{"paper_id":"614aa236-f6ef-4531-a802-f2241e79f458","body_text":"Barriers to a Timely Diagnosis of Endometriosis: A \nQualitative Systematic Review.\nDAVENPORT, Sophie, SMITH, Diane and GREEN, Dan J \n<http://orcid.org/0000-0003-1934-6725>\nAvailable from Sheffield Hallam University Research Archive (SHURA) at:\nhttps://shura.shu.ac.uk/32378/\nThis document is the Accepted Version [AM]\nCitation:\nDAVENPORT, Sophie, SMITH, Diane and GREEN, Dan J (2023). Barriers to a \nTimely Diagnosis of Endometriosis: A Qualitative Systematic Review. Obstetrics and \ngynecology, 142 (3), 571-583. [Article] \nCopyright and re-use policy\nSee http://shura.shu.ac.uk/information.html\nSheffield Hallam University Research Archive\nhttp://shura.shu.ac.uk\n\n 1  \nBarriers to a Timely Diagnosis of Endometriosis: A Systematic 1 \nReview and Qualitative Synthesis  2 \n 3 \n 4 \nPRECIS  5 \nDelays and barriers to an endometriosis diagnosis is multifactorial; this qualitative systematic review 6 \nhighlighted themes of individual, interpersonal, healthcare and knowledge factors with the 7 \ncondition. 8 \n 9 \n 10 \n 11 \n 12 \n 13 \n 14 \n 15 \n 16 \n 17 \n 18 \n 19 \n 20 \n 21 \n 22 \n\n 2  \nABSTRACT 23 \nOBJECTIVE 24 \nThe diagnosis of endometriosis, a common gynaecological condition, is characterised by delays of up 25 \nto eleven years. During this time, women may experience persistent symptoms that affect their 26 \nquality of life, productivity, and relationships, and the disease may progress. It is therefore a priority 27 \nfor us to understand the factors that contribute towards this delay so that the diagnostic pathway 28 \ncan be improved. We sought to examine the barriers to the timely diagnosis of endometriosis, from 29 \nthe perspective of affected women and healthcare professionals, using a qualitative evidence 30 \nsynthesis. 31 \n 32 \nDATA SOURCES 33 \nWe searched MEDLINE, PsycINFO and CINAHL using combinations of the synonyms of  34 \n“endometriosis”, “diagnosis”, and “qualitative research”. The search was restricted to English-35 \nlanguage articles from database creation until May 2022. 36 \n 37 \nMETHODS OF STUDY SELECTION 38 \nThe initial search yielded 899 articles. Studies were included if they explored the experiences or 39 \nviews of affected women and/or healthcare professionals on the diagnosis of endometriosis, used 40 \nqualitative methods for data collection and data analysis. Risk of bias was assessed using the CASP 41 \nchecklist.  42 \n 43 \nTABULATION, INTEGRATION, AND RESULTS 44 \n\n 3  \nThirty seven articles were considered for full review, with thirteen eligible papers, identified for 45 \ninclusion. Thematic synthesis was used to identify four key themes; a) individual factors (n=6), b) 46 \ninterpersonal influences (n=6), c) health system factors (n=13), and d) factors specific to 47 \nendometriosis (n=8). These encompassed twelve sub-themes which represented barriers to the 48 \ndiagnosis of endometriosis;  a) difficulty establishing pathological symptoms from normal 49 \nmenstruation, b) menstrual stigma and the normalisation of menstrual pain, c) poor attitudes and 50 \nlack of training for healthcare professionals, delayed referrals to specialist services, poor explanation 51 \nof oral contraceptive pill use in the diagnostic process, and d) variability in presenting symptoms, 52 \noverlap with other conditions, lack of a non-invasive method of diagnosis, and concerns about the 53 \nvalue of a diagnosis. 54 \n 55 \nCONCLUSION 56 \nThis review identified barriers to the timely diagnosis of endometriosis from the perspective of 57 \naffected individuals and healthcare professionals. It highlights areas for improvement along the 58 \ndiagnostic pathway, which may guide future strategies to reduce the delay. Further research to 59 \nidentify the facilitators to diagnosis and would be beneficial. 60 \n 61 \n 62 \n 63 \n 64 \n 65 \n      66 \n 67 \n\n 4  \nINTRODUCTION  68 \nEndometriosis is an inflammatory condition affecting women, in which endometrial tissue (the lining 69 \nof the uterus) is found at sites outside of the uterus1. Approximately 10% of women of reproductive 70 \nage are affected (190 million women worldwide)2,3. The symptoms associated with endometriosis 71 \nexert a substantial burden on the lives of individuals and on society as a whole 4. Endometriosis is 72 \nassociated with reduced health-related quality of life (HR-QOL), reduced mental wellbeing, adverse 73 \neffects on intimate relationships, and reduced social activity4-6. It is also associated with reduced 74 \nproductivity at work or school4, which contributes towards a significant loss of income5. 75 \nEndometriosis is estimated to cost the United Kingdom (UK) economy over £8.2 billion a year due to 76 \nlost productivity and healthcare costs, which is comparable to other chronic conditions, such as 77 \ndiabetes mellitus and rheumatoid arthritis 7. 78 \n 79 \n The burden of endometriosis is prolonged by a well-established diagnostic delay; there is an average 80 \nof between four and eleven years from the onset of the first symptom to receiving a  diagnosis5. This 81 \ndelay is seen worldwide, even in countries with access to universal healthcare 5.   82 \nThere has been limited research to ascertain the reasons for the diagnostic delay in endometriosis. 83 \nThis systematic review aimed to explore the barriers to the timely diagnosis of endometriosis from 84 \nthe perspective of affected women and the healthcare professionals involved in the diagnosis.  85 \n 86 \nSOURCES 87 \nA scoping search was undertaken to provide an overview of the literature and identify relevant 88 \nsearch terms for a subsequent systematic review. The SPIDER framework8 was used to identify key 89 \nconcepts, including “endometriosis”, “diagnosis” and “qualitative research”, which provided free-90 \ntext terms for initial searches of MEDLINE, The Web of Science, and Google Scholar. The first 100 91 \n\n 5  \nresults from each database were screened. The titles, abstracts, and index terms of relevant studies 92 \nwere reviewed, and a list of additional search terms was developed (Supplementary Tables 1-2).  93 \nThe Cochrane Library and PROSPERO were searched to identify systematic reviews on the topic, 94 \nusing the key terms “endometriosis” and “diagnosis” to ensure this review did not repeat any 95 \npreviously published or ongoing reviews.  96 \nThe research question was divided into key concepts based on the SPIDER framework 8. 97 \nCombinations of the free-text terms and Medical Subject Headings (MeSH) that had been identified 98 \nby the scoping search were then trialled for each concept until an acceptable balance between 99 \nsensitivity and specificity was reached.   