{"paper_id":"1df4de97-5163-4d80-8f95-9ba47b7e3ea3","body_text":"de C Williams and McGrigor  \nBMC Women’s Health           (2024) 24:50  \nhttps://doi.org/10.1186/s12905-023-02874-3\nRESEARCH Open Access\n© The Author(s) 2024. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which \npermits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the \noriginal author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or \nother third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line \nto the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory \nregulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this \nlicence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecom-\nmons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.\nBMC Women’s Health\nA thematic synthesis of qualitative studies \nand surveys of the psychological experience \nof painful endometriosis\nAmanda C. de C Williams1* and Honor McGrigor1 \nAbstract \nBackground Endometriosis is a widespread problem in women of reproductive age, causing cyclical and non-cycli-\ncal pain in the pelvis and elsewhere, and associated with fatigue, fertility problems, and other symptoms. As a chronic \npain problem, psychological variables are important in adjustment and quality of life, but have not been systemati-\ncally studied.\nMethods A systematic search of multiple databases was conducted to obtain surveys and qualitative studies \nof women’s experience of pain from endometriosis. Surveys were combined narratively; qualitative studies were com-\nbined by thematic synthesis, and the latter rated for methodological quality.\nResults Over 2000 records were screened on title and abstract, and provided 22 surveys and 33 qualitative studies \nfrom which accounts could be extracted of the psychological components of pain in endometriosis. Surveys mostly \naddressed quality of life in endometriosis, with poorer quality of life associated with higher levels of pain and of dis-\ntress, but few referred to coherent psychological models. Qualitative studies focused rather on women’s experience \nof living with endometriosis, including trajectories of diagnosis and treatment, with a few addressing meaning \nand identity. Thematic synthesis provided 10 themes, under the groupings of internal experience of endometriosis \n(impact on body, emotions, and life); interface with the external world (through self-regulation and social regulation); \neffects on interpersonal and social life, and encounters with medical care.\nConclusions The psychological components of pain from endometriosis only partly corresponded with standard \npsychological models of pain, derived from musculoskeletal pain studies, with fewer fears about physical integrity \nand more about difficulties of managing pain and other symptoms in social settings, including work. Better under-\nstanding of the particular psychological threats of endometriosis, and integration of this understanding into medical \ncare with opportunities for psychologically-based pain management, would substantially improve the experience \nand quality of life of women with painful endometriosis.\nKeywords Pelvic pain, Infertility, Social impact, Quality of life, Delayed diagnosis, Treatment failure, Fear of disease \nprogression\nBackground\nEndometriosis affects about 5–8% women of reproduc -\ntive age [1–4]. Typical symptoms include dysmenorrhea, \nnoncyclic pelvic pain, dyspareunia, fatigue, pain on emp -\ntying the bladder or bowels, and heavy bleeding [5, 6]. \nPain is not only felt in the pelvis, but can be localized to \n*Correspondence:\nAmanda C. de C Williams\namanda.williams@ucl.ac.uk\n1 Research Dept of Clinical, Educational & Health Psychology, University \nCollege London, Gower St, London WC1E 6BT, UK\n\nPage 2 of 16de C Williams and McGrigor  BMC Women’s Health           (2024) 24:50 \nvarious other parts of the body, such as the lower back. \nPain and other symptoms can be felt constantly, cyclically \nwith worsening around menstruation and/or ovulation \n[6], or unpredictably, and they vary between and within \npeople with endometriosis. Additionally, endometrio -\nsis can be comorbid with other chronic (persistent) pain \nconditions, including tension headache and migraine, \nfibromyalgia, myofascial pain, vulvodynia, bladder pain, \nand low back pain, often referred to as Chronic Overlap -\nping Pain Conditions (COPCs) and attributed to changes \nin central sensitization [3, 7, 8].\nDiagnosis is commonly delayed for several years after \nsymptom onset, and access to imaging or surgical diag -\nnosis may be restricted by social inequalities [3] as well \nas by limited knowledge of endometriosis in primary \ncare, with difficulty both for women and for healthcare \nstaff distinguishing endometriosis from putatively ‘nor -\nmal’ dysmenorrhea [1, 9–11]. Following diagnosis, pain \nreduction sometimes takes second place to treating the \ncondition, but neither size of lesions [12] nor stage of dis-\nease predicts frequency, constancy, or intensity of pain. \nFinally, pain often persists or recurs after effective surgi -\ncal, hormonal, or other treatments [13].\nIn any chronic pain scenario, psychological variables \nare important in determining the personal experience of \nchronic pain, overall adaptation, and prognosis [14, 15]. \nDifficulty living with chronic pain may or may not reach \nclinical criteria for depression or anxiety [16], but tends \nto be focused on pain and its implications for overall \nhealth, including fertility, as well as on difficulties in eve -\nryday life and in lifetime goals. Intimate and social rela -\ntionships are disrupted, as is work, with implications for \ncareer and financial security. Women can find it hard to \ncommunicate their pain and other symptoms, or to find \nsomeone who has the appropriate skill to handle their \nstruggle [17]. Therefore, people with endometriosis may \nbecome isolated and distressed [1, 18–20]. Overall, qual -\nity of life is reduced, although that is not necessarily rou -\ntinely reflected in studies of natural history or treatment \noutcome [21]. Additionally, its association with men -\nstrual bleeding renders it stigmatized [19], while female \npelvic pains in general are at risk of being dismissed as \nmental health problems (22, 17].\nWithin the broader biopsychosocial framework, the \ndominant psychological model in chronic pain is that of \nfear and avoidance [14, 22], whereby overestimation of \nthe threat inherent in pain for physical integrity leads to \navoidance of a wide range of activity, which in turn leads \nboth to increasing disability (through deconditioning) \nand to depression (through losses inherent in avoidance). \nBoth anxiety about pain and damage and losses due to \nrestricted activity contribute to worsening of pain experi-\nence (particularly by descending modulation of pain) and \nto maintaining anxiety and restricted activity. However, \nthis is largely based on studies of musculoskeletal pain, \noften low back pain, in which people with pain associ -\nate that pain with damage to essential joint and vertebral \nstructures, provoking caution around movement; for \ninstance, fewer than 10 of 335 studies of pain-related fear \nand avoidance concerned visceral pain, and none endo -\nmetriosis [23]. It is not clear to what extent the same psy-\nchological model applies to visceral pains, where fears of \ndamage may be less prominent, and fears of disease and \nlong-term prognosis where disease is diagnosed may be \nfar more salient; nor is it clear what activities are rou -\ntinely avoided and how that affects everyday life in both \nshort and long term.\nIn early studies, very similar mood and social adjust -\nment outcomes were found in women with diagnosed \nendometriosis compared with those with negative lapa -\nroscopy for pelvic pain [24], and, despite a high level of \nconcern about undiagnosed disease, few gynecology \npatients with pain endorsed worry about cancer [25]. \nNo psychological models specific to endometriosis, or to \npainful gynecological conditions, have developed, and a \n2015 systematic review and thematic synthesis of quali -\ntative research in endometriosis [26] noted the lack of \nstudies of emotional and social wellbeing. One review \nsince has provided more information on psychologi -\ncal impact of endometriosis. A narrative synthesis of 16 \nqualitative studies [1] described themes of powerlessness, \nand of loneliness and isolation, but not of anxiety about \npain, and worry only in relation to infertility. A more \nrecent systematic review included meta-analyses show -\ning higher depression and anxiety scores in women with \nendometriosis when compared with healthy controls, but \nnot when compared with other women with chronic pel -\nvic pain [16]; the focus of depression and anxiety were \nnot described, although their correlation in at least some \nincluded studies with pain levels and fertility problems \nwas noted.