{"paper_id":"1797a18b-cebf-44dd-ba2e-6acba60d6b00","body_text":"“So many women suffer in silence”: A thematic analysis of women’s written accounts of \ncoping with endometriosis \n \n \n \nRUNNING HEAD: EXPERIENCES OF ENDOMETRIOSIS \n \n\nEXPERIENCES OF ENDOMETRIOSIS  \n 2 \n \n \nAbstract \nObjective: To understand women’s experiences of coping with endometriosis, and impact on \ntheir lives. \nDesign: Women accessed an online questionnaire through a UK-based endometriosis charity \nwebsite. \nMethods:  Thirty-four women, aged 22-56 years, with self-reported medically-diagnosed \nendometriosis, 30 of whom were White, responded to open-ended questions, analysed using \ninductive thematic analysis. \nResults: Participants spoke about their lives being a constant struggle, where they tried to \nmaintain their personal and working lives whilst dealing with long-term pain. Women had to \n“battle” for an accurate diagnosis, and had limited faith in health professionals. Coping \nstrategies included avoidance of social events to conserve energy (self-pacing), and avoiding \ntaking painkillers to retain alertness. Women did not feel able to be honest with family and \nfriends about their symptoms, and felt socially isolated and misunderstood.  \nConclusions: Implications for health professionals are discussed, including the need for \nearlier diagnosis and taking women’s symptoms more seriously at referral; understanding the \nneed to conserve energy in the context of long-term pain; that not taking pain medication may \nbe an active choice to retain alertness; and that avoiding being honest with friends and family \nand subsequent feelings of isolation may be common experiences relevant to designing \ntreatment programmes.     \nKey words: endometriosis, thematic analysis, women’s health, pain, non-adherence       \n\nEXPERIENCES OF ENDOMETRIOSIS  \n 3 \n \n \n“So many women suffer in silence”: A thematic analysis of women’s written accounts of \ncoping with endometriosis \nEndometriosis is a relatively common condition in which tissue similar to the uterine lining is \nfound outside the uterus. Clinical studies suggest that it affects about one in ten women of \nreproductive age (Viganò et al., 2004; Endometriosis UK, 2017). Symptoms include heavy \nand/or painful periods, pelvic pain, fatigue, and bowel and bladder problems, and long term \neffects include infertility and chronic pain; treatments involve painkillers, hormone \ntreatments, and surgery to remove small patches of cells, or in some cases the entire uterus \n(American College of Obstetricians and Gynaecologists, 2010; National Health Service, 2017). \nThis study investigates women’s accounts of coping with endometriosis from the \nperspectives of women who have experienced this condition themselves. \nSome studies of the psychological impacts of endometriosis have found that the \ncondition impacts negatively on women’s wellbeing and quality of life. In a large-scale \ninternational study by DeGraaff et al (2013), where 931 women in 10 countries completed \nmeasures of work and social well-being, health quality of life, endometriosis symptoms and \neducation, endometriosis had a significant impact on work in 51% of the women sampled, \nand relationships in 50% of the sample. The authors concluded that women suffer from \nfrequent symptoms, in particular chronic pain and dyspareunia (pain during or after sexual \nintercourse), resulting in significantly reduced quality of life.  \nOther quantitative studies have suggested that, although dysmenorrhoea (painful \nperiods) has a significant impact on quality of life in women with endometriosis, chronic \npelvic pain and dyspareunia did not have any significant impact on quality of life in women \nwith endometriosis (Altinbas, Teklin, Dilbaz & Dilbaz, 2015), and have proposed that \nimpacts on quality of life of endometriosis are equivalent to other long term medical \nconditions (Friedl et al., 2014). However, these findings are widely disputed, and whether or \n\nEXPERIENCES OF ENDOMETRIOSIS  \n 4 \n \n \nnot women experience painful symptoms may be crucial in determining quality of life. \nFacchin et al. (2015) investigated the psychological impact of having asymptomatic \nendometriosis versus endometriosis with pelvic pain in 110 women with surgically diagnosed \nendometriosis, 78 of whom had pelvic pain, and 61 healthy controls. They found that women \nwith endometriosis who experienced pelvic pain had significantly poorer quality of life and \nmental health compared with those with asymptomatic endometriosis and the healthy \ncontrols.   \nAlthough interesting, quantitative work does not enable women to expand on and \nexplain their answers, and the format necessarily restricts what women are able to share about \ntheir condition.  Qualitative work enables exploration of women’s experiences from their \nown perspectives in some depth. Existing qualitative studies have used focus groups and \ninterviews to investigate impact on women’s lives, finding reduced self-reported quality of \nlife and wellbeing in women with endometriosis.  