100 \nQualitative search filters, designed by the University of Texas were also added to the final search 101 \nstrategy9. Filters to further narrow the search, for example, based on the characteristics of the study 102 \npopulation, date of publication, or study design were not used. 103 \nThree databases were used to identify relevant studies: 104 \nMEDLINE via Ovid (1946-May 2022) 105 \nPsycINFO via Ovid (1887- May 2022) 106 \nThe Cumulative Index to Nursing and Allied Health Literature (CINAHL) via EBSCO (1937- May 2022).  107 \nSearches were initially carried out in July 2021 and then repeated in May 2022; all identified records 108 \nwere exported to Rayyan10. A supplementary search was also performed using the CLUSTER 109 \n(Citations, Lead Authors, Unpublished materials, Scholar searches, Theories, Early examples, and 110 \nRelated Projects)11 procedure.  111 \nFollowing the identification of key “pearl” papers, forward citation searches were carried out using 112 \nthe Web of Science and the ‘Related Article’ functions on MEDLINE and CINHAL. The reference lists 113 \nof included studies and the name of the lead author were also searched. Authors were not 114 \n\n 6  \ncontacted directly, but efforts to identify their work included searching their publications lists and 115 \ninstitutional repositories. Finally, all volumes of the ‘British Journal of Obstetrics and Gynaecology’ 116 \nand the ‘Journal of Endometriosis and Pelvic Pain Disorders’ published between January 2011-May 117 \n2022 were searched for relevant articles using the key terms “endometriosis” and “diagnosis”.   118 \nStudies were selected using pre-determined inclusion and exclusion criteria. To be included in the 119 \nreview, the study population must have included women with a diagnosis of endometriosis, and/or 120 \nhealthcare professionals (regardless of speciality) that had experience of diagnosing the condition. 121 \nThe ESHRE guidelines12 suggest a two-step approach in which a diagnosis can be made clinically 122 \n(based on the history, pelvic examination, and ultrasound imaging) before a trial of treatment, or by 123 \ndirect visualisation during laparoscopic surgery13. Accordingly, laparoscopy is usually offered only to 124 \npatients with negative imaging results or where empirical treatment was unsuccessful or 125 \ninappropriate12. We therefore included patients that had been diagnosed in either way. This 126 \ndefinition was used successfully in a previous Cochrane review and ensured that the review captured 127 \npatients’ experiences of both methods14. 128 \n 129 \nThere were no limitations placed on the age of the participants, the severity of the endometriosis, 130 \nthe period of time since diagnosis, or the sample size. As a range of healthcare professionals may be 131 \ninvolved in the diagnosis, studies involving any specialist with experience of the condition were 132 \nincluded. This review was limited to studies available in the English language, and published studies, 133 \nbut there was no limit placed on the date of publication for searches via OVID.   134 \n 135 \nAs this study aimed to explore participants’ experiences and reflections on the existing factors 136 \ncontributing to the delayed diagnosis of endometriosis, only non-interventional, qualitative studies 137 \nfocusing on the participants’ views on the diagnostic pathway were included. Studies focusing on the 138 \n\n 7  \ngeneral experience of having the condition, treatment, second-hand accounts, or on a specific 139 \nintervention were therefore excluded.   140 \nQualitative studies were sought as, by design, these approaches delve deeper into the experiences 141 \nof a patients’ condition; something quantitative surveys for example, would struggle to achieve. 142 \nIncluded studies must therefore have used an appropriate qualitative method for data collection and 143 \ndata analysis such as focus groups or interviews analysed using thematic analysis, framework 144 \nanalysis, content analysis or constant comparison. Data was also extracted from the qualitative 145 \nelements of relevant mixed-methods studies if there was adequate information to do so.  146 \n 147 \nSTUDY SELECTION 148 \nRecords were filtered by a single reviewer (lead author). A title search was undertaken followed by a 149 \nreview of the abstracts and those which did not meet the eligibility criteria were excluded. The full 150 \ntexts of the remaining studies were retrieved using the research centre online search tool or by 151 \ncontacting the research centre library, and those that met the inclusion criteria were chosen for the 152 \ndata synthesis.  153 \nAll decisions were recorded on Rayyan10 and any uncertainties about the eligibility of a study were 154 \ndiscussed with the corresponding author. Multiple reports from the same study were treated as a 155 \nsingle study, with reference made to all publications.  156 \nRelevant studies were appraised using the Critical Appraisal Skills Programme (CASP) checklist for 157 \nqualitative research15 but were included in the final review, regardless of methodological quality. 158 \nThe CASP checklists are freely available, and easy to use materials to aid health professionals to 159 \ncritique journal articles by highlighting the key areas to focus; different checklists are available for 160 \nvarying study designs. Both Cochrane and CASP themselves recommend against rejecting studies 161 \n\n 8  \nbased on an arbitrary cut-off16 as including studies of lower quality may strengthen the evidence for 162 \nfindings in the synthesis17 p.33. 163 \n Standardised data extraction forms were used to provide consistency, reduce the risk of bias, and 164 \nimprove the validity of the data collection process17.The author, year of publication, country, setting, 165 \nresearch question and aim, study design, the participant characteristics, the method of data 166 \ncollection, and the method of data analysis were recorded. Quotes from study participants (‘first 167 \norder constructs’), along with existing author interpretations (‘second-order constructs’) were then 168 \ncollected. Thematic synthesis was used to analyse the findings of the included papers18. We 169 \nacknowledged the positionality of the lead author, a White female working as a junior doctor in the 170 \nUK, and reflected on how we could minimise its influence on the interpretation of results. 171 \nGRADE-CERQual19 was then used to evaluate the findings of this review and was recorded in a 172 \nGRADE Evidence Profile. This is an approach to judge how much confidence to hold in qualitative 173 \nevidence synthesis, assessing four key areas of methodological limitations, coherence, adequacy, 174 \nand relevance. A GRADE Evidence Profile is the name ascribed to the summary presentation of key 175 \ninformation from the articles in the synthesis. Due to the original nature of this project (a Masters 176 \ndissertation) the review protocol was not pre-registered. 177 \n 178 \nRESULTS 179 \n995 records were identified, including 936 records from the electronic databases and 59 potentially 180 \nrelevant records from the supplementary searches. Following the removal of duplicates, 899 unique 181 \npapers remained. 