{"paper_id":"5d9f7a60-cbf6-4952-a7b5-13782901d60d","body_text":"1 \n \nA qualitative exploration into the role of illness \nperceptions in endometriosis-related quality of \nlife \nShort title: Endometriosis and illness perceptions \n \nChloe Moore*1, Dr Nicola Cogan1, Dr Lynn Williams1 \n \n1University of Strathclyde, Scotland, UK \n \n*Corresponding author information: Chloe Moore, School of Psychological Sciences \nand Health, University of Strathclyde, 40 George Street, Glasgow, G1 1QE, \nScotland, UK. e-mail: chloe.moore.100@strath.ac.uk  \n \nAbstract \nObjectives: Endometriosis is linked to adverse quality of life (QoL) outcomes. In the \nabsence of effective treatment for endometriosis-related symptoms, supporting the \nQoL of those experiencing endometriosis is crucial. Illness perception (IP) \ninterventions have prompted modest increases in QoL in several chronic conditions, \nyet IPs have not been comprehensively studied in relation to endometriosis. It is, \ntherefore, necessary to examine the IPs held by individuals experiencing \nendometriosis to establish whether IP-based interventions might be useful in \nsupporting QoL in this population. This research aims to gain an understanding of \nthe IPs held by people experiencing endometriosis and their impact on QoL. \nDesign: Qualitative using one-to-one online semi-structured interviews. \n . CC-BY-NC-ND 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 21, 2023. ; https://doi.org/10.1101/2023.03.16.23287347doi: medRxiv preprint \nNOTE: This preprint reports new research that has not been certified by peer review and should not be used to guide clinical practice.\n\n2 \n \nMethods: Thirty individuals with endometriosis participated. Interviews sought to \ngain an understanding of participants’ experiences and perceptions in relation to \nliving with endometriosis. Reflexive thematic analysis was used to develop themes. \nResults: Three major themes were developed: (1) a life disrupted; (2) lost and \nfragmented sense of self; and (3) complex emotional responses. Largely negative \nIPs were held by individuals living with the condition which, along with \nendometriosis-specific symptoms and reduced functioning, fuelled fears for the \nfuture and reduced QoL.  \nConclusions: Endometriosis-specific symptoms fuelled adverse QoL outcomes \ndirectly, and indirectly through moulding IPs. The disruption to the life trajectory \nassociated with experiencing the condition as well as perceptions of control had a \nmajor impact on participants’ wellbeing, self-concept, and the varied emotional \nresponses associated with experiencing endometriosis. IP-based interventions may \nsupport the wellbeing of those experiencing endometriosis whilst effective treatment \nis sought. \nKeywords: endometriosis, wellbeing, quality-of-life, illness perceptions, thematic \nanalysis\n \n \nData availability statement: \nThe data that support the findings of this study are not available due to privacy and \nethical restrictions. \n \nAcknowledgements: \nThis project is funded by a Scottish Graduate School for Social Science Economic \nand Social Research Council Studentship award (Project Reference: \n . CC-BY-NC-ND 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 21, 2023. ; https://doi.org/10.1101/2023.03.16.23287347doi: medRxiv preprint \n\n3 \n \nES/P000681/1). Special thanks to the endometriosis support groups who assisted \nwith the design and recruitment of this research.  \n . CC-BY-NC-ND 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 21, 2023. ; https://doi.org/10.1101/2023.03.16.23287347doi: medRxiv preprint \n\n4 \n \nIntroduction \nEndometriosis is a progressive, incurable condition characterised by the \npresence of endometrium-like tissue outside the uterus (Chapron et al., 2019). \nCommonly reported symptoms include chronic pelvic pain, menorrhagia, \ndyspareunia, sub-fertility and fatigue, although symptoms vary significantly between \nthose diagnosed with the condition (Maddern et al., 2020; Ramin-Wright et al., \n2018). Endometriosis affects approximately 1 in 10 women and people assigned \nfemale at birth globally (World Health Organization, 2021).   \nEndometriosis has a detrimental impact upon mental health and wellbeing \n(Vannuccini et al., 2017; Wang et al., 2021). Up to 64.4% and 63.5% of individuals \ndiagnosed with the condition experience depression and anxiety respectively \n(Sepulcri & Amaral, 2009), whilst approximately 56% meet the clinical parameters for \npsychiatric diagnosis (Pope et al., 2015). Endometriosis is further associated with an \nadverse impact on quality of life (QoL; Della-Corte et al., 2020; Kalfas et al, 2022; \nMarinho et al., 2018), although there is ongoing debate surrounding the mechanisms \nby which endometriosis leads to reduced QoL.  \nPain is the most prominent driver of endometriosis-related QoL outcomes \n(Broc et al, 2023; Facchin et al., 2015). As pain severity increases, as too does the \nlikelihood of stress, anxiety and depression (Bullo & Hearn, 2021; Facchin et al., \n2017), and reduced QoL (Culley et al., 2013). However, currently there is a lack of \neffective treatment for endometriosis-related pain and symptomology, so the \ncontribution of other factors to QoL has been examined to ascertain how best to \nsupport individuals diagnosed with the condition. Reduced functioning (especially in \nwork, sexual and social relationships; Nnoaham et al., 2011); diagnostic delays \n . CC-BY-NC-ND 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 21, 2023. ; https://doi.org/10.1101/2023.03.16.23287347doi: medRxiv preprint \n\n5 \n \n(Culley et al., 2013); and coping styles (González-Echevarría et al., 2019) have all \nbeen implicated in contributing to reduced QoL in endometriosis. Therefore, rather \nthan one single factor underlying endometriosis-related QoL outcomes, QoL is likely \ndetermined by a complex interplay of several physical, social and psychological \nfactors.  \nQualitative research suggests that the way in which people perceive their \nillness, for example, perceived control surrounding the progression and impact of \nendometriosis and the anticipated consequences of experiencing the condition, is \nlinked to QoL (Jones et al., 2004). A useful framework for comprehensively \nexamining illness perceptions (IPs) is Leventhal’s (1997) common sense model of \nself-regulation (CSM-SR). In this model, IPs are conceptualised as a person’s beliefs \nand expectations relating to a health threat or medical condition. According to the \nCSM-SR, IPs work together with an emotional response to the health threat to drive \nbehavioural responses and coping behaviours (Leventhal et al., 2016). This model \nsituates IPs in 5 areas: 1) illness identity; 2) expected timeline of the health \ncondition/threat; 3) the anticipated consequences of the health condition/threat; 4) \nthe perceived cause of the condition; 5) perceived control and effectiveness of \ntreatment in regulating or lessening symptoms (Leventhal et al., 2016). Moss-Morris \net al. (2002) extended this framework to include a further 3 IP dimensions: 6) the \nextent to which an individual understands their condition; and 7) the emotional \nresponse to the health threat/condition; 8) concern surrounding the condition. Control \nwas split into two distinct IPs: treatment control and personal control. \nIPs are important drivers of mental health and QoL in several chronic \nconditions including fibromyalgia (van Wilgen et al., 2008), irritable bowel disease \n(Rochelle & Fidler, 2013) and rheumatoid arthritis (Hyphantis et al., 2013). Zhang et \n . CC-BY-NC-ND 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 21, 2023. ; https://doi.org/10.1101/2023.03.16.23287347doi: medRxiv preprint \n\n6 \n \nal. (2016) reported that, for individuals experiencing Crohn’s Disease, IPs directly \ninfluenced anxiety, depression and QoL. Specifically, perceiving negative \nconsequences associated with Crohn’s, and framing the condition as uncontrollable \nincreased the likelihood of depression, anxiety, and lowered QoL. Furthermore, \ninterventions directly targeting IPs have led to modest improvements in treatment \noutcomes, mental wellbeing, and QoL in several conditions including diabetes, \nbreast cancer and myocardial infarction (Alyami et al., 2021; Fischer et al., 2012; \nSararoudi et al., 2016), suggesting that such interventions may support the QoL and \nwellbeing of individuals experiencing endometriosis.  \nIPs have not yet been comprehensively studied in relation to endometriosis. \nPrevious qualitative literature, however, suggests that beliefs surrounding control \nand the consequences of endometriosis are related to QoL (Moradi et al., 2014; \nYoung et al., 2015), with more negative perceptions increasing QoL detriments. This \nsuggests that interventions focussed on reframing the IPs of individuals experiencing \nendometriosis may be beneficial in supporting QoL in the absence of effective \ntreatment for endometriosis. However, endometriosis is dynamic and progressive \nwith no known cure, and as such the emotions and cognitions associated with \nendometriosis are likely to evolve over the course of the condition.  \nTherefore, this study aimed to gain an understanding of the ways in which \nendometriosis is perceived and experienced by people diagnosed with the condition, \nand how these cognitions affect QoL. Findings will be compared against pre-defined \nIP categories to assess whether the illness-related beliefs of people experiencing \nendometriosis conform to or transcend these categories.\n  \n . CC-BY-NC-ND 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 21, 2023. ; https://doi.org/10.1101/2023.03.16.23287347doi: medRxiv preprint \n\n7 \n \nMethod \nParticipants \nThirty participants were recruited from a pool of individuals who had \ncompleted a related survey as part of a broader project investigating factors \nassociated with QoL in individuals with endometriosis. These participants were \nrecruited from endometriosis support organisations and social media. A sampling \nmatrix prioritising the recruitment of individuals with a range of ethnic backgrounds, \nages, employment status’, household incomes, and educational attainment was used \nto ensure a diverse sample.  \nParticipants were aged between 20 and 55 years (M=35.6, SD=9.49). \nAdditional participant demographics are displayed in table 1. Individuals were eligible \nto participate if they had been formally diagnosed with endometriosis (e.g., through \nlaparoscopic investigation), were over the age of 18 and resided in the UK or Ireland. \nParticipants had experienced endometriosis symptoms for 4 – 40 years (M=14.83 \nyears, SD=9.18), and had been diagnosed for an average of 5 years (SD=6.97). \nFurther information on the nature of participants’ endometriosis is presented in table \n2. Participants were given pseudonyms to preserve their anonymity. \n Table 1 \nParticipant demographics  \n N % \nEthnicity   \nWhite British 20 66.7% \nIndian 2 6.7% \nAfrican 2 6.7% \nAnother Mixed Background 2 6.7% \nPakistani 1 3.3% \nAsian and White 1 3.3% \nAnother Ethnic Background 1 3.3% \nAnother White Background 1 3.3% \n . CC-BY-NC-ND 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 21, 2023. ; https://doi.org/10.1101/2023.03.16.23287347doi: medRxiv preprint \n\n8 \n \n   \nRelationship Status   \nMarried 10 33.3% \nCohabiting with partner 10 33.3% \nSingle 9 30% \nWidowed 1 3.3% \n   \nEducational attainment   \nUndergraduate / Bachelors degree 10 33.3% \nPostgraduate degree 6 20% \nSecondary education to GSCE/O-levels/National 5 or \nequivalent \n4 13.3% \nSecondary education to Highers/A-level or equivalent 3 10% \nDiploma of Higher Education/Foundation Degree/Higher \nNational Diploma/NVQ level 5/level 5 diploma or equivalent \n3 105 \nLeft school with no qualifications 2 6.7% \nCompleted secondary school to National 3/4 or standard \ngrade \n1 3.3% \nPrefer not to say 1 3.3% \n   \nEmployment status   \nEmployed full-time 11 36.7% \nDisabled or unable to work 6 20% \nEmployed part-time 5 16.7% \nSelf-employed 3 10% \nUnemployed, looking for work 2 6.7% \nEmployed on a zero hours or casual contract 1 3.3% \nFull-time student 1 3.3% \nPart time student 1 3.3% \n   \nCountry of residence   \nEngland 17 56.7% \nScotland 12 40% \nWales 1 3.3% \n \n \nTable 2 \nParticipant endometriosis information  \n N % \nTreatment   \nNHS 16 53.3% \nSome private, some NHS 13 43.3% \nCompletely private 1 3.3% \n   \nCo-morbid condition   \nYes 18 60% \nNo 12 40% \n . CC-BY-NC-ND 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 21, 2023. ; https://doi.org/10.1101/2023.03.16.23287347doi: medRxiv preprint \n\n9 \n \n   \nSurgery   \nHad surgery 24 80% \nNot had surgery 6 20% \n   \nNumber of surgeries   \n1 10 33.3% \n2 8 26.7% \n3 3 10% \n4 2 6.7% \n5 1 3.3% \n   \nTrying for baby   \nYes 12 40% \nNo 17 56.7% \nPrefer not to say 1 3.3% \n \nSample size \nA sample size of 30 was deemed appropriate to provide an in-depth, reflective \naccount of participants’ experiences (Farrugia, 2019). Data saturation is not \nconsidered due to the incompatibility of this concept with reflexive thematic analysis \n(RTA), which was adopted for this study (Braun & Clarke, 2019; 2021). In RTA, \ncodes and themes are fluid and organic, and subsequently there is no clear point at \nwhich codes and themes cease to materialise as posited by the concept of data \nsaturation.  \n \nData collection \nUpon receiving ethical approval from the host institution, the sampling matrix \nwas used to identify potential participants who had previously indicated their interest \nin participating in an interview. An information sheet was sent to selected individuals \nvia email and those interested provided written consent to be interviewed. Interviews \nwere semi-structured and facilitated by the first researcher online. Interviews were \naudio recorded and lasted 42 to 90 minutes (M=62 minutes). Participants reiterated \n . CC-BY-NC-ND 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 21, 2023. ; https://doi.org/10.1101/2023.03.16.23287347doi: medRxiv preprint \n\n10 \n \ntheir consent verbally before the commencement of the interview. Reflexive notes \nwere taken throughout. Following the interview, participants were debriefed and \noffered a £20 Amazon e-voucher as compensation for their time. \nA topic guide consisting of open-ended questions and prompts was \ndeveloped. This included broad questions relating to participant’s beliefs about their \ncondition and more specific questions informed by the pre-existing IP model. The \ntopic guide was piloted with 2 participants to ensure that questions were relevant and \ncomprehensive. During the interviews, participants were asked to describe the \nimpact of endometriosis on their lives, before answering questions surrounding their \nperceptions of endometriosis. Topics included the consequences of living with \nendometriosis, the emotional impact associated with the condition, and perceived \ncontrol over endometriosis.  \n \nAnalysis \nData was analysed in line with Braun and Clarke’s (2006; 2019) guidelines for  \nRTA, due to the theoretical flexibility associated with this approach, and its capacity \nto reduce large quantities of data into comprehensive, accessible themes that \nprovide a coherent, nuanced account of participant experiences (Braun & Clarke, \n2012). An inductive approach was first adopted to develop themes out-with a \ntheoretical framework, before a deductive approach was taken to compare the \nidentified themes to pre-established IP dimensions (Leventhal et al., 1997). \nThroughout the analytical process, a reflexive journal was kept by the first researcher \nto note thoughts, feelings, and assumptions relevant to this process. Initially, the first \nauthor read through each transcript several times whilst noting prominent ideas \n . CC-BY-NC-ND 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 21, 2023. ; https://doi.org/10.1101/2023.03.16.23287347doi: medRxiv preprint \n\n11 \n \nderiving from participant accounts. NVivo was used to organise the data into 156 \ncodes. Similar and duplicate codes were merged, and others were redefined leaving \n124 codes. Potential themes were derived by grouping related codes together. \nThemes were reviewed based on their relevance to the research question before \nthey were defined and named. The final stage of analysis involved discussion \namongst all authors regarding the appropriateness of the themes and their \ndefinitions in relation to the research question, before three themes were selected \nand finalised for this report. \n  \n . CC-BY-NC-ND 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 21, 2023. ; https://doi.org/10.1101/2023.03.16.23287347doi: medRxiv preprint \n\n12 \n \nResults \nThree major themes were constructed: (1) a life disrupted; (2) lost and \nfragmented sense of self; and (3) complex emotional responses. Each theme \nmapped onto multiple pre-existing IP dimensions (figure 1).  \nFigure 1 \nRelationship between identified themes and illness perceptions \nThemes Illn ess Perceptions \n \n  \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \n \nDisrupted life \ntrajectory \nLost sense of self \nComplex emotional \nresponses \nConsequences \nPerceived impact of \nendometriosis \nTimeline \nPerception of endo as \nenduring \nControl \nPowerlessness over \nimpact and treatment \nIdentity \nPerception of symptoms \nassociated with endo \nCoherence \nUnderstanding of endo \nas \nincurable/progressive \nCause \nUnknown cause, “why?” \nEmotional \nRepresentation \nAnger, fear, strength \nConcern \nConcern around impact, \nprogression, future \n . CC-BY-NC-ND 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 21, 2023. ; https://doi.org/10.1101/2023.03.16.23287347doi: medRxiv preprint \n\n13 \n \n \n \nTheme 1: A life disrupted \nParticipants all referred to the multiple and varied life disruptions that were an \ninevitable consequence of living with endometriosis. Many disclosed that \nendometriosis prevented them from living the life they wanted and felt that their \npotential in life had not been realised due to the debilitating symptoms they \nexperienced. What constituted participants’ potential varied between accounts. \nOften, potential was defined in terms of career or education goals, although some \ndescribed their potential in relation to their relationships or fertility. There was a \nsense of lost time and missed opportunities attributed to endometriosis: \n“I feel like it's [endometriosis] kinda taken away my youth and it's taking away from \nall of the things that I aspire to do and that I could have done and could have \nachieved.” [Ash]. \n \nThis sense of loss was woven through participant accounts, encompassing \nseveral life domains including education, work, relationships and, often, day-to-day \nfunctioning. Participants stressed that no aspect of their lives was left untouched by \nthe impact of endometriosis: \n“It’s an everyday thing that impacts on my actual ability to just function in life.” \n[Morgan]. \n \n The language used by participants implied a sense of powerlessness \nattributed to endometriosis, which manifested itself in participants’ life trajectories. \n . CC-BY-NC-ND 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 21, 2023. ; https://doi.org/10.1101/2023.03.16.23287347doi: medRxiv preprint \n\n14 \n \nSeveral perceived endometriosis as “controlling” [Alina] their lives, and viewed their \nlife trajectories as dictated by the progression of the condition: \n“I felt like all the choices I would want to make about my own life, that I should have \nmade, it felt like it was taken away by endometriosis. […] I feel like I’m not in control \nof my life, this illness is.” [Billie]. \n \n Perceived disruption to life trajectories often prompted a negative emotional \nresponse. Participants described feelings of sadness and