Facchin et al. (2017) interviewed 74 Italian \nwomen with endometriosis, and argued that participants recounted difficulties with doctors, \nfriends, and families who normalised or trivialised their pain, diagnostic delays which \nrepresented a major source of distress, and significant negative impacts on quality of life. \nMoradi et al. (2014) ran focus groups with 35 Australian women aged 17-53 with a history of \n2 to 40 years living with endometriosis to investigate impact on women’s lives. They found \nthat endometriosis impacted negatively on a number of aspects of women’s lives, including \nmarital/sexual relationships, social life, and physical and psychological factors, supporting \nquantitative work by authors such as De Graaff et al. (2014). Culley et al. (2017) and Hudson, \nCulley and Law (2016) also argue that endometriosis can have a significant negative impact \non the male partners of women with endometriosis, including self-reports of helplessness and \nfrustration, and significant disruptions to their relationships with their partners with \nendometriosis.  \n\nEXPERIENCES OF ENDOMETRIOSIS  \n 5 \n \n \n \nIn a review of 42 qualitative and quantitative papers from the UK, Australia, Brazil \nand the USA investigating the psychological impact of endometriosis on women’s lives, \nCulley et al. (2013) conclude that endometriosis has significant negative social and \npsychological impacts. This is also supported by a more recent systematic review of 18 \nqualitative papers utilising focus groups and interviews by Young, Fisher and Kirkman \n(2015). They found that results from focus group and interview studies suggested that \nendometriosis has a significant negative impact on women’s lives.  \nIn the Young et al. (2015) review, all studies used either focus groups or interviews, \nwith Whelan (2007) using both focus groups and an open-ended online questionnaire.  One of \nthe problems in using focus groups or interviews to understand impacts of endometriosis on \nwomen’s lives is that these methods may restrict disclosure; even in the most non-directive \ninterviews or focus groups, people are speaking face-to-face which may lead to perceived \npressure to present particular kinds of socially-acceptable accounts (see Willig, 2013). For \ninstance, women may be reticent about sharing stories that present them as ‘bad’/non-\nadherent patients (Kelly & May, 1982; Witry, LaFever & Gu, 2017) when they are \ninterviewed face-to-face by psychology researchers who may be perceived in health-\nprofessional-type roles.  \nOpen-ended online questionnaires such as used by Whelan (2007) have many \nadvantages (Hewson, 2017; Lee, Fielding & Blank, 2017), and we have found them \nparticularly useful when working with women with other long term conditions such as cancer \n(e.g. Authors, 2017). Online open-ended questionnaires can be very useful when researchers \nare interested in understanding the lived experiences of participants (Terry & Braun, 2017). \nThese kinds of questionnaires allow space to expand answers, and offer anonymity relative to \ninterviews or focus groups which, though not completely removing pressures for socially \n\nEXPERIENCES OF ENDOMETRIOSIS  \n 6 \n \n \ndesirable responses, can promote increased disclosure (Jowett, Peel & Shaw, 2011). People \nare also able to answer questions in their own time which enables careful reflection and can \nbe a significant advantage when working with people with painful or long-term conditions, \nwho can pace their answers to avoid fatigue (Purtell & Gibson, 2012). All these factors make \nonline methods potentially very useful when trying to understand women’s experiences of \nendometriosis.  \nThe Present Study \nIn order to plan treatment and support women appropriately, it is important to understand \nwomen’s own experiences of endometriosis, and how they cope with this long term \ncondition. This qualitative study aimed to understand women’s experiences of endometriosis \nand its impact on their lives and relationships. For the reasons outlined above, we used open-\nended online questionnaires, ensuring anonymity and enabling women to answer questions at \ntheir own pace, and in as much depth as they wished.  \nThis work uses a similar methodology to Whelan (2007) who accessed views of 18 \ngeographically diverse women with endometriosis in an open-ended online questionnaire. \nHowever, the present study will focus on women’s experiences and coping mechanisms \nrather than knowledge of the condition, and will access a larger sample of women. Also, the \ncurrent work will focus only on UK women, all of whom are likely to have accessed health \ncare services within the UK, so are a more homogeneous sample than Whelan’s more \ngeographically diverse group.  \nMethod \nDesign \nA qualitative approach was adopted, focusing on the experiences of women who self-reported \nas having medically diagnosed endometriosis. To encourage disclosure and ensure that \nwomen felt comfortable discussing their experiences, we asked them to complete a series of \n\nEXPERIENCES OF ENDOMETRIOSIS  \n 7 \n \n \nopen-ended questions anonymously through an online questionnaire, providing detailed \ninsight into their experiences. Data were collected using Qualtrics software.    \nRecruitment \nTo ensure that we accessed the views of a relatively wide range of women who had \nexperienced endometriosis, women were invited through a UK-based national endometriosis \ncharity. This network is open to any woman who has self-reported medically-diagnosed \nendometriosis. A message was posted on the main website by the site’s administrator, \ninforming members that the research team were recruiting participants to complete an online \nquestionnaire focusing on the experiences of living with endometriosis and its effect on \nwellbeing. Women were advised that the study had received ethical approval, and were given \na weblink for the research where they could access information on the study, consent form, \nand the open-ended questionnaire.  \nParticipants \nThirty-four, English-speaking women who reported that they had medically diagnosed \nendometriosis were recruited. Thirty women self-identified as White, one as Multiple Ethnic \nGroup White and Black Caribbean, one as Persian, one Asian, and one Black British. Ages \nranged between 22-56 years, and women had been diagnosed with endometriosis between \none week and 22 years before completing the study. Women had experienced symptoms of \nendometriosis for between 1.5-30 years at the time of the study. \nMaterials \nThe questions were constructed using previous literature on endometriosis as a guide. Due to \nthe exploratory nature of the research, questions were broad to allow women to share their \nthoughts and experiences.  Questions included the effects of endometriosis on daily life, the \nimpact(s) of endometriosis on relationships (partners, friends, family), work, social life and \nthe experience of living with endometriosis (see Appendix 1). \n\nEXPERIENCES OF ENDOMETRIOSIS  \n 8 \n \n \nProcedure \nEthical approval was granted through [blinded for review] ethics committee. The initial post \nfrom the website administrator gave participants a link to an anonymous Qualtrics \nquestionnaire. All women gave their informed consent to taking part in the study, including \nthe use of anonymised quotes in reports, through ticking a box on the online questionnaire to \nconfirm agreement. At the end of the questionnaire, women were also given the contact \ndetails (telephone and e-mail) of the second author to enable follow-up if they had any \nqueries or wanted more information about the study, as well as information on websites that \ncould provide further information and support on endometriosis.  \nData Analysis \nAll women responded to all questions, providing between one and 22 lines of text in answer \nto each question. Braun and Clarke's (2006) thematic analysis approach was employed to \nidentify themes, capturing women's understandings, and allowing an in depth analysis of the \ndata. Pseudonyms were assigned to participants and data were described, summarised, and \nthen interpreted in relation to broader implications. All three authors familiarised themselves \nwith the data by reading responses several times, whilst taking notes. Points of interest were \nnoted whilst reading and re-reading the transcripts. Each author then produced an initial set of \ncodes and a thematic map presenting themes and sub-themes. The first author then integrated \nelements of the three models into one thematic map and accounts were re-read to ensure that \ncoding was checked, and that nothing had been overlooked. Themes were reconsidered \nfollowing initial review of this paper, and further changes were made by the first author. The \nsecond and third authors cross-checked the final set of themes and were involved fully in \ntheir interpretation and write-up for dissemination, and all themes and quotes were agreed by \nall three authors.  \n\nEXPERIENCES OF ENDOMETRIOSIS  \n 9 \n \n \nIn this research, we adopted a critical realist perspective (Madill et al. 2000); we \nrecognise that it is possible to acquire an insight into people’s experiences through their \naccounts, but also that we as researchers have a role in constructing knowledge, so we were \nmindful to be reflexive throughout the process of data collection and analysis. For this reason, \nall authors engaged in reflexive analysis throughout the process of analysing the data, \nfollowing Willig (2013).  \nResults \nInductive thematic analysis revealed five themes, two of which had two sub-themes each,  \nevidenced across the participant group. In the quotes below, women are identified by \npseudonyms to retain anonymity, indicating age and length of time living with symptoms of \nendometriosis in parentheses to provide context.  \nTheme 1: A constant struggle with pain and fatigue \nWomen described their lives as a constant struggle with pain and fatigue. All women reported \nthat pain was the most disruptive aspect of endometriosis, affecting both work and social \nevents; long- term pain stopped them working, engaging in social events, exercising, doing \nhousework, and affected relationships with colleagues and family:  \nPain can stop me going to work or going out. Stops me from exercise enjoying my \nchildren.  Needing pain relief daily to get on with my day to day. Struggle to do \nhousework wash and dress myself. Maintain my relationship with husband and \nchildren. Affects my work and relationships with colleagues (Sandra, aged 38, 6 years).  \n \nPain was severe, and caused nausea and sometimes vomiting “pelvic pain, vomiting, \nsometimes fainting with pain” (Wanda, aged 56, 23 years). Deepa (aged 22, 8 years) \ndescribed the pain as “excruciating” and “non-stop” as well as ”a twisting, throbbing, \nstabbing, suffocating, nauseating, shocking and numbing pain” Pain was also described as \n“debilitating”, and felt primarily in the abdomen, back and legs “Every day is painful. Every \n\nEXPERIENCES OF ENDOMETRIOSIS  \n 10 \n \n \nstep is painful. Mostly the pain is in my abdomen but my back and legs also suffer” (Xena, \naged 27, 16 years). \n Fatigue was also cited as a major struggle for all participants.  