Embattled Empowerment: A qualitative investigation of mental health and psycho-social wellbeing after a diagnosis of endometriosis

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Mitchell, Kayleigh S. Sheen, Sergio A. Silverio This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-8174455/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract Endometriosis is a life-altering condition and whilst much of the research has focused on the severity and management of symptoms, treatment options, and the broad impact on perceived quality-of-life, there remains a gap in understanding the condition and obtaining a diagnosis from a mental health perspective. The present study aimed to explore the impact of endometriosis on women’s mental health and psycho-social wellbeing. Semi-structured interviews were conducted with 18 women and analysed through a Grounded Theory approach. The analysis generated the theory ‘Embattled Empowerment’ which focused on a necessary sense of self-advocacy women discussed throughout interviews and emerged from four inter-related themes: ‘Fighting a Battle in Isolation’, ‘Shadows of Fear, Glimmers of Hope’, ‘Compelled into Being My Own Advocate’, and ‘Caution, Candour, but Not Conflation’. The theory ‘Embattled Empowerment’ portrays a sense of self-advocacy which seemed necessary as women navigated challenges posed by endometriosis, often stemming from the physical impact of the condition as well as the emotional toll it caused. These discussions underscored the need for a more holistic approach to women’s healthcare, as it seems crucial women are provided with psycho-social resources and the opportunity to address emotional wellbeing during every healthcare touchpoint. Sexual & Reproductive Medicine Women's studies Women’s health Endometriosis Diagnosis Mental health Psycho-social wellbeing Qualitative research Interviews Grounded Theory Analysis Figures Figure 1 Figure 2 Introduction Endometriosis is a chronic condition characterized by the growth of endometrial-like tissue outside of the uterus. During hormonal changes, the tissue reacts like endometrium would, causing bleeding and subsequently inflammation and scarring (Denny & Mann, 2007 ). Endometriosis arises across the reproductive lifecourse, and includes a range of clinical presentations, including chronic pelvic pain, fatigue, dysmenorrhea (painful periods), dyspareunia (pain during sexual intercourse), dysuria (painful urination), dyschezia (painful bowel movements), and issues surrounding fertility (Eisenberg et al., 2018 ); all symptoms which overlap with other conditions. Global prevalence of endometriosis is approximated at 10% of females of reproductive age (World Health Organization [WHO], 2023 ). However, this number may be conservative, as globally, it takes women 7–9 years to receive a formal diagnosis often due to the normalization of menstrual-related pain among women, family members, and healthcare professionals (HCPs; Ghai et al., 2020 ). For many women, an endometriosis diagnosis is explored after seeking care for pain or difficulty conceiving (Young et al., 2016 ). Amongst individuals with endometriosis, it is estimated that 30–50% of women experience infertility, although the relationship between the two conditions is not fully understood (Bulletti et al., 2010 ). Treatment for endometriosis encompasses pain medication and hormonal therapy (including the use of contraceptives); surgical interventions aimed at removing endometrial lesions; and in a minority of cases, when medication or minimally invasive surgeries fail to alleviate severe symptoms, women may choose to undergo a hysterectomy – potentially coupled with the removal of their ovaries – as a final means of managing the condition effectively (Mayo Clinic, 2018). Endometriosis does not exist in isolation, especially when considering the impact on both physical and reproductive health. Women with endometriosis are more vulnerable to depression and anxiety, often due to the condition’s uncertain prognosis and its impact on fertility and personal relationships. Its often debilitating pain can further restrict participation in social and sexual activities and require time away from work, education, and exercise (Culley et al., 2013 ; Denny, 2009 , Facchin et al., 2015 ). Whilst much endometriosis research has focused on the severity and management of symptoms (Kor et al., 2020 ), treatment options (Brown & Farquhar, 2015 ), and the broad impact on quality-of-life (Warzecha et al., 2020 ), there remains a gap in understanding the condition and its diagnosis from a mental health perspective. The present study therefore aims to explore the emotional and psychological effect of endometriosis in more depth, via interviews with women diagnosed with endometriosis, to seek a better understanding of the unique experiences of individual women and the mental health resources offered and/or accessed as a result. Methods Study Design We present a qualitative study, using semi-structured interviews subjected to a Grounded Theory Analysis to collect and collate individual narratives and develop a theory of psycho-social experiences of an endometriosis diagnosis. We adopted a lifecourse approach to theoretically situate the work. This approach was used in the sense where endometriosis and its effects (physical, psychological, social) were considered ‘exposures’ and life experiences (fulfilment, relationships, overall health) as outcomes (Missmer et al., 2021). Lensing the lifecourse in this way is helpful in studying the long-term impact of endometriosis, especially given its status as a chronic health condition. Further, the idea of a lifecourse ‘rupture’ was explored, referring to a negative deviation from the expected trajectory of a woman’s lifecourse. When a rupture take place, a transition often follows, as it moves a woman from a trajectory which was expected to one which is unexpected (Silverio, 2022 ). In the context of endometriosis, a rupture may represent moments where the condition significantly affects a woman's physical and mental health as well as her psychological and social wellbeing – for example, the onset of symptoms, the inability to conceive, the receipt of a clinical diagnosis, or the impact of menopause on symptoms. However, rather than these pivotal points arriving as rapid, they are often chronic. The shift in identity, therefore, does not happen suddenly, as much of the condition is grounded in being inconsistent. Given the paucity of literature focused on understanding this phenomenon from a qualitative perspective, Grounded Theory Analysis (Glaser & Strauss, 1967 ) was employed to explore the relationship between endometriosis and mental health. This methodology involves engagement with the data, allowing for the generation of a theory regarding the given population – women with endometriosis. We approached grounded theory analysis with a post-positivist research paradigm, whereby it is assumed a reality exists external to the researcher and participants (Levers, 2013 ), and should be accepted without need of quantification or justification through evidence. Within this research paradigm, a critical realist ontology (Howard-Payne, 2016 ) was adopted emphasizing the belief that reality exists independently of the human thoughts and experiences; and allowing us to piece together what we, as researchers, can understand, whilst also recognizing the significance of social and cultural factors in shaping our understanding of reality (Levers, 2013 ). Furthermore, an objectivist epistemological stance was held (Crotty, 1998 ) leaning on “communicating any predispositions, maintaining neutrality, and ensuring that findings fit with preexisting knowledge” (Doucet et al., 2010 , p.300). With respect to positionality – both researcher position within the data and reflexive judgement were considered. For our position within the data, the team comprised a student researcher with a background in public and global health [JMM] and two women’s and reproductive health experts [SAS, KSS]. Cognisant of our own experiences of healthcare systems (both in the UK and USA), descriptive bracketing was undertaken (Gearing, 2004 ), whereby personal perspectives were set aside throughout data collection and analysis, only to re-introduce the interpretive voice during the post-analytic phases of the write-up. Whilst it is not possible to be completely objective, this process, in turn, helped in minimizing bias, enhancing validity, and building trust with participants. Being empathic in our reflexive judgement allowed for a critical appraisal of the data collected; whilst considering socio-cultural norms and wider societal pressures on participants' lifecourses and the narratives they shared. Practicing reflexivity does not mean limiting emotional reactions to data, but rather being self-aware of such, and working to mitigate bias when shaping research findings. We worked with a national charity: Endometriosis UK, to garner input on the study documentations and then publicize the study more broadly across the UK. This study obtained ethical approval from King's College London Health Faculties Research Ethics Subcommittee on 15 May 2023 (ref:-HR/DP-22/23-36030) and was subsequently lodged with the London School of Hygiene & Tropical Medicine MSc Research Ethics Committee (ref:-29246). Recruitment, Participants, and Data Collection Participants for the study were recruited through social media platforms. Women had to meet two specific eligibility criteria: (1) being over the age of 18; (2) self-reported having received a clinical diagnosis of endometriosis prior to the interview. This approach utilized social media and charitable network advertisement with purposive sampling, allowing for the intentional selection of individuals possessing these characteristics, and thus securing a relatively homogenous participant group necessary for Grounded Theory studies. Participants were engaged in semi-structured interviews (McIntosh & Morse, 2015 ) on-line or in-person (for participants local to the researcher), between May and July 2023; and following standard protocols for conducting sensitive, challenging, and difficult qualitative research (Silverio et al., 2022 ). Interviews covered three distinct areas: the period preceding the diagnosis, the period following the diagnosis, and the specific impact on mental health. The semi-structured nature of the interviews allowed for open-ended questions, providing participants with the opportunity to freely narrate their stories, whilst still adhering to the research interview schedule (Galletta, 2013 ). Alongside the set questions, probing questions were incorporated into the interview guide, providing the researcher with the flexibility to explore relevant areas as necessary. Interviews were digitally recorded, transcribed, and pseudo-anonymized; with handwritten ('field’) notes being taken and added onto the base of transcripts to provide additional context and insights (Montgomery & Bailey, 2007 ). Data collection ceased when data saturation (i.e. similar information emerging from later interviews) was reached (Guest et al., 2006 ), which was assessed at 18 interviews. All participants provided demographics (Table 1 ) and identified as female. Most participants were White (n = 16; 89%), heterosexual (n = 14; 78%), and reported being married (n = 8; 44%) or single (n = 7; 39%). A third of women (n = 6; 33%) reported a religious faith: one Hindu; five Christian. Half of the women had been diagnosed with a mental health condition (n = 9; 50%), with two of these women seeking therapy and four women seeking therapy and taking medication for their diagnosed mental health condition. One additional woman was not diagnosed with a mental health condition but was seeking therapy in relation to their mental health. Women were 24–56 years of age (M = 37.7 years) at the time of interview. Endometriosis diagnoses were received 0–27 years ago (M = 8.4 years). Table 1 Participant Demographics Pseudonym Age (at time of Interview: 2023) Year of First Diagnosis with Endometriosis Marital Status Sexuality Ethnicity Clinical Mental Health Diagnosis In Receipt of Therapy for Mental Health Prescribed Medication for Mental Health Michelle 48 1996 Married Heterosexual White British No No No Scarlett 56 1998 Married Heterosexual White British No No No Tessa 46 2003 Single Heterosexual White British Yes: Depression & Anxiety Yes Unclear Leila 42 2006 Divorced Heterosexual White British Yes: Depression & Anxiety Yes Yes Helen 46 2006 Married Heterosexual White No No No Margot 41 2015 Married Heterosexual White Asian Yes: Anxiety Yes Yes Gabriella 31 2016 Co-habiting Asexual British Pakistani Yes: Post Traumatic Stress Disorder, Panic Disorder, Anxiety, Depression No Yes Serena 34 2016 Single Heterosexual White British Yes: Post Traumatic Stress Disorder Yes No Halle 35 2017 Single Heterosexual White Yes: Depression No No Emilia 47 2018/19 Married Heterosexual White European Yes: Depression Yes Yes Amy 24 2020 Single Bisexual White Latina No Yes No Natalie 36 2020 Married Heterosexual White No No No Tara 29 2021 Single Heterosexual Indian No No No Maya 27 2022 Engaged Heterosexual White British No No No Maria 43 2022 Single Heterosexual White British No No No Madeline 27 2022 Single Bisexual White British No No No Amara 34 2022 Married Heterosexual White British Yes: Generalized Anxiety No No Katharine 32 2023 Married Homosexual White British Yes: Generalized Anxiety & Depression Yes Yes N/B. All characteristics are self-reported by participants; Table organized by Year of Endometriosis Diagnosis. Data Analysis Interview data were analysed by one researcher [JMM] using a modified grounded theory analysis approach (Silverio et al., 2019 ). This approach, whilst remaining faithful to Classical approaches to Grounded Theory (Glaser & Strauss, 1967 ; Glaser, 1992 ) data are coded following a constant comparison methodology: first line-by-line with verbatim codes, then focused as more descriptive coding, then subsequently developing analytic super-categories, followed by emergent interpretive themes, and finally generating a theory. In terms of the theory, the consideration of the relationship between themes allows for a theory