826 papers were excluded during the title review and 36 following the abstract 182 \nreview. A further 24 papers were excluded following the full-text review: nine focused on an aspect 183 \nof endometriosis other than the diagnosis, six focused on a disease other than endometriosis, four 184 \ndid not have an appropriate qualitative research design, three did not explore the diagnosis from the 185 \n\n 9  \nperspective of affected women or healthcare professionals, and one was a conference abstract of an 186 \nincluded study. In addition, one paper20 could not be retrieved, despite assistance from the library 187 \nwithin the research centre and attempted contact with the author.  188 \n In total, 13 papers, reporting on 12 studies, were included in the qualitative synthesis (Figure 1); the 189 \ntitles and characteristics of the included papers are provided in Table 1. All were published as journal 190 \narticles between 2003 and 2022. Of these, five were conducted in the United Kingdom (UK)21-25, 191 \nthree in Australia26-29, two in the United States of America (USA)30,31, one in Sweden32, and one in the 192 \nNetherlands33. All studies were therefore carried out in high-income countries, with the majority 193 \nhaving universal health coverage. 194 \nTen of the studies used a qualitative research design21-25, 27-29,31-33 and two used mixed methods with 195 \nadequate information provided to extract the qualitative data 26,30. Three studies used a narrative 196 \napproach21,24,27,28, two used grounded theory22,25, and one used phenomenology29. The remaining 197 \nstudies did not specify their methodological background. 198 \nThe samples of nine studies21-24,26-29,31,32 were made up exclusively of women with endometriosis and 199 \none30 included women with endometriosis as part of their larger sample. The sample sizes ranged 200 \nfrom 9 to 222, with data being collected from 476 participants in total. The age of participants 201 \nranged from 16-78 years, although one study did not report the age of their participants21. Few 202 \npapers reported further demographic information; those that did described a predominantly white, 203 \nworking class population27/28,31. In most of the studies, participants were recruited using convenience 204 \nsampling methods from specialist endometriosis centres and non-profit organisations, with snowball 205 \nsampling used as an additional method in two studies21,30.  206 \nSix of the studies only included participants who had received a laparoscopic diagnosis of 207 \nendometriosis21-24,29,31, whereas three included those who had received a clinical diagnosis26-28. The 208 \nseverity of endometriosis was only discussed in one paper 22, which stated 58.4% of the women had 209 \nmild endometriosis, 33.3% had moderate to severe endometriosis, and 8.3% had deep infiltrating 210 \n\n 10  \nendometriosis. Most participants had experienced a delay from the onset of symptoms to diagnosis, 211 \nwhich ranged from an average of 3.8 to 8.1 years. 212 \nThe samples of the remaining two studies were made up exclusively of healthcare professionals that 213 \neither had experience of diagnosing endometriosis25,33, or were expected to diagnose endometriosis 214 \nas part of their primary job role25. Zale30 also included healthcare professionals in their sample in 215 \naddition to patients. The number of healthcare professionals included in these samples ranged from 216 \n4-43, with data collected from 89 professionals in total; 85 general practitioners, two physicians that 217 \nhad specialised in obstetrics and gynaecology (neither specialising in endometriosis), one radiologist, 218 \nand one internal medicine physician. Participants were recruited using convenience methods from 219 \nphysician registers and from professional events. The number of years of experience in diagnosing 220 \nendometriosis ranged from 0 (doctors in training) to >20 years.  221 \nThe phenomenon of interest in all studies was the diagnosis of endometriosis. Four studies gathered 222 \ninformation on affected women’s experiences of receiving a diagnosis of endometriosis 223 \nspecifically23,24,26,32, five focused on women’s experiences of endometriosis in general, with the 224 \ndiagnosis as a significant topic 21,22,27-29,31, and two aimed to explore healthcare professionals’ 225 \nexperiences of diagnosing and managing endometriosis 25,33. Zale (2020)30 explored both patient’s 226 \nand physician’s experiences.  227 \nThe primary outcome of all studies was the experiences, views, beliefs, or attitudes of the affected 228 \nwomen and/or the healthcare professionals. Seven studies gathered this information using semi-229 \nstructured interviews21-25,30,32, one used unstructured interviews27/28, three used focus groups26,29,33 230 \nand one used an open-ended questionnaire31. All interviews and focus groups were audio-recorded 231 \nand were transcribed for analysis. Eight of the studies used inductive thematic analysis21,23-24,26-28,30,31 232 \nwith grounded theory 22, the Modified Stevick-Colaizii-Keen method32, content analysis33, and 233 \nframework analysis25 all used in one study each. The methodological quality of the studies was 234 \ngenerally very good, including one22 which was of the best quality according to CASP15 (Table 2). 235 \n\n 11  \nThematic analysis of the studies highlighted multiple factors, that act as barriers to the timely 236 \ndiagnosis of endometriosis. These were categorised into four overarching analytical themes focusing 237 \non a) individual factors, b) interpersonal influences, c) health system factors, and d) factors specific 238 \nto our knowledge of endometriosis. Twelve sub-themes are presented within these categories. 239 \nVerbatim quotations, taken directly from the primary studies, are used throughout to illustrate the 240 \nthemes and to provide evidence for the reviewer’s interpretations 34. 241 \nIndividual factors 242 \nIndividual factors contributed to the prolonged period between the onset of symptoms and the 243 \nseeking of medical advice, which accounted for up to half of the diagnostic delay27. This concept was 244 \nexplored in six of the studies included in this review22,23,27-29,32, resulting in the identification of two 245 \nsub-themes. 246 \nAs reported in all six studies, affected individuals struggled to distinguish their pathological 247 \nsymptoms from the normal experience of menstruation. Having had painful periods from menarche, 248 \nthey often assumed that their symptoms were within the spectrum of normal and something that all 249 \nwomen endured27. This assumption remained even when symptoms were severe and disruptive, 250 \nwith many  individuals reporting that they thought they were ‘unlucky’ to have ‘problematic periods’ 251 \nrather than unwell. 