, or the richness of the data collected. The visual focus \nof timelines allows participants to go beyond a purely verbal way of thinking, which most qualitative \ninterviews rely on, and can capture the wider dimensions of individual experience, which may \notherwise be missed (Bagnoli, 2009). They can expand our understanding of illness by enabling a more \ncomplex exploration of the diverse ways that illness is experienced (Guillemin, 2004). A timeline can \nalso offer a more thorough understanding of how the events experienced during ones story fit into \nthe wider contexts of their lives (Adriansen, 2012). \n \n5.4 Sample Inclusion and Exclusion Criteria \nThe sample for this research consisted of adolescents and young women (AYW) with a diagnosis of \nendometriosis, aged 15 to 24 years old, and who had experienced symptom onset between age 10 \n\n77 \n \nand 24 years. The rationale for this age range is multifaceted, it included; the identification of common \ndefinitions of adolescence ; exploring the age ranges used in similar health research , and; \nconversations with experts in the field.  \nAs discussed in Section 2.3, adolescence has been defined as those aged 10-19 years (UNICEF, 2011) \nsince the middle of the 20th century, however the course of adolescent growth and the timings of role \ntransitions associated with  adolescence have changed significantly over that time  (Sawyer et al., \n2018). Therefore, to align with contemporary patterns of adolescent development, a more inclusive \ndefinition, now widely adopted by many researchers, is those aged 10 to 24 years old (Hagell et al., \n2013; James, 2017; Sawyer et al., 2018). In health research, using the upper age limit of 24 also allows \nfor the sometimes lengthy transition into both adulthood and adult services (Hagell et al., 2013). \nWith these definitions in mind, various experts were approached to discuss the proposed age range \nfor this research. These included an endometriosis specialist clinician, endometriosis researchers, and \ntrustees/the CEO of Endometriosis UK. All agreed that while the symptoms of endometriosis often \nbegin at a young age, it may be challenging  obtaining a big enough sample if the range of 10 to 19 \nyears was used , particularly given the often -lengthy diagnostic delay. Therefore, recruitment was \naimed at those whose symptoms began before the age of 19, but with an extended upper age limit of \n24. This would allow for the inclusion of those whose symptoms of endometriosis  began during \nadolescence, even if it was not diagnosed during that time. The upper age limit of 24 also ensured that \nthe data collected reflect ed the true adolescent experience, from those who were adolescents, or \nfrom young adults who were still transitioning into adulthood,  whose adolescence is the subject of \nrecent recall. \nThe lower age limit for participation in this study was 15 years. Although there is evidence to suggest \nthat symptoms of endometriosis might start at a very young age (Laufer, 2000), it is very rare for \nadolescents to obtain a diagnosis between the ages of 10-15 years (Haas et al., 2012). Those aged 14 \nand under may also be more embarrassed than their older peers when talking about matters \nconcerning menstruation (Ackard and Neumark-Sztainer, 2001). \nFinally, to be eligible for the study, a diagnosis of endometriosis needed to have been confirmed via \nlaparoscopy (self-report). This ensured that the views and experiences collected in this research were \nthose of people who have endometriosis, rather than a similarly presenting condition. \nIn summary therefore, participants had to meet all the following inclusion criteria: \n• Aged 15 to 24 years. \n• Symptom onset between the ages of 10 and 19 years.  \n\n78 \n \n• Confirmed self-reported diagnosis of endometriosis (laparoscopically confirmed) \n• English speaking \n \n5.5 Recruitment \nParticipants for this study were based in the United Kingdom, and were recruited through social media \nand Endometriosis UK, via both their support groups and social media platforms. The use of support \norganisations to recruit participants in health research is well established, and has been widely used \nin previous endometriosis research (e.g. Cox et al., 2003a; Gilmour et al., 2008; Seear, 2009b) . Their \nuse as a recruitment platform is particularly effective when the study sample stems from a highly \ndefined group, and they have the additional benefit of being low resource -intensive (Patrick et al., \n1998). In line with technological advances, the support provided by organisations, such as \nEndometriosis UK, is not confined to traditional face-to-face settings, and is also readily accessible on \nthe internet. Obtaining support online is  popular due to  its flexibility, allowing those who’s time or \nlocational restraints prevent them from attending face -to-face groups (Potts, 2005). Online support \ngroups are accessed by those with endometriosis, who have described many therapeutic benefits of \nsuch use , including the ability  to find others with the same cond ition, and to  access support and \ninformation (Shoebotham and Coulson, 2016). \nThrough the development of social media, such online support is now also available on platforms such \nas Facebook, Twitter, and Instagram. Social media platforms are those described to “provide space for \nsocial interaction, communication, collaboration, and community formation” (Zhao et al., 2013: 290). \nThese sites are particularly popular amongst teenagers, with recent estimates suggesting that 96% of \n16 to 24 year olds in the UK are social media users (Office for National Statistics, 2017) . Given the \nwidespread use of social media, it is often utilised as a research recruitment tool. Social media can \nenhance the recruitment of historically marginalis ed/underrepresented communities (King et a l., \n2014), and is also cost and time effective (Fenner et al., 2012). It has successfully been used in engaging \nteenagers and young women in research (Fenner et al., 2012). \nTherefore, this research used support groups (online and physical) and social media sites as \nrecruitment settings. The support organisation Endometriosis UK was contacted to se ek their \npermission to recruit through their support groups and social media accounts. After providing their \npermission (see Appendix 13), they shared a research advert at local face-to-face support groups and \non their Facebook page. The research advert wa s also shared on the researcher’s own social media \npages (Facebook, Twitter, and Instagram), using #endometriosis, to ensure it was noticed by the target \n\n79 \n \naudience. For these research adverts, two research flyers  were produced (see Appendix 3) which \nprovided a brief overview of the study and instructed those who were interest ed in the research to \ncontact the researcher directly.  \nThese advertisements, and particularly those shared by Endometriosis UK, received a large amount of \nattention, and 104 respondents made contact to express their interest; 92 who had heard about the \nresearch from Endometriosis UK’s Facebook post, 4 from a local Endometriosis UK support group, and \n8 from my own Twitter post.  All respondents were sent a standard reply, thanking them for their \ninterest and informing them that due to the large amount of interest, it may take some time to get \nback to them. If the y hadn’t already provided it, they were also asked for their age, and their \ngeographical location. There were 7  respondents who immediately did not meet the study criteria, \nbecause they did not meet age requirements (2), or lived outside the UK (5), and these were each sent \nan email thanking them for volunteering but  informing them that they would not be able to \nparticipate. \nDue to the qualitative nature of this research, it would not  have been possible to interview all those \nthat responded to the advert , and therefore a sampling procedure was adopted . Respondents were \ninitially prioritised based on age, as previous research had little inclusion of the experiences of \nteenagers, and so all those aged 19 and under were approached first. This resulted in 11 pot ential \nparticipants. Next, sampling focussed on attempting to include the views of people from varied ethnic \nbackgrounds. In the absence of  any direct information on respondents’ race or ethnicit ies, \ndemographic data was gleaned from their names, where possible (Tzioumis, 2018). However there did \nnot appear to be  much indication of diversity amongst the respondents, with the exception of one \nrespondent, who did not have a diagnosis  (and thus did not meet inclusion criteria. In an attempt to \ntarget those from more ethnically diverse backgrounds, contact was made with a local organisation \nwho aim to ensure that those from ethnic and racial minoritized communities have their voices heard, \nwith one of their key focuses being on menstrual and reproductive health. However, they were unable \nto find any potential participants for the study.  \nFollowing these attempts to recruit a younger and ethnically diverse sample, selection was guided by \nthe view that it was  beneficial to interview people with very  varied symptoms and experiences. \nHowever, to avoid raising the hopes of respondents in case they were not interviewed, they were not \ncontacted to ask for more information about their experiences, and it was instead gleaned from their \ninitial emails, many of which included descriptions of their symptoms, treatments, and diagnosis.  \nThose selected as potential participants were asked via email to provide their phone number, and a \nsuitable day and time to phone them, to  complete the initial telephone screen. They were then \n\n80 \n \ncontacted according to the information they provided, and all were given the same verbal information \nabout the research (see Appendix 4). Once their willingness to participate was confirmed, they were \nasked a few short screening questions to ensure they met the eligibility criteria, including their current \nage, age at symptom onset, and whether they had a confirmed diagnosis. If they met inclusion criteria, \nthey were recruited into the study and a  research interview was arranged. The final sample size (24) \nwas determined as data collection progressed, when a point of data saturation was achieved. \n \n5.6 Measures \n5.6.1 Interview Guide \nAn interview topic guide was developed specifically for use in this study, which was derived from a \nthorough review of the literature. To assess the relevance of the content of the interview guide, it was \nshown to women belonging to a local endometriosis support group. Following their consultation, the \ninterview guide was amended, including the addition of key questions and minor prompts. Following \nthis, it remained a developmental document, which was edited after the conducting the first few \ninterviews to include particular issues which had emerged (Holloway and Galvin, 2017). The final topic \nguide, used for most interviews, is available for reference in Appendix 5.  \nThe topic guide opened with a set of structured questions, to gather demographic data about \nparticipants, and informatio n about their endometriosis, including their age at symptom onset, \nnumber, and type of surgeries etc. Questions such as these help to build a rapport with participants, \nand put them at ease ready for the more unstructured questions (Gill et al., 2008; Holloway and Galvin, \n2017). The narrative part of the interview guide began with an open question: “Can you tell me about \nwhat happened when you first started to experience symptoms of endometriosis?” This was followed \nwith several prompts, and follow up questions, to address key areas of exploration. To yield as much \ninformation from participants as possible, and to allow them to express their own views and \nexperiences, questions were open-ended and neutral. \nSome participants were able to provide a narrative of their entire story of living with endometriosis \nfollowing the opening question. Such participants were then questioned according to the interview \nguide if more clarity was sought, or if they had not addressed key areas of further exploration. \nHowever, many participants needed more direction and prompting, which was apparent from the \noutset of their interview, and so they were interviewed using a more semi-structured approach.  \n \n\n81 \n \n5.6.2 Timelines \nFor the timelines task,  participants were given (either verbally or written) a standard set of  \ninstructions, which can be seen in Appendix 6. As suggested by Bagnoli (2009), the instructions for the \ntimeline were kept as broad as possible, and participants were asked to “draw a visual representation \nof your journey with endometriosis, something like a timeline, river or path”, rather than explicitly \nstating they had to do a timeline. It was important to ensure that participants structured the drawing \nin their own way, and therefore took ownership of it. Some participants did ask for a little more \nguidance, and they were told that it was really up to them how to draw it, as long as it captured their \njourney from when their symptoms began up until the present day, and included any significant events \nalong the way. They were also reassured that their drawing skills were not under any scrutiny, and \nthat it was simply a way to get an overview of their journey (Jackson, 2013). \n \n5.7 Ethical Considerations \nA foundational code of ethics is the Declaration of Helsinki, first established by th e World Medical \nAssociation in 1964 (World Medical Association, 2013; most recent update) . This Declaration wa s \ndeveloped to provide a set of ethical principles, which safeguard human subjects who are involved in \nmedical research. A key feature of the Declaration is to always ensure that the health, well-being, and \nrights of those involved in research are protecte d, and that this takes precedence over scientific \ninterest. This principle is common across the codes of ethics adopted by different disciplines, including \nthat of the British Psychological Society (BPS, 2018) which was followed in this research.  \nThe ‘Code of Ethics and Cond uct’ of the BPS (2018) sets out four ethical principles, with which \npsychologists must aim to adhere to. These principles are respect, competence, responsibility, and \nintegrity. Complementary to this document is the BPS ‘Code of Human Research Ethics’ (2014), which \nspecifically outlines the ethical conduct involved in research with human subjects. The principles in \nthis latter document correspond to those in the ‘Code of Ethics and Conduct’. These principles are \noutlined below, as well as the methods taken to abide by them in this research: \n1) Respect for the autonomy, privacy and dignity of individuals and communities.  This was \nachieved by ensuring participants made their own fully informed decision to take part in the \nresearch, and in doing so were provided wi th adequate information about the research and \ntheir rights as a participant such as confidentiality, consent, and withdrawal.  \n\n82 \n \n2) Scientific integrity. This was ensured through the process of obtaining ethical approval, in \nwhich the design and rationale for the research were independently scrutinised and \nconfirmed. \n3) Social responsibility. Key stakeholders (including Endometriosis UK) we contacted for both \nguidance and permission of access, which ensured this research created knowledge that was \nbeneficial to so ciety, and that social structures would be respected through the conduct of \nthe research.  \n4) Maximising benefit and minimising harm.  While generating such knowledge that would be \nof benefit, it was of upmost importance to safeguard the well-being of research participants. \nFurther details about how the ethical principles of both BPS codes of ethics were considered and \nactioned in this research are subsequently outlined. As indicated by the guidelines, ethical principles \nwere considered from the initiation of the study, through to the writing up of study findings. \n \n5.7.1 Obtaining Ethical Approval to Conduct the Research \nPrior to commencing any research activities, approval was sought, and granted by the University Ethics \ncommittee (FAEC) at Birmingham City University (see Appendix 7).  \n \n5.7.2 Consent, Confidentiality, and Withdrawal \nParticipants were aged 15-24 years at the time of study participation. Those who were aged at least \n16 years old were able to give their own permission to consent to research. Those who were under 16 \nneeded additional consent from a parent or guardian before they could take part  in the research, as \nwell as providing their own written consent. Potential participants, and parents/guardians if under 16, \nwere presented with an information sheet which detailed the research in full, including the research \nmethods and their right to withdraw (see Appendices 8 & 9). Prior to taking consent, participants were \nasked to confirm they had read and understood the information sheet, and were given the opportunity \nto ask any questions they wanted to about the research. Participants then provided their fully \ninformed consent, by completing a consent form, which listed  several statements to which they had \nto initial, such as their right to withdraw and their confidentiality rights , before signing and dating at \nthe bottom (see Appendix 10).  Those un der 16 would also need their parent/guardian to sign a \nconsent form (see Appendix 11).  \n\n83 \n \nTo maintain participant confidentiality, participants were given an ID number upon recruitment into \nthe study, and all their data was stored according to that number. Therefore, neither their name, nor \nany other identifiable information, was associated with any of their research data.  Furthermore, no \nidentifiable information is reported in the results and all participants were given a pseudonym. \nPseudonyms were chosen by the researcher at random, and none of the names chosen were the real \nnames of any participants. Participants could also opt out of giving consent for their direct quotes to \nbe used in the research report , publications, or presentations, however no participants chose to do \nthis.  \nData was stored in accordance with the Data Protection Act 1998 , where  by physical data was \nencrypted and stored in a locked cabinet at Birmingham City University, and electronic data was stored \nunder password protection on a secure server. \n \n5.7.3 Protecting the Well-being of Research Participants \nDuring study design, consideratio n was given to the  potential for distress to arise because of  the \nexploration into participants’ experiences of endometriosis , particularly  if relaying very personal \nstories. Procedures were put into place should this occur, including showing sensitivity towards the \nparticipant, giv ing them the option of having a break, stopping the interview, and returning to it \nanother day, or stopping the interview and not returning to it . An appropriate follow up procedure \nwas also put in place to ensure there was no on -going distress after the interview, whereby \nparticipants were given a debriefing information and support sheet (see Appendix 12). This adhered \nto the guidelines for research with children and young people as proposed by the National Children’s \nBureau (Shaw et al., 2011). If a participant were to have shown signs of very marked distress during \ninterview, they would have been followed up by a phone call within 4 8 hours, to ensure that there \nwas no ongoing distress and that they had made contact with the appropriate additional supports. \nDuring the conduct of the interviews, a small number of participants showed minor signs of emotion \nwhile relaying their experiences, and they were asked if they would like to take a break, or move on \nto a different topic. They each expressed a desire to continu e, and said they were eager to tell their \nstory. There were no signs of marked distress shown by any participants, either during or after the \ninterview, and therefore none of them needed to be followed up after the interview process.  \nA safeguarding procedure was also put into place in the design of this study, which participants were \ninformed about in the information sheet . No safeguarding issues were raised during the conduct of \nthe study. \n\n84 \n \n5.7.4 Respecting the Potential Power Imbalance Between Researcher and Participants \nIt was considered that there may have been scope for a potential power imbalance to occur, between \nthe researcher and the participant, due to factors such as age and status. Power relations were \nconsidered at each stage of the research process, including the design, recruitment, data collection, \nand interpretation stages (Karnieli-Miller et al., 2009) . Attempts were made to minimise this \nimbalance, such as building a rapport,  avoiding the use of leading questions during data collection, \nand giving participants the opportunity to ensure their views were interpreted correctly. \n \n5.8 Data Collection \nPotential participants were initially contacted by telephone to relay study information sheet and \nconfirm eligibility criteria. Following this, an interview was arranged at a date and time suitable for \nthe participant. These interviews were conducted eithe r face-to-face, if geographically possible, or \nover the telephone. Data collection procedures differed slightly depending on whether a face-to-face \nor telephone interview was conducted. \nIn total, 13 telephone interviews were conducted. Participants completing a telephone interview were \nsent the information sheet and consent form either by post or by email, and were asked to complete \nand return the consent form prior to the arranged date of interview. During the initial phone \nconversation, participants were told about the timeline drawing exercise, and were asked if they were \nwilling to complete this, to which all agreed. They were given both verbal and written instructions for \nthe timeline (see Appendix 6), and were asked to send a scan or photo of their completed timeline via \nemail prior to the arranged interview. All but one of the participants completed the timeline exercise. \nOn the day of interview, all participants were called at the arranged interview time on the numbers \nthey provided, and it was confirmed that they were in a private space, which in all cases was a room \nwithin their home. Then the rest of the interview proceeded (detailed below). \nThe remainder of the interviews (11) were conducted face -to-face, 9 of which were done at \nparticipants’ houses, and 2 on the university campus. These were conducted in a private space, in a \nprivate meeting room if on campus, or a private room within a participant’s house. During two home \nvisits, participants had their mum present in the room, and so it was confir med prior to starting the \ninterview that the participant was willing to discuss the potentially sensitive topics in front of them, \nto which both agreed. Their mothers were informed that the interview would be audio recorded, and \nanything they said would be  picked up by the recorder, however it would not be used in the \nsubsequent analysis (or any publications resulting from such). At the start of the interview, \n\n85 \n \nparticipants were asked to complete the consent form.  Participants were then told about the timeline \ndrawing exercise, and all participants agreed to complete this. For this exercise, they were provided \nwith a blank piece of A3 paper and some pens. They were given the same verbal instructions as those \nwho completed timelines for phone interviews, and they were then given  approximately 10-15 \nminutes to draw their timeline. Some chose to talk their way through their timeline, in which case it \nwas audio recorded (with consent), and some completed it in silence.  \nOnce consent was obtained and the timelines  were complete, both face -to-face and telephone \ninterviews then followed the same procedure. Participants were asked to provide their demographic \nand background information, and were then told about the structure of the remainder of the \ninterview. They wer e told that we would be talking through their timeline, and discussing their \nexperiences of living with endometriosis, and that the audio recorder would now be turned on (unless \nalready on due to talking through timeline). They were also informed that they did not have to answer \nany questions they felt uncomfortable with, and that they could take a break if needed. \nUsing their timelines and the interview topic guide (see Appendix 5), participants were then asked to \ntell their story of living with endometriosis. Interviews lasted between 50 and 90 minutes. There was \nlittle difference in the average length of time between face -to-face interviews (66.2 minutes) and \ntelephone interviews (69.2 minutes). Most participants did not require a break, although one needed \nto abruptly stop the interview due to unforeseen circumstances, and so it was completed at a later \ndate. At the end of the interview, it was confirmed that the participants had nothing further to add, \nand any questions they had were answered. They were then thanked for their time and were given \n(or sent by email) an information sheet detailing sources of further support (see Appendix 12). All \nparticipants consented to being contacted again, should the need arise.  The process of data analysis \nbegan after the completion of the data collection phase, and therefore did not influence the data \ncollected. \n \n5.9 Data Analysis \nThe data collected in this study included the demographic information, timelines, and audio recorded \ninterview files for each participant. The demographic information was collated on an excel file, to \nenable an overview of the participant characteristics of the sample. The audio files were transcribed \nto produce text documents, which allowed for the subsequent data analysis. All were transcribed by \nthe PhD candidate. The method adopted was intelligent verbatim transcription, and the written text \nwas annotated in order to maintain the emotional overtones of the spoken text (i.e. using bold to \n\n86 \n \nshow speech emphasis). Other nuances of the spoken text were also recorded, including pauses (p) \nand “break-offs” (–); when one interrupts self or stops idea mid -stream (as described by Riessman, \n2008). The main goal was to ensure consistency across transcripts, and that each transcript remained \nas true to the original conversation as possible (Bazeley and Jackson, 2013; Braun and Clarke, 2006). \nFinalised transcripts were uploaded onto QSR NVivo version 11; which facilitated the qualitative \nanalysis process. \n \n5.9.1 Choice of Analysis Method \nThe method of analysis used for the  interview transcripts  was thematic an alysis (TA), using the \nframework outlined by Braun and Clarke (2006) . TA is considered to be “a method for identifying, \nanalysing, and reporting patterns (themes) within data.” (Braun and Clarke, 2006: 79). It was therefore \nappropriate for use in this research study, which aimed to describe the patterns, or themes, which \noccurred across AYWs experiences  of endometriosis. It is also an approach which can be used with \nnarrative interview data (Anderson and Kirkpatrick, 2016) .  However, the “thematising” of data \n(Holloway and Todres, 2003: 347) is a strategy used in much qualitative analysis, and as such TA has \nbeen criticised as being merely an analysis tool, and not a method of analysis  in its own right. Braun \nand Clarke (2006)  refute this, stating that what is missing is clarity around the method, and they \ntherefore propose a methodological framework for conducting thematic analysis.  \nAccording to Braun and Clarke (2006) , TA differs from many other analytic methods that aim to \ndescribe patterns across a dataset. Unlike methods such as interpretative phenomenological analysis \n(IPA) and grounded theory, it is a flexible method of analysis, which is not tied to any particular theory \nor epistemology. IPA, for example, is bounded to a phenomenological epistemology (Smith, 1996), \nand has a dual focus, aiming to describe the meaning of experience at both a general and individual \nlevel (Holloway and Todres, 2003). Furthermore, IPA is not just an analysis method, but it provides a \nframework for conducting an entire research project (Smith and Osborn, 2004) . In a similar vein, \ngrounded theory can be viewed as a methodology and not simply a method of analysis, however it is \nalso directed towards the development of a plausible and effective theory of the phenomena under \nstudy, which is grounded in the data (Holloway and Todres, 2003). Grounded theory analysis therefore \nis more suitable to research questions which focus on social and psychological processes, and noting \nchanges or influencing factors on the area of interest (Holloway and Todres, 2003).  \nTA contrasts to IPA and grounded theory (among other methods) because it has no fixed theoretical \nunderpinning, and therefore can be used within numerous theoretical frameworks, in many different \n\n87 \n \nways (Braun and Clarke, 2006). The theoretical freedom offered by TA therefore makes it appropriate \nfor use in the current study. However, for the analysis to be methodologically sound, it is important \nthat epistemological assumptions behind the analysis ar e made explicitly clear. TA can be; \nessentialist/realist, reporting the experiences, meaning and reality of participants, or; constructionist, \nexamining how events, experiences meanings etc. are affected by the discourses operating within \none’s socio -cultural context (Braun and Clarke, 2006) . The aim of this study was to report on the \nexperiences and reality of AYW with endometriosis, and therefore a realist approach to TA was taken. \nFurthermore, Braun and Clarke (2006)  state the importance of making explicit the decisions about \nhow themes were identified; and in this research, an inductive semantic approach was taken. An \ninductive, or data driven, approach allows for participants’ experiences to emerge from the data, and \nis not restricted by theoretical constraints or a researcher’s preconceptions (Braun and Clarke, 2006).  \nAs there was a lack of existing literature on adolescent experiences of endometriosis, an analysis \napproach which was exploratory and inductive was therefore needed. Finally, the semantic approach \nensures that the identification of themes is based on the explicit or surface meanings of the data, and \ndoes not aim to go beyond what participants have said, to seek their underlying meanings (Braun and \nClarke, 2006). Once patterns have been identified in the data, they are then interpreted in an attempt \nto understand their significance and implications. \n \n5.9.2 Analysis Process \nThe six phase framework for TA proposed by Braun and Clarke (2 006) was used. The fi rst phase \ninvolved familiarisation with the data, through a process of ‘immersion’. By the time the data analysis \ncommenced (after completing the data collection phase), there was already a good level of familiarity \nwith the data, which followed from having conducted and then transcribed each interview. \nTranscription occurred shortly after each interview , which allowed for the recognition that data \nsaturation had been reached. It was a lengthy process; each recording was often listened to 3 times \nin its entirety to produce the final tr anscript. However, this process  was seen as a key phase in the \ndata analysis (Bird, 2005), it was an integral way to obtain data familiarisation, and to form initial  \nanalytical idea s (Bazeley and Jackson, 2013) . Once all the transcripts were produced, they were \nuploaded to NVivo, and the formal process of data analysis  was commenced. This began  with the \nreading and re-reading of all transcripts, and noting down initial ideas and patterns within the data.   \nOnce the process of data  familiarisation was complete , phase  two of the analysis process began;  \n‘generating initial codes’. This involved the systematic coding of the entire data set, looking for \n\n88 \n \ninteresting features in the data, and patterns across the data set. In selecting which interview to code \nfirst, a decision was made to choose one which was lengthy, and which was remembered to be rich in \ndetail. A second interview to code was then selected because it contrasted in several ways from the \nfirst, such as symptoms experienced, time to diagnosis, etc. This process of selecting contrasting \ninterviews continued, and enabled for the generation of the majority of codes, and a wide variety of \ncodes, while coding the initial few transcripts (Bazeley and Jackson, 2013). Coding was extensive; using \nan inductive approach  meant that  the contents of the entire data set were coded , ensuring that \nnothing was left uncoded in case it was relevant/interesting later. Many data extracts were assigned \nto multiple codes (Braun and Clarke, 2006). \nAt the completion of phase two, a long and exhaustive list of codes had been developed, and phase \nthree, ‘searching for themes’, was initiated. Themes were considered as: “…an abstract entity that \nbrings meaning and identity to a recurrent experience and its variant manifestations. As such, a theme \ncaptures and unifies the nature or basis of the experience into a meaningful whole.” (DeSantis and \nUgarriza, 2000: 362). To develop such themes, the list of codes was sorted and collated to produce a \nnumber of potential themes. The relationship between codes, subthemes, and themes were \nconsidered, and codes which did not obviously fit into themes were placed in to a ‘miscellaneous’ \ntheme. At this stage, the size of the themes was not considered to be important, but rather whether \nthey were of relevance in answering the research question (Braun and Clarke, 2006).  \nOnce a set of potential themes had been devised, they were reviewed in phase four of the analysis. \nThis involved  the examination of the coded data extracts, to ensure that they formed a coherent \npattern. At this stage, refinements were made to both the themes and subthemes, and coded extracts \nwhich were an ill-fit for their theme were either moved or discarded. The number of themes reduced \nsignificantly at this stage of the analysis, as themes were collapsed together to provide a more concise \nrepresentation of their content. For example, the themes ‘living with endometriosis’ and ‘impact on \nteenage life’ were collaps ed to form ‘living with endometriosis as a teenager’. It was important to \nensure that there was meaningful correspondence of data within a theme, but that there was a clear \ndifference of data between themes (Braun and Clarke, 2006) . In addition, this phase of analysis \nensured that the themes accurately represented the entire data set. \nAfter the themes had been reviewed and refined, phase five of the analysis began; ‘defining and \nnaming themes’. This phase involved providing a definition of each theme and subtheme, as well as a \n‘concise’ and ‘punchy’ name which captures the ‘essence’ of what the theme is about (Braun and \nClarke, 2006). To do this, the original data was consulted to try to identify names which reflected the \n\n89 \n \nlanguage used by participants. Aligning with the feminist lens, this also ensured the acknowledgement \nthat the participants were the experts of their particular experiences. \nThe final phase in the analysis process was ‘producing the research report’, which aimed to provide a \nconcise, coherent, and interesting account of the data (Braun and Clarke, 2006). Prior to beginning the \nreport writing, the data within each subtheme was scoured to find the data extracts which best \nencapsulated the essence of each subtheme. These extracts included shorter segments, which were \nparticularly useful for making specific points, and more extensive extracts which provided context and \nflavour of the original text (Nowell et al., 2017). Furthermore, themes and/or subthemes which were \nparticularly prevalent in the data set were demonstrated through the provision of numerous data \nextracts in the final report. \n \n5.10 Ensuring Trustworthiness in the Research Process  \nThe concept of trustworthiness was introduced by Lincoln and Guba (1985)  as an alternative to the \nconcepts of validity and reliability used in quantitative research. Trustworthiness can be understood \nas the methodological soundness and the adequacy of the research (Holloway and Galvin, 2017). The \ncriteria upon which trustworthiness can be assessed, as proposed by Lincoln and Guba (1985) , are \ncredibility, dependability, transferability, and confirmability.  \nCredibility corresponds closely to the concept of internal validity used in quantitative research, and is \ntherefore concerned with the level of truth in the study findings, and how accurately they represent \nthe phenomen on under study (Holloway and Galvin, 2017) . To ensure credibility in participants’ \naccounts, it was important to establish and maintain a level of rapport and trust with them both prior \nto and during the interview process. It was hoped they would feel at ease when describing their \nexperiences of endometriosis,  thus providing an accurate account. However, participant accounts \nwere produced through the process of an interview, and although this might appear to take the form \nof a conversation, it is not a naturally occurring  one. Therefore, participants may have only spoken \nabout aspects of their experience that they perceived to be important for the research (Riessman, \n2008). While it is important to acknowledge this, as it may mean some aspects of their experience \nwere missed or downplayed, it should not have impacted on the accuracy of their accounts.  \nIn order to seek credibility in the analysis process, it was important to ensure that these accounts were \nadequately conveyed in the results of the analysis; that there was a good level of ‘fit’ between \nparticipants’ views and the researcher’s representation of such (Tobin and Begley, 2004) . This was \nfacilitated by prolonged engagement with the data, and peer review during phases of the analysis \n\n90 \n \nprocess (Nowell et al., 2017). The provision of sufficient participant quotes in the research report also \nsupports the credibility of findings. \nDependability is comparable to the concept of reliability; that findings are consistent and accurate \n(Holloway and Galvin, 2017) . This can be demonstrated by maintaining an audi t trail, which clearly \ndocuments the analysis process and decisions made (Tobin and Begley, 2004) . In this research, the \naudit trail was facilitated by using NVivo analysis software, and a researcher diary. The research report \nprovides an account of key decisions in the research process, such as contextual, methodological, and \nanalytical decisions.  \nTransferability relates to the generalisability of the research findings; the extent to which they can be \ntransferred to other situations or participants (Holloway and Galvin, 2017) . Qualitative studies are \nusually based on small samples, which limits the trans fer of findings onto the wider population, and \ntherefore only case -to-case transfer can be made (Tobin and Begley, 2004) . To enable readers to \nevaluate the transferability of the research to their own settings, a thick description of the research \nprocess is provided. This includes a rich description of factors such as the context , the participant \ncharacteristics, and the analytical process. \nThe final criterion for establishing trustworthiness is conf irmability, which is akin to objectivity; \nwhether the research findings derive from the data and not the researcher’s prior assumptio ns. This \ntoo can be established with a thorough description of the analysis process (Holloway and Galvin, \n2017). Furthermore, the use of extensive quotes within the research report provides evidence that \nfindings and interpretations are rooted in the raw data.   \n \n5.11 A Reflective Account of the Research Process \nReflexivity is a key component of feminist research (Hesse-Biber, 2010), and therefore in accordance \nwith the feminist lens,  this section provides a reflective account of the role of the researcher on the \nresearch process.  This account is written in the first person. It is important to consider the nature of \nmy relationship to those I interviewed; how my s ocial positioning might have influenced both the \ninterview process and the data obtained (Hesse-Biber, 2007) . It may also have influenced the \nquestions posed, and the analysis process. Consideration is first given to my personal characteristics; \nmy position as a white woman, in her early 30s, and a non-endometriosis sufferer, before moving on \nto a reflection on my professional background.  \nIn some respects, participants may have viewed me as an ‘insider’; I am female, and could be \nconsidered a ‘young adult’, although a few years older than participants. At the time of data collection, \n\n91 \n \nI was relatively recently out of adolescence (if you cons ider it up to age 24) and could identify with \naspects of adolescence/young adulthood that my participants discussed. I also chose to dress casually \nfor interviews, in jeans, trainers, etcetera, in attempt to mitigate any power imbalances based on age. \nI believe that my status as a woman was beneficial when recruiting and interviewing participants. \nMuch of the interview involved discussing symptoms related to menstruation, and as a woman, this is \nsomething which I have experienced. I believe this helped participants to feel comfortable to discuss \ntheir experience and symptoms openly. In addition, sensitive issues, such sex and relationships, may \nhave been discussed with less hesitance than if I were male (Padfield and Procter, 1996). \nA key characteristic that denoted me as an ‘outsider’ to those I interviewed was my health status; that \nI do not have endometriosis. However, endometriosis is not visible, and unless asked, I did not disclose \nto participants whether I had it or not. A small number of participants did ask, however, they all did \nso at the end of the interview, and so it is unlikely to have had an impact on the data collected. Some \nparticipants asked why I was doing the research (either at the beginning or the end of the interview), \nand they may have expected that if I were to have endometriosis, I would have mentioned it. Seeing \nas I did not, they may have assumed I did not have it.  \nWhen in consultation with WWE at a support group (while constructing the interview guide) I asked \ntheir opinion about me conducting this research given that I don’t have endometriosis. They said they \nviewed it largely as a positive thing; they were somewhat appreciative that someone who did not have \nendometriosis would want to spend time studying it. One woman in the group also commented that \nshe thought it would be beneficial due to me being more likely to be objective. I therefore never \nperceived my ‘outs ider’ status as a non -endometriosis sufferer to have a negative bearing on the \nresearch process. I were an ‘insider’, I may have projected my own experience and values onto the \nresearch process, possibly impacting the research questions posed, the intervie w, and the \ninterpretation of the data (Dwyer and Buckle, 2009), and so my impartiality may have been somewhat \nbeneficial.  \nMy ethnicity  may have influenced the data I was able to obtain;  I am White, which could have \ninfluenced recruitment as I was unable to recruit anyone from any other ethnicity. However, I have an \nAsian surname (‘Randhawa’) and so potential participants may not have known I am white. There are \nseveral potential reasons for being unable to recruit non -white participants, which are discussed in \nsection 7.6 of the discussion chapter. \nA final attribute to mention in relation to reflexivity is my professional background. I ca me to this \nthesis having worked for many years in mental health research, and then completing a masters in \n\n92 \n \nhealth psychology. While I do have a strong background in psychology, I do not feel I am tied to any \none discipline. Previous qualitative endometrios is research has been conducted by those who are \nnurses, sociologists, and psychologists, to name a few, all of which I drew upon in the design of my \nstudy, and the questions I chose to ask. \n \n  \n\n93 \n \nChapter 6. Study 1: Results \n6.1 Introduction \nThis chapter details the findings  of the qualitative study, which used semi -structured interviews to \nexplore the experiences of adolescents and young women with endometriosis. The demographic \ncharacteristics of the participants are presented, followed by the results of the thematic analysis. \n \n6.2 Participant Characteristics \nThe study sample consisted of 24 female participants, the characteristics of which can be seen in Table \n6.1 below. They were aged 18 to 24 years at the time of participation, with a mean age of 21.1 years. \nThe sample all described their ethnicity as ‘White British’.  \nParticipants reached menarche between age 9 and 14 years, and thirteen participants (54.2%) \nexperienced the onset of endometriosis symptoms from menarche. The mean age at symptom onset \nwas 13.1 years (range 9-15 years), however their mean age at diagnosis was 18.3 years (range 16–22 \nyears). Therefore, the average time from symptom onset to receipt of diagnosis was 5.2 years (range \n2-9 years). \n\n94 \n \nTable 6.1: Participant Characteristics \nParticipant \nPseudonym \nAge at \nInterview \nAge at \nmenarche \nAge at \nSymptom \nOnset \nAge at First \nGP Visit \nAge at \ndiagnosis \nNumber of \nlaparoscopies \n(additional \nsurgeries) \nRelationship \nstatus \nNumber of \nchildren Occupation Ethnicity \nEve 23 14 18 18/19 22 1 Living with \npartner (m) 0 Marketing White British \nAlexandra 20 11/12 14 14/15 20 1 Boyfriend 0 Student White British \nLouise 18 14 14 ? 18 1 Single 0 Student White British \nAnna 21 11 13 14 17 2 Boyfriend 0 Student White British \nJessica 21 12 12 12 18 2 Single 0 Student White British \nDaisy 19 10 10 10 18 1 Single 0 Student White British \nKate 18 13/14 15 15 17 1 Boyfriend 0 Student White British \nHelen 24 9 14 14/15 18 4 \n(Hysterectomy) \nLiving with \npartner (m) 0 Typist White British \nLucy 22 12/13 13 ? 18 1 Married 2 Sales Assistant/Student White British \nOlivia 18 11 11 11 18 1 Boyfriend 0 Children's entertainer White British \nCaroline 18 12 12 13 16 2 Boyfriend 0 Unemployed White British \nZoe 19 9 9 11 18 1 Single 0 PT work/Student White British \nEmma 22 15 15 15 21 1 Boyfriend 0 Administrator White British \nClaire 21 11 14 15 20 1 Boyfriend 0 Student White British \nAlison 19 12 14 17 17 1 Single 0 Retail Assistant White British \nHannah 22 13 13 13 18 2 Boyfriend 0 Student White British \nLaura 22 12 13 14 19 1 Single 0 Student White British \nRebecca 21 13 13 17 20 1 Single 0 Student/Full time work White British \nNatalie 21 13/14 15 15/16 19 1 Single 0 Early years educator White British \nSarah 20 13 13 14 17 1 Girlfriend 0 Student/Part time \nwork White British \nMegan 23 14 14 14 18 3 Single 0 Pensions service \nexecutive White British \nGemma 19 12 13 16 18 1 Boyfriend 0 Student White British \nSally 22 14 14 15/16 18 3 Living with \npartner (m) 0 Not working White British \nLynsey 21 11 12 12/13 17 4 \n(Oophorectomy) Boyfriend 0 Nursery nurse White British \n\n95 \n \n6.3 Thematic Analysis \nThis section outlines the results of the thematic analysis. The final analysis produced  seven \noverarching themes, characterising the experiences of these AYW with endometriosis. These themes, \nand their subthemes, are summarised in Table 6.2. It is important to emphasise that these themes and \nsubthemes are not mutually exclusive, and their interaction provides an understanding of the complex \nexperience of having endometriosis as an  AYW. Themes are illustrated using verbatim quotes from \nthe interviews, which are annotated with the quoted participant’s pseudonym and age (i.e. Eve, 23). \n \nTable 6.2: Themes and Subthemes Resulting from Thematic Analysis \nTheme Subthemes \nSymptom Onset: ‘In the Dark’ • Beliefs at symptom onset \n• Speaking to others \n• Menstrual health awareness and education \n• Endometriosis awareness \nSymptoms: ‘Communicating Something \nInvisible’ \n• Pain \n• Dyspareunia \n• Bleeding \n• Bowel and bladder Issues \n• Other symptoms \nMedical Experiences: ‘Getting Help’ • Medical encounters \n• Treatments \n• Diagnosis \nTeenage Life: ‘Missing Out’  • School and work \n• Social life and sports  \n• Relationships \nSupport and Information: ‘Nothing for my \nAge Group’ \n• Support \n• Information \nEmotional Wellbeing: ‘Not Just a Physical \nThing’  \n• Emotional Health \n• Perceptions of the self \n• Isolation \nFuture: ‘Uncertainty’ • Fertility \n• An ongoing battle: Future surgeries and treatment \n• Intimate Relationships \n• Education and career outlook \n• Hope \n \n6.3.1 Symptom Onset: ‘In the dark’ \nThis theme portrays the experiences of participants when their symptoms of endometriosis began; a \ntime in which they described feeling bewildered or ‘in the dark’ about what was happening. To try to \nmake sense of their experiences, participants drew on their prior understanding of menstruation, and \nsometimes spoke to those close to them. This often reinforced their confusion about their symptoms. \n\n96 \n \nSome aspects of feeling ‘in the dark’ were not confined to the period around symptom onset, however, \nand were also evident in participants accounts of living more generally with endometriosis. \n \n6.3.1.1 Beliefs at symptom onset \nParticipants described several different beliefs about their symptoms of endometriosis when they \nbegan; some assumed they were just ‘normal’ periods; some thought they had “ bad” periods and \nwere just “unlucky”; and a small number thought quite quickly that something was wrong. These \nvarying beliefs were in part affected by the timing of symptom onset. Most pa rticipants experienced \nsymptom onset at the time of menarche, but others described either a sudden onset some years later, \nor a gradual worsening of symptoms until they started to interfere with daily living. Often, those who \ndid not experience onset at me narche, did however, indicate that upon reflection their periods had \nalways been quite painful: \n “…periods were really like excruciating but I think because they’d gradually got worse every \nsingle month… I did think that was a normal pain, I just knew that that wasn’t normal during \nsex…” (Eve, 23).  \nWhen trying to make sense of their symptoms, this not ion of ‘normality’ was very prominent in \nparticipant accounts. This was particularly evident in those whose symptoms started at menarche, \nwhich they indicated was due to a lack of understanding of what ‘normal’ periods were, and that they \nhad nothing to compare their experience with. Some participants said they drew upon the experiences \nof family members, such as their mothers or sisters, who also had “bad periods”, and so they thought \nthis was normal for them. In addition, some said they acknowledged that their pain was bad, but \nbelieved that maybe they just had a low pain threshold, that it just happens to some people, or that \nthey would just grow out of it as they got older. These quotes illustrate some of these beliefs: \n“…obviously when you’re younger, you just think that everything’s normal, you don’t think that \nthings aren’t quite as they should be, you just think ‘ oh this is how it is, everybody complains \nabout period pain, this must be it’.” (Rebecca, 21). \n“…and I just thought that I  know some people just get bad periods, I just thought I had bad \nperiods and like that was it.” (Zoe, 19).  \nBeliefs that symptoms were ‘normal’ or were just the result of having ‘bad periods’, were almost \nunanimous among participants. However, a small number of participants, who experienced symptom \nonset sometime after their periods began, were more likely to think that something was wrong:  \n\n97 \n \n“I didn’t know what was going on, I was very confused, but because I know my body, I knew \nthere was something that wasn’t right, you know, I knew it wasn’t just a period pain, I knew \nthere was something that had to be wrong because, I know myself, and I know when I’m not \nright.” (Natalie, 21). \nThese early beliefs about symptoms affected participants in several ways, incl uding delayed help \nseeking, suffering in silence, and reduced participation in daily activities, which will be discussed in \nmore detail subsequently. There were several factors involved in how these beliefs were both formed \nand maintained, which will be discussed in the following subthemes. \n \n6.3.1.2 Speaking to others \nWhen their endometriosis symptoms began, participants often did not discuss them widely, which \ncontributed to feeling ‘in the dark’. Most did report to have told their mothers, often telling them they \nhad heavy or painful periods. Many described their mothers as supportive, particularly offering \npractical solutions such as painkillers and hot water bottles. Most participants also cited their mother \nas the eventual driving force behind their decision to  first seek medical help for their symptoms: “I \nthink it was probably my mum that pushed me to go [to the doctor]…” (Olivia, 18).  \nAlthough supportive, mothers’ reactions to symptom disclosures sometimes initiated and reinforced \nparticipants’ beliefs that their symptoms were just ‘normal’ periods. Mothers often likened them to \ntheir own experiences with ‘difficult’ periods, and some mothers implied that it was just one of those \nthings:   \n“…well my mum said she just had bad periods when she was younger, so we just thought that \nit was that.” (Zoe, 19).  \n“…my mum knew bu t she just said the same, like ‘ it could just be how your pe riods are, \neveryone’s different’.” (Sally, 22). \nIn a few cases, participants also told other family members, such as their grandmother , father, or \nsister. Early symptoms were very rarely disclosed to friends, however, unless they were already talking \nabout periods. Some stated they didn’t discuss their symptoms with friends because they just thought \nthey were normal periods:  \n“…we’d spea k generally about periods… [but] I wouldn’t really overdramatise it as I just \nthought it was normal.” (Kate, 18). \nA few participants stated feeling embarrassed talking about periods, using labels such as “taboo”, \n\n98 \n \n“stigma” or not “socially acceptable”; an issue which many referred to as being standard at their age. \nTherefore, if their symptoms interfered with school or social activities, excuses such as “ not feeling \nvery well” or “I had a bug”  were often used. However, this embarrassment and lack of disclosu re \nlimited the possibility for participants to compare their symptoms with others, and they therefore \nmissed opportunities to recognise that they had a problem:  \n“…when you’re 12, 13 its embarrassing talking about your periods, you don’t tell people you’re \non your period, you don’t talk about it to your friends, so there’s none of this comparison of \nwhat’s right and what’s wrong, you just assume everyone’s going through it.” (Anna, 21). \nIf friends were told, some participants reported that friends also suggested that their symptoms were \nnormal: “all my friends around me were saying ‘it might just be period pain, it’s just growing up’.” \n(Natalie, 21). In addition, some participants reported friends who said they were “over-exaggerating” \nor “making it up” to get out of school. It was not only mothers and friends who normalised symptoms, \nbut also doctors (discussed in Section 6.3.3) and schoolteachers:  \n“…people like teachers… were like ‘oh, everyone gets periods, it’s nothing to complain about’,” \n(Zoe, 19).  \nBy having their symptoms normalised by others, participants continued to feel ‘in the dark’, and  it \nfurther limited their ability to recognise that their symptoms were of concern. Factors such as these \ndelayed help-seeking and prolonged the wait for a diagnosis. However, on rare occasions, through \nspeaking to others at symptom onset, participants were able to identify that there was a problem. \nThis typically occurred when someone they knew  (i.e., mother, relative, or family friend) had also \nsuffered with endometriosis, or because their symptoms could clearly not be mistaken for a normal \nperiod:  \n“I told her [my mum] when I first started, and then I told her probably after about 2 weeks of \nbleeding I was like ‘is this still meant to be happening? ’ and she was like ‘no, not really’. And \nthat’s when she first took me to the GP.” (Hannah, 22). \n \n6.3.1.3 Menstrual Health Awareness and Education \nAs highlighted above, participants often used the word ‘normal’ when discussing their initial symptom \nbeliefs, which suggests that at the time, they had some notion of what they thought a ‘normal’ period \nwas. For some, these beliefs were attributed to thei r age, and the fact that periods were new, and \nthey had nothing to compare them with. Many participants drew on what they had been told about \nperiods, that they were to expect some pain and discomfort. These points are illustrated by Helen and \n\n99 \n \nDaisy:  \n“It’s hard to tell because when you’re that age you just assume that what is happening to you \nis normal, you don’t have any sort of experience,” (Helen, 24).: \n“I first started experiencing these symptoms when I was about 10, but then, I didn’t always \nthink that they were very significant if that makes sense, because you know, you are always \ntold that everyone gets painful periods, or that’s what everyone experiences.” (Daisy, 19). \nOne source of information about periods discussed by participants was menstrual health education \n(MHE) at school. Most descriptions of such were negative, with the words “basic” and “brief” occurring \noften, and even words like “appalling” and “shocking”. S ome participants stated that too much \nemphasis was given to sexual health, avoiding pregnancy and STIs, and little given to reproductive \nhealth. Some said that their education about periods was scientific, only covered in biology lessons, \nor was otherwise just about the practicalities of having a period, such as how to use a pad or tampon. \nCommon across participant accounts of MHE was that there was a vast lack of information about the \n‘experience’ of a period; what they should be like, what is ‘normal’ and  what is ‘not normal’. These \nquotes by Anna and Eve summarise these issues: \n“I remember being taught you have a period, every month, or every 28 days, you bleed, it’s \nquite painful, and then your body goes round in the next cycle again. But I was never told about \nto what extent the periods should hurt you, what extent should you let it affect your life, what \nextent do you need help?” (Anna, 21). \n“I can remember we had like one lesson on it before you got to middle school and they just \nbasically tell you this is probably what’s going to happen to you really soon and this is what a \nsanitary towel is and that kind of thing but that was it, they kind of just tell you what a period \nis, not what’s normal and what’s not normal.” (Eve, 23) \nWith a lack of understanding about the experience of a period, participants were unable to recognise \nthat their symptoms represented a deviation from what might be expected. Participants also received \nlittle to no education about common reproductive health conditions. Although some noted that they \nhad heard about polycystic ovaries and fertility issues, none of the participants had heard about \nendometriosis at school. Some exclaimed their surprise at this in terms of how prevalent \nendometriosis is: \n“…absolutely not during any sex ed I had [had endometriosis been discussed], which being at \nan all-girls school, I am now in hindsight quite surprised about, because we had probably about \n80 girls in our year, so statistically probably about 8 or 10 girls in our year probably would have \n\n100 \n \nhad it” (Gemma, 19) \nParticipants unanimously agreed that they thought endometriosis should be taught about in school. \nSome were very passionate about this; Olivia had recently taken part in a media interview, talking \nabout how more education is needed in schools, and Laura had designed and piloted an information \nbooklet about endometriosis to be used in schools. In summary, participants felt that their education \nat school, about menstruation and reproductive health issues, was insufficient, and contributed to \ntheir confusion and notion of being 'in the dark' at symptom onset. \n \n6.3.1.4 Lack of Awareness of Endometriosis \n“I literally didn’t know that it existed. Neither did like my mum, or my sister, or anyone.” (Olivia, \n18) \nThis opening quote encapsulates participants’ views; that there is a distinct lack of awareness of \nendometriosis, not only amongst themselves, but also those around them. Family, friends, teachers, \nand even some medical professionals were all reported to lack an awareness of endometriosis. Some \nfelt this was attributable to the lack of education they and others receive about endometriosis, as \ndiscussed above.  \nParticipants reported rarely having heard of endometriosis prior to symptom onset. The few who had \nheard of it generally had a family history. Some participants only acquired awareness about \nendometriosis through the internet, when attempting to search for a cause of their symptoms. Two \nparticipants described how they stumbled across endometriosis through the media, and noticed that \nit fit their symptoms, and one first learned about it whilst undergoing training at medical school. These \nquotes illustrate these issues: \n“…yes [I had heard of it], but that’s because my family had it. There’s been no health \nprofessional, or teacher, or anyone who has told me about it” (Kate, 18). \n“So I started to do my own research, just online and things… and I came across endometriosis, \nand it sort of fit what I was experiencing.” (Helen, 24). \nIt was common for participants to report that endometriosis was first mentioned to them during a \nmedical consultation, however, this was often at a hospital visit or gynaecology appointment, and was \nrarely mentioned by GPs. A small number of participants only heard about endometriosis when they \nwere given their diagnosis: \n“No I’d never heard of it. Like I say it was that time when I’d just had the laparoscopy and really \n\n101 \n \nI’d got the diagnosis and that’s when it was. They came to me after my operation and were \nlike “you’ve got endometriosis” and I couldn’t even say t he word never mind understand it.”  \n(Lynsey, 21). \nParticipants almost universally attributed their delays in help -seeking to their lack of awareness of \nendometriosis. They also stated that if they had known about it, they would have been more assertive \nwhen seeking medical help and pushed for a referral. A small number of participants felt that this also \ndelayed obtaining effective symptom-management. Laura and Zoe illustrate these issues: \n“I feel like if I’d have known about it when all the symptoms started  happening… it would be \nsomething I would of considered I had a long time before, because… I didn’t get it looked into \nuntil I was 19, and I started experiencing symptoms when I was 13.” (Laura, 22)  \n“…if I had of knew what it was, I could have maybe thought that it would have been that earlier \non and maybe like, I would have had things more under control now” (Zoe, 19). \nParticipants reported that those around them were also largely unaware of endometriosis. Most often \ndiscussed were friends; and participants felt that they were therefore unable to understand what they \nwere going through. Friends would often liken participants’ symptoms to their own period pains, \nwhich caused frustration. In addition, friends’ lack of awareness and understanding meant that t heir \nprovision of support was limited. Participants often compared the awareness of endometriosis to that \nof other long-term conditions, particularly diabetes: \n“…so like if I said to my friends I had diabetes they’d be like ‘oh shit’, do you know what I mean? \nI say I’ve got endo and they’re like ‘oh’… nobody has a clue what it is, and then you just don’t \nget any sympathy, you don’t get any understanding, it’s just awful.” (Emma, 22). \nThe lack of awareness and understanding of endometriosis amongst friends, family, and partners \nimpacted relationships, discussed further in Section 6.3.4. This occurred both at symptom onset and \nwhile living with endometriosis. Therefore, it was not only participants who were ‘in the dark’ about \nendometriosis, but also those around them:  \n“…it seems to be that you have to be in the secret endometriosis club to know what it is.” \n(Laura, 22). \n \nSummary \nMany participants described feeling ‘in the dark’ at symptom onset, which resulted from a complex \ninterplay of several different factors; their own beliefs, the beliefs and experiences of those around \n\n102 \n \nthem, their hesitance in discussing menstruation, and their lack of understanding about menstruation \nand endometriosis. Many stated that they would have liked to receive more education about these \nissues, which would have improved their understanding and shortened delays in help seeking. \nIncreased education would also improve the understanding of friends and family, which they believed \nwould help improve relationships, and enhance the support they received.  \n \n6.3.2 Symptoms: ‘Communicating Something invisible’ \n6.3.2.1 Pain \nPain was described by all participants, and it was a central feature of their experience of \nendometriosis. Pain was typically located in the pelvic area, but was also reported in the back, and \ndown their legs. A small number of participants stated that the y found it difficult to put their pain \nexperience into words. Among those that did describe their pain, several similarities between \nparticipants’ accounts emerged. Words like “stabbing”, “shooting” and “sharp” were frequently used, \nand some rated their pain numerically out of 10. Many participants used similes to describe their pain, \nwhich often involved metallic objects like knives, hooks, and rods, as well as some form of mechanical \naction: \n“It was like stabbing, it felt like somebody had basically put a  knife through and just cut \nacross.” (Caroline, 18)  \n “…sometimes it feels like you’re being punched…” (Kate, 18).  \n“The only way I can describe it [the pain] , is that it feels like someone’s got a round of sharp \nnails, and is literally putting it in your stomach and just turning it and turning it” (Anna, 21) \nParticipants often compared the intensity of their pain to real physical experiences, such as “really \nreally bad period pain” . One participant had experienced childbirth and likened their endometriosis  \npain to that of labour. Another compared the pain to her experience of a miscarriage:  \n“it feels like somebody is pulling your uterus out, it’s horrendous. I’ve had a miscarriage and I \ncan tell you it’s quite similar pain to that.” (Emma, 22). \nMany partic ipants described the physical impact of their pain, using words like “debilitating”, \n“crippling”, and “paralysing”. A commonly reported physical reaction to the pain was sickness or \nnausea, and some participants described needing to curl up in a ball, bend over, or confine themselves \nto bed:   \n\n103 \n \n“I mean there was times where I’d be throwing up and vomiting because the pain was so much \nI couldn’t control myself” (Natalie, 21). \n“I couldn’t get out of bed, I couldn’t walk because of the pain.” (Sarah, 20). \nWhen describing their pain, participants often commented on the duration and frequency. Initially, it \nwas common for pain to occur around the time of menstruation, sometimes starting a few days prior \nto period onset, and lasting either the first few days or the  entire period. The intensity of the pain \nmight come and go, or stay constant throughout:  \n“…[I’d get pain] f rom the moment I’d wake up on the first day of my period until when it \ncompletely finished, for like the whole week.” (Olivia, 18).  \nAlmost all participants noted a progression in their symptoms, and particularly in the frequency of \ntheir pain, starting to occur outside of periods. Some experienced short bursts of intense pain, which \nappeared seemingly at random in their cycle, or else at the mid -point (perhaps around ovulation). \nMost participants, however, began to experience more frequent pain, on a weekly or daily basis, and \nsome described their pain as being “constant”. Sometimes, pain could be a reaction to overexertion. \nThe below comments further illustrate these points:  \n“…when I was 16, 17, it started to be all the time and not when I was just on my period.”  \n(Alison, 19) \n“Well I’m in constant pain every single day, but it does – it comes in like waves, so say if I was \nto go out for the day, or if I was to go and like walk to the shops, I would then be in pain after.” \n(Olivia, 18)  \nParticipants also described pain arising from tampon use. Although described as a somewhat similar \npain to dyspareunia (discussed below), tampon use usually occurred prior to first sexual encounters, \nand so this symptom was present much earlier. The pain was said to occur while wearing a tampon, \nas well as when putting them in or taking them out. This feeling was described by many as \n“uncomfortable”, but again, words like “stabbing” “sharp” and “burning” were used. As a result, most \nparticipants stated that they had stopped using tampons, or only used them when absolutely \nnecessary. Often, tampons did not offer enough protection for their volume of blood loss anyway: \n“it was like, like a stabbing pain again in my lower abdominal, but yeh, I just couldn’t use it \nafter that because I don’t think there’s any point using something that’s going to cause you \nmore pain than you should have to be in.” (Daisy, 19). \nPain arising from internal examinations was described by about a third of participants, who used \n\n104 \n \nadjectives such as “sharp”, “uncomfortable”, and “excruciating”. This was an internal pain, likened to \nboth tampon use and sexual intercourse. One participant, when asked about experiences of painful \nsex, stated that she was a virgin, but that her internal ultrasound “was just excruciatingly painful and \nI just had to tell them to stop” (Laura, 22). \n \n6.3.2.2 Dyspareunia \nEighteen participants in this study complained of dyspareunia, which occurred during and/or after \nsexual intercourse. Due to the age of this sample at symptom onset, many participants had endured \nthis symptom from their first sexual encounter, and some had  never experienced sex without it. \nAlthough most participants agreed it was an internal pain, there was otherwise a lot of variation in \nparticipants’ descriptions of the pain, which are highlighted in Figure 6.1 below. \nPinching. It’s like a pinching pain. All across your tummy, all in there. Yeah it’s like lots of pinches, that’s the \nonly way to describe it. (Anna, 21) \n \nIt was like, it first starts off as just like uncomfortable, like it’s just uncomfortable, and then as it progresses, \nthe sex progresses, it gets more and more unbearable to the point where it is just so painful you’re like ‘you \nhave to stop, I can’t do it anymore.’ (Kate, 18) \n \nIt’s like (p), really, the only way I can describe it is it’s like cervixy, (Lucy, 22) \n \nIt was this sort of, internal pushing feeling, like – I’m trying to think back now, like it was sort of as if my \npelvis was like pushing down, and it just felt horrible, like this dull sort of, um (p), it wasn’t like the hole \nhurting, it was this internal pushing feeling like inside. Yeah, that’s the only way I can really describe it. \n(Rebecca, 21) \n \nIt’s like being torn, it’s horrible. It leaves a burning sensation again, it’s just absolutely the worst thing ever. \n(Megan, 23) \n \n…this was almost like you were being stabbed in your stomach, like it was really kind of deep (Gemma, 19) \n \nIt’s like a dull aching pain, it’s like something’s there that’s not supposed to be there kind of pain. It’s hard to \ndescribe (Sally, 22) \n \n…it’s like, really bad pain, it’s like a stabbing pain, like being stabbed with a knife, oh it’s just really painful. \n(Lynsey, 21). \nFigure 6.1: Participants' Descriptions of Pain Experienced During Sexual Intercourse \n \nAgain, participants frequently used similes and mechanical notions to describe dyspareunia, of being \n“stabbed”, or “pushed” etc. Participants often avoided sex (or relationships) altogether, or sometimes \ndid it out of feeling guilty . Many participants were in a long -term relationship and described their \n\n105 \n \npartners as very supportive. However, some indicated the difficulty in explaining this symptom when \na relationship was new, or when having more casual sexual encounters:  \n“…if it was someone that I was having a more casual thing with, it was kind of really awkward \nto be like ‘oh yeah by the way I have this thing’, and trying to tell them the whole back story \nof like 3 years of what’s happened in like 2 minutes.” (Gemma, 19). \nThis symptom could really impact intimate relationships, often causing tension and arguments, and it \nwas cited by five participants to be the cause of a relationship breakdown. One participant stated that \nher boyfriend was unfaithful because she was unable to have sex, and another said she broke up with \nher boyfriend because she felt so guilty that she was unable to have sex with him. A few participants \nmade explicit reference to their age when talking about dyspareunia, and the impact it had: \n“We’re just young and we want to have fun and we want to have sex and it’s hard to get over \nthat” (Kate, 18). \n“When he eventually broke up with me his entire reason was ‘you have endometriosis an d I \ncan’t deal with it, and I’m 18 and I need to be having sex and you can’t give me that, so I’ve \nslept…’ – he slept with like 8 other girls while we were together” (Alison, 19).  \nDyspareunia was experienced by m ost participants, who not only discussed th e physical \nmanifestations of the symptom, but also how it influenced their intimate relationships. At an age \nwhere sexual relationships were often quite new, or more casual, participants’ found difficulty in \nexplaining this symptom to others. It had additional impact on the way they viewed themselves, which \nis discussed further in Section 6.3.6. \n \n6.3.2.3 Bleeding \nOne of the key symptoms experienced by participants was heavy menstrual bleeding (HMB), which \nwas the most common symptom after pain, and began for most a t symptom onset. Descriptions of \nHMB were largely given in terms of the number of pads or tampons used, and participants often said \nthat such products were unable to contain their bleeding, and so they experienced leakages onto their \nclothes/beds. These quotes illustrate descriptions of HMB: \n“…when I was 16, I would be bleeding really heavily, through a super plus tampon and through \na pad, um, and I’d just be changing them hourly” (Emma, 22). \n“…it would be literally like every time, I’d wear 2, 3 pads, and then I’d go onto the bigger \nmaternity ones, but even then I’d have to – I’d still go through onto my pants and onto my \n\n106 \n \ntrousers.” (Sally, 22). \nSome participants stated that the heavy bleeding would not relent over the course of the period, being \nat the sam e level from beginning to end, sometimes lasting over a week. A small number of \nparticipants said that their blood loss made them feel faint, or caused suspected anaemia. Many \nparticipants recalled missing school due to HMB, often due to leaking, or even just because of the fear \nthat they might leak at school. It also interfered with sports and physical activities: \n“I couldn’t go in and do my dance classes… cos obviously I wasn’t going to dance around when \nthere was gallons of blood coming out of me” (Anna, 21). \nIn addition to HMB, most participants also experienced some form of abnormal bleeding at some \npoint. Spotting, or random bleeds between periods, were a frequent occurrence, affecting almost half \nof the participants. Some commented on the unpredictabi lity of this, and so they always had to be \nprepared, carrying pads or tampons wherever they went. Most participants were on some form of \ncontraception to help manage their symptoms, and therefore these bleeds were unexpected:  \n“I take the pill back-to-back so I don’t have a proper period, but I just bleed at random times.” \n(Zoe, 19).  \nIt was also common for participants to experience episodes of prolonged bleeding, which could last \nfor weeks, with little break. Two participants experienced parti cularly extended periods of bleeding; \nEmma had periods lasting “months on end”, and Megan described a reaction to the coil, in which she \nbled for 287 days in a row, from when it went in until it was taken out.  \n \n6.3.2.4 Bowel and Bladder Symptoms \nSymptoms affecting the bowel and bladder were very common in this sample, experienced by 19 \nparticipants. Bowel symptoms were more common, and many participants received a diagnosis of IBS \nat some stage, although for some this was offered as an explanation for their symptoms prior to their \ndiagnosis of endometriosis. Symptoms associated with the bowel included pain during defecation, \nirregular bowel movements, diarrhoea, and switching between diarrhoea and constipation. \nParticipants were often embarrassed about bowel symptoms, and they also interfered with daily life. \nFor example, Lucy said that they interfered with “going to school and going to other people’s houses”. \nA few participants commented on the considerable impact that bowel symptoms had on their l ives, \nsometimes causing more disruption than other symptoms of endometriosis, as illustrated in Figure \n6.2. \n\n107 \n \n“actually the pain that I’ve had sometimes with those bowel symptoms have been as painful as my \nperiod pain was in the past.” (Laura, 22). \n \n “it was really embarrassing and horrible, it like ruined my first and second year  [at university], I \nwould get this like urge to go to the toilet, (p) like not for a wee, I’d have to go (p), like 6 or 7 times \na day” (Claire, 21). \n \n“they’ve [bowel symptoms] really impacted upon sort of my independence and my freedom, because \nnow I never know when they’re going to happen and I’m sort of more scared of going out, because \nI have had experiences of being on a train and then suddenly having these awful symptoms, and sort \nof that feeling of being trapped somewhere” (Laura, 22). \nFigure 6.2: Participants' Descriptions of Disruptions Caused by Bowel Symptoms \n \nHalf of the participants experienced bladder related symptoms, most of whom also had bowel \nproblems. Some experienced very frequent urges to urinate, feeling unable to ‘hold’ their bladder, or \na feeling that their bladder was not fully empty after going to the toilet. Others experienced pain when \ngoing to the toilet, or symptoms like a urinary tract infection (UTI). One reported constant UTIs and \nsaid she was now left ‘incontinent’.  \nAgain, these symptoms could cause significant impact on participants’ lives. Multiple toilet visits were \nsaid to cause embarrassment and could interfere with sleep if occurring at night. One participant was \nafraid to make plans due to her bladder issues:  \n“I don’t like car journeys, I panic if I don’t know where a toilet is. I’l l actually avoid plans, it’ll \nstop me making plans if I don’t know that - if I can’t get to a toilet quickly” (Eve, 23). \nThese bowel and bladder symptoms were often not immediately linked to periods, or to \nendometriosis, and so some would not mention it to  their doctors or gynaecologists. Some \nparticipants had to undergo additional intrusive investigative procedures (i.e. colonoscopy, \nendoscopy, and cystoscopy) to identify the cause of these issues. \n \n6.3.2.5 Other symptoms \nThe participants reported a range of addit ional symptoms including dizziness or fainting, nausea, \nvomiting, migraines, bloating, and fatigue. As described earlier, sickness could be a result of pain, \nhowever some experienced it as a separate symptom. This caused issues such as reduced appetite \nand weight loss, because participants struggled to eat or hold down food. Fatigue caused problems at \nschool, affecting concentration and even attendance, and many stated they often wanted to just stay \nin bed. One participant felt this was particularly at odds with her age: \n\n108 \n \n“…it impacts me so much, like mentally and physically because I think ‘oh, I can’t do anything, \nI’ll just lie in bed’,  and I just want to sleep all the time or I’m so tired all the time. I have no \nenergy and like, I just don’t live the life of a normal 19-year-old...” (Zoe, 19). \nBloating was mentioned by almost half of the participants, and as well as causing them to feel \nphysically uncomfortable, participants felt that it affected their self-image, which is discussed further \nin Section 6.3.6.  \n \nSummary \nThe many experiences of pain, as described here, impacted participants’ lives in several ways, affecting \nschool attendance, social activities, and sleep quality, as illustrated in subsequent themes. \n \n6.3.3 Medical Experiences: ‘Getting Help’ \nA significant feature of participants’ narratives was their experience of medical care, including \nencounters with medical professionals, and descriptions of their medical and surgical treatments. In \naddition to finding a way to manage their symptoms, this experience focused largely on the pursuit of \na diagnosis of endometriosis.  \n \n6.3.3.1 Medical Encounters \nParticipants encountered a range of medical professionals, and this sub -theme describes their \nexperiences of the care they received, and how they navigated thei r way through the system. Their \nGP was usually the first and most frequent medical professional visited, particularly prior to referral \nto a gynaecologist or specialist. However, over half of the participants also attended an accident and \nemergency (A&E) hospital at some stage in their journey, to seek additional help.  \nMost participants reported encounters with medical professionals in which their symptoms were \ndismissed or normalised.  There was little specific discussion about the gender of the medical \nprofessionals who dismissed them. A small number of participants stated they were taken more \nseriously by female clinicians, and on the contrary, one said she found females to be very di smissive, \nwhich she found surprising given that they would have had experience of periods.  \nDismissals often delayed referrals and subsequent receipt of a diagnosis. This issue was predominantly \nreported in interactions with GPs; participants were frequent ly told that their symptoms were \n\n109 \n \n“normal”, “just bad periods”  or that they would “settle down” . Some participants continued to \nexperience these dismissals when seeing specialists, however.  They reported to be sent away after \nbeing given little to no treat ment or investigation, which they found frustrating given the often -long \nwait for referral. Many participants believed that these dismissals were due to their age, and perhaps \ntherefore not being taken seriously. Some were directly told by medical professi onal that their age \nplayed a factor. Quotes illustrating these points are shown in Figure 6.3. \nLike just your GP that you go to… they just think, especially when you’re at a young age, they think \nyou’re just being over dramatic. (Alexandra, 20).  \n \nAnd then I started going to the doctors, and so many doctors would turn me away and say ‘no, no \nit’s nothing to worry about, you’re just a young girl going through periods’, you know. (Natalie, 21). \n \n…this is the age problem as well, it’s just, you know you don’t want to do an ultrasound scan on a \nyoung person, you don’t want to get them worried and stuff. (Daisy, 19). \n \n…when I first when I just explain ed all my symptoms and he  [the gynaecologist] said ‘ there’s a \npossibility you could have endometriosis, but we won’t ever know until you’ve had a laparoscopy. I \ndon’t really want to do a laparoscopy on you because you’re so young…’ (Kate, 18).  \nFigure 6.3: Age References Regarding Medical Encounters \n \nSome participants reported that such dismissals caused them to question themselves and the validity \nof their own pain, and a few lost faith in the healthcare system. Many participants described having \nto be “pushy” or “persistent” to obtain appropriate care or referrals. For example, they often described \nvisiting the GP surgery multiple times, and sometimes confronted their GP with possible \nendometriosis after doing their o wn research. Many took their mothers with them for additional \nsupport and advocacy: \n“I remember going back almost 3 or 4 times in that month, with these pains… Um yeah, \neventually in February I went with my mum one time and my mum was like ‘I think she needs \nto go and see a gynaecologist, or have an ultrasound’, so they eventually referred me to that.” \n(Olivia, 18). \nA significant number of participants decided to seek private treatment, either when they were unable \nto receive a timely referral to a speciali st, or when specialists dismissed them. This was usually paid \nfor by parents or was covered under their parents’ medical insurance as they were under 18. \nParticipants reported feeling lucky to be able to go privately, and feared the delays they would have \nencountered otherwise. These points are further illustrated in the below comments: \n“So I went private after the third bad pain… because, I didn’t want to wait forever to have - to \n\n110 \n \nbe diagnosed with something.” (Daisy, 19). \n“…the reason I was referred strai ght away is cos I’m on private medical healthcare, which I \nthink has made a massive difference in me getting diagnosed as quickly as I did. I always say \nthis to my friends all the time, if I didn’t have private medical I really don’t know how people \ndo this without it.” (Anna, 21). \nParticipants also described some positive encounters with healthcare professionals. For many, this \noccurred once referred to a specialist or gynaecologist, as their symptoms were taken more seriously \nin this setting. They describ ed being listened to or believed, with one stating it was like “a breath of \nfresh air” (Rebecca, 21). Although more rare, some participants described positive interactions with \nGPs, who took them seriously and gave them appropriate treatment or prompt refe rrals. In these \ncases, participants stated that they assumed the GP had undergone training in gynaecology, or were \nrecently qualified and therefore keen to impress: \n“…[the GP was] a very just newly qualified doctor actually, she was just – she’d obviously just \nrecently been trained on endometriosis, which maybe doctors from 20 years ago haven’t been. \nDo you see what I mean? So she just obviously knew, and she just referred me, and it was like \nan angel, honestly I was just like ‘oh my god’.” (Emma, 22). \nAlthough specialists were described as more likely to take participants’ concerns seriously, some \nparticipants still said their appointments were brief, with little suggestion other than to have a \nlaparoscopy. While this was generally the desired outcome, participants reported that they received \nlittle information about endometriosis and/or the procedure.  In addition, a small number of \nparticipants who were referred for laparoscopy were told that it was just to rule out endometriosis, \nbut they were probably too young to have it. These quotes highlight some of these points: \n “It was a very very very quick appointment, very brief, “we think you’ve got this, we’ll find out \nmore from the laparoscopy, the laparoscopy is going to be in 2 weeks” – along those lines, that \nwas all the information I got on that day.” (Anna, 21). \n“…so I got referred, and went for my consultation and my pre -op stuff, and … they sat and \nwent through the illness with me … but every person was saying ‘ but you won’t have it. We \nhave to do thi s to check but you will not have it’. And I mean they didn’t say ‘you probably \nwon’t’, it was ‘you won’t have this, you are too young, you will not have this disease’.” (Emma, \n22).  \nParticipants often described communication issues in healthcare settings; being given conflicting \ninformation, misinformation, or no information at all. Adding to this issue, participants reported a \n\n111 \n \ntendency to move between residences in their late teens/early 20s, perhaps going between home and \nuniversity, and some therefore had their care covered by healthcare providers in different areas. Such \nparticipants sometimes reported issues with continuity of care ; undergoing repeated investigations \nand increased wait times, while healthcare providers in different areas failed to commu nicate with \neach other. Some also travelled the sometimes -long distances between home and university for \nappointments as it was easier than registering elsewhere and starting over. \n“…when these problems started happening in about August time and I went to my doctors, I \nstarted getting investigation happening at home, so I was having blood tests done, blood tests \nre-done, ultrasounds which hadn’t revealed anything… But then when I went to university my \nGP surgery changed to my university GP surgery so when I went to them about this problem I \nhad to start all over again, so back with having blood tests again.” (Laura, 22). \n“…sort of during all this time, I was trying to fight to see different consultants, cos I moved \naround a lot, I was at university in York, and then Exeter, and then I got a job near London, um \nand so each time I moved it was another 6 months to wait to see a consultant, and sort of \ngetting different opinions when I did see them.” (Helen, 24). \nIn numerous instances, participants also sought help from A&E when symptoms got severe, and some \ndescribed being “in and out of A&E” quite frequently. However, without a diagnosis, they were often \nunable to obtain the correct help, and many described having several investigations before being sent \nhome with strong painkillers. Again, some were told it was just their period and were sent  on their \nway. Some participants felt that unless they were in a specialist ward, hospital staff often had no \nawareness of endometriosis. \n \n6.3.3.2 Treatment \nParticipants had tried an extensive range of medical treatments, and all had undergone at least one \nlaparoscopy. It was common for participants to attempt to self-medicate with paracetamol, ibuprofen, \nand other OTC painkillers before seeking medical help, yet these were reported to be of little help. In \naddition, almost half of the participants reported applying heat to help manage their pain: \n“I just sort of went about with constant heat patches attached to me, on my front and on my \nsides at school. So I was like a walking hot water bottle.” (Rebecca, 21). \nAfter seeking medical help, most participants were initially given the contraceptive pill or injection to \ntry to manage their symptoms (prior to referral to specialists). However, some felt they had to lie to \nobtain the prescription, stating that they wanted these for contraception, rather than the symptoms \n\n112 \n \nthey were experiencing. Conversely, some reported that they believed their GP thought they were \nlying about their symptoms to obtain contraceptives, as highlighted in this quote:  \n“I wanted to try the pill because… lots of my friends were starting to go on the pill, for painful \nperiods... Um, I didn’t see my usual GP, I saw this other guy, and he was a bit dismissive \nbecause I think he just thought, cos I was 15 I think he just thought I like was using it  as an \nexcuse to get contraception, you know he was asking me if I was sexually active and stuff.”  \n(Claire, 21).  \nA small number of participants attended a family planning clinic to obtain treatment after being \ndirected there by a nurse/GP, and one participant self-referred after being refused the pill by a GP due \nto being “too young”. Participants felt there were connotations of attending such clinics:  \n“…it was the local family planning clinic, it’s where people used to go for the STI checks around \nthat age and, so I guess you were there and all these rumours went round about how you got \nseen there by one person and that was it.” (Anna, 21). \nParticipants often described many years of trial and error with different contraceptive treatments, \nboth prior to and following diagnosis, because the efficacy of such treatments varied greatly. The pill \nwas used most, and in only rare cases was it said to completely control participants’ symptoms. \nHowever, many participants stated that at best, the pill helped to regulate their periods, so they knew \nwhen to expect them and could plan around them, but it did little in the way of controlling their \nsymptoms. Over half of the participants had tried the hormonal coil, which after a period of ‘settling-\nin’, often lead to improvement for most. Yet it was still common to experience random bursts of pain \nand breakthrough bleeding, and some experienced prolonged bleeding, lasting many months.  \nSome participants’ treatments had escalated; trying much stronger hormonal injections, w hich put \nthem into the medical menopause. In addition, they often took painkillers, ranging from NSAIDs, up \nto morphine and tramadol. Some participants commented on the large volume of medication they \nwere taking, expressing concern about taking so many me dications, and particularly the potential to \nbecome addicted: \n“…during the flare up I was taking 2 tramadol tablets, plus 3 ibuprofen, plus a naproxen every \n4 hours. And even that, all them tablets, it was just taking the edge of it.” (Natalie, 21). \nFurthermore, all participants experienced side effects from their medications, which affected them \nphysically and mentally. The painkillers predominantly caused issues with drowsiness and \nconcentration and could interfere with school and work productivity. Hormonal treatments caused a \nrange of significant side effects including spots, weight changes, mood swings, hot flushes, sickness, \n\n113 \n \nand anxiety. Aesthetic issues could alter a participant’s self-image, and even their mental health, and \nsome indicated that the level of symptom relief they got from the medical treatments was not worth \nit given these substantial side effects:  \n“I’ve got really hairy from my chin down to my neck, and my top lip… it’s really affecting my \nmental health actually.” (Sarah, 20). \n“I felt I was sort of replacing one pain for the other and as I said it didn’t seem to touch my \nlevel of pain very much so I felt that that’s when it was nearing the point where I was getting \nabsolutely completely fed up with everything, cos it was relentless and nothing seemed to be \nhelping me.” (Laura, 22). \nAll participants had undergone one or more laparoscopic surgeries. In addition to being performed for \ndiagnostic purposes, most participants also underwent surgical removal of endometriosis during their \nlaparoscopy. Prior to surgery, participants reported differing levels of information provision; some \nreceived adequate, clear information; some said they were just given a leaflet; and some had neither \nand often had to do their own research  online. A few participants said they did not understand the \ninformation they were given: \n“…well I had information on it  [laparoscopy], but it was almost really scientific information, \nand I felt as a patient that it needed to sort of be de -coded, as only doctors who had PhDs in \nthat would understand the information that was given. So I had to look everything up on \nGoogle, which I don’t think is fair either because I had to do all the research rather than them \ngiving me the information.” (Daisy, 19).  \nSome participants commented that their laparoscopy was their first experience of surgery, and so they \nwere often apprehensive. However, many participants reported that the surgery was not as bad as \nanticipated, and they generally reported a good level of care f rom the hospital staff. During post -\noperative recovery, many participants reported experiencing pain, particularly in their shoulders \nwhere they said the air was often trapped. Some participants stated they were not prepared for this \nlevel of post-operative pain, and that the surgery was more major than they expected.  \nMost participants recovered within a few weeks, although some took a while longer. During recovery, \nparticipants took time off school/university and work, and had to avoid certain activities like driving \nand walking too far. Once fully recovered, most of the participants who had undergone treatment \nduring their surgery reported improvement in their symptoms, particularly pain. Some exclaimed they \nwere “pain free”, or it was the “best” time in their lives. However, most participants stated that these \nimprovements were short -lived, as within a few months, their symptoms had returned, sometimes \n\n114 \n \nworse than they were before: \n“And it went away [after surgery], and all the symptoms were really good for about a year… I \nstill had periods and stuff but it wasn’t anywhere near as bad as it was, so it was almost back \nto normal. And then after a year it came back, but even worse than the time before, and I was \njust missing school and missing college...” (Hannah, 22) \nSome participants indicated feeling quite distressed when their symptoms returned; it was \nunexpected. Those still under the care of a gynaecologist went back to see them, but others said they \nhad to see the GP and start the referral process from s cratch. Treatment could therefore feel like an \nongoing cycle of referrals, investigations, and operations. Some worried about facing a future of this, \nand particularly about how it would affect their career. For Helen, who had undergone four \nlaparoscopies by the age of 22, this ongoing treatment cycle had already taken its toll, and she \ntherefore decided to have a hysterectomy: \n“So then I had to quit my job and then after that it was sort of like, I can’t let this take any \nmore of my life, I have to sort of  think of something more permanent because I can’t have \ndifferent surgeries and different horrible treatments every year.” (Helen, 24). \nDrastic measures such as this illustrate the importance participants place on obtaining adequate \ntreatment for their endometriosis. The focus of treatment for this sample was largely to manage their \nsymptoms, particularly pain and heavy bleeding, so that they could get on with their life like others \ntheir age. However, the treatment process was not straightforward, and part icipants often endured \nyears of experimentation with different treatments, as well as the side effects they produced. There \nwas a lack of permanence with the treatment options available to participants, and they therefore \nfaced an ongoing cycle of help-seeking in their futures. \n \nAlternative Therapies/Self \nIn addition to medical treatment, approximately half of the sample had tried alternative therapies, \nmost common ly reflexology, yoga, exercise, and dieting. Many stated that they would like to try \nalternative therapies , but that they were to o expensive : “I would really like to try things like \nacupuncture and reflexology to see if that helps, but all of that is quite like expensive really like if you \ngo lots of times.” (Olivia, 18), especially for teenagers: “I mean, normal 16, 17, 18-year-olds wouldn’t \nhave the money for that sort of thing ” (Anna, 21).  Reflexology was said to provide short term help, \nbut mainly with relaxation rather than pain.  Yoga and exercise were said to be beneficial, but \nparticipants struggled to do them when symptoms were bad:  \n\n115 \n \n“I do try to keep active but before like everyone was like “oh do yoga during your period”, like \nthere’s no way I could have done anything, so. But I do a lot of yoga now, so hopefully that \nhelps me” (Lucy, 22). \nSeveral participants had tried dieting, including the “endo diet”, and may had cut out alcohol. Dieting \nwas reported to have varying levels of effectiveness. Some believed it “massively” helped, and others \nsaid they had not noticed any changes. A few participants said dieting mainly hel ped with bowel \nsymptoms, including bloating. There were some barriers to dieting, including the cost and accessibility \nof the food, and the taste, with Daisy (19) exclaiming it’s like eating “rabbit food”. It could also pose \nadditional barriers to attending social situations: \n“I feel the thing that does make it difficult is in terms of being social and going to eat out \nsomewhere, because [the diet] is very very specific, being able to eat out somewhere is v ery \ndifficult. So that sort of cuts out like ‘oh, we’re all going to go for a meal’, and you’re suddenly \nin the position where you can’t like be in that social situation, or you feel uncomfortable in that \nsocial situation.” (Laura, 22). \nFurther discussion about the impact of limiting alcohol consumption is discussed below in Section \n6.3.4.2. \n \n6.3.3.3 Diagnosis \nIt took participants between 2 and 9 years to obtain their diagnosis of endometriosis after their \nsymptoms began (see Table 6.3). As found in previous research (Ballard et al., 2006) , this was \nattributable to both a delay in help -seeking after symptom onset, and a delay between seeking help \nand obtaining a diagnosis . In this sample, the initial delay was generally shorter than the latter, and \nwas largely attributable participants’ beliefs and awareness about their symptoms, as discussed in \nSection 6.3.1. \nTable 6.3: Participants' Delays Obtaining a Diagnosis of Endometriosis \n Mean Delay \n(years) \nRange \n(years) \nTotal Diagnostic Delay  \n(n=24) 5.2 2 - 9 \nLength of time before seeking medical help  \n(n=22) 1.0 0 - 4 \nLength of time from seeking medical help to obtaining a \ndiagnosis (n=22) 4.2 0 - 8 \n \n \n\n116 \n \nThe medical level delay was much longer in this group and included delays in both primary and \nsecondary care. The subtheme ‘Medical Encounters’ above provides insight into  factors behind this \ndelay, including being dismissed/having symptoms normalised, having multiple GP appointments \nbefore being referred for investigation, and trying various/numerous types of medical treatment. \nSome believed their age was also a factor in these dismissals, and they assumed, or were told, that \ngynaecologists did not want to perform invasive procedures on young women. In addition, some \nparticipants stated that they were misdiagnosed during this time. The most common diagnosis given \nwas IBS, and as a result, participants were told to change their diet, were sent to a nutritionist, or even \nhad to endure invasive investigations such as colonoscopies. These misdiagnoses not only added to \nthe delay, but sometimes incurred financial costs as well. K ate summarised her experiences with \nmisdiagnosis: \n“…when I was on the pill and I was having symptoms like feeling sick and having problems with \nmy digestive system, they diagnosed me with irritable bow el syndrome, and said ‘ you’ve got \nirritable bowel syndr ome so you need to change your diet’ . So I changed my diet, I tried \neverything and they said ‘ well what’s the food that trigge rs you’ and I said ‘ I don’t have a \ntrigger food, I’m just always ill’ , and they said ‘well you have to have a trigger food if you’ ve \ngot IBS’, and I was like ‘ well I don’t, I don’t kno w what to say, I don’t have one’ . Um, so they \ncontinued to say that I had irritable bowel syndrome until I went to them and said “the pill’s \nnot working, I think I have endometriosis”. (Kate, 18) \nSome participants only obtained a diagnosis after seeking private medical care, or through undergoing \nemergency surgery. Participants expressed feelings of annoyance and anger about their diagnostic \ndelays, which took up to 9 years. A small number of participants, who obtained their diagnosis in under \n7.5 years (i.e. the national average: Endometriosis UK, 2011), commented that they felt almost “lucky” \nto have received a diagnosis in this time, despite the fact that it still took them a number of years:  \n“About 4 or 5 years [to diagnosis]. Which I know is quite quick compared to some people.”  \n(Eve, 23).  \nThe diagnostic delay played a significant part in participants’ narratives, and many indicated that they \nthought that addressing this delay was a key priority in endometriosis care. Jessica, who waited 6 years \nfor a diagnosis, stated she specifically wanted to be involved in this research to highlight the issues \nwith receiving a diagnosis: \n“The reason why I contacted you was to show how long of a process it’s been for me to get a \ndiagnosis and how much pushing I’ve had to do like with the gynaecologists and the doctors \n\n117 \n \nto actually get the answers, and like the help…” (Jessica, 21). \nAll participants received their diagnosis because of laparoscopic surgery, and the majority were given \ntheir diagnosis immediately after the surgery, when just awoken from the anaesthetic. At this time, \nparticipants described themselves as feeling “out of it”, “drugged up” and “dizzy”, and were therefore \nunable to fully process the information given. In addition, many did not have a post-op appointment, \nand therefore stated they never received adequate information or an explanation of their diagnosis. \nA small number of participants were not actually given their diagnosis, and only found out much later. \nParticipants described feeling bewildered and frustrated about these encounters, as illustrated in this \nquote: \n“I was kind of told it went fine, they found some endometriosis… but I was really drugged up, \nbecause I had only come around about an hour or so before … and my mum hadn’t actually \narrived at that point, so I was trying to take everything in while I was still quite drugged up, \nwhich probably wasn’t the best time to have that conversation with me to be hone st. So that \nmaybe could have been handled a bit better.” (Alexandra, 20). \nWhen participants obtained their diagnosis, the majority described an initial feeling of relief; that after \nmany years, they finally had an explanation for their symptoms. Many expre ssed reassurance that \nthey were not “crazy” after previously questioning the legitimacy of their symptoms, and some felt \nangry that they had been made to feel that way, or that they waited so long for a diagnosis. Having a \ndiagnosis enabled participants to explain themselves more easily to others, and to access appropriate \nsupport. In numerous instances, participants described their relief at diagnosis to be short lived, as \nthe realisation set in that endometriosis is an incurable condition that they would have to manage for \na long time. Kate’s quote is representative of the participants’ narratives about diagnosis:  \n“Relieved, but also quite scared and nervous. I was relieved cos I had a name to something… \nand relieved that it wasn’t me like it wasn’t me just in my head making all this up… and no one \ncan disprove me now, no one can turn around and say ‘well you’ve just got IBS’ or ‘you just \nneed painkillers’. I can actually say ‘no, I do have a condition and this is what causes this’. And \nalso so I could a ctually justify when I wasn’t feeling well that I didn’t have to do anything… I \ncould say ‘Well I’ve got a condition where it makes me unwell, I can take time for myself’. So \nyeah, I was relieved but also scared cos it doesn’t go away, it never gets better and I knew that \nthis would be a long term thing that I would have to deal with for the rest of the time that I \nam reproductive, and maybe even after that I don’t know. So yeah, it was scary.” (Kate, 18). \n \n\n118 \n \nSummary \nA significant motivation for participants when help-seeking was the pursuit of a diagnosis; they wanted \nan explanation for their symptoms. However, the journey to obtaining a diagnosis was often long, \nobtained after years of varied encounters with medical professionals, and the trial and error of \ndifferent treatments. Their experience with healthcare providers was often negative, as they were \nsubject to dismissals, poor communication/information, and misdiagnoses. The eventual receipt of a \ndiagnosis of endometriosis was described as somewhat “bitte rsweet”, because although they had a \nname for their symptoms, it was something that could not be cured.  \n \n6.3.4 Teenage Life: ‘Missing Out’ \nThis theme describes the various impacts of endometriosis on the lives of the AYW who participated. \nAll participants noted that interruption to daily activities, such as school, socialising, and sport, caused \nthem to feel as though they were missing out on things that others their age were doing.  In addition, \nwhile living with endometriosis, they found their relationships were both strained and strengthened; \nthey relied heavily on their families, but often missed out on forming/maintaining friendships and \nintimate relationships.  \n \n6.3.4.1 School and Work \nAll participants stated that they missed school and/or university during their teenage years, because \nof debilitating symptoms, doctors’ appointments, or surgery. Absences ranged from a few days here \nor there, to a week every month, or even weeks or months on end. Some stated that when they did \nattend, it was difficult to concentrate due to their pain or fatigue, and some were extremely paranoid \nabout ‘leaking’ (i.e. bleeding through their garments during menstruati on). As a result of their \nabsences, participants fell behind on schoolwork, but also missed out on the social aspects of school \nlife, and even weekend activities, which were arranged by friends during school hours: \n“…I had a lot of time off school, which o bviously doesn’t just affect your work and grades but \nit’s your social life, and emotional wellbeing, and (p) everything really.” (Lynsey, 21). \nAs illustrated in the above quote, most participants reported that their absences also affected their \ngrades. For many participants, endometriosis caused disruption at crucial points during their GCSE and \nA-Level years, which affected their ability to revise for and sit exams, sometimes missing them \n\n119 \n \naltogether. For some participants this caused a knock -on effect, wh ereby missed exams meant an \nextra year at school, and therefore delays in moving forward in life: \n“And my original plan was to apply to university for this year, couldn’t do that with 2 A levels, \nso that meant I had to take a year out, and I have to do another one this year, before I can go \nto university. So that’s one of the big ways it’s impacted my life, everything had to be pushed \nback.” (Alison, 19). \nSome participants had experience of paid employment at the time of interview and noted significant \nimpairment. Many reported missing work, or getting sent home, typically due to pain or exhaustion, \nand some participants stated that they had lost jobs due to endometriosis. Some had found that \nendometriosis restricted the kind of work they could do; they were unable to do particularly physical \nwork, and some opted to choose jobs in which they could work from home or which were part time. \nAs a result, participants reported concerns about a limited career outlook and restricted income: \n“I struggle to get a job, no one wants to know… Just, I’ve got nothing at the moment, I’ve got \nno money and no work, I don’t go out anywhere cos I’ve got nothing to go out with.”  (Sally, \n22).  \n \n6.3.4.2 Sport and Social Life \nAll participants reported that at some time, endometriosis had significantly impacted their social life. \nWhen in their younger teenage years, they missed weekend social activities and struggled with things \nlike sleepovers, due to pain and fear of leaking. As they got into their later teens, many participants \ndescribed the difficulty of attending nights out with friends, which was further complicated by the \ntendency for alcohol to be a trigger for their symptoms. Missing out on nights out was a key factor in \nparticipants’ descriptions of being ‘unlike others their age’: \n“I’d say it definitely has affected my social life, because there’s weekends where I’ve had to \ncancel plans with my friends, and - especially as I turned 18, and going out clubbing was the \nnext best thing, but obviously cos of the pain, I couldn’t go because I couldn’t physically move \nfrom my bed.” (Natalie, 21). \nThis was particularly noted by participants who were at university, who felt that nights out were a key \naspect of university life. Some also mentioned the interruption to their social life caused by bloating. \nHaving to wear “baggy clothes”, which none of t heir friends wore, or looking “six months pregnant” \nwere cited as reasons that participants might stay home and miss social activities. Participants stated \n\n120 \n \nthat interruption with social activities increased feelings of isolation, and sometimes damaged \nfriendships; they said that friends would not ask them out anymore: \n“…alcohol is a huge thing that is a really bad for your endometriosis, so I really don’t drink as \nmuch as other people at all, so I don’t ever get invited out anywhere or anything… but I mean \nI miss out on so much with my friends because of that, and it’s pretty shit if I’m honest with \nyou, I can be like a bit invisible sometimes.” (Emma, 22) \nAgain, friends’ lack of awareness of endometriosis was reported to be an issue, because participants \nwere unable to explain why they could not attend social events. This was particularly so pre-diagnosis, \nwhen participants stated that friends would question why they weren’t coming out, as it was “only a \nperiod”. \nAnother area of life in which participants reported to miss out was sport and physical activities. Most \nparticipants said they often missed PE at school, due to either pain or heavy bleeding. Many who had \ntaken part in sports prior symptom onset found that their continued participation was limited; either \nhaving to give up altogether or stop until their symptoms were under control. For some, this meant \nmissing out on hobbies, or having to forgo playing at a highly competitive level. Sport was also viewed \nby some as a social activity; it was something they did with their friends, or they participated in a team \nsport like netball. As a result, by foregoing sporting activities, it caused additional impact on \nparticipants’’ social lives. The following quotes highlight some of these issues: \n“I used to be really sporty actually. I used to like run in stadiums and stuff, up until about the \nage of 15. I did kind of want to take that further, and that was going to be my career, but \nendo’s kind of put a stop to that.” (Louise, 18). \n“Before I had the really bad pain I used to do running, I used to go to dance classes, and do \nrock climbing and do all these great adventurous things, and then when I got this pain I just \ncouldn’t do any of that which was really rubbish. Cos I used to do it with my friends, I used to \ngo out rock climbing as a social event, and I just couldn’t do that anymore which wasn’t great.” \n(Daisy, 19). \nEndometriosis caused an impact on many other aspects of participants’ lives, such as driving and going \non holiday. Due to the vast range of interference as illustrated in this theme, many participants \ndescribed endometriosis as having a largescale effect on their lives, for example stating that it “affects \neverything you do”, or that “you can’t do anything”. Further complicating this was the unpredictable \nnature of endometriosis; most participants stated they never knew when symptoms might arise, \ntherefore impeding plan -making. In addition, they always had to be prepared in case symptoms \n\n121 \n \nstarted unexpectedly. Olivia sums up these issues: \n“So I’m in a position now where I’d literally say it’s literally taking over my life, cos I can’t do \nanything without thinking about being in pain or ‘oh, have I got paracetamol, oh have I got co-\ncodamol if this happens, oh have I got this, have a got a pad in case I start bleeding, have I got \nthis drug, this drug, this drug’, that kind of thing. And it’s just, urgh, frustrating.” (Olivia, 18). \n \n6.3.4.3 Relationships \nThrough living with endometriosis, participants described th eir relationships as being both strained \nand strengthened. Key relationships were those with family members, friends, and intimate partners. \nParticipants noted strain on all relationship types, which they believed was largely because others did \nnot underst and the severity of their symptoms, or the nature of endometriosis. Adding further \ncomplication, participants said they found it difficult to explain to people, because they did not fully \nunderstand it either. There was a tendency for others, particularly friends, to try to downplay their \nsymptoms, saying things like “we all have period pain”. They were therefore described by some to lack \nappropriate sympathy, and to get annoyed when participants cancelled plans: \n“…obviously relationships were strained, both with my family and my friends, because more \nfor the fact that they wouldn’t really understand, because there’d be times where say there \nwas a family event coming up, or my friends wanted me to come out at the weekend, but I was \nliterally bed  bound, and they wouldn’t get that, they wouldn’t understand that I couldn’t \nphysically move my body because my pain was so intense…” (Natalie, 21) \nSome participants experienced mood swings, which they said their family often bore the brunt of \nbecause they were closest to them. Strains on family relationships did not usually result in any long -\nterm damage though, and many said their families were very supportive. However, friendships were \nnot always so resilient; many participants stated they lost friends w hile living with endometriosis, or \nfound it difficult to make and maintain new friendships. Some lost friends pre -diagnosis, when they \ndidn’t have a concrete reason for missing social events, and were embarrassed to divulge issues with \ntheir periods: \n“I think the big thing for me as well is that I didn’t have a diagnosis so I could never say to my \nfriends “oh guys, it’s going to flare up my endometriosis”, so I’d just be like “I’m just in pain \nand I don’t really want to come out” …and obviously to them that  was like “oh Olivia doesn’t \nwant to see us”, “what’s she doing that’s more important” kind of thing. Yeah so I’m definitely \nquite isolated now I would say, because of it.” (Olivia, 18) \n\n122 \n \nIn contrast, some participants mentioned the strengthening effect of e ndometriosis on their \nrelationships. Some spoke of close friends, who showed remarkable understanding and support, and \nwho stuck by them throughout their journey. They indicated that because of this they would be \n“friends for life”.  