\nSeveral mixed methods or combined quantitative and \nqualitative reviews add a little more detail of psycho -\nlogical problems associated with endometriosis. One, \non coping in women with endometriosis [27], reported \ncatastrophic thinking to be associated with more pain, \nand “passive” coping and avoidance with poorer mental \nhealth. This review [27] also sought studies of metacogni-\ntion in women with endometriosis, but found none. The \nsame authors, in a large mixed method study, reported \nthat worry about pain, rumination and catastrophiz -\ning, were all associated with more distress [28], a result \nconsistent with another review of observational studies \n[4] and a separate meta-analysis on stress and endome -\ntriosis [29]. The only review to take a social focus was \nan account of stigma causing distress; family members, \n\nPage 3 of 16\nde C Williams and McGrigor  BMC Women’s Health           (2024) 24:50 \n \nclinicians, and others who believed endometriosis to \nbe no worse than period pain represented women who \nstruggled with endometriosis pain as exaggerating or \ncomplaining excessively [19].\nOverall, there is little theorising in this area about the \nnature of distress or about the fit of existing psychologi -\ncal models of pain in women with painful endometrio -\nsis. This literature review aims to elaborate the findings \non psychological models used in endometriosis pain \ndescribed in qualitative and survey research, and to out -\nline outstanding areas that need further investigation, \nusing a systematic method of synthesizing the findings of \nqualitative studies [30].\nMethods\nThis literature review was pre-registered (PROSPERO \nCRD42022330527), and in preparation for the review, \nthe researchers discussed endometriosis and key litera -\nture with expert clinicians and experts by experience, \nand consulted an academic librarian about the search \nterms and databases to use. Reporting of the review is in \naccordance with the ENTREQ statement [31] (see addi -\ntional files Table 2).\nSearch strategy\nOn 6th May 2022, a comprehensive literature search of \nall years of Medline, Embase, PsycInfo, PsycExtra, Pro -\nQuest Dissertations & Theses Global, and LILACs was \nconducted, aiming to include grey literature and interna -\ntional databases. Broad search terms on endometriosis, \npelvic pain, quality of life and experience were employed, \nand as they returned a large number of results, references \nof studies retrieved were not further searched. The search \nterms used are shown in additional files Table 1.\nInclusion and exclusion criteria\nThe inclusion criteria were qualitative research or sur -\nveys, from peer reviewed journals or publicly available \nPhD theses, whose participants were adult women (18 \nand over), not solely concerned with healthcare experi -\nence. There were no limitations placed on language or \ndate of publication. We excluded studies unrelated to \nendometriosis, studies of non-human animals, literature \nreviews, and conference abstracts.\nStudy selection\nThis search returned a large number of records, initially \nscreened using the Endnote X9.3.3 deduplication func -\ntion, with further duplications removed by hand. Titles \nwere screened to remove theses below PhD Level and \nirrelevant literature (e.g. male pelvic pain, cancer etc.). \nThe next stage of study selection (see Fig. 1) involved one \nresearcher (HM) screening titles and abstracts, remov -\ning those that were solely treatment comparisons, that \nfocused on chronic pelvic pain (CPP) with no reference to \nendometriosis, or that focused exclusively on interactions \nwith healthcare professionals. Another researcher (AW) \nchecked a ~ 15% random sample (300) of the rejected \ntitles plus all 270 studies identified as possibly meeting \ncriteria; decisions were discussed and agreed. Full papers \nFig. 1 Search and selection of qualitative studies\n\nPage 4 of 16de C Williams and McGrigor  BMC Women’s Health           (2024) 24:50 \nwere read for all possibly eligible studies, with further \nremoval of conference abstracts, papers with no refer -\nence to psychological models, accounts only of treatment \nor healthcare experience, or chronic pelvic pain without \nseparate description of participants with endometriosis.\nQuality assessment\nThe surveys and qualitative research were then analysed \nand synthesized separately. For the qualitative research, \nan amalgamation of the CASP and COREQ quality \nassessment tools (Appendix A) was used to assess the \nquality of the studies. The CASP and COREQ quality \nassessment tools were both selected as appropriate after \ntrying several other tools on four studies. Duplicate ques-\ntions on the two tools were removed, the combined ver -\nsion test run on four further studies, nonessential items \nremoved, and then the entire set split for rating, with an \noverlap of four studies to check consistency. Lower qual -\nity studies were not removed, but the rating was kept \nin mind during analysis. The researchers both assessed \nfour randomly selected studies, then compared findings. \nFollowing this, they split the studies, and individually \nassessed them.\nSurveys: narrative analysis\nFor the surveys, data were extracted using narrative syn -\nthesis methods [32], suitable for thin data, on the popu -\nlation, sample size, location of study, questionnaire and \nresearch tools used, the preoccupation/themes of the \nsurvey questions and psychological models discussed.\nQualitative data synthesis\nThe data was synthesized according to Thomas and \nHarden’s [30, 33] thematic synthesis method using induc-\ntive coding. This was chosen after reading around the \ntopic (particularly [33, 34]) and discussion with a col -\nleague experienced in the fields of pain and of methods of \nqualitative synthesis.\nFirst, line by line codes were developed by the first \nresearcher (HM), and used on the Results and Discus -\nsion sections of all included papers, recording in NVivo \n12 1.6.1. The resulting longlist contained 189 codes. The \nsecond researcher (AW) applied these codes to 20% of \nthe sample primary studies, suggesting new ones where \nnecessary. The codes were discussed, agreed, and col -\nlapsed or combined. Descriptive themes, staying close to \nthe content of the primary studies, were then generated \nfrom the grouped codes, separately by each researcher, \nthen discussed and agreed. Finally, analytic (interpreta -\ntive) themes were developed jointly using the map of \ndescriptive themes and their constituent codes. Themes \nwere, where possible, given a title that used the words of \na participant from one of the primary studies.\nPositionality and reflexivity\nGiven the subjective bias inherent in decisions described \nabove, and of interpretations, we include a statement of \nposition to make our perspectives more transparent. \nAW is an academic and clinical psychologist, with over \n35 years’ experience working in chronic pain, includ -\ning chronic pelvic pain. While she has used the fear and \navoidance model in academic and clinical work, she con -\nsiders it to capture only part of the chronic pain experi -\nence, even in musculoskeletal pain. HM is a research \nassistant, with experience in qualitative research. This \nwas her first project researching pain, and considers the \nbiopsychosocial model to be the most convincing pain \nmodel to date. Throughout the project, the researchers \naimed for reflexive processing of reviewed material, con -\nsidering at each point whether and how their beliefs and \nconcerns might influence their decisions.\nResults\nOver 2000 records were screened on title and abstract, \nand 109 selected as possibly eligible. These were read as \nfull papers. Despite help from libraries, and attempts to \ncontact authors, full texts for seven studies could not be \nobtained. Two studies were discovered in the search as \ntheses, but authors directed us to their published stud -\nies, which were included. Three survey studies, all with \nabstracts but not full text in English, appeared to be \nunlikely to meet criteria so were excluded. Responses \nwere not forthcoming from two sets of authors. This \nresulted in the synthesis of 22 surveys and 33 qualitative \ntexts, one of which was translated from Portuguese.\nSurveys\nThe research literature that used surveys of women with \nendometriosis (with or without a comparison popula -\ntion) to elicit information about physical and psychologi -\ncal health were predominantly concerned with quality of \nlife and what physical and psychological variables were \nassociated with it. This appeared to be an area of increas -\ning interest: seven studies were published between 2016 \nand 2019, six studies each in 2020 and 2021, and three \nin 2022 up to the point of the search. Six studies were \nfrom Australia, four from the USA and Canada, one from \nBrazil, one from South Africa, and the remainder from \nEurope. All but one, on adolescents up to 25 years old, \nrecruited adults, usually defined as over 18 years, mainly \nrelying on self-diagnosis, with some self-report of medi -\ncal diagnosis. All studies were cross-sectional, 12 studies \ndescribing a single population, eight comparing women \nwith endometriosis with women without, and two mak -\ning comparisons within a sample of women with endo -\nmetriosis, one relating to psychological health and the \nother to diet.