252 \nThis was reinforced by their relatives. Participants in Markovic28 explained that they drew primarily 253 \non the experiences of their mothers and grandmothers to learn about menstruation, and so, if they 254 \ntoo had gynaecological problems, they learned to regard severe period pain as normal. This is 255 \nparticularly relevant given that endometriosis has a genetic component35. In these situations, 256 \naffected women were unlikely to recognise their own symptoms as atypical or in need of medical 257 \nattention. 258 \n 259 \n\n 12  \n 260 \n 261 \nThese beliefs about the normality of the symptoms of endometriosis often delayed help-seeking 262 \nuntil a “circuit breaker” event forced the affected women to reconstruct their experience as 263 \npathological27. For example, participants reported that they only sought medical advice when their 264 \nsymptoms began to affect their ability to perform everyday tasks, when a significant other 265 \nencouraged them to seek help, or when they failed to conceive27.    266 \n  267 \n 268 \nAnother common theme was the use of self-care techniques to manage symptoms. Participants in 269 \nJones22, Ballard23 and Manderson27 reported that they developed a wide range of coping strategies, 270 \nincluding spending time in bed, using hot water bottles and heating pads, withdrawing from social 271 \nactivities, and taking analgesia, which enabled them to mask their symptoms for some time. They 272 \ndelayed seeking medical advice until self-management became unfeasible or an acute problem 273 \narose.  274 \nInterpersonal Influences 275 \nFindings related to interpersonal factors were collated into two sub- themes; a) menstrual stigma 276 \nand b) the societal normalisation of menstrual pain. These concepts emerged from six of the studies 277 \nand discourage individuals from seeking advice for their symptoms22,23,25,29,30,33.  278 \nFirstly, affected individuals reported that they felt that talking about their menstrual problems was  279 \nsocially unacceptable, seeing it as potentially embarrassing or shameful22,23,29. They often concealed 280 \ntheir symptoms from others, which exacerbated the difficulties they had in differentiating normal 281 \nfrom pathological menstruation. As menstruation was rarely discussed, they missed out on the 282 \nopportunity to gain comparative evidence to suggest that their experience was abnormal. 283 \n“I had witnessed my mum with so many problems in her life, she used to get a shot of \npethidine every month, so when I started to get period pain in teenage years, I just \nthought that was fairly normal.” [Patient] (Manderson)27. \n \n“I remember one day someone [at school] saying, ‘You shouldn’t have any pain, that’s \nnot normal’”. [Patient] (Manderson)27.  \n \n\n 13  \nIf they did discuss with peers, the social narrative around painful periods being a normal part of 284 \nwomanhood was  influential in deterring women from seeking help 22,24. Participants reported that 285 \ntheir symptoms were often dismissed by their relatives, peers, and colleagues as “just period pain”. 286 \nTheir symptoms were often trivialised, and they were made to feel that there was a problem with 287 \nhow they coped with pain, rather than an underlying disease. Interestingly, this phenomenon was 288 \nreported in studies as recent as 2021, suggesting that this persists 3,31,32,33. 289 \n 290 \n 291 \nFrom the perspective of healthcare professionals, the stigma around “women’s issues” and sense 292 \nthat discussion could be embarrassing and uncomfortable made it difficult to gather enough 293 \ninformation to make a diagnosis 25.  Patients rarely disclosed information about their symptoms in 294 \nthe initial consultation, meaning that healthcare professionals often had to see a patient multiple 295 \ntimes before they could get an accurate impression of their experience.  296 \n 297 \n 298 \n 299 \n 300 \nHealth system factors and factors specific to endometriosis 301 \nDelays to diagnosis once the  individual had sought medical help for their symptoms were a 302 \nrecurring theme in all 13 studies.21-33. Barriers relating to the health system and endometriosis itself 303 \nwere grouped into sub-themes which have been explored from the view of both patients and 304 \nhealthcare professionals. They have been discussed together to allow deeper analysis of the way in 305 \nwhich the factors interact. 306 \n“They might not want to tell you the first time they meet you that they’re actually \nhaving really painful sex, and they might be quite worried about that. Or they might \nnot want to open up to you about that, but maybe once you’ve seen them once or \ntwice, they might say” [GP] (Dixon)25. \n \n \n“I am sure people thought she is making it up again. Oh god, everybody has a time of \nthe month, why can’t she just snap out of it” [Patient] (Jones)22. \n\n 14  \nFirstly, participants  described a sense of being dismissed or treated with scepticism by their general 307 \npractitioner (GP) when they sought help21,23,24,27,29-32. Indeed, most participants in Ballard23 cited their 308 \ndoctors’ disbelief of the severity of their symptoms as the “least helpful aspect of their treatment”. 309 \nPatients felt that their symptoms were trivialised as “just period pain”, which were not worthy of 310 \nmedical attention23. Some women, particularly in Grundstrom32, perceived healthcare professionals 311 \nas distant and nonchalant, getting the impression that they were not interested in hearing about 312 \n‘women’s problems’. 313 \n 314 \n 315 \n 316 \n When  they continued to seek help after the initial dismissal, participants often reported that they 317 \nwere accused of exaggerating or “imagining” their symptoms 21-24,28,30,31. The impact of this, alongside 318 \nthe women’s lack of knowledge about ‘normal’ menstruation, led to some questioning their own 319 \nexperiences, with participants in Ballard23 stating they felt they were “going mad”. This theme was 320 \nrepeated, with many affected women discouraged from seeking further help as they felt they must 321 \nbe wasting the doctor’s time. 322 \n 323 \n 324 \n 325 \nAnother issue was that patients perceived healthcare professionals to have poor knowledge of 326 \nendometriosis.  Participants expressed frustration that their doctors appeared to lack even basic 327 \nawareness of the condition31,32 as “there is an expectation that clinicians have expertise in the 328 \ndiseases that they treat”30. This was seen as a major barrier to diagnosis, as the healthcare 329 \n“He [the GP] brushes it off and says its period pain, and you can get on with it. That’s \nhis entire attitude, have some ibuprofen and get on with it” [Patient] (Denny)24. \n“It’s a shame women have to endure years of physicians making light of their pain and \nbeing told ‘it’s part of being a woman’” [Patient] (Mikesell)31.  \n“I was experiencing a lot of pain on penetration…I went to the doctors and they did an \ninternal and said ‘Look, everything is perfectly normal’ and suggested that it might be \na psychological problem, and I might just be anxious” [Patient] (Denny)21 \n \n\n 15  \nprofessional must have known enough about the condition to ‘think of it in the first place’ and to 330 \nmake an appropriate referral30.  