to emerge (Glaser, 2001 ). A second form of saturation was also considered here: theoretical saturation which aided in the assessment of whether themes derived from the dataset were adequately supported by data (Glaser, 2001 ) and therefore gave confidence to the final theory. Results This Grounded Theory Analysis resulted in four themes (with respective super-categories; Fig. 1 ): 1) Fighting a Battle in Isolation (Dismissal by Healthcare Professionals, Feelings of Isolation, ‘Blob Monster’ Depression), 2) Shadows of Fear, Glimmers of Hope (Dominating Sense of Fear, Unpredictability of Endometriosis, Glimmers of Hope), 3) Compelled into Being My Own Advocate (Relief of a Diagnosis, Grieving a Life I Assumed I Would Have, and Empowerment), and 4) Caution, Candour, but Not Conflation (The Danger in Conflation, a “Woman’s Problem”, The Mental/Physical Health Interplay). Each theme is presented below, with representative quotations embedded. Fighting a Battle in Isolation This first theme focused on feelings of isolation which arose as a result of navigating endometriosis, its symptoms, and effects. Many women recounted stories of dismissiveness by HCPs both prior to receiving a diagnosis as well as the period following. Receiving the diagnosis in and of itself was often noted as a challenging feat, as professionals would often attribute symptoms to typical menstrual cycle discomfort. “But you go to the GP, and they just say, ‘Oh you are fat. If you lose some weight, your periods will get lighter’. Or they just brush it under the carpet. And there is also a sort of feeling that you shouldn’t go to the GP because it is just periods” – Halle In the time following the diagnosis, treatment options would often span hormonal therapy to laparoscopic surgery to remove endometrial lesions. For those cases where surgical teams were unwilling to operate further, ‘getting pregnant’ seemed to be a common, yet unhelpful, recommendation. “And because it had spread to other organs and organs that they weren’t willing to operate on, I was still under the care of the clinic and at that point, their recommendation was ‘Well, get pregnant. And that will take care of it’. And they would just keep saying that to me again and again. ‘Well why don’t you just try and get pregnant?’ And we did try and get pregnant, and it was an excruciatingly painful and emotional year……… And it was just a painful experience from all ends which was why we just stopped because I couldn’t deal with the pain any more. It was excruciating and the emotional rollercoaster was unhelpful as well.” – Helen However, many women felt dismissed by HCPs when discussing treatment, and in many cases, this discussion would result in quite drastic or radical treatment such as suggesting a full hysterectomy. “I saw the consultant who pretty much tried to say that the MRI would probably be over-exaggerating, did an internal ultrasound, said, ‘Well it all looks fine to me. Look at your age, you are not going to have kids, just have a hysterectomy’, and I was just like so taken back.” – Maria Often, feelings of isolation would be undermined by the difficulty women faced in navigating care, and delays surrounding the healthcare system. Such delays intensified feelings of uncertainty around the condition’s progression, as well as a sense of neglect by the healthcare system. “‘Let’s do an MRI to find out if it is expanding or spreading’. I was like, ‘Okay, fine’. Then I said, ‘Okay, when is the surgery in August?’ He said, ‘Not August, honey, six to nine months more you have to wait’. I was just devastated. Today, I am better, but yesterday, I was completely devastated. I couldn’t believe it.” – Emilia “When you have already been through ten years of waiting. Then, once you get a diagnosis, you join another list, it feels barbaric. You feel like, ‘God, I cannot deal with this. One day more feels too much. It has been so long’.” – Amara The extent of the pain and its impact on quality-of-life was noted to bring about feelings of isolation, loneliness, and depression. For some women, endometriosis also played a negative role in partner relationships, as they felt their partners lacked understanding and support, which also seemed detrimental to sex lives. “I think because a lot of it was so directed at myself, something that I must be doing wrong for a long time, so I often felt very sad or depressed or low, and I think the anger has only really come out more recently and I think that therapist that I have been working with more recently helped me get in touch with that a little bit more because I think I found it quite hard to express that. I just had got so used to it being my fault that relationships were not working because I could not have sex.” – Amara In addition, the lack of understanding and growing desensitisation from partners made the experiences of endometriosis increasingly isolating, especially as symptoms worsened. “In terms of relationships, I think it really took a toll. I had a long-term relationship through my university years, and he just became completely desensitised, unsympathetic, did not understand. I wouldn't say it was the reason why things broke down, but it was definitely a factor. It was like ‘Oh god, this again… Now I've got to look after you again’. I can remember crawling down our hallway in our apartment trying to get his attention, because I could barely move, and him just pretending he couldn't hear me. It’s that feeling of helplessness.” – Michelle For some, the way they felt about their body also affected their desire to meet potential partners. “And pre-surgery, I just didn’t want to even look at a man. I didn’t want even to think that anything would possibly be touching that area of my body. I just felt sore, sensitive, and unclean.” – Halle Painful sex also played a role in affecting intimacy and partner relationships, creating another pathway to feelings of isolation. “I’ve been in relationships that have been quite unhealthy, in terms of quite manipulative and quite controlling, and so when sex is always very painful, that I couldn’t talk about… That, I couldn’t express… So, I could talk about the endometriosis, and it being painful, but it was just like, ‘Well, that’s just a normal thing, we’re not really that interested. Just you deal with that, and that’s nothing to do with us’, sort of thing.” – Tessa However, other women also discussed supportive partners who assisted with pain management and were patient throughout journeys to diagnosis, treatment, and sometimes motherhood. “I think probably that’s why he’s my husband, he was like the first person I met who would be very understanding like when I was unwell, and he would know everything. Usually before I would not talk about it, I would just hide in the bathroom. So, I think for that I’m always really thankful for him because I mean we always had a conversation about it. Yes. If not, I guess it may be better because I could tell him if I was in pain and stuff like that. So, I think it made it better for me.” – Natalie With friends, the extent of pain would often dictate ‘social energy’. For those women wanting to get pregnant, the impact of endometriosis on fertility would lead some women to feelings of envy and embarrassment towards those female friends who seemingly became pregnant without challenge; further isolating them from their social networks. “Putting myself back there… I wouldn't talk to my friends, and I wouldn't talk to my best friend. I could not… She had two children during this period, and I think not being able to share it, not feeling like anyone would really understand, but also feeling like it was something I wanted to hide, because feeling like your body doesn't do the right things, that you failed in some way… So, I'm sure it's mostly connected to the… Not the experience of pain and heavy periods but more the effect on fertility. That was something I didn't feel I could talk about. I didn't share it with my family, didn't share it with my parents. I think my dad still doesn't know. My mum only knew that I had IVF after I got pregnant.” – Michelle Through interviews, women narrated a story of roadblock after roadblock when navigating endometriosis and the maze-like healthcare systems within which they were being investigated. Such feelings of low mood seemed to be undermined by an inability to feel heard by professionals, connect or feel supported by those individuals in their circle, or participate in social activities given the extent of symptoms and pain. “Just always feeling a bit on edge, and I think that, again, came from this constantly questioning myself and worrying about what other people were thinking, worrying about being believed, so yeah, this constant state of anxiety. I think because a lot of it was so directed at myself, something that I must be doing wrong for a long time, so I often felt very sad or depressed or low, and I think the anger has only really come out more recently.” – Amara “Yes, it’s horrible. The constant pain. I think the volatility, some days, I am usually a happy and positive person. But sometimes, I just go completely down. I think it is that thing, not having a normal day-to-day living.” – Emilia One woman summarised these feelings of depression by referring to her own as her ‘blob-monster’, because of the way she brought the two (endometriosis and depression) together. ‘On the blob’ is a vulgar-slang term in the UK for menstruating, with ‘monsters’ (sometimes ‘demons’), being colloquially used for mental health issues. As she mentioned, the endometriosis completely fed into the depression given its all-encompassing effect on her quality-of-life. “I think the endometriosis fed the depression because your life is being taken over by this monster. And so, pre-endometriosis diagnosis – and I read a lot about depression because I like to read a lot about it and understand what’s wrong with me – I read a lot about depression and different ideas of depression. And I can remember, somebody called it like, the black dog – their black dog was depression. I thought of it as a sort of weird bloody monster… like a blob-monster, that was my depression. And I think it was linked to the endometriosis and the heavy periods and it just fed… the endometriosis pre-diagnosis just fed into that sort of like inability to do anything because you are just so tired from managing the pain. Yeah, I think I was depressed beforehand. But I think when endometriosis started getting bad and the doctor’s going ‘You are just fat. There’s nothing wrong with you, you’re just fat’, but I couldn’t do anything because I was exhausted from the endometriosis and depression, and it fed… it just got bigger and bigger and bigger.” – Halle Shadows of Fear, Glimmers of Hope The second theme explores a dominating sense of fear up against small glimmers of hope. Women voiced this ‘shadow’ of fear as they talked through feelings of anxiety and panic which seemed to accompany endometriosis. Often, there were stories of difficulty in managing symptoms and a negative impact on quality-of-life. “I cannot overstate how severe it was - how much I was bleeding, the fact that I was throwing up from the pain and blacking out from the pain on the train into work.” – Halle Confusion surrounding flare-ups was noted, and the concern about what symptoms meant for their body and their health. “And then I think because I was in this, kind of, I still had the old coil, so I was still getting these flare-ups, it just meant that every time I had a flare-up, I felt that confusion again and that anxiety around what that meant.” – Madeline Given how unpredictable and inconsistent endometriosis is in its presentation and course – this anxiety seems grounded in the lack of foresight into the severity of symptoms and the condition’s impact on fertility. “So, his thing was, change the coil, see how that does. And thankfully, that does seem to have stabilised it. I have occasional periods around when my time of the month is where I don't feel so great. But generally, I'm okay. And he was, like, ‘If that doesn't work, we can schedule an operation’. But he was, like, ‘I would recommend that before you want to have kids, schedule in maybe, like, two years prior to having this operation’… And I think because suddenly I was being told, ‘Oh, wait, you're going to have to schedule a surgery’. It’s all worked back. And also, you have someone saying, ‘You might want to start thinking about in your late twenties, early thirties’, and I'm going, ‘I can’t. I'm a PhD student. I can't do my late twenties. I'm going to finish my PhD at 28. I have no savings. I have no money. I cannot afford to have a child at that time’. So, you've got the panic of finances, panic of do you do what you actually want to do.” – Madeline The unknowns relating to fertility and the additional planning as a result also arose as a consistent theme of anxiety and panic throughout interviews. For some women, the anxiety around whether they would be able to carry their baby to full-term was an ongoing worry. “Then going into a pregnancy knowing you have endometriosis, obviously when you look up endometriosis and pregnancy, there is lots of stuff about miscarriage, so I think I had really really bad anxiety at the start of my pregnancy, that I was going to miscarry. Every day I was checking the statistics on miscarriage at each point in pregnancy just worrying about that a lot. Obviously, failing to get pregnant as well. Every month that disappointment as well.” – Amara Concerns about motherhood were sometimes experienced as feelings of inadequacy and anxiety as women grappled with being unable to fulfil what they perceived as an essential part of womanhood. “I don’t know, just feeling somehow inadequate. Feelings of inadequacy that I wouldn’t be able to fulfil my female function and anxiousness about how that affects my relationship with my husband, his family, my family, all that kind of thing.” – Scarlett There were also discussions around loss of control given the powerful and often ambiguous impact endometriosis has on the body. One woman discussed her choice to be child-free, however, when she discovered her ability to conceive might be compromised due to surgery, it required her to be reflective of what this meant. “But when I had my first laparoscopy and they told me that doing this kind of surgery can affect your fertility, for that one moment, I felt that was my choice that I didn’t want to have babies but, what if it’s taken away from me?” – Gabriella However, at times, there were also glimmers of hope, especially when discussing the condition with supportive and uplifting HCPs. “I met this really lovely gynaecologist who said, ‘It’s a weird thing, endometriosis’, she said, ‘sometimes I see patients with only a little bit who just can’t get pregnant and other times I see people with endometriosis who do have children naturally’. She said, ‘It’s a very odd thing’. And that was quite comforting to me because I had been told, ‘Oh God, you’ve got a really bad case’. I was like, ‘Oh!’ And then it was nice for her to say, ‘Well don’t read too much into that because I’ve seen people with really bad endometriosis just have children naturally’. So, it was nice to hear some glimmers of hope there.” – Scarlett Caution, Candour, but Not Conflation The third theme delves into the tension between physical and mental health, highlighting the challenge in considering both without conflating them. In the narratives which arose out of interviews, a consistent discourse emerged: the physicality of endometriosis as a condition and its impact on wider physical health significantly impacts psychological wellbeing – with detrimental effects – and can often lead to periods of mental ill health. “And it was after getting diagnosed with endometriosis and getting the surgery has been so much better. So, my mental health was awful in the period beforehand because you are being… I felt like I was being gaslighted by the GP. And because I was so focused on the pain and everything else, I couldn’t function properly. And I don’t know whether the depression helped in the fact that people were telling me ‘Everything’s fine, or ‘It’s just you are fat, you are just whatever’, so you are thinking that’s what it is. I mean, I was off fluoxetine at this point because I got diagnosed in Sheffield and then moved down to London and stopped taking it and whatnot. So, after the surgery, as I said, that sense of satisfaction… but it wasn’t really satisfaction, it was like a relief to know that you had been heard and believed and that you knew something was wrong… and it was, something was wrong.” – Halle In the case of endometriosis, the condition’s physical effects bring about feelings of despondency and isolation due to a lack of support and validation. Further, the burden of navigating endometriosis on a daily basis fuels anxiety and panic. Women consistently grappled with questions of whether they had enough sanitary products to last the day, whether they would make it through the workday without bleeding through their clothes, whether their partner would leave them if they could not have what they perceived to be a normal sex life, and whether they would be able to get pregnant or would experience one or more pregnancy losses. “Because there’s of course the, once you know that you’ve got endometriosis, and there’s dealing with that. But then there’s also, I still had endometriosis when I didn’t know that I had it. So, the dealing with what endometriosis causes, which, certainly for me, it was incredibly heavy periods, with a lot of symptoms around my periods. All of this other pain going on, that you’re just meant to get on with. So, I did just get on with, but then you’re constantly trying to work out how do you just get on with it, and feeling anxious all the time. So, feeling anxious about the practicalities of do I have enough Tampax? I need Tampax and sanitary pads at times in my period, because literally, I’d be having to change a super plus Tampax every hour. And a class might last more than an hour. Sleeping, how you manage that. Getting up in the night, setting my alarm early, to be able to get up in the night to change my Tampax, even if I’m wearing sanitary pads. It was so heavy.” – Tessa Above all, granting space and resources to talk through this emotional toll is often necessary, without too quickly medicalizing this toll as a mental health diagnosis. “I was feeling very nauseous, I was very bloated. I was getting asked, was I pregnant? I was in a lot of pain. I went to the GP… a very good GP surgery……… And I was dismissed thirteen times for just being stressed. So that was very stressful!” – Serena “Because it is life changing. You don’t go through other life changing moments without talking it through with somebody first. So, I think there needs to be more awareness around that and the importance of offering that space and that help.” – Amy While it remains important to not conflate the two, recognizing the emotional toll of endometriosis is crucial, as navigating a chronic condition on a daily basis marks a significant change to the expected trajectory of one’s lifecourse. From interviews, a nuanced understanding of the relationship between the two then seems significant, and must be approached with both candour and caution; as one woman noted – there is also a danger in disregarding the mental health aspect of women’s healthcare. “I think we need to be careful not to conflate them too much. Because I do worry sometimes that it’s another way of dismissing things. It’s sort of going, ‘Okay, if you’ve got an issue that’s related to physiologically being a woman, then you must have mental health issues. And if you’ve got mental health issues, it’s because you’re a woman, in some way or another.’ So, I do worry sometimes that they get conflated. I also would like to see more understanding of the impact on mental health, without necessarily being diagnosed with a mental illness.” – Tessa Compelled into Being My Own Advocate The fourth theme explores the idea of being compelled into being one’s own advocate, encompassing the journey from diagnosis to the ensuing grief which followed, and then finally, eventual feelings of acceptance of their condition and empowerment. For many women, receiving the diagnosis in itself brought a wave of relief, as it was validation something was – and had always been – clinically wrong. “I think getting the diagnosis for me, I actually thanked the consultant with a big beaming smile on my face and she was like, ‘I don’t think anybody has ever been so excited’, and I was just like, ‘No this is such a relief to know I’m not insane and somebody believes me, and somebody has found what the problem is!’” – Maria “So, after the surgery, as I said, that sense of satisfaction… but it wasn’t really satisfaction, it was like a relief to know that you had been heard and believed and that you knew something was wrong… and it was, something was wrong. And the high of that kept me going for quite a while. The high of that helped me all the way through the surgery.” – Halle However, with the relief of the diagnosis also came grief for some women, especially for those who envisioned a life as a mother. A reluctance to discuss this grief resonates with societal norms tied to womanhood. Such norms often revolve around an assumption that motherhood is a crucial milestone defining a woman's completeness and worth, with deviation from those societal expectations rendering them ostracized. “I’m now in my mid-40s, and I’m never going to be a parent. Not the way that I wanted to be. Not to babies, and having a family, and all that sort of stuff. That’s not going to happen. And I still haven’t fully come to terms with that. And when I’ve had counselling and stuff like that, I’ve touched on it, but actually I’ve realised it’s the one thing that I don’t really talk about. It’s immediately extremely upsetting, and I’ve just kind of avoided it. It’s come up a little bit, and I’ve just gone, ‘I know this is something that I need to deal with’, but it’s not like, ‘Yes, okay, we’ll talk about it for five weeks, or we’ll talk about it for twelve weeks’. This isn’t about CBT, this is grieving, ultimately. And it’s grieving the loss of a life that I wanted, and a life that I assumed that I would have.” – Tessa An inability to get pregnant was not always the full and final story, however, as some women did not want to have children due to the possibility of children growing up in a negative environment, becoming caretakers, or receiving a future diagnosis of endometriosis. “And with my mental health, my physical health, I don’t want to… it can get toxic to a point, you know where you constantly… I think I have changed now but there was this point where I was constantly negative about everything. And I wouldn’t want a child to live in that kind of environment.” – Gabriella When reflecting on their experiences, many women voiced a story of empowerment, as they gained confidence expressing needs in relationships and in healthcare spaces. “I’ve become more unapologetic. I don’t give a shit about anyone’s… sorry… I don’t care about anyone’s opinions. It is who… and I think I know my body more now. I know my body more; I know how it works, now, especially maybe during the COVID time when everything was shut, and I became more friends with my body and realised that it is telling me symptoms. People will tell me, ‘Oh why don’t you do yoga? Why don’t you walk?’ They are things I can’t do. There are things that I can do, and I can’t please people. So, I think, as a partner, as well, I’ve been more vocal… I’ve communicated more. And it has given me the freedom to talk about my body without shame.” – Gabriella The idea of simultaneously embattled by their experiences and equally empowered by the fact they have survived them, lends itself to the narrative of women achieving a state of confidence and authority without taking anything away from all which they have endured, and continue to endure on daily basis. “So, I think I’ve just become a little bit of a toughened endo warrior now that will shout it to the hills and just go… When people go, ‘Oh I’ve got really bad periods’, I go, ‘Don’t get complacent. Keep going, just keep pushing’, because no-one should have to do what I did for 26 years. – Maria Discussion Summary of Main Findings Grounded Theory Analysis allowed for the emergence of a theory: ‘Embattled Empowerment’ which focuses on the sense of advocacy and empowerment women voiced throughout interviews – not necessarily out of desire – but rather due to necessity. The concept of self-advocacy seemed crucial for women as they navigated the challenges of receiving an accurate diagnosis with often inconsistent support from healthcare providers, friends, family, and at times, partners. Participant narratives shed light on the complex interplay between mental and physical health in the context of endometriosis, a relationship illustrated in the below diagram. For many women the dismissal of symptoms as ‘stress’, ‘anxiety’, or ‘normal menstrual cycle discomfort’ led to a psycho-emotional response, which often delayed the subsequent diagnosis. This response was often characterized by sentiments of isolation and lowness due to a lack of support; anxiety and panic around symptom management, the condition’s impact on fertility; and eventually, feelings of empowerment given the persistent struggle women endured and continue to navigate. Comparisons with Previous Research The theory ‘Embattled Empowerment’ speaks to this danger of conflation. Labelling emotion as a mental health disorder perpetuates the stereotype of depression, anxiety, and panic being a ‘woman’s problem’. Noting the increased medicalization of women’s everyday stress or upset others have written about (Ussher, 2010) we provide new evidence for how women’s distress continues to be communicated as a pathology to be expected within the female experience. Such categorization not only reinforces the notion women are predisposed to such diagnoses (Silverio, 2021), but also elevates the likelihood that a physical health condition – like endometriosis – might be overlooked (Hudson, 2022), especially when HCPs have limited knowledge of the condition. However, it is also important to recognize the absence of support can have a detrimental impact on those women navigating a chronic health condition and/or symptoms (Kundu et al., 2015), potentially leading into periods of mental ill health (Chen et al., 2016). Similarly, discourses of endometriosis have been reported as ‘brokenness’, ‘abnormality’, and ‘disbelief’ within the healthcare space (Bullo, 2018). This repeated dismissal by HCPs whilst attempting to receive a diagnosis, very much aligning with the findings of this study, with a ‘lack of agency’ being voiced throughout interviews in the present study as well, but participant outlooks often became more positive after receiving the official diagnosis. It was after this rupture point that many women began discussing feelings of pride, newfound confidence, and empowerment, which only emphasized the importance of feeling heard and validated in the clinical setting. Often, this confidence translated into increased transparency and self-advocacy within relationships, social circles, and the healthcare space as found previously (Fernley, 2021). Terms such as ‘warrior’ or ‘tenacious’ emerged, highlighting the significance in women asking for support, setting boundaries, and fighting for treatment and medical support, which in turn, also aided in emotional and psychological wellbeing. This sense of empowerment and self-advocacy amongst women, however, was not an intentional pursuit, but rather realized given the set of circumstances they faced. Dismissal of women’s pain in the healthcare space has been increasingly documented over the last decade. A notable example is the ‘Gender Pain Gap Index Report’, which disclosed that a significant majority of UK female ‘pain sufferers’ felt that their pain was consistently overlooked or invalidated; and attributed the existence of the ‘pain gap’ to experiences of being viewed as ‘emotional’ when discussing such pain (Nurofen, 2022). The paradox in this, of course, is as noted earlier: Labelling women with symptoms which cause them psychological distress as ‘emotional’ not only fails to address the underlying issue, but also exacerbates their isolation and increases the risk of mental ill health. Within the cohort of 18 