Many women reported \nsignificant impacts on their ability to function normally, to the extent of sometimes being \nunable to leave the house for several days: \n Some days not even being able to get out of bed. Weeks in a month not having the \nenergy of suffering too much to leave the house or can't as need to be right by a toilet \nso you avoid any embarrassment of bleeding through your clothes.  Not having the \nstrength to cook or make dinner. Zero energy horrendous debilitating pain 3 weeks \nevery month sometimes more. (Catherine, aged 27, 6 years). \n \nTheme 2: The “battle” for an accurate diagnosis  \na) Delays in referral \nMost women did not receive an accurate diagnosis immediately on referral to health care \nproviders, and delays in diagnosis ranged from four months to 25 years. Many were frustrated \nby lack of support from health professionals who made them feel that they were \n“overreacting” (Beth, aged 36, 3 years), making a “fuss over nothing” (Yvonne, aged 32, 20 \nyears). All participants had experienced a “battle” to get diagnosed, and had felt frustrated \nand isolated as a result. Deepa (aged 22, 8 years) talks about feeling “isolation” and \n“hopelessness”, Nina (aged 26, 12 years) talks about feeling “so alone”, and Olena (aged 42, \n15 years) says “It has changed my life forever... and sadly not for the better... I feel so \nisolated and alone... I wish more people understood endometriosis”.  \nWomen had lost faith in health professionals, and felt “let down” by the health care system \nin general: \nOnly gone [sic] let down I feel by the system for there to be so little help and \nunderstanding for women who suffer with endo. It's so sad to know how many of us \nthere are and how little help there is (Xena, aged 27, 16 years). \n \n\nEXPERIENCES OF ENDOMETRIOSIS  \n 11 \n \n \nWomen felt that their symptoms were not taken seriously by health professionals, and that \nthey were not believed, even when they stressed the severity of their symptoms: \nFor me my GP not believing there was anything wrong with me for a long time was \nvery hard. I didn't feel listened to (Barbara, aged 33, 3.5 years). \n \nMany women had been told that they ‘just’ had painful periods, and it was only after extreme \npersistence and repeat medical trips over a number of years that they finally received the \ncorrect tests and a clear diagnosis: \nI was fourteen when I was told I just had 'painful periods'...every month I was having \nheavy bleeds and pain that shot up into my bottom that would make me freeze if sat or \nwalking.     This carried on until I was about 18 when I was finding sexual intercourse \nwith my partner back then incredibly painful. I ended up going to and from the doctors \nbut nobody seemed to know what was up until one particular doctor finally took me \nseriously and referred me to both the gynaecologists and another team to look at my \nbowel and intestines. It was when I was 23, nine years later that things finally started to \nmove with people looking into my condition. (Nina, aged 26, 12 years).   \n \nOnce diagnosed, many women were angry that their diagnosis had been delayed for so long. \nFor instance, Evelyn (aged 36, 22 years) says “These things make me feel angry, frustrated \nand disappointed” and Olena: \nIt's going to sound insane but first feeling was relief! That after 10 years I was not \n\"imagining\" this pain! Then fear, then anger as to why it took so long to get \ndiagnosed... (Olena, aged 42, 15 years). \n \nb) Poor support following diagnosis  \nMany women were also dissatisfied with how the final diagnosis of endometriosis was \ndelivered. Many reported being drowsy as they were often told when they were in recovery \nafter laparoscopy [keyhole surgery] making it difficult to formulate appropriate questions \nabout the condition. Also, the diagnosis was often unexpected, and they did not understand \nthe prognosis, leaving them feeling uninformed and vulnerable. At diagnosis, Jayne was \nrelieved that she now had “a name to my condition” and that she no longer had to “cope in \nsilence” but was dissatisfied with the long time between her diagnosis and follow-up \n\nEXPERIENCES OF ENDOMETRIOSIS  \n 12 \n \n \nappointment, and the fact that she was given her diagnosis when just out of surgery, so had \nno one with her, leaving her feeling vulnerable and alone; she described this as a “rushed, \nlonely and cold experience” (Jayne, aged 30, 15 years). Participants stressed the importance \nof GPs and other health professionals having a better understanding of endometriosis, and \npresented themselves as having had to become experts in their condition due to lack of \nsupport from health professionals, mainly using the internet to access information. For \ninstance, Nina had become sufficiently expert in her condition through her own research and \nprevious experience to know that she was not being treated optimally, and emphasised the \nneed for better education around endometriosis for health professionals: \nI really just feel it needs to be shared more. I have had doctors who are gyne registrars \ntry injecting me with things that I know I shouldn’t be injected with or that is the wrong \nmedication from just my own research or knowing my own medical procedure. [Nina, \naged 26, 12 years] \n \nTheme 3: Self-pacing to conserve energy  \na) Avoiding social events \nOne coping strategy was to try to conserve depleted energy levels though avoiding social \nevents. This had led to perceptions of social isolation, where women felt they had lost friends \nwho had become frustrated because of frequent cancellations and changes of plans. Women \nhad lied to friends about reasons for changed plans, not feeling able to tell them the true \nreason for fear of negative judgement:  \nI have lost a number of friendships because I have been unable to be consistent and stick \nto plans and also am not keen on going out so much because of the difficulties I then have \nwith added pain and fatigue so I avoid social situations a lot.  