\n\nPage 5 of 16\nde C Williams and McGrigor  BMC Women’s Health           (2024) 24:50 \n \nThe most common focus of the studies was quality of \nlife and the gynecological, pain and psychological symp -\ntoms associated with it (nine studies), with two investi -\ngating sexual activity in relation to quality of life. Pain \nand its relationship to lifestyle problems in endometriosis \nwas addressed by three studies; psychological problems, \ndepression in particular, were the focus of two studies \nand stigma of one further study. Fatigue was investigated \nin two studies; and diet and infertility in one each. One \nstudy tested the performance of a generic psychological \nquestionnaire in an endometriosis population.\nPain (pelvic pain, abdominal pain, low back pain, men -\nstrual pain, dyspareunia, and pain on defecation) was \ninvestigated in relation to quality of life in 10 studies \n[34–43], all of which found more pain to be associated \nwith poorer quality of life (often health-related quality of \nlife), greater impact of endometriosis on life, or poorer \npsychological health. Two of these 11 [35, 39] reported \ndyspareunia alone to be associated with poorer quality \nof life. One further study [44] did not analyse pain sepa -\nrately from a broader physical function score which was \nassociated with poorer quality of life. Two other studies \non pain [45, 46] investigated characteristics of the pain \nitself and reported evidence of central sensitization.\nThe association of endometriosis symptoms with psy -\nchological symptomatology was investigated in eight \nstudies [37, 42–44, 47–50], generally finding greater \ndistress (although Bien [34] did not) and an association \nbetween greater distress, more or more severe endo -\nmetriosis symptoms and particularly pain, and poorer \nquality of life. Only one study [41] was explicit about the \npsychological model used as a basis for the investigation, \ndescribing the fear and avoidance model [51] and using \ncatastrophizing [52] as a central variable. They described \nphenomena related to the fear and avoidance model in \nterms of pain cognition: hypervigilance to pain, cata -\nstrophizing, and fear of pain, all of which they found to \nbe more extensive in women with endometriosis than in \nhealthy controls; avoidance of activity on the basis of fear \nof pain was inferred, not sampled. Other papers in this \nsample drew implicitly or explicitly on psychological dis -\ntress as a common consequence of endometriosis, but for \nat least one survey psychological distress was assumed \nto be an antecedent [42]. (See additional files for surveys \nnot referenced here.)\nQualitative studies\nThe largest number of studies (11) was conducted in the \nUK; Australia and the USA provided 5 each, with 3 from \nBrazil, 2 each from Italy and Germany, and one each \nfrom New Zealand, Iran, Puerto Rico, Spain, The Nether-\nlands, Sweden, Hungary; and one sampled from France, \nGermany, and the USA. They were published from 1995 \nto 2022, the majority since 2018, with a range of partici -\npants from six to 61, a mean of 25 per study. Participants \nwere mainly recruited through advertisements in endo -\nmetriosis groups and online message boards and social \nmedia (19 studies), with 7 studies using patients identi -\nfied/referred by medical professionals, 7 recruited from \noutpatient clinics or hospitals, 5 using word of mouth/\nsnowballing alongside those listed above, 4 using a sub -\nset of a larger study, and 2 using a medical recruitment \ncompany. For the three studies [53–55] that included \nhealthcare professionals in their sample, we used as far \nas possible only material from women with endome -\ntriosis. Twenty-three of the 33 studies collected data \nthrough individual interview, with a mix of face-to-face \nand online settings; five used focus groups; three used a \nwritten response, and two used combinations of these \nmethods. Participants were mainly in their thirties or \nearly forties, with a range of 12–78 years (23 studies pro -\nvided data) and a mean of 35 years (from 21 studies). The \nmean age at diagnosis was 27 years (8 studies), with a \nmean diagnostic delay of 8.5 years (8 studies) and mean \nage for onset of symptoms 17 years old (2 studies). Ethnic \ndiversity was purposively sampled in just one study [56]; \nwhere ethnicity was reported, there was a general lack of \ndiversity, but this was rarely commented on (one excep -\ntion was Cole et al. [57]) (Table 1).\nQuality assessment\nInformation collected using the combined COREQ/CASP \nform is provided in full in Additional files, Table  4, and \nsummarized here. Interviewers identified themselves as \nacademics, students, psychologists or nurses, although \nabout half the studies provided no information, and few \ndescribed any training in interviewing. Twenty studies (see \nAdditional files Table 4) employed only female interview-\ners, one used both male and female, and one only male [59]; \nthe remainder did not specify the sex of the interviewer/s. \nFive researchers identified themselves in their publica -\ntion as having endometriosis [57, 60, 61, 64, 67], but it is \nnot clear whether that information was shared with their \ninterviewees, making it hard to estimate how it might have \naffected data. Two studies reflected on whether character-\nistics of the interviewer/s might have biased recruitment or \ninterview content, one [57] in relation to ethnicity, declar-\ning interviewers to be white academics, and the other [81] \nin terms of sociodemographic characteristics. Seven fur -\nther studies included reflexive comments on the research-\ners, and six more a very limited statement; others provided \nnone, despite the convention of qualitative researchers \nattempting to be transparent about possible biases brought \nto their data.\nFour studies described their methods only as quali -\ntative; the remainder elaborated, either identifying a \n\nPage 6 of 16de C Williams and McGrigor  BMC Women’s Health           (2024) 24:50 \nTable 1 Characteristics of qualitative studies\nAuthor Title Year Research focus Recruitment Sample size Data Collection Method\nBento & Moreira [58] Quando os olhos não veem o \nque as mulheres sentem: a dor \nnas narrativas de mulheres \ncom endometriose\n2018 Pain Community - Internet support \ngroups\n20 Interview\nBoersen et al. [59] Patients’ perspective on cogni-\ntive behavioural therapy \nafter surgical treatment \nof endometriosis: a qualitative \nstudy\n2021 CBT Clinical - from a referral centre \nfor endometriosis -\n17, in 5 focus groups Focus groups\nBullo & Hearne [60] Parallel worlds and personi-\nfied pain: A mixed methods \nanalysis of pain metaphor use \nby women with endometriosis\n2021 Language Community - self-selecting, advert \non social media\n21 Interview\nClark [61] Experiences of women \nwith endometriosis: An Inter-\npretative Phenomenological \nAnalysis.\n2012 General experience Community - Endometriosis UK \nsupport groups, and adverts in local \nareas\n13 Interview\nCole et al. [57] “The most lonely condition \nI can imagine”: Psychosocial \nimpacts of endometriosis \non women’s identity\n2020 Identity Community- online - advertised \nthrough charity\n34 Open written response\nCox et al. [62] Focus group study of endo-\nmetriosis:\nStruggle, loss and the medical \nmerry-go-round\n2003 Experiences of endometriosis \nand laparoscopy\nClinical - patients of specialist unit \ninvited\n61 in 5 focus groups Focus group, interview, survey\nDenny [63] Women’s experience of endo-\nmetriosis\n2004 Living with endometriosis Community and clinical - online \nmessage board, snowball\n15 Interview\nDi Biasi [64] The meaning of endometrio-\nsis to females experiencing \nthe disease\n1995 Living with endometriosis \n(specifically for nurses)\nCommunity - advertised \nthrough charity and support group\n33 Open written response\nDi-benedetti [65] Patients’ perspectives of endo-\nmetriosis related fatigue: \nqualitative interviews\n2020 Fatigue Clinical - medical recruitment \ncompany\n22 Interview\nDrabble et al. [66] Constellations of pain: a quali-\ntative study of the complexity \nof women’s endometriosis-\nrelated pain\n2021 Complexity of pain experience Community - support groups, \nFacebook, snowball\n20 Interview\nEastwood [67] Endometriosis: Medical Del-\negitimation and the\nReconstruction of Narrative \nIdentity\n2005 Living with endometriosis – \nsocial\nCommunity - advert in newspaper 35 Open written response\n\nPage 7 of 16\nde C Williams and McGrigor  BMC Women’s Health           (2024) 24:50 \n \nTable 1 (continued)\nAuthor Title Year Research focus Recruitment Sample size Data Collection Method\nGater et al. [68] Development and con-\ntent validation of two new \npatient-reported outcome \nmeasures for endometriosis: \nthe Endometriosis Symptom \nDiary (ESD) and Endometriosis \nImpact Scale (EIS)\n2020 Development of research tools Clinical - referrals from treating \nphysicians\n45 Interview\nGuan et al. [69] The endometriosis daily diary: \nqualitative research to explore \nthe patient experience \nof endometriosis and inform \nthe development of a patient-\nreported outcome (PRO) \nfor endometriosis-related pain\n2022 Development of research tools Clinical - recruitment agency - refer-\nrals from medical professions\n30 Interview\nHållstam et al. [70] Living with painful endome-\ntriosis – A struggle for coher-\nence. A qualitative study\n2018 Pain Clinical - pain clinic 13 Interview\nHudson et al. [56] Endometriosis: improving \nthe wellbeing of couples\n2013 Experience of partner/couples Community and Clinical - sup-\nport groups, hospital clinics, word \nof mouth\n22 interview\nHunting-don & Gilmour [71] A life shaped by pain: women \nand endometriosis\n2005 Living with endometriosis \n(nursing literature)\nCommunity - support group 18 interview\nJaeger et al. [72] “A little monster inside me \nthat comes out now \nand again”: endometriosis \nand pain in Austria\n2022 Living with endometriosis, \nparticular focus on pain\nCommunity - outpatient clinic \nattendees\n10 interview\nJones et al. [73] The impact of endometriosis \nupon quality of life: a qualita-\ntive analysis\n2004 Living with endometriosis – \nimpact on quality of life\nClinical - online advert, Facebook, \nsnowball\n24 interview\nMander-son et al. [74] Circuit Breaking: Pathways \nof Treatment Seeking \nfor Women With Endometrio-\nsis in Australia\n2008 Diagnosis Community - from a larger study, \nalso newspapers and noticeboards \nand snowball\n40 interview\nMárki et al. [75] Challenges of and possible \nsolutions for living with endo-\nmetriosis: a qualitative study\n2022 General experience Clinical - from a larger study 21 Focus groups\nMarkovic et al. [76] Endurance and contest: \nwomen’s narratives of Endo-\nmetriosis\n2008 Illness narratives Clinical - from a larger study 30 interview\nMatias-Gonzales et al. [77] “Es que tú eres una changa”: \nstigma experience\n2021 Stigmatisation/taboo Community - flyers 50 (10–12 per focus \ngroups)\nFocus groups\n\nPage 8 of 16de C Williams and McGrigor  BMC Women’s Health           (2024) 24:50 \nTable 1 (continued)\nAuthor Title Year Research focus Recruitment Sample size Data Collection Method\nMellado et al. [78] Social isolation in women \nwith endometriosis \nand chronic pelvic pain\n2015 Social isolation Clinical - patients at a clinic 29 Focus groups\nMoradi et al. [79] Impact of endometriosis \non women’s lives: a qualitative \nstudy\n2014 General experience (across \ndifferent ages)\nClinical and community - endo-\nmetriosis centre, also informa-\ntion night, & recommendations \nfrom a doctor\n35 Focus groups\nOlliges et al. [80] The Physical, Psychological, \nand Social Day-to-Day Experi-\nence of Women Living With \nEndometriosis Compared \nto Healthy Age-Matched \nControls—A Mixed-Methods \nStud\n2021 Experience across the men-\nstrual cycle\nClinical - outpatient centres 12 endometri-osis \npatients, 11 age-\nmatched healthy \ncontrols\ninterview\nOsborne [81] The effects of symptomatic \nendometriosis on woman-\nhood\n2008 Identity/womanhood Clinical through clinic and outpa-\ntients - identified by doctor\n7 (response rate 50%) interview\nRea et al. [82] Living with endometriosis: \na phenomenological study\n2020 General experience Clinical - identified by doctor/\nhealthcare providers\n25 (data saturation \nachieved)\ninterview\nRiazi et al. [53] Patients’ and physicians’ \ndescriptions of occurrence \nand diagnosis of endome-\ntriosis: a qualitative study \nfrom Iran\n2014 Diagnosis Clinical - at a hospital 6 gynaeco-logists, 12 \npatients\ninterview\nRowe et al. [53] Improving clinical care \nfor women with endome-\ntriosis: qualitative analysis \nof women’s and health profes-\nsionals’ views\n2021 Compare women’s percep-\ntions of healthcare with health \nprofessionals’\nCommunity - advertisements \non Facebook\n46 women, 13 health \nprofess-ionals\ncombination of focus group \nand open written response \n- questions posted online, \nrecorded, prompts and addi-\ntional questions\nSilva et al. [83] Experiences of women regard-\ning their pathways to the diag-\nnosis of endometriosis\n2021 Diagnosis Community - recruited online sup-\nport groups, adverts\n10 interview\nVarney [84] Women’s experiences of endo-\nmetriosis: Qualitative explora-\ntions of psychological support, \nand interactions with health-\ncare professionals\n2020 General experience – \nwith focus on support systems\nClinical - identified by healthcare \nworkers\n15 (5 withdrew prior \nto interviews - reasons \ngiven)\ninterview\nZale et al. [55] Shedding light on endome-\ntriosis: Patient and provider \nperspectives on a challenging \ndisease\n2019 General experience – compar-\nison of healthcare providers \nand patients\nCommunity - recruitment flyer \non social media pages of endo \norganisation\n4 providers, 12 patients interview\n\nPage 9 of 16\nde C Williams and McGrigor  BMC Women’s Health           (2024) 24:50 \n \nTable 1 (continued)\nAuthor Title Year Research focus Recruitment Sample size Data Collection Method\nZarbo et al. [28] Cognitive and Personality \nFactors Implicated in Pain \nExperience in Women With \nEndometriosis: A mixed \nmethod study\n2019 Links between experience \nof pain and psychological/\ncognitive factors\nClinical - from larger study 6 interview\n\nPage 10 of 16de C Williams and McGrigor  BMC Women’s Health           (2024) 24:50 \nmethod (such as discourse analysis, or thematic analysis) \nor an epistemological stance, or both. The most common \naim was to describe women’s experience of living with \nendometriosis (14 studies), including its social impact; \nthe next most common was studies of assessment tools \nor trajectories of diagnosis and treatment (8 studies); \nthere were 7 studies of meaning and identity; two of lan -\nguage use; and one each of stigma and of fatigue.\nThematic synthesis\nCoding of content of results and discussion, both directly \nreported participant comments and those of the research-\ners, provided 188 initial codes, which were then grouped \nand named as far as possible using quoted phrases from \nthe studies. Further grouping produced five themes con -\ncerned with the internal experience of having endometri-\nosis; two themes about interface with the external world; \ntwo concerned with effects on interpersonal and social \nlife, and one (in three parts) with encounters with medical \ncare (see Fig. 2).\nInternal experience of endometriosis\nPain‑endometriosis affects every aspect of life This \ntheme addressed the impact of both endometriosis symp-\ntoms and pain on all areas of life, loss of identity, of free -\ndom, and of imagined future. It shared several codes with \nEmotional components and consequences of pain and \nendometriosis. There was a minor positive component, \nalthough this may have been elicited mainly by research -\ners’ questions about positive aspects.\nEndometriosis pain is different The sense of difference \nfrom normal menstrual pain was widely emphasized, \nperhaps because so many women had historically had \ntheir early symptoms dismissed as “just period pain” , and \nperhaps because interviewers were almost always women \nwho would be expected to have experience of dysmenor -\nrhea. Pain was described as qualitatively and quantita -\ntively different, often in very powerful terms, and again \nthis shared several codes with Emotional components and \nconsequences of pain and endometriosis.\nEndometriosis affects my body beyond pain This theme \nparticularly concerned unpredictable bleeding, in tim -\ning or quantity; effects on the bowel, bladder, appetite, \nenergy and sleep, and comorbidities; and discomfort with \nsexual activity. Women described a relationship with \ntheir bodies that had changed for the worse.\nEmotional components and consequences of pain and \nendometriosis Self-doubt, anxiety, depression, and a \ngeneral sense of being unable to function adequately were \ncommonly reported, directly linked to the problems asso-\nciated with endometriosis and pain. Occasionally this was \nexpressed with some positive sense of managing it: “yes, \nit’s painful and yes, it’s awful, but you can live with it” .\nFears and worries about pain and endometriosis Because \nof our particular research question, we did not subsume \nthis under the previous theme, although that would have \nbeen possible. Fears and worries concerned infertility; \nworsening and recurrence with or without treatment, \nincluding the possibility of cancer developing; and con -\ncerns that daughters would also have endometriosis. \nCodes were mainly shared with Pain‑endometriosis affects \nevery aspect of life and Encounters with medical care.