frustration related to their \ncircumstances, with some experiencing symptoms of anxiety and depression \nbecause of endometriosis-related life disruption(s). Adverse impacts on QoL and \nmental wellbeing were emphasised by several participants, largely facilitated by \nfunctioning detriments triggered by endometriosis (e.g., social functioning, work \nfunctioning, day-to-day functioning): \n“It’s actually not the pain that’s the worst part of the disease, it’s the impact that it \ndoes have on my life and how it prevents me from doing things that has affected my \nmental health more than anything.” [Emily]. \n \n This impact on wellbeing was associated with several life domains including \nwork and relationships. Negative mental health outcomes were particularly pertinent \nfor participants experiencing infertility or uncertainty around their fertility. It must be \nnoted that participants differed widely in their thoughts, feelings and experiences with \nregards to fertility and parenthood, with several participants childfree by choice, \nsome actively trying to conceive and others who had successfully conceived. \nNonetheless, several participants described feelings of helplessness, \n . CC-BY-NC-ND 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 21, 2023. ; https://doi.org/10.1101/2023.03.16.23287347doi: medRxiv preprint \n\n15 \n \npowerlessness, and anxiety related to their experiences with fertility, particularly \nwhen conceiving was difficult or unsuccessful: \n“I worry will I ever have children, what lies ahead for me?” [Indra] \n \n Participants often voiced a sense of uncertainty and fear surrounding the \nfuture, and this sentiment was not exclusive to fertility. There was a general \nunderlying apprehension regarding the future woven through participant accounts. \nThis apprehension was often fuelled by historic disruptions to participants’ life \ntrajectories across several life domains (e.g., work, relationships) as well as the \nincurable nature of endometriosis, leading many to speculate that their symptoms \nwould last forever. Participants displayed great awareness of the progressive nature \nof their condition, often driving fears that endometriosis-related symptoms might \nworsen over time and dictate their future outcomes: \n“It’s just this idea of, it can grow as it likes, it has no cause that’s known, there’s no \ntreatment plan, the pain is excruciating and it will never go away. And I think that to \nme felt like, this thing is going to kind of colonise my life.” [Polly] \n \n However, participant responses were complex and diverse, and \ncorrespondingly some did not share the same apprehensions surrounding the future \nas described above. Several described “taking one day at a time” [Jackie] and \nattempting to focus on the present rather than the future [Skye] to prevent fears \nsurrounding the future from taking hold: \n“I don’t look too far ahead because if I look at this time 6 months ago I was in a \ncompletely different place so, you know, I just take every day as it comes and make \n . CC-BY-NC-ND 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 21, 2023. ; https://doi.org/10.1101/2023.03.16.23287347doi: medRxiv preprint \n\n16 \n \nthe most of it.” [Violet] \n \n Similarly, some participants had learned to find ways to live with the life \ndisruptions associated with endometriosis, for example by entering jobs with flexible \nworking patterns, or keeping diaries of their symptoms and triggers to pre-empt \nendometriosis flare-ups and prepare, as far as possible, for impending symptoms. \nAfter disclosing the disruption caused by endometriosis to their sexual functioning, \none participant described how re-framing their definition of sex had minimised the \ndisruption on their relationship:  \n“We haven’t had penetration in our sex life for the full 2 years of our relationship and \nit hasn’t impacted on our love for each other and our intimacy because he doesn’t \nwant to see me in pain and I’m at a stage where I’m confident enough within myself \nthat I’m not willing to put myself through pain for anyone else either so we work with \nways together. Em, we can both experience pleasure that doesn’t involve me being \nin agony and crying because that isn’t fun for anyone. Re-framing that definition [of \nsex] has helped me to feel better about myself as a woman.” [Emily] \n \n As demonstrated by this extract, restructuring pervasive and negative \nperceptions around the destructive nature of endometriosis led to improvements in \nself-esteem for this participant, which in itself is linked to overall wellbeing and QoL \n(Martinsen et al., 2021).  \n Clear through each participant’s account was their resolve to regain some of \nthe control over their life trajectory that was thought lost through endometriosis: \n“I’m going to be able to live with this, it’s not going to take my life.” [Sarah] \n . CC-BY-NC-ND 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 21, 2023. ; https://doi.org/10.1101/2023.03.16.23287347doi: medRxiv preprint \n\n17 \n \n \nTheme 2: Lost and fragmented sense of self  \nParticipants generally felt that their identity was moulded and driven by \nendometriosis. Several participants described their sense of self as “lost” [Violet], \noften stating that they felt like a “different person” [Robin] owing to the impact of \nendometriosis on their lives:  \n“I don’t think I’ll ever be the person I was before, I think this [endometriosis] has \nchanged me forever.” [Becky]. \n \n Some participants described the heavy emotional burden associated with \nexperiencing a progressive, often debilitating condition. There was a sense that \nendometriosis slowly eroded participant’s sense of self, that the longer this emotional \nburden was carried, the more significant the impact on their self-concept: \n“You feel like you’re not yourself anymore. You’re someone, you’re someone \ndifferent. You sort of become the illness in a way.” [Billie]. \n \n This sense of the self as lost to endometriosis was often interlinked with \nfeelings of vulnerability elicited by the symptoms associated with endometriosis. For \nmany participants, pain and fatigue progressed with the condition, provoking a shift \nin self-perception. Some defined themselves as increasingly “sick” [Indra], “unwell” \n[Alex], and there was a sense amongst some that endometriosis had stripped away \npreviously salient aspects of their identity: \n . CC-BY-NC-ND 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 21, 2023. ; https://doi.org/10.1101/2023.03.16.23287347doi: medRxiv preprint \n\n18 \n \n“I did change and, um, I became a victim. Um, and that wasn’t