For example: one of my \nfriends is getting married and a hen do is being organised for 3 days and 2 nights. I have \nsaid I can't go for all of it because I can't get time off work on the Friday. This is a lie. I \ncan get time off but I have taken it on the Monday following the event because I know I \nwon't manage to go away for the weekend and do a full week at work afterwards (Xena, \naged 27, 16 years).  \n \n\nEXPERIENCES OF ENDOMETRIOSIS  \n 13 \n \n \nCatherine (aged 27, 6 years) said that avoiding social contact when unwell had led to \nproblems both in her marriage “affects my marriage”, and her friends “I have no friends now \nas couldn’t see them as too unwell now they don't bother trying”.  Felicia (aged 40, 20 years) \nhad felt isolated and as though she was dealing with her condition alone, even though her \nfriends tried to understand saying “My friends were understanding but it still felt like dealing \nwith such pain alone because they couldn't understand”.  \nb) Managing negative impacts on work \nWomen stressed the importance of pacing themselves to prioritise ability to work, and many \nreported that breaks from work such as weekends and holidays were spent recovering so as to \nbe able to function on working days. Xena (aged 27, 16 years) reported that “by the end of \nthe week I am in bits and have to rest the whole weekend to even feel partly prepared for the \nnext week”. Georgia also describes having to use her days off from work to recover her \nenergy:  \nOften have no energy, so on my days off, I often spend this recovering which is \ndifficult as I would like to be more active,  I often find it difficult to make plans as I am \nunsure as to how I will feel day to day. If I need to take painkillers or am in particularly \nbad pain it effects my concentration. I also find it difficult to eat sometimes or even go \nout when I have bowel and urinary symptoms (Georgia, aged 24, 4 years). \n \nMost women reported that they had to avoid work when symptoms were particularly bad, and \nsome had taken part-time work and additional leave because of their symptoms. Only two \n(Ursula and Hannah) said that impact on work had been limited. Ursula (aged 39, 25 years) \nsaid there had only been two or three occasions where she had taken time off due to \nsymptoms, and reported that she usually “takes anti-inflammatories” and “just gets on with \nthings”. Hannah had adjusted her working patterns to work around the limitations caused by \nher condition:  \nI rarely take time off work as I refuse to let the endometriosis take over so I put on my \nTENS machine or take pain killers or just cope with it. I am a midwife so working in that \n\nEXPERIENCES OF ENDOMETRIOSIS  \n 14 \n \n \nenvironment my managers are very supportive and understanding, it is generally so busy it \ntends to take my mind off the pain then I just crash at the end of the day. I have found I \nstruggle doing night shifts as it makes my symptoms worse so I don't do many night shifts. \nIf I have every had to take a day off it has been no problem (Hannah, aged 26, 13 years). \n \nTheme 4: Avoiding painkillers to retain alertness \nWomen struggled to stay alert when taking pain medication; this made them feel drowsy and \nnot sufficiently alert to function effectively. Hannah (aged 26, 13 years) said that when she \ntook her painkillers she was “so drowsy I cannot get out of bed or off the sofa”. Vera found \nthat painkillers affected alertness, and appetite:  \nI'm high or drowsy for most of the day and can't get enough sleep at night!    I can't \ndrink alcohol due to the painkillers.    I have to take time off work when the pain gets \ntoo bad.    I'm losing weight due to the painkillers and loss of appetite (Vera, aged 34, 4 \nyears). \n \nZita also reported struggling to concentrate after taking pain medication: \nI am a nurse and my work needs me to focus on patient needs this can be hard when I \nam in pain and I can't concentrate due to strong painkillers I take (Zita, age 37, 9 years).  \n \nWomen reported that they sometimes had to avoid work because they would not be \nsufficiently alert to work whilst taking pain medication, and had avoided taking pain \nmedication to avoid feeling drowsy at work: \nMy painkillers are strong and can’t drive or work when taking them.. so I try to not take \nthem.. even though I’m in pain (Isabelle, aged 25, 9 years) \n \nTheme 5: Hiding symptoms for fear of negative judgement  \nWomen concealed symptoms from friends, family and work colleagues, and reported feeling \nthat others did not perceive endometriosis to be a legitimate illness. Participants had \nexperienced lack of understanding and empathy from friends, family and colleagues, and \nwere concerned not to be labelled as a “hypochondriac” or as unable to handle “normal’ \n\nEXPERIENCES OF ENDOMETRIOSIS  \n 15 \n \n \nperiod pains. For instance, Zita (aged 37, 9 years) “not a lot of people understand, they just \nthink I can't handle period pains”, and Hannah:  \nI sometimes I think I'm being a hypochondriac and get very worried and anxious I hate the \nthought of people thinking of me as being ill or weak so I try to hide my symptoms as \nmuch as possible and keep a lot to myself (Hannah, aged 26, 13 years).     \n \nAs women expected negative reactions, they concealed symptoms from friends and \ncolleagues, and this put additional strain on women’s intimate relationships, leading to \nincreased feelings of guilt and isolation. For instance: \nAs time has gone on, I have managed to hide these symptoms and get on with things, \nbut it’s my husband who then has to put up with me on the weekends not able to \nfunction and in tears due to a feeling of being overwhelmed with everything, from \nworking, and socialising. And I find myself arguing with him for no apparent reason \n(Carol, aged 36, 9 years).   \n \nDiscussion \nSummary of themes \nWomen presented similar stories of struggling to cope with debilitating pain and fatigue, \nleaving them feeling vulnerable and isolated. Participants were frustrated by delayed \ndiagnosis and lack of clear information on prognosis, and management at initial diagnosis. \nPerceived lack of support from health professionals, friends and family left them trying to \ncontrol their energy levels through avoidance of social events, and sometimes being unable to \nwork due to pain and fatigue. Women reported hiding their symptoms from friends and \nfamily, lying about reasons for not attending social events for fear of being considered to be \n“overreacting” and not able to cope with period pains, and occasionally being unable to work \ndue to pain or side-effects of painkillers.  Pain medication caused problems with \nconcentration, fatigue and drowsiness, making them unable to work effectively or socialise.  \nLinks to previous work \n\nEXPERIENCES OF ENDOMETRIOSIS  \n 16 \n \n \nResults support previous quantitative and qualitative work that has suggested significant \nnegative impacts of pain and fatigue on  quality of life in women with endometriosis (e.g. \nCulley et al., 2013; DeGraaff et al., 2014; Facchin et al., 2015; Moradi et al., 2014; Whelan, \n2007; Young et al., 2015). Women’s accounts did not support work by Altinbas et al. (2015) \nwho suggested that pain caused by endometriosis does not affect quality of women’s lives; on \nthe contrary, women’s accounts showed that dealing with chronic pain was a constant \nstruggle, and pain and fatigue impacted on women’s lives on a day to day basis.  Results \nsupport data from reviews by Young et al. (2015) and Zarbo et al. (2018) which showed that \npain is the key negative experience reported by women with endometriosis. This pain and \nassociated fatigue impacted on all domains of life, including employment and social life, \nsupporting Facchin et al.’s (2015) suggestion that endometriosis with pelvic pain causes \nsignificant negative impacts on quality of life in women experiencing these symptoms. None \nof the women in the current study reported asymptomatic endometriosis; all women reported \nsevere, debilitating pain that impacted on the rest of their lives.  \nDelayed diagnosis (between four months and 25 years) was reported in the current \nstudy, supporting focus group work from Moradi et al. (2015), interviews by Denny (2004) \nand Facchin et al. (2017), and reviews by Culley et al. (2013), and Young et al. (2015), \nshowing that this “battle” for diagnosis is common across a range of geographical areas and \nhealth services. Moradi’s Australian focus group participants also used a “fight” metaphor. \nThis could be seen as a positive story around taking control and being active in determining \nthe eventual outcomes of being diagnosed, but for the women in the present study the “battle” \nwas linked with anger, frustration, and perceived betrayal by health professionals.   \nDelays, repeated misdiagnoses, and having their severe symptoms trivialised as “just \nperiod pains” meant that women had lost their faith in health professionals, and then \nsometimes ignored medical advice in favour of advice from support websites, or their own \n\nEXPERIENCES OF ENDOMETRIOSIS  \n 17 \n \n \nweighing up of costs and benefits relating to medical treatment. Women presented \nthemselves as experts in endometriosis, and more expert than the health professionals to \nwhom they were referred, supporting work from Seear (2009a) on development of patient \nexpertise in women with this condition. Women in the present study had developed expertise, \noften from a very low base where they had known very little about the condition at diagnosis, \nto become experts in their endometriosis, symptom management, gauging use of painkillers, \nand managing energy levels through pacing themselves so that they were able to achieve the \ngoals they needed to achieve, de-prioritising alternative goals. Although this prioritisation \nsometimes led to social isolation, it enabled them to function more-or-less normally at work \nwhile concealing their symptoms from colleagues, friends and family. Seear (2009a) notes \nthe costs of developing this expertise which she conceptualises as “third shift” work \nperformed in addition to paid and unpaid work.            \nSelf-pacing to conserve energy was one way that women attempted to take control \nover the challenges presented by their condition. Women reported careful restructuring of \ntheir work and social time to make their lives bearable. Results support suggestions from \nquantitative work by De Graaff et al. (2014) and qualitative work by Moradi et al. (2014) that \nendometriosis has a significant impact on women’s perceived ability to work (thirty-two \nwomen in the present study reported some impact, either caused by pain or impacts of \npainkillers), and relationships with friends, family and partners, and that long term pain and \nfatigue resulted in significantly reduced quality of life, including having to conserve energy \nby resting and avoiding social contact when in pain or under the influence of painkillers.  \nWomen reported concerns over taking painkillers, and sometimes chose not to take \nthese, supporting work by other authors who suggest that decisions not to take prescribed \nmedication may sometimes be the result of careful weighing up of costs (in this case, fatigue \nand inability to concentrate) against the benefits (pain relief), rather than forgetfulness \n\nEXPERIENCES OF ENDOMETRIOSIS  \n 18 \n \n \n(Donovan & Blake, 1992; Witry, LaFever, & Gu, 2017). Results support Seear’s (2009b) \nsuggestion, from interviews with 20 women with endometriosis, where apparent “non-\ncompliance” with medical advice was actually the result of what she calls “a form of rational \nexpertise” which she says is equivalent to medical expertise, and based on factors such as \navoiding potential risks associated with compliance. In the present study, as in Seear’s \n(2009b) interviews, women presented accounts where they demonstrated significant expertise \nin managing their condition. This self-knowledge and expertise, along with lack of faith in \nhealth professionals’ knowledge of endometriosis, meant that participants carefully weighed \nup the benefits and costs of taking painkillers, and sometimes decided to forgo the pain relief \nin favour of retaining the alertness required to work or fulfil other responsibilities. Although \nwomen may be willing to discuss this apparent “non-compliance” in anonymous on-line \nquestionnaires, they may be reticent about having similar discussions with health care \nproviders, because of already fraught relationships between participants and health care \nprofessionals, fears of additional stigma, and concerns about being judged as not doing \nenough to help themselves. \nWomen hid symptoms from friends, family and colleagues, and sometimes did not \nfeel able to be honest with friends and family about their health, often minimising and \nconcealing their symptoms, and sometimes lying about reasons for failing to attend social \nevents. This was a conscious strategy for exerting some control within a context where pain \nwas sometimes uncontrollable, “nonstop”, and “excruciating”, but where they did not feel \nconfident that those close to them would understand fully the extent of their pain and their \nneed to pace themselves. These findings are new, and further work could investigate these \nissues further.  \nStrengths and Limitations \n\nEXPERIENCES OF ENDOMETRIOSIS  \n 19 \n \n \nStrengths of this study are the large number of women whose opinions we accessed, and the \ngood degree of information from each woman. Participants were detailed in their responses \nand shared a lot of information, possibly related to the relative anonymity of the online \nmethodology which seemed to enhance freedom of expression, supporting Hewson (2017). \nThere were also limitations inherent in our work. Women were mostly White, so we do not \nknow how far their responses would generalise to other women with endometriosis. Also, \nthey were all accessed through one endometriosis website which may have restricted scope of \nexperiences expressed here (De Graaff et al., 2015; Moradi et al., 2014); in particular, women \naccessing an endometriosis support website may have more severe symptoms than other \nwomen with endometriosis, and may be more proactive in their healthcare. Further research \ncould examine this through selection of a wider group of women.  \nReflexive Analysis \nAs researchers, we have tried to present women’s accounts fairly, although we acknowledge \nthat we were engaged emotionally in these women’s accounts. The first author is a health \npsychologist with experience of talking to women about their bodies and health, but no direct \nexperience of endometriosis. The second author is a critical psychologist and has a personal \ndiagnosis of endometriosis and research interests in women’s psychology. The third author is \na social psychologist with an interest in women’s health, but no direct experience of \nendometriosis. The analysis we have produced hopefully benefits from these different \nperspectives on endometriosis. \nKey Implications for Health Professionals \nThe primary implication for health professionals is the importance of early diagnosis. \nSupporting Denny (2004), Culley et al. (2013), Moradi et al. (2014), Whelan (2007) and \nYoung et al. (2015), all participants had experienced significant time between experiencing  \nsymptoms and getting a diagnosis of endometriosis which had led them to feel \n\nEXPERIENCES OF ENDOMETRIOSIS  \n 20 \n \n \nmisunderstood, not listened to, and as though their experiences and reports of severe pain \nwere not taken seriously. Women also felt that initial diagnosis should be handled more \nsensitively. This diagnosis often came as a shock and left them feeling unprepared and \nvulnerable, particularly as they were often given the diagnosis when they were in recovery \nafter laparoscopy surgery. Women may have found it helpful to have a family member of \nfriend with them to listen to any advice given at diagnosis. Women who had received leaflets \non endometriosis to take away with them directly after diagnosis had found these outdated \nand unhelpful and would prefer to have had an earlier follow-up appointment to get direct, \ntailored advice from a knowledgeable healthcare professional. Women would also have found \nit helpful to be informed about support groups at diagnosis.  \nThe psychological implications of endometriosis may include feelings of isolation, the \nneed to conserve energy, and guilt at letting people down by being unable to function \nadequately in social and work situations. These feelings need to be acknowledged and \naddressed along with a discussion of ways to control pain and other physical symptoms of \nendometriosis. Also, non-adherence to pain medication may be an active choice for some \nwomen, in order to avoid feeling too “drowsy” to concentrate at work or social events, and \nthere also needs to be greater awareness on behalf of health care professionals of the negative \nimpact of medication side effects on daily lives of women with endometriosis. Alternatives \nand adjuncts such as cognitive behavioural therapy and relaxation techniques should be \ndiscussed as soon as possible after diagnosis so that women are aware of the full range of \nalternatives and adjuncts to medication.  \nConclusions \nWomen who completed our open-ended online questionnaires shared similar experiences of \nendometriosis, and wrote about the many challenges they faced in trying to maintain an \nappearance of normality in their personal and working lives whilst dealing with long-term, \n\nEXPERIENCES OF ENDOMETRIOSIS  \n 21 \n \n \noften very severe, pain and fatigue. Earlier diagnosis may have reduced frustration and \nresultant isolation and feelings of hopelessness, and it is crucial that GPs and other health \nprofessionals are trained to be able to differentiate endometriosis from other kinds of pain, \nand also to take women’s symptoms seriously at referral. Health care professionals working \nwith women with endometriosis should also be aware that women may feel that they have to \ndevelop their own coping strategies, due to perceptions of being misunderstood and feeling \nisolated. These coping strategies may involve avoiding taking painkillers to enable them to \nstay alert when necessary, self-pacing to conserve energy, avoiding social events, changing \nwork patterns, and hiding symptoms from colleagues, friends and family. It is therefore \nimportant that health professionals discuss the full range of possibilities for treatment, in \naddition to painkillers, as well as possible strategies for communicating honestly with friends \nand family about their condition, when designing treatment programmes for women with \nendometriosis.     \n\nEXPERIENCES OF ENDOMETRIOSIS  \n 22 \n \n \nReferences \nAltinbas, S.K., Tekin, Y.B., Dilbaz, B. & Dilbaz, S. (2015). 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DOI: 10.1136/jfprhc-2013-100853 \nZarbo, C., Brugnera, A., Frigerio, L., Malandrino, C., Rabboni, M., Bondi, E., & Compare, \nA. (2018). Behavioral, cognitive, and emotional coping strategies of women with \nendometriosis: a critical narrative review. Archives of Women’s Mental Health, 21 \n(1), 1-13. DOI: 10.1007/s00737-017-0779-9 \n\nEXPERIENCES OF ENDOMETRIOSIS  \n 26 \n \n \nAppendix 1 \nOpen-ended Questionnaire  \nPlease answer the following questions in as much detail as you would like. You do not have \nto answer any questions that might upset you; please tick the ‘prefer not to answer box’ next \nto any such questions. Please think about your thoughts, your feelings and your body when \nanswering the questions. \n1. Please describe in your own words when and how you found out that you had \nendometriosis. \n2. How long had you had symptoms by the time you were diagnosed? \n3. Can you describe your thoughts, feelings and emotions when you received the \ndiagnosis of endometriosis? \n4. Please describe in your own words the physical, psychological and emotional \nsymptoms that you experience. \n5. What effect does having endometriosis have on your day to day life? Please give \nexamples. \n6. Has the condition had any impact on your relationships with partners? Please describe \nany impacts or effects (both positive and negative). \n7. Has it impacted the relationships with your family in any way? Please describe any \nimpacts or effects (both positive and negative). \n8. Has having endometriosis had any impact on your relationships with friends? Please \ndescribe any impacts or effects (both positive and negative). \n9. Has having endometriosis impacted on your social life, and if so how? Please give \nexamples. \n\nEXPERIENCES OF ENDOMETRIOSIS  \n 27 \n \n \n10. Would you say the condition has impacted on your work? If yes, please say how, if no \nplease explain why. \n11. What are the most significant effects for you of living with endometriosis? \n12. Has living with endometriosis had any effect on how you see or perceive yourself and \nyour body? If yes, please say how, if no please explain why. \n13. Is there anything else you would like to tell us about your experiences of having \nendometriosis? Please use the space below to say as much as you like.","source_license":"CC0","license_restricted":false}