331 \n 332 \n 333 \nThis was also recognised by the healthcare professionals themselves 25,30,33. GPs in Van der Zanden33 334 \nreported that their knowledge of endometriosis was limited, admitting they found it difficult to 335 \ndifferentiate between normal menstruation and pathological conditions like endometriosis. Without 336 \nadequate knowledge of the disease, the doctors struggled to identify the ‘right’ questions to ask and 337 \ncould not perform an appropriate examination. 338 \n 339 \n 340 \nThis was attributed to a lack of clinical training and experience, with  physicians stating that 341 \nendometriosis was not emphasised or covered comprehensively during their medical training25,30,33. 342 \nMultiple GPs and non-specialist gynaecologists also reported that they did not have access to clear 343 \nguidelines for diagnosing endometriosis,30,33.  They suggested that clinical guidelines, developed by a 344 \nmultidisciplinary team would be useful to advise them in which therapies they can start themselves, 345 \nwhen referral is advised, and what actions may be taken in secondary care 30,33. However, this was 346 \nnot identified as a problem in Dixon 25, a study carried out with GPs in England. This suggests that this 347 \nproblem is country-specific, with guidelines varying in quality and accessibility. 348 \nThe variability in the symptoms of endometriosis was also identified as a barrier to diagnosis from 349 \nthe perspective of healthcare professionals25,30,33. The symptoms of endometriosis can be vague, 350 \nranging from chronic pelvic pain, to dyspareunia, bowel problems, urinary symptoms, and chronic 351 \nfatigue36. This made it difficult for healthcare professionals to differentiate it from other 352 \ngynaecological and gastrointestinal problems. Particularly, endometriosis was often masked by a 353 \n“My doctor did not have a great deal of knowledge in that area. With two of my \ndoctors, I had to explain to them what endometriosis is and how to treat it. So I can’t \nexactly go to them and ask for help with my treatment” [Patient] (Moradi)29.  \n \n“You have to think of it in the first place. You have to know the condition before it even \noccurs to you. And if you don’t think of it, you will not find the information you need” \n[GP] (Van der Zanden)33.  \n \n\n 16  \ndiagnosis of irritable bowel syndrome (IBS). These conditions may present with similar symptoms, 354 \nand indeed, often co-occur in the same individual, making them difficult to distinguish.  355 \nFrom the perspective of professionals, misdiagnosis was therefore an inevitable part of the process. 356 \nGPs are trained to work through a clinical hierarchy, where ‘red flags’ indicating serious disease must 357 \nbe excluded before other diagnoses (including endometriosis) can be considered. As the symptoms 358 \nof endometriosis overlap with other conditions, and because endometriosis cannot be reliably 359 \ndiagnosed in primary care, the tests offered were predominantly used to rule out other causes of the 360 \nsymptoms. Once the life-threatening conditions were ruled out, a referral for specialist 361 \nendometriosis care could be made. 362 \n 363 \n 364 \nThis is in line with clinical guidelines 34 but appeared to be poorly explained to the patients, who felt 365 \nthat their concerns about endometriosis were being ignored. Participants also reported that there 366 \nwas a delay before other diagnoses, such as endometriosis, were considered after the first line 367 \ntreatment for alternative conditions (such as IBS) failed22.  This could therefore act as a barrier to 368 \ndiagnosis, as affected women could become disengaged and fail to return to their doctor when 369 \nsymptoms persisted.  370 \n 371 \n 372 \nAnother miscommunication appeared to occur with the use of the oral contraceptive pill (OCP). 373 \nFrom the perspective of the healthcare professionals, a trial of treatment with the OCP could be 374 \ninformative to the diagnostic process. As recommended in the ESHRE guidelines12, the OCP was 375 \noften started early. If symptoms improved, it increased the likelihood that they were due to 376 \nendometriosis and therefore contributed to reaching the correct diagnosis25. However, if the 377 \n“Always as a GP, we’re terrified of missing something horrible, so you think about red \nflags” [GP] (Dixon)25. \n \n \n \n \n“They had to test for everything first and never once mentioned endometriosis as a \npossibility” [Patient] (Denny)24. \n\n 17  \npurpose of the trial of the OCP was not adequately explained to the patient, they often became 378 \ndisengaged, believing that their symptoms were being “masked” rather than treated22,23,25,28,33. 379 \nPatients reported that they did not want to take a medication without knowing the underlying cause 380 \nof their symptoms21. They also worried that the diagnostic pathway would need to begin again as 381 \nsoon as they could no longer use the OCP, for example, if they wanted to conceive or if they 382 \nexperienced side effects22,23,25. 383 \n 384 \n 385 \n 386 \n 387 \nWhen further investigations were carried out, the lack of an accurate, non-invasive method of 388 \ndiagnosis became an issue 23-25,29,30,32,33. This delayed diagnosis in two ways; unspecific, non-389 \ndiscriminatory investigations were often used to inappropriately rule out endometriosis as a 390 \ndiagnosis, or diagnosis was delayed due to concerns about the risks of a laparoscopic procedure.  391 \nIn both Ballard 23  and Mikesell31 , patients reported that a diagnosis of endometriosis was discounted 392 \nfollowing a normal transvaginal ultrasound, which falsely reassured their doctors that further 393 \ninvestigation or treatment was not necessary. This is an inappropriate use of the imaging modality 394 \nas, although the ESHRE guidelines recommend the use of ultrasound in the diagnostic work-up for 395 \nendometriosis, a negative finding cannot be used to exclude endometriosis, particularly in superficial 396 \nperitoneal disease or in cases of high clinical suspicion12. 397 \n 398 \n 399 \n 400 \n“You have to really try and positively engage the patient to come back and really \nconvince them that you want them to come back. Because you know if you give them \na 3-month trial of treatment, it doesn’t help, and they think ‘Well nothing really \nhappened last time, I’m not bothered, I’m going to leave it 6 months, and then I’m \ngoing to come back’, the years slip so quickly in that kind of timescale” [GP] (Dixon25).  \n“It was awful just going for these flipping internals all the time and being told there’s \nnothing there. To actually keep going backwards and forwards and having it, and \nthere’s nothing showing up. And when I’ve mentioned about having the… is it the \nlaparoscopy – having that done, they’re ‘Well, no, it won’t be done because there’s \nnothing showing up on these [ultrasounds]’!” [Patient] (Ballard23). \n\n 18  \nThe misconception amongst healthcare professionals that a diagnosis can only be made by 401 \nlaparoscopic surgery also acted as a barrier. Individuals with endometriosis in six of the papers 402 \nreported that there was a delay from the first consultation in primary care to receiving a referral to a 403 \nspecialist endometriosis service21-24,26,27,31,32. Participants in Denny24 perceived that their GP was 404 \nreluctant to refer them, with most affected women reporting that they didn’t think they were 405 \nreferred to secondary care soon enough.        406 \nFrom the GPs’ perspective in Dixon25 and Van der Zanden33, this was due to a difficulty in 407 \ndetermining when a referral was appropriate. In some cases, for example, if there were concerns 408 \nabout fertility, referral was straightforward, but for patients with mild or vague symptoms, GPs 409 \nreported that they struggled to determine whether a referral would be in the best interest of the 410 \npatient33. They were mindful that, traditionally, diagnosis required an invasive procedure with 411 \npotential risks, and some therefore saw it as a last resort33.  412 \n 413 \n 414 \nThis was exacerbated by doubts about the added value of establishing a definitive diagnosis, since 415 \nthe treatment options often appeared to be the same whether the diagnosis was confirmed or not. 416 \nSeveral GPs described experiences where specialists had prescribed medications that they could 417 \nhave given themselves33. This led to some GPs opting to trial treatment before making a referral to 418 \nsecondary care. 419 \nOthers expressed doubt about the value of a diagnostic label at all. In Dixon25, healthcare 420 \nprofessionals cautioned that having a diagnosis might not address all the patients’ concerns, and 421 \ncould instead lead to further anxiety and distress.  This led to a low sense of urgency for some of the 422 \nGPs, with participants stating that they would prefer to see if a trial of treatment with the OCP 423 \nworked before even raising endometriosis as a possible diagnosis.  424 \n“The only way you can really make it is with a laparoscopy and you don’t really want \nto put a woman through that unless you’ve reached the absolute end of the road” [GP] \n(Dixon)25.  \n \n\n 19  \n 425 \n 426 \n 427 \nNotably, participants did not share this sentiment. The majority of affected women in seven of the 428 \nstudies reported that getting a diagnosis for their symptoms was positive, allowing them to process 429 \ntheir experience and access specialist support21-24, 26,29,32. 430 \nFinally, participants in Zale (2020)30, a study carried out in the USA, which does not have universal 431 \nhealth coverage, also identified financial barriers to seeking a diagnosis. Even patients with access to 432 \nhealth insurance reported constraints on the providers that they were able to visit, the tests that 433 \nthey could access, and ultimately their treatment options due to high co-pays and deductibles. This 434 \nmeant diagnosis was often delayed due to financial restraints. 435 \n 436 \nDISCUSSION  437 \nThirteen papers, reporting twelve studies, were included identifying twelve barriers that delayed 438 \ndiagnosis of endometriosis.  Affected individuals reported that they struggled to differentiate 439 \npathological symptoms from normal menstruation, which was reinforced by the societal 440 \nnormalisation of menstrual pain and the lack of opportunity to discuss menstrual problems with 441 \nothers. This prevented  them from seeking medical advice until an acute event caused them to 442 \nreinterpret their experience as abnormal, prolonging the delay to seek medical advice. During this 443 \ntime, many  patients with endometriosis used self-management strategies to cope with symptoms, 444 \nfurther delaying their presentation to a medical professional. This suggests that there is a need to 445 \nprovide education about what constitutes ‘normal’ menstruation, potentially at secondary school as 446 \nthe symptoms of endometriosis often start in adolescence, and to raise awareness of menstrual 447 \nconditions. This would have multiple potential benefits; affected women may be encouraged to seek 448 \n“Moderator: For example a young girl, 16 years old, who comes to your office with \ncomplaints about her menstruation, would you tell her, you consider endometriosis \nwhen you prescribe her the pill? GP3: I wouldn’t even think of it. GP2: No, me neither”. \n(Van der Zanden)33.   \n\n 20  \nadvice earlier, and their family members, peers, and employers may be more supportive if they have 449 \nbetter understanding of the condition.  450 \nOnce  affected individuals sought medical advice, they experienced delays before being referred to 451 \nsecondary care. From the patients’ perspective, this was caused by dismissal of their symptoms by 452 \nGPs, and the perception that doctors did not have adequate knowledge of the condition, leading to 453 \nmisdiagnosis and the use of non-discriminatory tests. 454 \nGPs and non-specialist gynaecologists themselves reported that they had insufficient knowledge 455 \nabout the symptoms, diagnosis and treatment of endometriosis, and some struggled to know when 456 \nto refer patients to secondary care. Additional mandatory training about menstrual conditions is 457 \nrequired during medical school, as well as comprehensive in-service education, and clear, evidence-458 \nbased guidelines for reference. 459 \nAs participants in the studies consistently reported feeling dismissed by healthcare professionals, 460 \nthere may also be an opportunity to reflect on the ‘gender health gap’, a term used to describe the 461 \ndisparities in the way that women access and experience healthcare 37. Opportunities for healthcare 462 \nprofessionals to enhance their knowledge of women’s health and challenge their unconscious biases 463 \nmay be helpful, as may workshops to improve communication skills given that misunderstandings 464 \nwere frequently reported. 465 \n 466 \nStrengths and Limitations 467 \nThis review was the first to specifically explore barriers to the diagnosis of endometriosis from a 468 \nqualitative perspective. Previous reviews by Young (2015)38 and Culley (2013)6 have explored 469 \ndiagnostic delay as part of their wider scope. Consistent with our findings, Young (2015) 38 found that 470 \nthe normalisation of symptoms by the patient, their peers, and their GPs was a significant problem, 471 \nas was the misdiagnosis of symptoms as psychological or as irritable bowel syndrome. Similarly, 472 \n\n 21  \nCulley (2013)6 reported that diagnostic delays occurred at the patient level due to poor awareness of 473 \nthe condition, and at the medical professional level due to the dismissal of symptoms. 