me before, you know, \nI was always independent, stood on my own two feet and I didn’t rely on anybody \nand with, with the pain and everything else I became a different person.” [Robin] \n \n Perceptions of the self as increasingly “unwell” [Alex], along with functioning \ndetriments engendered by endometriosis symptoms led to shifts in specific aspects \nof the identity. Femininity and sexual identity were particularly impacted by \nendometriosis in this participant group and were intrinsically linked, in that specific \nsymptoms (e.g., pain during sex, fatigue) eroded participant’s sexual drive which \ndismantled perceptions of femininity. This sense of diminished femininity then \nimpacted sexual drive and desire: \n“I just physically can’t [have sex]. I don’t feel feminine, I don’t feel sexy because I’m \nin pain and living in oversized jogging bottoms.” [Nathalia] \n \n Several participants perceived themselves as “less of a woman” [Billie; Emily] \ndue to the impact of endometriosis-related symptoms on their sexual functioning and \nfeminine identity. The sense that femininity was lost to endometriosis had a marked \nimpact on the self-esteem of several participants: \n“I’m really bloated so that means I can’t wear that nice dress that I want to wear, I \ncan’t wear heels. But now I have to go and find something that doesn’t dig into my \nstomach and is more floaty and, like, in terms of like, self-confidence as a woman, \nthat’s taken a big hit.” [Nathalia] \n \n . CC-BY-NC-ND 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 21, 2023. ; https://doi.org/10.1101/2023.03.16.23287347doi: medRxiv preprint \n\n19 \n \n However, not everyone who experiences endometriosis identifies as feminine \nor female. One non-binary participant described the impact of living with \nendometriosis on their own self-perception. Living with symptoms such as menstrual \nbleeding and chronic pelvic pain activated a sense of gender dysphoria in them, and \nleft them feeling “confused”, “isolated” and with a fragmented sense of their own \ngender identity: \n“[diagnosis] didn’t help with the old gender identity because they’re very much, this is \na woman’s disease, this is a woman’s illness. This is a thing that happens to women, \npeople with uteruses. And I’m just over here like, oh no.” [Morgan]\n \n \n \n Changes to the self-concept engendered by endometriosis were not only \nlinked to symptomology, but the broader treatment of endometriosis in both societal \nand medical settings. There was a general sense that symptoms were minimised \nand dismissed by others, particularly healthcare professionals. Several participants \ndescribed the internalisation of these minimised symptoms, that what they were \nexperiencing was characteristic of regular menstruation and the result of a “low pain \nthreshold” [Iona; Robin]. This led many participants to question their knowledge and \nexpertise in their own bodies. Many accepted that the symptoms they were \nexperiencing were ‘normal’ and felt instead that it was their response to these \nsymptoms that was abnormal: \n“I was just thinking, I'm imagining these pains, there is no pain here, I’m just \nimagining it.” [Charlie] \n \n . CC-BY-NC-ND 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 21, 2023. ; https://doi.org/10.1101/2023.03.16.23287347doi: medRxiv preprint \n\n20 \n \n There was often a sense of an internal struggle to control the self-concept \namongst participants, in which internalised notions that their symptoms were not real \nor were a ’normal’ part of menstruating were pitted against an internal sense that \ntheir symptoms were real and valid: \n“You feel like something’s there but you keep getting told that nothing’s there and \nthen it’s this anxiety of, I’m imagining things. I don’t know what’s real and what’s not \nanymore.” [Indra] \n \n Despite the wide-reaching impact of endometriosis on the sense of self, there \nwas a general determination amongst participants not to allow endometriosis to \nseize their identity completely: \n“I think, well it doesn’t define me, this is just something that I deal with and I cope \nwith.” [Sarah] \n \n Additionally, some participants reflected on the positive ways in which \nendometriosis had shaped their identity, specifically highlighting patience, resilience \nand strength: \n“it’s only recently that I’ve looked back on everything and thought you know what, I \nam strong, I can see my identity as more, you know, I do identify as someone who \ndoes, I’ll push for things and I’m brave and I’ll talk about things and I’m not shy about \nit and, um, you know, I think that’s sort of changed my identity.” [Alina] \n \nTheme 3: Complex emotional responses  \n . CC-BY-NC-ND 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 21, 2023. ; https://doi.org/10.1101/2023.03.16.23287347doi: medRxiv preprint \n\n21 \n \nParticipants’ endometriosis-related experiences prompted several emotions. \nEmotions varied widely but can be separated into two categories: i) endometriosis as \nan emotional burden; ii) endometriosis as a facilitator of emotional strength. \nParticipants generally described emotions in each of these categories, highlighting \nthe complexity and sometimes conflicting feelings surrounding endometriosis.\n \n \n3.1: Endometriosis as an emotional burden \nFrustration was the most prominent emotion described in relation to \nparticipants’ experiences of endometriosis. This often stemmed from knowledge of \nthe incurable and progressive nature of endometriosis, and the lack of effective \ntreatment available. The unknown cause of endometriosis also gave rise to feelings \nof frustration: \n“How are there people that don’t end up suffering? Obviously you wouldn’t wish it on \nanyone but it’s just that understanding of why certain people get it and why other \npeople don’t and it makes you feel frustrated that it does end up being you that \nexperiences it.” [Jenny] \n \nWidespread misunderstanding and the minimisation of participant \nexperiences in medical settings was also a common source of frustration: \n“It’s been frustrating that no-one would take me seriously, frustrating that lead times \non appointments were too long, frustrating, frustrating that no-one seems to \nunderstand it, frustrating that, you know, it’s something we’ve known about for \nhundreds of years and yet we still don’t know anything about it.” [Becky] \n \n . CC-BY-NC-ND 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 21, 2023. ; https://doi.org/10.1101/2023.03.16.23287347doi: medRxiv preprint \n\n22 \n \n Frustration led to feelings of anger for many participants. Anger was often \nintertwined with