participants – nine individuals had received clinical diagnoses of depression, anxiety, or related disorders. Whilst it would be overly simplistic to attribute these mental health diagnoses solely to endometriosis, the association seems clear – for many women, endometriosis manifests as an isolating, exhausting, and anxiety-inducing condition. In light of this, literature on ‘Candidacy Theory’ could prove helpful in understanding the interactions women have with healthcare services in pursuit of a diagnosis of endometriosis. Candidacy Theory outlines a framework of seven aspects which provide insight into how an individual, healthcare professionals, or both jointly might engender an environment of care seeking and navigation through particular health services (Dixon-Woods et al., 2006; Tookey et al., 2018). In the context of the current study, all participants identified as candidates for care, and consistently asserted this candidacy through appearing at appointments despite health service impermeability. However, determinations made by HCPs were often a deciding factor in whether participants received an endometriosis diagnosis, reflecting a somewhat over-exercised adjudicatory function. Such adjudications often dictated whether individuals would persist in their belief about symptoms and their determination to self-advocate. The diagnosis itself was a turning point for women, as it validated such symptoms, and allowed for continued progression through the system, including treatment and additional care. The UK has made significant progress in addressing women’s health concerns, with notable initiatives like the ‘Better for Women’ report (Royal College of Obstetricians & Gynaecologists [RCOG], 2019) and the 10-year ‘Women’s Health Strategy’ (Department of Health and Social Care, 2022). These strategic plans focus on integrated care, for instance, through the expansion of women’s health hubs or centres. Additionally, the RCOG, in partnership with Endometriosis UK, developed a ‘Menstrual Wellbeing Toolkit’ which offers evidence-based guidance for general practitioners in diagnosing, supporting, and managing those issues under the umbrella of menstrual health, including endometriosis (RCOG, 2019). The potential impact of this could include better awareness amongst HCPs, reduced diagnostic delay, and appropriate support for both physical and mental health conditions. It is imperative that specialist gynaecology services are available to all women and not pared back in the way they have been in recent years (Choo et al., 2014), and that women are asked about their psychological health and emotional wellbeing in every appointment – from primary care visits to surgical interventions. This approach should be implemented regardless of whether a patient has a clinical mental health diagnosis, as any appointment is an opportunity for health professionals to check-in and provide information around forms of support – such as support groups, involvement of loved ones in care, alternative therapies (yoga, meditation), educational resources, and fertility counselling (Apers et al., 2018). Strengths, Limitations, and Future Directions The semi-structured format of interviews facilitated a participant-centred approach allowing for open-ended discussions. This approach empowered participants to share their lived experiences with endometriosis, authentically. The current study’s scope focused on UK-based females, and given this, the majority of participants received much of their care in the UK. This being said, a few participants also accessed care for endometriosis symptoms elsewhere – including Brazil, India, the USA, and The Netherlands. Given the UK focus, many of the conversations centred around the National Health Service [NHS], and therefore may not be generalizable to other countries. As the NHS is a publicly-funded system, waiting times for services deemed ‘elective’ are exorbitant. For many participants within this study, this was very much the case for both gynaecological and mental health care. As such, a handful of participants discussed accessing care – especially fertility treatment and mental health services – privately. Despite recruitment efforts, this study lacked ethnic diversity, which requires further exploration, as the findings may overlook unique experiences and perspectives of individuals from different ethnic backgrounds. The benefit of having used Grounded Theory is such that by changing one or more of the parameters such as population (UK-based women), phenomenon (endometriosis), or context (the NHS); the theory generated in this study can be ‘tested’ by changing one of those three parameters (Corbin & Strauss, 1990). Conclusion It is clear from the findings of this study that endometriosis is a life-altering condition due to the physical effects it has on the body as well as the impact on quality-of-life, mental health, and psycho-social wellbeing. Participant interviews revealed the extent of the emotional impact at every stage – from the onset of symptoms to the receipt of a diagnosis, to the condition’s impact on family, friendships, relationships with intimate partners, and finally, on fertility and identity derived from reproductive health and potential. Endometriosis can be all-reaching and all-consuming, and leave women feeling isolated, anxious, and in pain. It is because of how ubiquitous it is that it affects mental health. For many women, symptoms are painful and unpredictable, but they are also ‘hidden’ which makes it difficult for doctors to diagnose and loved ones to understand. It would be overly simplistic to attribute any of the mental health diagnoses women reported solely to the endometriosis, and in turn could misappropriate their mental health to a physical condition. However, it cannot be overstated how complex this condition is and the emotional toll and burden it carries. The theory ‘Embattled Empowerment’ tells the story of women fighting – for a diagnosis, for appropriate and timely treatment, for a voice in their relationships, and ultimately, for help. Although there is clearly an association between physical health and emotional or psychological wellbeing, healthcare systems must be careful not to conflate them. By medicalizing a valid emotional response, it dismisses the physiological legitimacy of endometriosis and the impact it has on the body, and may too easily attribute a mental health diagnosis. This is not to say a woman with endometriosis cannot be clinically depressed or anxious – but rather underscores the significance of a holistic perspective when understanding the interaction between physical and mental health. The situation therefore is held in tension, with practitioners needing to acknowledge the interplay between physical and mental health; understand that it is not always one which precedes the other; and legitimise the mental distress which may be present, but not dismiss the physical condition as a mental complaint. Regardless of whether an individual has a clinical mental health diagnosis, it seems crucial that adjudicatory authority is exercised cautiously and psycho-social resources – support groups, alternative therapies, and/or formalised therapy for more intensive cases – are shared at every appointment. Declarations All participants consented to participate and to their data being used in publications and other academic outputs. References American Society For Reproductive Medicine (1997) Revised American Society for Reproductive Medicine classification of endometriosis: 1996. 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Supplementary Files EndometriosisandMentalHealthStudyInterviewSchedule.pdf Interview Schedule Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. 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09:14:51","extension":"html","order_by":8,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":140835,"visible":true,"origin":"","legend":"","description":"","filename":"earlyproof.html","url":"https://assets-eu.researchsquare.com/files/rs-8174455/v1/5727faf1e2c056cb6b98e507.html"},{"id":97330912,"identity":"5b3ba2db-07d0-4b71-a9ed-062bd900ab87","added_by":"auto","created_at":"2025-12-03 09:14:50","extension":"jpeg","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":496742,"visible":true,"origin":"","legend":"\u003cp\u003eThematic Map of Super-Categories\u003c/p\u003e","description":"","filename":"floatimage1.jpeg","url":"https://assets-eu.researchsquare.com/files/rs-8174455/v1/87b07bb17576a89856913a87.jpeg"},{"id":97330918,"identity":"acee2833-6b8e-41a8-944d-f054fe062076","added_by":"auto","created_at":"2025-12-03 09:14:50","extension":"jpeg","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":190201,"visible":true,"origin":"","legend":"\u003cp\u003eThematic Map of Final Themes\u003c/p\u003e","description":"","filename":"floatimage2.jpeg","url":"https://assets-eu.researchsquare.com/files/rs-8174455/v1/7d35ec80320f6ea7614257db.jpeg"},{"id":97664775,"identity":"01ac9700-9cfb-4f6a-8062-b058a7b41285","added_by":"auto","created_at":"2025-12-08 09:14:09","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1409195,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-8174455/v1/07a8e21c-eadd-431c-8524-d63add4a6920.pdf"},{"id":97370130,"identity":"9a850e48-2935-49cb-a630-98be26637412","added_by":"auto","created_at":"2025-12-03 16:26:46","extension":"pdf","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":123823,"visible":true,"origin":"","legend":"\u003cp\u003eInterview Schedule\u003c/p\u003e","description":"","filename":"EndometriosisandMentalHealthStudyInterviewSchedule.pdf","url":"https://assets-eu.researchsquare.com/files/rs-8174455/v1/bbd408f939beaa18a3c8e29a.pdf"}],"financialInterests":"The authors declare no competing interests.","formattedTitle":"\u003cp\u003eEmbattled Empowerment: A qualitative investigation of mental health and psycho-social wellbeing after a diagnosis of endometriosis\u003c/p\u003e","fulltext":[{"header":"Introduction","content":"\u003cp\u003eEndometriosis is a chronic condition characterized by the growth of endometrial-like tissue outside of the uterus. During hormonal changes, the tissue reacts like endometrium would, causing bleeding and subsequently inflammation and scarring (Denny \u0026amp; Mann, \u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e2007\u003c/span\u003e). Endometriosis arises across the reproductive lifecourse, and includes a range of clinical presentations, including chronic pelvic pain, fatigue, dysmenorrhea (painful periods), dyspareunia (pain during sexual intercourse), dysuria (painful urination), dyschezia (painful bowel movements), and issues surrounding fertility (Eisenberg et al., \u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e2018\u003c/span\u003e); all symptoms which overlap with other conditions. Global prevalence of endometriosis is approximated at 10% of females of reproductive age (World Health Organization [WHO], \u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e2023\u003c/span\u003e). However, this number may be conservative, as globally, it takes women 7\u0026ndash;9 years to receive a formal diagnosis often due to the normalization of menstrual-related pain among women, family members, and healthcare professionals (HCPs; Ghai et al., \u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e2020\u003c/span\u003e). For many women, an endometriosis diagnosis is explored after seeking care for pain or difficulty conceiving (Young et al., \u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e2016\u003c/span\u003e). Amongst individuals with endometriosis, it is estimated that 30\u0026ndash;50% of women experience infertility, although the relationship between the two conditions is not fully understood (Bulletti et al., \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e2010\u003c/span\u003e). Treatment for endometriosis encompasses pain medication and hormonal therapy (including the use of contraceptives); surgical interventions aimed at removing endometrial lesions; and in a minority of cases, when medication or minimally invasive surgeries fail to alleviate severe symptoms, women may choose to undergo a hysterectomy \u0026ndash; potentially coupled with the removal of their ovaries \u0026ndash; as a final means of managing the condition effectively (Mayo Clinic, 2018).\u003c/p\u003e\u003cp\u003eEndometriosis does not exist in isolation, especially when considering the impact on both physical and reproductive health. Women with endometriosis are more vulnerable to depression and anxiety, often due to the condition\u0026rsquo;s uncertain prognosis and its impact on fertility and personal relationships. Its often debilitating pain can further restrict participation in social and sexual activities and require time away from work, education, and exercise (Culley et al., \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e2013\u003c/span\u003e; Denny, \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e2009\u003c/span\u003e, Facchin et al., \u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e2015\u003c/span\u003e). Whilst much endometriosis research has focused on the severity and management of symptoms (Kor et al., \u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e2020\u003c/span\u003e), treatment options (Brown \u0026amp; Farquhar, \u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e2015\u003c/span\u003e), and the broad impact on quality-of-life (Warzecha et al., \u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e2020\u003c/span\u003e), there remains a gap in understanding the condition and its diagnosis from a mental health perspective. The present study therefore aims to explore the emotional and psychological effect of endometriosis in more depth, via interviews with women diagnosed with endometriosis, to seek a better understanding of the unique experiences of individual women and the mental health resources offered and/or accessed as a result.