474 \nThis review was also the first to explore the barriers to diagnosis from the perspective of both 475 \naffected women and healthcare professionals, giving  more balanced impression. The findings are 476 \nbased on good quality data and provide valuable information, especially as the improvement of the 477 \ndiagnosis delay is one of the top ten research priorities for endometriosis39.    478 \nHowever, all of the primary studies included were conducted in high-income countries, most of 479 \nwhich had universal healthcare, potentially limiting generalisability to other contexts (it is likely that 480 \nthis review underestimates the effect of financial barriers to seeking a diagnosis). Additionally, whilst 481 \nnot all of the studies reported on the demographics of the participants, of those that did, the 482 \nmajority of participants were White women. The review may therefore be unrepresentative of the 483 \nexperiences of people of Colour, especially as the prevalence and diagnosis of endometriosis is 484 \nsuspected to be influenced by ethnicity40. 485 \nAll studies focusing on the views of affected women recruited their participants from specialist 486 \ngynaecology clinics or from support organisations, which generally support those with severe 487 \ndisease. Therefore, the samples may not be skewed towards those with more complex, debilitating 488 \ndisease. Finally, the papers focusing on the views of healthcare professionals exclusively recruited 489 \ndoctors, the majority of which were GPs, so the views of other healthcare professionals, including 490 \nendometriosis specialists, could not be analysed.  491 \nThe review was also conducted by a single reviewer (the lead author) which may have increased the 492 \nrisk bias or methodological error17. Future reviews could include additional databases and journals, 493 \nunpublished material and non-English papers to identify more eligible studies and reduce the risk of 494 \npublication and language biases. 495 \nFuture research priorities 496 \n\n 22  \nIdentification of factors that facilitate diagnosis and demonstrations of good practice are necessary 497 \nto guide the production of evidence-based, decision-making resources. 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BJOG: An International 621 \nJournal of Obstetrics & Gynaecology 2019;126(9):1104-1115. doi: 10.1111/1471-0528.15692 622 \n\n 26  \n  \n\n 27  \nTable 1: The Characteristics of the Included Studies. \nAuthor(s) \n(Year) \n \nTitle Setting of \nResearch \nStudy Aim Sampling Method Sample size \n(age range of \nparticipants in \nyears) \nData Collection \nMethod \nData Analysis \nMethod \nDenny E \n(2004)19 \nWomen’s \nexperiences of \nendometriosis. \nBirmingham, \nUnited \nKingdom. \nTo explore women’s \nexperiences of living \nwith endometriosis. \nConvenience \nsampling via the \nmessage board of a \nself-help group, and \nthe gynaecology \ndepartment of a \nlocal hospital, and \nsnowball sampling. \n15 patients (not \ngiven). \nSemi-structured \ninterviews. \nInductive \nthematic \nanalysis.  \nJones G, \nJenkinson C, \nKennedy S \n(2004)20 \nThe impact of \nendometriosis \nupon quality of \nlife: a \nqualitative \nanalysis. \nOxford, United \nKingdom. \nTo identify and \nunderstand, from \nthe patient’s \nperspective, the \nareas of HRQoL that \nare affected by \nendometriosis. \nConvenience \nsampling from the \ngynaecology \noutpatient clinic at \nJohn Radcliffe \nHospital. \n24 patients (21-\n44). \nSemi-structured \ninterviews. \nGrounded \ntheory. \nBallard K, \nLowton K, \nWright J \n(2006)21 \nWhat’s the \ndelay? A \nqualitative \nstudy of \nwomen’s \nexperiences of \nreaching a \nSoutheast \nEngland, United \nKingdom. \nTo investigate the \nreasons that women \nexperience delays in \nthe diagnosis of \nendometriosis and \nthe impact of this \non women’s \nPurposive sampling \nof women \nattending a pelvic \npain clinic due to \nsuspected \nendometriosis. \n28 patients (16-\n47). \nSemi-structured \ninterviews. \nInductive \nthematic \nanalysis. \n\n 28  \ndiagnosis of \nendometriosis.  \nexperiences of the \ncondition. \nDenny E, Mann \nC (2008) 22 \nEndometriosis \nand the primary \ncare \nconsultation.  \nBirmingham, \nUnited \nKingdom. \nTo explore the \nexperience of \nwomen with \nendometriosis in the \nprimary care \nsetting. \nPurposive sampling \nfrom a dedicated \nendometriosis \nclinic. \n30 patients (19-\n44). \nSemi-structured \ninterviews. \nInductive \nthematic \nanalysis. \nDixon S, \nMcNiven A, \nTalbot A, \nHinton L \n(2021)23 \nNavigating \npossible \nendometriosis \nin primary care: \na qualitative \nstudy of GP \nperspectives. \nOxford, United \nKingdom. \nTo explore what GPs \nidentify as \nimportant \nconsiderations \nwhen caring for \nwomen with \nsymptoms that raise \nthe possibility of \nendometriosis. \n-Purposive \nsampling from \nLocal Clinical \nResearch Network \nteams, followed by \nsnowball sampling.  \n42 general \npractitioners \n(not given). \nSemi-structured \ninterviews. \nInductive \nframework \nanalysis. \nCox H, \nHenderson L, \nAndersen N, \nCagliarini G, Ski \nC (2003)24 \nFocus group \nstudy of \nendometriosis: \nStruggle, loss \nand the medical \nmerry-go-\nround. \nVictoria, \nAustralia  \nTo increase \nawareness of \nwomen’s \nexperiences of \nendometriosis and \nthe lack of support \nfor women \nsufferers. \nConvenience \nsampling from a \nspecialist \nendometriosis \ncentre and a charity \norganisation.  \n61 patients (20-\n64).  \nSemi-structured \nfocus groups. \nInductive \nthematic \nanalysis. \nManderson L, \nWarren N, \nCircuit breaking: \npathways of \ntreatment \nVictoria, \nAustralia. \nTo we explore the \ncircumstances \nunder which the \nPurposive sampling \nfrom community \nnewspapers, and \n40 patients (20-\n78). \nIn-depth  \n\n 29  \nMarkovic M \n(2008)25 \nseeking for \nwomen with \nendometriosis \nin Australia. \ncycle of personal- or \nprofessional-\ninduced delay in \nendometriosis was \ninterrupted.  \nnotice boards and \nfrom snowballing. \nunstructured \ninterviews. \nInductive \nthematic \nanalysis. \nMarkovic M, \nManderson L, \nWarren N \n(2008)26 \nEndurance and \ncontest: \nwomen’s \nnarratives of \nendometriosis.  \nTo enrich our \nunderstanding of \nthe relationship \nbetween the \npatient’s socio-\ndemographic \nbackground and \nhealth-related \nphenomena, by \nidentifying \ndistinctive \ndifferences among \nwomen’s narratives. \n30 patients (20-\n78). \nMoradi M, \nParker M, \nSneddon A, \nLopez V, \nEllwood D \n(2014)27 \nImpact of \nendometriosis \non women’s \nlives: a \nqualitative \nstudy.  \nCanberra, \nAustralia. \nTo explore women’s \nexperience of \nendometriosis and \nits impact. \nConvenience \nsampling from a \ndedicated \nendometriosis \ncentre, and from a \ngeneral practice in \nthe community. \n35 patients (17-\n53). \nSemi-structured \nfocus groups. \nInductive \nthematic \nanalysis. \nZale M, \nLambert E, \nLaNoue MD, \nShedding light \non \nendometriosis: \nPatient and \nMultiple cities, \nUnited States of \nAmerica. \n1) To assess the \nperceptions and \nawareness of \nendometriosis \n-Convenience \nsampling of \nproviders from \nconferences and \n4 providers (not \ngiven).  \nSemi-structured \ninterviews. \nInductive \nthematic \nanalysis.  \n\n 30  \nLeader AE \n(2020)28 \nprovider \nperspectives on \na challenging \ndisease.  \namongst providers \nwho diagnose and \ntreat endometriosis \nand 2) to assess the \nendometriosis \npatient experience \nin the United States. \nseminars for \nphysicians in \ngastroenterology, \nobstetrics and \ngynaecology, \ninternal medicine \nand primary care. \n-Convenience \nsampling of \npatients from the \nsocial media page \nof a national \nendometriosis \ncharity.  \n12 patients (20-\n43). \nGrundström H, \nAlehagen S, \nKjølhede P, \nBerterö C \n(2016)29 \nThe double-\nedged \nexperience of \nhealthcare \nencounters \namong women \nwith \nendometriosis: \na qualitative \nstudy.  \nÖstergötland \nCounty, \nSweden. \nTo identify and \ndescribe the \nexperiences of \nhealthcare \nencounters among \nwomen with \nendometriosis. \nPurposive sampling \nfrom an outpatient \ngynaecology clinic. \n9 patients (25-\n55). \nSemi-structured \ninterviews. \nModified \nStevick-\nColaizii-Keen \nmethod of \nanalysis. \nvan der Zander \nM, Teunissen \nDA, van der \nWoord I, Braat \nD, Nelen WL, \nBarriers and \nfacilitators to \nthe timely \ndiagnosis of \nendometriosis \nThe \nNetherlands. \nTo identify barriers \nand facilitators to \nthe timely diagnosis \nof endometriosis \nPurposive sampling \nof group practices \nfrom the College of \nGeneral \nPractitioners based \n43 providers \n(not given). \nSemi-structured \nfocus groups. \nContent \nanalysis. \n\n 31  \nNap AW \n(2020)30 \nin primary care \nin the \nNetherlands. \nfrom the GPs’ \nperspective. \non geographical \nspread.  \nMikesell L, \nBontempo AC \n(2022). 31 \nHealthcare \nProviders’ \nImpact on the \nCare \nExperiences of \nPatients with \nEndometriosis: \nThe Value of \nTrust \nMultiple cities, \nUnited States of \nAmerica.  \n1) To explore how \npatients with \nendometriosis \nperceive healthcare \nprofessionals to \nserve as barriers \nand facilitators to \nthe their and 2) to \nassess the role that \ntrust in healthcare \nprofessionals plays \nin shaping care \nexperiences.  \nConvenience \nsampling of \npatients from the \nsocial media pages \nof endometriosis \norganisations.  \n222 patients \n(18-64) \nOpen-ended \nquestionnaire.  \nInductive \nthematic \nanalysis. \n \n \n \n \n \n \n \n \n\n 32  \nTable 2: The findings of the CASP Qualitative Checklist13 for each study. ✔ represents a ‘Yes’ decision and ? represents a ‘Cannot Tell’ decision. X represents a \n‘No’ decision. \n \nStudy Clear \nAims \nAppropriate \nMethodology \nAppropriate \ndesign \nRecruitme\nnt \nData \nCollectio\nn \nResearcher \nRelationshi\np \nEthica\nl \nIssues \nData \nAnalysi\ns \nClear \nFinding\ns \nValuabl\ne \nOverall \nAssessme\nnt \nDenny \n(2004)19 \n✔ ✔ ✔ ✔ ✔ ? ✔ ✔ ✔ ✔ Minor \nconcerns \nJones \n(2004)20 \n✔ ✔ ✔ ✔ ✔ ✔ ✔ ✔ ✔ ✔ No or very \nminor \nconcerns \nBallard \n(2006)21 \n✔ ✔ ✔ ✔ ✔ ? ✔ ✔ ✔ ✔ Minor \nconcerns \nDenny \n(2008)22 \n✔ ✔ ✔ ✔ ✔ ? ✔ ✔ ✔ ✔ Minor \nconcerns \nDixon \n(2021)23 \n✔ ✔ ✔ ✔ ✔ ? ✔ ✔ ✔ ✔ Minor \nconcerns \nCox \n(2003)24 \n✔ ✔ ✔ ? ✔ ? ? ✔ ✔ ✔ Moderate \nConcerns \nManderso\nn (2008)25 \nand \n✔ ✔ ✔ ✔ ✔ ? ? ✔ ✔ ✔ Minor \nconcerns \n\n 33  \nMarkovic \n(2008)26 \nMoradi \n(2014)27 \n✔ ✔ ✔ ✔ ✔ ? ✔ ✔ ✔ ✔ Minor \nconcerns \nZale \n(2020)28 \n✔ ✔ ✔ ✔ ✔ ? ✔ ✔ ✔ ✔ Minor \nconcerns \nGrundströ\nm (2016)29 \n✔ ✔ ✔ ✔ ✔ ? ✔ ✔ ✔ ✔ Minor \nconcerns \nvan der \nZander \n(2020)30 \n✔ ✔ ✔ ✔ ✔ ? ? ✔ ✔ ✔ Minor \nconcerns \nMikesell \n(2022)31 \n✔ ✔ ✔ ? ? ? ? ✔ ✔ ✔ Moderate \nconcerns \n \n \n \n \n \n \n \n \n \n\n 34  \nSupplementary Table 1: Search Strategy for MEDLINE via Ovid \nDatabase: Ovid MEDLINE(R) and Epub Ahead of Print, In-Process, In-Data Review & Other Non-\nIndexed Citations and Daily  \n Search Term \n1 Exp endometriosis/ \n2 Endometrio*.mp. \n3 “Chronic pelvic pain”.mp. OR Pelvic Pain/  \n4 Dysmenorrhea/  \n5  Menstruation Disturbances/ \n6 Dyspareunia/ \n7 Dyschezia.mp. \n8 1 or 2 or 3 or 4 or 5 or 6 or 7 \n9 exp Diagnosis/ \n10 exp Delayed Diagnosis/ \n11 exp Missed Diagnosis/ \n12 “Late Diagnosis”.mp. \n13 Time Factors/ and diagnos*.mp. \n14 9 or 10 or 11 or 12 or 13 \n15 8 and 14 \n\n 35  \n16 exp qualitative research/ \n17 Interviews as topic/ or Interview/ \n18 Focus groups/ \n19 Narration/ \n20 “Semi-structured” or semistructured or unstructured or informal or “in-depth” or indepth or \n“face-to-face” or structured or guide.mp. \n21 Discussion or questionnaire*.ti,ab \n22 Qualitative or ethnograph* or fieldwork or “field work”.mp. \n23 16 or 17 or 18 or 19 or 20 or 21 or 22 \n24 Patient Satisfaction/ \n25 Health Knowledge, Attitudes, Practice/ \n26 Attitude of Health Personnel/ \n27 Attitude* or experience* or view* or reflect* or perception* \n28 24 or 25 or 26 or 27  \n29 23 and 28  \n30 15 and 29  \n \n \n \n\n 36  \nSupplementary Table 2: Search Strategy for APA PsycINFO  \nDatabase: APA PsycInfo via Ovid \n Search Term \n1 Endometrio*.mp. \n2 (“Chronic Pelvic Pain” or Pelvic Pain).mp. \n3 Exp Dysmenorrhea/ \n4 Exp Menstrual disorders/ \n5 Exp Dyspareunia/ \n6 Dyschezia.mp. \n7 1 or 2 or 3 or 4 or 5 or 6 \n8 Exp Diagnosis/ \n9 “Delayed diagnosis”.mp. \n10 “Missed diagnosis”.mp. \n11 “Late diagnosis”.mp. \n12 Time factors and diagnos*.mp. \n13 8 or 9 or 10 or 11 or 12 \n14 7 and 13 \n15 Exp Qualitative Methods/ \n16 qualitative.tw. \n\n 37  \n17 Exp Interviews/ or interview.tw. \n18 Exp Focus Group/ \n19 (“Semi-structured” or semistructured or unstructured or informal or “in-depth” or indepth \nor “face-to-face” or structured or guide or guides).ti,ab,id. \n20 Ethnograph* or fieldwork or “field work” or discussion*.ti,ab,id. \n21 15 or 16 or 17 or 18 or 19 or 20 \n22 Exp Client satisfaction/ \n23 Exp Health Attitudes/ or Exp Health Knowledge/ \n24 Exp Health Personnel Attitudes/ \n25 Attitude* or experience* or view* or reflect* or perception*.mp. \n26 22 or 23 or 24 or 25 \n27 21 or 26 \n28 14 and 27 \n \n \n \n \n \n \n \n\n 38  \nSupplementary Table 3: Search Strategy for EBSCO CINAHL  \nDatabase Searched: EBSCO CINAHL \n Search Term \n1 (MH “Endometriosis”) or “chronic pelvic pain” or (MH “Pelvic Pain”) or (MH Menstruation \nDisorders+) or (MH “Dysmenorrhoea”) or (MH “Dyspareunia”) or “dyschezia” \n2 (MH “Diagnosis”) or (MH “Diagnosis, Delayed”) or (MH “Failure to Diagnose”) or (MH “Time \nFactors) \n3 (MH “Qualitative Studies+”) or MH (“Interviews+”) or (MH “Semi-structured interview”) or \n(MH “Structured interview”) or (MH “Unstructured interview”) (MH “Focus Groups”) or (MH \n\"Ethnographic Research\") or (MH \"Discussion\") or (MH \"Fieldwork\") OR \"Qualitative\" \n4 (MH “Patient Satisfaction+”) or (MH “Attitude to Health”) or (MH “Attitude of Health \nPersonnel”+) or “attitude” or “experience” or “view” or “reflection” or “perception”  \n5 3 or 4  \n6 1 and 2 and 5","source_license":"CC0","license_restricted":false}