\nInterface with the external world\nSelf‑regulation of pain and endometriosis This theme con-\ncerned the ways in which women managed their endome-\ntriosis in order to be able to live a more normal life, from \n“hiding from the world” , to taking analgesics, planning care-\nfully, and building understanding of their condition. In that \nsense many contributions expressed some sense of achieve-\nment of controlling the impact of endometriosis.\nSocial regulation to manage pain and endometriosis This \ntheme expressed both the scepticism that others in par -\nticipants’ lives could understand their difficulties, and also \nhelp and support received from others in managing endo-\nmetriosis and pain.\nEffects on interpersonal and social life\nEndometriosis and pain affect close others There was a \nstrong sense, despite self- and social regulation, that family \nmembers were negatively affected by the woman’s endo -\nmetriosis, and in particular, romantic and sexual partners.\nEndometriosis and pain affect social life and work Related \nto the foregoing theme, and to attempts at social regula -\ntion, were many accounts of either avoiding socialising at \nspecific times or in general, and of having to take time off  \nwork or struggling to hide symptoms. There were a few \naccounts of friends and of work colleagues and structures \nbeing supportive.\nEncounters with medical care\nThis was a large theme, perhaps partly as a function of \nbeing the main research focus of several studies. It shared \nfew codes with other themes, and had three sub-themes. \n\nPage 11 of 16\nde C Williams and McGrigor  BMC Women’s Health           (2024) 24:50 \n \nThe first described the overall sense of being unpleasantly \nexposed by diagnostic and treatment procedures: “I think \nthey forget that you’re a person” . The second sub-theme \nportrayed diagnosis, often many years after the onset of \nsymptoms, as a turning point. Although most accounts \ndescribed negative experiences of the struggle for valida -\ntion and diagnosis, there was also a positive aspect when \nthis was achieved, as in, “I was devastated but relieved” . \nThe third sub-theme concerned disappointments with \ntreatment options and with limitations and disadvantages \nto what was offered, from contraceptives to encourage -\nment to have children as soon as possible, whatever the \nwoman’s situation. There were very few positive com -\nments on achieving some control through treatment.\nPsychological dimensions of endometriosis pain\nThe theme of Emotional components and consequences of \npain and endometriosis provided very familiar material \nfrom other studies of chronic pain, musculoskeletal, vis -\nceral and pelvic, or mixed [1, 14, 15, 23, 85, 86]. Since we \nare interested particularly in how well the psychological \nexperience of endometriosis pain fits the generic fear and \navoidance chronic pain model [86], we examine here in \nmore detail the content of the theme Fears and worries \nabout pain and endometriosis.\nThe commonest fears, from almost half the studies, con-\ncerned infertility. For younger women, this was anticipa -\ntion of being unable to conceive or being unable to sustain \na pregnancy; for older women, infertility was for many (but \nnot all) a significant loss, or for those who had children, con-\ncerns about infertility had interwoven in problematic ways \nboth with their treatment options and with their life plan-\nning, and some expressed disappointment that parity had \nnot resolved either pain or endometriosis as they had been \nled to expect. The next most common fear was of recurrence \n(12 studies) of endometriosis, of worsening following unsuc-\ncessful treatment (11 studies) or without (7 studies), and \nthese were linked to extreme pain (“you’d think you were \ndying”). This most closely resembled the overly negative \npredictions and associated distress described in the fear and \navoidance model. Two other sources of fear occurred in a \nhandful of studies each: of cancer (the diagnosis having been \nmissed, or developing in future), and of genetic transmission \nof endometriosis to daughters creating additional responsi-\nbilities for their mothers in trying to manage it effectively. \nNot evident in these studies was women’s fear of damage to \ntheir bodies during sexual activity, which unlike most other \nactivities that exacerbate pain (such as digestion, or defeca-\ntion) can be avoided. Attempts at control for such activities \nfocus rather on the emotional or social aspects.\nDiscussion\nTaking together the survey findings and the qualita -\ntive meta-synthesis, clear associations emerged between \nendometriosis pain, distress, and reduced quality of life, \nbut not strongly with any definitive psychological for -\nmulation of pain and related problems, nor with the \npredominant sense of threat that contributes to central \nsensitization [14]. In the only survey study in which an \nexplicit psychological model was used [41], that of fear \nand avoidance [86] and catastrophic thinking biases [52], \nsupport was found for its application, although method -\nology was somewhat weak (comparison with pain-free \npopulation, and avoidance not directly sampled). Several \nsurveys used outdated models of ‘somatization’ , somatic \nexpression of psychological distress, that constitute an \nunsatisfactory model of endometriosis. The qualitative \nsynthesis combined a relatively large number of studies; \nthey showed substantial common ground in the experi -\nences of women with painful endometriosis, across conti-\nnents, population samples, and research questions.\nNo previous review has combined women’s perspec -\ntives on the experience of endometriosis pain in such an \nopen-ended way. Our findings describe women’s sense of \nbeing let down by and alienated from their bodies, at the \nsame time as needing to attend to and attempt to regulate, \nor at least predict, their bodies’ vagaries, to function in the \noutside world, on a daily level, and on a level of life plans. \nFig. 2 Main themes and sub-themes\n\nPage 12 of 16de C Williams and McGrigor  BMC Women’s Health           (2024) 24:50 \nThis uses normal rather than psychopathological terms in \na coherent framework that combines findings of various \nother reviews, and is entirely compatible with central sen-\nsitization maintaining pain whatever the level of disease [3].\nA narrative synthesis of qualitative, quantitative, and \nmixed method studies [1 ] described concerns of women \nwith endometriosis about fertility and planning and hav -\ning children, medical management, information and sup -\nport, emotional distress (although without any description \nof anxieties), and feelings of powerlessness. A more recent \nsystematic review [27] of nine quantitative and qualita -\ntive studies reported few differences between women with \nendometriosis pain and people with other chronic pains in \nmetacognitions, including ‘catastrophic thinking’ , and cop-\ning strategies, noting that more emotion-focused coping \nand avoidance was associated with poorer mental health. \nSimilar findings are reported in a recent review that dis -\ntinguished ‘catastrophic thinking’ as the main predictor of \npain intensity from anxiety, depression and stress, associ-\nated with poorer quality of life [4]. A thematic synthesis by \nYoung et al. [26] noted the gaps in the study of emotional \nand social wellbeing, and recent studies go some way \ntowards filling this gap [19]. Many reviews of endometriosis \nnote its deleterious effects on quality of life (e.g. [87]), and a \nfew link this directly to pain [16] and, therefore, to the need \nfor psychological support or treatment [88–90].\nLimitations & strengths\nOur search was broad and not limited to English lan -\nguage papers, although to those abstracted in Eng -\nlish. Nevertheless, there are likely to be studies of \nendometriosis and associated problems inaccessible to \nour searches, narrowing the cultural range of studies, and \nwe did not screen references of eligible studies for any \nmissed by the search strategy. Two papers focused pre -\ndominantly on fertility problems, from Iran and Brazil \n[53, 83]. We focused only on the experience of women; \nthere is a substantial research literature on the experience \nof their sexual partners which we excluded. We anno -\ntated the studies using a previously untried combination \nof two established (and somewhat overlapping) scales; \nthis may have increased the arbitrariness of what is taken \nas a marker of ‘quality’ , and contributed to our decision \nnot to assign scores to annotations. We were interested \nparticularly in the extent to which researchers intention -\nally or unintentionally elicited particularly content in \ninterviews, but reporting of most studies, even the small \nminority with a reflexive statement, did not comment on \nthis except in the case of a male interviewer [59, 78]. It is \nhard to summarize quality other than with the narrative \nprovided. We did not double-code and double-rate stud -\nies, relying instead on doing so for a sample and proceed-\ning with frequent discussion and consensus, but ideally \na larger team would have worked on this review [91]. \nFinally, the survey data were hard to interpret given that \nmany respondents were self-diagnosed; we have there -\nfore commented more on survey authors’ models than \non their outcomes, nor did we attempt any quantitative \nanalyses.