Family relationships we re also strengthened, particularly due to their support in \nseeking treatment and a diagnosis: \n“I think it’s made me like, love my parents more because they really fought for me and they \nbelieved in me when no one else would.” (Lucy, 22) \nMany of these points were also raised when talking about relationships with intimate partners, who \nshowed varying levels of understanding and support. However, these relationships were also affected \nslightly differently, often due to their sexual nature. Many participants experienced dyspareunia, and \nwere therefore unable to engage in sexual activity as often as they or their partner would have liked, \nwhich they said caused “tension”, “arguments” and “frustration”. In addition, due to symptoms such \nas pain, some participants stated that they often did not feel ‘in the mood’ for sex. These issues caused \nrelationship breakdowns in a few cases, or for participants to avoid relationships. Participants often \nsaid they attempted to partake in sexual activity because they felt guilty , but in doing so, sometimes \ntheir partner then felt guilty because they were in pain. The extent to which this symptom strained a \nrelationship was usually mediated by how supporting they thought their partner was. \nIn addition to the strain on relationship s, some participants worried that their endometriosis had a \ndirect impact on those around them, particularly family. Reasons for this included having to see the \nparticipants in so much pain, or having to sacrifice things to help them out. Therefore, endometriosis \ncould be described as something that not only the participants themselves had to live with and adapt \nto, but those close to them as well.  \n \n6.3.4.4 Coping and Resilience \nDespite the widespread impact of endometriosis on teenage life, many participants communicated a \nnotion towards resilience, and not letting the endometriosis define them. Participants often stated \nthat they tried to just “get on with it”  as much as they could, or that they were “determined” to \nsucceed despite their endometriosis. In a few cases, participants described a sense of acceptance; that \nthis was their life now and they had to try to live as normal a life as they could: \n“…I say I don’t want it to be me, and it’s not, it’s just something that I have to deal with, but \nI’ve never known anything else, so that’s just what it’s like.” (Claire, 21).  \n“I often go out with a hot water bottle on my belly. I’ll go to the pub with a hot water bottle \n\n123 \n \non my belly now days, cos it’s either that or I don’t socialise, I don’t have any friends, do you \nknow what I mean…” (Emma, 22). \n \nSummary \nThis theme illustrates the extensive impact of endometriosis on the lives of the AYW in this study. \nThey missed out on many aspects of life including school, sports, and relationship building. The \ninterference caused to their lives was not only felt on a daily basis, but could have repercussions that \nwere long-lasting. However, many did not want their lives to be taken over by endometriosis and tried \nto live as normal a life as possible. \n \n6.3.5 Support and Information: “Nothing for my Age Group” \n6.3.5.1 Support \nMost participants stated that their mothers were a key source of support, who were often alongside \nthem throughout their journey. As described in Section 6.3.1, mothers were said to provide both \npractical and emotional support, and were instrumental in their help-seeking process. \n “…she [my mum] just talks through it with me and just gives me a hug. Um, if I need her she’ll \ncome and get me or she’ll look after me and (p) yeah, she’s been there all the way with me, so \nthat’s good.” (Hannah, 22). \nFathers were discussed to a lesser degree, but in general were found to be a valuable source of \nsupport, particularly providing practical support, i.e. shopping for products and researching treatment \noptions. Participants stated they were generally quite open about their condition with most family \nmembers and frequently mentioned grandmothers and siblings. A small number of participants had a \nfamily member with endometriosis, who were also described as supportive. \nOver half of the participants were in a relationship at the time of interview, many of whom mentioned \ntheir partner as a source of support, again providing both practical and emotional support. Many \nparticipants said they were “lucky” to have f ound someone so supportive, as they had often had \nformer partners who had not been understanding. Some described that their partner’s support and \nunderstanding was the result of them being there and seeing the participant’s struggles first-hand. \nA final pa rt of the immediate support network described by some participants were their friends. \nHowever, they often stated that friends had not always been supportive, particularly when they were \n\n124 \n \nyounger and had not received a diagnosis, as friends were often unabl e to grasp their level of pain. \nSome participants said they had therefore lost friends, and subsequently found it difficult to turn to \nfriends for support. Most participants only discussed telling close friends. Those who did not seek \nsupport from friends often said it was because they didn’t think their friends would understand, or \nthey didn’t want to be a burden. \n“I wouldn’t really talk to any of my friends about it, just because they don’t really understand \nit, and they’re not the most supportive people about it...” (Kate, 18). \nA small number of participants stated that they found it difficult to turn to those they knew for \nsupport. For some, this was because of the lack of awareness of endometriosis by those around them, \nwhich made it hard to explain the  condition to others. Some stated that they felt like there was not \nreally anything others could do anyway, so why bother. \nMany participants also received support from others with endometriosis. Participants mainly accessed \nthese connections online through social media, sometimes because face -to-face groups were \nunavailable in their area. Participants discussed the pros of communicating with others with \nendometriosis, particularly their ability to understand what they were experiencing, and to provide \nrelevant support and information. An additional benefit of online support was the ease of access; \nthere is always someone there to talk to. Through communicating with others with endometriosis, \nparticipants often said they felt less alone. Some of these points are illustrated in the following quotes: \n“I think the people on the Facebook page, they know how it feels and I kind of, I take comfort \nin them, cos you know what there, like they’ve kind of ex perienced exactly what you have. ” \n(Eve, 23). \n“I know that if I want to I can always post and ask a question to one of them on Facebook or \nwhatever, and people will respond. Everyone’s really nice, everyone gets it, so you don’t feel \nquite so alone.” (Alexandra, 20). \nWhile support from others with endometriosis was largely positive, participants also noted some \nassociated cons. One issue reported was the sheer size of the community, and that participants \ntherefore had difficulty in deciphering through many c onflicting opinions. Another issue reported by \na small number of participants was the tendency for group discussions to be negative, which could \nsometimes bring them down. In addition, people talking about having multiple surgeries, or struggles \nwith infertility, was also a source of discomfort, as participants said it invoked fear and worry: \n“…I find that talking to people with endo really scares me more than anything, because I’ve \nonly met people that can’t have children…” (Emma, 22). \n\n125 \n \nA significant number of participants stated that some of these issues were in part due to the older age \nof most of those using endometriosis support groups. They felt that their concerns were very different \nto those a bit older than them, who had issues such as infertility, o r juggling endometriosis with \nlooking after children, and therefore much of the support available was irrelevant to them. This finding \nwas not confined to support groups alone, as most participants stated that support in general was \nlacking for their age group. This quote summarises these points: \n“…but there’s not really any support groups specifically for people of my age. I mostly see \npeople who are like 20s, 30s, 40s. There’s no one really there who is 18 and has got diagnosed \nrecently. It just feels quite isolating, especially in the support groups, there’s no one there really \nfor me. I don’t mind speaking to someone that’s 20 or 30 but they’ve got different problems in \ntheir lives, they’ve got different e xperiences. When I say to them ‘ well I just don’t  feel great \nand I want to g o out and party with my friends’ , it’s very diffe rent from them who are like ‘ I \ndon’t feel great, and I can’t go to work and I can’t support my child’. It’s different.” (Kate, 18). \nIn addition, some participants noted that there was a lack of support for people their age when going \nthrough the diagnosis process. This was partly because it was a little-known condition, and therefore \nthose around them, for example schoolteachers, were unable to guide them through the process.  \nFinally, some participants said that they would have liked some support about how to explain their \ncondition to others, particularly new boyfriends. \nAn important part of living with endometriosis was having a support network who could provide \npractical and emot ional support at times of need. Support networks could be classified as those \nimmediately known to participants, i.e. family, friends, partners etc., and those who were more \nremote, such as people at online or face -to-face support groups. While participant s drew on a wide \nrange of support, they felt that support targeted to their age group was missing. \n \n6.3.5.2 Information \nParticipants sought information at many stages during their journey, such as after their symptoms \nbegan, during the medical process, and after r eceiving their diagnosis. The internet was the most \npopular source of information and was used by almost all participants. They stated they often used \nGoogle to search for information, and looked on the Endometriosis UK and NHS websites. Many \nparticipants said that Endometriosis UK was the most “useful” source of information, and that they \ncould trust the information they provided.  \nParticipants also described the use of a range of online platforms for information, including YouTube, \n\n126 \n \nInstagram, Facebook, and Ted Talks. This information was mostly provided by others with \nendometriosis, and one of the reported advantages of such was tha t it was from people who had \nexperienced it, as compared to doctors who had not. While this was useful, some questioned the \ntrustworthiness of information from this source. Some participants stated that websites, such as \nEndometriosis UK, were useful for m ore factual information on symptoms and treatments, but \ninformation through support groups/social media provided more on the emotional aspects of \nendometriosis, and what it’s like to live with it day to day: \n“…not everything is listed on websites… things l ike emotions and your mental state, that’s \nmore on the support groups than anything else because the NHS doesn’t cover it, it only covers \nsymptoms and actually what happens.” (Alison, 19). \nIn numerous instances, participants exclaimed that there was not en ough information targeted at \ntheir age group. They said there was a lot of information about issues such as fertility, but this was \nless relevant for people of their age, as they wanted to know more about living with endometriosis as \na teenager:  \n“…it’s more sort of catered towards people having fertility issues and things, and you know at \nthis age again, you don’t really want to think about that.” (Rebecca, 21). \nSome participants reported that they had received information leaflets from medical pr ofessionals, \nand a minority stated they would turn to medical professionals if they wanted more information. \nHowever, many said they had to search for further information themselves, because they had not \nreceived enough from medical professionals. In addit ion, the information they did receive from \nmedical professionals was sometimes described to be difficult to understand. \n \nSummary \nHaving adequate support and information was key to managing endometriosis, however, most \nadolescents felt as though the support and information available to them was not age appropriate. \n \n6.3.6 Emotional Wellbeing: ‘Not Just a Physical Thing’ \nEndometriosis affected many aspects of participants’ lives, and as such, had a strain on their emotional \nwellbeing. They described impacts on their mood and mental health, diminished confidence and self-\nesteem, and feelings of isolation and loneliness. Therefore, despite the physical nature of \n\n127 \n \nendometriosis, the disruption it caused to lives of AYW meant it was often experienced on an \nemotional level as well, as summarised in this quote: \n“So many people think about the physical effects, but no one really talks about the social and \npsychological effects that it has on people.” (Daisy, 19). \n \n6.3.6.1 Emotional Health \nMost participants discussed the impact of endometriosis on their emotional health, often using words \nlike “sad”, “upset”, “fed up”, “miserable”, “down”, and “worried”, as well as describing behavioural \ndisplays of emotion like “crying”. These emotional impacts were brought on by several factors. Often, \nthey were a response to experiencing severe symptoms, or the impact of those symptoms on their \nlives. Participants expressed sadness, anger, and frustration about the medical journey; at receiving \ninappropriate care, lack of improvement in symptoms, and at the receipt of a chronic diagnosis. Many \nexperienced emotional impacts as a side effect of the hormonal medications they were taking. These \nquotes further illustrate these emotional impacts: \n“Um, and the pain, like I can’t – I took a week off school every month, I mean like it was severe, \nand I would be curled up in a ball screaming and crying, um non-stop…” (Emma, 22). \n“…especially on the coil you get really emotional, like I notice I get really emotional and really \nupset really easily.” (Kate, 18). \n“As it’s gone on, the past year, knowing that that’s what I’ve got, I just feel sad, and it’s \nupsetting, and more like, yeah it’s just like, it is life changing I suppose, and just fed up.” (Eve, \n23). \nMany participants also described more serious emotional impacts, affecting their mental health. The \nmost reported issues were anxiety and depression, feelings of which were discussed by numerous \nparticipants. It was unclear as to the extent of clinical depression and anxiety in this sample, however \nsome participants did state that they had been diagnosed and/or treated for either. A small number \nof participants illustrated how severe the impact on mental well-being could be: \n“I did try and – I took an overdose, because of the pain and everything, it was just getting me \ndown. I’ve had my low patches, and depression.” (Sally, 22). \n“I remember saying when I was on holiday actually… I was laying on the bathroom floor, crying, \n… and I just said [to my mum] ‘do you know what, if there was like something right now that  \nwould just put me to sleep I’d make you do it’, because the pain was just (p) – the thoughts it \n\n128 \n \nmakes you think are really scary actually.” (Sarah, 20). \nParticipants often said they struggled to get to grips with these emotional issues, which some said \ncould spiral out of control. Furthermore, some participants reported that they would have liked some \nform of counselling to deal with these issues, however many struggled to obtain referrals for this \nadditional support. Some implied that treatment was often aimed at the physical aspects of \nendometriosis, but that it was more than just a physical condition. \n \n6.3.6.2 Perceptions of the self \nParticipants almost unanimously reported that endometriosis had an impact on the way they viewed \nthemselves. The most common issue  conveyed by participants was a lack of self -esteem, resulting \nfrom changes in their physical appearance. These were often a result of treatment, for example weight \ngain, hair growth, and acne, as side effects from hormonal treatments, and scarring after s urgery. In \naddition, many participants experienced bloating as a symptom of their endometriosis, which was \noften cited to affect self-esteem:  \n“I feel like, cos I get really bad bloating from it as well, I just feel like I look disgusting, like if I \nwant to wear something, I just feel like it’s not going to look very nice and things like that \nbecause (p), I look huge.” (Zoe, 19). \nAs this quote illustrates, changes in physical appearance were cited to restrict participants clothing \nchoices. They often reported dressing in “baggy” clothing, and not being able to wear “tight”, “skinny” \nor “revealing” clothing like others their age do, and therefore viewed themselves as ‘different’. In \naddition, low energy levels caused a lack of motivation to make an effort with their appearance, which \nin turn increased their negative view of themselves. Some participants said that this impacted on their \nsocial activities, as they would avoid going out when they felt like that. \nA small number of participants indicated feelings of sexual inadequacy. This could be in part due to \nclothing restrictions; for example, Emma stated that her heavy bleeding meant she had to wear big \nknickers, and therefore didn’t feel “sexy”. For most howe ver, these feelings arose due to their \nexperiences with dyspareunia. Some stated they felt embarrassed that they were unable to have sex, \nor that they should be enjoying it but weren’t, especially at their age. These feelings of inadequacy \nimpacted on participants’ self-esteem. These quotes illustrate some of these points: \n“It [dyspareunia] kind of makes me feel a bit of a failure, because you know, it’s the most basic \nthing that we’re meant to do, and my body isn’t willing to do it…” (Meghan, 23). \n\n129 \n \n“…I didn’t want to be like you know, 21 years old and have like problems having sex. That’s not \nwhat you should be, what society thinks you should be doing when you’re 21.” (Claire, 21). \nParticipants also described a loss of confidence in themselves and their abilities, such as being able to \nplay sport, and socialise. They worried that cancelling plans and not going out would make them lose \nfriends. In addition, they were hesitant to tell people why they had to cancel, either due to \nembarrassment about the condition/symptoms, or in case they weren’t believed. Participants often \ndescribed several years of having their symptoms not believed by others, including friends, teachers \nand especially doctors, and therefore many said they began to doubt themselves. Pa rticipants said \nthey questioned whether they were being “dramatic”, “hysterical” and “psychotic”, or whether they \nwere just “weak” and unable to deal with their periods. This quote illustrates these feelings of self -\ndoubt: \n“I feel that with all the problems that I’ve been experiencing, because of my past experiences \nof people you know, presuming that you’re making something up  or you’re being hysterical \nor overreacting, it’s hard not to think that yourself. When you’re experiencing these symptoms \nit’s hard not to think ‘oh maybe I am just making this all up…’” (Laura, 22). \n \n6.3.6.3 Isolation \nA small but significant subtheme was the isolation reported by participants. Some felt alone because \nthey found it difficult to talk to others about their symptoms. Others often  did not understand \nendometriosis because the symptoms were invisible, and there was a lot of overlap with periods. In \naddition, participants reported that they often had to miss out on social events, and as a result could \nend up feeling quite isolated.  \n“When I was really ill when I was 17, my friends would ask me to go out and I’d just have to \nsay ‘no, I’m just not well’. And then that isolates you more, so then you feel more alone… and \nno one else – you can’t really explain it to anyone else cos as soon as you explain it they say \n‘well I have bad pain when I’m on my periods’…” (Kate, 18). \nAs illustrated in this quote, others’ lack of understanding or awareness of endometriosis could \ncontribute to feelings of isolation. Participants stated that talking to others with endometriosis, who \nunderstood the condition, made them feel less alone: \n“I like to read what people are posting and it’s nice to know that other women are in the same \nsituation… it helps to know that other people are experiencing it, cos when y ou’re the only – \nwhen you don’t know many people who have it, um it can feel quite isolated, cos no one really \n\n130 \n \ngets it…” (Alison, 19). \n \nSummary \nAs this theme illustrates, endometriosis caused much more than just physical impairment, as it also \naffected many aspects of participants’ emotional health and wellbeing. It disrupted their self-esteem \nand made them feel different to others their age. \n \n6.3.7 Future: ‘Uncertainty’ \nAll participants indicated some concern about their future due to endometriosis. Many worried about \ntheir long-term future, questioning their fertility, relationships, and employment. Some had said they \ndid not like to think too far ahead, and just took ea ch day as it came. One of the issues when \nconsidering their future was the uncertainty associated with endometriosis; that they did not know \nwhen their symptoms might return, or how it may impact their lives. \n \n6.3.7.1 Fertility \nThe biggest concern participants had about their futures, expressed almost unanimously, was whether \nthey would be able to have children. Participants stated they were “worried”, “anxious” and “scared” \nwhen thinking about their fertility. A small number of the younger participants reported that while it \nwas a concern, they did not want to think about it too much yet, because they were so young. Some \nsaid that as they were getting older, it had become more of a worry. Many participants stated that \nthey had not realised how important their fertility was to them until it became something that might \nbe taken away from them: \n“…I don’t know I suppose being told ‘oh, you might struggle to get pregnant’, like a few years \nago that wouldn’t have bee n an issue for me, I’d be like ‘oh, I don’t want kids an yway’, but \nnow, now I’m getting older, and the potential of me maybe not being able to have a child, \nthen yeah, it is quite upsetting really, it does play on your emotions.” (Jessica, 21). \nOne of the key issues reported about fertility was the uncertainty;  participants had no idea whether \ntheir fertility was affected or not. Many said they had asked their specialists and had been given \nvarying responses. Some were told that they did not have endometriosis on key reproductive areas, \nsuch as their ovaries or fallopian tubes, and so their fertility should not be affected. Others had \n\n131 \n \ndifficulty in receiving much advice, or were told to worry about it in a few years’ time, which they \nassumed was due to their age: \n“So I always try and talk to them [doctors] about it but they just won’t talk to me about it, \nthey’re like ‘oh well, think about it in 10 years, think about it in 10 years’.” (Olivia, 18). \nDue to the uncertainty surrounding their fertility, many participants stated they needed to re-evaluate \nfuture plans. There was a common narrative amongst such participants that ideally, they would like \nto have established their career before having children, however they were now unsure if this would \nbe possible, and they may have to have children earlier than planned. Two participants, who were told \nby their specialist after surgery that it would be a good time to get pregnant, decided to act on this \nadvice; one had already had two children at the time of interview, and one was in the process of trying. \nBoth stated this was earlier than they would have anticipated in their life plan. This quote summarises \nthese points: \n“I expected to have children when I’m like, really late 20s, 30s, you know I wanted to get my \ncareer set before I have children. But it’s made me really t hink that maybe I don’t have that \nchoice anymore.” (Kate, 18). \nSome participants indicated that they had already considered the measures they may have to take to \nhave children, such as IVF, adoption, egg freezing, and surrogacy. In addition, some stated th at they \ncontemplated their fertility when making treatment and lifestyle decisions. \n \n6.3.7.2 An ongoing battle: Future surgeries and treatment \nParticipants had all tried a range of different medical and surgical treatments for their endometriosis, \nhowever, the relief they provided was rarely long term. This, coupled with the lack of cure for \nendometriosis, meant that participants viewed a lack of  permanency in the treatment options \navailable, and were concerned about their ongoing need for future treatment, and in particular future \nsurgeries: \n“…so I was thinking ‘I do not want an operation every 2 years’, or for it to be so bad that the \npain comes back every 2 years, you know , I want to have one and it’s done and it’s gone  …I \ndon’t think I can necessarily deal with going through this same cycle every few years. ” \n(Gemma, 19). \nA small number of participants stated that they wished to consider more permanent treatment, such \nas a hysterectomy. However, this may mean either not having children, or waiting until after they had \n\n132 \n \nhad children. One participant described how difficult a decision this was:  \n“I do want children but I don’t really want to live with the endo, so it’s a double edged sword. \nBut it concerns me that the older I get, the less the chances are [to have children] anyway. So \nI think that’s kind of what sort of pushed me towards the hysterectomy idea in the first place, \nyou know it could be 10 to 15 years before I’m in a place to have children or starting to consider \nit, and you know, leaving it for that long it could be substantially worse”. (Megan, 23).  \nIn addition to the potential need for multiple surgeries in future, a small number of p articipants also \nworried that more surgeries meant that more scar tissue would develop, and the worsening therefore \nof symptoms. Some also reported concerns over the long-term effects of taking their medications. The \nunpredictability of endometriosis created much uncertainty about future treatments: \n“I think it’s hard to tell really, cos you never know when it’s going to flare up, so I think it’s just \na case of waiting to see when the next thing you try isn’t going to work anymore.”  (Jessica, \n21).  \n \n6.3.7.3 Intimate Relationships \nA small number of participants were concerned that future friendships might be affected by \nendometriosis, largely because they doubted others would understand. However, the main \nrelationships that participants were concerned about were intimate relationships. This was mostly \ndescribed by participants who were not in a relationship at the time of interview. They were worried \nthat they would not be able to find someone who was understanding, or who would be willing to take \non someone with a chronic condition: \n“…I feel like I’m just sort of a little bit harder to cope with than someone who wouldn’t have \nendometriosis. So there is that worry that would someone ever bother with me because I’m - I \nfeel like I’m a trial to cope with.” (Laura, 22).  \nSometimes these fears stemmed from past relationships, some of which had ended due to \nendometriosis. A particular concern was issues with intimacy, due to pain/dyspareunia, which \nparticipants said they would find difficult to explain to someone new. These concerns, as well as the \nperceived difficulty of finding someone understanding, meant that they were hesitant to “bother” \nwith future relationships. These points are illustrated by Alison, who stated that her ex-boyfriend had \ncheated on her because she could not partake in sexual intercourse: \n“I don’t have relationships, since what happened with my last boyfriend , I don’t let myself \n\n133 \n \nconnect with people… I’m worried that there won’t be anybody that will understand, or will be \nwilling to put up with it, and I worry about telling men. How are you meant to tell somebody \nthat you can’t have sex because it’s painful, and it’s (p), I just don’t bother, I just don’t let \nmyself connect with somebody and like them, because I know that this has a massive impact \non a relationship. And it’s not worth getting into something that’s going to (p) end eventually \nbecause they can’t cope with it.” (Alison, 19). \nAs this quote indicates, participants also reported apprehension about how and when to tell a future \npartner about their condition. In addition, they worried about telling them they might not be able to \nhave children. \n“…well if I have a partner and I’ve got to tell him ‘I might not be able to give you a child one \nday’, that could affect the relationship that you have.” (Jessica, 21). \n \n6.3.7.4 Education and Career Outlook \nMost participants had already experienced interruptions in their work or education, and as such were \nworried about further impact in the future. Those still in education w ere concerned that they might \nnot be able to complete the course they were on, especially if they had experienced setbacks in the \npast. However, the main concerns centred around their work and career. A small number of \nparticipants thought that their symptoms of endometriosis might restrict the type of work they could \ndo: \n“I used to work in a care home, and that on top of endo was just no good, it was heavy work – \nwell not heavy work but it was just too much for me to cope with and having that. So I’m \nlooking for more like a reasonable work place instead of one that’s going to have an impact \nwith it.” (Sally, 22). \nIn addition, some participants stated concern over both securing and sustaining a job. They worried \nabout having time off due to their symptoms an d/or surgeries, and whether employers would be \nunderstanding about their condition. Again, a key issue in participants’ accounts of future work and \ncareer was the uncertain and ongoing nature of endometriosis: \n“…last year I lost like a month of my life from recovery, so then it makes you think ‘ what if I \nwant a career, is that going to affect my career because every few years I’m going to have to \nhave a month off recovering from an operation’.” (Olivia, 18). \n\n134 \n \n6.3.7.5 Hope \nDespite several sources of apprehension, a small number of participants expressed a slight degree of \nhope about their future. This was only a minor subtheme, and was mainly described by those who \nstated they had some sense of control of their endometriosis. This was either because their symptoms \nwere under control at the time of interview, or because they were taking active steps, such as dieting, \nto try to control their endometriosis. They did acknowledge some uncertainty as to how long this \nfeeling might last: \n“I think, I feel quite positive at the moment because it’s all under control, which is great, but \nyeah, it just varies from day to day really.” (Daisy, 19). \nHowever, a small number of participants who didn’t describe themselves as necessarily in control, \nsimply had hope that they would find  a treatment that would work. In addition, some described a \nsense of strength and determination; that they had already lived through their previous experiences \nwith endometriosis, and they could therefore cope with whatever they were presented with. \n \nSummary \nParticipants had concern about how endometriosis may affect their future, particularly given the \nuncertainty associated with endometriosis. They did not how their symptoms and treatment might \naffect their fertility, relationships, and employment. Some were hopeful that they would be able to \nlive with endometriosis. \n \n6.4 Chapter Summary \nThis chapter has reported on the thematic analysis of the in terviews conducted with AYW with \nendometriosis, which characterises their experiences. These themes and subthemes, as well as the \nway they interact with each other, highlight the complex experience of having endometriosis as an \nAYW. These results will be discussed in the following chapter, in the context of previous research, and \nin relation to the key objectives of the study. \n  \n\n135 \n \nChapter 7. Study 1 Discussion: Adolescent Endometriosis as \n‘Biographical Threat’ \n \n7.1 Introduction \n \nThe key aim of this qualitative study was to ch aracterise the illness experience of adolescents with \nendometriosis, and additionally to compare this to both the experience of endometriosis described \nby adult women, and the experience of other chronic illnesses during adolescence. Comparable to \nprevious research with adult women with the condition , the findings of this study indicate that the \nsymptoms of endometriosis  in adolescence are wide -ranging, and significantly interfere with many \naspects of life, including school, work, sport, social life, and re lationships. Like adult women, \nadolescents face a struggle to receive a diagnosis, and their support and information needs are often \nunmet. This study, however, evidences how adolescents’ experiences are significantly shaped by their \nage/life-stage. Participants’ narratives described their experiences as  discordant with being ‘young’  \nwhen compared to their peers’ lives, as exemplified by Zoe (age 19): “I just don’t live the life of a \nnormal 19-year-old...”.  \nMuch previous sociological research on adolescents with chronic illness (AWCI), draws on Bury’s \n(1982) concept of ‘biographical disruption’ to understand how young people simultaneously navigate \nadolescent developmental transitions alongside a chronic condition (see Section 2.5) (see e.g. Grinyer, \n2007; Kirk and Hinton, 2019) . This body of work argues that the experience of illness during \nadolescence and yo ung adulthood is somewhat distinct, resulting from fundamentally altered life \ntrajectories at a crucial transitional moment. This study expands on this body of knowledge, \ndemonstrating how endometriosis in adolescence is experienced as a ‘biographical thre at’, to both \ntheir present and imagined life -trajectories. The novel contribution of this study is how this \n‘biographical threat’ is further contextualised by the nature of endometriosis, which is a gendered, \ncontested, and stigmatised condition (Denny and Weckesser, 2019) . Endometriosis therefore \nthreatens their lives and self -concepts as adolescents/young women, and their imagined futures as \npossible mothers, intimate partners, and career women.  This chapter will discuss the significance of \nthe study findings in relation to participants’ life-stage and female identities.  \n \n7.2 The Impact of Endometriosis on Adolescent Lives \nAs detailed in the previous qualitative results chapt er (Chapter 5), adolescents’ accounts of \nendometriosis focused largely on their symptoms and how they caused them to ‘miss out’ on \n\n136 \n \nimportant aspects of their day-to-day lives, including school, sports, and social events. In turn, missing \nout threatened the ir grades, relationships, and emotional well -being. The most dominant symptom \ncausing these disruptions was pain, described in -depth by all participants, thus supporting previous \nresearch with adolescents (Moradi et al., 2014; Plotkin, 2004; Rush and Misajon, 2018; Staccone, \n2006) and adults (see e.g. Culley et al., 2013)  with endometriosis. However, heavy bleeding, and \nbowel/bladder issues were reported to have significant disruption, and surgeries/recovery time could \nalso interfere.  \n \n7.2.1 Disruption to School, Sports, and Social Participation \nSupporting previous research with adolescents (Bodén et al., 2013; DiVasta et al., 2018; Moradi et al., \n2014; Staccone, 2006), symptoms including pain, heavy bleeding, and bowel issues, caused significant \ndisruption to school, college, and/or university at tendance. This in turn affected their ability to keep \nup with schoolwork and impacted their grades, with some reporting that they obtained less \nsatisfactory results in major exams, and/or needed to re -sit entire school years. These findings are \ncommon to t he literature concerning AWCI (see review by Taylor et al., 2008) . This disrupted their \ncurrent biographies, but also threatened their future l ife-trajectories; they were faced with a \n‘reconfigured future’ (Kirk and Hinton, 2019), having to alter their educational and career choices from \nthose they had planned. Research with adults has highlighted the effect of endometriosis on school \nattendance, productivity, and academic attainment (Huntington and Gilmour, 2005; Manderson et al., \n2008; Moradi et al., 2014) , however it often does not describe the wider impact of school absence. \nAdolescents spend more waking hours at school than any other setting; in addition to the academic \naspect, school also involves spending time with friends, extracurricular  activities, and exposure to \ncultural knowledge (Eccles and Roeser, 2011). As such, school experiences can influence many aspects \nof adolescent development, including co gnitive, social, and emotional development (Eccles and \nRoeser, 2011). In this study, participants indicated that school absences also affected their social life \n(both within and outside of school) and participation in extracurricular activities.  \nMany participants missed physical education lessons at school, and were unable to play competitive \nsports or partake in hobbies. Most often this was due to pain or heavy bleeding . A unique finding in \nthe present study, reported by most participants, was pain with tampon use, which occurred both at \ninsertion and during use. Most participants stated that they were unable to use tampons because of \nthe pain, and one implication of this was their ability to participate in sports. It is of interest that this \nsymptom was first relayed in research with a younger sample. Given its links with dyspareunia (Landry \nand Bergeron, 2009) it is unlikely to be a symptom constrained to adolescents, however it may be an \n\n137 \n \nissue that is more pertinent to this age -group – perhaps because of the disruption it causes.  Limited \nsports participation further disrupted social lives, and for some participants, their plans of playing \ncompetitively.  \nIn addition to the social impacts of missed school and reduced sports participation, adolescents \nreported a marked disruption in their ability to attend social events, which supports findings in \nresearch with AWCI (Taylor et al., 2008; Winger et al., 2014; Woodgate, 1998) . Missing out on social \nactivities that are often taken-for granted amongst others their age contributed to feeling different to \nothers, and thus disrupted their self-concept as an AYA. This supports findings by Plotkin (2004) in her \nresearch with adolescents with endometriosis . For younger adolescents, such normative activities \nincluded going to friends’ houses and/or attending sleepovers, which was limited by symptoms such \nas pain and the fear of leaking blood, an anxiety which appears to be particularly concerning for young \npeople (Briggs, 2021; Burrows and Johnson, 2005; Donmall, 2013; Jackson, 2019; Lee, 2008; Newton, \n2016; Plan International UK, 2018) , and is rooted in concerns around stigmatisation and bul lying \naround menstruation (Burrows and Johnson, 2005; Newton, 2016; Roberts et al., 2002; Seear, 2009a). \nIn their older adolescent years, participants noted that their attendance at nights out with friends was \nlimited. In addition to pain, for many this was because they were unable to consume alcohol because \nit triggered their symptoms, which increased feelings of being ‘different’ to peers. Drinking alcohol is \noften considered a normative behaviour in older adolescence/young adulthood, particularly in the UK \ndrinking culture, and findings suggest that those who do not drink can feel like ‘outcasts’ (Seaman and \nIkegwuonu, 2010). \nIn addition to missing out on planned social activities, the unpredictability of symptoms meant that \nparticipants were hesitant to make plans, and thus felt endometriosis was taking over their life. Of \nparticular concern due to their unpredictability were bowel and bladder symptoms, affecting things \nlike car journeys and university attendance. Research with adult women with endometriosis has also \ndescribed bowel and bla dder complaints (Huntington and Gilmour, 2005; Moradi et al., 2014) , \nhowever, discussion of these symptoms is somewhat modest  in comparison to this study . Bowel \nand/or bladder issues were discussed at length by this sample, which suggests t hat they found them \na significant issue. It may be that their life-stage posed certain restrictions on their management, for \nexample, having limited access to a toilet during lessons/lectures/classes or having to seek permission \nto go. In addition, compare d to older women, adolescents may be more reliant on other people for \ntransport, or on public transport, and so are unable to make comfort breaks when needed. \nParticipants also discussed b owel and/or bladder symptoms with reference to feelings of \nembarrassment (see Section 6.3.2.4), which appeared a significant issue. In their focus group study, \nGupta et al. (2018) found that bowel symptoms were perceived by adolescents (male and female) to \n\n138 \n \nbe a  particularly embarrassing symptom of endometriosis. T ogether with  their findings on  \nadolescents’ views of painful sex, the authors underscored the importance of social context when \ndetermining one’s perceptions of endometriosis symptoms. This was evidenced in the current study, \nwhich highlighted the significance of certain symptoms during adolescence. \n \n7.2.2 Altered Relationships \nConsistent with findings in research with WWE (Denny, 2004a; Gilmour et al., 2008; Jones et al., \n2004c), missing out on social events widely affected participants’ peer relationships. However, this \nmust be considered in the context of life stage; adolescents are in the midst of major transitions in \ntheir social development, and consequently their peer relationships are one of the most important \naspects of their life (Brown and Larson, 2009). Indeed, qualitative studies including both adolescents \nand adults, have found that the impact of endometriosis on social life was more prominently \nhighlighted by adolescents, as compared to older participants (Moradi et al., 2014; Rush and Misajon, \n2018). During adolescence, fr iends begin to take on roles that family members are unable to fulfil \n(Buhrmester, 1996), and they provide a sense of belonging (Thomson, 2007). Friends also take over \nparents in the provision of social support (Bokhorst et al., 2010) , and peer acceptance can be a \nprotective factor in one’s well-being and self-esteem (Corsano et al., 2006; Rueger et al., 2010).  \nMany of these aspects of peer relationships were threatened by the presence of endometriosis for \nparticipants in this study. Thus, missing social events had deeper repercussions; it damaged \nfriendships, impacted feelings of peer accep tance, challenged participants’ self -concept as a \n‘teenager’, and triggered feelings of isolation.  Given the importance of friendship at this age, it is not \nsurprising that the loss of, or impact on, peer relationships was a significant factor in the expe rience \nof endometriosis described by the adolescents in this study. Such impact also contributed to issues \nwith emotional wellbeing, which were widely reported by participants, one of which was feeling \nisolated or lonely. Corsano et al. (2006) found that psychological well-being in adolescence depends \non peer group acceptance and integration, and that unsatisf actory peer relationships can intensify \nfeelings of loneliness. They highlight that while independence is an important part of adolescence, \nbeing alone is multidimensional, and includes being alone by choice, which can be positive for \ndeveloping autonomy a nd independence, and being alone due to social rejection, which can cause \nunhappiness, isolation, and damaged psychological well-being.  \nThese feelings of isolation and issues with emotional well -being have also been noted in research \nexploring adolescents’ experience of other chronic illnesses (McEwan et al., 2004; Winger et al., 2014; \nWoodgate, 1998) . In this study however, these feelings were further compounded by the stigma \n\n139 \n \nassociated with menstruation, and the lack of awareness or understanding about endometriosis \namongst peers. Stigma was a particularly apparent issue in the pre-diagnosis stage, as participants felt \nthey did not have a concrete reason for missing social events, and were embarrassed to disclose issues \nwith their periods. This has also been reiterated in research with women with endometriosis (Gilmour \net al., 2008) , and Seear (2009a) suggests is part of the practice of upholding ‘menstrual etiquette’ \n(Laws, 1991), to avoid the stigma (actual or anticipated) that might occur following disclosure. When \nthey did disclose, friends often normalised their pain and other symptoms, stating that everyone has \nperiods/period pain, and implied they should just ‘get on with it’. Seear (2009a) suggests that other \nwomen may do this because of their own discomfort in talking about menstruation, because it is an \ninherently embarrassing/taboo topic. Furthermore, Bury (1982; 1991) argued that when presenting \nsymptoms are widely found in the general population, although to a much lesser degree of severity, \nthen it makes it particularly problematic for them to be legitimised, both  by the self and others. \nParticipants’ reports of friends saying ‘it is only a period’ supports this idea. Even once a diagnosis was \nobtained, the widespread lack of awareness of endometriosis meant that friends were often unable \nto understand it, the symp toms of it, and how it affected participants. This could impact on their \nfriendships, increase isolation, and reduce the support that friends were able to provide. This was also \nhighlighted in previous research with adolescents with endometriosis (Plotkin, 2004; Staccone, 2006). \nParticipants social relationships were therefore altered, and to some extent controlled by their \nendometriosis symptoms. There was, however, some mention of the strengthening effect of \nendometriosis on peer relationships, as some had close friends who had been understanding and \nsupportive throughout their journey. This was therefore dependent on friends’ legitimisation of \nsymptoms and their awareness of endometriosis.  \nRelationships with parents were largely strengthened, particularly due to their support in seeking \ntreatment and a diagnosis, as also evidenced by adolescents with MS  (Kirk and Hint on, 2019) . \nParticipants did, however, feel they were reliant on their parents, and worried about the burden of \nendometriosis on them as well; some described their endometriosis as something the whole family \nhad to deal with. Other research with AWCI has indicated that the reliance on parents, as well as their \nover-protective practices, disrupted adolescents’ biographies in terms of a loss of independence \n(Grinyer, 2007; Kyngäs, 2004; McEwan et al., 2004) . In the current study, adolescents did not \nspecifically imply that they craved independence from their parents; they were more concerned with \nthe burden on their parents. Perhaps this finding is in part because all the participants were female. \nThe idea of adolescence as a time for finding one’s independence comes from Erikson’s theory of \npsychosocial devel opment (1968), however Sorell and Montgomery (2001)  highlight the potential \nandrocentric bias of some of the assumptions of th is theory. They argue that the idea that identity \n\n140 \n \nformation results from obtain ing independence from others is a stereotypically masculine notion, \nwhereas women often ground their sense of self and identity in their relationships with others. Thus, \nfor the females in this study, their lack of independence, and their closeness with th eir parents, may \nnot be seen as a negative experience compared to in other research with AWCI, which has included \nboth male and female participants. \nAnother relationship type discussed at length by participants in this study were those with romantic \npartners. These were also described to be strained and/or strengthened by endometriosis, often \nmediated by how supportive participants viewed their partner. As evidenced here, research with AWCI \nhas described issues with unsupportive partners (Coyne et al., 2018) , and concerns about physical \nattractiveness, either as a result of symptoms or treatments (Grinyer, 2007; Jones et al., 2011) . \nHowever, an additional romantic relationship burden posed by endometriosis is dyspareunia. As \nobserved with adults with endometriosis (see e.g. Denny and Mann, 2007; Huntington and Gilmour, \n2005; Seear, 2009a), dyspareunia was a significant concern for most participants in this study. They \nprovided detailed descriptions of the symptom and its’ impact, therefore enhancing findings in \nprevious qualitative research with adolescents, in which d yspareunia had been given relatively brief \nattention (Plotkin, 2004; Staccone, 2006). \nDyspareunia affected participants’ willingness to engage in sexual activity, with some avoiding it (and \nrelationships) altogether. Adolescents concerns regarding dyspareunia were broadly similar to those \nof adults with endometriosis, including the significant impact on relationships (Denny and Mann, \n2007; Jones et al., 2004c; Moradi et al., 2014), and the challenge to their perceived femininity (Griffith, \n2017). However, expanding on previous evidence (Plotkin, 2004), participants raised the additional \nconcern that this symptom threatened their self -concept as a young person . They perceived \nadolescence/young adulthood as a time in which they should be having fun and enjoying sex, and the \nfact that they weren’t made the m feel different. According to Ayling and Ussher (2008), adolescents \nand younger women might be particularly sensitive to sociocult ural representations of sex in the \nmedia, in which women are portrayed as permissive, and eager for sex; thus the experience of \ndyspareunia may cause them to feel different, immature, and constrained. Further compounding this, \nparticipants also alluded to feeling ‘unsexy’ because their clothing and/or underwear choices were \nrestricted by their symptoms. \nIn comparison to older women, who may be in more established relationships, adolescent \nrelationships may be more transitional and short-lasting (Grinyer, 2007). Adolescence is the life-stage \nassociated with sexual exploration , in which casual sex is considered a normative behaviour (Lyons, \n2009). While many participants described themselves to be in long-term relationships, some discussed \n\n141 \n \ncasual sexual encounters, and in particular the difficulty in explaining dyspareunia in this context. They \nalso expressed concern about future relationships; how to explain it in a new relationship, as well as \nfinding someone who would ‘put up with it’ – supporting previous evidence (Rush and Misajon, 2018; \nStaccone, 2006) . Thus, it appears that the experience of dyspareunia in adolescence altered \nparticipants’ self -concept as an AYA, but also threatened their life trajectories. Some discussed \nassociated feelings of sexual inadequacy and low self -esteem. Sexual relationship experience during \nadolescence can have long -lasting implications into adulthood (Lyons, 2009), and thus the onset of \ndyspareunia at a young age may have a more lasting impact on the development of self -concept and \nof healthy intimate relatio nships as compared to those with an onset much later in life (Donaldson \nand Meana, 2011).  \n \n7.2.3 Emotional Well-being \nThe discussion so far has emphasised how the different symptoms of endometriosis threatened \nparticipants ability to partake in ‘normal adolescent life’, and thus disrupted their biographies. The \neffect o f such included altered self -concept, isolation, and low self -esteem. One symptom which \nseemed to have a direct effect on self -esteem was bloating; mentioned by several participants. \nAlthough a physical symptom, references were often made to how the bloating made them look and \nfeel emotionally, rather than physically, and may reflect the importance of body image and \nappearance in this age group (Voelker et al., 2015) . Changes in physical appearance impacted their \nself-esteem; in addition to bloating, they also often experienced side-effects of their treatment, such \nas scarring, weight gain, and acne, which could alter their appearance and dist ort their body-image. \nAdolescence is a critical period for the development of body image (Voelker et al., 2015), and while a \nchange in phys ical appearance can be detrimental at any age, it can be particularly distressing to \nadolescents given the importance they place on their appearance (Bowker, 2006; Grinyer, 2007), and \nperhaps even more so for adolescent girls (Lock, 1998). For some participants in the current study, \nthis damaged their confidence, thus interfering with sexual relationships, and reducing participation \nin physical and social activities, which further increased their social isolation.  \nEndometriosis therefore had a profound effect on the emotional wellbeing of the participants in this \nstudy. In addition to altered self -perceptions, many experienced impacts on their mood an d mental \nhealth, which could be a response to the severity of symptoms, the impact of those symptoms on their \nlives, or others’ dismissal of their symptoms. This supports findings in other qualitative research with \nadolescents with endometriosis, who have described feeling stressed, emotional, miserable, \ndepressed, and even suicidal (Conboy et al., 2008; Moradi et al., 2014; Plotkin, 2004; Rush and \n\n142 \n \nMisajon, 2018; Staccone, 2006) . Again, this is not restricted to adolescents, as research with adults \nhas also documented such effects (see e.g. Cox et al., 2003a; Facchin et al., 2018; Jones et al., 2004c). \nHowever, mental health during adolescence is particularly fragile; issues that arise during adolescence \ncan have long-term mental and physical health consequences, and can also cause negative social and \neducational outcomes (Knapp et al., 2016) . Furthermore, poor mental health can lead to negative \nhealth behaviours during adolescence, such as smoking, drinking and substance use (ibid). There was \nno mention of substance/alcohol misuse in the current study, however, one of the  participants in \nPlotkin’s (2004) study of adolescents with endometriosis reported drinking to ease the pain and to \ndull the feelings of depression and loneliness. Therefore, it is something that needs careful \nconsideration in this age group.  \n7.2.4 Summary \nThis section has highlighted that the symptoms of endometriosis impacted many aspects of \nparticipants lives, including school, social life, relationships, and sexual encounters. Many of these are \nconsidered key aspects of adolescent life, and therefore, this a ltered participants’ biographies and \nmade them feel different to their peers. This affected their self -concept, self-esteem, and emotional \nwellbeing. Although adolescents do experience similar symptoms of endometriosis as described by \nadults, their priorities and concerns about their symptoms appear to differ due to their age and life -\nstage. Certain symptoms, such as heavy bleeding, bowel issues, and painful tampon use, appear to be \nparticularly disruptive during this life -stage. Symptom management was a ke y instigator for \nparticipants in their decision to seek medical help, their experiences with which are discussed in the \nfollowing section.  \n \n7.3 Adolescents’ Accounts of Obtaining Treatment and a Diagnosis of Endometriosis \nA significant portion of the stories told by participants involved their pursuit of a diagnosis of \nendometriosis, which as shown in Table 6.3, took them between 2 and 9 years. Delays in obtaining a \ndiagnosis are well documented in endometriosis literature  (see Section 2.7.2) , including that \npertaining to adolescents (see Section 3.3.1.2). Some evidence s hows that when symptoms begin \nduring adolescence, it can take longer for a diagnosis to be obtained than when symptoms start during \nadulthood (Greene et al., 2009), suggesting there may be differences in the diagnostic experiences of \nadults and adolescents. T o shed light on this, this  section discuss es findings a round participants’ \nexperiences of diagnosis and medical care, and highlights the age-specific challenges reported. \n\n143 \n \nParticipants waited 0 to 4 years between symptom onset and seeking treatment. According to Bury \n(1982), at the onset of a chronic condition, there is a  disruption to ‘taken-for-granted’ assumptions \nand behaviours, and t herefore one has to asses  'what is going on  here?’ – i.e. recognising there is a \nproblem. Through attending to their  bodily states , which are  not usually brought into their \nconsciousness, they then make decisions about seeking help (ibid). However, there are several aspects \nof endometriosis that made recognition of a problem, and thus seeking help, quite difficult for study \nparticipants. Firstly, the symptoms of endometriosis are closely aligned with menstruation (and in \nparticular dysmenorrhea), and according to Bury (1982; 1991), if presenting symptoms are widely \nfound in the general population, albeit to a milder degree, then it can be particularly problematic for \nthem to be recognised and legitimised. This was evidenced in the current study, in which participants \nstated they often just assumed their periods were ‘normal’.  \nWood et al. (2007) propose that young women’s judgements about the normality of their periods are \nbased on what they have learned, their previous menstrual experience, and if they consider their \nperiods to be problematic/extreme. The first, and to some extent the third, of these criteria relate to \nlearned norms (ibid). However, as found in the current s tudy (see Section 6.3.1.3) and evidenced \nelsewhere (Betty for Schools, 2017; Brown et al., 2022; Koff and Rierdan, 1995b; Plan International \nUK, 2018), girls often receive limited education about menstruation. Participants reported that they \ndid not receive adequate information on the embodied experience of periods , and were therefore \nunable to recognise that their symptoms were problematic.  They were also  largely unaware of \nendometriosis. Although experiencing severe pain and heavy bleeding, most participants thought this \nwas to be expected with menstruation,  part of their gendered biography (Manderson et al., 2008) , \nand therefore believed that their periods were ‘normal’. Even those who did think their periods were \nbad just assumed that they must be unlucky. This corroborates other research with adolescents with \nendometriosis (Bodén et al., 2013; Moradi et al., 2014), and is also found in the literature conducted \nwith WWE (Ballard et al., 2006; Denny, 2004b; Moradi et al., 2014).  \nWhile the issue of normalising one’s symptoms is not unique to adolescents, it does appear to be a \nparticular issue when symptom onset coincides with menarche. When this occurs, research suggests \nthere is a tendency to normalise, whereas if symptoms begin later (in the 20s/30s), after several years \nof unproblematic menstruation, women are more likely to consider there may be a problem (Denny, \n2009; Manderson et al., 2008) . Many participants who experienced symptom onset from menarche \nconsidered their symptoms to be ‘normal’, whereas the few whose symptoms began later were more \nlikely to believe that something was wrong quite quickly. This is consistent with Wood et al. (2007), \nwho found that young women construct their own ‘normal’ based on their previous experiences, and \neven if symptoms are extreme, as long as they are consistent across menstrual cycles, then they are \n\n144 \n \nbelieved to be ‘normal’. If symptoms become extreme or unpredictable, young women begin to \nconsider they may be ‘abnormal’ (Wood et al., 2007) . Thus, if s ymptom onset coincides with \nmenarche, an adolescent’s frame of reference is limited, and with nothing to compare to, they may \nconsider them normal. \nThe process of r ecognition was rarely aided by talking to others about symptoms. Participants most \noften cit ed talking to  their mothers, who were very supportive, but could further ‘normalise’ \nsymptoms, either by likening them to their own ‘difficult’ periods, or by suggesting they were just ‘one \nof those things’. This supports previous findings in research with adolescents (Bodén et al., 2013) and \nadults when reflecting on their teenage years (Denny, 2004b). Participants discussed symptoms with \nfriends more rarely, and  some reported that friends also suggested their symptoms were ‘normal’. \nThey cited others’ lack of awareness of endometriosis, or knowledge of menstruation, as contributory \nto these assumptions , which reiterates recent findin gs with young women with endometriosis and \nsevere dysmenorrhea in Canada (Le Roux et al., 2022). Some participants, however, said that they did \nnot discuss their periods very widely, feeling embarrassed, or stating they felt there was a “stigma” or \n“taboo” towards discussing menstruation. This has also been reiterated in research with WWE \n(Gilmour et al., 2008; Seear, 2009a). Participants’ lack of disclosure to others limited the possibility for \nthem to compare their symptoms with them, and they therefore missed another crucial opportunity \nto recognise that something may be wrong. \nStigma associated with menstruation, normalisation of symptoms, and lack of awareness of \nendometriosis all therefore made recognition of ‘illness’ difficult, and contributed to delays in seeking \nhelp for their symptoms. The eventual recognition that there may be something wrong occurred either \nafter doing their own research, usually online, or by the intervention of another person. In this sample, \nmost participants discussed the instrumental role of their parents, particularly their mothers, in \nrecognising that their symptoms were suggestive of a problem and making them seek help. This \n‘intercession’ (Manderson et al., 2008) often occurred after some period of living with the symptoms, \nwhen mothers recognised that the disruption to adolescents’ lives was becoming too significant. On \nrare occasions, intervention occurred because someone they knew  (i.e. mother, relative, or family \nfriend) had also suffered with endometriosis, and thus encouraged them to seek help, but in general, \nendometriosis awareness was described to be low. \nAfter the process of recognition, participants presented to medical professionals to get help for their \nsymptoms. However, they described several challenges, and so the path to ‘official recognition’ (Bury, \n1982) was rarely straightforward. Issues obtaining treatment and a diagnosis are discussed widely in \nendometriosis literature (see reviews by: Culley et al., 2013; Young et al., 2015) , but some research \n\n145 \n \nfinds that those with adolescent onset take longer to receive a diagnosis after presenting for medical \nhelp (Arruda et al., 2003; Ghai et al., 2020; Greene et al., 2009), so they may face unique challenges. \nIn the current study, the eventual diagnosis for some was obtained either because of emergency \nsurgery, or by using parents’ private medical insurance, so the diagnostic experiences migh t not be \nrepresentative of all those with adolescent onset. Yet, the ‘medical level’ delays were four times that \nof the ‘patient level’ delays, and participants described several challenges, some age specific, when \nseeking medical help. \nOne challenge consi stently reported by participants was frequent dismissals of their symptoms by \nhealth professionals. This is also a common finding in previous endometriosis research with adults (i.e. \nCox et al., 2003a; Denny, 2004b; Markovic et al., 2008) . However, research suggests that those with \nadolescent onset are more likely to report being told by physicians that nothing was wrong, or that \nthey weren’t taken seriously (Greene et al., 2009) . Arruda et al. (2003)  suggest this may part ly be \nbecause adults are more likely to present with fertility issues, which are taken more seriously. In this \nstudy, participants almost unanimously presented with pelvic pain, a symptom of endometriosis which \nclosely resemble s that of menstruation, albeit to a much higher degree of severity. Participants \nreported having their symptoms dismi ssed as just being part of normal menstruation (see Section \n6.3.3.1). Adolescents with polycystic ovary syndrome (PCOS) , another condition affecting \nmenstruation, have also reported such dismissals (Jones et al., 2011) , and Denny and Weckesser \n(2019) suggest that medical professionals often view menstrual problems with a degree of scepticism. \nFurthermore, findings indicate that female adolescents are more likely  than male  adolescents to \nreport having chronic pain dismissed by a physician, despite there being no differences in the cause \nof the pain (Igler et al., 2017) , reflecting a gendered bias in the treatment of pain (Hoffmann and \nTarzian, 2001; Samulowitz et al., 2018). Therefore, adolescents with endometriosis might experience \ndismissal due to a failure to legitimise their presenting symptoms, (closely resembling those of \nmenstruation), and due to their gender. \nSome participants were specifically told by medical professionals that they were ‘too young’ to have \nendometriosis, which has been noted in research with women, when recalling their teenage years \n(Cox et al., 2003a; Denny and Mann, 2008; Moradi et al., 2014). In some of these studies, the women \nare referring to interactions with medical professionals that could have occurred well over 15  years \nago. However, the concurrent finding in this study indicates that this is a myth which still prevails \namongst the medical community. In the past, endometriosis was considered to be rare, or even non-\nexistent in adolescent girls, and only very recent ly, in 2017, the NICE Guidelines were updated to \nacknowledge the occurrence in this age group (Kuznetsov et al., 2017) . Evidenc e obtained from \ndoctors suggests that they may prefer to be cautious when treating young women with suspected \n\n146 \n \nendometriosis, so as not to trigger anxiety (Dixon et al., 2021) . While such an approach is \nunderstandable, and may be necessary, it must be acknowledged that being cautious is very different \nfrom the perpetuation of myths, which this research importantly highlights is still a problem.  \nSome participants experienced issues in obtaining contraceptive treatment, and one reported being \ntold she was ‘too young’ for them. Some girls felt they had to lie and said they wanted them for  \ncontraception rather than for period pain , and others were concerned about the connotations of \ntaking contraceptives at their age. They believed health professionals would think they only wanted \nthem because they wanted to have unprotected sex. To knowled ge, this embarrassment concerning \ncontraceptive use has not been highlighted in previous research with WWE, so it could be a more \nsignificant concern for adolescents. Indeed, research has indicated that young people are \nembarrassed about contraception, and this embarrassment extends to contraceptive services (Baxter \net al., 2011); something expressed by the girls in this study, if having to attend family planning clinics \nto obtain their contraceptives. These are often the places one would attend to be screened for sexually \ntransmitted infections (STIs), and young people associate STIs with stigma  (Cunningham et al., 2002). \nThis stigma therefore extends to such clinics, and may put some young people off attending (Baxter \net al., 2011). In this study, girls were anxious that other people might find out they had been to such \na clinic, however some were forced to, because they struggled to obtain treatment from their GP.  \nAn additional challenge to receiving appropriate care and referrals illustrated in this study was a lack \nof continuity of care, which was due to the tendency for some participants to frequently  move \nbetween residences. As evidenced in this study, AYAs have a higher tendency than adults to lack one \npermanent residence (Arnett, 2004; Stone et al., 2011), for example if parents are separated, or they \nlive away from home when attend ing university. University students may enrol with healthcare \nproviders in a different NHS trust than their familial residence, and will often return home during \nholidays (Stone et al., 2011 ), which can extend up to 4 months in the summer; a lengthy period in \nwhich those which chronic illness might need medical care. In this study,  participants with transient \naddresses described  issues with their care, as healthcare providers in different areas failed to \ncommunicate with each other . They  therefore reported undergoing repeated investigations , and \nincreased wait times, which all contributed to their diagnostic delays. \nMany participants discussed the instrumental role of their parents, particularly their mothers, in their \neventual receipt of a diagnosis. Parents often acted as an advocate, recognising symptoms suggestive \nof a problem, and pushing for treatment and referrals. They also took on an intervening rol e by \naccompanying participants to appointments after they had failed to be taken seriously when attending \non their own. It is frequently reported that problems with menstruation are viewed with scepticism \n\n147 \n \nby medical professionals (Denny and Mann, 2008; Gupta et al., 2018), however, the fact that they are \ngiven more attention when a parent is present may suggest that adolescents experience additional \nproblems in their solo interactions with medical professionals. Research has suggested that \nadolescents are often more dissat isfied with medical consultations than adults; their appointment \ntimes are often shorter, and they leave without adequate information (Jacobson et al., 2000). AWCI \nhave noted that if parents are present, the conversation is often directed toward them and not the \nadolescent (Beresford and Sloper, 2003; Jones et al., 2011). In this study, the parent’s presence often \nhelped with the progress of the consultation, but it is unfortunate that they should need to be there \nfor the adolescent’s concerns to be taken seriously. Furthermore, this itself caused additional \nbarriers/delays, as the parents’ required presence meant appointments had to be facilitated around \nan extra person’s commitments.  \nIn addition to advocating for treatment and referrals, some pa rents also offered financial assistance, \nsuch as paying for private treatment, to try to speed up the medical process. This kind of support was \nbeneficial to the girls in this study, yet they acknowledged that it would not be available to everyone. \nThe aid of parents in these ways may partly explain the shorter average delay in diagnosis observed in \nthis study (5.2 years) as compared to the national average (7.5 years: Endometriosis UK, 2011). While \nmany studies have observed lengthier diagnostic delays for those with adolescent as compared to \nadult onset (Arruda et al., 2003; Greene et al., 2009), this study corroborates findings from DiVasta et \nal. (2018)  and Fong et al. (2017) , who found that thos e obtaining a diagnosis during adolescence \nreceived it more quickly than when a diagnosis is obtained during adulthood. DiVasta et al. (2018)  \nsuggested that factors such as parental advocacy and health insurance coverage may play a role, \nsupport for which was found in the current study. Adolescents who do not have financial support or \nparents to advocate for them might suffer much lengthier diagnostic delays than identified in this \nstudy. It is also worth noting that studies finding a lengthier delay for adolescents are some years older \nthan those which  found a smaller delay, which could reflect an improved understanding of \nendometriosis in this age group in recent times. \nDespite some of the barriers outlined above, all girls in this study eventually  obtained a diagnosis of \nendometriosis. Receipt of diagnosis provided legitimisation of symptoms by medical professionals  \n(Bury, 1982), which prompted feelings of relief for most, supporting previous findings with adolescents \n(Moradi et al., 2014; Plotkin, 2004; Staccone, 2006) and symptomatic women with endometriosis (see \nreview by Culley et al., 2013) . As found in such literature, diagnosis also brought about feelings of \nanger and vindication for some, at having to wait for so long, or being made to feel ‘crazy’ by medical \nprofessionals in the pr ocess. Many participants reported to receive their  diagnosis verbally, \nimmediately post-operatively, sometimes before their parents had arrived. They were often given \n\n148 \n \nlittle information, and still being “drugged-up” (under the effect of anaesthesia), lacked the capacity \nto ask questions. Many also stated they did not have a post -operative follow -up. This ill -timed \nprovision of diagnosis has been mentioned by women in previous research (Cox et al., 2003c) . \nHowever, adolescents may experience additional difficulty comprehending the information if they are \nnot yet at an adult’s level of understanding (Christie and Viner, 2005). They would likely benefit from \ninformation provision that is developmentally and cognitively appropriate (Yeo and Sawyer, 2005) , \nand perhaps to have their parents present.  \nHaving a diagnosis allowed for participants to explain absences etc. to others, and as found previously \n(Ballard et al., 2006) , it sanctioned access to support services, although these were often not age -\nappropriate (see section 7.4). However, the legitimacy offered by having a diagnosis also prompted a \nre-evaluation of the self in light of having endometriosis, which ignited feelings of fear, anxiety, and \nuncertainty towards the future (see section 7.5). According to Bury (19 82), this can trigger a \n‘mobilisation of res ources’, to try to face a now altered biography.  Participants drew on medical \nknowledge, but with unsuccessful treatments/side effects, some had turned to alternative ways to \ntreat their endometriosis. As found in WWE (Cox et al., 2003b; Room aney and Kagee, 2016) , diet, \nexercise, and relaxation techniques  were used to try to cope with symptoms , which could provide \nsome relief, and helped participants feel as though they were being proactive. However, they could \nprove costly, and therefore are unlikely to be accessible for all adolescents. \n \n7.3.1 Summary \nThe adolescents in this study faced significant challenges in obtaining treatment and a diagnosis of \nendometriosis, some of which were compounded by their age. The overlap of symptoms with those \nof menstruation raised issues related to stigmatisation, and made legitimation problematic. \nSymptoms were therefore often normalised or trivialised, causing significant delays in the diagnosis \nof endometriosis. Without a diagnosis, adolescents were unable to explain absences to others, or seek \nappropriate support, i ntensifying the feelings of isolation already caused by the interference o f life \nparticipation. Given the importance of peer relationships during adolescence, the isolation associated \nwith delayed diagnosis poses a risk for those in this critical period of identity development (Wren and \nMercer, 2021). Furthermore, disbelief and being made to feel ‘crazy’ could  further impact on the \nalready fragile state of mental health associated with adolescence (Knapp et al., 2016) . Thus, it is \nimportant to take an age -specific approach when considering experiences of treatment for \nendometriosis, which appear to be both affected by, and affective on, one’s life-stage. \n \n\n149 \n \n7.4 Support Networks and Information Needs of Adolescents with Endometriosis \nTo meet the various challenges associated with living with endometriosis, adolescents described the \nneed for considerable support. Mothers were a significant source of support, which confirms findings \nin previous research with adolescents with endometriosis (Plotkin, 2004; Staccone, 2006) . They \nprovided both practical and emotional support, and many acted as an advocate in getting their \ndaughters the correct medical help. This supports research with AWCI, in which parents are described \nas allies in helping with illness management and offer emotional and practical support (Cartwright et \nal., 2015; Kyngäs, 2004; Taylor et al., 2008). There was more specific emphasis on the role of mothers \nin the current study when compared with the AWCI literature, however fathers were said to provide \nmore practical based support (i.e. travel to appointments, financial support etc.). This may be due to \nthe gendered nature of endometriosis, and adolescents’ higher comfort in discussing menstruation \nwith their mothers (see Study 2 findings, Section 9.8.2). \nIn agreement with findings from adult women, adolescents often received little peer support because \nothers were often not understanding (Manderson et al., 2008) , or were not disclosed to due to \nembarrassment (Gilmour et al., 2008) . Research with AWCI has also evidenced peers’ lack of \nunderstanding (Cartwright et al., 2015; Winger et al., 2014; Woodgate, 1998), but has indicated that \ndisclosing illnesses to friends can be beneficial in eliciting support (McEwan et al., 2004), particularly \nfor girls (Cartwright et al., 2015) . In the current study however, disclosure to peers was not always \nstraightforward. In the pre -diagnosis phase, disclosure sometimes did not occur due to the stigma \nassociated with menstruation, and if it did, participa nts often noted their friends to normalise or \ndismiss their symptoms. As discussed previously, this may be partly because the symptoms of \nendometriosis are like those of menstruation, and therefore others fail to legitimise them. Even once \ndiagnosis had been obtained, other’s lack of awareness of endometriosis meant that few were able to \nunderstand or sympathise. As will be highlighted in Study 2 of this thesis, less than 10% of adolescent \ngirls are aware  of endometriosis (see Section 9.9), which is considerably lower than adolescents’ \nawareness of a number of other illnesses such as asthma (88%), arthritis (84%), diabetes (81%), breast \ncancer (72%) and epilepsy (31%) (Austin et al., 2002). While methods of measuring awareness might \ndiffer, it does seem that girls  are much less aware of endometriosis than they are of other chronic \nconditions which have similar prevalence rates, such as diabetes and epilepsy . Adolescents in this \nstudy did perceive others’ lack of awareness of endometriosis as a barrier to accessing their support. \nAs illustrated in this study, issues with peer support can increase feelings of isolation for AWCI, and \nenhance concerns around  being different to peers (McEwan et al., 2004; Winger et al., 2014; \nWoodgate, 1998). They therefore seek comfort in talking to those with a shared illness experience, \n\n150 \n \nwho can understand (Cartwright et al., 2015; Coyne et al., 2018; Kirk and Hinton, 2019). In this study, \nparticipants valued supportive connections with others who had endometriosis, who were able to \nunderstand what they were going through, and could also provide inform ation. This corroborates \nother findings with adolescents (Plotkin, 2004), and with adults (Shoebotham and Coulson, 2016) with \nendometriosis.  \nHowever, a novel and significant finding uncovered  in this study is that adolescents felt they lacked \nsupport that was age appropriate. They felt the concerns of many women at support groups (both \nphysical and online) were different to their own, owing to their different life-stage. Older women may \nhave concerns about their fertility, jobs, families, and marriages, whereas adolescents may be more \nconcerned about their schoolwork, friendships, and dating. Online support groups have been noted \nto be beneficial because they foster connections to those in a si milar position (Shoebotham and \nCoulson, 2016) , yet this research has highlighted that for adolescents with endometriosis, finding \nothers at a similar life -stage may be difficult,  particularly given the diagnostic delays,  and thus they \nmay miss out on some of those benefits. Furthermore, such environments can be somewhat daunting \nfor adolescents, as they are faced with a glimpse of what they may have to contend with in their \nfuture. \nAnother significant finding was that participants felt there was no information specifically targeted at \ntheir age group , and the information provided by medical professionals was sometimes difficult to \nunderstand. This supports findings in research with AWCI, in which adolescents have reported the use \nof complex terminology by clinicians, (Jacobson et al., 2001; Jones et al., 2011), not being given enough \ninformation (Jacobson et al., 2000) , and that information/care provision was not focussed on issues \nrelevant to their life-stage (Grinyer, 2007; Suris et al., 2004). In the current study, participants reported \nthat information often emphasised fertility, but little was given on the day -to-day aspects of living \nwith endometriosis as a teenager. Lacking adequate information, many sought their own information \nonline, something WWE have also described the need to do (Gilmour et al., 2008 ; Markovic et al., \n2008; Roomaney and Kagee, 2016; Seear, 2009b) . However, using the internet as an information \nsource does pose issues; there is a lack of high-quality, accurate, and credible information  about \nendometriosis available online (Hirsch et al., 2017). That which does meet such criteria is often difficult \nfor a lay audience, and therefore possibly for teenagers, to understand (ibid). \nAdolescents also described difficulty in explaining their illness to others, including how and when to \ntell intimate partners. Similar findings were revealed by Coyne et al. (2018)  who interviewed young \nadults living with chronic kidney disease. Participants in the current study stated that they wished for \ninformation specifically targeted at how to tell such people. AYAs may benefit from information \n\n151 \n \naround managing disclosure of their endometriosis to others, particularly peers and romantic \nrelationships, as this is an especially pertinent time for the development of such relationships. \n \n7.5 Futures: The Threat to Life Trajectories \n \nOne of the key disruptions of endometriosis on the lives of the adolescents in this study was how they \nviewed their futures. Almost all talked about a ‘reconfigured future’ (Kirk and Hinton, 2019); one which \nwas altered to incorporate potential effects of endometriosis, and thus different to what they had \nimagined. Previous research with both women and adolescents has described the high degree of \nuncertainty involved in living with endometriosis. Endometriosis cannot be definitively cured, and \nthere is a high rate of symptom reoccurrence following surgery, therefore women/girls have described   \nfear of continued pain and additional surgeries  in their futures (Conboy et al., 2008; Denny, 2004a; \n2009; Moradi et al., 2014; Plotkin, 2004) . This uncertainty surrounding symptom management and \nfuture surgery was discussed by most of the participants in this study, and compounded their concerns \nabout educational attainment, job stability, and future career prospects. Similar f ears have been \nhighlighted in research with AWCI (Cartwright et al., 2015; Suris et al., 2004; Taylor et al., 2008; \nWoodgate, 1998).  \nIn addition to academic/career concerns, endometriosis threatened participants’ personal life plans.  \nGiven the impact on relationships and issues with dyspareunia, many were  concerned about future \nrelationships, and being able to find an understanding partner, as evidenced in previous research with \nadolescents with endometriosis (Plotkin, 2004; Rush and Misajon, 2018; Staccone, 2006) . Although \nnot experiencing dyspareunia, similar concerns were raised by adolescents with a diagnosis of chronic \nkidney disease, who worried about finding a partner who would be able to take on the extra ‘baggage’ \nof their illness (Coyne et al., 2018).  \nAdolescents’ major concern towards their future, however, was their fertility prospects, supporting \nprevious findings with adolescents with endometriosis (Conboy et al., 2008; Moradi et al., 2014; \nPlotkin, 2004; Rush and Misajon, 2018; Staccone, 2006) . Fertility concerns have also been evidenced \nby WWE (see e.g. Denny, 2009; Facchin et al., 2018) . However, as previously demonstrated (Plotkin, \n2004), the adolescents in this study really felt that these concerns were not something that others \ntheir age should have to think about, and thus were incongruent with their life-stage. Indeed, research \nconducted with adolescents with PCOS indicated that they were three times more concerned about \ntheir future ability to conceive than healthy adolescents (Trent et al., 2003). In the current study, these \nfertility concerns threatened adolescents’ life -trajectories, and prompted them  to re-evaluate their \n\n152 \n \nfutures; particularly with regards to having children earlier than planned, perhaps before establishing \ntheir career. Such altered life-trajectories have also been highlighted by AWCI, in which their illness \nalso threatens their fertility (Coyne et al., 2018; Jones et al., 2011). \nParticipants received limited information about fertility from health professionals, with some being \ntold not to worry about it yet – presumably because of their age, and some told to start trying young. \nBeing told to start a family young may be daunting for those who are still developing their own \nidentities (Plotkin, 2004). Alternatively, being told there is little chance of conceiving might lead to \nunprotected sex and unplanned pregnancies (Jones et al., 2011) , which may pose additional burden \non the somewhat transient nature of adolescent romantic relationships. Adolescents and young adults \nwith endometriosis may therefore benefit from more targeted, age-relevant fertility information and \nsupport, which addresses fertility issues, contraception, and STI prevention.  \nDespite these numerous concerns, a small number of participants expressed a feeling of hope towards \ntheir future. This sense of hope and optimism for the future  has been previously found in another \nstudy with adolescents with endometriosis (Staccone, 2006), and in research with AWCI (Kirk and \nHinton, 2019; McEwan et al., 2004; Winger et al., 2014). Together, these findings offer some support \nto Denny’s (2009) argument that younger women with endometriosis may be more hopeful because \nthey have not experienced the same amount of false hope and relapses as some older women have. \nHowever, due to the exploratory nature of this research and the comparatively small number of \nparticipants that displayed hope, the study is limited in the extent to which conclusions about this can \nbe drawn.  \n \n7.5.1 Summary \nParticipants discussed the high level of uncertainty involved in living with endometriosis. This not only \nthreatened their biographies on a day-to-day basis, but also their imagined l ife-trajectories. Kirk and \nHinton (2019) researched adolescents with MS, who described a ‘reconfigured future’, in which their \nfuture biography wo uld now need to incorporate the potential effects of their chronic illness. This \nconcept was also evidenced in the current study, and supports Bury’s (1982) notion that chronic illness \ncauses a re -examination of the expectations  and plans for the future that an individual holds. This \nresearch contributes to our understanding of biographies  and chronic illness , to explore how \nadolescents with endometriosis experience a ‘biographical threat’. The condition threatens their lives \nand self-concepts as adolescents, but also their future biographies as wives/partners, professionals, \nand mothers. The uncertainty threatens their self-concept and identity. \n\n153 \n \n7.6 Strengths and Limitations \nThere has been very little previous qualitative research c onducted with adolescents with \nendometriosis. Two previous studies were conducted in the USA (Plotkin, 2004; Staccone, 2006) and \nthe remainder in Australia (Moradi et al., 2014; Rush and Misajon, 2018) , making comparisons with \nhealthcare experience less transferable given the differences in state provided healthcare outside of \nthe UK. To knowledge, this is the first study to explore the experience of endometriosis amongst a n \nadolescent sample in the UK, thus allowing an understanding of their particular healthcare experience. \nMoreover, while previous research has been conducted with women in the UK, samples often include \na broad age range (i.e. 18 -60), which means that acute  age-related concerns are being concealed \n(Brady et al., 2017). This therefore does not allow for theoretical discussions of the specific effect of \nendometriosis on development trajectories in adolescence (Sawyer et al., 2007). Building on previous \nresearch with adolescents with endometriosi s, this research has therefore allowed for these \ndiscussions to take place, within a UK sample. \nBy focusing on an adolescent sample, this research enabled an understanding of the symptoms that \nare important to adolescents, and how they impact them. This will be crucial knowledge to those that \nprovide healthcare and support to them. This is the first study to explore dyspareunia in depth in a \nyoung sample, as it had been given relatively brief attention in past research with adolescents. Perhaps \nit was not s pecifically asked about in such research, or it may reflect the slightly younger age of the \nparticipants in such studies compared to this research. Indeed, while many of the adolescents in this \nstudy did experience dyspareunia, few initiated discussions ab out it until specifically asked, possibly \nreflecting an embarrassment to discuss sexual matters at this age. \nThere were also some limitations to this study. Firstly, although the target age range for recruitment \nwas those aged 15 to 24 years, there were no participants aged under 18 years. Specific attempts were \nmade to recruit younger participants, such as targeted recruitment advertising, but these were \nunsuccessful. This could potentially be due to the delays in obtaining a diagnosis of endometriosis, as \nfew younger adolescents receive a diagnosis (Greene et al., 2009; Haas et al., 2012; Manderson et al., \n2008). It was anticipated that recruiting a younger sample may be difficult when designing the study, \nand therefore the upper age limit was 24, which also align s with contemporary definitions of \nadolescence (Hagell et al., 2013; Sawyer et al., 2018). All participants however experienced symptom \nonset prior to the age of 19, which ensured that when they discussed the time around symptom onset, \nthey described experiences which occurred during their teenage years. As such, it is believed that the \nadolescent experience of endometriosis is well represented in this research, and the overlap of \n\n154 \n \nfindings with research on those aged 15 to 19 years, for example by Plotkin (2004), provides further \nconfirmation of this. \nParticipants were also exclusively White-British, despite attempts to recruit an ethnically and racially \ndiverse sample. Therefore, the experiences of adolescents outlined in this study are not representative \nof those from a culturally diverse population. The lack of ethnic diversity in research addressing the \nexperience of endometriosis is an issue raised previously (Young et al., 2015) , and was further \nhighlighted in the narrative review conducted in chapter 3 of this thesis. There has been some \ndiscrepancy over the prevalence of endometriosis amongst different ethnic and racial groups, \nhowever differences observed are likely to be due to different study designs or populations (Jacoby et \nal., 2010). It is also important to consider that due to racialised health inequalities, people from racially \nminoritized backgrounds, Black women in particular, maybe less likely to get a diagnosis (Bougie et al., \n2019), which would have prevented them from being able to participate. There may be other factors \nwhich affect the participation of those from ethnic and racially minoritized communities in \nendometriosis research. One possibility is the typical avenues through which recruitment occurs, such \nas via Endometriosis UK’s support groups and social media as used in this study, may not reach and \nengage those with endometriosis from marginalised communities.  The lack of racial and ethnic \ndiversity of participants is a limitation, and therefore, there is a critical need for further research with \nadolescents from ethnically/racially underrepresented communities with endometriosis. \nA third limitation is the method of recruitment used, as most participants were recruited via \nEndometriosis UK. The use of this  platform might pose limits on who has access to the study \ninformation, as not all those who have endometriosis will use such organisations. There may also be \nkey differences in those who use online support, and who therefore took part in the research, and  \nthose who do not. For example, online support users might have increased suffering, fewer real life \nsupport networks, or increased loneliness. Furthermore, it was a finding of this study that such online \nplatforms might not provide the right support for a dolescents, and therefore, recruitment via this \nplatform for this demographic in particular may have been limited. It could account for why fewer \nyounger adolescents volunteered to participate. The study information was also openly shared on \ntwitter and Facebook using ‘#endometriosis’, but few potential participants made contact as a result \nof these postings. \nAnother potential limitation is that just over half of the interviews were conducted over the telephone, \ninstead of face-to-face. As discussed by some researchers, there is often concern that interviews that \nare not face to face can negatively impact the ability to establish a rapport with participants (Holt, \n2010; Novick, 2008). However, as highlighted in Section 5.8, telephone interviews were on average \n\n155 \n \nlonger than face to face interviews, so this is unlikely to have been an issue here. Using telephone \ninterviews allowed for the inclusion of participants from a more geographically diverse sample \n(Holloway and Galvin, 2017), and some participants may have felt more comfortable in talking about \nsensitive topics in this manner (Drabble et al., 2016).  \nThe final limitation, but one that is important to reflect on, is that the experiences described in this \nresearch are by those adolescents/young women who have managed to obtain their diagnosis of \nendometriosis. As the extensive literature into the diagnostic delay suggests, many others who will \nalready have symptoms, and perhaps be on their diagnostic journey, would not have had a diagnosis, \nand therefore would not have qualified for inclusion in this research. Their experiences, and the \nimpact on their lives might differ due to having an even lengthier time of living without a diagnosis. \nThis may be something to consider  for future research, although there are obvious obstacles in \ndrawing conclusions from those without a diagnosis. \n \n7.7 Conclusion \nTo knowledge, this is the first UK  based research to explore the experience of endometriosis in an \nadolescent sample, and highligh ts that this experience is  significantly shaped by their age and life -\nstage. Endometriosis not only impacts on many of the key aspects of adolescent life, including school \nattendance, peer/romantic relationships, and gaining independence, but also threaten s their self -\nconcept as a teenager/young adult, and their life-trajectories. In this way, the findings support those \nin other research with AWCI, which use the concept of ‘biographical disruption’ (Bury, 1982) to assert \nthat the experience of illness durin g adolescence and young adulthood poses a distinct effect, \nresulting from fundamentally altered life trajectories at a crucial transitional moment (see e.g. Grinyer, \n2007; Kirk and Hinton, 2019) . However, this research contributes to this body of knowledge on \nbiographies and chronic illness, demonstrating the importance of contextual factors such as gender, \nand the nature of the condition under study. Endometriosis is a poorly understood, gendered, and \nstigmatised condition, which significantly affects the illne ss experience for adolescents. The concept \nof ‘biographical threat’ is therefore introduced, to demonstrate how the experience of endometriosis \nin adolescence threatens their lives now as adolescents/young adults, and their futures as mothers, \nintimate companions, and professionals. The implications of this research, and recommendations for \nfuture research, are discussed in Chapter 11.  \n \n \n\n156 \n \nThesis Part 3: Quantitative Study \n  \n\n157 \n \nChapter 8. Study 2: Method \n8.1 Introduction \nThis chapter describes the methods employed within the quantitative study, including their rationale \nand justification. It begins with an overview of the aims of the research, followed by a description of \nthe exact methods used.  \n \n8.2 Research Questions and Aims \nThis research study was guided by the overarching questions: ‘What are the experiences of \nmenstruation in UK adolescents? What symptoms do they perceive to be typical, and are they aware \nof endometriosis?’ . T his research aimed to provide an up-to-date indication of the menstrual \nexperiences of a UK based  adolescent sample, and to provide insight into their perceptions of the \ntypicality of menstrual symptoms. Their  attitudes around menstruation, and their comfort at \ndiscussing it with other people were al so explored, to identify any evidence of stigma or taboo \nsurrounding menstruation. Finally, it was hoped that by providing a snapshot of the level of awareness \nof endometriosis in a UK setting, it would enable comparisons to international studies and would  \nindicate areas for improving MHE. The following more in depth research questions were addressed: \n1. What are the typical menstrual characteristics of a large sample of adolescents in the UK? \n2. Do they seek help for their periods, and what is the outcome of help seeking? \n3. What characteristics of menstruation do adolescents perceive to be ‘typical’?  \n4. What are adolescents’ attitudes towards menstruation, and who do they prefer to \ncommunicate about menstruation with? \n5. Are adolescents aware of endometriosis? Is their awareness associated with their own \nmenstrual experience, their demographic characteristics, and their attitudes towards \nmenstruation? \n6. Do adolescent girls want to learn more about endometriosis? Is this associated with their \nattitudes towards menstruation, own menstrual experience, or demographic characteristics? \nAs outlined in Chapter 4, the research questions for this study were best addressed using a \nquantitative method. \n \n\n158 \n \n8.3 Quantitative Approach: Surveys \nThe aim of this research study was to determine the menstrual experience and the awareness of \nendometriosis amongst adolescent girls in the UK, which required a quantitative approach, to produce \nnumeric data. Data on this topic could not be collected via secondary data analysis, as there were no \nexisting sources of data which held such information. Therefore, the data needed to be collected \ndirectly from a sample of the population of interest; adolescents in the UK. An appropriate approach \nto obtaining such data is a survey, as it can provide a snapshot of the phenomena of interest (Kelley \net al., 2003).  \nA descriptive cross-sectional survey design was appropriate for this study, which aimed to gather data \non the menstrual experience and awareness of endometriosis from adolescents at one time point, \nrather than over several time points (i.e. longitudinal studies: Bowling, 2014). Descriptive research is \noften used to estimate a certain phenomenon within a population (i.e. the prevalence), and  can also \ndescribe factors associated with it (i.e. demographic characteristics, health behaviours, attitudes etc.: \nKelley et al., 2003).  \nSurvey research methods have many advantages. They allow for the inclusion of a large number of \nparticipants, which increases the likelihood of obtai ning a representative sample upon which \ngeneralisations can be made (Bruce et al., 2008; Kelley et al., 2003). Having a large sample also allows \nfor comparisons to be made across the data set, between groups, such as  those which differ on \ncharacteristics like age or ethnicity. Survey methods also enable the collection of a large amount of \ndata in a short space of time, which can be both time and cost effective (Kelley et al., 2003) . This is \nparticularly valuable when used for a PhD thesis, which has strict time and budget constraints. From \na feminist standpoint, the use of a survey allows for a large number of repressed female voices to be \nheard (Miner-Rubino and Jayaratne, 2007). Finally, surveys are familiar to most people, they are likely \nto have completed a questionnaire of some sort in their lives, and so the method is easy understood. \nThere are also some disadvantages of a survey design. Surveys on their own do not allow for the \ninference of cause and effect relationships (Bowling, 2014). However, this kind of evidence was not \nrequired in the current study, which aimed to identify descriptive data, such as percentages, and \nvariables of association. In addition, cross -sectional surveys can only capture ‘fleeting’ data, which \nonly allows conclusions to be drawn at that period of time (Leedy and Ormrod, 2010). However, the \nuse of a survey in the current research was only intended to produce a snapshot of phenomena of \ninterest, to identify the need for further education, and so this posed no restrictions.  \n\n159 \n \nThe survey approach can employ several different methods of data collection, including interviews, \nand self-completion questionnaires (Kelley et al., 2003) . Interview methods are often used in \nqualitative research, as they allow for the use of open-ended questions to explore the phenomena of \ninterest. However, they are sometimes used in quantitative research, with a more structured \ninterview using closed -ended questions. When using interviews for survey completion it allo ws \nresearchers to build rapport with participants and seek clarity over ambiguous answers. However, \nthey are time consuming, and may be impractical when a large sample size is important (Leedy and \nOrmrod, 2010) . In addition, as compared to self -completion questionnaires, using interviews for \nsurvey completion is associated with increased social desirability bias, and lower levels of disclosure \nof sensitive information (Bowling, 2005). Therefore, a self-completion questionnaire was appropriate \nfor this research, which aimed to collect data about a sensitive topic, from a large sample. \n \n8.4 Sample and Research Setting  \nThe population of interest for this research was adolescent girls aged 15 to 19 years old. A discussion \naround the definitions of the age range for adolescence was provided in the methods ch apter of the \nqualitative study (see section 5.4), with definitions typically ranging from 10-19 years, or up to 24 years \nin some instances. In the qualitative study, the upper age limit of the sample was 24, to enable those \nwho began to experience endometr iosis symptoms during adolescence to have obtained their \ndiagnosis. However, as this was not needed in this study, the upper age limit of 19 years was chosen. \nFor the data to be comparable in the two studies, the lower age limit of 15 was also chosen in th is \nstudy.  \nThe minimum sample size required for this research was 400 participants. When the population of \ninterest is large, such as the case here, then Gay et al. (2012) suggest striving for a sample size of at \nleast 400 participants. By using a large sample size such as this, it increases the chances of obtaining a \nrepresentative sample of the population of interest (Kelley et al., 2003). A sample this size would also \nensure that the number of participants surpassed the ‘rule of thumb’ of 10 participants per variable \n(or events per variable), which is needed to run logistic regression analysis (Peduzzi et al., 1995). \nTo obtain access t o a large sample of adolescent girls, schools were chosen as the research setting. \nConsideration was given to using the internet to access this population; up to 98% of adolescents have \naccess to the internet (Office for National Statistics, 2018) , and previous research on menstrual \nexperience (Armour et al., 2020a; Armour et al., 2021a) and endometriosis awareness (Shadbolt et al., \n2013) in adolescents has used the internet for recruitment. However, by accessing potential \n\n160 \n \nparticipants through the internet it is not possible to verify that their characteristics meet the study \ninclusion criteria, i.e. age, gender, UK resident, etc. (Kramer et al., 2014) . When these criteria are \npertinent to the research, such as in this case, then recruiting in this way might impact the validity of \nthe research (British Psychological Society, 2017). McKellar and Toth (2016) therefore advise the use \nof a more controlled medium, such as a school. A similar approach was taken in another study on \nadolescent menstrual experience (Parker et al., 2010). \nIn addition to being able to verify participant inclusion criteria, it was envisaged that re cruiting in \nschools would enable access to a representative sample. In England, it is a requirement to stay in full \ntime education until age 16, and to remain in some form of education or training until age 18 \n(Department for Education, 2015). It was hoped that this setting would therefore provide a large and \ndiverse pool of potential participants from which to recruit.  \nThe final factor in the decision to use schools as a recruitment setting was because they were identified \nas a key stakeholder group for this research area. It was anticipated that education providers woul d \nbe interested in the research findings, which offer insight into adolescents’ educational needs around \nendometriosis and menstruation. Given the significant impact of both on adolescent school life and \neducation (Armour et al., 2020a; Plotkin, 2004), it would be in the interests of education providers to \nbe aware of the research results. By recruiting participants directly from schools, it would increase the \nvalidity of the research findings to stakeholder groups including schools and other education \nproviders, and they maybe more likely to take note. \n \n8.5 Recruitment \n8.5.1 School Recruitment \nSecondary schools within Birmingham and the West Midlands area were the target recruitment sites. \nPotential schools were identified on the local city council website, and on Google and Google Maps. \nInformation about each of the schools was gleaned from school websites, to identify those which were \neligible as potential recruitment sites. To be eligible, schools needed to have students in the target \nage range and be a girls’ school or a mixed school. School websites were also used to identify an \nappropriate contact person within each school, and their contact details. Contact persons included \nthe head teacher (or principle), the head of pastoral care, designated safe-guarding leads, and heads \nof years. In addition to using the internet to identify potenti al schools, the researcher and PhD \nsupervisors appealed to their own professional and personal networks for contacts within schools.  \n\n161 \n \nEach potential school was contacted between May 2017 and February 2018. Forty schools were \ncontacted, including 7 identifi ed via researcher/supervisor networks. Schools were contacted via \nemail, using a standard email and further information attachment (See Appendix 14). There was a \npoor response to these emails, and they were therefore re-sent after at least a month, and/or another \ncontact person at the school was emailed. Schools were contacted up to 3 times each, and eight \nschools in total responded, six of which were identified via researcher/supervisor networks. Of these \neight schools, seven agreed to hear more about the research, and one declined to participate. \nA face -to-face or telephone meeting was arranged with the contact person at each of the seven \nschools, to provide further study information, and to obtain details about the number of eligible \nstudents at the schoo l. Following these meetings, six schools agreed to participate in the research, \nproviding their written consent as a recruitment site. After discussions with the final school, it was \nmutually agreed that they would have very few students eligible to partic ipate, and it was therefore \nnot pursued.  \nEach of the six schools were contacted to arrange a date for survey completion. At this stage, 2 schools \nbecame unresponsive to all communication attempts. The final four schools provided a date for survey \ncompletion, and supplies were delivered to them accordingly. One school became unresponsive at \nthis point. The final number of schools therefore included in this study was three. This included one \nindependent mixed boarding school, one independent girl’s school, a nd one government run mixed \nacademy school. This therefore represented a diverse range of recruitment sites. \n \n8.5.2 Participant Recruitment \nOnce the schools had agreed to participate, a date for survey completion was planned at each school. \nAt least a week prior to survey completion, all female school students within the target age range were \nbrought together to be given information about the research, either by the researcher or by a teacher. \nThese information sessions were conducted ‘en -masse’ at two schools, a nd during tutor group \nsessions at one school. During these sessions, potential participants were given verbal and written \ninformation about the research, and the parent/guardian information sheet if they were under age 16 \n(see Appendices 15-17). On the day of survey completion, those who had decided to participate (and \nwhere necessary, had obtained their parents’ consent) attended a designated session. They were \ngiven the opportunity to ask questions, and if still happy to participate, they prov ided their consent, \nand then completed the survey. See further information below about the consent process (Section \n8.7.2). \n\n162 \n \n8.6 Measures: Survey \nFollowing the literature review, and in conjunction with the supervisory team, a  self-completion \nsurvey was designed specifically for this study. During construction, potential survey items were \nthoroughly scrutinised according to why they were being asked, and how they would help to answer \nthe research questions, to ensure that all survey items were essential to the research problem (Leedy \nand Ormrod, 2010) . The survey consisted of questions which were either newly developed or were \nexisting questions which had been used in similar research. By using the questions of other \nresearchers, it allowed for those questions to have already been pilot tested in a previous similar \nsample, and enabled comparisons to be drawn with such other research (Bryman, 2016). In addition \nto pilot testing the survey (described below in section 8.6.1), the survey was shown to school teachers \nto assess the content and comprehensiveness of the survey, and thus ensuring its validity (Bowling, \n2014). \nThe final survey used in this research can be found in Appendix 19. There were several question types \nin the survey, including single and multiple  response questions, rating scales, and a few free-text \nquestions. The free-text questions were used for ‘other’ answer options throughout the survey, and \nwhen respondents were asked to describe what they thought endometriosis was. The use of free-text \nquestions allowed respondents to answer in their own words, rather than those imposed upon them, \nand allowed for the generation of unanticipated or unusual responses (Bryman, 2016). The survey \nconsisted of four sections; ‘about you’; ‘about your usual periods’; ‘attitudes about periods’; and \n‘about endometriosis’. \nThe first section, ‘about you’, gathered demographic characteristics of the sample, including their age, \nethnicity, religion, and school type. These were collected to allow for the investigation of any \ndifferences between participants based on such variables. Ethnicity is a complex, and debated term; \nit incorporates aspects of one’s ancestry, culture, history, and homeland (Baumann, 2004). In surveys, \nit is common to ask for one’s self-defined ethnicity (Burton et al., 2010), which was the initial approach \ntaken in this survey (using a free text response), however, after data collection in the first school , it \nbecame apparent that many participants were unable to understand this complex term, and therefore \nsome example options were given (e.g. White, Black, Asian, Mixed, etc.).  \nSection 2, ‘about you r usual periods’ included questions about respondents’ age at menarche, cycle \npatterns, and menstrual experiences. These questions were asked to identify the typical menstrual \npattern in this sample, and to measure any associations between menstrual experi ence and \nknowledge of endometriosis. Some of the questions in this section were a modified version of those \nused by Parker (2006), who explored menstrual patterns and menstrual disturbance in teenagers (see \n\n163 \n \nalso Parker et al., 2010). Such questions included the length of menstrual cycle, rating of period pain, \nusing medication for periods, and missing school for periods. In addition to these questions, this \nsection of the survey also asked about contraceptive pill use, seeking medica l help for periods, and \nperceived typicality of periods. Contraceptive pill use and school absenteeism were used in a survey \nof teenagers by Zannoni et al. (2014) , due to their associations with a subsequent diagnosis of \nendometriosis in adulthood (Chapron et al., 2011b) . Questions about seeking help for periods were \nincluded, firstly to identify the n umber of teenagers who had sought help (to make comparisons to \nother research, i.e. Parker et al., 2010) and secondly to obtain information on their reported outcome \nof help seeking. Finally, questions about the typicality of periods were asked to gain insight into what \naspects of menstruation adolescents perceived to be typical. In this survey, the word ‘typical’ was used \ninstead of ‘normal’ (as has been used elsewhere). This was simply to avoid inciting concern a mong \nparticipants because of the connotations of the word normal (that it implies anything else is abnormal: \nJi, 2017).  \nIn section 3, ‘attitudes about periods’, respondents were asked about their attitudes towards \nmenstruation and communicating with others about menstruation. To obtain information about their \nattitudes, a number of items were taken from the Menstrual Attitudes Questionnaire (MAQ; Brooks-\nGunn and Ruble, 1980) and it’s Adolescent version (A-MAQ). These questionnaires each comprise of \na number of items to measure attitudes towards menstruation based on five common factors of \nmenstruation as; bothersome, debilitating, natural, predictable, or denial of any effect of \nmenstruation. The A-MAQ has an additional factor; embarrassment. As attitudes were not the primary \naim of this research, and to prevent the survey from being too long, then neither the MAQ nor the A-\nMAQ were used in their entirety, and instead, several items were chosen from these scales to obtain \nan indication of participants’ attitudes towards menstruation. In addition to items from these scales, \nrespondents were asked about their overall attitude towards periods, c hoosing between ‘positive’, \n‘negative’ and ‘don’t mind’. It was anticipated that those with more negative attitudes may not wish \nto learn about endometriosis. In the final part of this section, participants indicated their comfort level \nin discussing menstruation with friends and family members, and were asked about past and future \nsources of information about menstruation. \nFinally, section 4 addressed respondents’ awareness of endometriosis, and preferences for learning \nabout it in future. The opening ques tion was ‘do you know what endometriosis is?’ and participants \nwho answered ‘yes’ were asked to describe endometriosis in their own words. This was believed to \nbe an effective way of assessing their awareness. Previous research has asked ‘have you heard of  \nendometriosis?’ (i.e. Armour et al., 2021a; Zannoni et al., 2014) , however, it was assumed for the \ncurrent study that having heard of something was not necessarily synonymous with knowing what it \n\n164 \n \nis. By giving a description in their own words, this research allowed for an evaluation of respondents’ \nlevels of awareness and understanding (Bryman, 2016), and to identify what aspects of endometriosis \nwere most salient to them. A similar method of assessing understanding was used by Shadbolt et al. \n(2013). \nTo ascertain respondents’ preferences for learning more about endometriosis, a short description of \nendometriosis was provided to them. This was purposely put on a separate page to the question \nasking if they know what endometriosis is, in the hope that they would not see this description when \nanswering that earlier ques tion (see 5th and 6 th pages of the survey , Appendix 19). This description \nneeded to be written in simple terms, and not be complicated by medical jargon, and therefore a \nmodified version of that given by Endometriosis UK (2014), in an information leaflet aimed at \nteenagers, was used. To ensure it met these criteria, the description was shown to schoolteachers and \nteenagers during survey construction. Following this description of endometriosis in the survey, \nrespondents were asked their preferences for learning more about endometriosis, including how they \nwould like to learn about it, who they would be comfortable talking to about it, and whether they also \nthought boys should learn about it. These questions were similar to thos e used by Shadbolt et al. \n(2013). \nThe survey was designed as a pen and paper survey, to be completed at school during school hours. \nConsideration was given to administering the survey through an online survey platform, which has \nmany advantages including a quicker completion time, less missing data, and significant time saved \non data entry. However, there is a lack of control over the settings in which online surveys are \ncompleted (McKellar and Toth, 2016). Control was important in this study, as one of the key aims was \nto identify participant s’ knowledge about endometriosis, and if the survey was completed online, \nthere would be nothing stopping respondents from opening an additional webpage to search for \ninformation, thus affecting the outcome. An additional benefit of this pen and paper form at is that \nstaff/researchers could ensure participants did not talk between themselves while completing the \nsurvey, and therefore the opinions provided were more likely to be their own. A pen and paper survey \nwas also used in similar past research (Parker et al., 2010). \n \n8.6.1 Piloting the Survey \nThe survey was piloted with adolescent girls from the target population, to assess the format, clarity \nof wording, and ease of implementation. Hertzog (2008) suggests that when the objectives of the pilot \nstudy are such, then a sample size of 10 participants will suffice. The survey was therefore piloted with \n10 teenage girls, who adequately represented the age range of the target population (15 -19). These \n\n165 \n \nparticipants were recruited using a snowballing method, through  friends, colleagues, and other \nacquaintances, who were asked if they knew someone in the target age range who could complete \nthe survey (with parental consent if under 16). Three of the pilot sample were teenagers with \nendometriosis who took part in the q ualitative study. These participants were  additionally able to \nassess the information about endometriosis provided in the survey , and ensure the relevance of the \nsurvey’s content, thus aligning with the feminist lens. \nThe participants in the pilot study co mpleted the questionnaire individually and were given the \nstandardised instructions prior to completing the survey. The length of time it took them to complete \nthe survey was measured, and once they had finished, they were asked for feedback on the design,  \nwording, and contents of the survey. All participants agreed that the contents and the wording of the \nstudy were age appropriate. The layout of the survey was also described as easy to follow. Participants \nindicated that there were only minor issues with the survey, such as the omission of instructions for \nhow to answer some of the multiple answer questions, such as ‘please tick any that apply’, or ‘please \ntick only one answer’. They agreed that the information sheets provided were also clear and easy to \nunderstand. As there were no major changes to the survey following the pilot (other than to clarify \nsome instructions), the data collected by the pilot sample was included in the final analysis, however \nthe surveys completed by the three teenagers with endo metriosis were excluded (as a key research \naim was measuring awareness of endometriosis). \n \n8.7 Ethical Considerations \nThe importance of following standards of ethical conduct was outlined previously in Section 5.7. The \nprinciples outlined in the BPS ‘Code of Human Research Ethics’ (2014) were adhered to in this research \nstudy by the following methods:  \n5) Respect for the autonomy, privacy and dignity of individuals and communities.  This was \nachieved by ensuring participants made their own fully informed decision to participate in the \nresearch, and in doing so were provided with adequate information about the research and \ntheir rights as a participant such as confidentiality, consent, and withdrawal.  \n6) Scientific integrity. This was ensured through the process of obta ining ethical approval, in \nwhich the design and rationale for the research were independently scrutinised and \nconfirmed. \n7) Social responsibility.  Key stakeholders (Endometriosis UK and schoolteachers) were \ncontacted for guidance in the research/survey design and for permission of access (school \n\n166 \n \nstaff), which ensured this research created knowledge that was beneficial to society, and that \nsocial structures would be respected through the conduct of the research.  \n8) Maximising benefit and minimising harm.  While generating such knowledge that would be \nof benefit, it was of upmost importance to safeguard the well-being of research participants. \n  \nFurther d etails about how the ethical principles of the BPS code of ethics were considered and \nactioned in this research are subsequently outlined. As indicated by the guidelines, ethical principles \nwere considered from the initiation of the study, through to the writing up of study findings. \n \n8.7.1 Obtaining Ethical Approval to Conduct the Research \nPrior to commencing any research activities, approval was sought, and granted by the University Ethics \ncommittee (FAEC) at Birmingham City University (see Appendix 20).  \n \n8.7.2 Consent, Confidentiality, and Withdrawal \nParticipants were aged 15-19 years old at the time of participation. Those who aged 16 or over we re \nable to give  their own permission to consent to research . Those under 16 also provided their own \nconsent, however they needed additional consent from a parent or guardian before they could \nparticipate. Consent was obtained from parents/guardians using either an active (opt -in) or passive \n(opt-out) measure of consent, the decision of which was determined by each individual school. The \nuse of active consent required parents/guardians to complete and return the parental consent form \nbefore the survey completion day to enable their child’s participation. If passive consent  was used, \nthen parents/guardians who did not wish their child to take part in the research were advised to return \nan opt-out form on/before survey completion day. Passive parental consent has been previously used \nelsewhere in research with adolescents in a school setting in the UK (Kyle et al., 2012; Spence et al., \n2015) and with adolescent girls completing questionnaires about menstruation (Parker et al., 2010).  \nPotential participants (and parents/guardians if under 16) were provided  with an information sheet \nprior to planned survey completion day, which explained  the research in full, and their right to \nwithdraw (see appendices 15-17). It was important that the information distributed to both students \nand their parents used accessible language, with no complicated medical jargon, and that it clearly \nexplained the research procedure and their rights as participants (Drews et al., 2009). Parents of those \n\n167 \n \nunder 16 were given the date by which their opt-in, or opt-out, consent forms needed to be returned. \nPrior to taking consent from the adol escents, the researcher or school staff read through the \ninformation sheet with them, and gave them the opportunity to ask questions. Participants then \ncompleted a consent form, which listed several statements to which they had to tick to confirm they \nhad read, such as their right to withdraw and their confidentiality rights. They also had to sign and \ndate the consent form (see Appendix 18). \nTwo schools chose to use opt-out (passive) parental consent to obtain parents/guardians permission \nfor under 16s to b e involved in the research. One school decided that they wished to obtain opt -in \n(active) parental consent from the parents of all participants, regardless of their age (as it was their \nusual school policy to do so). In this instance, the procedure outline d above, regarding obtaining \nparental consent for those aged under 16, was employed for those aged over 16 as well. \nTo maintain participant confidentiality, participants were given an ID number upon completion of the \nsurvey, and their data was stored according to that number . Therefore, neither their name nor any \nother identifiable information was associated with any of their research data.  Furthermore, no \nidentifiable information is reported in the results. Data was stored in accordance with the Data \nProtection Act 1998 , where by physical data was encrypted and stored in a locked cabinet at \nBirmingham City University, and electronic data was stored under password protection on a secure \nserver. \n \n8.7.3 Protecting the Well-being of Research Participants \nThis research involved only the completion of a short survey, therefore there was very low risk of it \ncausing any upset to participants’ well -being. The survey explored participants’ understanding of \nendometriosis, and other matters of menstrual health, which may have caused participants to become \nmore inquisitive about such matters. Therefore, all participants were provided with a further \ninformation sheet on completion of the survey, which included more inform ation about the topics \ncovered in the questionnaire, and indicated the organisations to contact should they wish to seek \nfurther information or advice (see Appendix 21). \n \n8.7.4 Respecting the Potential Power Imbalance Between Researcher and Participants \nThere may have been the potential for a power imbalance to occur between the researcher and the \nparticipants, due to factors such as age and status. Power relations were considered at each stage of \n\n168 \n \nthe research process, and attempts were made to minimise this imba lance, such as involving those \nfrom the sample population in questionnaire development (i.e. in the pilot phase), and by ensuring all \nparticipants were aware that they did not have to answer any questions which made them feel \nuncomfortable. \n \n8.7.5 Obtaining Necessary Permissions \nAccess to the study population required permission to be  granted from gatekeepers, which were \nusually the school head teachers or year leaders. Further details of how this access was achieved  is \nprovided in section 8.5 ‘Recruitment’ above. \n \n8.8 Data Collection \nSurvey completion took place between November 2017 and March 2018. Prior to each school’s \nplanned survey completion date, they were provided with the materials necessary to conduct the \nstudy. These included participant information sheets , parent information sheets/consent forms, \nparticipant consent forms, surveys, and further information/support sheets. As described in section \n8.5.2, participants (and their parent/guardian if required) were given the study information at least a \nweek prior to the planned survey completion day. \nThere were slight differences in the survey completion settings and patterns for each of the schools, \ndue to individual school constraints. At the first school, one survey completion session was arranged \nat a given date/time, and participants completed the surveys in one sitting, ‘en-masse’. At the second \nschool, participants attended one of several survey completion sessions, which were held during form \ntime over the course of a week. At the final school, participant s completed the survey during their \ntutor group sessions. These slight variations were considered reasonable within the design of the \nstudy, and they ensured that school participation was retained. \nWhen they attended their survey completion session, participants were provided with a consent form \nand a survey to complete. They were asked to read the consent form carefully before ticking all boxes \nand signing at the bottom. They were all given the same verbal instructions (see Appendix 22), such \nas working through the survey in order and not conferring with friends. It was also reiterated at this \npoint that the survey was confidential. Participants then completed the survey, and once finished, \nsurveys were collected and the further information/support sheets were distributed. \n \n\n169 \n \n8.9 Data Analysis \nThis section details the steps that were taken to prepare the raw data for analysis, including data \ncleaning and coding, and then describes the methods of analysis that were conducted with the data. \n \n8.9.1 Data Preparation and Cleaning \nThe raw data in this study comprised of a large number (n=442) of completed paper surveys. The first \nstage in the data preparation was to mark each paper survey with a unique ID number. Each \nparticipants’ data would be stored according to that ID number, and subsequently, the data entered \ninto the electronic database could be compared to the raw source if any queries arose. Prior to \ninputting the data into an electronic database, a code book was constructed to define the rules for \ntranslating the responses into numerical codes, ready for analysis. As a rule, the codes ‘0’ and ‘1’ were \nassigned to ‘no’ and ‘yes’ respectively for no/yes answer questions. When there were more answer \noptions available, such as for religion, all potential answers were numbered, i.e. 1 for Christian, 2 for \nBuddhist, 3 for Hindu and so on. For missing data, a code of 999 was used, and when an answer was \nnot applicable (i.e. respondents answered no to the question before and were told to skip a question) \nthe code of 888 was used. Once the code book had been constructed, data was inputted onto an \nelectronic database, hosted by Microsoft Excel. \nAt this point, codes had not been constructed for the free -text items on the survey, including \nnumerous ‘other’ options  and the question relating to their knowledge of endometriosis. \nRespondents’ answers for each of these questions were initially written out in full into excel, and once \ndata entry was complete, the answers to these questions were transferred into NVivo, to be coded. \nAs described by Bryman (2016), a method similar to content analysis was used to code this data. The \nanswers were read and re -read to enable familiarisation, and then they were grouped to obtain \nthemes or categories. Each category was then given a number, and these numbers were entered into \nthe spreadsheet in place of the words. \nData entry for th e entire sample was performed by the candidate. Once complete , the data was \nchecked for data entry errors and anomalies, through a process of data cleaning. The  ‘sort and filter’ \nfunction of Excel allowed for the identification of data that appeared erroneous, and when such was \nfound, it was compared with the original paper survey and corrected if necessary. For example, when \nanswering the question about their experience of period pain, the response options were ‘no’ (coded \n0), ‘yes, with every period’ (cod ed 1) and ‘yes, with some periods (coded 2), as well as missing data \n(999) and not applicable (888). If any response other than 0, 1, 2, 888 or 999 was found, it was \n\n170 \n \napparent there was an error.  This check was performed  for each item on the survey. Once da ta \ncleaning was complete, the data from the Excel file was uploaded onto SPSS to begin data analysis. \n \n8.9.2 Data Analysis \nData was analysed using SPSS Version 24. The medians and ranges were calculated for continuous \nvariables, and the frequencies and percentag es were obtained for categorical variables. To analyse \nthe data further using inferential statistics, tests for normality (calculating the z-scores of the skewness \nand kurtosis, and visual inspection of Q-Q plots and histograms) were performed on the conti nuous \nvariables (i.e. current age, age of menarche); all were found to be not normally distributed. Therefore, \nsubsequent analysis of data used either the Mann -Whitney U test or the Kruskal -Wallis test for \ncontinuous data, and Chi-squared tests for the categorical data. For the latter, if expected cell counts \nwere less than 5 for more than 20% of the cells, then a Fisher’s exact test was used for 2x2 tables \n(Field, 2018), and a likelihood ratio chi -squared test for larger tables (McHugh, 2013). A p value of \n<0.05 was considered to be significant (Fisher, 1925). Inferential statistics were conducted when they \nwere required to answer the research questions. Table 8.1 provides further information on the  \nanalyses performed for this study. \n \n\n171 \n \nTable 8.1: Key Data Analyses for Research Questions \nResearch Question Variable Type and Analyses Variables \n1. What are the typical menstrual characteristics of a large \nsample of adolescents in the UK? \n \n \nFurther analysis of period pain severity and associations with \nmenstrual related behaviours (to compare to previous \nresearch) \nContinuous variables: Medians and \nRanges \nAge of first period, Duration of menstrual bleeding, Duration of menstrual cycle \nCategorical variables: Frequencies \nand percentages  \nRegularity of menstrual cycle, Experience of period pain, Severity of period pain, Medication use for period pain, \nEffectiveness of medication, Missing school due to periods, Contraceptive pill use \nCategorical IVs: Chi-squared test  DV: Period Pain Severity (mild/moderate/severe)  \nIVs: Medication use for period pain, Missing school due to periods, Ever seen doctor about periods, Contraceptive \npill use \n2. Do they seek help for their periods, and what is the \noutcome of help seeking? \nCategorical variables: Frequencies \nand percentages \nEver seen doctor about periods, Outcome of doctor’s visit, Feeling reassured following visit \n3. What characteristics of menstruation do adolescents \nperceive to be ‘typical’?  \nAll menstrual characteristics, and menstrual related \nbehaviours, were used in these analyses, providing they did \nnot have large amounts of “not applicable” data (i.e. length \nof menstrual cycle, for which many participants ticked ‘don’t \nknow’). \nContinuous IVs: Kruskal-Wallis test \n(as perceived typicality has 3 levels) \nDV: Typicality of periods (Typical, unsure, not typical) \nIVs: Age of first period, Duration of menstrual bleeding, Severity of period pain, Effectiveness of medication \nCategorical IVs: Chi-squared test or \nFisher’s exact test \n \nDV: Typicality of periods (Typical, unsure, not typical) \nIVs: Regularity of menstrual cycle, Experience of period pain, Medication use for period pain, Missing school due to \nperiods, Contraceptive pill use, Ever seen doctor about periods \nMultinomial logistic regressiona Items in the above two analysis rows that were significanta \n4. What are adolescents’ attitudes towards menstruation, \nand who do they prefer to communicate about \nmenstruation with? \nCategorical variables: Frequencies \nand percentages \nAMAQ/MAQ Items, Overall attitude towards periods, Communication about periods items, Learning about periods \nitems \n5. Are adolescents aware of endometriosis?  \n \n \nIs their awareness associated with their own menstrual \nexperience, their demographic characteristics, and their \nattitudes towards menstruation? \nCategorical variable: Frequencies \nand percentages \nKnowledge of endometriosis (yes/no) \n \nContinuous IVs: Mann-Whitney U \ntest  \nDV: Knowledge of endometriosis (yes/no) \nIVs: Age, Age of first period, Severity of period pain, AMAQ/MAQ Items \nCategorical IVs: Chi-squared test or \nFisher’s exact test \nDV: Knowledge of endometriosis (yes/no) \nIVs: Ethnicity, School Type, Regularity of menstrual cycle, Experience of period pain, Medication use for period \npain, Missing school due to periods, Contraceptive pill use, Ever seen doctor about periods, Perception of periods \nas typical, Overall attitude about periods \n6. Do adolescent girls want to learn more about \nendometriosis?  \nIs their awareness associated with their attitudes towards \nmenstruation, own menstrual experience, or demographic \ncharacteristics? \nCategorical variable: Frequencies \nand percentages \nWanting to learn more about endometriosis (yes/no) \nContinuous IVs: Mann-Whitney U \ntest  \nDV: Wanting to learn more about endometriosis (yes/no) \nIVs: Age, Age of first period, Severity of period pain, AMAQ/MAQ Items \nCategorical IVs: Chi-squared test or \nFisher’s exact test \n \nDV: Wanting to learn more about endometriosis (yes/no) \nIVs: Ethnicity, School Type, Regularity of menstrual cycle, Experience of period pain, Medication use for period \npain, Missing school due to periods, Contraceptive pill use, Ever seen doctor about periods, Perception of periods \nas typical, Overall attitude about periods \naThe theoretical basis for using logistic regression models includes measuring associations, predicting outcomes, and/or controlling for the effects of confounding variables (Stoltzfus, 2011). Each was important in this \nstudy, however, it was largely used to control for confounding variable effects, hence why all significant associations from the above analyses were entered in.  \nDV = Dependent Variable, IV = Independent Variable \n\n172 \n \n8.9.2.1 Missing Data \nThorough data cleaning, and the assigning of codes for missing data (i.e. 888 & 999) ensured that \nthere was no “system missing” missing data to be handled in the analyses. Missing data analysis was \nperformed on the key variables (i.e. those to be used in inferential statistics) to decide on how such \ndata would be handled. This analysis can be viewed in Appendix 23, and shows that on the whole, \nmissing data was very low (generally <5%). Items that were not applicable to some respondents \nshowed a higher amount of missing data (i.e. severity of period pain = 7.5%, and effectiveness of \nmedication = 39.8%). The item ‘length of cycle’ showed the highest amount of missing data (60%), as \nmany ticked ‘don’t know’ or ‘irregular’. This item was therefore not used in any inferential statistics.  \nAs explained above, SPSS was used for the data analysis, which removes missing cases listwise by \ndefault (removes from the analysis the entire case if it contains missing data for a variable of \ninterest). In the current study, this approach was adopted, rather than an alternative such as \nimputation methods, because the amount of data missing was negligible (usually 0.2 - 5%), or \nbecause those answers were left blank because they were not applicable, and so to give a \nmean/median/mode response would be incorrect (Mirzaei et al., 2022).  \n  \n\n173 \n \nChapter 9. Study 2: Results  \n9.1 Introduction \nThis chapter details the findings of Study 2, which aimed to explore the experiences of menstruation \nin an adolescent sample, the menstrual symptoms they perceive to be ‘typical’, and their awareness \nof the symptoms and definition of endometriosis. The chapter begins with an outline of the response \nrate and characteristics of the survey sample. Following this, the chapter will aim to address the study \nresearch questions, as outlined in Section 8.2. \n \n9.2 Response Rate \nTable 9.1 shows the participant response rate at each school. The overall response rate was an \nestimated 53.0%. Schools B and C used opt -out parental consent, and both received very few non -\nconsent forms from parents. Despite collecting data at multiple time points, schools reported that \nsome of the data collection coincided with exams and other school events, which was likely to explain \nwhy some eligible students were not able to participate. School staff at both locations were unable to \nprovide exact figures for how many students chose not to participate, hence why the overall response \nrate is estimated. At school A, all those who took part had obtained parental consent. Reasons for \nnon-consent from parents were not obtained, and therefore it is unclear whether it was the parent’s \nchoice for their daughter not to participate, or if the student chose not to participate, and therefore \ndid not obtain parental consent.  \nTable 9.1: Response Rate Within Schools \nSchool Number of \nEligible Students \nParental consent \ntype \nNumber of parents \nnot giving consent \nFinal Sample \nsize (n) \nResponse \nrate (%) \nA 104 Opt-in all ages 75 29 27.9 \nB 450 a Opt-out under 16s 3 215 47.8 \nC 272 Opt-out under 16s 1 194 71.3 \naApproximate number \n \n \n9.3 Participant Characteristics \nThe sample consisted of 442 girls aged 15 to 19 years, with a median age of 17.00 years. The full \ndemographic information of the sample is shown in  Table 9.2. Almost half of the participants were \nAsian (49.1%), just over a third were White (35.8%), and a minority were Black and Mixed-Race (15.1% \ntotal). Compared to census data for England (Office for National Statistics, 2011), this sample is over-\n\n174 \n \nrepresentative of those of Asian ethnicity (census = 7.8%) and under-representative of those of White \nethnicity (census = 85.4%). However, in Birmingham, where the majority of the data was collected, it \nis more ethnically diverse than in England as a whole  (i.e. Asian ethnicity = 26.6%, White ethnicity = \n57.9%) (Office for National Statistics, 2011) . Furthermore, the ethnic diversity in this sample is likely \nto have been influenced by the  location of one of the schools, which recruited almost half of the \nsample, as it is in an area of Birmingham in which 60.1% of inhabitants are of Asian ethnicity and 11.6% \nare of White ethnicity (Office for National Statistics, 2011), which was reflected in the data from that \nschool. The other two schools were independent schools  (one of which was a boarding school) , and \ntherefore they may have been less likely to be affected by the demographics of the immediate area. \nTable 9.2: Demographic Characteristics of the Sample \n Sample \nAge (in years): Median 17.00 \n  Range 15.00 – 19.33 \nEthnicity n (%): \n White \n Black \n Asian \n Mixed Race \n \n154 (35.8) \n46 (10.7) \n211 (49.1) \n19 (4.4) \nReligion n (%): \n Christian \n Buddhist \n Hindu \n Jewish \n Muslim \n Sikh \n None/Atheist/Agnostic \n Mixed/Other \n \n130 (29.4) \n9 (2.0) \n18 (4.1) \n2 (0.5) \n102 (23.1) \n40 (9.0) \n112 (25.3) \n7 (1.6) \nSchool Type n (%) \n Independent Girls \n Independent Mixed Boarding \n State Academy Mixed \n N/A (pilot participants) \n \n29 (6.6) \n194 (43.9) \n215 (48.6) \n6 (0.9) \n  \n9.4 Participants’ Menstrual Experiences \n9.4.1 Menarche and Menstrual Bleeding Patterns \nAt the time of survey completion, all but 2 participants had started their periods (440/442, 99.5%). As \nshown in Table 9.3, the median age of menarche for the sample was 12.50 years (12 years, 6 months), \nand ranged from 6 .00 to 16.42 years. While age 6 to 8 years may be deemed young for menarche, \nthese responses were not considered to be mistakes/anomalies, as there is some evidence that \nmenarche can occur this ear ly, and they may represent those with precocious puberty (Cesario and \nHughes, 2007).  \n\n175 \n \nTable 9.3: Menstrual Bleeding Patterns \n Median/number Range/Percentage \nAge at first period (years) (n=433) 12.50 6.00 – 16.42 \nDuration of menstrual bleeding (days)  \n All responses (n=438) \n Responses between 2 and 10 days (n=429) \n \n5.00 \n5.00 \n \n0 – 31 \n2 - 10 \nDuration of menstrual cycle (days) \n All responses (n=214) \n Responses between 14 and 45 days (n=177) \n \nRegularity of menstrual cycle: (n=409) \n Irregular periods \n Don’t know \n Regular periods \n \n28.00 \n28.00 \n \n \n128 \n121 \n160 \n \n0 - 45 \n14 - 45 \n \n \n31.3% \n29.6% \n39.1% \n \nAs outlined in Section 2.4.1 , the average age of menarche has been shown to differ between \nethnicities. To establish whether these differences existed within this sample, a Kruskal -Wallis Test \nwas conducted. This test indicated that age of first period was significantly different between different \nethnic groups, H(3) = 17.5 44, p = 0.001. Subsequent pairwise comparisons, using a Bonferonni \ncorrection with adjusted p-values, showed that the median menarcheal age for participants who were \nBlack (median=12.00) was significantly lower  compared to White  participants (median=13.00) (p = \n0.001, r = 0.26). In addition, participants who were White had a significantly higher age of menarche \n(median=13.00) compared to those who were Asian (median=12.17) (p = 0.014, r = 0.16). There were \nno other statistically significant differences between t he menarcheal age of any other combinations \nof ethnicities. \nParticipants were asked the usual length of their periods (menstrual bleeding) over the 3 months prior \nto survey completion (see Table 9.3). Answers ranged from 0 to 31 days, however 98.0% of responders \n(429/438) reported their menstrual bleeding to last between 2 and 10 days. Of these, 94.6% reported \nmenstrual bleeding duration of 2 to 7 days, and the median length of bleeding was 5.00 days. A small \nnumber of participants indicated their menstrual bleeding lasted 0 days, some of whom were using \nthe contraceptive pill.  \nThe respondents were asked the usual duration of their menstrual cycle. They cou ld indicate the \nnumber of days and/or tick ‘irregular’ or ‘don’t know’. Just under half of the participants that had \nreached menarche (48.6%, 214/440) recorded a response for the number of days of their cycle, which \nranged from 0 to 45 days. Of these, 17.3% (37/214) reported a cycle length of 2 to 7 days, which was \nlikely to be an error, whereby they reported the length of menstrual bleeding. When excluding those \nresponses, the reported length of the menstrual cycle ranged from 14 to 45 days, with a median length \n\n176 \n \nof 28.00 days, and 98.3% of responses fell between 21 -45 days 3. Irregular menstrual cycles were \nreported by 31.3% (128/409) of responders, and 29.6% (121/409) indicated that they did not know \nthe length of their cycle. Those who provided an answer in the space for ‘number of days’, who did \nnot tick ‘don’t know’ or ‘irregular’ were assumed to have regular menstrual cycles (39.1%). \nAs outlined in section 2.6.3, irregular cycles are quite common when periods first begin, and they tend \nto settle down with time. To assess if this pattern occur red in this sample, a Kruskal-Wallis Test was \nconducted to compare regularity of cycles with the length of time since menarche. This test indicated \nthat the number of years since menarche was significantly different between those reporting regular, \nirregular, or unknown menstrual cycles , H(2) = 7.08, p = 0.029. Subsequent pairwise comparisons, \nusing a Bonferonni correction with adjusted p-values, showed that the number of years  since \nmenarche was significantly higher when periods were regular (median=4.75) compared to when they \nwere irregular (median=4.08) (p = 0.023, r = 0.16). There were no other significant differences. \nN.B. Subsequent analysis using the variables ‘length of period’ and ‘length of menstrual cycle’ will use \nthe data for those reporting a period length between 2 to 10 days and a cycle length between 14 to 45 \ndays, as it is unclear whether data falling outside of these perimeters are outliers or errors. \n \n9.4.2 Experience of Period Pain \nParticipants’ experiences of period pain are shown in Table 9.4. Period pain was reported by 93.6% of \nresponders (411/439). Of those, 46.2% (190) reported pain every month, and 53.8% (221) reported \npain some months. Participants were asked to rate their pain severity o n a scale from 0 to 10. \nFollowing the method used by Parker (2006), these responses were categorised into ‘no/mild pain’ \n(answers 0 to 3), ‘moderate pain’ (4 -7), and ‘severe pain’ (8 -10). Over half of the responders \nexperienced ‘moderate pain’ (54.8%) and almost one third experienced ‘severe pain’ (31.3%). \nMany participants took medication for their period pain (266/416, 63.9%). Of those , the most used \nanalgesic was paracetamol (72.2%), followed by ibuprofen (47.4%). Some participants used the free \nresponse option ‘other’ to report the medications they had tried. The most used ‘other’ medications \nwere prescribed NSAIDs (including Mefenamic Acid), and Buscopan. One responder had used \ntramadol for her period pain. Participants were asked to rate the effecti veness of their chosen \nmedication on a scale from 0 to 10. Again, following the method used by Parker (2006) , these \nresponses were categorised into ‘low effectiveness’ (answers 0 to 3), ‘moderate effectiveness’ (4 -7), \n \n3 Menstrual cycles ranging from 21-45 days are considered typical during adolescence (ACOG Committee on \nAdolescent Health Care, 2015). \n\n177 \n \nand ‘high effectiveness’ (8-10). Over half of the responders indicated ‘moderate effectiveness’ (53.6%) \nand over a third indicated ‘high effectiveness’ (31.3%). \nN.B. Subsequent analysis using th e data on the experience of period pain  will combine those who \nanswered ‘pain every month’ and ‘pain some months’, and compare them with those who did not \nreport period pain. Thus, it will not distinguish between the frequency of period pain. \nTable 9.4: Experience of Period Pain and Use of Medication \n Number (n) Percentage (%) \nPeriod pain experienced   (n=439) \n Of which:  Pain every month \n   Pain some months \n411 \n190 \n221 \n93.6† \n46.2 \n53.8 \nPeriod pain on a scale of 0 to 10   (n=409) \n   No/mild pain (0-3) \n   Moderate pain (4-7) \n   Severe pain (8-10) \n \n57 \n224 \n128 \n \n13.9 \n54.8 \n31.3 \nMedication is taken for period pain   (n=416) \n Of which: Paracetamol \n   Ibuprofen \n   Aspirin \n   Feminax \n   Other \n266 \n192 \n126 \n5 \n18 \n44 \n63.9† \n72.2 \n47.4 \n1.9 \n6.8 \n16.5 \n Responses to ‘Other’ medication taken  (n=44)   \n   Prescribed NSAID \n   Buscopan \n   Over the counter painkillers \n   Tranexamic acid \n   Contraceptive pill \n   Prescribed medication   \n   unspecified \n   Migraine medication \n   Tramadol \n   Other \n \n13 \n10 \n4 \n5 \n3 \n \n4 \n1 \n1 \n3 \n \n4.9 \n3.8 \n1.5 \n1.9 \n1.1 \n \n1.5 \n0.4 \n0.4 \n1.1 \nEffectiveness of medication for period pain on a scale of 0 to 10   \n(n=250) \n  Low effectiveness (0-3) \n  Moderate effectiveness (4-7) \n  High Effectiveness (8-10) \n \n \n30 \n142 \n93 \n \n \n11.3 \n53.6 \n35.1 \n†Figures shown in bold are the total number/percentage who answered ‘yes’ to the question, figures not in bold are \npercentages within those who answered ‘yes’. \n \n \n9.4.3 School Absence Due to Periods \nData collected on school absence due to periods is shown in  Table 9.5. Almost a quarter of \nrespondents stated they had missed school due to their period (22.7%: 100/440). Of these, 95 had \nmissed school some months and 5 had missed school every month. Sixty -eight participants reported \non the number of school days m issed per month; the majority missed 1 day, and 2 days was the \n\n178 \n \nmaximum reported. Of those who missed school, the reason most often ticked was that their period \nwas ‘too painful’ (90.6%), followed by nausea (37.5%), and heavy bleeding (24.5%). Participants were \nable to tick more than one response option. \nTable 9.5: School Absence Due to Periods \nSurvey Item Number (n) Percentage (%) \nSchool is missed due to periods (n=440) \n Of which:  Missed every month \n   Missed some months \n100 \n5 \n95 \n22.7† \n5.0 \n95.0 \nDays missed per month:    \n(n=68)   0.5 days \n   1 day \n   1.5 days \n   2 days \n \n4 \n56 \n4 \n4 \n \n \nReason school is missed:    \n(n=100)   Too painful \n   Blood flow too heavy \n   Nausea \n   Sickness \n   Othera \n \n91 \n25 \n37 \n21 \n15 \n \n91.0 \n25.0 \n37.0 \n21.0 \n15.0 \n† Figures shown in bold are the total number/percentage who answered ‘yes’ to the question, \nfigures not in bold are percentages within those who answered ‘yes’. \na Other reasons for missing school included dizziness/fainting (6), migraines (3) and tiredness (5) \n \nN.B. Subsequent analysis using this data  on school absence , will only compare those who answered \n‘yes’ with those who answered ‘no’, and will not distinguish between the frequency of school absence.  \n \n9.4.4 Contraceptive Pill Use \nFew respondents (60/439: 13.7%) had used the contraceptive pill at some time in their life, and 31 of \nthose were using it currently. Of those to have ever used the contraceptive pill, 27 (45%) had taken it \nto regulate periods, 34 (56.7%) to prevent pregnancy, 25 (41.7%) to help with period pain, and 10 \n(16.7%) to help with spots/acne. Two parti cipants ticked ‘other’ and stated that they had taken it to \ndelay their period. Participants were able to tick more than one response for their reason for  \ncontraceptive pill use. \n \n9.5 Seeing a Doctor About Periods \nAlmost a third of the sample reported they had visited a doctor about their periods (130/441, 29.5%). \nThe outcome of the doctor’s visit for the majority was that they were given medication or told to \nreturn if problems persisted (see  Table 9.6). A small number of participants were referred to a \n\n179 \n \nspecialist (11/130, 8.5%) or for further investigation (5/130, 3.8%). Of those who responded ‘other’, \nmost (11/19) stated they were told their periods were fine or normal. When asked if they felt \nreassured after their visit, 72.1% (93/129) stated they did. Of the 27.9% who did not feel reassured, \nthe main reason given was that their symptoms were not resolved. \n \nTable 9.6: Seeing a Doctor About Periods \n Number (n) Percentage (%) \nHave ever visited a doctor about periods   (n=441) 130 29.5 \nResult of visiting doctor†: \n(n=130)   Given medication \n   Sent to see specialist \n   Told to come back if problem persists \n   Other: \n \n65 \n11 \n51 \n19 \n \n50 \n8.5 \n39.2 \n14.6 \n  Responses to ‘Other’:    \n  (n=19) Told it was fine/normal \n   Sent for further investigation \n   Given a diagnosis \n   Other \n \n11 \n5 \n1 \n2 \n \n8.5 \n3.8 \n0.8 \n1.5 \nReassured following doctors visit (n = 129) \n   Yes \n   No \n \n93 \n36 \n \n72.1 \n27.9 \n  Reason for not feeling reassured: (n=28) \n   Symptoms not resolved \n   Symptoms dismissed or normalised \n   Lack of information or explanation  \n   given \n   Medication not effective \n   No treatment offered \n \n11 \n4 \n6 \n \n3 \n4 \n \n39.3 \n14.3 \n21.4 \n \n10.7 \n14.3 \n†Participants could tick multiple answers, and therefore these responses do not add up to 100% \n \nThere was a significant association between visiting a doctor about periods and missing school due to \nperiods χ²(1) = 26.712, p < 0.001. Inspection of the standardised residuals indicated that if participants \nhad missed school due to periods, significantly more of them than expected ( z = 3.3) had visited a \ndoctor about periods, and significantly fewer of them than expected (z = -2.5) had not visited a doctor \nabout their periods. If participants had not missed school due to periods, significantly fewer of them \nthan expected had seen a doctor about periods (z = -2.1). The association was moderate, Cramer’s V \n= 0.246, p < 0.001 (Cohen, 1988).  \n \n9.6 Pain Severity and Menstrual Related Behaviours \nTo further characterise the experience of menstruation in this  sample, and to compare to previous \nresearch, s tatistical analysis was conducted to examine the associations between participants’ \n\n180 \n \nseverity of period pain, and their menstrual related behaviours (see Table 9.7). There was a significant \nassociation between missing school due to periods and pain severity ratings χ²(2) = 49.776, p < .001. \nInspection of the standardised residuals indicated that among participants who reported their period \npain as severe, significantly more of them than expected had missed school due to periods ( z = 4.9) \nand significantly fewer of them than expected had not missed school due to periods (z = -2.8). Among \nparticipants who reported their period pain as mild or moderate, significantly fewer of them than \nexpected had missed school due to their period (z = -2.9 and z = -2.3 respectively). The association was \nstrong, Cramer’s V = 0.349, p < 0.001 (Cohen, 1988). \n \nTable 9.7: Association Between Pain Severity and Menstrual Related Behaviours \n Pain Severity  \nSignificance No/mild Moderate Severe \nMedication taken for period pain, n (%) \n Yes \n No  \n \n18 (31.6) \n39 (68.4) \n \n133 (40.6) \n91 (59.4) \n \n112 (87.5) \n16 (12.5) \n \n \np < 0.001 \nMissed school due to periods, n (%) \n Yes \n No \n \n3 (5.3) \n54 (94.7) \n \n37 (16.5) \n187 (83.5) \n \n58 (45.3) \n70 (54.7) \n \n \np < 0.001 \nEver seen a doctor about periods, n (%) \n Yes \n No \n \n11 (19.3) \n46 (80.7) \n \n60 (26.8) \n164 (73.2) \n \n46 (35.9) \n82 (64.1) \n \n \np = 0.046 \nEver taken the contraceptive pill, n (%) \n Yes \n No \n \n8 (14.0) \n49 (86.0) \n \n24 (10.7) \n200 (89.3) \n \n23 (18.1) \n104 (81.9) \n \n \np = 0.148 \n \nThere was a significant association between taking medication for period pain and pain severity ratings \nχ²(2) = 58.968, P < .0 01. Inspection of the standardised residuals indicated that among participants \nwho reported their period pain as severe, significa ntly more of them than expected had taken \nmedication for period pain ( z = 3.3) and significantly fewer of them than expected had not taken \nmedication for period pain ( z = -4.4). Among participants who reported their period pain as mild, \nsignificantly fewer  of them than expected had taken medication for period pain ( z = -3.1) and \nsignificantly more of them than expected had not taken medication for period pain ( z = 4.1). The \nassociation was strong, Cramer’s V = 0.380, p < 0.001 (Cohen, 1988). \nThere was a significant association between visiting a doctor for periods and pain severity ratings χ²(2) \n= 6.150, p = 0.046. Inspection of the standardised residuals indicated that among participants who \nreported their period pain as severe, more of them than expected had visited a doctor about periods, \nbut this fell just below significance at the 0.05 level (z = 1.6). The association was small, Cramer’s V = \n0.123, p = 0.046 (Cohen, 1988). There was no association between taking the contraceptive pill and \npain severity ratings χ²(2) = 3.819, p = 0.148. \n\n181 \n \n9.7 Perceived Typicality of Periods \nParticipants were asked whether they thought their periods were typical for someone their age. In \ntotal, 434 participants responded; 274 (63.1%) answered ‘yes’; 44 (10.1%) answere d ‘no’, and; 116 \n(26.7%) answered ‘unsure’. Further analysis was conducted using this data, to compare the menstrual \ncharacteristics of participants who answered ‘yes’, ‘no’, or ‘unsure’ (see Table 9.8). \n \nTable 9.8: Comparisons of Characteristics of Menstrual Experiences by Perceived Typicality of \nPeriods \n Do you consider your periods to be typical \nfor someone your age? \n \n \nSignificance Yes No Unsure \nAge (years) \n Median \n \n17.08 \n \n17.08 \n \n17.00 \n \np = 0.396 \nAge of Menarche (years) \n Median \n \n12.67 \n \n12.58 \n \n12.17 \n \np = 0.068 \nLength of Period⁺ (days) \n Median \n \n5.00 \n \n6.00 \n \n5.00 \n \np = 0.302 \nRegularity of Menstrual Cycles, n (%) \n Regular \n Irregular \n Unknown \n \n117 (46.6) \n56 (22.3) \n78 (31.1) \n \n11 (25.0) \n30 (68.8) \n3 (6.8) \n \n29 (26.9) \n39 (36.1) \n40 (37.0) \n \n \n \np < 0.001 \nPeriod Pain, n (%) \n Yes \n No  \n \n255 (93.1) \n19 (6.9%) \n \n41 (93.2) \n3 (6.8) \n \n110 (94.8) \n6 (5.2) \n \n \np = 0.807 \nSeverity of Period Pain, (scale 0-10) \n Median \n \n6.00 \n \n7.00 \n \n7.00 \n \np = 0.003 \nMedication taken for Period Pain, n (%) \n Yes \n No  \n \n154 (59.5) \n105 (40.5) \n \n33 (80.5) \n8 (19.5) \n \n74 (67.3) \n36 (32.7) \n \n \np = 0.022 \nEffectiveness of medication taken for \nperiod pain (scale 0-10) \n Median \n \n \n7.00 \n \n \n5.00 \n \n \n6.00 \n \n \np = 0.005 \nMissed school due to periods, n (%) \n Yes \n No \n \n58 (21.2) \n216 (78.8) \n \n12 (27.3) \n32 (72.7) \n \n27 (23.3) \n89 (76.7) \n \n \np = 0.640 \nEver taken the contraceptive pill, n (%) \n Yes \n No \n \n30 (10.9) \n244 (89.1) \n \n12 (27.3) \n32 (72.7) \n \n16 (13.9) \n99 (86.1) \n \n \np = 0.013 \nEver seen a doctor about periods, n (%) \n Yes \n No \n \n60 (21.9) \n214 (78.1) \n \n29 (65.9) \n15 (34.1) \n \n37 (31.9) \n79 (68.1) \n \n \np < 0.001 \nNotes: Continuous data: Kruskal-Wallis tests, Nominal data: Chi-squared tests \n⁺Length of period includes those reporting a length between 2 and 10 days \n \n\n182 \n \n9.7.1 Significant Findings \nChi-squared tests were conducted to identify any associations between perceived typicality of periods \nand nominal variables. There was a statistically significant association between perceived typicality of \nperiods and regularity of menstrual cycle, χ²(2) = 46.42, p < 0.001. Inspection of the standardised \nresiduals indicated that among participants reporting irregular cycles, significantly more of them than \nexpected thought their periods were not typical ( z = 4.4). The association was moderate, Cramer’s V \n= 0.240, p <0.001. \nThere was a significant association between taking the pill and perceived typicality of periods χ²(2) = \n8.75, p < 0.05. Inspection of the standardised residuals indicated that among participants who took \nthe contraceptive pill, significantly more of them than expected reported that their periods were not \ntypical (z = 2.5). The association was small, Cramer’s V = 0.142, p = 0.013 (Cohen, 1988). \nThere was a significant association between taking medication for period pain and perceived typicality \nof periods χ²(2) = 8.75, p < 0.05. An inspection of the standardised residuals indicated that among \nparticipants who had not taken medication for period pain, fewer of them than expected indicated \nthat their periods were not typical, but this fell just below significance at the 0.05 level (z = -1.8). The \nassociation was small, Cramer’s V = 0.136, p = 0.022 (Cohen, 1988). \nThere was a significant association between visiting a doctor for periods and perceived typicality of \nperiods χ²(2) = 36.272, p < 0.001. Inspection of the standardised residuals indicated that among \nparticipants who had visited a doctor, significantly more of them  than expected reported that their \nperiods were not typical (z = 4.5), and significantly fewer of them than expected indicated that their \nperiods were typical (z = -2.2). Among participants who had not visited a doctor about their periods, \nsignificantly fewer of them than expected indicated that their periods were not typical (z = -2.9). The \nassociation was moderate, Cramer’s V = 0.289, p < 0.000 (Cohen, 1988). \nKruskal-Wallis tests were conducted to determine any differences between perceived typicality of \nperiods based on continuous or ordinal data.  This test indicated that pain severity ratings were  \nsignificantly different between the perceived typicality of periods groups, H(2)=11.62, p = 0.003. \nPairwise comparisons with adjusted p-values (using the Bonferroni correction) showed that the pain \nratings for those who thought their periods were typical (median=6) was significantly lower compared \nto both those that thought their periods were not typical (median=7) ( p = 0.04, r = -0.16) and those \nthat were unsure (median=7) (p = 0.15, r = -0.13).  \nA Kruskal-Wallis test indicated that the reported effectiveness of medication was significantly different \nbetween the perceived typicality of periods groups, H(2)=10.465, p = 0.005. Pairwise comparisons with \n\n183 \n \nadjusted p-values (using the Bonferroni correction) showed that the medication effectiveness rating \nof those who thought their perio ds were typical (median=7) was significantly higher compared to \nthose that thought they were not typical (median=5) (p = 0.02, r = 0.20).  \n \n9.7.2 Multinomial Logistic Regression \nThe results of the above analyses were used to select variables to be entered into a  multinomial \nlogistic regression model. Variables which were significant at the p<0.05 were included in the model. \nMultinomial logistic regression analysis allows us to identify which of these variables is independently \nassociated with perceived typicality of periods, when controlling for all other variables, and therefore \nto generate a model, upon which predictions can be made about group membership (typical vs. not \ntypical vs. not sure). Therefore, multinomial logistic regression was performed to assess the impact of \nregularity of cycles, severity of period pain, use of medication for periods, use of the contraceptive pill \nand if ever visited a doctor about periods, on the likelihood that participants would perceive their \nperiods as typical. ‘Effectiveness  of Medication’ was not included in the model; there was a large \namount of ‘not applicable’ responses for this item, because all those who had answered ‘No’ to taking \nmedication for pain (150) did not have a response for effectiveness of medication and were therefore \ntreated as missing. As the regression model would have taken out all those with missing d ata, the \ninclusion of this item would have produced a smaller model, which would not have included anyone \nwho did not take medication for pain.  \nAs outlined above, a multinomial logistic regression analysis can explore how the independent \nvariables will affect the probability of an outcome on the dependent variable. To perform this analysis, \nthe largest value of the dependent variable, ‘periods are typical’, was used as the reference category. \nBy using this model, we can identify how ‘periods are not typica l’ and ‘unsure if periods are typical’ \ndiffer from the reference category. The independent variables which are nominal also needed a \nreference category. Those which were dichotomous (medication taken for pain, history of \ncontraceptive pill use, and ever vi sited a doctor for periods) had the reference category ‘no’. For \nregularity of cycles, in which the categories were ‘irregular’, ‘unknown regularity’ or ‘regular’, the \nreference category was ‘regular’. The results of the multinomial logistic regression are shown in Table \n9.9. \nThe full model containing all predictors was statistically significant χ 2(12) = 83.295,  p < 0.001. The \nmodel explained 23.8% (Nagelkerke R2) of the variance in perceived typicality of periods and correctly \nclassified 64% of cases. The likelihood ratio tests indicated that pain severity, regularity of cycles, and \never visiting a doctor about periods were all significant predictors to the model ( p < 0.05). Taking \n\n184 \n \nmedication for pain, and history of contraceptive pill use were not significant in predicting the \ndependent variable ( p > 0.05) and did not enhance the capability of the model to predict group \nmembership. As stated previously, part of the theoretical basis for using logistic regression techniques \nis that confounding variables can be controlled, whilst observing the relationship between other \nvariables in the model. It is likely that the non-significance of the variables ‘taking medication for pain’ \nand ‘history of contraceptive use’ was due to this issue (e.g., those who had taken the contraceptive \npill might have been likely to also have seen a doctor about periods).  \nTable 9.9: Multinomial Logistic Regression Analysis Showing Factors Predicting Perceived Typicality \nof Periods \n B Wald Exp(B) \nPeriods are Not Typical    \nPain Severity 0.113 1.508 1.119 \nIrregular Cycles 1.812*** 16.211 6.112 \nUnknown Regularity of Cycles -0.440 0.394 0.644 \nMedication taken for pain 0.456 0.855 1.577 \nHistory of contraceptive pill use 0.903 3.632 2.467 \nEver Visited a Doctor for Periods 1.550*** 14.972 4.711 \nUnsure if periods are Typical    \nPain Severity 0.195** 9.520 1.216 \nIrregular Cycles 1.015** 10.145 2.758 \nUnknown Regularity of Cycles 0.829** 7.550 2.291 \nMedication taken for pain -0.115 0.161 0.891 \nHistory of contraceptive pill use 0.022 0.003 1.022 \nEver Visited a Doctor for Periods 0.366 1.627 1.442 \nNotes: R2 = 0.238 (Nagelkerke), Model χ²(12) = 83.298, p < 0.001,  \n*p < 0.05, **p < 0.01, ***p < 0.001 \nReference category is Periods are Typical \n \nAn examination of the parameter estimates allows a better understanding of the significant \npredictors. Participants wit h irregular periods were 6.1 times more likely than those with regular \nperiods to state that their periods are not typical for someone their age, in comparison with the \nreference group (periods are typical). In addition, participants who had visited a doct or for their \nperiods were 4.7 times more likely than those who have not visited a doctor to state that their periods \nare not typical for someone their age, in comparison with the reference group (periods are typical).  \nAn increase in severity of pain was a ssociated with an increase of the likelihood of being unsure of \ntypicality of periods, compared to those who perceive periods as typical. Participants with irregular \ncycles were 2.8 times more likely than those with regular cycles to say they were unsure if their periods \nare typical, in comparison with the reference category (periods are typical). Finally, participants who \ndid not know their regularity were 2.3 times more likely than those with regular cycles to say they \nwere unsure if their periods are typ ical, in comparison with the reference category (periods are \ntypical). \n\n185 \n \n9.8 Attitudes and Communication \n9.8.1 Attitudes Towards Periods \nParticipants were asked their overall attitude towards periods, and 431 responded to this question. \nOut of these, 8.1% (35) ticked ‘positive’, 37.6% (162) ticked ‘negative’, and 54.3% (234) ticked ‘don’t \nmind’. \nParticipants were also asked to respond to several attitude statements about periods, using a 7-point \nLikert scale, ranging from 1 – strongly disagree, to 7 – strongly agree. The frequency in the range of \nthe responses for each statement is shown in  Figure 9.1. In general, attitude items with a more \nnegative stance, such as ‘Menstruation is something I just have to put up with’, were commonly \nskewed to the right, indicating more agreement with the statement, and attitude items with a positive \nstance, such as ‘Menstruation is something to be happy about’, were commonly skewed to the left, \nindicating more disagreement with the statement. In particular, there was a high level of consensus \namongst participants on the item ‘Menstruation is something I just have to put up with’. However, the \nitem ‘When I have my period, I am worried that I’ll have an accident’ indicated more varying views. \nMore analysis was done using the results of these questions in Sections 9.9 and 9.10.  \n \n\n \n186 \n \n0\n5\n10\n15\n20\n25\n30\n35\n40\n45\n50\nMenstruation is\nsomething I just have\nto put up with\n(n=439)\nWomen are more\ntired than usual\nwhen they are\nmenstruating\n(n=440)\nMenstruating is a\nsign of womanhood\n(n=440)\nMenstruation can\nadversely affect my\nperformance in sport\n(n=437)\nI envy boys because \nthey don’t have \nmenstruation \n(n=438)\nMenstruation is\nsomething to be\nhappy about\n(n=439)\nWhen I have my \nperiod, I am worried \nthat I’ll have an \naccident (n=437)\nI am more easily\nupset during my\nperiod that at other\ntimes of the month\n(n=436)\nPercentage %\nAttitude Item\n1 - Strongly Disagree\n2\n3\n4 - Don't Mind\n5\n6\n7 - Strongly Agree\nFigure 9.1: Frequency of Participant Responses on Menstrual Attitude Questions \n\n \n187 \n \n9.8.2 Communication About Periods \nParticipants were asked to indicate their first information source about menstruation prior to the \nonset of menarche (see Figure 9.2). The most frequent response was their mother (43.2%), followed \nby school (24.7%). Three participants stated they had not received any information about periods prior \nto their onset. \nFigure 9.2 also displays the results of the question ‘If you wanted more information about periods, \nwho would you approach first?’ Again, mothers were the most frequent response (34.8%). In \ncomparison to how many responders had received initial information at school, they indicated a much \nlower tendency to seek further information from someone at school, with only 2.7% stating school as \na preferred source. Almost a third of responders (30.5%) reported that they would use the internet \nfor further information about periods and only 4.8% indicated that they would ask a doctor. \n \nFigure 9.2: Sources of Information about Menstruation \n \n \nParticipants were asked how comfortable they were in discussing menstruation with different family \nmembers and friends. The results of this question are displayed in  Figure 9.3. When excluding those \n0\n5\n10\n15\n20\n25\n30\n35\n40\n45\n50Percentages\nInformation Sources\nBefore periods began\nIf more information sought in\nfuture\n\n \n188 \n \nwho answered N/A, responses for female friends and relatives tended to skew to the left (indicating \nmore comfort) and responses for male friends and relatives tended to s kew towards the right \n(indicating more discomfort). Responses also indicated higher levels of comfort discussing periods \nwith friends compared to family members. This was true for both female friends compared to female \nfamily members and male friends compared to male family members. \n \nFigure 9.3: Comfort Level in Discussing Menstruation with Family and Friends \n \n \n9.9 Awareness of Endometriosis \nWhen asked ‘Do you know what endometriosis is?’, 10.1% (44/437) answered  ‘yes’, and 89.9% \n(393/437) answered ‘no’. Those who answered ‘yes’ (44) were asked to provide a description of \nendometriosis in their own words, however 46 provided such, including 1 who answered ‘no’ to if they \nknew what endometriosis was, and 1 who did not answer that question. These descriptions were \ncoded and subsequently categorised into description types, the frequencies of which are shown in  \nTable 9.10. The descriptions provided by participants were largely based on symptoms (14/46), the \nbiological mechanisms involved in endometriosis (11/46), or a combination of both (11/46). Pain as a \n0\n10\n20\n30\n40\n50\n60\n70\nFemale Relative Male Relative Female Sibling Male Sibling Female Friend Male Friend\nPercentage\nPeople you might discuss periods with\nVery Comfortable\nComfortable\nDon't mind\nUncomfortable\nVery Uncomfortable\nN/A\n\n \n189 \n \nsymptom was mentioned by 50% (23/46) of the participants who described endomet riosis and was \ntherefore the most frequently occurring descriptor of endometriosis. Other symptoms mentioned \nwere heavy bleeding (5/46), painful intercourse (2/46), irregular/unusual periods (2/46) and infertility \n(1/46). The definitions which included bio logical mechanisms were often based on the lining of the \nwomb appearing elsewhere (15/46) and blood being unable to leave the body (5/46). \nSome of the descriptions given were quite vague or did not quite capture any element of the definition \nof endometriosis. For example, 5 responders’ descriptions were simply of a period, and 4 responders’ \ndescriptions could be categorised as ‘something to do with a period’, which was likely to have been \nobvious given the nature of the rest of the survey, which they had already completed by this point. \n \nTable 9.10: Examples of Participants Descriptions of Endometriosis \nCategory Description Type  Total Sample  \n(n = 46) \nExample free response answer \n1 Symptoms only  14 Highly intense period pain, stops you being able \nto move is so painful \n2 Biological mechanisms \nonly  \n11 It’s the lining of a womb which can also form in \nother places \n3 Symptoms and biological \nmechanisms  \n11 The cells in the lining of the uterus appear in \nother reproductive organs such as ovaries. This \ncauses pain and can lead to infertility \n4 Something to do with \nperiods \n4 It affects some women and not all. It's to do with \nyour periods \n5 Description of a period 5 The lining in uterus breaking d own which results \nin blood being released during the period \n6 Other 1 Other parts of the tissues be have as the lining of \nthe womb, e.g. egg can be fertilised in the \nfallopian tube and begin to grow \n \nParticipants who stated that they knew what endometriosis was were also asked to indicate how they \nknew. Forty -three participants responded; the response options and frequency of responses are \nshown in Figure 9.4. Almost half of the participants (21/43) knew about endometriosis from the \ninternet and the media. \n \n\n \n190 \n \nFigure 9.4: Information Sources about Endometriosis \n \n \n9.9.1 Participant Characteristics and Their Awareness of Endometriosis \nFurther analysis was conducted on the data collected about participants’ awareness of endometriosis, \nto enable comparisons between the characteristics of participants based on their awareness . To run \nthis analysis, a new variable was formed; ‘knowledge of endometriosis’, which was based on the coded \nand categorised descriptions of endometriosis that were outlined about in Table 9.10. The researcher \nand one supervisor independently coded responses and reached agreement on the final categories. \nFollowing this, to enable further analysis, those respondents who gave descriptions coded into \ncategories 1, 2 and 3, were considered to have given descriptions demonstrating some knowledge of \nendometriosis, and were grouped together to form the new category ‘Yes’ (i.e. yes, they do know). \nThose whose descriptions were coded into categories 4, 5, and 6 were considered to have given an \ninaccurate description of endometriosis, and were grouped together, along with those who indicated \nthat they did not know what endometriosis was, to form the new category ‘No’ (i.e. no, they do not \nknow). These two new categories together for m the dichotomous categorical dependent variable, \n‘knowledge of endometriosis’. There were 36 participants in the ‘yes’ group (8.2%) and 402 \nparticipants in the ‘no group (91.8%). Table 9.11 shows the results of the further analysis conducted \nwith this variable. \n \n0\n2\n4\n6\n8\n10\n12\n14Number of Responders (n=43)\nHow do you know what endometriosis is?\n\n \n191 \n \nTable 9.11: Comparisons of Characteristics of Participants by Knowledge of Endometriosis \n Knowledge of Endometriosis Significance \nYes No \nAge (years) \n Median \n \n17.25 \n \n17.00 \n \np = 0.057 \nEthnicity, n (%) \n White \n Asian \n Black \n Mixed \n \n16 (44.4) \n14 (38.9) \n4 (11.1) \n2 (5.6) \n \n136 (34.9) \n196 (50.3) \n41 (10.5) \n17 (4.4) \n \n \n \n \np = 0.609† \nSchool Type, n (%) \n Independent Girls \n Mixed Academy \n Independent mixed boarding \n \n2 (5.9) \n13 (38.2) \n19 (55.9) \n \n27 (6.8) \n200 (50.0) \n173 (43.3) \n \n \n \np = 0.359 \nAge of Menarche \n Median \n \n12.00 \n \n12.50 \n \np = 0.012 \nPeriod Pain, n (%) \n Yes  \n \n31 (91.2) \n \n376 (93.8) \n \np = 0.472† \nRegularity of Cycles, n (%) \n Irregular \n Unknown \n Regular \n \n8 (24.2) \n6 (18.2) \n19 (57.6) \n \n119 (32.0) \n112 (32.1) \n141 (37.9) \n \n \n \np = 0.081 \nSeverity of Period Pain (scale 0-10) \n Median \n \n7.00 \n \n6.00 \n \np = 0.014 \nMedication taken for Period Pain, n (%) \n Yes  \n \n26 (81.3) \n \n238 (62.6) \n \np = 0.035 \nMissed school due to periods, n (%) \n Yes \n \n12 (34.3) \n \n86 (21.4) \n \np = 0.081 \nEver taken the contraceptive pill, n (%) \n Yes \n \n10 (28.6) \n \n49 (12.3) \n \np = 0.007 \nEver seen a doctor for periods, n (%) \n Yes \n \n17 (47.2) \n \n113 (28.2) \n \np = 0.017 \nPerception of periods as typical, n (%) \n Yes \n No \n Unsure \n \n18 (52.9) \n7 (20.6) \n9 (26.5) \n \n253 (63.9) \n37 (9.3) \n106 (26.8) \n \n \n \np = 0.107 \nAttitudes about menstruation (median response) a \n Item 1 \n Item 2 \n Item 3 \n Item 4 \n Item 5 \n Item 6 \n Item 7 \n Item 8 \n \n6.00 \n6.00 \n4.50 \n5.00 \n6.00 \n3.00 \n6.00 \n6.00 \n \n6.00 \n6.00 \n5.00 \n5.00 \n5.00 \n3.00 \n5.00 \n6.00 \n \np = 0.094 \np = 0.518 \np = 0.112 \np = 0.578 \np = 0.535 \np = 0.361 \np = 0.228 \np = 0.308 \nPeriods are: n (%) Positive \n   Negative \n   Don’t mind \n5 (15.2) \n12 (36.4) \n16 (48.5) \n30 (7.6) \n150 (38.0) \n215 (54.4) \n \n \np = 0.309 \nContinuous data: Mann-Whitney U tests, Nominal data: Chi-squared tests \n† More than 25% of cells had expected count of less than 5, and therefore a Fishers Exact statistic is reported for 2x2 tables, \nand a likelihood ratio statistic is reported for larger tables. \naItem; 1 = Menstruation is something I just have to put up with; 2 = Women are more tired than usual when they are \nmenstruating; 3 = Menstruating is a sign of womanhood; 4 = Menstruation can adversely affect my performance in sport; 5 = I \nenvy boys because they don’t have menstruation, Item 6 = Menstruation is something to be happy about; 7 = When I have my \nperiod, I am worried that I’ll have an accident; 8 = I am more easily upset during my period than at other times of the month \n \n\n \n192 \n \n9.9.1.1 Significant Findings \nMann-Whitney U tests were conducted to determine any differences between the knowledge of \nendometriosis groups based on continuous or ordinal data.  There was a significant difference in the \nage of menarche between groups; those who had knowledge of endome triosis had a lower age of \nmenarche (Median = 12.00) compared to those who did not have knowledge (Median = 12.50), U = \n4981, z = -2.504, p = 0.012, r = -0.12. There was also a significant difference in the severity of period \npain scores between those who had knowledge of endometriosis (Median = 7.00) compared to those \nwho did not (Median = 6.00), U = 7379.5, z = 2.458, p = 0.014, r = 0.12. All other Mann-Whitney U tests \nwere not significant. \nChi-squared tests were conducted to identify any associations bet ween knowledge of endometriosis \nand key nominal variables. There was a significant association between knowledge of endometriosis \nand use of medication for period pain χ2(1) = 4.445, p = 0.035. This association was small, φ = 0.104, p \n= 0.035 . There was a significant association between knowledge of endometriosis and lifetime \ncontraceptive pill use χ 2(1) = 7.313,  p = 0.007. This association was small, φ = 0.130, p = 0.007. An \ninspection of the standardised residuals indicated that among those participants who had ever used \nthe contraceptive pill, significantly more than expected had knowledge of endometriosis ( z = 2.4). \nFinally, there was a significant association between knowledge of endometriosi s and whether \nparticipants had ever visited a doctor about periods χ2(1) = 5.732, p = 0.017. This association was small, \nφ = 0.115, p = 0.017. An inspection of the standardised residuals indicated that among participants \nwho had visited a doctor, more of them than expected had knowledge of endometriosis, but this fell \njust below significance at the 0.05 level (z = 1.9). All other chi-squared analyses were not significant. \n \n9.10 Education and Communication Preferences About Endometriosis \nAfter the provision of a brief description of endometriosis, the survey required participants to indicate \nwhether they would like to learn more about endometriosis if given the opportunity. As shown in  \nTable 9.12, out of 434 responders to this question, 85.9% answered ‘yes’. When asked their preferred \nway of learning about endometriosis, over half of the responders (51.3%) indicated school as the \npreferred source, via either a lesson or the school nurse. However, when asked who they are \ncomfortable discussing endometriosis with, ex cluding ‘other relatives’, the response option ‘school \nteacher’ was ticked least often by responders. Most participants (82.8%) agreed that they thought \nboys should learn about endometriosis as well. \n \n\n \n193 \n \nTable 9.12: Learning and Communication Preferences about Endometriosis \n Number \n(n) \nPercentage (%) \nWish to learn more about endometriosis:   (n=434) 373 85.1 \nHow would you prefer to learn about it? \n(n=376)   From a parent \n   From a sibling \n   During a lesson at school \n   From the school nurse \n \n40 \n5 \n153 \n36 \n \n10.6 \n1.3 \n40.7 \n9.6 \n    Through the media \n   Through the internet \n   From a doctor \n   From a friend \n23 \n59 \n54 \n6 \n6.1 \n15.7 \n14.4 \n1.6 \nComfortable discussing endometriosis with: (n=437) \n   Parents \n   Siblings \n \n281 \n128 \n \n64.3 \n29.3 \n   Teachers \n   School nurse \n   Doctor \n   Friends    \n   Other Relatives a \n116 \n160 \n192 \n246 \n37 \n26.5 \n36.6 \n43.9 \n56.3 \n8.5 \nDo you think boys should learn about endometriosis too?  \n(n=435)   Yes \n   No \n \n360 \n75 \n \n82.8 \n17.2 \naOther relatives was an open response item and answers given included female relatives (i.e. aunt, \ngrandmother), relatives whose sex was not specified (i.e. grandparent, cousin) and boyfriends. \n \n \n9.10.1 Participant Characteristics and Their Preferences About Further Endometriosis \nEducation  \nFurther inferential analyses were conducted to compare the characteristics of participants based on \ntheir learning preferences regarding endometriosis. The results of these analyses can be found in  \nTable 9.13. \n \n\n \n194 \n \nTable 9.13: Comparisons of Participants’ Characteristics by Learning Preferences for Endometriosis \n Wish to learn more about endometriosis?  \nSignificance Yes No \nAge (years) \n Median \n \n17.08 \n \n16.92 \n \np = 0.450 \nEthnicity, n (%) \n White \n Asian \n Black \n Mixed \n \n125 (34.4) \n183 (50.4) \n39 (10.7) \n16 (4.4) \n \n28 (43.8) \n28 (43.8) \n5 (7.8) \n3 (4.7) \n \n \n \n \np = 0.518 \nSchool Type, n (%) \n Independent Girls \n Mixed Academy \n Independent mixed boarding \n \n29 (7.8) \n187 (50.4) \n155 (41.8) \n \n0 (0.0) \n25 (39.1) \n39 (60.0) \n \n \n \np = 0.004 \nAge of Menarche \n Median \n \n12.33 \n \n13.00 \n \np = 0.005 \nRegularity of menstrual cycles, n (%) \n Irregular \n Unknown \n Regular \n \n108 (31.1) \n98 (28.2) \n141 (40.6) \n \n20 (33.3) \n21 (35.0) \n19 (31.7) \n \n \n \np = 0.382 \nPeriod Pain, n (%) \n Yes \n \n351 (93.9) \n \n57 (91.9) \n \np = 0.575† \nSeverity of Period Pain, n (%) \n Mild \n Moderate \n Severe \n \n42 (12.0) \n196 (56.2) \n111 (31.8) \n \n14 (24.6) \n27 (47.4) \n16 (28.1) \n \n \n \np = 0.039 \nMedication taken for Period Pain, n (%) \n Yes \n \n232 (65.4) \n \n33 (56.9) \n \np = 0.213 \nMissed school due to periods, n (%) \n Yes \n \n89 (23.8) \n \n10 (15.9) \n \np = 0.165 \nEver taken the contraceptive pill, n (%) \n Yes \n \n51 (13.7) \n \n9 (14.3) \n \np = 0.896 \nEver seen a doctor about periods, n (%) \n Yes \n \n111 (29.6) \n \n19 (30.2) \n \np = 0.928 \nPerception of periods as typical, n (%) \n Yes \n No \n Unsure \n \n232 (62.7) \n39 (10.5) \n99 (26.8) \n \n40 (65.6) \n5 (8.2) \n16 (26.2) \n \n \n \np = 0.837 \nAttitudes about menstruation (median response) a \n Item 1 \n Item 2 \n Item 3 \n Item 4 \n Item 5 \n Item 6 \n Item 7 \n Item 8 \n \n6 \n6 \n5 \n5 \n5 \n3 \n5 \n6 \n \n6 \n6 \n5 \n5 \n5 \n2 \n4 \n6 \n \np = 0.913 \np = 0.462 \np = 0.202 \np = 0.147 \np = 0.674 \np < 0.001 \np = 0.181 \np = 0.383 \nPeriods are: n (%) Positive \n   Negative \n   Don’t mind \n34 (9.3) \n131 (35.8) \n201 (54.9) \n1 (1.6) \n30 (47.6) \n32 (50.8) \n \n \np = 0.048 \nContinuous data: Mann-Whitney U tests, Nominal data: Chi-squared tests \n† More than 25% of cells had expected count of less than 5, and therefore a Fishers Exact statistic is reported \naItem; 1 = Menstruation is something I just have to put up with; 2 = Women are more tired than usual when they are \nmenstruating; 3 = Menstruating is a sign of womanhood; 4 = Menstruation can adversely affect my performance in sport; 5 = I \nenvy boys because they don’t have menstruation, Item 6 = Menstruation is something to be happy about; 7 = When I have my \nperiod, I am worried that I’ll have an accident; 8 = I am more easily upset during my period than at other times of the month \n\n \n195 \n \n9.10.2 Significant Findings \nMann-Whitney U tests were conducted to determine any differences between learning preferences \nfor endometriosis based on continuous or ordinal data.  There was a significant difference in the age \nof first period between those who did want to learn more abo ut endometriosis (Median = 12.33) \ncompared to those who did not want to learn more about endometriosis (Median = 13.00), U = 9,025, \nz = -2.79, p = 0.005, r = 0.13. This represents a small effect size.  Groups also differed significantly on \ntheir responses to the attitude item ‘Menstruation is something to be happy about’, U = 16,140 , z = \n4.60, p < 0.001, r = 0.22. The score was significantly higher for the group who did want to learn more \nabout endometriosis (Median = 3) than those who did not want to learn more about endometriosis \n(Median = 2); indicating more agreement with the statement. This represents a moderate effect size. \nChi-squared tests were conducted to identify any associations between learning preferences for \nendometriosis and key nominal variab les. There was a significant association between learning \npreference for endometriosis and school type χ2(2) = 10.936, p = 0.004. Inspection of the standardised \nresiduals indicated that for the school type ‘girls independent’, significantly fewer participa nts than \nexpected did not want to learn more about endometriosis ( z = -2.1), and for the school type ‘mixed \nboarding’, significantly more participants than expected did not want to learn more about \nendometriosis (z = 2.0). The association was small, Cramer’s V = 0.159, p = 0.004 (Cohen, 1988).  \nA chi -squared test also indicated a significant asso ciation between learning preference for \nendometriosis and overall attitude towards periods χ²(2) = 6.080, p = 0.048. Among participants who \nhad a positive attitude towards periods, a significantly higher proportion of them did want to learn \nmore about endo metriosis (9.3%), than the proportion who did not want to learn more about \nendometriosis (1.6%). The association was small, Cramer’s V = 0.119, p = 0.048 (Cohen, 1988).  \n \n9.11 Chapter Summary \nThis chapter has provided a breakdown of the results from the survey completed by adolescent girls \naged 15-19. To address the research questions arising from the literature review, the result s were \nanalysed using both descriptive and inferential statistics where necessary. An overview of the \nmenstrual characteristics of the sample was provided, followed by analysis of girls’ help seeking \nbehaviour, beliefs about the typicality of their period,  attitudes and communication surrounding \nmenstruation, and understanding of endometriosis. These results will be discussed in the following \nchapter, in the context of previous research, and in relation to the key objectives of the study. \n  \n\n \n196 \n \nChapter 10. Study 2: Discussion  \n \n10.1 Introduction \nThis chapter provides a discussion of the findings from the quantitative study. It reflects on the \nresearch questions and objectives of the study and discusses the results in the context of the existing \nliterature. The strengths and limitations of the research are also reviewed. This study aimed to explore \nthe menstrual experience amongst a sample of UK adolescent girls, their perceptions of ‘typical’ \nmenstruation, and their awareness of endometriosis. In addition, it aimed to summarise t heir \nattitudes towards menstruation and their preferences for communicating about it.    \n \n10.2 Menstrual Experiences \n \n10.2.1 Age of Menarche \nThis study characterises the typical menstrual characteristics of a sample of girls aged 15-19 in the \nWest Midlands, UK. The average age of menarche (12.5 years) was slightly lower than recent UK \nestimates (12.9 years: Millenium Cohort Study, 2016). However, this estimate was based on a sample \nmade up of girls of majority White ethnicity (ibid), and the current sample was made up of a higher \nproportion of girls of Asian ethnicity, who  may be more likely to e nter menarche earlier than White \ngirls (Kelly et al., 2017). This was evidenced here, as participants who were White had a significantly \nhigher menarcheal age compared to those who were Asian, and also compared to those who were \nBlack, supporting previous research from the USA (Anderson et al., 2003; Herman -Giddens et al., \n1997). A small proportion (7.6%) of the sample had reached menarche before age 11, , which is similar \nto previous UK findings that a pproximately 9.5% of girls begin to menstruate before the age of 11.2 \nyears (Kelly et al., 2017). Overall, study findings on average age of menarche were comparable with \nprevious research, thus highlighting their validity. \nAverage menarcheal age has implications for menstrual health education (MHE) timing. Evidence \nsuggests that many girls in the UK do not receive their formal school -based MHE until they are in \nsecondary school (Plan International UK, 2018), and thus, menarche occurring before such education \nis received can b e particularly distressing. Furthermore, those who reach menarche at a later age, \nperhaps some years after receiving their MHE, can experience a void of information for many years \n(ibid). This study has highlighted that there can be wide variation in the timing of menarche, with some \ngirls beginning periods before age 9 and others after age 16. Therefore, MHE may need to be ongoing \n\n \n197 \n \nthroughout primary and secondary school, as ‘one off’ education sessions are often not suffice \n(Weckesser et al., 2019). \n \n10.2.2 Menstrual Cycle and Bleeding Length \nMost (94.6%) of those reporting th eir menstrual bleeding length reported a duration of 2 to 7 days, \nand the median length of menstruation was 5.00 days. These figures are consistent with previous \nresearch which found that up to 90% of adolescent girls bleed for 2-7 days (Parker, 2006; Slap, 2003), \nand an average length of menstruation of 5.93 days (Parker, 2006) . Less than half of participants \n(48.6%) provided a response for their cycle length, which ranged from 0 to 45 days. Of these, 17.3% \nreported a cycle length of 2 to 7 days, wh ich was likely to be an error, whereby they mistakenly \nreported the length of a period. A similar proportion of adolescents (19.8%) also made this error in an \nAustralian study (Parker, 2006). These errors may indicate a lack of understanding by adolescents and \nsuggests they may need better education to enable them to differentiate between period length and \ncycle length. When excluding these responses, the reported length of the menstrual cycle ranged from \n21 to 45 days for 98.3% of responders, with a median length of 28.00 days. Most of the girls who \nanswered this question therefore reported a cycle length which is typical during adolescence, between \n21 and 45 days (ACOG Committee on Adolescent Health Care, 2015).  \nIrregular cycles were common amongst this sample, reported by 31.3% of responders. This is high in \ncomparison to previous research with adolescents, in which the prevalence of irregular cycles has \nvaried between 9% (Rigon et al., 2012), 23.1% (Agarwal and Venkat, 2009), and 30.5% (Parker, 2006). \nVariations between studies may be due to sample age differences; for example, participants in Rigon \net al. (2012) had a higher average age, and Agarwal and Venkat (2009) found that increasing age was \nassociated with decreased prevalence of menstrual irregularity. This was also evidenced in the current \nstudy, as those with regular menstrual cycles had a significantly longer time since menarche compared \nto those with irregular cycles. Almost a third of participants (29.6%) did not know the length of their \ncycle; it is unclear whether this was due to a lack of personal monitoring, or a lack of understan ding \nabout the topic. \n \n10.2.3 Period Pain  \nPeriod pain was reported by 93.6% of responders, corroborating findings in Australia, in which 93% of \nadolescents aged 14 -19 (Parker et al., 2010) , and 92% of young women aged 13 -25 (Armour et al., \n2020a) reported period pain. The prevalence was slightly higher than in many other adolescent \n\n \n198 \n \nsamples, which ranged between 68% (Italy: Zannoni et al., 2014) , 73% (Brazil: Pitangui et al., 2013) , \nand 83.2% (Singapore: Agarwal and Venkat, 2009). Two recent international meta-analyses found the \nprevalence of dysmenorrhea in AYW was 71.1% (Armour et al., 2019b)  and 78.5% (Armour et al., \n2019a). The wide variation in dysmenorrhea rates between studies is likely due to different ways of \nmeasuring dysmenorrhea (De Sanctis et al., 20 16). In the present study, the figure (93.6%) includes \nthose who reported pain every month and those who reported pain some months. While clarity on \nhow prevalence rates were deduced is provided in some studies (Armour et al., 2020a; Parker et al., \n2010; Zannoni et al., 2014), most of which also provide a total of all those who responded ‘yes’ to the \noccurrence of period pain at any frequency, for other studies it is unclear. \nAmong participants reporting the presence of period pain, 13.9% rated it as ‘no/mild pain’, 54.8% as \n‘moderate’, and 31.3% as ‘severe’. The rate of severe pain sits in the midst of rates found in past \nresearch, which is reported at 11.6% (Agarwal and Venkat, 2009), 21% (Parker et al., 2010), and 56% \n(Rigon et al., 2012). These wide variations may in part be due to different methods of measuring pain \nseverity. Comparable research with adolescents (aged 14 -19) using the same measure as this study \n(Parker et al., 2010), found no/mild pain was reported by 31%, moderate pain by 48%, and severe pain \nby 21%. Thus, in the current study, rates of ‘no/mild’ pain were lower, and ‘severe’ pain higher. \nArmour et al. (2020a) found corroborating rates to those found here, however they suggest that their \nhigher prevalence of moderate/severe pain may be due to having a wide age range (13 -25), and/or \nthe use of online recruitment, which may have attracted those with more severe pain. Neither \nscenario was true for the current research, and so the prevalence of severe dysmenorrhoea in this \nsample is critically high. Evidence suggests that severity of dysmenorrhea  is unlikely to reduce \nsignificantly over time (Weissman et al., 2004) , and a cons iderable number of w omen with severe \ndysmenorrhea may develop CPP symptoms in future (Hardi et al., 2014).  \n \n10.2.4 Behaviours Related to Menstruation \nMost (63.9%) participants reported to have used medication for period pain, a similar rate to \ncomparable research (66%: Parker et al., 2010) , but higher than in a recent meta -analysis (48%: \nArmour et al., 2019a) . As found elsewhere (Armour et al., 2021a) , most participants managed their \nperiod pain with OTC medications rather than seeking a prescription, and the most commonly taken \nOTC medications were paracetamol (72.2%), and NSAIDs (57.2%). Clinical trials have indicated that \nparacetamol is less effective at treating period pain than NSAIDs (Marjoribanks et al., 2015) , and \ntherefore the higher rate of paracetamol use in this sample may be noteworthy, as they may not be \ngetting optimal pain relief. Most of those taking medication did report moderate (53.6%) to high \n\n \n199 \n \n(35.1%) effectiveness, however, there did appear to still be some disturbance to a ctivities, as many \ngirls (22.7%) reported school absence due to periods, the most common reason being period pain \n(90.6%). Previous research has indicated that adolescents/young women often take a sub-therapeutic \ndose of OTC medication, which might account  for some of the continued impact on school or life \nparticipation (Armour et al., 2021a). In addition, analgesics are sometimes perceived by girls and their \ncaregivers as being habit -forming, and therefore, their use for dysmenorrhea relief may not be \nfavoured (Agarwal and Venkat, 2009) . In the current sample, although the majority of those who \nreported severe pain took analgesics (87.5%), a minority still did not, and while the reasons for non -\nuse were not addressed in the  survey, the potential of medication hesitance cannot be ruled out. It \nmay therefore be necessary for MHE to include pain management strategies for dysmenorrhea, and \nto dispel the myths surrounding habit -formation (Agarwal and Venkat, 2009; Armour et al., 2021a; \nWong, 2011). Furthermore, if education about analgesics can help relieve the pain for some of those \nwho report moderate or mild effectiveness, it may be mo re evident which girls have pain symptoms \nthat warrant further medical/speciality investigation (Parker, 2006). \nAs noted above, almost a quarter (22.7%) of participants missed school due to their periods, the main \nreason being due to pain (90.6%). This aligns with previous evidence by Parker (2006), in which 26% \nof the sample missed school, 94% of whom stated per iod pain, and Agarwal and Venkat (2009), who \nfound 24% reported missing school due to dysmenorrhea. Therefore, pain appears to be a significant \nfactor in school absence related to periods. Severe period pain was associated with increased school \nabsence due to periods, as found elsewhere (Agarwal and Venkat, 2009; Armour et al., 2020a; Parker \net al., 2010; Pitangui et al., 2013). \nOther causes of school absence related to periods were nausea (37%), 'blood flow too heavy' (25%), \nand sickness (21%), which again is strikingly similar to those of Parker (2006), who found nausea was \nreported as the reason by 37% of their sample, 'blood flow too heavy' by 24.6%, and vomiting by \n13.8%. Finally, some participants indicated their reason for missing school due to periods was ‘other’ \nand described several physical symptoms such as dizziness, migraines, and tiredness.  \nIn recent years, there has been an acknowledgement of the issue of ‘period poverty’ amongst \nadolescents, that is, the inability to afford menstrual products (Plan International UK, 2018) . Data \ncollected in the UK suggests that 7% of girls regularly miss school because of their inability to afford \nsanitary products (Procter & Gamble, 2018). This was not reported by participants in the current study; \nhowever, the questionnaire largely focused on physical symptoms, and as such they may have \nassumed those were the aspect of menstruation that was of interest, and not reported it under ‘other’. \n\n \n200 \n \nFurthermore, the stigma associated with the inability to afford menstrual products (Briggs, 2021) may \nhave meant girls were hesitant to report it. \nSchool absence due to menstruation is an important issue both in the UK and globally. As girls \nmenstruate approximately once a month, it could mean absences occurring regularly throughout the \nschool year. As absenteeism increases, negative educational impacts can occur (Gottfried, 2010) . \nRegular school absenteeism may interfere with academic performance, and thus can negatively \ninfluence a student’s future (Agarwal and Venkat, 2009). In this study, those who missed school due \nto their period mainly reported missing 1 day (56%), or 2 days maximum (4%). While  this might not \nappear excessive, there is evidence it can disrupt girls’ education, as even just a couple of missed \nlessons routinely can cause girls to fall behind (Briggs, 2021) . Furthermore, study results do not \naddress the issue of ‘presenteeism’ (lost productivity when present at school), which Armour et al. \n(2020a) noted as a more prevalent issue in their sample. They found that although 36% of those at \nschool had missed a whole day of school during menses, many more had reported tr ouble \nconcentrating in class (77%), or not to have performed as well on tests (58%) because of menstruation. \nPresenteeism is not visible, and therefore is not as easily tracked and quantified as absenteeism \n(Armour et al., 2020a), and as such, the impact of menstruation on schooling and education may be  \nmore complex than the findings in this research suggest. Non -academic activities such as sports \nparticipation and physical activities can also be affected by menstruation (Armour et al., 2020a), and \nthus, observed school absences may only be the tip of the iceberg. \nAlmost a third of the sample had visited a doctor about their period (29.5%). This is a rate similar to \nadolescents in Australia (33%: Parker et al., 2010), but higher compared to research with adolescents \nin Brazil (13%: Pitangui et al., 2013) and Malaysia (14.8%: Wong, 2011). Previous research has found \nthat despite a high prevalence of problematic menstruation, such as dysmenorrhea and disruption to \nlife activities, few adolescents seek medical help for their symptoms (Armour et al., 2021a; Pitangui et \nal., 2013; Wong, 2011) . In the current research, there is some evidence that girls who experienced \nissues indicating possible problematic menstruation had seen a doctor about their period. Those with \nsevere period pain, those who had missed school due to periods, and those who did not perceive their \nperiods to be ‘typical’, were all more likely to have seen a GP about their periods. This is encouraging \nand may suggest that some girls did recognise that their period could be problematic and sought \nmedical help for it.  \nHowever, while these associations were statistically significant, they do not highlight that there were \nmany girls with potential problematic menstruation who did not seek medical help. Examinations of \nthe cross-tabular results show that just as many girls  who report to miss school due to their periods \n\n \n201 \n \nhave not seen a doctor (n=50), as those who miss school and have seen a doctor (n=50). In addition, \na higher percentage of those with severe pain have not seen a GP (64.1%) than those who have \n(35.9%). Therefore, this demonstrates that many girls who have potential problematic menstruation, \nfor example severe pain, or missing school due to periods, do not seek medical help for their periods. \nThere may be several reasons why adolescents do not seek medical help  for problematic periods. \nFirstly, they  may initially attempt to self -manage their symptoms with OTC medications  (Li et al., \n2020). Secondly, adolescents are taught to expect some level of pain surrounding menstruation, and \nthus, when they experience it, they may believe it is ‘normal’, and not seek medical help (Armour et \nal., 2021a; Markovic et al., 2008; Wong, 2011). Armour et al. (2021a) found that although 92% of their \nsample of 13–25-year-olds experienced moderate or greater levels of period pain, with significant \ndisruption to activities (including school absence), more than half of them still thought their period \nwas ‘normal’.  Those with more severe pain were less likely to consider them ‘normal’, however it did \nnot translate into help seeking behaviours  (ibid). Thus, even when ‘abnormality’ may be recognised, \nit is not always acted upon. This may be in part due to widely held beliefs that menstrual symptoms \nof pain are an integral part of female life, and should therefore be endured, even if they are severe \n(Armour et al., 2021a; Markovic et al., 2008; Wong, 2011) . In addition, adolescents may be \nembarrassed to disclose menstrual concerns to a doctor (Ackard and Neumark-Sztainer, 2001). Seear \n(2009a) found this hesitance to discuss menstruation, even with healthcare professionals, is part of \nthe practice of upholding ‘menstrual etiquettes’ (Laws, 1991) , to avoid the stigma (actual or \nanticipated) that might occur following disclosure.  \nAnother potential factor in hesitance to help-seeking may be that when adolescents do seek help, \ntheir pain is often normalised (Li et al., 2020) , which may deter or disillusion them  for pursuing it \nfurther (Armour et al., 2021a) . Dysmenorrhea is the most common gynaecological complaint in \nadolescence (De Sanctis et al., 2016), and doctors have stated they may prefer to treat such complaints \nwith caution initially, perhaps with medication, so as not to trigger anxiety (Dixon et al., 2021) . \nHowever, adolescent girls may view such encounters differently, feeling their health issues are not \ntaken seriously, and instead just being given a ‘quick fix’ option such as medication (Gupta et al., 2018).  \nThis study captured novel data on the outcomes of adolescents’ doctor’s appointments for \nmenstruation, and their opinion of their care. Half (50%) of those who reported seeing a doctor were \ngiven medication, 39.2% were told to return if the problem persisted, and 8.5% were told it was \nfine/normal. Most girls (72.1%) felt reassured by their visit, but over a quarter (27.9%) did not. The \nmain reason reported for this was that their symptoms were not resolved. The other primary reasons \nwere a lack of information or explanation given  by the health professional, feeling their symptoms \n\n \n202 \n \nwere dismissed or normalised, finding medication ineffective, and that no treatment was offered. This \nsuggests that some girls may have felt disillusioned following the doctor’s visit (i.e. not believing the \nhealthcare professionals can help), or that they had had their symptoms normalised. Implications of \nthis may be a reduced likelihood of returning to see a GP if symptoms persist (Igler et al., 2017). \nFurther medical investigation  (specialist referral or other investigation) occurred very rarely in this \nsample, in 12.3% of those who had visited a doctor about periods, or only 3.6% of the entire sample. \nThis finding was also highlighted by Parker et al. (2010) in their adolescent sample, of whom 33% had \nseen a doctor regarding menstruation and only 9% (of the entire sample) had been referred to a \nspecialist for further investigation. Furthermore, less than 1% of their sample had received a clinical \ndiagnosis (i.e. endometriosis or PCOS). Given their large sample size (1051 girls), it would be expected \nfor more than 1% of them to have a clinical diagnosis (ibid), particularly since the prevalence of PCOS \nin adolescence is between 3.4% and 11% (Naz et al., 2019)  and the prevalence of endometriosis in \nadolescents with severe dysmenorrhea is 12.3% (Ragab et al., 2015)  to 18.6% (Knox et al., 2019) . \nParticipants in the current study were not specifically asked to report clinical diagnoses, but in view of \nthese figures, it would be expected that more of them reported further medical investigation.  \nAccording to recent guidelines by the National Institute for Health and Care Excellence (NICE, 2017), \nindividuals who report high pain levels and ineffective pain relief from medication may exhibit atypical \nperiods, and a  clinical referral for specialist opinion should be considered . The low rate of medical \ninvestigation in these adolescent samples may reflect a reluctance of health professionals to refer or \noperate on adolescents due to their age (Dixon et al., 2021), and perhaps a lack of acknowledgement \nthat serious pathology can occur in this age group (Parker et al., 2010). Doctors may also attempt to \ntreat adolescents in primary care, for example with hormonal contraceptives, before referring them \nonto secondary care, particularly if they are under organisational pressure to keep such referrals to a \nminimum (Dixon et al., 2021) . The high proportion of those given medication in the current study \nsupports this. In addition, adolescents seeking help from physicians may experience difficult y in  \nproviding their menstrual history, because they do not have a long frame of reference against which \nto assess their symptoms (Slap, 2003). Therefore, if adolescents do seek help for menstrual symptoms, \nthese encounters may not always result in anticipated or effectual outcomes. \n \n10.2.5 Summary \nIn this section, the menstrual experience of a UK sample of adolescents has been discussed in relation \nto key literature within the field. Findings largely corroborate those of such literature, reaffirming the \nwide variation in timing of menarche, the high  incidence of dysmenorrhea in adolescents, and the \n\n \n203 \n \nimpact of period pain on school attendance. This study has contributed to existing literature, providing \nimportant data on an understudied UK population. In doing so it has identified that a critical number \nof girls report experiencing severe period pain. The study also provides novel data on the outcomes \nof seeking medical help for periods during adolescence, which contributes to both the field of \nmenstruation research, and that pertaining to endometriosis. \n \n10.3 Perceived Typicality of Periods \nIn the previous section there was discussion regarding how adolescent girls’ perceptions of the \n‘normality’ of their menstrual symptoms might influence their help seeking behaviours. One of the \nmajor aims of this study wa s to explore which aspects of menstruation girls might consider to be \n‘normal’, or ‘typical’. Therefore, their menstrual characteristics were analysed alongside their \nperceptions of the typicality 4 of their period. Many girls (63.1%) believed that their p eriods were \ntypical for someone their age. This rate is slightly higher than in an Australian study of 13-25 year-old \nyoung women (51%: Armour et al., 2021a), and lower than in another Australian study of 14-19 year-\nold girls (78%: Parker et al., 2010). In the current study, one in 10 girls (10.1%) believed their periods \nwere not typical, which corresponds to 10% o f the girls in the Parker et al. (2010)  study who stated \nthey were sure there was something wrong with their period. Finally, over a quarter of girls (26.7%) \nin the present study were ‘unsure’ if their periods were typical, which may reflect a lack of \nunderstanding of what is ‘typical’. I ndividuals reporting non-typical periods were significantly more \nlikely to report irregular periods, severe period pain, taking medication for period pain, finding \nmedication inadequate for pain, taking OCPs, and seeing a doctor about their periods.  \nThere is a dearth of previous quantitative research examining adolescents’ beliefs about the normality \nof their period within which to discuss this data, however Armour et al. (2021a) also found that the \nyoung women they surveyed (aged 13-25) were significantly more likely to believe that their periods \nwere ‘abnormal’ as their pain became more severe. In the multinomial logistic regression model, pain \nseverity was a significant predictor of typicality beliefs (p < 0.05). Compared to those who perceived \ntheir periods as typical, an increase in pain severity was associated with an increase in the likelihood \nof being ‘unsure’ if one’s period was typical. In their qualitative research into how young women (aged \n18-22 years) conceptualise the normality/abnormality of their menstrual cycles,  Wood et al. (2007) \nfound that they described being given scant information about what level of menstrual pain is \nconsidered to be ‘typical’, and therefore had to make judgements based on their own criteria of what \n \n4 As outlined in Section 8.6 of the methods chapter, the word ‘typical’ was used in the survey because of the \npotential implications of the word ‘normal’ (the concern and anxiety of them feeling ‘abnormal’). \n\n \n204 \n \nconstitutes ‘extreme pain’. Even if they believed their pain to be extreme compared to others, they \nmay still have viewed this pain as ‘normal’ for them, if it was all they had ever known. The subjectivity \nof pain may therefore be a factor in the association between pain severity and being unsure if one’s \nperiods are typical as observed here. In addition, social sanctions on discussing menstruation with \nothers may mean that girls do not discuss their menstrual discomfort with others (Seear, 2009a), and \nso may be unable to gauge if their level of pain is ‘typical’. Thus, the literature suggests that there may \nbe many contributing factor s as to why those who consider their pain to be severe are unable to \nidentify if this is typical or not.  \nRegularity of cycles was also a significant predictor in the multinomial logistic regression model (p < \n0.05).  Closer examination of the model revealed that in comparison to those that believed their \nperiods were typical for someone their age, participants who reported irregular cycles were 6.1 times \nmore likely than those with regular cycles to believe that their periods were non-typical. In addition, \nparticipants with irregular cycles were 2.8 times more likely than those with regular cycles to say they \nwere ‘unsure’ if their periods were typical.  There is a high prevalence of irregular menstrual cycles \nduring the adolescent years, which can las t for a few years until a more regular pattern begins to \ndevelop (ACOG Committee on Adolescent Health Care, 2015; Slap, 2003). However, the association in \nthis research, between having irregular cycles and believing periods are non-typical, may be indicative \nof a lack of awareness among adolescent girls about how common irregular cycles can be at this age. \nMHE can put too much focus on the ‘textbook’ idea of a 28 -day regular cycle , and research has \nindicated that if girls’ periods do not adhere to these notions, they may begin to question if the re is \nsomething wrong (Donmall, 2013; Wigmore-Sykes et al., 2021). Cycle length variability, particularly if \nunpredictable, has been described by young women to make them question if their periods are \natypical (Wood et al., 2007). \nThe multinomial logistic regression model also showed that in comparison to those who believed their \nperiods were typical, participants who had visited a doctor for their periods were 4.7 times more likely \nthan those who had not visited a doctor to believe that their periods were non -typical for someone \ntheir age (p < 0.05). It is not possible to infer the direction of causality behind this association, and one \ncan only speculate. It may be that those who believed their periods were non -typical had therefore \nseen a doctor about them. Armour et al. (2021a) found that 31.3% of their participants had consulted \na doctor about the normality of their periods, and believed them to be a trustworthy source of \ninformation. Alternatively, it may be that those who had seen a doctor about their periods b elieved \nthem to be non-typical following the consultation. For instance, half of those who had visited a doctor \nabout their periods were given some form of medication, which may have served to legitimize their \nconcerns about their period. \n\n \n205 \n \nThis research has identified several menstrual characteristics that were associated with girls’ beliefs \nabout the typicality of their period. As mentioned, there is little other research to compare these \nresults with, but there is some evidence of associations between typicality perceptions and both pain \nseverity (Armour et al., 2021a) and cycle regularity (Wood et al., 2007). Although no association was \nmade in the current study, Wood et al. (2007)  also noted that menstrual bleeding duration was a \nsalient feature in young women’s perceptions of normality. This characteristic, a long with length of \nmenstrual cycle, were the menstrual characteristics that the young women primarily discussed when \nassessing the typicality of their period. Wood et al. (2007)  believe this is likely because the ‘typical’ \nmenstrual cycle length (28 days) and bleeding duration (4 -6 days) are the aspects of menstrual \ninformation that are most frequently provided in written materials and the media and are therefore \neasy to make judgements upon.  \nWhen judging the normality/abnormality of their menstrual cycles, participants in the Wood et al. \n(2007) study used three broad criteria; if their cycles conformed to what they had learned is normal; \nif their cycles were predictable based on previous experience s, and; if their cycles were problematic \nor extreme. The first and third of these criteria relate to learned norms, yet this is troubling given that \ngirls receive very limited information about menstrual experience (ibid). Girls have described their \neducation to be overly focused on the biological aspects of menstruation, and use of menstrual \nproducts, with little information given on the actual embodied experience of menstruation (Betty for \nSchools, 2017; Marván and Bejarano, 2005; Plan International UK, 2018).  This has also been confirmed \nin research with UK teache rs about their perspectives on the provision of MHE (Brown et al., 2022). \nAdolescents therefore  receive little informa tion on the range of physical symptoms that may be \nexpected, and thus considered to be within the ‘normal’ range.  \nThere are some important implications  of girls not being able to recognise what is ‘typical’ and \n‘atypical’. Without an understanding of what  can be expected, girls might worry unduly  over \nsomething that actually is relatively ‘typical’ (Donmall, 2013; Wigmore-Sykes et al., 2021).  Conversely, \nthey may not recognise if they are experiencing ‘atypical’ symptoms, and as such may not seek help \nwhen they need to (Bodén et al., 2013; Moradi et al., 2014) . Without an understanding  of what is \n‘typical’, girls may inadvertently allow their menstruation to cause significant disruption to their lives. \nArmour et al. (2021a)  found that despite a significant negative impact on their academic and \nextracurricular lives, most of their sample (young women aged 13-25 years) believed their period was \n‘normal’. Furthermore, Houston et al. (2005) found that most of the girls in their study (aged 12 -21) \nbelieved it was normal to miss school or other activities due to dysmenorrhea. Therefore, believing \ntheir periods to be ‘typical’, girls perhaps do not seek help when they should, which could have \nconsequences for their health and/or educational outcomes. \n\n \n206 \n \nFurther complicating the matter, even if they experience pain that they do believe to be ‘abnormal’ in \ncomparison to others’, they may still consider the pain to be ‘normal’ for them, particularly if it is all \nthey have ever known (Wood et al., 2007) . Pain or other bothersome symptoms may become \nnormalised over time (Armour et al., 2021a) . Indeed, research with women with endometriosis has \nsuggested that even if pain is extreme and disruptive, they often just assumed they were ‘unlucky’ to \nhave such severe pain (Ballard et al., 2006; Denny, 2004b; Moradi et al., 2014). This was also evidenced \nin Study 1 of this thesis. Wood et al. (2007) found that only if period symptoms were extreme, or were \nunpredictable and inconsistent, did young women perceive them to be ‘abnormal’.  \n \n10.3.1 Summary \nThe findings of this section, along with those from previous evidence, imply that adolescents’ \njudgement around what characteristics of menstruation are typical or not is complex. Pain is \nsubjective and therefore even those who think pain is severe are uns ure if their periods are typical. \nDespite being a common occurrence in adolescence, irregular periods were associated with being non-\ntypical. Therefore, improved MHE which adequately covers the range of possible menstrual \nexperiences, including those which  are ‘atypical’, is needed. Although symptoms such as pain are \nsubjective, MHE could make efforts to contextualise that pain, using examples such as ‘pain that is \nresistant to painkillers’, or ‘pain that causes you to miss school’, because these ideas are not abstract, \nand thus easier to distinguish. Information on when to consider seeing a doctor would also be useful \n(Armour et al., 2021b). \n \n10.4 Attitudes and Communication about Menstruation \nPrevious research with adolescent girls has indicated that their attitudes towards menstruation are \noverwhelmingly negative (Brooks-Gunn and Ruble, 1982; Burrows and Johnson, 2005; Donmall, 2013; \nMarván and Molina-Abolnik, 2012; Plan International UK, 2018). In the current research, a minority of \ngirls stated that periods are ‘positive’ (8.1%), over a third rated them ‘negative’ (37.6%), and the rest \nstated they ‘don’t mind’ (54.3%). While this implies a range of views in this sample, the results of the \nMAQ/AMAQ attitude items suggest a tendency for more negative attitudes. In general, there was \nmore agreement with attitude items that had a negative stance, such as ‘Menstruation is something I \njust have to put up with’, whereas those with a positive stance, such as ‘Menstruation is something to \nbe happy about’, were more commonly approached with disagreement. In a recent systematic review, \nmenstruation was found to commonly invoke a negative emotional response, despite being regarded \n\n \n207 \n \nas part of ‘becoming a woman’ (Barrington et al., 2021) . In the current study, while more negative \nopinions were commonplace, 63.2% of the sample did show some agreement with the item \n‘menstruation is a sign of womanhood’.   \nPrevious research has revea led that a prevailing theme amongst adolescent girls is a of fear about \n‘leaking’, or the inability to conceal their menstruating status (Briggs, 2021; Burrows and Johnson, \n2005; Donmall, 2013; Jackson, 2019; Lee, 2008; Newton, 2016; Plan International UK, 2018) . In this \nstudy, the majority of girls (57.7%) reported agreement with the item ‘When I have my period, I am \nworried that I’ll have an accident’ , but more than might be expected, given the reoccurrence of this \nissue in previous research, showed disagreement (28.3%). Finally, there was a high level of agreement \n(82.2%) amongst participants with the item ‘Menstruation is something I just have to put up with’, \nperhaps indicating that they find it ‘bothersome’ (Brooks-Gunn and Ruble, 1980). Research suggests \nthat young people in the UK commonly use words such as “annoying” and “inconvenient” when \ndiscussing menstruation (Plan International UK, 2018). In this sample of adolescents, there is evidence \nthat negative attitudes towards menstruation are ongoing, and  their views align with previous \nresearch regarding menstrual attitudes.  \nThe negativity surrounding menstruation is thought to be a reflection of British “menstrual etiquettes” \n(Laws, 1991) and societal notions of secrecy, stigma and taboo towards menstruation  (Costos et al., \n2002; Johnston-Robledo and Chrisler, 2013). These taboos refer to the idea that menstruation should \nbe kept hidden, and not talked about, particularly with men. In the current study, most girls reported \nfeeling ‘comfortable’ or ‘very comfortable’ discussing periods with their female friends (86.1%) and \nfemale relatives (77.9%), but much less so with their male friends (24.1%) and particularly their male \nrelatives (8.9%). Thus, there may be some evidence of them upholding the ‘menstrual etiquette’ in \nterms of discussing menstruation with men.  \nGirls in this sample did not appear to uphold communication taboos with their female friends. Other \nresearch has cited the importance of female peers for discussing, sharing, and learning about periods \nwith (Plan International UK, 2018) , and in particular they can provide information pertaining to the \n‘reality’ of periods (Kissling, 1996; Newton, 2016). However, some research has indicated that when \ngirls do discuss menstruation with each other, t hey are often ‘commiserating’ or receiving support \nfrom one another about th e negative aspects of it (Cooper and Koch, 2007; Jackson and Falmagne, \n2013), which may inadvertently sustain the negativity, stigma, and taboos associated with \nmenstruation. \nIn addition to feeling comfortable discussing menstruation with female relatives, many girls reported \nthat they  first learned about menstruation from their mothers (43 .2%) or another female relat ive \n\n \n208 \n \n(22.7%), and they were a key source if further information was sought (34.8% and 17.3% respectively). \nIn comparison, 24.7% of girls reported school as their first information source. This suggests that many \ngirls receive ‘informal’ education about menstruation from their mothers/female relatives before they \nreceive their ‘formal’ education. Mothers are often seen as a key source of information about periods \n(Plan International UK, 2018; Wigmore -Sykes et al., 2021) . They are often a source of emotional \nsupport at menarche (Lee, 2008), and can empathise with some of the symptoms girls experience . \nHowever, they can sometimes unwittingly encourage notions of silence and concealment, and may \nalso pass on myths and taboos (Beausang and Razor, 2000; Cos tos et al., 2002) . Even if mothers do \nprovide positive messages, they may take daughters aside to have ‘the talk’, away from other family \nmembers, which  may reinforce that it is something to be kept a secret (Kissling, 1996) . A recent \nEngland based study  highlighted the potential for parents to transmit stigma, as the y made very \nnegative comments about an online video made by a group of girls at a school which addressed the \nembarrassment about menstruation: “If you look at the video the girls did and look at the comments \n[…] there were some lovely comments! (with sarcasm). There was: “Oh, is nothing sacred?”; “Why are \nwe talking about this?” and “This is disgusting!” And this from women!” (Vice Principle: Briggs, 2021). \nAlthough almost a quarter of participants first heard a bout periods at school, a very small minority \nreported that they would seek further information about periods at school (2.7%), and as discussed \nfurther below, only a quarter (27%) were comfortable in discussing endometriosis with teachers. This \nambivalence towards discussing menstruation with teachers has been highlighted elsewhere; only \n20% of teens in a UK sample felt comfortable discussing their period with teachers (Plan International \nUK, 2018), and only 20.7% of young women in an Australian s ample reported to trust their teachers \nas a source of information about periods (Armour et al., 2021a) . This discomfort goes both ways; \nBrown et al. (2022) surveyed teachers about the delivery of MHE in schools in the UK, less than half of \nwhom (47%) felt comfortable teaching MHE, and almost a quarter of whom (23%) were not \ncomfortable. It is worth noting the possibility of bias in this sample of teachers, as it could be the case \nthat only those who were comfortable/confident, or had an interest in the menstrual cycle \nparticipated in the survey, and thus teachers may be  less comfortable delivering MHE than these \nresults imply (Brown et al., 2022). A large majority of teachers (80%) reported that they would benefit \nfrom additional training in the provision of MHE (ibid). \nIn the current study, the internet was highlighted by  almost a third of girls as a source for additional \ninformation about periods (30.5%), second only to mothers (34.8%). In a series of focus groups, girls \nhave described the internet as a platform for talking openly about menstruation, providing peer \nsupport, and validating each other’s experiences (Plan International UK, 2018) . The anonymity thus \nallows them to talk about ‘taboo’ subjects’ (ibid). In an Australian study (Armour et al., 2021a), almost \n\n \n209 \n \nhalf of young women surveyed (49.8%) used the internet to determine if their periods were ‘normal’, \nand as such it was the most popular source (36.3% discussed with their mother and 31.1% with their \ndoctor). While the internet is a readily available and valuable resource, there is little way to vet the \nresources, and so teens might be subject to a lot of misinformation (Plan International UK, 2018). In \naddition, young people might be subject to derogatory comments or portrayals of periods online and \non social media, which reinforce negative stereotypes (Plan International UK, 2018; Thornton, 2013; \nTomlinson, 2021).  \n \n10.4.1 Summary \nA minority of girls (8.1%) believed that periods were ‘positive’, and there was evidence of negative \nattitudes, stigma, and the upholding of communication taboos regarding menstruation among this \nsample. Most girls identified a female family member as their first source of information about \nperiods, however literature suggests they may (sometimes unwittingly) convey stigma towards \nmenstruation. Formal school based MHE has the potential to deliver e ducation in a non-stigmatised \nway, however evidence suggest that adolescents find MHE at school to be awkward, and girls in this \nstudy showed a preference for the internet (30.5%) over lessons at school (2.7%) for learning more \nabout menstruation. \n \n10.5 Awareness of Endometriosis \nOne of the major aims of this research study was to explore the awareness of endometriosis amongst \na UK sample of adolescent girls. In this sample, 10.1% stated they knew what endometriosis was, and \n8.2% were able to provide an accurate description. These figures are considerably lower than previous \nresearch conducted abroad, with awareness approximately half that found in Italian girls aged 14-20 \n(18.8%: Zannoni et al., 2014), and a third of that in Australian girls aged 14-19 (23.6%: Parker, 2006). \nFurthermore, the awareness of endometriosis in this study was significantly lower  in comparison to \nmore recent research in Australia, which is likely to have been conducted at a similar time point to \nthis study, in which more than half of those girls attending school (52.8%) had heard of endometriosis \n(Armour et al., 2021a).   \nThe much lower rate in the current study may reflect a lower awareness in the UK compared to in \nother countries, demonstrating the critical need for improved awareness and education around \nendometriosis in the UK. Improving individuals’ awareness of endometriosis may help improve time \nto diagnosi s, and given that many with endometriosis first begin to experience symptoms during \n\n \n210 \n \nadolescence (Greene et al., 2009; Manderson et al., 2008) , then targeting educational interventions \nat this age is crucial. The average delay from symptom onset to diagnosis in the UK is 8 years (Ghai et \nal., 2020), a figure which has remained constant over the last 3 decades (Hadfield et al., 1996) . Yet, \ndiagnostic times appear to be decreasing elsewhere; in the USA the average delay in 1998 was 9 years \n(Greene et al., 2009), a figure which has halved in mor e recent research to 4.4 years (Soliman et al., \n2017). Similar trends are also being seen in Australia, where specifically those whose symptoms have \nstarted more recently, have presented for medical help sooner (Armour et al., 2020b). This may reflect \nan increased awareness of the symptoms of endometriosis , and the encouragement to seek help, \nfollowing the efforts of advocacy organizations in Australia (Armour et al., 2020b) . Despite similar \nefforts by Endometriosis UK, these trends are yet to be observed in the UK. \nIn addition to possible awareness rate differences between countries, the lower awareness in this \nresearch may in part be  due to the way in which it was measured. The studie s with which we have \nbeen comparing, measured awareness at a more surface level, asking their participants if they had \never ‘heard of’ endometriosis, without further embellishment. This measure does not  necessarily \nequate to  having any knowle dge or understanding of endometriosis. The current  study purposely \naimed to assess awareness in more depth, to identify not only the rate of awareness of endometriosis \namongst adolescents, but what  they actually know about it. Thus, the s urvey asked “Do you know \nwhat endometriosis is?”, followed by a request to describe it in their own words. This revealed that \n10.1% (44/437) stated ‘yes’, they knew what it was, but only 8.8% (36/438) could provide a description \nwhich accurately captured s ome aspect of it. Using this more rigorous method, it is evident that \nawareness may be a lot lower than has previously been identified. \nShadbolt et al. (2013)  used a similar method to ascertain awareness and communication needs of \nendometriosis in a sample of young women aged 16 -25 in Australia. They fou nd that 52% of their \nsample had heard of endometriosis prior to survey completion, although among those aged 16 -18 it \nwas only 33%. This is higher than in the present study, however they recruited participants online and \nused an online survey, so it may re flect a motivation bias to complete a  survey about endometriosis \nby those who had already heard of it (endometriosis was mentioned in the recruitment advert). When \nasked to provide descriptions of endometriosis, most of their sample were unable to provide an \naccurate description, although they did not classify descriptions according to their accuracy. Similar to \nfindings in this research, descriptions in the Shadbolt et al. (2013) study (including the inaccurate ones) \nwere mostly based on symptoms of endometriosis (11%), biological mechanisms of endometriosis \n(52%), or a combination of the two (37%). However, in the current study, symptoms were the most \nsalient aspect of endometriosis described by the sample (14/46 responses, 30%), followed equally by \nbiological mechanisms and a combination of both (each 11/46, or 24%). Both studies found pain to be \n\n \n211 \n \nthe most frequently described symptom of endometriosis. It is worth noting that through personal \ncommunication with the authors of the Shadbolt et al study, copies o f the study information sheet \nwere obtained, and in such, participants were given information about endometriosis. Therefore, it is \ndifficult to ascertain what their knowledge and understanding of endometriosis would have been \nwithout the description they received prior to survey completion. \nRegardless of the reason, the rate of awareness observed in this study is very low. In fact, less \nadolescents have awareness of endometriosis (8.8%) than may experience it in their lifetime \n(assuming the prevalence is approximately 10% of women of reproductive age: Eskenazi and Warner, \n1997). Furthermore, this is particularly interesting when compared to adolescent awareness of other \nhealth conditions. As identified by Austin et al. (2002) , adolescents in the  general population have \nshown comparatively high familiarity with asthma (88%), arthritis (84%), diabetes (81%), HIV/AIDS \n(78%), and breast cancer (72%);  and approximately one-third are familiar with Parkinson’s disease \n(39%) and epilepsy (31%). Girls are considerably less aware of endometriosis than other chronic \nconditions which have similar adult prevalence rates, such as diabetes and epilepsy. \nWhile most participants did not know about endometriosis (91.8%), a small number (8.2%) showed \nsome awareness. Further analysis revealed that those that knew about endometriosis were more \nlikely (than those that did not know) to use medication for period pain, to have ever used the OCP, \nand to have visited a doctor about their periods. In addition, compared to tho se who did not know, \nthey had significantly lower age at menarche, and significantly higher severity of period pain scores. \nThese findings are interesting, particularly given that endometriosis itself is associated with severe \nmenstrual pain, lower age at menarche (Nnoaham et al., 2012 ), and use of OCPs to treat painful \nmenses in adolescence (Chapron et al., 2011a) . This therefore begs the question of whether having \nknowledge of endometriosis might reflect having experienced some aspect of problematic \nmenstruation. The participants may therefore have investigated endometriosis themselves or heard \nabout it from a doctor. However, only 2 of those who stated knowing what endometriosis was had \nheard about it from a doctor (4.7%), therefore suggesting the latter is unlikely.  \nThe girls in this study identified the internet or other media as their most common source of \ninformation about endometriosis (21/43). This is in contr ast to findings from Shadbolt et al. (2013) , \nwho found that girls identified friends, doctors, and then parents most often. In both studies, school \nwas identified as an information source at similarly low rates, of 18.6% (current study) and 13% \n(Shadbolt et al., 2013) . The finding of the media/internet as the key source of information about \nendometriosis in the current study is not unexpected. Almost all teenagers (98%) have access to the \ninternet (ONS, 2018) and are social media users (96%: ONS, 2017). Over the past few years, several \n\n \n212 \n \nhigh-profile celebrities have publicly talked about their experiences with the condition, often using \nsocial media, upon which they have millions of followers, as their outlet. For example, Lena Dunham \nused Facebook to reveal to her fans that she has endometriosis, and has documented her journey on \nsuch platforms (Moore, 2016). She openly discussed her hysterectomy due to endometriosis in 2018. \nWhether a consequence or coincidence, the search term “What is endometriosis?” was the third \nhighest trending health related search on Google in 2018 (Welch, 2018). There are more than 400,000 \nGoogle searches on endometriosis per month in the United States alone (Hirsch et al., 2017) . \nFurthermore, teenagers are increasingly using the internet to seek health information, they trust the \ninformation, and even modify their behaviour accordingly (Ettel III et al., 20 12). However, the issue \nwith the internet as an information source is the lack of high-quality, accurate, and credible \ninformation available on there (Hirsch et al., 2017). That which does meet such criteria is often difficult \nfor a lay audience, and therefore maybe teenager s, to understand. Therefore, platforms other than \nthe internet, may be a more appropriate source for adolescents to learn about endometriosis. \nSchool may be such a platform. This research showed that most girls did want to know more about \nendometriosis (85.1%), and school lessons were the preferred mode of learning about the condition \n(41%). However, girls reported to be less comfortable speaking with their teachers (27%) than with \nschool nurses (37%), doctors (44%), friends (56%) or parent s (64%) about endometriosis. Similar \ntendencies were identified by Shadbolt et al. (2013), who found that teachers were the least preferred \nperson with which to discuss endometriosis. Adolescents often report  preferring outside experts \n(specialists, youth workers, sexual health professionals, etc.) to deliver this content (Pound et al., \n2016; Shadbolt et al., 2013) . Such an approach has been used in New Zealand, where a menstrual \nhealth and endometriosis educational program has been delivered in secondary schools by trained \neducators working for Endometriosis New Zealand (Bush et al., 2017). The program is delivered to girls \nand boys, and aims to help girls identify symptoms that stray from the norm, as well as to increase the \nawareness of endometriosis, and reduce stigmas and ta boos about menstruation. Since its \nimplementation in 1998, awareness of endometriosis among students in targeted regions has \nincreased from less than 10%, to between 32-41% in 2015 (Bush et al., 2017). Furthermore, data from \none region which has  consistently delivered the program, show s an increase in the proportion of \nyounger patients attending for specialised endometriosis care.  \nAn educational program such as that used in New Zealand (Bush et al., 2017), which delivers education \nabout endometriosis, and also targets the stigmas and taboos associated with menstruation, is \nwarranted in the UK. As discussed in the previous section, there is some evidence that the girls in this \nstudy do display negative attitudes towards periods. These attitudes themselves may affect how girls \napproach their MHE, as wanting to learn more about endometriosis was associated with a positive \n\n \n213 \n \nattitude towards periods, and more agreement with the statement ‘Menstruation is something to be \nhappy about’. If attitudes are associated with educational engagement, then there is a need to address \nnegative attitudes t o ensure that girls do not miss out on the education that could help them to \nidentify any problematic symptoms they might experience. In addition, preferences for learning more \nabout endometriosis were associated with school type: all of the girls at the female-only school stated \nthey wanted to learn more about endometriosis, compared with 80% of those at the mixed boarding \nschool. Research has indicated that girls worry about being shamed at school about their periods, \nparticularly by boys (Newton, 2016). The majority of girls in the study did feel that boys should learn \nabout endometriosis (85.1%), and inclusion of boys in general MHE could reduce period -related \nbullying (Bodyform, 2018; Plan International UK, 2018) . Therefore, striking a  balance between \nensuring girls’ comfort, whilst also providing adequate MHE to both boys and girls, is necessary. \n \n10.5.1 Summary \nEndometriosis researchers  (Cox et al., 2003c; Manderson et al., 2008; Markovic et al., 2008)  and \ncharitable organisations have argued for some time that there is little awareness of endometriosis, \nand the results of this study have confirmed thi s, as only 8.2% of participants had some (even basic) \nlevel of awareness . There was a significant association between wanting to learn more about \nendometriosis and severity of period pain, however, as most girls wanted to learn more (85 .1%), it \nsuggests that regardless of their symptoms, girls want to know about things that can and do affect \nthem or their peers/families. Improving adolescents’ awareness may enable them to identify \nsymptoms suggestive of endometriosis and seek help sooner. This is an imperat ive part of reducing \nthe long diagnostic delays associated with endometriosis.  \n \n10.6 Strengths and Limitations \nThis study ha s several strengths and limitations. One strength was the  large and ethnically diverse \nsample; nearly half (49.1%) of participants identified as Asian, 35.8% as White, 10.7% as Black, and \n4.4% as Mixed Race. Such diversity is important, given that menstrual experiences of ethnic minority \npopulations living withi n countries in the Global North have been previously underrepresented in \nsimilar research, which tend to be of majority White ethnicity  (Armour et al., 2020a; Armour et al., \n2021a; Parker, 2006; Parker et al., 2010; Shadbolt et al., 201 3; Zannoni et al., 2014) . However, the \nresearch intended to study the UK population, and this ethnically diverse sample might be more \n\n \n214 \n \nrepresentative of a more local (Birmingham) population, rather than being representative of \nadolescents within the UK as a whole.  \nThe s tudy survey was modelled on those from similar research  (Parker, 2006; Par ker et al., 2010; \nShadbolt et al., 2013; Zannoni et al., 2014) , which therefore enabled direct comparisons, and meant \nmany of the questions had already been piloted with the intended demographic (Bryman, 2016). \nHowever, a limitation was an absence of validated questionnaires to draw upon. Despite the pilot \nstudy indicating that the survey was fit for the purpose, some main survey respondents confused the \nlength of their period with the length of their menstrual cycle ( which resulted in 37 respondents \nreporting menstrual cycle  lengths between 2 and 7 days).  However, this issue also arose in similar \nresearch (Parker, 2006; Parker et al., 2010), and may further support the argument that adolescents \nneed better education about menstruation, as perhaps they are unaware of the differenc e between \nthese two terminologies. It must also be acknowledged that taking individual items from scales (i.e. \nthe A-MAQ and MAQ) could adversely affect the reliability of the scale. In this survey, the aim was to \nprovide a brief indication of attitudes as opposed to a full representation of a construct, however this \nmust still be considered as a limitation. \nWhen asked to describe endometriosis in their own words,  23 respondents linked endometriosis to \npain in their descriptions, which they may have deduced from earlier survey questions, which focused \non their period pain experiences. However, as only 5% of the total number of participants surveyed \nresponded to this question with an answer including pain, it does not appear to have overly influenced \nthe results on endometriosis awareness. Furthermore, if it was to have had an influence, it would \nsuggest that awareness is actually worse than indicated in these findings. It is also worth considering \nthat a higher number of girls may have reported wanting to learn more about endometriosis because \nit was introduced to them in this survey, thus increasing the salience of this item . However, t he \nproportion of those wanting to learn more (85.1%) is comparable to that of similar research (89%: \nShadbolt et al., 2013). \nThe overall participant response rate was somewhat low (53%), however, as recruitment (information \nprovision and data collection) was often facilitated by school staff/teachers, it is not possible to \ncalculate a true response rate. One of the response rate barriers was the use of active parental consent \nby one of the schools, whose response rate was markedly lower (27.9%) than the two schools who \nused passive parental consent (47.8% and 71.3%). Previous research with adolescents has indicated \nthat passive parental consent can facilitate both a higher rate of participation and a more \nrepresentative sample (Spence et al., 2015). \n\n \n215 \n \nThe use of a pen and paper survey was  time consuming and entailed more work for the schools to \nfacilitate. Girls may have also been concerned about their anonymity using such a method. These \nfactors may potentially have impacted sample size . Those conducting similar research have used \nonline survey tools, resulting in much larger sample sizes (Armour et al., 2021a). This was considered \nin the design of the research, however it was felt that using the pen and paper method would produce \nmore robust data, particularly with reference to girls’ understanding  of endometriosis. As this was a \nkey aim of the research, this was deemed a worthwhile sacrifice. It enabled a more genuine measure \nof the level of awareness of endometriosis amongst adolescent girls. \nThe survey did not include questions regarding girls’ e xperience of heavy menstrual bleeding, a \ncommon adolescent concern (Friberg et al., 2006; Revel -Vilk et al., 2012)  and possible symptom of \nunderlying pathology . Heavy menstrual bleeding (HMB) was only asked about in relation to school \nabsence, but was not assessed any further. However, 5 participants reported taking tranexamic acid \nwhen asked about medications for period pains, a treatment specifically for heavy periods. This would \ntherefore warrant investigation in future research.  \nThe survey only asked about the frequency of OCP use but did not ask about the use of any other \nmenstrual management or contraceptive medic ations (e .g., intrauterine devices, contraceptive \ninjections, etc). The frequency of OCP use was low in this sample (13.7%)  compared to previous UK \nresearch (Rashed et al., 2015), which suggested that 19% of girls have received a prescription for OCPs. \nIt is possible that OCP use could have influenced cycle length, perceived cycle regularity, and pain \nlevels; however, as described above, the percentage of the sample using OCPs was low.  \nPainful periods were reported by the majority of girls, and the occurrence of ‘severe’ period pain was \nparticularly high (31.3%). There is the possibility of bias within this sample, in that those with \nparticularly problematic periods were more motivated t o participate. However, given the lack of \nresearch on dysmenorrhea and other menstrual symptoms conducted in the UK, it is difficult to \nestablish if the pain severity of this sample differs from that of the general population. More research \nis needed in this area. \n \n10.7 Conclusion  \nTo knowledge, this is the first UK research to characterise typical menstrual experience among \nadolescent girls, as well as their perceptions of typical menstruation and knowledge of endometriosis. \nIt has highlighted that most adolesc ent girls experience moderate to severe menstrual period pain; \nmany miss school due to their periods; many do not know whether their periods are regular or typical, \n\n \n216 \n \nand an overwhelming majority have no knowledge of the common chronic condition endometriosi s. \nThis latter finding is of critical importance, as it provides clear evidence of what adult women with \nendometriosis have been stating for years, that there is little awareness of endometriosis (Cox et al., \n2003c; Manderson et al., 2008; Markovic et al., 2008) . Findings demonstrate the critical need for \nbetter MHE provision to improve girls’ knowledge of typical menstruati on and pain management \noptions, and the inclusion of content on endometriosis and other menstrual health conditions. Such \nprovision is key to improving girls’ menstrual health literacy, experiences, and outcomes.  The \nimplications of this research, and recommendations for future research, are discussed in Chapter 11. \n  \n\n \n217 \n \nThesis Part 4: Recommendations and Conclusion \n \n \n \n\n \n218 \n \nChapter 11. Recommendations and Conclusion \n \n11.1 Introduction \nThis thesis took a pragmatic approach to the study of endometriosis in adolescents. A thorough review \nof past research highlighted areas for further exploration, and as such, the research questions were \ndevised. Adopting a feminist lens ensured that the research questions were centred on the lives o f \nwomen and had the potential to advocate for social change. These research questions stemmed from \nthe same evidence base, and therefore were interrelated, but they addressed slightly different \npopulations, and were therefore best approached by conducting two separate studies. Study 1 was a \nqualitative study exploring the experiences of endometriosis in adolescents. Study 2 was a \nquantitative study, identifying the menstrual characteristics and awareness of endometriosis among \nadolescents attending secondary school. The discussion chapters for each study (chapters 7 and 10) \naddressed the research questions, discussing research findings at length, and in the context of \nprevious literature.  This final chapter draws together the results from Study 1 and Study 2 to \nsummarise the implications of the thesis. This includes the implications for practice and the \nrecommendations for future research. In the conclusion, I demonstrate the contribution to the \nliterature, and the benefits of conducting these two studies for the research field.  \n \n11.2 Summary of Key Findings  \nStudy 1 showed that the symptoms of endometriosis in adolescence  are wide -ranging, and  \nsignificantly interfere with many aspects of life, including school, work, sport, social life, and \nrelationships. Adolescents face a long delay in obtaining a diagnosis, which is contributed to by a \nwidespread lack of awareness of endometriosis and frequent dismissals by health professionals. One \nof the most crucial findings of Study 1 was how adolescents’ experiences are significantly shaped by \ntheir age and life -stage. Drawing on Bury’s (1982) concept of ‘biographical disruption’, this study \ndemonstrates how endometriosis not only impacts many of the key aspects of adolescent life, but also \nthreatens their self -concept as a teenager/young adult, and their life -trajectories, and thu s, the \nconcept of ‘biographical threat’ was introduced. Adolescents’ suppor t and information needs \nregarding endometriosis are often unmet because they are not tailored to this life-stage. \nThe findings of Study 2 highlighted that most adolescent girls experience moderate to severe \nmenstrual period pain; many miss school due to their periods (most often due to pain); and many do \nnot know whether their periods are regular or typical. There was also evidence of stigma and taboos \n\n \n219 \n \nsurrounding menstruation among surveyed girls, and particularly towards discussing menstruation \nwith males  and teachers. Finally, an overwhelming majority (92%) had no knowledge of \nendometriosis, and most (85%) would like to learn about it given the opportunity. \n \n11.3 Implications for Policy and Practice \nThese study findings lead to two overarching recommendations; 1) an increased effort to provide de-\nstigmatised MHE to all, and 2) to provide an age -based approach to endometriosis healthcare and \nsupport. In the sections that follow, recommendations are made and evidenced using study findings, \nand additional literature where required.  \n \n11.3.1 Key Recommendation: An Increased Effort to Provide De-stigmatised Menstrual \nHealth Education to all Adolescents  \nA key finding of this thesis, evidenced in both Study 1 and Study 2, is the need for better menstrual \nhealth education (MHE) for adolescents in UK. In Study 1, many adolescents described their school \nbased MHE negatively, stating that it was overly focusse d on the practical and biological aspects of \nmenstruation, with little information on the actual experience of periods. These findings are \nconsistent with other UK based research with adolescents (Betty for Schools, 2017; Plan International \nUK, 2018), and with teachers, who reported on the provision of MHE in their schools (Brown et al., \n2022). Without this kind of information, participants in Study 1 discussed being unable to recognise \nthat their symptoms were problematic; they  learned to expect some pain and discomfort, and thus  \nthey believed that the pain they were experiencing was ‘normal’. They relayed that they would have \nliked more information about what is considered ‘normal’ or ‘abnormal’, and how much period pain \nshould hurt or interfere with life. There is further support  for these qualitative findings within the \nquantitative findings. For example, in Study 2, although most girls (68.7%) experienced ‘moderate’ or \n‘severe’ period pain, many (63.1%) thought their periods were ‘typical’. Furthermore, over a quarter \n(26.7%) were ‘unsure’ if their periods were typical, which may reflect a lack of understanding of what \nis considered ‘typical’. Therefore, as well as an understanding of the biological aspects of \nmenstruation, girls need MHE that includes the actual lived and bodily experience of having a period, \nand what might be considered within a typical range. \nAn implication of the lack of knowledge about menstruation is that girls are not always aware of how \nto manage their symptoms. In Study 1, adolescents with endometriosis s tated that their beliefs that \nsymptoms were just ‘normal menstruation’ contributed to their delays in obtaining medical help. In \n\n \n220 \n \nStudy 2, there was evidence that many girls with potential problematic menstruation (i.e., reported \nsevere pain or missing scho ol due to periods) did not seek help for their periods either. Thus, these \nfindings suggest that without an understanding of what aspects of menstruation are considered \n‘normal’, adolescent girls are not aware of when they should seek help for their sympto ms.  \nFurthermore, previous research has indicated that adolescents often take a subtherapeutic dose of \nOTC medication to manage dysmenorrhea, or take less effective medications (Armour et al., 2019a; \nO'Connell et al., 2006). There was some support for this in the current study, as girls more commonly \nused paracetamol rather than NSAIDs, therefore strengthening these researchers’ recommendations \non the need for MHE to include dysmenorrhea management. Painful periods appear to be a significant \nproblem in this age group; they affect school attendance and possibly school performance. It is \ntherefore important to provide relevant education to adolescents about the effective treatments that \nare available for dysmenorrhea, and when to seek further help if these fail. \nAs evidenced in both studies, adolescent girls are largely unaware of endometriosis. The adolescents \nin Study 1 described their lack of education about endometriosis; none of them had heard about it at \nschool. Most participants only learned about it by doing their own research online, and some first \nheard of it during a consultation in secondary care, or even at diagnosis, supporting findings in other \nresearch with adolescents with endometriosis (Bodén et al., 2013; Moradi et al., 2014) . Qualitative \nstudy participants stated that had they known about endometriosis, they would have got help sooner, \nand that when help was sought, they would have pushed for more to be done. Adding further weight \nto these findings, in Study 2, only 8.2% of participants had some (even basic) level of awareness about \nendometriosis. Participants in Study 1 all discussed the need for endometriosis to be taught about at \nschool, which, given their experiences with the condition, is unsurprising. However, 85.1% of those in \nStudy 2 stated they wanted to learn more about it as well. This indicates that most girls want to know \nabout the things that can and do affect them or their peers/families, even if they may not personally \nbe affected. This research has therefore demonstrated the critical need for MHE provision to improve \ngirls’ understanding of common gynaecological conditions, such as endometriosis and PCOS. \nImproving adolescents’ awareness may enable them to identify symptoms suggestive of \nendometriosis and seek help sooner. This is an imperative part of reducing the long diagnostic delays \nassociated with endometriosis. Increased awareness among adolescent girls may also enable those \naffected to receive more support from peers and teachers, which those in Study 1 felt was lacking.  \nThis research has provided further evidence of the ongoing stigma, taboos, and negative atti tudes \ntowards menstruation in England. In Study 1, participants spoke of their embarrassment in discussing \nmenstruation with others. This stigma may have contributed to diagnostic delays; they did not confide \nabout their symptoms to others, and therefore m issed the opportunity to compare menstrual \n\n \n221 \n \nexperiences, and to identify a problem. In Study 2, many girls stated they thought periods were \nnegative (37.6%) or expressed ambivalence about them (54.3%). Most girls had concerns about \n‘leaking’ and were uncomf ortable discussing menstruation with males. Although not investigated \nhere, menstrual stigma such as this can negatively impact girls’ education and health. Many girls worry \nabout going to school when on their period; they fear boys knowing, and about getting teased by them \n(Bodyform, 2018). Girls report being unable to concentrate in cl ass due to a fear of leaking and may \nalso miss out on sports participation  (Plan International UK, 2018) . Some girls are hesitant or \nembarrassed to discuss menstruation even with doctors, and consequently may not receive treatment \nfor period pain and/or menstrual related conditions (Burrows and Johnson, 2005).  \n‘Formal’ MHE, such as that provided at school, has the opportunity to deliver the key information girls \nneed about menstruation, without conveying the stigma and taboo. The timing of education is critical; \nStudy 2 identified a wide age range for menarche ( <9 years to >16 years), and therefore MHE needs \nto start in senior primary school and continue on an ongoing basis throughout secondary school. It \nneeds to be delivered to boys and girls, using a mixture of mixed and single sex group sessions, to \nensure th at boys are informed, and that girls have a safe space to discuss their concerns (Plan \nInternational UK, 2018) . However, girls often display discomfort talking to their teachers about \nmenstruation. For example, in Study 2, while the most popular source of education for endometriosis \nwas at school, teachers were the least popular person with whom the sample would like to discuss \nendometriosis. Therefore, outside experts maybe best placed to deliver MHE (Pound et al., 2016) . \nUsing information sources that adolescents prefer to access, such as the internet, may also facilitate \ntheir learning (Shadbolt et al., 2013) . Preliminary findings of a web -based intervention  used in \nAustralia suggest that such a tool can help improve health literacy, and assist young women to identify \nwhen they need to seek medical advice (Armour et al., 2021b) . Such a tool may be best used in \nconjunction with school based MHE, to ensure that education is received by all, and not only those \nwilling to engage in an online intervention. \nIt should be noted that since this research was conducted, provision was made for MHE to become \nmandatory in primary and secondary schools in England from September 2020 (Department for \nEducation, 2020b) . In this guidance, it outlines that education should be provided to all pupils, \nregardless of gender, and that pupils should know about menstrual wellbeing, and key facts about the \nmenstrual cycle. In secondary school, guidance states that pupils should be taught about menstrual \nconditions, including endometriosis, and to be able to understand what is meant by ‘normal’, how to \nrecognise problems, and when to seek help (Department for Education, 2020a) . There has been no \nformal evaluation yet on whether these changes to MHE provision have improved the menstrual \nhealth literacy of adolescents. \n\n \n222 \n \n11.3.2 Key Recommendation: An Age-based Approach to Endometriosis Healthcare and \nSupport                         \nThese recommendations are based on the evidence from Study 1, relating to adolescents’ experiences \nof endometriosis. Adolescence is a distinct stage within the life cycle, and adolescents’ experiences of \nendometriosis reflect this. The results of this study indicate that their priorities and concerns about \nsymptoms appear to differ to adults. Certain symptoms, such as pain, heavy bleeding, bowel issues, \nand painful tampon use, appear to be particularly disruptive during this life-stage. However, research \nwith adult women has highlighted infertility as a key complaint (Culley et al., 2013; Hudson et al., 2016; \nJones et al., 2004c). Differing symptom priorities may mean that adolescents’ treatment priorities also \ndiffer, and suggests that they would benefit from an age-based approach to their endometriosis \nhealthcare.  \nSuch an approach could also facilitate the detection of symptoms that are more specific to this age \ngroup. For example, participants in this study reported pain with tampon use, which may be \nparticularly relevant in a younger demographic, because although this pain is associated with \ndyspareunia (Landry and Bergeron, 2009), tampon use is likely to precede the onset of sexual activity \nand may be present in those who are not yet sexually active. This may therefore be something medical \nprofessionals could enquire about when assessing younger females presenting with other symptoms \nsuggestive of endometriosis. Although unlikely to be a symptom that is constrained to adolescents, a \nrecognition of the symptom in this age group may indicate medical professionals’ awaren ess of the \nparticular issues relating to adolescents, which may also facilitate the doctor -patient relationship \n(Grinyer, 2007). \nAs part of an age -based approach to care, adolescents with endometriosis would also benefit from \nmore age -specific informatio n and support, which participants in this study felt was lacking. \nInformation needs to be targeted towards issues that are relevant to adolescents in their life -stage, \nand presented in a manner that is cognisant with their level of development. Their biogr aphies and \nlife-trajectories are significantly disrupted at a crucial moment, which can have a lasting impact on \ntheir lives, and an effect on their emotional well-being. An awareness of these age-specific issues from \nhealthcare professionals may mitigate this effect (Grinyer, 2007). Adolescents may also benefit from \nsupport services specifically tailored for their age group. While support from others with \nendometriosis is valuable, the support needs of adolescents are very different to those of adults with \nendometriosis, and participants in this study stated they would value supportive connections to those \nwith endometriosis, but of a similar age. \n\n \n223 \n \nAs consistently reported in previous endometriosis research, adolescents in this study experienced a \nsignificant delay in obtaining a diagnosis, which was lengthier at the ‘medical level’. This research was \nconducted around the same time that the NICE guidelines were updated to acknowledge the \noccurrence of endometriosis in this age group (National Institute for Health and Care Excellence, \n2017), and as such might not reflect any changes to care brought on as a result of this update. \nHowever, recent evidence obtained from doctors suggests that they may prefer to be cautious when \ntreating younger women, so as not to trigger anxiety (Dixon et al., 2021) . Researchers have also \nsuggested there may be a higher threshold for performing laparoscopies in adolescents due to their \ninvasive nature (Dunselman et al., 2014; Saridogan, 2017). However, as illustrated in this research, not \nhaving a diagnosis itself causes issues, including an inability to explain absences to others, an impact \non mental health, and an inability to access appropriate support. Therefore, adolescents may benefit \nfrom being included in open discussion s about their options, so that they can make an informed \ndecision about having diagnostic surgery, rather than assumptions being made on their behalf. They \nmay also benefit from having a working diagnosis of endometriosis, to enable support access, and to \nlegitimise school, work, or social absences (Ballard et al., 2006). \n \n11.4 Recommendations for Future Research \nThe narrative review in Chapter 3 of this thesis highlighted the dearth of research addressing \nadolescents’ experiences of endometriosis. Study 1 of this thesis has provided a valuable contribution \nto this field, but in order to strengthen the recommendations arising from this research, some areas \nrequire further exploration. Firstly, in addressing the limitations (see Section 7.6), it is imperative for \nfuture research to aim to include the experiences of those from a wider range of demographics, \nincluding those under the age of 18, those from racially and ethnically minoritized communities, and \nthose from the LGBTQIA+ (lesbian, ga y, bisexual, transgender, queer, intersex , and asexual) \ncommunity. The findings in this study may not have  captured any  unique challenges th ese \ncommunities might face. \nIt would also be beneficial for future research to further explore the support networks of adolescents \nwith endometriosis. All participants were recruited from support groups, of either a face -to-face or \nvirtual format. Participants spoke of turning to online support because they craved connections with \nthose who understood. This research therefore might not represent the views of girls who do have a \ngood support network.  It was clear from the findings in Study 1 how valuable the girls found the \nsupport from their mothers; they provided emotional support, accompanied them to medical \nappointments, and often played an advocative role for their daughters. All of those involved in the \n\n \n224 \n \nstudy had a mother, and their experience may have been very different if they did not. Therefore, \nfuture research would benefit from exploring the experience of those without a mother/mother figure \nin their lives.  \nThe majority of participants in this research said they believed they would benefit from support \ntargeted to their age group. Such a network was developed and evaluated in the USA some 25+ years \nago (Thomas et al., 1996), which all participants found helpful. It may therefore be beneficial to run a \nfeasibility trial of a teen endometriosis support network in the UK, which can also utilise and \ninvestigate the advances in communication platforms since that research was conducted.   \nTo add strength to the recommendations to improve MHE for adolescents outlined in Section 11.3.1 \nabove, it was necessary to draw on research conducted by charities and companies that sell menstrual \nproducts (Bodyform, 2018; Plan International UK, 2018) , as there is a lack of up -to-date UK based \nacademic research on adolescents’ menstrual expe riences and attitudes. While the findings from \nStudy 2 begin to bridge this gap in the literature, there are still several areas that would benefit from \nfurther research. In Study 2 there was evidence of a high prevalence of dysmenorrhea in the sample, \nwhich was reported as a key reason for school absence during periods. However, other areas of life \ninterference were not explored, such as the impact of periods on ‘presenteeism’, or on sport, and \nsocial events. These have been found to be impacted by menstruation in adolescents/young women \nin research conducted elsewhere, but there is no current research on these factors in a UK sample. In \naddition, there was much focus on period pain, with little exploration of other aspects of problematic \nperiods such as heavy menstrual bleeding. Given the associations of this symptom with endometriosis, \nit’s prevalence and impact in a UK adolescent sample warrants further exploration.  \nThis research provides valuable insight into what menstrual characteristics were associated with girls’ \nbeliefs about the typicality of their period, however, to help direct future MHE provision, more \nresearch is needed in this area. There may be a more direct avenue of explori ng the concept of \ntypicality, perhaps asking adolescents which aspects of their period they consider to be \ntypical/atypical. Further research is also required into what boys understand about menstruation. To \nensure that MHE is meaningful for all, health literacy efforts need to include all genders, as well as \nparents/caregivers, who may be called on to inform and support adolescents about menstruation. \nAs outlined in section 11.3.1, provision has now been made for MHE to become mandatory in primary \nand secondary schools in England (Department for Education, 2020b) . Early data, collected in 2021, \nsuggests that MHE provision is still inconsistent across England, as almost a quarter of young people \n(24%) reported that they had not learned about m enstrual health at all, and 37% reported they had \nnot learned enough (Sex Education Forum, 2022). Teachers have also reported mixed reactions to the \n\n \n225 \n \ninformation and guidance they have been given on the new curriculum (Brown et al., 2022) . In \naddition, MHE was negatively impacted by the Covid-19 pandemic, which began in early 2020, when \nschools were forced to close, and much learning was remote (instead of face -to-face). A number of \norganisations that work with schools to provide MHE to pupils have expressed concern that MHE was \ndeprioritised during the pandemic, as teaching staff were facing pressure to ‘catch up’ on lost learning \ntime (Williams et al., 2022) . Further research is needed on t he impact of the Covid -19 pandemic on \nMHE provision, as well as the impact of the changes to MHE provision on the menstrual health literacy \nof adolescents.  \n \n11.5 Conclusion \nThis thesis has made important contributions to the knowledge pertaining to adolescent menstruation \nand endometriosis. As outlined in Chapter 4, there were several gaps in the literature, which this thesis \nhas begun to address. Firstly, there was a lack of up to date, UK based research on adolescents with \nendometriosis. Study 1 has addressed  this gap, and in doing so has shown the importance of \nconsidering life -stage on the experience of endometriosis. It has therefore contributed to the \nliterature on biographies and chronic illness, by illustrating the ‘biographical threat’ adolescents with \nendometriosis experience to their current and future biographies. In response to the call from \nWilliams (2000b) for more focus on context in biographical analyses, this research has also contributed \nto the literature on AWCI, showing the importance of considering gender and condition type.  \nImportantly, this study has also given a voice to adolescents with endometriosis, who until now have \nhad little opportunity to share the issues that are important to them. By giving this under-researched \ngroup a voice, the study has contributed to feminist theory (Hesse-Biber, 2010). \nThere was also a lack of UK based research on menstruation, and the prevalence of dysmenorrhea, \nwhich was addressed in Study 2. This study also addressed the research gap of adolescents’ awareness \nof endometriosis in the UK. Endometriosis researchers (Cox et al., 2003c; Manderson e t al., 2008; \nMarkovic et al., 2008) and charitable organisations (i.e. Endometriosis UK) have argued for some time \nthat there is little awareness of endometriosis, and that MHE provision needs to target this. The \nfindings in Study 2 have evidenced this lack of awareness and have also shown that most girls want \nthe opportunity to learn about it . The quantitative exploration of this issue also meant that a large \nnumber of female voices could be heard, which aligned with the feminist lens adopted (Miner-Rubino \nand Jayaratne, 2007). Quantifiable data such as this may enable policy makers and educators to utilise \ntheir expertise and funds towa rds addressing issues and making a change  for the lives of  girls \n(Leckenby and Hesse-Biber, 2007). \n\n \n226 \n \nCompleting the two studies alongside each other has been highly beneficial ; it  enabled a more \nthorough understanding to emerge than provided by the qualitative or quantitative findings alone. It \nallowed for some of the issues raised by adolescents with endometriosis to be contextualised to the \nwider population of adolescent girls. For example, in Study 1, participants almost unanimously stated \nthat they had never heard of endometriosis before, which was supported by the finding in Study 2, \nthat very few adolescent girls were aware of it. This evidence taken together provides strength to the \nargument for the need to educate adolescents about endometriosis. In a similar man ner, the \nqualitative study provided some significance to issues raised in the quantitative study. For example, \nin Study 2, many adolescent girls were unsure if their periods were ‘typical’, a nd large numbers of \nthose with potentially problematic symptoms did not seek medical help. Study 1 highlights the \nsignificance of these findings, showing how important it is that girls are aware of what ‘normal’ \nmenstruation looks like, and when to seek he lp. Without such knowledge, girls who do have \nunderlying pathology, such as endometriosis, may not obtain timely treatment for their debilitating \nsymptoms. Finally, Study 1 indicated that adolescents place much value in fitting in and feeling like a \nnormal teenager, and therefore, having the knowledge and confidence to answer the question “am I \n‘normal’?” is of great importance, not only for their health, but also their well-being. \n  \n\n \n227 \n \nReferences \n \nAapola, S., Gonick, M. and Harris, A. 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Date: ………………………. \nAuthors  \nTitle  \nYear  Country  \nJournal  \n  \n \nParticipants \nSample Size  Age Range (mean)  \nRecruitment \nmethod \n Other demographic \ninformation \n \n \n \nStudy Aims:  \n \nDesign ☐ Qualitative      ☐ Quantitative  ☐ Mixed methods \n \nQualitative Data collection:  \nAnalysis:  \nQuantitative Study type: ☐ Intervention  ☐ RCT \n☐ Observation \nMeasures  \n \nComparison ☐ Norms   ☐ None \n☐ Control group \n \n \nKey Findings \n \n \n \nThemes \n \n \n \n \nMethodological Limitations \n \n \n \n \n \n\n \n251 \n \nAppendix 2: Quality Appraisal of Included Studies \n  \n \nQualitative \nStudies \nAre there clear \nresearch questions? \n \nDo the collected data \nallow to address the \nresearch questions?  \nIs the qualitative \napproach \nappropriate to \nanswer the research \nquestion? \nAre the qualitative \ndata collection \nmethods adequate \nto address the \nresearch question? \nAre the findings \nadequately derived \nfrom the data? \nIs the interpretation \nof results sufficiently \nsubstantiated by \ndata?  \nIs there coherence \nbetween qualitative \ndata sources, \ncollection, analysis \nand interpretation? \nConboy et al. \n(2008) ✓ ✓ ✓ ✓ ✓ ✓ ✓ \nHighfield et al. \n(2006) ✓ ✓ ✓ ✓ ✓ ✓ ✓ \nMoradi et al. \n(2014) ✓ ✓ ✓ ✓ ✓ ✓ ✓ \nPlotkin (2004) \n ✓ ✓ ✓ ✓ ✓ ✓ ✓ \nRandomised \nControlled Trials \nAre there clear \nresearch questions? \n \nDo the collected data \nallow to address the \nresearch questions?  \nIs randomization \nappropriately \nperformed? \nAre the groups \ncomparable at \nbaseline? \nAre there complete \noutcome data? \nAre outcome \nassessors blinded to \nthe intervention \nprovided? \nDid the participants \nadhere to the \nassigned \nintervention? \nAhn et al. (2009) \n ✓ ✓ Can’t tell Can’t tell ✓ Can’t tell Can’t tell \nDiVasta et al. \n(2015)  ✓ ✓ ✓ ✓ x ✓ x \nGallagher et al. \n(2017) ✓ ✓ Can’t tell ✓ ✓ Can’t tell Can’t tell \nWayne et al. \n(2008)  ✓ ✓ Can’t tell ✓ ✓ ✓ ✓ \n \n \n \n \n \n\n \n252 \n \nAppendix 2 Quality Appraisal of Included Studies (continued) \nNon-Randomised \nStudies \nAre there clear \nresearch questions? \n \nDo the collected data \nallow to address the \nresearch questions?  \nAre the participants \nrepresentative of the \ntarget population? \nAre measurements \nappropriate \nregarding both the \noutcome and \nintervention (or \nexposure)? \nAre there complete \noutcome data? \nAre the confounders \naccounted for in the \ndesign and analysis? \nDuring the study \nperiod, is the \nintervention \nadministered (or \nexposure occurred) \nas intended? \nDiVasta et al. \n(2018)  ✓ ✓ Can’t tell ✓ ✓ Can’t tell ✓ \nEstes et al. (2021) ✓ ✓ ✓ ✓ ✓ ✓ ✓ \nGallagher et al. \n(2018) ✓ ✓ Can’t tell ✓ ✓ ✓ ✓ \nRoman (2010) \n ✓ ✓ ✓ ✓ ✓ Can’t tell ✓ \nRowlands et al. \n(2016)  ✓ ✓ ✓ ✓ x ✓ ✓ \nSchneider et al. \n(2020) ✓ ✓ Can’t tell ✓ Can’t tell ✓ ✓ \nQuantitative \nDescriptive \nStudies \nAre there clear \nresearch questions? \n \nDo the collected data \nallow to address the \nresearch questions?  \nIs the sampling \nstrategy relevant to \naddress the research \nquestion? \nIs the sample \nrepresentative of the \ntarget population? \nAre the \nmeasurements \nappropriate? \nIs the risk of \nnonresponse bias \nlow? \nIs the statistical \nanalysis appropriate \nto answer the \nresearch question? \nDun et al. (2015) \n  ✓ ✓ ✓ ✓ ✓ Can’t tell ✓ \nFong et al. (2017)  \n ✓ ✓ ✓ ✓ ✓ Can’t tell ✓ \nGonzález-\nEchevarría et al. \n(2019) \n✓ ✓ ✓ Can’t tell ✓ ✓ ✓ \nSmorgick et al. \n(2013) ✓ ✓ ✓ Can’t tell ✓ ✓ ✓ \n \n \n \n \n\n \n253 \n \nAppendix 2 Quality Appraisal of Included Studies (continued) \nMixed-Methods \nStudies \nAre there clear \nresearch questions? \n \nDo the collected data \nallow to address the \nresearch questions?  \nIs there an adequate \nrationale for using a \nmixed methods \ndesign to address the \nresearch question? \nAre the different \ncomponents of the \nstudy effectively \nintegrated to answer \nthe research \nquestion? \nAre the outputs of \nthe integration of \nqualitative and \nquantitative \ncomponents \nadequately \ninterpreted? \nAre divergences and \ninconsistencies \nbetween \nquantitative and \nqualitative results \nadequately \naddressed? \nDo the different \ncomponents of the \nstudy adhere to the \nquality criteria of \neach tradition of the \nmethods involved?  \nBodén et al. \n(2013) ✓ ✓ ✓ x x x x \nRush and Misajon \n(2018) ✓ ✓ x Can’t tell ✓ ✓ ✓ \nStaccone (2006) \n ✓ ✓ ✓ x x x x \n \n\n \n254 \n \nAppendix 3: Study 1 Recruitment Flyers \n \n \n \n  \n\n\n \n255 \n \nAppendix 4: Study 1 Telephone Screening Sheet  \n \n \n\n\n \n256 \n \nAppendix 5: Study 1 Interview Guide \n \nTEENDO Interview Guide \nExperiences of Teenagers with Endometriosis \n \nParticipant Initials: ________    ID Number:___________ \nDate: _____________________ \nTelephone Interview/Face-to-Face Interview (Location _____________________) \n \nPre Interview Checklist  \nReceived and read PIS  \nAsked/answered questions  \nSigned consent form  \nConsented to audio-record  \nUnder 16s:  \n     Parent/guardian received and read PIS  \n     Parent/guardian signed consent form  \n \n \nField notes (including details of where interviewed, who present, etc.) \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \nHow did the participant hear about the research? \n_________________________________________ \n \nTimeline offered?  Yes/No  Completed?  Yes/No \n\n \n257 \n \nDemographic Information \nDate of Birth: ________________  Age: __________ \n \nEthnicity: _____________________  Religion: ______________________ \n \nRelationship status: \n Married \n Living with partner \n Boyfriend/girlfriend \n Single \n Other \nChild Status: \n No children  \n Children   ____ (how many) \n Pregnant \nOccupation: ___________________________________  FT/PT (circle)  \n \nEducation level: \n No qualifications \n GCSE or equivalent \n A-Level or equivalent \n University degree \n Post-graduate Qualifications \n Other ___________________________ \nMember of Endometriosis UK? \n Yes   Member since: ___________  \nAttends face to face support groups?   Y/N  Online only   Y/N \n No \n No, other support group? _______________________ \n \nEndometriosis History \nAge of first symptoms: __________ \nAge at diagnosis: _____________ \nMedical treatment received: \n No treatment \n Medication  ___________________________________________________ \n Surgery If yes, how many surgeries? ______Exploratory/To remove endo (circle) \n\n \n258 \n \nFor the next part of the interview, we’ll be talking about your experiences of living with \nendometriosis. I’ll turn the recorder on for this bit (if consented). I have noted down a few things that \nI’d like to ask you about, but I am really interested to hear your story, so don’t worry if we go off \ntopic, as I want you to chat about what’s important to you. If there’s anything I think we haven’t \ncovered, or if I’d like a bit more information, I’ll let you know. Remember you don’t have to answer \nany questions you don’t want to, and if you would like a break at any time then just say. \nRECORDER ON \nInitial Illness experience \nUse of timeline as an elicitation tool. \n1. Tell me about when you first started experiencing endometriosis symptoms? \n• What were your symptoms? \n• What was [symptom/symptoms named by participant] like? How did you feel about \nit/them? \n• How did the symptom(s) interfere with your day-to-day life? \n• Who did you tell? Why? \n• Who didn’t you tell? Why not? \n• What did you think was happening?  \n \nExperience of care \n2.  When did you first see a doctor or medical professional about your symptoms? \n• What first led you to get help? \ni. Did you know where to go for help? Yes/No \nii. Where or to who did you go? Did you go alone or with someone else (if so \nwho)?  \niii. What happened? \niv. How did you feel about the care you received from the GP/health \nprofessional? \n• How long did it take to receive a referral?  \ni. Who were you referred to? \nii. What happened? \n• How did you feel about the care you received?  \n• Did you feel you were given enough information? \n• Were you able to understand what they were saying/the language \nthey used? \n \n \nExperience of medical/surgical treatment/diagnosis \n3. In the information you provided earlier you said you had tried [names of medical treatments \nfor your endo] \n…………………………...............  ………………………………………… \n …………………………………….. \n\n \n259 \n \n \n• Did they work? If yes, how long for? \n• Any side effects? If yes, how did these impact on your daily life? \n• How did you decide to use this/these treatments?   \n• Did you feel involved in the decisions? Did you want to be involved?  \n• What did you hope the treatment would do? (reduce pain, other symptoms, fertility, \netc.)   \n \n4. And you’ve also had ___ laparoscopies \n• Tell me about the experience  \n• Did it help to treat the pain/symptoms? \n• Were you given enough information? \n• How long did it take to recover from the surgery? \n• Did the pain come back at all afterwards? \n \n5. How did you feel when you were given your diagnosis? \n• How long did it take to get the diagnosis? \n \nImpact on daily life \n6. How does endo impact you now? On a day-to-day basis?  \n• What symptoms of endo do you usually experience now? Have they changed since \nyour Endo first started (as discussed above)? \n• Pain? Where? Can you describe what that pain is like, how often? \n• Bleeding? \n• Bladder/bowel issues? \n• Painful sex? (NORMALISE some people experience…) \n• Tampon use?   \n• Vomiting/nausea?  Fainting? Fatigue? \n \n• Do your symptoms interfere with your day to day life? How? \n• Do they stop you from doing anything? i.e. school, work, home, social \nactivities, sport  \n \n7. How does endometriosis impact your social life?  \n• Going out with friends? \n• Relationships with boyfriends/girlfriends? \n• Have you told your friends about it? Why/why not? \n \n8. How does endo impact your relationships with your family? \n• Mum? Dad? Siblings? \n• Have you told all your family about it? Why/why not? \n \n9. How do you deal/cope with your endo on a day to day basis? \n\n \n260 \n \n• Do you think your endo effects your mental health? If yes, how? \n• Do you think your endo effects your self-confidence or self-esteem? If yes, how? \n• Have you felt in control of your endometriosis? If yes – what has helped you feel \nthat way? \n \nSupport \n10. When you need support, who do you talk to about your endo? \n• Family members (Mum/Dad/siblings/aunts/nan etc.) \n• Friends? Boyfriends/girlfriends? \n• Endo support group? \n• Others? (Youth workers/school nurse) \n• How do they help you? \n \n11. Are there any support services that you feel are missing? If yes, what are they? \n• Are you able to find support targeted to people your age? Do you think it’s needed? \nWhy? \n• Do you know any others your age with endometriosis? \n \nInformation \n12. Where do you go for information about endo? \n• PROMPT: Internet? Which sites?  \n• PROMPT: Doctors/Gynaecologists/nurses, School Nurses, Parents? \n• Which have been the most useful? Why \n• Is the information relevant/helpful? Appropriate to your age? \n• Is there any information you feel is lacking? If so, what? \n \nUse of any alternative therapies/Diet/Exercise \n13. Have you used any alternative therapies to help you manage your endo? \n• What have you tried? \n• Did they work? \nFuture \n14. How do you see your future living with endo? \n• How do you think it will impact: \ni. School/work \nii. Social life/friendships \niii. Romantic relationships (sex, marriage etc.) \niv. Fertility (having children) – has someone talked to you about this? \n \n \n \n\n \n261 \n \nEducation \nAs part of this research we are also interested in what education teenagers receive about \nendometriosis and menstrual health.  \n \n15. If you can remember… Had you ever heard about endometriosis prior to your \ndiagnosis/symptom onset?  \n• If yes – where had you heard about it? Who from? \n• Any family history? \n• If no – do you think this had  any impact on your endo experience \n• i.e. seeing a doctor when your symptoms began \n \n16. Can you remember your menstrual health education at school?  \n• Did you feel it was well explained? Thorough?  \n• Do you remember being told about endo or similar conditions? \ni. If no – do you think it is something teens should learn about as part of M H \neducation? \n• If yes – who (i.e. Girls and boys)? \n \n \n \nConcluding Questions: \nIs there anything else we didn’t discuss that you would like to talk about?  \n \n \nDo you have any questions for me? \n \n \nRECORDER OFF \nThank participant – emphasize importance of research \nPost Interview Checklist  \nProvide Further Information sheet  \nEnsure you’ve answered any questions they have  \nAsk if they are happy to be contacted again  \n \nIs the participant happy to be contacted in the future/for any follow up work? YES NO \n\n \n262 \n \nAppendix 6: Study 1 Timeline Drawing Instructions \n \nTimeline drawing instructions \n \nTo start the interview off, I’d like to do a bit of a drawing exercise with you if you’re happy to do so?  \nFor this exercise it would be great if you could draw a visual representation of your journey with \nendo, like a timeline, or a river/path – something to show the key events in your journey so far.  \nIf you start off by thinking back to when your symptoms first began, and then draw your journey up \nuntil the present day, making sure you include any significant events that impacted on your journey \nalong the way. \nYou can decide which way round to put the paper, and use as many or as few colours as you like. \n \nPrompts: \nAge at menarche \nSymptom onset \nDiagnosis \nSurgeries \nSchool exams/Uni/College \nRelationships \n \nDon’t worry – your drawing skills are not under any scrutiny here! \n  \n\n \n263 \n \nAppendix 7: Study 1 Ethics Approval Letter \n \n  \n\n\n \n264 \n \nAppendix 8: Study 1 Participant Information Sheet \n \n\n\n \n265 \n \n  \n\n\n \n266 \n \nAppendix 9: Study 1 Parent Information Sheet \n \n\n\n \n267 \n \n \n \n\n\n \n268 \n \nAppendix 10: Study 1 Participant Consent Form \n \n \n \n \nFaculty of Health \nSeacole Building \nWestbourne Road \nBirmingham \nB15 3TN \n \nParticipant Consent Form \nVersion 1.0 \nDated: 15/03/2017 \n \nTitle of Study: Teens’ and Young Women’s Experiences of Endometriosis \n \nREC Ref: Randhawa /Apr /2017 /RHRB /0813 \n \nName of Researchers: Amie Randhawa and Dr Annalise Weckesser \n \n1. I confirm that I have read and understood the Participant Information Sheet Version Number \n1.0 dated 15/03/2017 for the above study and have had the opportunity to ask questions. \n \n2. I understand that my participation is voluntary and that I am free to withdraw at any time, \nwithout giving any reason. \n \n3. I understand that relevant sections of my data collected in the study may be looked at by \nthe research group and regulatory authorities where it is relevant to my taking part in this \nstudy. I give permission for these individuals to have access to these records and to collect, \nstore, analyse and publish information obtained from my participation in  this study. I \nunderstand that my personal details will be kept confidential. \n \n4. I understand that anonymous direct quotes from the information I provide during the \ninterview may be used in the study reports, presentations and publications. \n \n5. I give permission for the interview to be audio-recorded. \n \n6. I understand that information about me recorded during the study will be kept in a secure \ndatabase.  If the data is transferred it will be made anonymous.  Data will be kept for 7 years \nafter the study has ended.  \n \n7. I agree to take part in the above study. \n \n \n……………………………………………….  ………………………  …………………………………………….. \nName of Participant   Date   Signature \n \n……………………………………………….  ………………………  …………………………………………….. \nName of Researcher   Date   Signature \nPlease initial boxes \n\n \n269 \n \nAppendix 11: Study 1 Parent Consent Form \n \n \n \nFaculty of Health \nSeacole Building \nWestbourne Road \nBirmingham \nB15 3TN \n \nParent/Guardian Consent Form \nVersion 1.0 \nDated: 15/03/2017 \n \nTitle of Study: Teens’ and Young Women’s Experiences of Endometriosis \n \nREC Ref: Randhawa /Apr /2017 /RHRB /0813 \nName of Researchers: Amie Randhawa and Dr Annalise Weckesser \n \n1. I confir m that I have read and understoo d the information sheet for parents/guardians \nversion number 1.0 dated 15/03/2017 for the above study and have had the opportunity to \nask questions. \n \n2. I understand that my daughter’s participation is voluntary and that she is free to withdraw \nat any time, without giving any reason. \n \n3. I understand that  relevant sections of my daughter’s data collected in the study may be \nlooked at by the research group and regulatory authorities where it is relevant to her taking \npart in this study. I give permission for these individuals to have access to these records and \nto collect, store, analyse and publish information obtained from my daughter’s participation \nin this study. I understand that her personal details will be kept confidential. \n \n4. I understand that anonymous direct quotes from the information my daughter provides \nduring the interview may be used in the study reports, presentations and publications. \n \n5. I give permission for my daughter’s interview to be audio-recorded. \n \n6. I understand that information about my daughter that is  recorded during the study will be \nkept in a secure database.  If the data is transferred it will be made anonymous.  Data will be \nkept for 7 years after the study has ended.  \n \n7. I agree for my daughter to take part in the above study. \n \n……………………………………………….  ………………………  …………………………………………….. \nName of Parent   Date   Signature \n \n……………………………………………….  ………………………  …………………………………………….. \nName of Researcher   Date   Signature \n \nName of daughter: ……………………………………………………. \nPlease initial boxes \n\n \n270 \n \nAppendix 12: Study 1 Participant Further Information Sheet \n \n\n\n \n271 \n \nAppendix 13: Study 1 Approval to Recruit Through Endometriosis UK \n \n \n  \n\n\n \n272 \n \nAppendix 14: Study 2 Information for Potential Schools \n \n \n \nTeenage Girls’ Awareness & Attitudes towards Menstrual Health:  \nA Survey Study*  \n \n*Part of a doctoral study on teenage girls’ experiences & knowledge of menstrual health in general \nand endometriosis in particular  \n \nSchool Information Pack \n \nResearch Background & Aims \nIssues surrounding menstruation can greatly impact upon the health and quality of life of teenage \ngirls. There is, however, a lack of research addressing menstrual attitudes and awareness among \nteenagers in the UK.  By obtaining such information, through this survey, we may better understand \nthe health and educational needs of adolescents around menstruation.  \n \nResearchers suggest that there is a lack of awareness among teenage girls about what constitutes an \naverage, or ‘normal’, menstruation. Without such knowledge, those who experience menstrual \nhealth-related problems (such as endometriosis), often do not recognise that there is an issue. In \naddition, teens may ‘suffer in silence’, feeling too embarrassed to talk about their periods. A recent \nUK survey (link below) highlights these issues, with half of girls (aged 14-21) missing school due to \ntheir period, usually giving an alternate excuse, and many were embarrassed about talking about \nperiods.  \n \nThis survey study, which will capture teenage girls’ awareness of menstrual health, forms part of a \nlarger mixed methods doctoral study that aims to understand teenage girls’ experiences and \nawareness of menstrual health in general, and of endometriosis in particular.  It is hoped that \nfindings from this study will act as a guide for future health education priorities, aimed at increasing \nteenagers’ knowledge of menstrual health and ill health – especially in the form of endometriosis \n(see below for further information regarding this condition).  \n \nSchool Survey Research Methods \nThe survey will take approximately 5-10 minutes to complete. It comprises of a few demographic \nbackground questions and a number of short answer, closed and multiple choice questions. \n \nAll teenage girls (aged 15 - 19 years) attending local secondary schools, able to read and write in \nEnglish, are invited to participate. School pupils aged 15 and over will be given information sheets \nabout the study prior to the survey. Those interested in participating will then complete a consent \nform and study survey. Only participants aged 15 additionally require consent of a parent/guardian \n(this is not a requirement for those aged 16-19).  \n \nTEENDO Study \n\n \n273 \n \nThis research has full ethical approval from the University Ethics committee (HELS FAEC) at \nBirmingham City University. The researcher (Amie Randhawa) holds an Enhanced DBS Certificate \n(Dated 1st March 2017). \n \nAdditional Information  \nEndometriosis in Teenagers and Diagnostic Delays \nEndometriosis is a chronic condition in which endometrial-like tissue is found outside of the uterine \ncavity, often on the reproductive organs, bowel and bladder. These tissue deposits respond to \nmonthly hormone cycles, inducing a local inflammatory response, which leads to scarring and \nadhesion formation. Common symptoms include chronic pelvic pain, dysmenorrhoea, fatigue, heavy \nmenstrual bleeding and infertility.  \n \nIt is common for women/girls with endometriosis to experience emotional distress and reduced \nquality of life, and it can also impact on work, social life, school attendance and education. \nEndometriosis affects approximately 10% of women of reproductive age, the majority of whom \nreport that their symptoms begin during adolescence.  \n \nOne of the significant issues encountered by teenagers with endometriosis is a lengthy delay in \nobtaining a diagnosis, which can last for many years, during which time their symptoms may worsen. \nOne of the reasons often given for this delay is that teenagers wait a long time to seek help for their \nsymptoms, which could be due to a lack of awareness, of not only endometriosis, but also of what \nconstitutes a typical and healthy menstruation experience.  Thus, it is hoped that findings from this \nstudy will help inform future menstrual (ill) health education initiatives for teenage girls, leading \nto reduced diagnostic delays for those who may have endometriosis.  \n \nLink to recent UK survey on menstruation: https://plan-uk.org/media-centre/almost-half-of-girls-\naged-14-21-are-embarrassed-by-their-periods \n \nFurther contact details \nIf you have any questions or require further details about the study then please do not hesitate to \ncontact me: \nAmie Randhawa \nPhD Candidate, Birmingham City University \n0121 331 6067 or 07760 106091 \nAmie.Randhawa@mail.bcu.ac.uk \n \nOr the Director of Studies for this doctoral study:  \nDr. Annalise Weckesser  \nSenior Research Fellow  \nCentre for Health and Social Care Research, Birmingham City University   \n0121 331 7154   \nAnnalise.Weckesser@bcu.ac.uk   \n \n\n \n274 \n \nAppendix 15: Study 2 Participant Information Sheet \n \n\n\n \n275 \n \n \n\n\n \n276 \n \nSchool Logo (if \nrequested) \nAppendix 16: Study 2 Parent Information Sheet and Consent Form - Opt Out \n \n \nParent Information Sheet \nVersion 3.0 \nDated: 17/07/2017 \nMenstrual health awareness and attitudes among teenagers \n \nName of Researcher: Amie Randhawa \n \nDear Parent/Guardian, \n \nWe would like to invite your daughter to take part in our research study. We will be attending [name \nof school] on the week commencing [date] to ask all girls between the ages of 15 and 19 to complete \na questionnaire for our research. Before you decide whether you are happy for her to take part, \nplease read the following information to understand why the research is being done and what it \nwould involve for your daughter. If you have any further questions or anything is unclear please do \nnot hesitate to contact us. \n \nWhat is the purpose of the study?  \nThe aim of this study is to explore menstrual patterns, attitudes and awareness among teenagers in \nthe UK. There is currently a lack of research which specifically addresses these issues within a UK \nsetting, and it is hoped that by obtaining information on teenagers’ awareness and attitudes, we \nmay better understand the health and educational needs of adolescents around these topics.  \n  \nWhy has my daughter been invited?  \nYour daughter is being invited to take part because she attends a local school that has agreed to be \ninvolved in the research. We are inviting many teenagers to take part from a number of schools in \nthe local area.  \n  \nDoes my daughter have to take part?  \nThe study is voluntary so it is up to your daughter to decide whether or not she wishes to take part.  \nIf she does wish to take part she will be required to give her consent by completing and signing the \nconsent form. As your daughter is under the age of 16, she will also require your consent to \nparticipate as well. If you are happy for her to take part then you do not need to do anything. \nHowever, if you would rather she does not participate then please complete and return the opt-out \nconsent form at the end of this letter by [date]. Please note that once consented into the study, your \ndaughter is still free to withdraw at any time and without giving a reason. \n \nWhat will taking part in the research involve?  \nThis research involves the completion of a short questionnaire, which will be done during school \nhours at an allocated time. The questionnaire will include some brief demographic questions, such \nas age and ethnicity, and then a short series of questions about usual periods and their attitudes \ntowards menstruation. The final part of the questionnaire involves questions about menstrual health \nawareness and education preferences. There are no questions about sexual activity. Participants can \nchoose to leave out any questions that they are not comfortable with completing. The survey will \ntake approximately 5-10 minutes to complete. \n \n\n \n277 \n \nIs the study anonymous? \nYes, all the information collected during the study is anonymous. We do not ask for any information \nthat could identify the participants and when we write up the results of the study they will be \nreported in a way that does not identify individual participants.  \n  \nWhat are the possible benefits of taking part?  \nAlthough there are no direct benefits for taking part, the information we get from those who \nparticipate in this study may help to enhance our understanding of the educational needs of \nteenagers about menstruation. Therefore each individual’s participation is highly valued.   \n \nWhat if there is a problem?  \nIf you have a concern about any aspect of this study, you should speak to the researchers who will \ndo their best to answer your questions.  The researchers’ contact details are given at the end of this \ninformation sheet. If your questions are not adequately answered then please contact the project’s \nSupervisor, Dr Angela Hewett (contact details also below).  \n \nWill taking part in the study be kept confidential?  \nWe will follow the ethical guidelines as set out by Birmingham City University and all information \nabout participants will be handled in confidence.  \n  \nIf your daughter joins the study, then the researcher, Amie Randhawa, will be the primary person \nwho will look at the data collected. The data may also be looked at by the supervisors of the PhD \nproject to check that the study is being carried out correctly. All will have a duty of confidentiality to \nyour daughter as a research participant and we will do our best to meet this duty.   \n  \nAll information which is collected during the course of the research will be kept strictly confidential, \nstored in a secure and locked office, and on a password protected database, accessible only to the \nprimary researcher, Amie Randhawa.  Any information about participants which leaves the \ninstitution will be anonymised and a unique code will be used so that participants cannot be \nrecognised from it.    \n  \nResearch data will be kept on an encrypted database for 7 years, which only the researcher, Amie \nRandhawa will have access to. After this time the data will be disposed of securely.   \n \nYour daughter’s school may be provided with a summary of the results of the research. Please be \nassured that this summary will not identify any individual participants or their responses. \n \nWhat will happen if my daughter doesn’t want to carry on with the study?   \nParticipation in this study is voluntary and your daughter is free to withdraw at any time, without \ngiving any reason. If she wishes to withdraw at any time during questionnaire completion, then she \ncan indicate this to the teacher or the researcher (who will also be present). If she wishes to \nwithdraw after completion of the questionnaire she can contact Amie Randhawa (contact details \nbelow) to inform her of her decision to withdraw. If she does decide to withdraw, all the information \nprovided by your daughter will be destroyed and not used further in the research. \n  \nWhat will happen to the results of the research study? \nThe results of the research will be written up as part of an educational qualification, a PhD thesis and \nmay also get published in academic journals and used in presentations about the study. Please be \nassured that your daughter will not be identified in any report or publication.   \n \n \n\n \n278 \n \nWho has reviewed the study?  \nAll research at Birmingham City University is reviewed by independent group of people, called a \nResearch Ethics Committee, to protect your interests. This study has been reviewed and given \nfavourable opinion by the Faculty of Health Research Ethics Committee.  \n \nFurther information and contact details  \nIf you have a concern about any aspect of this study, please do not hesitate to contact: \n \nAmie Randhawa, PhD Candidate \nRavensbury House, Birmingham City University \nWestbourne Road \nBirmingham  \nB15 3TN \n0121 331 6067 \nAmie.Randhawa@mail.bcu.ac.uk \nDr Angela Hewett, PhD Supervisor \nBevan House, Birmingham City University \nWestbourne Road \nBirmingham  \nB15 3TN \n0121 331 7177 \nAngela.Hewett@bcu.ac.uk \n \n \n \n \n \n \n \n \n \n \nMenstrual health awareness and attitudes study – Parent Form for Non-Participation in \nQuestionnaire \nPlease only return this form to the school if you do not want your daughter to participate in this \nstudy. \nPlease return this form by [date]. Forms to be handed to form teachers. \n \nI do not wish for my daughter to participate in this study and ask that she does not complete a \nquestionnaire. \nDaughters name: ………………………………………………………………………………………………………………….. \nClass: …………………………………………………………….. \nName of School: …………………………………………………………………………………………………………………… \n \nSigned (parent/guardian): …………………………………………………………………. Date: ……………………… \n\n \n279 \n \nSchool Logo \nAppendix 17: Study 2 Parent Information Sheet and Consent Form - Opt In \n \n \nParent Information Sheet \nVersion 2.0 \nDated: 13/06/2017 \nMenstrual health awareness and attitudes among teenagers \n \nName of Researcher: Amie Randhawa \n \nDear Parent/Guardian, \n \nWe would like to invite your daughter to take part in our research study. We will be attending [name \nof school] on the week commencing [date] to ask all girls between the ages of 15 and 19 to complete \na questionnaire for our research. Before you decide whether you are happy for her to take part, \nplease read the following information to understand why the research is being done and what it \nwould involve for your daughter. If you have any further questions or anything is unclear please do \nnot hesitate to contact us. \n \nWhat is the purpose of the study?  \nThe aim of this study is to explore menstrual patterns, attitudes and awareness among teenagers in \nthe UK. There is currently a lack of research which specifically addresses these issues within a UK \nsetting, and it is hoped that by obtaining information on teenagers’ awareness and attitudes, we \nmay better understand the health and educational needs of adolescents around these topics.  \n  \nWhy has my daughter been invited?  \nYour daughter is being invited to take part because she attends a local school that has agreed to be \ninvolved in the research. We are inviting many teenagers to take part from a number of schools in \nthe local area.  \n  \nDoes my daughter have to take part?  \nThe study is voluntary so it is up to your daughter to decide whether or not she wishes to take part.  \nIf she does wish to take part she will be required to give her consent by completing and signing the \nconsent form. As your daughter is under the age of 16, she will also require your consent to \nparticipate as well. If you are happy for her to take part then please complete and return the \nconsent form at the end of this letter by Friday [date – Friday before week of data collection]. Please \nnote that once consented into the study, your daughter is still free to withdraw at any time and \nwithout giving a reason. \n \nWhat will taking part in the research involve?  \nThis research involves the completion of a short questionnaire, which will be done during school \nhours at an allocated time. The questionnaire will include some brief demographic questions, such \nas age and ethnicity, and then a short series of questions about usual periods and their attitudes \ntowards menstruation. The final part of the questionnaire involves questions about menstrual health \nawareness and education preferences. There are no questions about sexual activity. Participants can \nchoose to leave out any questions that they are not comfortable with completing. The survey will \ntake approximately 5-10 minutes to complete. \n \n\n \n280 \n \nIs the study anonymous? \nYes, all the information collected during the study is anonymous. We do not ask for any information \nthat could identify the participants and when we write up the results of the study they will be \nreported in a way that does not identify individual participants.  \n  \nWhat are the possible benefits of taking part?  \nAlthough there are no direct benefits for taking part, the information we get from those who \nparticipate in this study may help to enhance our understanding of the educational needs of \nteenagers about menstruation. Therefore each individual’s participation is highly valued.   \n \nWhat if there is a problem?  \nIf you have a concern about any aspect of this study, you should speak to the researchers who will \ndo their best to answer your questions.  The researchers’ contact details are given at the end of this \ninformation sheet. If your questions are not adequately answered then please contact the project’s \nSupervisor, Dr Angela Hewett (contact details also below). \n  \nWill taking part in the study be kept confidential?  \nWe will follow the ethical guidelines as set out by Birmingham City University and all information \nabout participants will be handled in confidence.  \n  \nIf your daughter joins the study, then the researcher, Amie Randhawa, will be the primary person \nwho will look at the data collected. The data may also be looked at by the supervisors of the PhD \nproject to check that the study is being carried out correctly. All will have a duty of confidentiality to \nyour daughter as a research participant and we will do our best to meet this duty.   \n  \nAll information which is collected during the course of the research will be kept strictly confidential, \nstored in a secure and locked office, and on a password protected database, accessible only to the \nprimary researcher, Amie Randhawa.  Any information about participants which leaves the \ninstitution will be anonymised and a unique code will be used so that participants cannot be \nrecognised from it.    \n  \nResearch data will be kept on an encrypted database for 7 years, which only the researcher, Amie \nRandhawa will have access to. After this time the data will be disposed of securely.   \n \nYour daughter’s school may be provided with a summary of the results of the research. Please be \nassured that this summary will not identify any individual participants or their responses. \n \nWhat will happen if my daughter doesn’t want to carry on with the study?   \nParticipation in this study is voluntary and your daughter is free to withdraw at any time, without \ngiving any reason. If she wishes to withdraw at any time during questionnaire completion, then she \ncan indicate this to the teacher or the researcher (who will also be present). If she wishes to \nwithdraw after completion of the questionnaire she can contact Amie Randhawa (contact details \nbelow) to inform her of her decision to withdraw. If she does decide to withdraw, all the information \nprovided by your daughter will be destroyed and not used further in the research. \n  \nWhat will happen to the results of the research study? \nThe results of the research will be written up as part of an educational qualification, a PhD thesis and \nmay also get published in academic journals and used in presentations about the study. Please be \nassured that your daughter will not be identified in any report or publication.   \n \n \n\n \n281 \n \nWho has reviewed the study?  \nAll research at Birmingham City University is reviewed by independent group of people, called a \nResearch Ethics Committee, to protect your interests. This study has been reviewed and given \nfavourable opinion by the Faculty of Health Research Ethics Committee.  \n \nFurther information and contact details  \nIf you have a concern about any aspect of this study, please do not hesitate to contact: \n \nAmie Randhawa, PhD Candidate \nRavensbury House, Birmingham City University \nWestbourne Road \nBirmingham  \nB15 3TN \n0121 331 6067 \nAmie.Randhawa@mail.bcu.ac.uk \nDr Angela Hewett, PhD Supervisor \nBevan House, Birmingham City University \nWestbourne Road \nBirmingham  \nB15 3TN \n0121 331 7177 \nAngela.Hewett@bcu.ac.uk \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n\n \n282 \n \n \n \nParent Consent Form \nVersion 1.0 \nDated: 18/05/2017 \n \nMenstrual Health Awareness and Attitudes among Teenagers \nPlease detach and return this form to the school if you are happy for your daughter to participate in \nthis study. \nPlease return this form by Friday [date]. Forms to be handed to form teachers. \n \nIn relation to this research, I have read the Parent/Guardian Information Sheet and have been made \naware of the following points: \n \n8. My daughter’s participation in this study involves the completion of a questionnaire which will \nask about her usual periods, her attitudes towards menstruation and her general awareness \naround menstrual health. \n \n9. My daughter’s participation is voluntary and she  is free to withdraw at any time, without giving \nany reason. \n \n10. I understand that the information my daughter provides will be anonymised, and her  personal \ndetails will be kept confidential. \n \n11. I understand that information about my daughter that is  recorded during the study will be kept \non a secure database. Data will be kept for 7 years after the study has ended.  \n \n \nAfter considering these points, I agree for my daughter to take part in the above study. \n \n \n \n……………………………………………….  …………………………………………..  ………………….. \nName of Parent/Guardian  Signature    Date \n \n \n \nName of daughter: ……………………………………………………. \n \nClass: …………………………………………………………….. \n \n  \n\n \n283 \n \nAppendix 18: Study 2 Participant Consent Form \n \n \n \n\n\n \n284 \n \nAppendix 19: Study 2 Survey \n \n \n\n\n \n285 \n \n \n\n\n \n286 \n \n \n\n\n \n287 \n \n \n\n\n \n288 \n \n \n\n\n \n289 \n \n \n\n\n \n290 \n \nAppendix 20: Study 2 Ethics Approval Letter \n \n \n \n  \n\n\n \n291 \n \nAppendix 21: Study 2 Further Information Sheet for Participants \n \n \nFurther Information Sheet \nMenstrual Health Awareness and Attitudes amongst Teenagers \n \nThank you very much for taking part in our research. \nThe information you have provided will be used to help us understand typical menstrual patterns for \nteenagers in the UK, as well as how they feel about their periods. We are also interested to learn \nwhether teenagers are aware of endometriosis, and if there is any way to improve education about \nendometriosis to help people to recognise the symptoms earlier and perhaps get an earlier \ndiagnosis.  \nIf you would like further information about any of the topics covered in the research, then please \nhave a look at the further information sources outlined below: \n1. Teens Health – All about menstruation (for teens) \nThis website provides general information about menstruation (periods) and is written \nespecially for teenagers. Here you will find information about puberty, the menstrual cycle, \nand some of the symptoms of a period you can expect (such as cramps and spots). There is \nalso lots of other information about teen health on the website which you might find \ninteresting. \nhttp://teenshealth.org/en/teens/menstruation.html?WT.ac=t-ra#  \n \n2. NHS Choices – Period pain \nThis webpage is run by the NHS and it provides information on period pain, what is regarded \nas ‘normal’ pain, and when you should consider seeing your GP about your period pain: \nhttp://www.nhs.uk/Conditions/Periods-painful/Pages/Introduction.aspx  \n \n3. Endometriosis UK \nEndometriosis UK is a national organisation that provides reliable information about \nendometriosis. Their website address is: https://www.endometriosis-uk.org/. They also have \na webpage aimed specifically at teenagers, which you can find at the following link: \nhttps://www.endometriosis-uk.org/Information-teenage-girls   \n \n4. Your Healthcare Providers \nIf you are concerned about any of your symptoms or need any advice then please contact \nyour GP (local Doctor) or speak to your school nurse.  \n \nIf you have any further enquiries about the research, please contact Amie Randhawa, or her \nsupervisor Dr Angela Hewett: \nAmie Randhawa    Dr Angela Hewett \nBirmingham City University   Birmingham City University \n0121 331 6067     0121 331 7177 \nAmie.Randhawa@mail.bcu.ac.uk  Angela.Hewett@bcu.ac.uk \n\n \n292 \n \nAppendix 22: Study 2 Verbal Instructions for Survey Completion \n \nAdolescent Menstrual Health Survey  \nInstruction Sheet - to be read out by Teacher/School Staff/Researcher \n \nPlease provide all students with a survey, and then give them the following instructions: \n \nTo start with, please read the consent form on the front page, and then place a tick in each \nof the boxes down the right-hand side next to each point. Then write your name, the date, \nand your signature where indicated at the bottom of the page. \nBefore moving on to the survey, I have a few instructions for you: \n• Complete the survey using a pen (not a pencil). \n• Work through the survey in the order in which it is presented. \n• Please read the questions carefully, and the responses that are required for each \nquestion. For example, some questions may ask you to tick just one response, \nwhereas others may say to tick as many responses as you like. Please be sure to \nfollow these guidelines. \n• Please remember that there are no right or wrong answers to any questions, and if \nyou are asked for your opinions, please give them honestly. The results are \nanonymous so no one will be able to link the answers you give back to you. \n• This is not a test, but please don’t talk about your answers while filling in the survey \n– the researchers are really interested to hear your own experiences and opinions. \nYou can now begin the survey. \n \nOnce surveys are completed, please collect them all in and then provide all students with the \n‘Further Information Sheet’. \n \nN.B. Please ensure that students don’t discuss their answers between themselves, or use \nphones/tablets to look up any information. \n \n  \n\n \n293 \n \nAppendix 23: Study 2 Missing Data Analysis \n \nSurvey Item N Missing \ncount \nMissing \npercent \nAge 437 5 1.1 \nEthnicity 430 12 2.7 \nSchool Type 438 4 0.9 \nHad first period? 442 0 0 \nAge First period 433 9 2 \nLength of period/bleeding 429 13 2.9 \nLength of cycle (over 14 days) 177 265 60* \nRegularity of cycles 409 33 7.5 \nExperience period pain? 439 3 0.7 \nPain severity 409 33 7.5 \nMedication for pain? 416 26 5.9 \nEffectiveness of medication 266 176 39.8 \nMiss School due to periods? 440 2 0.5 \nEver taken contraceptive pill? 439 3 0.7 \nEver seen a GP about periods? 441 1 0.2 \nConsider periods typical/not sure/not typical 434 8 1.8 \nMenstruation is something I just have to put up with 439 3 0.7 \nWomen are more tired than usual when they are menstruating 440 2 0.5 \nMenstruating is a sign of womanhood 440 2 0.5 \nMenstruation can adversely affect my performance in sport 437 5 1.1 \nI envy boys because they don’t have menstruation 438 4 0.9 \nMenstruation is something to be happy about 439 3 0.7 \nWhen I have my period, I am worried that I’ll have an accident 437 5 1.1 \nI am more easily upset during my period that at other times of the \nmonth \n436 6 1.4 \nPeriods are positive, negative, don’t mind 431 11 2.5 \nDo you know what endometriosis is? 437 5 1.1 \nDo you want to learn about endometriosis? 439 3 0.7 \nDo you think boys should learn about endometriosis too? 435 7 1.6 \n*Many participants left this item blank and ticked ‘don’t know’ or ‘irregular periods’  \n  \n\n \n294 \n \nAppendix 24: Study 2 Findings Published in the Journal of Pediatric and \nAdolescent Gynaecology \n \nTitle Page \n \nTitle: Secondary School Girls’ Experiences of Menstruation and Awareness of Endometriosis: A \ncross-sectional study \nAuthors: \nA. E. Randhawa, MSc, Centre for Social Care, Health and Related Research, Birmingham City \nUniversity, 4 Cardigan Street, Birmingham B4 7BD, UK \nA. D. Tufte-Hewett (Corresponding Author*), PhD, Department of Psychology, Birmingham City \nUniversity, 4 Cardigan Street, Birmingham B4 7BD, UK \nA. M. Weckesser, PhD, Centre for Social Care, Health and Related Research, Birmingham City \nUniversity, 4 Cardigan Street, Birmingham B4 7BD, UK \nG. L. Jones, DPhil, Department of Psychology, School of Social Sciences, Leeds Beckett University, \nLeeds LS1 9HE \nF. G. Hewett, MSc, MBChB, Manor Practice, James Preston Health Centre, 61 Holland Road, Sutton \nColdfield, West Midlands, B72 1RL \nSite of Study: West Midlands, England \nFunding: Birmingham City University’s Faculty of Health, Education & Life Sciences \nDisclaimers: None \n*Corresponding Author: Dr Angela Hewett, Phone: 0121 202 4205, Fax: N/A, Email: \nangela.hewett@bcu.ac.uk, Birmingham City University, 4 Cardigan Street, Birmingham, B4 7BD \n \n \n \n \n \n \n \n \nWord count of abstract and main text (excluding title page, acknowledgements, references and \ntables): 250 (Abstract), 3165 (main text) \n \n\n \n295 \n \n \nTitle: Secondary School Girls’ Experiences of Menstruation and Awareness of Endometriosis: A \ncross-sectional study \n \nStructured Abstract \nStudy Objective:  To characterise typical (ie, normal) menstrual characteristics in a large sample of \nsecondary school girls, as well as knowledge of typical menstruation, endometriosis awareness and \neducational needs. To establish whether self-reported atypical period symptoms indicate menstrual \ncharacteristics suggesting the need for further clinical review for a specialist opinion.  \nDesign: Cross-sectional survey.  \nSetting: Secondary schools in West Midlands, England.   \nParticipants: 442 girls, 15-19 years. \nInterventions and Main Outcome Measures: The questionnaire determined demographic \ncharacteristics, age at menarche, menstrual cycle patterns and experiences, awareness of \nendometriosis, and preferences for learning about it.  \nResults: Period pain was common (94%), with pain reported as moderate/severe (86%).  Girls \nreported missing school due to their periods (23%), mainly due to pain.  Most believed their period \nwas typical (63%); however, 27% were unsure, and 30% did not know if it was regular. Self-report of \natypical periods was associated with symptoms suggesting need for clinical review and with \nconsulting a doctor (χ²(2) = 36.272, p < 0.001). Only 8% could describe endometriosis, though 86% \nwanted to learn more about it. \nConclusion: Most secondary school girls report dysmenorrhea. Although most reporting atypical \nperiods had seen a doctor, over a quarter did not know whether their period was typical or regular.  \nThe majority do not have knowledge of endometriosis, contrasting with adolescents’ familiarity with \nother common chronic conditions such as diabetes and epilepsy. We suggest Menstrual Health \nEducation (MHE) to improve knowledge of typical menstruation and pain treatment, aiding earlier \nidentification of problematic period symptoms that might indicate underlying pathology. \n \n \n \n \nKey Words: Adolescent, menstruation, dysmenorrhea, endometriosis, delayed diagnosis, education \n \n \n  \n \n\n \n296 \n \nIntroduction \nMenstrual pain (dysmenorrhea) is the main gynaecological complaint of adolescents.1 The majority \nof adolescents with menstrual pain have primary dysmenorrhea, painful menstruation in the \nabsence of pathology, but a significant minority have secondary dysmenorrhea, painful menses due \nto pelvic pathology.2 Endometriosis, the chronic condition defined by the presence of endometrial \ngland and stroma outside the uterine lining, is the leading cause of secondary dysmenorrhea as well \nas chronic pelvic pain (CPP) in this age group.2, 3 Approximately two-thirds of adolescent girls with \nCPP or secondary dysmenorrhea who undergo laparoscopy have evidence of endometriosis.4,5    \nThe true prevalence of adolescent endometriosis is unclear due to delayed recognition and \nintervention.3,6 Two to 10% of women of reproductive age have endometriosis,7 and a majority of \nthose diagnosed as adults report first experiencing symptoms in adolescence.8, 9 Delays from \nsymptom onset to diagnosis can result in persistent chronic pain, significant adverse impacts on \nquality of life,10,11 potential progression of the disease,12 and possible infertility.13  Adolescents \nunaware of typical menstrual characteristics may not recognise, or seek out help for, abnormal \nsymptoms.14,15 This study aims to characterise typical menstrual characteristics in a large sample of \nsecondary school girls, and to explore this age groups’ knowledge of typical menstruation, \nendometriosis awareness and educational needs. An additional further aim is to establish whether \nthose who experience menstrual characteristics that might indicate the need for clinical review and \nspecialist opinion, report their period to be atypical. \n \nMaterials and Methods \n \nParticipants and setting \nA descriptive cross-sectional survey study was carried out with secondary school girls aged 15 to 19 \nyears old. AR recruited participants from secondary schools in the West Midlands, England. Schools \nincluded an independent girl’s school (A), an independent mixed-sex boarding school (B), and a \ngovernment run mixed-sex academy school (C), representing a diverse range of recruitment sites. \nNon-random convenience sampling was used. \nQuestionnaire and Procedure \nA self-administered pen and paper survey was designed specifically for this research. The survey \nconsisted of questions newly developed to meet the aims of the study and also included existing \nquestions used by other researchers conducting similar studies.16-19,26 AR and AH developed \n\n \n297 \n \nsurvey questions in consultation with GR and AW. The final questionnaire consisted of four sections: \n1) demographic characteristics (e.g. age, ethnicity, and school type); 2) age at menarche, cycle \npatterns, and menstrual experiences; 3) preferences for communicating about menstruation with \nothers; and 4) awareness of endometriosis, and preferences for learning about it in future.  \nThe opening question to section four was ‘Do you know what endometriosis is?’ Respondents who \nanswered ‘yes’ were then asked to describe endometriosis in their own words. This allowed for the \nassessment of respondents’ levels of awareness and understanding, in line with previous \nendometriosis research.18 After being asked if they know what endometriosis is, as done in previous \nsimilar surveys with adolescents,18 a short lay (non-medical) description of endometriosis, was \nprovided to participants on a separate page.  The description was based on a definition of the \ncondition employed in an information leaflet produced for teenagers by Endometriosis UK in 2014.  \nParticipants were then asked if they would like to learn more about endometriosis, as well as how \nthey would like to learn about it, who they were comfortable talking about it with and whether they \nthought boys should learn about it too. \nThe survey was piloted with 10 girls from the target population (aged 15-19) to assess the clarity of \nwording, acceptability of formatting, and ease of implementation. Following pilot testing, data \ncollection was completed between November 2017 and March 2018. At least a week prior to survey \ncompletion, all female students meeting the target criteria were given verbal information about the \nresearch by the first author or a teacher at their school. They were also given a study information \nsheet, and a parent/guardian information sheet if under 16 years. Schools were given the choice \nbetween opt-in and opt-out parental consent as they were best positioned to know which would be \nmost acceptable to students and parents/guardians. One school (A) requested that all students were \ngiven the parent/guardian information sheet and used opt-in parental consent, whilst two schools (B \n& C) used opt-out parental consent for under 16s. Participants had the opportunity to ask questions \nbefore providing consent and completing the survey. Survey completion took approximately 5-10 \nminutes. \nEthics and Data Analysis \nThe university ethics committee at Birmingham City University granted ethical approval for this \nstudy. After survey completion, all participants received a leaflet signposting relevant and locally \naccessible health and support organisations should they want further information, or have concerns \nabout, their menstrual health. All questionnaires were reviewed and checked for completion and \naccuracy by the principal investigator before inputting the data into an electronic database using a \npre-constructed codebook. Responses to the free-text question asking participants to define \n\n \n298 \n \nendometriosis were transferred into QSR’s NVivo 11, to be coded using content analysis, in line with \nprevious endometriosis research.18 AR read and re-read the answers to enable familiarisation, and \nthen they were grouped to obtain categories. Final categories were reached upon agreement by two \nresearchers (AR & AH). Each category was given a number to allow for further statistical analysis.   \nData was analysed using SPSS Version 24. Tests for normality were performed on the continuous \nvariables (i.e. current age, age of menarche), which were found to be non-normally distributed. \nTherefore, subsequent analysis of data used either the Mann-Whitney U test or the Kruskal-Wallis \ntest for continuous data, and Chi-squared tests for the categorical data. For the latter, if expected \ncell counts were less than 5 for >20% of the cells,  a Fisher’s exact test was used for 2x2 tables, and a \nlikelihood ratio chi-squared test for larger tables.20   A p value of <0.05 was considered to show a \nstatistically significant result. \n \nResults \n \nSample Demographic Characteristics and Menstrual Experiences \nA total of 442 secondary school girls, aged 15 to 19 years, participated in the survey, with a median \nage of 17 years. The overall response rate to the survey was 53%. \nAt the time of survey completion, 99.5% of participants had started their periods (440/442). The \nmedian age of menarche was 12.5 years and ranged from 9 to 16.42 years. Most participants \nreported menstrual bleeding between 4 and 7 days (88.9%), and the median duration was 5 days. \nOnly 48.6%, of the sample reported the length of their menstrual cycle, and for those reporting \nbetween 21-45 days, the median length was 28 days. Irregular periods were reported by 31.3% of \nresponders, and 29.6% indicated that they did not know the length of their cycle. Those who \nprovided the length of their cycle, and did not tick ‘don’t know’ or ‘irregular periods’ were assumed \nto have regular periods (39.1%). The full response rates by school, demographic and menstrual \nbleeding pattern information collected for the sample are shown in Table I. \nTable I. Sociodemographic factors and menstrual bleeding patterns. \nTable II shows period pain rates for the sample as well as medication usage and school absences. \nTheir pain responses were categorised as ‘mild pain’ (answers 1 to 3), ‘moderate pain’ (4-7), and \n‘severe pain’ (8-10), using the similar cut-off scores as in previous research.16   The effectiveness of \ntheir pain medication was rated from 0 to 10, and these responses were categorised into ‘no/low \n\n \n299 \n \neffectiveness’ (0 to 3), ‘moderate effectiveness’ (4-7), and ‘high effectiveness’ (8-10), using the same \ncut-off scores as in previous research.16    \nSchool absence due to periods was reported by 100 (22.7%) responders with the majority missing 1 \nday, and 2 days given as the maximum response. The reason most often stated was that their period \nwas ‘too painful’ (91.0%). Almost a third of the sample had visited a doctor about periods (29.5%).  \nTable II. Menstrual pain, medication use and school absence \n \nPerceived typicality of periods \nParticipants indicated whether they thought their periods were typical (ie, normal) for someone \ntheir age, with 274 (63.1%) responding ‘yes’, 44 (10.1%) responding ‘no’, and 116 (26.7%) \nresponding ‘unsure’. Further analysis was conducted using this data to examine if those who \nperceive their period to be atypical also report symptoms comparable with National Institute for \nHealth and Care Excellence (NICE) criteria31 for referral for further clinical review and specialist \ninvestigation. NICE guidelines are standard clinical guidelines developed for the UK National Health \nService and are developed by independent committees comprised of professionals, members of the \npublic, and relevant stakeholders.  Finally, knowledge of endometriosis was compared across the \ngroups according to whether the girls thought their period was typical for someone their age.  \n \nGrouping by Self-reported Typicality of Period \nThe girls who believed that their periods were not typical for someone their age were more likely to \nreport irregular periods (χ²(2) = 46.42, p < 0.001), take medication for period pain (χ²(2) = 8.75, p < \n0.05), take oral contraceptive pills (OCPs) (χ²(2) = 9.58, p < 0.01), have knowledge of endometriosis \n(χ²(2) = 8.75, p < 0.05), and have seen a doctor about their periods (χ²(2) = 36.272, p < 0.001). Pain \nseverity ratings were significantly different between the groups, with those who thought their \nperiods were typical having lower pain scores than those who thought their periods were not typical \nand those that were unsure (H(2)=11.62, p = 0.003). Those who thought that their periods were not \ntypical also reported that their pain medication was less effective than those who reported that their \nperiods were typical (H(2)=10.465, p = 0.005). Although school absence was not significantly related \nto perceived typicality (i.e., ‘normalness’) of periods, it was related to pain severity, with those in the \nhighest pain group (8-10 on the pain scale) missing more school (χ²(2) = 49.78, p < 0.001). \n \n\n \n300 \n \nAwareness of Endometriosis \nAlthough forty-four participants (10.1%) answered ‘yes’ to the question ‘Do you know what \nendometriosis is?’, forty-six participants provided a description of endometriosis, which were coded \nand categorised into description types. Only 8.2% went on to accurately describe the condition. \nDescriptions were based on symptoms, the biological mechanisms involved in endometriosis, or a \ncombination of both. Pain as a symptom was mentioned most frequently, representing 50% (23/46) \nof descriptions. Descriptions including biological mechanisms were based on the lining of the womb \nappearing elsewhere (15/46) and blood being unable to leave the body (5/46). Some descriptions \nwere vague, or did not capture any element of the definition of endometriosis. Five responders’ \ndescriptions were simply of a period, and four could be categorised as ‘something to do with a \nperiod’, which was likely evident given the nature of the survey. Participants who stated that they \nknew what endometriosis was also indicated how they knew; almost half (21/43) knew about \nendometriosis from the internet or media. \nThe majority of participants (85.9%) indicated that they would like to learn more about \nendometriosis. Over half (51.3%) indicated school as their preferred source of learning, via lessons or \nthe school nurse. However, only 26.5% indicated they were comfortable discussing endometriosis \nwith a schoolteacher. The majority of participants (82.8%) thought boys should learn about \nendometriosis as well.   \n \nDiscussion \nThis study characterises typical menstrual characteristics for secondary school girls; it explores this \nage groups’ knowledge of typical menstruation and awareness and educational needs regarding \nendometriosis. It further establishes if self-reported atypical period symptoms indicate menstrual \ncharacteristics suggesting the need for further specialist clinical review.   \nThis study demonstrates the critical need for improved adolescent menstrual health education \n(MHE). One in four girls (27%) were unsure if their periods were typical, 1 in 10 (10%) considered \ntheir periods non-typical and nearly 1 in 3 (30%) did not know if their periods were regular. Female \npupils report available MHE provision to be overly abstract (focused on the biological aspects of \nmenstruation) and that it does not address their concerns about whether their periods are \n‘normal.’21-24 Those unaware of typical menstrual characteristics may not recognise, or seek out help \nfor, abnormal symptoms.14,15     \n\n \n301 \n \nPain remains a significant factor in girls’ period experiences, with a majority (86%) reporting their \nperiod pain to be moderate or severe, reflecting similarly high levels of adolescent dysmenorrhea \nfrom past research1,17,25-30. Nearly 1 in 3 girls report visiting a doctor about their periods, a rate \nreflecting the wide-spread experiences of pain and uncertainties around typical menstruation. \nPeriod pain is the primary reason for missing school (91%) and those with severe pain are more likely \nto miss school (45%). While most girls (66%) have taken medication or OCPs to manage pain, a \nsignificant number have not. Girls want to learn more about menstrual cramps and how to manage \npain.24 A key component, therefore, of MHE is the inclusion of discussions of pain treatment options, \nincluding medication options such as non-steroidal anti-inflammatory drugs and OCPs. \nThis study demonstrated that those reporting non-typical periods were significantly more likely to \nreport irregular periods, severe period pain, taking medication for period pain, finding medication \ninadequate for pain, taking OCPs, seeing a doctor about their periods, and knowing what \nendometriosis is. Contact with medical services might have resulted in OCP prescriptions, as well as \ndiscussions with health care professionals about possible endometriosis. As per recent clinical \nupdates3 and UK and European guidelines,7,31 those reporting higher pain levels and ineffective pain \nrelief from medication exhibit atypical periods indicative of the need for possible clinical review for a \nspecialist opinion.   \nFindings also demonstrate the acute need for improved endometriosis awareness amongst \nadolescents. Only 8% of secondary school girls knew what endometriosis was, approximately half \nthe rate in Italy (19%)19 and a third of that in Australia (24%).17   Adolescents in the general \npopulation report comparatively high familiarity with other health conditions.32 The majority are \nfamiliar with asthma (88%), arthritis (84%), diabetes (81%), HIV/AIDS (78%), and breast cancer \n(72%); approximately one-third are familiar with Parkinson’s disease (39%) and epilepsy (31%).32 \nGirls are considerably less aware of endometriosis than other chronic conditions with similar adult \nprevalence rates, specifically diabetes and epilepsy.    \nImproving individuals’ awareness of endometriosis may help improve time to diagnosis. The average \ndelay from symptom onset to diagnosis is eight years in the United Kingdom.33 In the United States, \nwhere referrals are not needed to access gynaecological specialist care, the average delay is four and \na half years.34 While improving adolescents’ knowledge of menstruation and endometriosis may \nreduce diagnostic times, stigma around speaking about periods must also be addressed, as research \nshows girls and adult women may be reluctant to speak about their menstrual health even with \nhealth professionals.35 Further, there is evidence health care professionals may dismiss or \n‘normalise’ the endometriosis symptoms of those who come to seek care.36 \n\n \n302 \n \nThis research showed that girls want to know more about endometriosis (86%), and school lessons \nare the preferred mode of learning about the condition (41%). Girls are less comfortable speaking \nwith their teachers (27%) than with school nurses (37%), doctors (44%), friends (56%) or parents \n(64%) about endometriosis. Previous research shows most teen girls (63%) are uncomfortable \ntalking about periods with teachers,37 thus, as found elsewhere,38 students may prefer outside \nexperts (youth workers, sexual health professionals, etc.) deliver MHE content. Girls worry about \nbeing shamed at school about their periods, particularly by boys.23,39 The majority of girls feel boys \nshould learn about endometriosis (83%), and inclusion of boys in general MHE could reduce period-\nrelated bullying.24,37 \nIn addition, MHE needs to allow girls to not just learn about biological factors associated with \nmenstrual cycles and menstrual bleeding, but also provide safe spaces for girls to discuss what \nhaving a period is really like for them.  Research shows that girls want to discuss the psychological \nand social aspects of having a period – not just the biological aspects.21,23,24,40 Gunson et al., (2016)41 \nfound that overly positive and naturalistic descriptions of menstruation could lead girls to feel that \ntheir experiences did not live up to expectations.  Most adolescent girls feel comfortable talking \nabout menstruation with female friends,37 and this allows them to provide support for each other \naround the aspects of menstruation that girls view negatively.42 MHE should also take into account a \nwide age-range since although the average age of menarche was 12.5 in this study, some girls \nstarted as early as 9.  MHE would therefore ideally start early and continue in an ongoing fashion, \ninstead of as a one-off.   \n \nStrengths and Limitations \nThe survey was modelled on those from similar previous studies16-19 and designed to address this \nstudy’s aims. A limitation was an absence of validated questionnaires to draw upon.  Despite the \npilot study indicating that the questionnaire was fit for purpose, some main survey respondents \nconfused the length of their period with the length of their menstrual cycle (resulting in 37 \nrespondents reporting menstrual cycles of between 2 and 7 days). The 23 respondents linking \nendometriosis to pain in their descriptions of the condition may have deduced this connection from \nsurvey questions focused on their period pain experiences. However, as only 5% of the total number \nsurveyed responded to the endometriosis definition question with an answer including pain, it does \nnot appear to have overly influenced the results on endometriosis awareness. It is also worth noting \nthat a higher percentage of girls may have reported wanting to learn about endometriosis because \nthe condition was introduced to them in this survey, therefore increasing its salience. The survey did \n\n \n303 \n \nnot include questions regarding secondary school girls’ experiences of heavy menstrual bleeding, a \ncommon adolescent gynaecological concern and possible symptom of underlying pathology43 that \nwarrants investigation in future research.  The frequency of OCP use was somewhat low in this \nsample (13.7%). Previous research44 suggests that the percentage of girls receiving a prescription for \nOCPs in the UK is 19%. The low frequency of OCP use may also be due to delays in access reported \nfor adolescents in the UK.45 It is possible that cycle length, perceived cycle regularity and pain levels \ncould have been influenced by OCP use; however, as described above, the percentage of the sample \nusing OCPs was low. The survey did not include questions regarding use of other menstrual \nmanagement or contraceptive medications (e.g. intrauterine devices, contraceptive injections, etc.).  \nTo our knowledge, this is the first England-based study on the typical experience of menstruation for \nadolescents (of any age) as well as their knowledge of typical menstruation and endometriosis. Only \ntwo recent similar studies on menstrual characteristics in adolescents and young women have been \nconducted in Australia17 and Italy.19 This study had a large and ethnically diverse sample, nearly half \n(49.1%) of participants identified as Asian, 35.8% as White, 10.7% as Black and 4.4% as Mixed Race. \nSuch diversity is important given menstrual experiences of ethnic minority populations have been \nunder-represented in the literature previously.14-19,37 \n \nConclusion \nMost secondary school girls experience period pain, many do not know if their periods are regular or \ntypical, and an overwhelming majority do not know what the common chronic condition \nendometriosis is. Findings demonstrates the critical need for better MHE provision to improve girls’ \nknowledge of typical menstruation and period pain experiences, pain management options, and \ncommon gynaecological health conditions. Such provision is key to improving girls’ menstrual health \nknowledge, experiences and outcomes.    \n \nAcknowledgements \nThe authors thank all those who took part in the survey and the schools that facilitated this \nparticipation. Gratitude is also expressed teachers from participating schools as well as \nrepresentatives from Endometriosis UK whose opinions we sought on the acceptability of the \nwording of the survey. Thank you also to Dr. Jeffrey Wood who consulted on the statistical analyses \nfor the paper.  \n\n \n304 \n \n \nDisclosure/Conflicts of Interests \nNone. \n \nReferences \n1. De Sanctis V, Soliman AT, Elsedfy H, et al: Dysmenorrhea in adolescents and young adults: a \nreview in different country. Acta Bio Medica Atenei Parmensis 2016; 87:233 \n2. ACOG: Dysmenorrhea and endometriosis in the adolescent. ACOG Committee Opinion No. \n760. American College of Obstetricians and Gynecologists. Obstet Gynecol 2018; 132:e249 \n3. 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