the perceived negative impact of endometriosis on the life trajectory \nand identity, linked with feelings of powerlessness: \n“I am raging inside that I’ve got to be kind of forced into a position of being weak and \nnot being able to do what I want to do.” [Reece] \n \n Feelings of sadness were also described by several participants. As above, \nsadness tended to revolve around a sense of powerlessness and lack of control over \nthe condition. Participants sometimes voiced a sense of being “attacked” [Ava] by \ntheir own body which led to sadness and hopelessness: \n“Sometimes I’m like I can’t believe my body is betraying me, it’s like really just \nrubbish, why does, you know, so that’s quite, I would say, a little bit upsetting \n[crying].” [Evelyn] \n \nGuilt was another prominent emotion throughout participant accounts. Guilt \ntended to surround the impact of endometriosis on relationships, for example, being \nphysically unable to engage in sexual activity with intimate partners or rejecting \nsocial invitations from friends due to endometriosis-related symptoms. Participants \nwith daughters also often shared a sense of guilt and dread at the prospect of their \nchildren inheriting the condition:  \n“What kills me is I’ve just had a baby, and when I found out it was a girl it was \ndefinitely in my head that this is something that I’m now going to pass on to her and \nshe’s now going to have to live with this and that part made me upset.” [Sarah] \n \n . CC-BY-NC-ND 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 21, 2023. ; https://doi.org/10.1101/2023.03.16.23287347doi: medRxiv preprint \n\n23 \n \nFurthermore, participants often described feelings of loneliness, often \nprompted by a sense that their experiences were misunderstood by large swathes of \nsociety due to a lack of understanding and education surrounding endometriosis: \n“I have went for the better part of about 13 years going no-one else experiences \nwhat I experience. You know, and having no one else that understands it is very, \nvery isolating.” [Mira] \n \n For some participants, the emotional pain they experienced due to \nendometriosis progressed into longer-term mental health concerns. Many described \nenduring long periods of low mood and symptoms of depression: \n“It [endometriosis] affected my mental health big time. I woke up in the morning and \njust felt like there was this black cloud above my head and I didn’t want to get up, I \njust wanted to hide away.” [Billie] \n \n3.2: Emotional strength stemming from endometriosis \nContrarily, some participants described finding emotional strength through \ntheir experiences of living with endometriosis. This strength was often forged through \nestablishing coping mechanisms to mitigate the mental health impact of \nendometriosis: \n“I think it’s had to make me a stronger person because I’ve just had to deal with it, \nit’s just something that I’ve, that’s part of my life.” [Sarah] \n \n . CC-BY-NC-ND 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 21, 2023. ; https://doi.org/10.1101/2023.03.16.23287347doi: medRxiv preprint \n\n24 \n \nThe notion of “dealing with” endometriosis implies a sense of control over the \ncondition, indicating that emotional strength may be derived from challenging the \nfeelings of powerlessness that are so often linked to endometriosis. \nParticipants often derived feelings of empowerment and strength through \nusing their experiences to support and advocate for others. For several participants, \nthis gave value and purpose to their experiences: \n“I’ve done a lot of work like helping other people which has gave me a bit of like \npurpose and again something good that’s come out of it where at least I’ve been \nable to help other people whether it’s to give advice and support or just to listen and \ntell them ‘I understand what you’re going through’.” [Emily]. \n“It’s almost like having a little piece of wisdom that you get from unfortunate \ncircumstances.” [Alina] \n One participant described endometriosis as giving them a sense of “pride” \n[Casey]. Benefit finding was common amongst participants, indicating a \ndetermination to mitigate against the negative emotional impact associated with the \ncondition.\n . CC-BY-NC-ND 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 21, 2023. ; https://doi.org/10.1101/2023.03.16.23287347doi: medRxiv preprint \n\n25 \n \nDiscussion \nThis study is the first to qualitatively explore endometriosis-related IPs and \ntheir relation to QoL amongst individuals experiencing endometriosis. An inductive \nand deductive approach to analysis allowed for IPs to be considered both organically \nand within a theoretical framework. \nBroadly, the findings reflect previous research suggesting that endometriosis \nhas a detrimental impact on the QoL and wellbeing of those experiencing the \ncondition (e.g., Wang et al., 2021). There were, however, disparities within \nparticipant accounts regarding the extent to which endometriosis impacted aspects \nof QoL, with some recounting a pervasive, debilitating effect on their lives, and \nothers describing a more manageable, fluctuating impact. This nuance in participant \nexperience is likely associated with disparities in endometriosis symptomology.  \nAlthough the findings of the current study conform to the notion that endometriosis \nsymptomology is inherently and irreversibly linked to QoL, they also add to the \nexisting literature by highlighting additional mechanisms by which endometriosis may \nimpact QoL and wellbeing, specifically by moulding and shaping IPs which, within \nthis participant group, were linked to dimensions of QoL such as life trajectory, the \nself-concept, and emotional impact. IPs were shaped both directly by endometriosis \nsymptomology and indirectly through functioning detriments. Figure 2 provides a \nvisual representation of this relationship as derived from participant accounts within \nthis study. \nFigure 2 \nRelationship between endometriosis symptoms, functioning, IPs and QoL \n . CC-BY-NC-ND 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 21, 2023. ; https://doi.org/10.1101/2023.03.16.23287347doi: medRxiv preprint \n\n26 \n \n \nEach of the inductively identified themes mapped on to multiple pre-defined \nIPs (figure 1). Previous research has already demonstrated the pervasive, negative \nimpact of endometriosis on life domains such as relationships, sleep, work and \neducation, and sex and fertility (Halici et al, 2023; Missmer et al., 2021). Theme 1 \nencapsulates these effects, demonstrating the wide-ranging negative perceived and \nactual consequences of endometriosis on