\nClinical and research implications\nMany studies recommended better education about \nendometriosis for clinicians, emphasizing, in particular, \nthe role of nurses in providing information to patients. \nWe would hope that such education fully integrated the \nproblem of pain and involved all relevant healthcare pro -\nfessionals; our search returned many qualitative studies \nof women’s experience with endometriosis where pelvic \npain was barely addressed, or was represented as one \nsymptom among many, disregarding the extent to which \npain itself is a significant cause of distress and difficulty \nmanaging everyday life (see [12, 29]), requiring attention \nand efforts to mitigate pain in its own right, not just sec -\nondarily to treatment of endometriosis.\nThere is a broader need for psychological care to be \nbetter integrated into health services for many diagnos -\nable conditions, including endometriosis. Although we \nfound some common ground for understanding psycho -\nlogical problems that can be extrapolated from chronic \npain in general, the focus on fear of physical damage and \navoidance of physical demands predominant in some \npsychological interventions is not supported by our find -\nings. Although it is too early in these explorations to sug -\ngest specific psychological interventions, information \nand support, not least from other women with endome -\ntriosis and resources created and maintained by them, \nmay meet most needs, with skilled psychological inter -\nvention for those women who are more distressed and \nlimited by their pain. Discussion with a clinical special -\nist about attention to symptoms and when to seek expert \nhealthcare can support self-management in women con -\ncerned about recurrence of adhesions; discussion about \npossible triggers and systematic ways to test them can be \nhelpful to those seeking greater control. Multimodal pain \nmanagement interventions based in psychological under-\nstanding are widely recommended for chronic pain of all \nsorts (e.g. NICE [92]), but ideally is personalized to the \nparticular problems and priorities of the patient and rec -\nognition of specific concerns associated with the disease \nor type of pain [3].\nSeveral research gaps were noted by As-Sanie et  al. \n[93] at a US meeting of clinicians of various disciplines, \nwomen with endometriosis, researchers, and members \nfrom industry and government. Among them were the \nneed for mental health professionals attached to endo -\nmetriosis clinics; the contribution of physiotherapists \n\nPage 13 of 16\nde C Williams and McGrigor  BMC Women’s Health           (2024) 24:50 \n \nand others to pain-relieving strategies; the lack of accu -\nrate information on relief from different types of hys -\nterectomy, and on pain recurrence following surgery. A \npriority setting partnership in the UK included in the top \n10 priorities, alongside better and less invasive diagnosis \nand improved education of healthcare professionals, the \nneed to determine the most effective ways of managing \nthe emotional and psychological impact of living with \nendometriosis [94]. Both effective management and the \nmore routine involvement of mental health professionals \nproposed by As-Sanie and colleagues [93] require a better \nunderstanding of the content of women’s distress about \nendometriosis, and the particular areas of impact; this \nreview provides a step towards that understanding. There \nseems little need for repetition of descriptive studies of \nthe impact of endometriosis on women’s lives, given the \nnumber and breadth we found. We would recommend \ninvestigations with clearer theoretical roots in psychol -\nogy, particularly but not exclusively the psychology of \npain, to establish a solid basis for developing effective \npsychological interventions, with more of a focus than is \ncharacteristic of psychological models to issues of social \ndisclosure, difficulties in social situations, and stigma, \naffecting both work and personal social situations.\nConclusion\nEndometriosis has widespread impact on women: on \ntheir relationship with their bodies; their psychological \nand social wellbeing; and on life plans and lifestyle. This \nis similar to the situation of people with other chronic \npains, musculoskeletal, neuropathic, or visceral. How -\never, the dominant psychological model of pain, of fear \nof reinjury and increased pain from avoidable activ -\nity, resulting in disability, only partly fits the situation of \nwomen with endometriosis. Many factors that exacer -\nbate pain cannot be avoided, nor is there evidence of an \noverarching fear of physical demands (of everyday life or \nvalued activities) threatening bodily integrity. The psy -\nchological component of endometriosis pain requires \nfurther exploration with the aim of building psychologi -\ncal models that can underpin targeted interventions for \ndistress and social withdrawal.\nSupplementary Information\nThe online version contains supplementary material available at https:// doi. \norg/ 10. 1186/ s12905- 023- 02874-3.\nAdditional file 1. \nAdditional file 2. \nAcknowledgements\nOur funding is from the Advanced Pain Discovery Platform, funded by the \nMRC, Versus Arthritis, ESRC, BBSRC, Medical Research Foundation, Astra \nZeneca, and EliLilly: Grant Reference No. MR/W002426/1; Primary Investigator \nProfessor Geoff Woods, University of Cambridge.\nWe are very grateful for discussion of methodology and initial analysis to \nKate Seers, Professor of Health Research and Director of Warwick Research in \nNursing, Warwick University; for comments on previous drafts from Emma \nCox, CEO of Endometriosis UK; Katrine Petersen, Advanced Physiotherapy \nPractitioner and Specialist in Chronic Abdomino-Pelvic Pain Management, \nUniversity College London Hospitals, London UK; from Prof Andrew Horne, \nProfessor of Gynaecology and Reproductive Sciences, University of Edinburgh; \nand from Dr Federica La Russa.\nAuthors’ contributions\nHM prepared and conducted the search, scanned all titles and abstracts, \nselected full texts for inclusion, rated all included studies, prepared tables \n(including additional files) and figure, drafted the Methods, and commented \non all parts of the paper.\nAW sampled each of the search and selection above, including full reading \nof included and excluded studies, did several sample ratings (as described \nin paper), drafted the paper other than Methods, obtained opinions from \ncolleagues named in Acknowledgements, and completed the paper for \nsubmission.\nDeclarations\nConsent for publication not applicable\nThe coding frames used during the current study are available from the cor-\nresponding author on reasonable request. All other information is provided in \nadditional files.\nEthics approval and consent to participate\nNot applicable (review).\nCompeting interests\nThe authors declare no competing interests.\nReceived: 29 May 2023   Accepted: 28 December 2023\n References\n 1. Culley L, Law C, Hudson N, Denny E, Mitchell H, Baumgarten M, \nRaine-Fenning N. The social and psychological impact of endometrio-\nsis on women’s lives: a critical narrative review. Hum Reprod Update. \n2013;19(6):625–39.\n 2. Shafrir AL, Farland LV, Shah DK, Harris HR, Kvaskoff M, Zondervan K, \nMissmer SA. Risk for and consequences of endometriosis: a critical epide-\nmiologic review. Best Pract Res Clin Obstet Gynaecol. 2018;51:1–15.\n 3. Horne AW, Missmer SA. Pathophysiology, diagnosis, and management of \nendometriosis. BMJ. 2022;379:e070750. https:// doi. org/ 10. 1136/ bmj20 \n22070 750.\n 4. Kalfas M, Chisari C, Windgassen S. Psychosocial factors associated with \npain and health-related quality of life in endometriosis: a systematic \nreview. Eur J Pain. 2022;26(9):1827–48.\n 5. Denny E, Mann CH. A clinical overview of endometriosis: a misunder-\nstood disease. Br J Nurs. 2007;16(18):1110–61.\n 6. Fauconnier A, Staraci S, Huchon C, Roman H, Panel P , Descamps P . Com-\nparison of patient- and physician- based descriptions of symptoms of \nendometriosis: a qualitative study. Hum Reprod. 2013;28(10):2686–94.\n 7. Aredo JV, Heyrana KJ, Karp BI, Shah JP , Stratton P . Relating chronic pelvic \npain and endometriosis to signs of sensitization and myofascial pain and \ndysfunction. Semin Reprod Med. 2017;35(1):88–97.\n 8. Sinaii N, Cleary SD, Ballweg ML, Nieman LK, Stratton P . High rates of \nautoimmune and endocrine disorders, fibromyalgia, chronic fatigue syn-\ndrome and atopic diseases among women with endometriosis: a survey \nanalysis. Hum Reprod. 2002;17(10):2715–24.\n 9. Pettersson A, Berterö CM. How women with endometriosis experience \nhealth care encounters. Womens Health Rep. 2020;1(10):529–42.