\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003eStudy Design\u003c/p\u003e\n\u003cp\u003eWe present a qualitative study, using semi-structured interviews subjected to a Grounded Theory Analysis to collect and collate individual narratives and develop a theory of psycho-social experiences of an endometriosis diagnosis. We adopted a lifecourse approach to theoretically situate the work. This approach was used in the sense where endometriosis and its effects (physical, psychological, social) were considered \u0026lsquo;exposures\u0026rsquo; and life experiences (fulfilment, relationships, overall health) as outcomes (Missmer et al., 2021). Lensing the lifecourse in this way is helpful in studying the long-term impact of endometriosis, especially given its status as a chronic health condition. Further, the idea of a lifecourse \u0026lsquo;rupture\u0026rsquo; was explored, referring to a negative deviation from the expected trajectory of a woman\u0026rsquo;s lifecourse. When a rupture take place, a transition often follows, as it moves a woman from a trajectory which was expected to one which is unexpected (Silverio, \u003cspan class=\"CitationRef\"\u003e2022\u003c/span\u003e). In the context of endometriosis, a rupture may represent moments where the condition significantly affects a woman\u0026apos;s physical and mental health as well as her psychological and social wellbeing \u0026ndash; for example, the onset of symptoms, the inability to conceive, the receipt of a clinical diagnosis, or the impact of menopause on symptoms. However, rather than these pivotal points arriving as rapid, they are often chronic. The shift in identity, therefore, does not happen suddenly, as much of the condition is grounded in being inconsistent.\u003c/p\u003e\n\u003cp\u003eGiven the paucity of literature focused on understanding this phenomenon from a qualitative perspective, Grounded Theory Analysis (Glaser \u0026amp; Strauss, \u003cspan class=\"CitationRef\"\u003e1967\u003c/span\u003e) was employed to explore the relationship between endometriosis and mental health. This methodology involves engagement with the data, allowing for the generation of a theory regarding the given population \u0026ndash; women with endometriosis. We approached grounded theory analysis with a post-positivist research paradigm, whereby it is assumed a reality exists external to the researcher and participants (Levers, \u003cspan class=\"CitationRef\"\u003e2013\u003c/span\u003e), and should be accepted without need of quantification or justification through evidence.\u003c/p\u003e\n\u003cp\u003eWithin this research paradigm, a critical realist ontology (Howard-Payne, \u003cspan class=\"CitationRef\"\u003e2016\u003c/span\u003e) was adopted emphasizing the belief that reality exists independently of the human thoughts and experiences; and allowing us to piece together what we, as researchers, can understand, whilst also recognizing the significance of social and cultural factors in shaping our understanding of reality (Levers, \u003cspan class=\"CitationRef\"\u003e2013\u003c/span\u003e). Furthermore, an objectivist epistemological stance was held (Crotty, \u003cspan class=\"CitationRef\"\u003e1998\u003c/span\u003e) leaning on \u003cem\u003e\u0026ldquo;communicating any predispositions, maintaining neutrality, and ensuring that findings fit with preexisting knowledge\u0026rdquo;\u003c/em\u003e (Doucet et al., \u003cspan class=\"CitationRef\"\u003e2010\u003c/span\u003e, p.300).\u003c/p\u003e\n\u003cp\u003eWith respect to positionality \u0026ndash; both researcher position within the data and reflexive judgement were considered. For our position within the data, the team comprised a student researcher with a background in public and global health [JMM] and two women\u0026rsquo;s and reproductive health experts [SAS, KSS]. Cognisant of our own experiences of healthcare systems (both in the UK and USA), descriptive bracketing was undertaken (Gearing, \u003cspan class=\"CitationRef\"\u003e2004\u003c/span\u003e), whereby personal perspectives were set aside throughout data collection and analysis, only to re-introduce the interpretive voice during the post-analytic phases of the write-up. Whilst it is not possible to be completely objective, this process, in turn, helped in minimizing bias, enhancing validity, and building trust with participants. Being empathic in our reflexive judgement allowed for a critical appraisal of the data collected; whilst considering socio-cultural norms and wider societal pressures on participants\u0026apos; lifecourses and the narratives they shared. Practicing reflexivity does not mean limiting emotional reactions to data, but rather being self-aware of such, and working to mitigate bias when shaping research findings.\u003c/p\u003e\n\u003cp\u003eWe worked with a national charity: Endometriosis UK, to garner input on the study documentations and then publicize the study more broadly across the UK. This study obtained ethical approval from King\u0026apos;s College London Health Faculties Research Ethics Subcommittee on 15 May 2023 (ref:-HR/DP-22/23-36030) and was subsequently lodged with the London School of Hygiene \u0026amp; Tropical Medicine MSc Research Ethics Committee (ref:-29246).\u003c/p\u003e\n\u003cp\u003eRecruitment, Participants, and Data Collection\u003c/p\u003e\n\u003cp\u003eParticipants for the study were recruited through social media platforms. Women had to meet two specific eligibility criteria: (1) being over the age of 18; (2) self-reported having received a clinical diagnosis of endometriosis prior to the interview. This approach utilized social media and charitable network advertisement with purposive sampling, allowing for the intentional selection of individuals possessing these characteristics, and thus securing a relatively homogenous participant group necessary for Grounded Theory studies. Participants were engaged in semi-structured interviews (McIntosh \u0026amp; Morse, \u003cspan class=\"CitationRef\"\u003e2015\u003c/span\u003e) on-line or in-person (for participants local to the researcher), between May and July 2023; and following standard protocols for conducting sensitive, challenging, and difficult qualitative research (Silverio et al., \u003cspan class=\"CitationRef\"\u003e2022\u003c/span\u003e). Interviews covered three distinct areas: the period preceding the diagnosis, the period following the diagnosis, and the specific impact on mental health. The semi-structured nature of the interviews allowed for open-ended questions, providing participants with the opportunity to freely narrate their stories, whilst still adhering to the research interview schedule (Galletta, \u003cspan class=\"CitationRef\"\u003e2013\u003c/span\u003e). Alongside the set questions, probing questions were incorporated into the interview guide, providing the researcher with the flexibility to explore relevant areas as necessary. Interviews were digitally recorded, transcribed, and pseudo-anonymized; with handwritten (\u0026apos;field\u0026rsquo;) notes being taken and added onto the base of transcripts to provide additional context and insights (Montgomery \u0026amp; Bailey, \u003cspan class=\"CitationRef\"\u003e2007\u003c/span\u003e). Data collection ceased when data saturation (i.e. similar information emerging from later interviews) was reached (Guest et al., \u003cspan class=\"CitationRef\"\u003e2006\u003c/span\u003e), which was assessed at 18 interviews.\u003c/p\u003e\n\u003cp\u003eAll participants provided demographics (Table \u003cspan class=\"InternalRef\"\u003e1\u003c/span\u003e) and identified as female. Most participants were White (n\u0026thinsp;=\u0026thinsp;16; 89%), heterosexual (n\u0026thinsp;=\u0026thinsp;14; 78%), and reported being married (n\u0026thinsp;=\u0026thinsp;8; 44%) or single (n\u0026thinsp;=\u0026thinsp;7; 39%). A third of women (n\u0026thinsp;=\u0026thinsp;6; 33%) reported a religious faith: one Hindu; five Christian. Half of the women had been diagnosed with a mental health condition (n\u0026thinsp;=\u0026thinsp;9; 50%), with two of these women seeking therapy and four women seeking therapy and taking medication for their diagnosed mental health condition. One additional woman was not diagnosed with a mental health condition but was seeking therapy in relation to their mental health. Women were 24\u0026ndash;56 years of age (M\u0026thinsp;=\u0026thinsp;37.7 years) at the time of interview. Endometriosis diagnoses were received 0\u0026ndash;27 years ago (M\u0026thinsp;=\u0026thinsp;8.4 years).\u003c/p\u003e\n\u003cdiv class=\"gridtable\"\u003e\n \u003ctable id=\"Tab1\" border=\"1\"\u003e\n \u003ccaption language=\"En\"\u003e\n \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e\n \u003cdiv class=\"CaptionContent\"\u003e\n \u003cp\u003eParticipant Demographics\u003c/p\u003e\n \u003c/div\u003e\n \u003c/caption\u003e\n \u003cthead\u003e\n \u003ctr\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003ePseudonym\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eAge (at time of Interview: 2023)\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eYear of First Diagnosis with Endometriosis\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eMarital Status\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eSexuality\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eEthnicity\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eClinical Mental Health Diagnosis\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003eIn Receipt of Therapy for Mental Health\u003c/p\u003e\n \u003c/th\u003e\n \u003cth align=\"left\"\u003e\n \u003cp\u003ePrescribed Medication for Mental Health\u003c/p\u003e\n \u003c/th\u003e\n \u003c/tr\u003e\n \u003c/thead\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eMichelle\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e48\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e1996\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eMarried\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eHeterosexual\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eWhite British\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eScarlett\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e56\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e1998\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eMarried\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eHeterosexual\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eWhite British\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eTessa\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e46\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e2003\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eSingle\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eHeterosexual\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eWhite British\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes: Depression \u0026amp; Anxiety\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eUnclear\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eLeila\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e42\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e2006\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eDivorced\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eHeterosexual\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eWhite British\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes: Depression \u0026amp; Anxiety\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eHelen\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e46\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e2006\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eMarried\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eHeterosexual\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eWhite\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eMargot\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e41\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e2015\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eMarried\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eHeterosexual\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eWhite Asian\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes: Anxiety\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eGabriella\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e31\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e2016\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eCo-habiting\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eAsexual\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eBritish Pakistani\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes: Post Traumatic Stress Disorder, Panic Disorder, Anxiety, Depression\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eSerena\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e34\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e2016\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eSingle\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eHeterosexual\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eWhite British\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes: Post Traumatic Stress Disorder\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eHalle\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e35\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e2017\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eSingle\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eHeterosexual\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eWhite\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes: Depression\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eEmilia\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e47\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e2018/19\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eMarried\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eHeterosexual\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eWhite European\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes: Depression\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eAmy\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e24\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e2020\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eSingle\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eBisexual\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eWhite