participants’ life trajectories. Participants \noften highlighted specific symptoms such as pain and fatigue as the cause of \ndisruption to their expected life trajectories, indicating a lack of control over \nendometriosis and the subsequent impact on their lives. This is perhaps \nunsurprising, given the incurability of endometriosis and research demonstrating that \ntreatment is ineffective in the long-term for many individuals (Nirgianakis et al., \n2020). Indeed, participants demonstrated a strong awareness and knowledge of their \ncondition, including the incurable nature of endometriosis and potential progression \nof their symptoms, and this coherence was instrumental in cultivating feelings of \npowerlessness in relation to endometriosis. Furthermore, there was a general sense \nthat endometriosis symptoms would persist throughout the lifespan. Perceptions of \nthe enduring timeline of endometriosis were linked to fears associated with the \nconsequences of endometriosis on the life trajectory as well as perceptions of control \nover the condition. Research suggests that endometriosis symptoms persist even \nafter menopause (Secosan et al., 2020), potentially fuelling the fears for the future \nvoiced by several participants. The perceived consequences of endometriosis on the \nlife trajectory also prompted a strong emotional response from many participants, \nwho described detrimental wellbeing effects stemming from the disruption and \nanticipated disruption to their lives, including anxiety and sadness. However, \n . CC-BY-NC-ND 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 21, 2023. ; https://doi.org/10.1101/2023.03.16.23287347doi: medRxiv preprint \n\n27 \n \nimportantly, some participants described re-framing their perceptions around the \nconsequences of endometriosis, leading to improvements in their wellbeing and \nQoL. It is important that future research investigates this potential link further to \nestablish whether interventions to address IPs may be beneficial for individuals \nexperiencing endometriosis. \nCorresponding with previous qualitative research suggesting a link between \nendometriosis and the identity (Cole et al., 2021), theme 2 highlights a fragmented \nand lost sense of self attributable to participants’ experiences of endometriosis. \nAlthough identity is a pre-defined illness perception, ‘identity’ within this theme \ntranscends the definition offered by the CSM-SR, in which it is centred around \nperceptions of the symptoms associated with the condition rather than the sense of \nself (Leventhal et al., 2016). In the current study, identity refers to the broader self-\nconcept and theme 2 explores participants’ perceptions of the way in which this is \nmoulded, driven, and changed by endometriosis. This theme is interlinked with \ntheme 1, as many of the perceived changes to identity stemmed from the impact of \nendometriosis on specific life domains such as work and relationships. This is in-\nkeeping with research demonstrating that the sense of self is intrinsically linked to \nsocial aspects including career choice (Fryers, 2006), familial relationships \n(Anderson & Chen, 2002) and sex (Hensel et al., 2011). In turn, the self-concept is \nlinked to QoL in several chronic conditions (e.g., Octari et al., 2020), suggesting that \nIPs may indirectly impact endometriosis-related QoL through shaping the identity. \nAdditional research is required to examine this potential link further. Within this \nstudy, participants used terms such as “lost” to describe their identity, implying a \nsense of powerlessness and loss of control surrounding their sense of self. However, \nusing the term “lost” rather than “broken” or “gone” suggests a sense that the self-\n . CC-BY-NC-ND 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 21, 2023. ; https://doi.org/10.1101/2023.03.16.23287347doi: medRxiv preprint \n\n28 \n \nconcept may be recovered, as found among people living with other chronic \nconditions (Cogan et al, 2016; Golub et al, 2014; Vann-Ward et al, 2017). This \nfinding implies an underlying hope that control of the identity might be regained from \nendometriosis. This corresponds with the dichotomy observed within some \nparticipant accounts, in which the sense of self was described as driven by \nendometriosis but, simultaneously, there was a determination to not allow \nendometriosis to take over the identity. \nExamining participant’s perceptions of their identity through an IP lens \nrevealed shared experiences amongst participants such as the internalised \ntrivialisation of endometriosis-related symptomology, which corresponds to broader \nsocial themes including the treatment of women’s health conditions in medical and \nsocietal settings. There is vast sociological discourse on the treatment of women’s \nhealth conditions that corresponds with participant’s accounts of the minimisation of \ntheir symptoms at both societal and medical levels (e.g., Alexander et al., 2020). \nWithin the current study, participants often questioned their knowledge and expertise \nin their own bodies, with some doubting their experiences and even their ‘sanity’. In \nthis, many participants appeared to experience a sense of externalised self-\nperception (Jack & Dill, 1992) in which they viewed themselves through the lens of \nothers. This is described as an act of self-silencing and has been linked to \nendometriosis in previous qualitative research (Cole et al., 2021).  \nA strong emotional response to endometriosis was woven throughout \nparticipant accounts, and this is described in theme 3. Feelings of anger and \nfrustration correspond to previous qualitative research where they are often \nintertwined with endometriosis-specific factors such as treatment effectiveness and \ndiagnostic delay (Jones et al., 2004). Within this study, the emotional response was \n . CC-BY-NC-ND 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 21, 2023. ; https://doi.org/10.1101/2023.03.16.23287347doi: medRxiv preprint \n\n29 \n \noften interlinked with perceptions of control, coherence, consequences and the \nanticipated longevity of endometriosis symptoms. Negative emotional responses \nwere most prominent throughout participant accounts, corresponding with previous \nliterature suggesting that frustration, fear and sadness are common amongst people \nexperiencing endometriosis (Young et al., 2015). However, perhaps surprisingly, \nsome participants described positive emotions associated with endometriosis, \nemphasising resilience, pride and strength cultivated by endometriosis. This was \noften linked with a sense of hope for the future and