\n\nPage 14 of 16de C Williams and McGrigor  BMC Women’s Health           (2024) 24:50 \n 10. Van der Zanden M, de Kok L, Nelen WLDM, Braat DDM, Nap AW. Strengths \nand weaknesses in the diagnostic process of endometriosis from the \npatients’ perspective: a focus group study. Diagnosis. 2021;8(3):333–9.\n 11. Clauw DJ, Essex MN, Pitman V, Jones KD. Reframing chronic pain as a dis-\nease, not a symptom: rationale and implications for pain management. \nPostgrad Med. 2019;131(3):185–98.\n 12. Stratton P , Berkley KJ. Chronic pelvic pain and endometriosis: translational \nevidence of the relationship and implications. Hum Reprod Update. \n2011;17(3):327–46.\n 13. Hansen S, Sverrisdóttir UA, Rudnicki M. Impact of exercise on pain per-\nception in women with endometriosis: a systematic review. Acta Obstet \nGynecol Scand. 2021;100(9):1595–601.\n 14. Crombez G, Eccleston C, Van Damme S, Vlaeyen JWS, Karoly P . Fear-\navoidance model of chronic pain: the next generation. Clin J Pain. \n2012;28(6):475–83.\n 15. Toye F, Seers K, Hannink E, Barker K. A mega-ethnography of eleven quali-\ntative evidence syntheses exploring the experience of living with chronic \nnon-malignant pain. BMC Med Res Methodol. 2017;17(1):116.\n 16. Van Barneveld E, Manders J, van Osch FHM, van Poll M, Visser L, van \nHanegem N, et al. Depression, anxiety, and correlating factors in endo-\nmetriosis: a systematic review and meta-analysis. J Women’s Health. \n2022;31(2):219–30.\n 17. Toye F, Seers K, Barker K. A meta-ethnography of patients’ experiences of \nchronic pelvic pain: struggling to construct chronic pelvic pain as ‘real’ . J \nAdv Nurs. 2014;70(13):2713–27.\n 18. Della Corte L, Di Filippo C, Gabrielli O, Reppuccia S, La Rosa VL, Ragusa \nR, et al. The burden of endometriosis on women’s lifespan: a narrative \noverview on quality of life and psychosocial wellbeing. Int J Environ Res \nPublic Health. 2020;17(13):4683.\n 19. Sims OT, Gupta J, Missmer SA, Aninye IO. Stigma and endometriosis: \na brief overview and recommendations to improve psychosocial \nwell-being and diagnostic delay. Int J Environ Res Public Health. \n2021;18(15):8120.\n 20. Rush G, Misajon R. Examining subjective wellbeing and health-related \nquality of life in women with endometriosis. Health Care Women Int. \n2017;39(3):303–21.\n 21. Duffy J, Hirsch M, Vercoe M, Abbott J, Barker C, Collura B, et al. A core out-\ncome set for future endometriosis research: an international consensus \ndevelopment study. BJOG. 2020;127(8):967–74.\n 22. Vlaeyen JWS, Linton SJ. Fear-avoidance and its consequences in chronic \nmusculoskeletal pain: a state of the art. Pain. 2000;85(3):317–32.\n 23. Rogers AH, Farris SG. A meta-analysis of the associations of elements \nof the fear-avoidance model of chronic pain with negative affect, \ndepression, anxiety, pain-related disability and pain intensity. Eur J Pain. \n2022;26(8):1611–35.\n 24. Peveler R, Edwards J, Daddow J, Thomas E. Psychosocial factors and \nchronic pelvic pain: a comparison of women with endometriosis and \nwith unexplained pain. J Psychosom Res. 1996;40(3):305–15.\n 25. Kellner R, Slocumb JC, Rosenfeld RC, Pathak D. Fears and beliefs \nin patients with the pelvic pain syndrome. J Psychosom Res. \n1988;32(3):303–10.\n 26. Young K, Fisher J, Kirkman M. Women’s experiences of endometriosis: \na systematic review and synthesis of qualitative research. J Fam Plann \nReprod Health Care. 2015;41(3):225–34.\n 27. Zarbo C, Brugnera A, Frigerio L, Malandrino C, Rabboni M, Bondi E, et al. \nBehavioural, cognitive, and emotional coping strategies of women with \nendometriosis: a critical narrative review. Arch Womens Ment Health. \n2018;21(1):1–13.\n 28. Zarbo C, Brugnera A, Dessì V, Barbetta P , Candeloro I, Secomandi R, \net al. Cognitive and personality factors implicated in pain experience \nin women with endometriosis: a mixed-method study. Clin J Pain. \n2019;35(12):948–57.\n 29. Brasil DL, Montagna E, Trevisan CM, La Rosa VL, Laganà AS, Barbosa CP \net al. Psychological stress levels in women with endometriosis: system-\natic review and meta-analysis of observational studies. Minerva Med. \n2020;111(1):90–102.\n 30. Thomas J, Harden A. Cochrane Training. In: Thematic Synthesis – Part 1: \nThematic synthesis: an overview of its use and features; 2022. https:// \nwww. youtu be. com/ watch?v= JheRB pXYXC 8&t= 4s, Accessed 26th Mar \n2023.\n 31. Tong A, Flemming K, McInnes E, Oliver S, Craig J. Enhancing transparency \nin reporting the synthesis of qualitative research: ENTREQ. BMC Med Res \nMethodol. 2012;12:181. http:// www. biome dcent ral. com/ 1471- 2288/ 12/ \n181\n 32. Booth A, Noyes J, Flemming K, Gehardus A, Wahlster P , van der Wilt GJ, \net al. Structured methodology review identified seven (RETREAT) criteria \nfor selecting qualitative evidence synthesis approaches. J Clin Epidemiol. \n2018;99:41–52. https:// doi. org/ 10. 1016/j. jclin epi. 2018. 03. 003.\n 33. Thomas J, Harden A. Methods for the thematic synthesis of qualita-\ntive research in systematic reviews. BMC Med Res Methodol. 2008;8:45. \nhttps:// doi. org/ 10. 1186/ 1471- 2288-8- 45.\n 34. Bień A, Rzońca E, Zarajczyk M, Wilkosz K, Wdowiak A, Iwanowicz-Palus \nG. Quality of life in women with endometriosis: a cross-sectional survey. \nQual Life Res. 2020;29(10):2669–77.\n 35. Giuliani M, Cosmi V, Pierleoni L, Recine A, Pieroni M, Ticino A, et al. Quality \nof life and sexual satisfaction in women suffering from endometriosis: an \nItalian preliminary study. Sexologies: European journal of sexology and \nsexual. Health. 2015;25(1):e12–9.\n 36. Leuenberger J, Schwartz ASK, Geraedts K, Haeberlin F, Eberhard M, \nvon Orellie S, et al. Living with endometriosis: comorbid pain dis-\norders, characteristics of pain and relevance for daily life. Eur J Pain. \n2022;26(5):1021–38.\n 37. Márki G, Bokor A, Rigó J, Rigó A. Physical pain and emotion regulation \nas the main predictive factors of health-related quality of life in women \nliving with endometriosis. Hum Reprod. 2017;32(7):1432–8.\n 38. de Farias Rodrigues MP , Vilarino FL, Munhoz ASB, da Silva PL, de Alcantara \nSousa LV, Zaia V, et al. Clinical aspects and the quality of life among \nwomen with endometriosis and infertility: a cross-sectional study. BMC \nWomens Health. 2020;20(1):124.\n 39. Schneider MP , Vitonis AF, Fadayomi AB, Charlton BM, Missmer SA, DiVasta \nAD. Quality of life in adolescent and Young adult women with dyspareu-\nnia and endometriosis. J Adolesc Health. 2020;67(4):557–61.\n 40. Soliman AM, Rahal Y, Robert C, Defoy I, Nisbet P , Lyland N, et al. \nImpact of endometriosis on fatigue and productivity impairment in \na cross-sectional survey of Canadian women. J Obstet Gynaecol Can. \n2021;43(1):10–8.\n 41. Van Aken MAW, Oosterman JM, van Rijn CM, Ferdek MA, Ruigt GSF, \nPeeters BWMM, et al. Pain cognition versus pain intensity in patients \nwith endometriosis: toward personalized treatment. Fertil Steril. \n2017;108(4):679–86.\n 42. Vannuccini S, Lazzeri L, Orlandini C, Morgante G, Bifulco G, Fagiolini \nA, et al. Mental health, pain symptoms and systemic comorbidities in \nwomen with endometriosis: a cross-sectional study. J Psychosom Obstet \nGynaecol. 2018;39(4):315–20. https:// doi. org/ 10. 1080/ 01674 82X. 2017. \n13861 71.\n 43. Warzecha D, Szymusik I, Wielgos M, Pietrzak B. The impact of endometrio-\nsis on the quality of life and the incidence of depression—a cohort study. \nInt J Environ Res Public Health. 2020;17(10):3641.\n 44. Roomaney R, Kagee A, Heylen S. Biopsychosocial predictors of symptoms \nof depression in a sample of south African women diagnosed with endo-\nmetriosis. Health Care Women Int. 2019;41(3):308–29.\n 45. Evans S, Mikocka-Walus A, Olive L, Seidman LC, Druitt M, Payne LA. \nPhenotypes of women with and without endometriosis and relationship \nwith functional pain disability. Pain Med. 2021;22(7):1511–21.\n 46. Grundström H, Gerdle B, Alehagen S, Berterö C, Arendt-Nielsen L, \nKjølhede P . Reduced pain thresholds and signs of sensitization in women \nwith persistent pelvic pain and suspected endometriosis. Acta Obstet \nGynecol Scand. 2018;98(3):327–36.\n 47. Soliman AM, Coyne KS, Zaiser E, Castelli-Haley J, Fuldeore MJ. The burden \nof endometriosis symptoms on health-related quality of life in women in \nthe United States: a cross-sectional study. J Psychosom Obstet Gynaecol. \n2017;38(4):238–48. https:// doi. org/ 10. 1080/ 01674 82X. 2017. 12895 12.\n 48. Sullivan-Myers C, Sherman KA, Beath AP , Duckworth TJ, Cooper MJW. \nDelineating sociodemographic, medical and quality of life factors associ-\nated with psychological distress in individuals with endometriosis. Hum \nReprod. 2021;36(8):2170–80.\n 49. Van Niekerk L, Johnstone L, Matthewson M. Health-related quality of life \nin endometriosis: the influence of endometriosis-related symptom pres-\nence and distress. J Health Psychol. 2022a;27(14):3121–35.\n\nPage 15 of 16\nde C Williams and McGrigor  BMC Women’s Health           (2024) 24:50 \n \n 50. Van Niekerk L, Johnstone L, Matthewson M. Predictors of self-compassion \nin endometriosis: the role of psychological health and endometriosis \nsymptom burden. Hum Reprod. 