Latina\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eNatalie\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e36\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e2020\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eMarried\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eHeterosexual\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eWhite\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eTara\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e29\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e2021\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eSingle\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eHeterosexual\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eIndian\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eMaya\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e27\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e2022\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eEngaged\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eHeterosexual\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eWhite British\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eMaria\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e43\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e2022\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eSingle\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eHeterosexual\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eWhite British\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eMadeline\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e27\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e2022\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eSingle\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eBisexual\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eWhite British\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eAmara\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e34\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e2022\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eMarried\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eHeterosexual\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eWhite British\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes: Generalized Anxiety\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eNo\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e\u003cstrong\u003eKatharine\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e32\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003e2023\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eMarried\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eHomosexual\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eWhite British\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes: Generalized Anxiety \u0026amp; Depression\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd align=\"left\"\u003e\n \u003cp\u003eYes\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd align=\"left\" colspan=\"9\"\u003e\n \u003cp\u003e\u003cstrong\u003eN/B.\u003c/strong\u003e All characteristics are self-reported by participants; Table organized by Year of Endometriosis Diagnosis.\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n \u003c/table\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e\n \u003ch2\u003eData Analysis\u003c/h2\u003e\n \u003cp\u003eInterview data were analysed by one researcher [JMM] using a modified grounded theory analysis approach (Silverio et al., \u003cspan class=\"CitationRef\"\u003e2019\u003c/span\u003e). This approach, whilst remaining faithful to Classical approaches to Grounded Theory (Glaser \u0026amp; Strauss, \u003cspan class=\"CitationRef\"\u003e1967\u003c/span\u003e; Glaser, \u003cspan class=\"CitationRef\"\u003e1992\u003c/span\u003e) data are coded following a constant comparison methodology: first line-by-line with verbatim codes, then focused as more descriptive coding, then subsequently developing analytic super-categories, followed by emergent interpretive themes, and finally generating a theory. In terms of the theory, the consideration of the relationship between themes allows for a theory to emerge (Glaser, \u003cspan class=\"CitationRef\"\u003e2001\u003c/span\u003e). A second form of saturation was also considered here: theoretical saturation which aided in the assessment of whether themes derived from the dataset were adequately supported by data (Glaser, \u003cspan class=\"CitationRef\"\u003e2001\u003c/span\u003e) and therefore gave confidence to the final theory.\u003c/p\u003e\n\u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003eThis Grounded Theory Analysis resulted in four themes (with respective super-categories; Fig.\u0026nbsp;\u003cspan class=\"InternalRef\"\u003e1\u003c/span\u003e): 1) Fighting a Battle in Isolation (Dismissal by Healthcare Professionals, Feelings of Isolation, \u0026lsquo;Blob Monster\u0026rsquo; Depression), 2) Shadows of Fear, Glimmers of Hope (Dominating Sense of Fear, Unpredictability of Endometriosis, Glimmers of Hope), 3) Compelled into Being My Own Advocate (Relief of a Diagnosis, Grieving a Life I Assumed I Would Have, and Empowerment), and 4) Caution, Candour, but Not Conflation (The Danger in Conflation, a \u0026ldquo;Woman\u0026rsquo;s Problem\u0026rdquo;, The Mental/Physical Health Interplay). Each theme is presented below, with representative quotations embedded.\u003c/p\u003e\n\u003cp\u003eFighting a Battle in Isolation\u003c/p\u003e\n\u003cp\u003eThis first theme focused on feelings of isolation which arose as a result of navigating endometriosis, its symptoms, and effects. Many women recounted stories of dismissiveness by HCPs both prior to receiving a diagnosis as well as the period following. Receiving the diagnosis in and of itself was often noted as a challenging feat, as professionals would often attribute symptoms to typical menstrual cycle discomfort.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;But you go to the GP, and they just say, \u0026lsquo;Oh you are fat. If you lose some weight, your periods will get lighter\u0026rsquo;. Or they just brush it under the carpet. And there is also a sort of feeling that you shouldn\u0026rsquo;t go to the GP because it is just periods\u0026rdquo;\u003c/em\u003e \u0026ndash; Halle\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eIn the time following the diagnosis, treatment options would often span hormonal therapy to laparoscopic surgery to remove endometrial lesions. For those cases where surgical teams were unwilling to operate further, \u0026lsquo;getting pregnant\u0026rsquo; seemed to be a common, yet unhelpful, recommendation.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;And because it had spread to other organs and organs that they weren\u0026rsquo;t willing to operate on, I was still under the care of the clinic and at that point, their recommendation was \u0026lsquo;Well, get pregnant. And that will take care of it\u0026rsquo;. And they would just keep saying that to me again and again. \u0026lsquo;Well why don\u0026rsquo;t you just try and get pregnant?\u0026rsquo; And we did try and get pregnant, and it was an excruciatingly painful and emotional year\u0026hellip;\u0026hellip;\u0026hellip; And it was just a painful experience from all ends which was why we just stopped because I couldn\u0026rsquo;t deal with the pain any more. It was excruciating and the emotional rollercoaster was unhelpful as well.\u0026rdquo;\u003c/em\u003e \u0026ndash; Helen\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eHowever, many women felt dismissed by HCPs when discussing treatment, and in many cases, this discussion would result in quite drastic or radical treatment such as suggesting a full hysterectomy.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;I saw the consultant who pretty much tried to say that the MRI would probably be over-exaggerating, did an internal ultrasound, said, \u0026lsquo;Well it all looks fine to me. Look at your age, you are not going to have kids, just have a hysterectomy\u0026rsquo;, and I was just like so taken back.\u0026rdquo;\u003c/em\u003e \u0026ndash; Maria\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eOften, feelings of isolation would be undermined by the difficulty women faced in navigating care, and delays surrounding the healthcare system. Such delays intensified feelings of uncertainty around the condition\u0026rsquo;s progression, as well as a sense of neglect by the healthcare system.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;\u0026lsquo;Let\u0026rsquo;s do an MRI to find out if it is expanding or spreading\u0026rsquo;. I was like, \u0026lsquo;Okay, fine\u0026rsquo;. Then I said, \u0026lsquo;Okay, when is the surgery in August?\u0026rsquo; He said, \u0026lsquo;Not August, honey, six to nine months more you have to wait\u0026rsquo;. I was just devastated. Today, I am better, but yesterday, I was completely devastated. I couldn\u0026rsquo;t believe it.\u0026rdquo;\u003c/em\u003e \u0026ndash; Emilia\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;When you have already been through ten years of waiting. Then, once you get a diagnosis, you join another list, it feels barbaric. You feel like, \u0026lsquo;God, I cannot deal with this. One day more feels too much. It has been so long\u0026rsquo;.\u0026rdquo;\u003c/em\u003e \u0026ndash; Amara\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eThe extent of the pain and its impact on quality-of-life was noted to bring about feelings of isolation, loneliness, and depression. For some women, endometriosis also played a negative role in partner relationships, as they felt their partners lacked understanding and support, which also seemed detrimental to sex lives.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;I think because a lot of it was so directed at myself, something that I must be doing wrong for a long time, so I often felt very sad or depressed or low, and I think the anger has only really come out more recently and I think that therapist that I have been working with more recently helped me get in touch with that a little bit more because I think I found it quite hard to express that. I just had got so used to it being my fault that relationships were not working because I could not have sex.\u0026rdquo;\u003c/em\u003e \u0026ndash; Amara\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eIn addition, the lack of understanding and growing desensitisation from partners made the experiences of endometriosis increasingly isolating, especially as symptoms worsened.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;In terms of relationships, I think it really took a toll. I had a long-term relationship through my university years, and he just became completely desensitised, unsympathetic, did not understand. I wouldn\u0026apos;t say it was the reason why things broke down, but it was definitely a factor. It was like \u0026lsquo;Oh god, this again\u0026hellip; Now I\u0026apos;ve got to look after you again\u0026rsquo;. I can remember crawling down our hallway in our apartment trying to get his attention, because I could barely move, and him just pretending he couldn\u0026apos;t hear me. It\u0026rsquo;s that feeling of helplessness.\u0026rdquo;\u003c/em\u003e \u0026ndash; Michelle\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eFor some, the way they felt about their body also affected their desire to meet potential partners.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;And pre-surgery, I just didn\u0026rsquo;t want to even look at a man. I didn\u0026rsquo;t want even to think that anything would possibly be touching that area of my body. I just felt sore, sensitive, and unclean.\u0026rdquo;\u003c/em\u003e \u0026ndash; Halle\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003ePainful sex also played a role in affecting intimacy and partner relationships, creating another pathway to feelings of isolation.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;I\u0026rsquo;ve been in relationships that have been quite unhealthy, in terms of quite manipulative and quite controlling, and so when sex is always very painful, that I couldn\u0026rsquo;t talk about\u0026hellip; That, I couldn\u0026rsquo;t express\u0026hellip; So, I could talk about the endometriosis, and it being painful, but it was just like, \u0026lsquo;Well, that\u0026rsquo;s just a normal thing, we\u0026rsquo;re not really that interested. Just you deal with that, and that\u0026rsquo;s nothing to do with us\u0026rsquo;, sort of thing.\u0026rdquo;\u003c/em\u003e \u0026ndash; Tessa\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eHowever, other women also discussed supportive partners who assisted with pain management and were patient throughout journeys to diagnosis, treatment, and sometimes motherhood.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;I think probably that\u0026rsquo;s why he\u0026rsquo;s my husband, he was like the first person I met who would be very understanding like when I was unwell, and he would know everything. Usually before I would not talk about it, I would just hide in the bathroom. So, I think for that I\u0026rsquo;m always really thankful for him because I mean we always had a conversation about it. Yes. If not, I guess it may be better because I could tell him if I was in pain and stuff like that. So, I think it made it better for me.\u0026rdquo; \u0026ndash;\u003c/em\u003e Natalie\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eWith friends, the extent of pain would often dictate \u0026lsquo;social energy\u0026rsquo;. For those women wanting to get pregnant, the impact of endometriosis on fertility would lead some women to feelings of envy and embarrassment towards those female friends who seemingly became pregnant without challenge; further isolating them from their social networks.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;Putting myself back there\u0026hellip; I wouldn\u0026apos;t talk to my friends, and I wouldn\u0026apos;t talk to my best friend. I could not\u0026hellip; She had two children during this period, and I think not being able to share it, not feeling like anyone would really understand, but also feeling like it was something I wanted to hide, because feeling like your body doesn\u0026apos;t do the right things, that you failed in some way\u0026hellip; So, I\u0026apos;m sure it\u0026apos;s mostly connected to the\u0026hellip; Not the experience of pain and heavy periods but more the effect on fertility. That was something I didn\u0026apos;t feel I could talk about. I didn\u0026apos;t share it with my family, didn\u0026apos;t share it with my parents. I think my dad still doesn\u0026apos;t know. My mum only knew that I had IVF after I got pregnant.