participants finding value in their \nexperiences by supporting, educating, and advocating for others. In this participant \nsample, benefit finding was a commonly used strategy to lessen the emotional \nimpact of endometriosis. The impact of benefit finding on emotions and wellbeing \nhas not yet been researched in endometriosis and therefore constitutes an important \narea for future research. \nIPs in this participant sample could be matched to each of the pre-defined IPs \nas described in the CSM-SR (figure 1). Most prominent in this sample were \nperceptions of control and consequences, which were clearly linked to participants’ \nlife trajectories and sense of self. Less clear however is the role of the illness identity \n(i.e., how endometriosis is viewed by those living with the condition) or the perceived \ncause of endometriosis. As there is no known cause for endometriosis, perceptions \naround causation may not be particularly strong within this population which may be \nreflected in the results of this study. However, recent research suggests that many \nindividuals experiencing endometriosis hold subjective views of the cause of their \ncondition (Münch et al., 2022), and in the current research the lack of a known cause \nitself did prompt an emotional response in some participants. Therefore, future \n . CC-BY-NC-ND 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 21, 2023. ; https://doi.org/10.1101/2023.03.16.23287347doi: medRxiv preprint \n\n30 \n \nresearch could endeavour to establish whether there is a link between perceptions of \nendometriosis cause and QoL and/or wellbeing. \nConsidering the findings of this research, namely that the experiences of \nparticipants are linked to IPs, and that shifts in some IPs appear to prompt positive \nQoL and psychological outcomes, it is possible that IP-based interventions may \npartially mitigate the detrimental impact of endometriosis on QoL outcomes. This is \nnot to say that psychological intervention can replace effective treatment, but that it \nmay support the wellbeing of individuals diagnosed with endometriosis whilst reliable \ntreatment is sought. Due to the dearth of research on this topic, future research \ncould assess IPs with a large sample of individuals using pre-established measures \nof IPs such as the revised illness perception questionnaire (Moss-Morris et al., 2002) \nto investigate further the appropriateness of studying endometriosis within a CSM-\nSR framework before corresponding interventions are trialled. \n \nStrengths and limitations \nTo our knowledge, this is the first study to qualitatively consider the IPs of \nindividuals living with endometriosis. This paper extends current knowledge on the \nmechanisms underlying adverse QoL outcomes in people experiencing \nendometriosis by suggesting that IPs may contribute to QoL alongside stronger \npredictors of wellbeing such as pain. However, this study must be viewed in light of \nits limitations as well as its strengths. Firstly, participants were largely recruited \nthrough social media channels and support groups, indicating that many had actively \nsought support for their condition. People involved in support groups may hold views \nunreflective of the wider population in two distinct ways: i) they may have worsened \n . CC-BY-NC-ND 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 21, 2023. ; https://doi.org/10.1101/2023.03.16.23287347doi: medRxiv preprint \n\n31 \n \nsymptomology and more negative experiences leading them to seek support; ii) they \nmay have a more positive outlook regarding their endometriosis diagnosis due to \nincreased support and coping mechanisms. \nAdditionally, the interview topic guide was underpinned by the CSM-SR and \nmany questions related to pre-existing IPs. Therefore, although an inductive \napproach was taken in constructing themes, the information yielded from the \ninterviews may have been heavily slanted towards the CSM-SR’s depiction of IPs. \nTherefore, important IPs held by participants but existing out-with this theoretical \nframework may have been missed and the role of pre-established IPs over-\nemphasised. However, in investigating IPs within a pre-established framework, this \nresearch lays the groundwork for future investigation into the role of IPs in \nendometriosis-related outcomes by suggesting that these cognitions likely contribute \nto QoL and psychological wellbeing outcomes. \n \nConclusion \nThis study highlights the complex and dynamic nature of the IPs held by individuals \nexperiencing endometriosis. Endometriosis-specific symptoms such as pain were the \nmain driver of QoL detriments within this population, and these symptoms and their \nassociated impact cultivated and moulded endometriosis-related IPs. Whilst effective \ntreatment continues to be sought for endometriosis-related symptoms, it is important \nthat research continues to investigate the factors that may mitigate the detrimental \nimpact of endometriosis on QoL and wellbeing. These findings offer clear indications \nthat interventions based on endometriosis-related IPs may support the QoL of \n . CC-BY-NC-ND 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 21, 2023. ; https://doi.org/10.1101/2023.03.16.23287347doi: medRxiv preprint \n\n32 \n \nindividuals experiencing endometriosis, and suggests that future research explore \nthe link between IPs and QoL in endometriosis further.  \n \n \n  \n . CC-BY-NC-ND 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 21, 2023. ; https://doi.org/10.1101/2023.03.16.23287347doi: medRxiv preprint \n\n33 \n \nReferences \nAlexander, L. L., LaRosa, J. H., Bader, H., & Garfield, S. (2020). New dimensions in women's health. \nJones & Bartlett Learning. \nAlyami, M., Serlachius, A., O'Donovan, C. E., van der Werf, B., & Broadbent, E. (2021). A systematic \nreview of illness perception interventions in type 2 diabetes: Effects on glycaemic control and illness \nperceptions. Diabetic Medicine, 38(3), e14495. \nBecker, C. M., Gattrell, W. T., Gude, K., & Singh, S. S. (2017). Reevaluating response and failure of \nmedical treatment of endometriosis: a systematic review. Fertility and sterility, 108(1), 125-136. \nBraun, V., & Clarke, V. (2006). 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Patient Preference and Adherence, 2387-2396. \n \n . CC-BY-NC-ND 4.0 International licenseIt is made available under a \n is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)\nThe copyright holder for this preprint this version posted March 21, 2023. ; https://doi.org/10.1101/2023.03.16.23287347doi: medRxiv preprint","source_license":"CC0","license_restricted":false}