2022b;37(2):264–73.\n 51. Lethem J, Slade PD, Troup JD, Bentley G. Outline of a fear-avoid-\nance model of exaggerated pain perception-I. Behav Res Ther. \n1983;21(4):401–8.\n 52. Sullivan MJL, Bishop SR, Jayne P . The pain catastrophizing scale: develop-\nment and validation. Psychol Assess. 1995;7(4):524–32.\n 53. Riazi H, Tehranian N, Ziaei S, Mohammadi E, Hajizadeh E, Montazeri \nA. Patients’ and physicians’ descriptions of occurrence and diagnosis \nof endometriosis: a qualitative study from Iran. BMC Womens Health. \n2014;14:103.\n 54. Rowe HJ, Hammarberg K, Dwyer S, Camilleri R, Fisher JRW. Improv-\ning clinical care for women with endometriosis: qualitative analysis of \nwomen’s and health professionals’ views. J Psychosom Obstet Gynaecol. \n2021;42(3):174–80.\n 55. Zale M, Lambert E, LaNoue MD, Leader AE. Shedding light on endome-\ntriosis: patient and provider perspectives on a challenging disease. J \nEndometr Pelvic Pain Disord. 2020;12(2):69–76.\n 56. Hudson N, Mitchell H, et al. Endometriosis: improving the wellbeing \nof couples: summary report and recommendations. UK Economic and \nSocial Research Council. Leicester: De Montfort University; 2013. https:// \nwww. pelvi cpain. org. uk/ wp- conte nt/ uploa ds/ 2018/ 07/ Endop art- study- \nsumma ry- report- and- recom menda tions. pdf. Accessed 26 Mar 2023\n 57. Cole JM, Grogan S, Turley E. “The most lonely condition I can imagine”: \nPyschosocial impacts of endometriosis on women’s identity. Fem Psychol. \n2020;31(2):171–91.\n 58. Bento PASS, Moreira MCN. When the eyes do not see what women feel: \npain in the narratives of women with endometriosis. Physis [online]. \n2018;28:3–e280309.\n 59. Boersen Z, de Kok L, van der Zanden M, Braat D, Oosterman J, Nap A. \nPatients’ perspective on cognitive behavioural therapy after surgical \ntreatment of endometriosis: a qualitative study. Reprod BioMed Online. \n2021;42(5):819–25.\n 60. Bullo S, Hearn JH. Parallel worlds and personified pain: a mixed-methods \nanalysis of pain metaphor use by women with endometriosis. Br J Health \nPsychol. 2021;26(6):271–88.\n 61. Clark M. Experiences of women with endometriosis: An Interpretative \nPhenomenological Analysis. [Doctoral thesis]. Edinburgh (UK): Queen \nMargaret University; 2012. Available from: https:// erese arch. qmu. ac. uk/ \nhandle/ 20. 500. 12289/ 7722 [Accessed 27th March 2023]\n 62. Cox H, Henderson L, Andersen N, Cagliarini G, Ski C. Focus group study of \nendometriosis: struggle, loss and the medical merry-go-round. Int J Nurs \nPract. 2003;9(1):2–9.\n 63. Denny E. Women’s experience of endometriosis. J Adv Nurs. \n2004;46(6):641–8.\n 64. Di Biasi ES. The meaning of endometriosis to females experiencing the \ndisease. [Doctor of Philosophy Thesis]. New York (USA): Adelphi Univer-\nsity; 1995.\n 65. DiBenedetti D, Soliman AM, Gupta C, Surrey ES. Patients’ perspectives \nof endometriosis-related fatigue: qualitative interviews. J Patient Rep \nOutcomes. 2020;4:e33.\n 66. Drabble SJ, Long J, Alele B, O’Cathain A. Constellations of pain: a qualita-\ntive study of the complexity of women’s endometriosis-related pain. Br J \nPain. 2021;15(3):345–56.\n 67. Eastwood CA. Endometriosis: medical Delegitimation and the reconstruc-\ntion of narrative identity. [Doctor of Philosophy Thesis]. Middlesbrough \n(UK): University of Teesside; 2005.\n 68. Gater A, Taylor F, Seitz C, Gerlinger C, Wichmann K, Haberland C. Develop-\nment and content validation of two new patient-repoted outcome \nmeasures for endometriosis: the endometriosis symptom diary (ESD) and \nendometriosis impact scale (EIS). J Patient Rep Outcomes. 2020;4(1):13.\n 69. Guan Y, Nguyen AM, Wratten S, Randhawa S, Weaver J, Arbelaez F, \nFauconnier A, Panter C. The endometriosis daily diary: qualitative research \nto explore the patient experience of endometriosis and inform the devel-\nopment of a patient-reported outcome (PRO) for endometriosis-related \npain. J Patient Rep Outcomes. 2022;6(1):5.\n 70. Hållstam A, Stålnacke BM, Svensén C, Löfgren M. Living with painful \nendometriosis – a struggle for coherence. A qualitative study. Sex Reprod \nHealth. 2018;17:97–102.\n 71. Huntington A, Gilmour JA. A life shaped by pain: women and endome-\ntriosis. J Clin Nurs. 2005;14(9):1124–32.\n 72. Jaeger M, Gstoettner M, Fleischanderl I. “A little monster inside me that \ncomes out now and again”: endometriosis and pain in Austria. Cad Saude \nPublica. 2022;38(2):e00226320.\n 73. Jones G, Jenkinson C, Kennedy S. The impact of endometriosis upon \nquality of life: a qualitative analysis. J Psychosom Obstet Gynaecol. \n2004;25(2):123–33.\n 74. Manderson L, Warren N, Markovic M. Circuit breaking: pathways of treat-\nment seeking for women with endometriosis in Australia. Qual Health \nRes. 2008;18(4):522–34.\n 75. Márki G, Vásárhelyi D, Rigó A, Kaló Z, Ács N, Bokor A. Challenges of and \npossible solutions for living with endometriosis: a qualitative study. BMC \nWomens Health. 2022;22:20.\n 76. Markovic M, Manderson L, Warren N. Endurance and contest: women’s \nnarratives of endometriosis. Health. 2008;12(3):349–67.\n 77. Matías-González Y, Sánchez-Galarza AN, Flores-Caldera I, Rivera-Segarra \nE. \"Es que tú eres una changa\": stigma experiences among Latina \nwomen living with endometriosis. J Psychosom Obstet Gynaecol. \n2021;42(1):67–74.\n 78. Mellado BH, Falcone ACM, Poli-Neto OB, Silva JCRE, Noguiera AA, \nCandido-Dos-Reis FJ. Social isolation in women with endometriosis and \nchronic pelvic pain. Int J Gynaecol Obstet. 2016;133(2):199–201.\n 79. Moradi M, Parker M, Sneddon A, Lopez V, Ellwood D. Impact of endo-\nmetriosis on women’s lives: a qualitative study. BMC Womens Health. \n2014;14:123.\n 80. Olliges E, Bobinger A, Weber A, Hoffmann V, Schmitz T, Popovici RM, \nMeissner K. The physical, psychological and social day-to-day experience \nof women living with endometriosis compared to healthy age-matched \ncontrols – a mixed-methods study. Frontiers in global Women’s Health. \n2021;2\n 81. Osborne SF. The effects of symptomatic endometriosis on womanhood. \n[Doctorate Thesis]. Leicester (UK): University of Leicester; 2008. Available \nfrom: https:// figsh are. le. ac. uk/ artic les/ thesis/ The_ Effec ts_ of_ Sympt \nomatic_ Endom etrio sis_ on_ Woman hood/ 10098 332 [Accessed 27th \nMarch 2023]\n 82. Rea T, Giampaolino P , Simeone S, Pucciarelli G, Alvaro R, Guillari A. Living \nwith endometriosis: a phenomenological study. Int J Qual Stud Health \nWell Being. 2020;15:1.\n 83. Silva CM, da Cunha C, Neves KR, Mascarenhas VHA, Caroci-Becker A. \nExperiences of women regarding their pathways to the diagnosis of \nendometriosis. Esc Anna Nery. 2021;25(4):e20200374.\n 84. Varney FN. Women’s experiences of endometriosis: qualitative explora-\ntions of psychological support, and interactions with healthcare profes-\nsionals. [Doctorate Thesis]. Manchester (UK): University of Manchester; \n2020. Available from: https:// pure. manch ester. ac. uk/ ws/ porta lfiles/ portal/ \n20562 3295/ FULL_ TEXT. PDF [Accessed 27th March 2023]\n 85. Savidge CJ, Slade P . Psychological aspects of chronic pelvic pain. J Psy-\nchosom Res. 1997;42(5):433–44.\n 86. Vlaeyen JWS, Crombez G, Linton SJ. The fear-avoidance model of pain. \nPain. 2016;157(8):1588–9.\n 87. La Rosa VL, De Franciscis P , Barra F, Schiattarella A, Török P , Shah M et al. \nQuality of life in women with endometriosis: a narrative overview. Min-\nerva Med. 2020;111(1):68–78.\n 88. O’Hara R, Rowe H, Fisher J. Self-management in condition-specific health: \na systematic review of the evidence among women diagnosed with \nendometriosis. BMC Womens Health. 2019;19(1):80.\n 89. Rossi V, Tripoldi F, Simonelli C, Galizia R, Nimbi FM. Endometriosis-associ-\nated pain: a review of quality of life, sexual health and couple relationship. \nMinerva Obstet Gynecol. 2021;73(5):536–52.\n 90. Ruszala M, Dłuski DF, Winkler I, Kotarski J, Rechberger T, Gogacz M. The \nstate of health and the quality of life in women suffering from endome-\ntriosis. J Clin Med. 2022;11(7):2059.\n\nPage 16 of 16de C Williams and McGrigor  BMC Women’s Health           (2024) 24:50 \n 91. France EF, Uny I, Ring N, Turley RL, Maxwell M, Duncan EAS, et al. A meth-\nodological systematic review of meta-ethnography conduct to articulate \nthe complex analytical phases. BMC Med Res Methodol. 2019;19(1):35.\n 92. NICE https:// www. nice. org. uk/ guida nce/ ng73/ chapt er/ Recom menda \ntions- for- resea rch. Accessed 26 Mar 2023.\n 93. As-Sanie S, Black R, Giudice LC, Valbrun TG, Gupta J, Jones B, et al. Assess-\ning research gaps and unmet needs in endometriosis. Am J Obstet \nGynecol. 2019;221(2):86–94.\n 94. James Lind Alliance. https:// www. jla. nihr. ac. uk/ prior ity- setti ng- partn ershi \nps/ endom etrio sis/ top- 10- prior ities. htm. Accessed 26 Mar 2023.\nPublisher’s Note\nSpringer Nature remains neutral with regard to jurisdictional claims in pub-\nlished maps and institutional affiliations.","source_license":"CC0","license_restricted":false}