\u0026rdquo;\u003c/em\u003e \u0026ndash; Michelle\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eThrough interviews, women narrated a story of roadblock after roadblock when navigating endometriosis and the maze-like healthcare systems within which they were being investigated. Such feelings of low mood seemed to be undermined by an inability to feel heard by professionals, connect or feel supported by those individuals in their circle, or participate in social activities given the extent of symptoms and pain.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;Just always feeling a bit on edge, and I think that, again, came from this constantly questioning myself and worrying about what other people were thinking, worrying about being believed, so yeah, this constant state of anxiety. I think because a lot of it was so directed at myself, something that I must be doing wrong for a long time, so I often felt very sad or depressed or low, and I think the anger has only really come out more recently.\u0026rdquo; \u0026ndash; Amara\u003c/em\u003e\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;Yes, it\u0026rsquo;s horrible. The constant pain. I think the volatility, some days, I am usually a happy and positive person. But sometimes, I just go completely down. I think it is that thing, not having a normal day-to-day living.\u0026rdquo; \u0026ndash; Emilia\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eOne woman summarised these feelings of depression by referring to her own as her \u0026lsquo;blob-monster\u0026rsquo;, because of the way she brought the two (endometriosis and depression) together. \u0026lsquo;On the blob\u0026rsquo; is a vulgar-slang term in the UK for menstruating, with \u0026lsquo;monsters\u0026rsquo; (sometimes \u0026lsquo;demons\u0026rsquo;), being colloquially used for mental health issues. As she mentioned, the endometriosis completely fed into the depression given its all-encompassing effect on her quality-of-life.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I think the endometriosis fed the depression because your life is being taken over by this monster. And so, pre-endometriosis diagnosis \u0026ndash; and I read a lot about depression because I like to read a lot about it and understand what\u0026rsquo;s wrong with me \u0026ndash; I read a lot about depression and different ideas of depression. And I can remember, somebody called it like, the black dog \u0026ndash; their black dog was depression. I thought of it as a sort of weird bloody monster\u0026hellip; like a blob-monster, that was my depression. And I think it was linked to the endometriosis and the heavy periods and it just fed\u0026hellip; the endometriosis pre-diagnosis just fed into that sort of like inability to do anything because you are just so tired from managing the pain. Yeah, I think I was depressed beforehand. But I think when endometriosis started getting bad and the doctor\u0026rsquo;s going \u0026lsquo;You are just fat. There\u0026rsquo;s nothing wrong with you, you\u0026rsquo;re just fat\u0026rsquo;, but I couldn\u0026rsquo;t do anything because I was exhausted from the endometriosis and depression, and it fed\u0026hellip; it just got bigger and bigger and bigger.\u0026rdquo;\u003c/em\u003e \u0026ndash; Halle\u003c/p\u003e\n\u003cp\u003eShadows of Fear, Glimmers of Hope\u003c/p\u003e\n\u003cp\u003eThe second theme explores a dominating sense of fear up against small glimmers of hope. Women voiced this \u0026lsquo;shadow\u0026rsquo; of fear as they talked through feelings of anxiety and panic which seemed to accompany endometriosis. Often, there were stories of difficulty in managing symptoms and a negative impact on quality-of-life.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;I cannot overstate how severe it was - how much I was bleeding, the fact that I was throwing up from the pain and blacking out from the pain on the train into work.\u0026rdquo;\u003c/em\u003e \u0026ndash; Halle\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eConfusion surrounding flare-ups was noted, and the concern about what symptoms meant for their body and their health.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;And then I think because I was in this, kind of, I still had the old coil, so I was still getting these flare-ups, it just meant that every time I had a flare-up, I felt that confusion again and that anxiety around what that meant.\u0026rdquo;\u003c/em\u003e \u0026ndash; Madeline\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eGiven how unpredictable and inconsistent endometriosis is in its presentation and course \u0026ndash; this anxiety seems grounded in the lack of foresight into the severity of symptoms and the condition\u0026rsquo;s impact on fertility.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;So, his thing was, change the coil, see how that does. And thankfully, that does seem to have stabilised it. I have occasional periods around when my time of the month is where I don\u0026apos;t feel so great. But generally, I\u0026apos;m okay. And he was, like, \u0026lsquo;If that doesn\u0026apos;t work, we can schedule an operation\u0026rsquo;. But he was, like, \u0026lsquo;I would recommend that before you want to have kids, schedule in maybe, like, two years prior to having this operation\u0026rsquo;\u0026hellip; And I think because suddenly I was being told, \u0026lsquo;Oh, wait, you\u0026apos;re going to have to schedule a surgery\u0026rsquo;. It\u0026rsquo;s all worked back. And also, you have someone saying, \u0026lsquo;You might want to start thinking about in your late twenties, early thirties\u0026rsquo;, and I\u0026apos;m going, \u0026lsquo;I can\u0026rsquo;t. I\u0026apos;m a PhD student. I can\u0026apos;t do my late twenties. I\u0026apos;m going to finish my PhD at 28. I have no savings. I have no money. I cannot afford to have a child at that time\u0026rsquo;. So, you\u0026apos;ve got the panic of finances, panic of do you do what you actually want to do.\u0026rdquo;\u003c/em\u003e \u0026ndash; Madeline\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eThe unknowns relating to fertility and the additional planning as a result also arose as a consistent theme of anxiety and panic throughout interviews. For some women, the anxiety around whether they would be able to carry their baby to full-term was an ongoing worry.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;Then going into a pregnancy knowing you have endometriosis, obviously when you look up endometriosis and pregnancy, there is lots of stuff about miscarriage, so I think I had really really bad anxiety at the start of my pregnancy, that I was going to miscarry. Every day I was checking the statistics on miscarriage at each point in pregnancy just worrying about that a lot. Obviously, failing to get pregnant as well. Every month that disappointment as well.\u0026rdquo;\u003c/em\u003e \u0026ndash; Amara\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eConcerns about motherhood were sometimes experienced as feelings of inadequacy and anxiety as women grappled with being unable to fulfil what they perceived as an essential part of womanhood.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;I don\u0026rsquo;t know, just feeling somehow inadequate. Feelings of inadequacy that I wouldn\u0026rsquo;t be able to fulfil my female function and anxiousness about how that affects my relationship with my husband, his family, my family, all that kind of thing.\u0026rdquo;\u003c/em\u003e \u0026ndash; Scarlett\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eThere were also discussions around loss of control given the powerful and often ambiguous impact endometriosis has on the body. One woman discussed her choice to be child-free, however, when she discovered her ability to conceive might be compromised due to surgery, it required her to be reflective of what this meant.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;But when I had my first laparoscopy and they told me that doing this kind of surgery can affect your fertility, for that one moment, I felt that was my choice that I didn\u0026rsquo;t want to have babies but, what if it\u0026rsquo;s taken away from me?\u0026rdquo;\u003c/em\u003e \u0026ndash; Gabriella\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eHowever, at times, there were also glimmers of hope, especially when discussing the condition with supportive and uplifting HCPs.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;I met this really lovely gynaecologist who said, \u0026lsquo;It\u0026rsquo;s a weird thing, endometriosis\u0026rsquo;, she said, \u0026lsquo;sometimes I see patients with only a little bit who just can\u0026rsquo;t get pregnant and other times I see people with endometriosis who do have children naturally\u0026rsquo;. She said, \u0026lsquo;It\u0026rsquo;s a very odd thing\u0026rsquo;. And that was quite comforting to me because I had been told, \u0026lsquo;Oh God, you\u0026rsquo;ve got a really bad case\u0026rsquo;. I was like, \u0026lsquo;Oh!\u0026rsquo; And then it was nice for her to say, \u0026lsquo;Well don\u0026rsquo;t read too much into that because I\u0026rsquo;ve seen people with really bad endometriosis just have children naturally\u0026rsquo;. So, it was nice to hear some glimmers of hope there.\u0026rdquo;\u003c/em\u003e \u0026ndash; Scarlett\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eCaution, Candour, but Not Conflation\u003c/p\u003e\n\u003cp\u003eThe third theme delves into the tension between physical and mental health, highlighting the challenge in considering both without conflating them. In the narratives which arose out of interviews, a consistent discourse emerged: the physicality of endometriosis as a condition and its impact on wider physical health significantly impacts psychological wellbeing \u0026ndash; with detrimental effects \u0026ndash; and can often lead to periods of mental ill health.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;And it was after getting diagnosed with endometriosis and getting the surgery has been so much better. So, my mental health was awful in the period beforehand because you are being\u0026hellip; I felt like I was being gaslighted by the GP. And because I was so focused on the pain and everything else, I couldn\u0026rsquo;t function properly. And I don\u0026rsquo;t know whether the depression helped in the fact that people were telling me \u0026lsquo;Everything\u0026rsquo;s fine, or \u0026lsquo;It\u0026rsquo;s just you are fat, you are just whatever\u0026rsquo;, so you are thinking that\u0026rsquo;s what it is. I mean, I was off fluoxetine at this point because I got diagnosed in Sheffield and then moved down to London and stopped taking it and whatnot. So, after the surgery, as I said, that sense of satisfaction\u0026hellip; but it wasn\u0026rsquo;t really satisfaction, it was like a relief to know that you had been heard and believed and that you knew something was wrong\u0026hellip; and it was, something was wrong.\u0026rdquo; \u0026ndash; Halle\u003c/em\u003e\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eIn the case of endometriosis, the condition\u0026rsquo;s physical effects bring about feelings of despondency and isolation due to a lack of support and validation. Further, the burden of navigating endometriosis on a daily basis fuels anxiety and panic. Women consistently grappled with questions of whether they had enough sanitary products to last the day, whether they would make it through the workday without bleeding through their clothes, whether their partner would leave them if they could not have what they perceived to be a normal sex life, and whether they would be able to get pregnant or would experience one or more pregnancy losses.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;Because there\u0026rsquo;s of course the, once you know that you\u0026rsquo;ve got endometriosis, and there\u0026rsquo;s dealing with that. But then there\u0026rsquo;s also, I still had endometriosis when I didn\u0026rsquo;t know that I had it. So, the dealing with what endometriosis causes, which, certainly for me, it was incredibly heavy periods, with a lot of symptoms around my periods. All of this other pain going on, that you\u0026rsquo;re just meant to get on with. So, I did just get on with, but then you\u0026rsquo;re constantly trying to work out how do you just get on with it, and feeling anxious all the time. So, feeling anxious about the practicalities of do I have enough Tampax? I need Tampax and sanitary pads at times in my period, because literally, I\u0026rsquo;d be having to change a super plus Tampax every hour. And a class might last more than an hour. Sleeping, how you manage that. Getting up in the night, setting my alarm early, to be able to get up in the night to change my Tampax, even if I\u0026rsquo;m wearing sanitary pads. It was so heavy.\u0026rdquo;\u003c/em\u003e \u0026ndash; Tessa\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eAbove all, granting space and resources to talk through this emotional toll is often necessary, without too quickly medicalizing this toll as a mental health diagnosis.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;I was feeling very nauseous, I was very bloated. I was getting asked, was I pregnant? I was in a lot of pain. I went to the GP\u0026hellip; a very good GP surgery\u0026hellip;\u0026hellip;\u0026hellip; And I was dismissed thirteen times for just being stressed. So that was very stressful!\u0026rdquo;\u003c/em\u003e \u0026ndash; Serena\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;Because it is life changing. You don\u0026rsquo;t go through other life changing moments without talking it through with somebody first. So, I think there needs to be more awareness around that and the importance of offering that space and that help.\u0026rdquo;\u003c/em\u003e \u0026ndash; Amy\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eWhile it remains important to not conflate the two, recognizing the emotional toll of endometriosis is crucial, as navigating a chronic condition on a daily basis marks a significant change to the expected trajectory of one\u0026rsquo;s lifecourse. From interviews, a nuanced understanding of the relationship between the two then seems significant, and must be approached with both candour and caution; as one woman noted \u0026ndash; there is also a danger in disregarding the mental health aspect of women\u0026rsquo;s healthcare.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;I think we need to be careful not to conflate them too much. Because I do worry sometimes that it\u0026rsquo;s another way of dismissing things. It\u0026rsquo;s sort of going, \u0026lsquo;Okay, if you\u0026rsquo;ve got an issue that\u0026rsquo;s related to physiologically being a woman, then you must have mental health issues. And if you\u0026rsquo;ve got mental health issues, it\u0026rsquo;s because you\u0026rsquo;re a woman, in some way or another.\u0026rsquo; So, I do worry sometimes that they get conflated. I also would like to see more understanding of the impact on mental health, without necessarily being diagnosed with a mental illness.\u0026rdquo;\u003c/em\u003e \u0026ndash; Tessa\u003c/p\u003e\n\u003cp\u003eCompelled into Being My Own Advocate\u003c/p\u003e\n\u003cp\u003eThe fourth theme explores the idea of being compelled into being one\u0026rsquo;s own advocate, encompassing the journey from diagnosis to the ensuing grief which followed, and then finally, eventual feelings of acceptance of their condition and empowerment. For many women, receiving the diagnosis in itself brought a wave of relief, as it was validation something was \u0026ndash; and had always been \u0026ndash; clinically wrong.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;I think getting the diagnosis for me, I actually thanked the consultant with a big beaming smile on my face and she was like, \u0026lsquo;I don\u0026rsquo;t think anybody has ever been so excited\u0026rsquo;, and I was just like, \u0026lsquo;No this is such a relief to know I\u0026rsquo;m not insane and somebody believes me, and somebody has found what the problem is!\u0026rsquo;\u0026rdquo;\u003c/em\u003e \u0026ndash; Maria\u003c/p\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;So, after the surgery, as I said, that sense of satisfaction\u0026hellip; but it wasn\u0026rsquo;t really satisfaction, it was like a relief to know that you had been heard and believed and that you knew something was wrong\u0026hellip; and it was, something was wrong. And the high of that kept me going for quite a while. The high of that helped me all the way through the surgery.\u0026rdquo;\u003c/em\u003e \u0026ndash; Halle\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eHowever, with the relief of the diagnosis also came grief for some women, especially for those who envisioned a life as a mother. A reluctance to discuss this grief resonates with societal norms tied to womanhood. Such norms often revolve around an assumption that motherhood is a crucial milestone defining a woman\u0026apos;s completeness and worth, with deviation from those societal expectations rendering them ostracized.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;I\u0026rsquo;m now in my mid-40s, and I\u0026rsquo;m never going to be a parent. Not the way that I wanted to be. Not to babies, and having a family, and all that sort of stuff. That\u0026rsquo;s not going to happen. And I still haven\u0026rsquo;t fully come to terms with that. And when I\u0026rsquo;ve had counselling and stuff like that, I\u0026rsquo;ve touched on it, but actually I\u0026rsquo;ve realised it\u0026rsquo;s the one thing that I don\u0026rsquo;t really talk about. It\u0026rsquo;s immediately extremely upsetting, and I\u0026rsquo;ve just kind of avoided it. It\u0026rsquo;s come up a little bit, and I\u0026rsquo;ve just gone, \u0026lsquo;I know this is something that I need to deal with\u0026rsquo;, but it\u0026rsquo;s not like, \u0026lsquo;Yes, okay, we\u0026rsquo;ll talk about it for five weeks, or we\u0026rsquo;ll talk about it for twelve weeks\u0026rsquo;. This isn\u0026rsquo;t about CBT, this is grieving, ultimately. And it\u0026rsquo;s grieving the loss of a life that I wanted, and a life that I assumed that I would have.\u0026rdquo;\u003c/em\u003e \u0026ndash; Tessa\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eAn inability to get pregnant was not always the full and final story, however, as some women did not want to have children due to the possibility of children growing up in a negative environment, becoming caretakers, or receiving a future diagnosis of endometriosis.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;And with my mental health, my physical health, I don\u0026rsquo;t want to\u0026hellip; it can get toxic to a point, you know where you constantly\u0026hellip; I think I have changed now but there was this point where I was constantly negative about everything. And I wouldn\u0026rsquo;t want a child to live in that kind of environment.\u0026rdquo;\u003c/em\u003e \u0026ndash; Gabriella\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eWhen reflecting on their experiences, many women voiced a story of empowerment, as they gained confidence expressing needs in relationships and in healthcare spaces.\u003c/p\u003e\n\u003cdiv class=\"BlockQuote\"\u003e\n \u003cp\u003e\u003cem\u003e\u0026ldquo;I\u0026rsquo;ve become more unapologetic. I don\u0026rsquo;t give a shit about anyone\u0026rsquo;s\u0026hellip; sorry\u0026hellip; I don\u0026rsquo;t care about anyone\u0026rsquo;s opinions. It is who\u0026hellip; and I think I know my body more now. I know my body more; I know how it works, now, especially maybe during the COVID time when everything was shut, and I became more friends with my body and realised that it is telling me symptoms. People will tell me, \u0026lsquo;Oh why don\u0026rsquo;t you do yoga? Why don\u0026rsquo;t you walk?\u0026rsquo; They are things I can\u0026rsquo;t do. There are things that I can do, and I can\u0026rsquo;t please people. So, I think, as a partner, as well, I\u0026rsquo;ve been more vocal\u0026hellip; I\u0026rsquo;ve communicated more. And it has given me the freedom to talk about my body without shame.\u0026rdquo;\u003c/em\u003e \u0026ndash; Gabriella\u003c/p\u003e\n\u003c/div\u003e\n\u003cp\u003eThe idea of simultaneously embattled by their experiences and equally empowered by the fact they have survived them, lends itself to the narrative of women achieving a state of confidence and authority without taking anything away from all which they have endured, and continue to endure on daily basis.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u0026ldquo;So, I think I\u0026rsquo;ve just become a little bit of a toughened endo warrior now that will shout it to the hills and just go\u0026hellip; When people go, \u0026lsquo;Oh I\u0026rsquo;ve got really bad periods\u0026rsquo;, I go, \u0026lsquo;Don\u0026rsquo;t get complacent. Keep going, just keep pushing\u0026rsquo;, because no-one should have to do what I did for 26 years. \u0026ndash; Maria\u003c/em\u003e\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eSummary of Main Findings\u003c/p\u003e\n\u003cp\u003eGrounded Theory Analysis allowed for the emergence of a theory: \u0026lsquo;Embattled Empowerment\u0026rsquo; which focuses on the sense of advocacy and empowerment women voiced throughout interviews \u0026ndash; not necessarily out of desire \u0026ndash; but rather due to necessity. The concept of self-advocacy seemed crucial for women as they navigated the challenges of receiving an accurate diagnosis with often inconsistent support from healthcare providers, friends, family, and at times, partners. Participant narratives shed light on the complex interplay between mental and physical health in the context of endometriosis, a relationship illustrated in the below diagram. For many women the dismissal of symptoms as \u0026lsquo;stress\u0026rsquo;, \u0026lsquo;anxiety\u0026rsquo;, or \u0026lsquo;normal menstrual cycle discomfort\u0026rsquo; led to a psycho-emotional response, which often delayed the subsequent diagnosis. This response was often characterized by sentiments of isolation and lowness due to a lack of support; anxiety and panic around symptom management, the condition\u0026rsquo;s impact on fertility; and eventually, feelings of empowerment given the persistent struggle women endured and continue to navigate.\u003c/p\u003e\n\u003cp\u003eComparisons with Previous Research\u003c/p\u003e\n\u003cp\u003eThe theory \u0026lsquo;Embattled Empowerment\u0026rsquo; speaks to this danger of conflation. Labelling emotion as a mental health disorder perpetuates the stereotype of depression, anxiety, and panic being a \u0026lsquo;woman\u0026rsquo;s problem\u0026rsquo;. Noting the increased medicalization of women\u0026rsquo;s everyday stress or upset others have written about (Ussher, 2010) we provide new evidence for how women\u0026rsquo;s distress continues to be communicated as a pathology to be expected within the female experience. Such categorization not only reinforces the notion women are predisposed to such diagnoses (Silverio, 2021), but also elevates the likelihood that a physical health condition \u0026ndash; like endometriosis \u0026ndash; might be overlooked (Hudson, 2022), especially when HCPs have limited knowledge of the condition. However, it is also important to recognize the absence of support can have a detrimental impact on those women navigating a chronic health condition and/or symptoms (Kundu et al., 2015), potentially leading into periods of mental ill health (Chen et al., 2016). Similarly, discourses of endometriosis have been reported as \u0026lsquo;brokenness\u0026rsquo;, \u0026lsquo;abnormality\u0026rsquo;, and \u0026lsquo;disbelief\u0026rsquo; within the healthcare space (Bullo, 2018). This repeated dismissal by HCPs whilst attempting to receive a diagnosis, very much aligning with the findings of this study, with a \u0026lsquo;lack of agency\u0026rsquo; being voiced throughout interviews in the present study as well, but participant outlooks often became more positive after receiving the official diagnosis. It was after this rupture point that many women began discussing feelings of pride, newfound confidence, and empowerment, which only emphasized the importance of feeling heard and validated in the clinical setting. Often, this confidence translated into increased transparency and self-advocacy within relationships, social circles, and the healthcare space as found previously (Fernley, 2021). Terms such as \u0026lsquo;warrior\u0026rsquo; or \u0026lsquo;tenacious\u0026rsquo; emerged, highlighting the significance in women asking for support, setting boundaries, and fighting for treatment and medical support, which in turn, also aided in emotional and psychological wellbeing. This sense of empowerment and self-advocacy amongst women, however, was not an intentional pursuit, but rather realized given the set of circumstances they faced. Dismissal of women\u0026rsquo;s pain in the healthcare space has been increasingly documented over the last decade. A notable example is the \u0026lsquo;Gender Pain Gap Index Report\u0026rsquo;, which disclosed that a significant majority of UK female \u0026lsquo;pain sufferers\u0026rsquo; felt that their pain was consistently overlooked or invalidated; and attributed the existence of the \u0026lsquo;pain gap\u0026rsquo; to experiences of being viewed as \u0026lsquo;emotional\u0026rsquo; when discussing such pain (Nurofen, 2022). The paradox in this, of course, is as noted earlier: Labelling women with symptoms which cause them psychological distress as \u0026lsquo;emotional\u0026rsquo; not only fails to address the underlying issue, but also exacerbates their isolation and increases the risk of mental ill health. Within the cohort of 18 participants \u0026ndash; nine individuals had received clinical diagnoses of depression, anxiety, or related disorders. Whilst it would be overly simplistic to attribute these mental health diagnoses solely to endometriosis, the association seems clear \u0026ndash; for many women, endometriosis manifests as an isolating, exhausting, and anxiety-inducing condition.\u003c/p\u003e\n\u003cp\u003eIn light of this, literature on \u0026lsquo;Candidacy Theory\u0026rsquo; could prove helpful in understanding the interactions women have with healthcare services in pursuit of a diagnosis of endometriosis. Candidacy Theory outlines a framework of seven aspects which provide insight into how an individual, healthcare professionals, or both jointly might engender an environment of care seeking and navigation through particular health services (Dixon-Woods et al., 2006; Tookey et al., 2018). In the context of the current study, all participants identified as candidates for care, and consistently asserted this candidacy through appearing at appointments despite health service impermeability. However, determinations made by HCPs were often a deciding factor in whether participants received an endometriosis diagnosis, reflecting a somewhat over-exercised adjudicatory function. Such adjudications often dictated whether individuals would persist in their belief about symptoms and their determination to self-advocate. The diagnosis itself was a turning point for women, as it validated such symptoms, and allowed for continued progression through the system, including treatment and additional care.\u003c/p\u003e\n\u003cp\u003eThe UK has made significant progress in addressing women\u0026rsquo;s health concerns, with notable initiatives like the \u0026lsquo;Better for Women\u0026rsquo; report (Royal College of Obstetricians \u0026amp; Gynaecologists [RCOG], 2019) and the 10-year \u0026lsquo;Women\u0026rsquo;s Health Strategy\u0026rsquo; (Department of Health and Social Care, 2022). These strategic plans focus on integrated care, for instance, through the expansion of women\u0026rsquo;s health hubs or centres. Additionally, the RCOG, in partnership with Endometriosis UK, developed a \u0026lsquo;Menstrual Wellbeing Toolkit\u0026rsquo; which offers evidence-based guidance for general practitioners in diagnosing, supporting, and managing those issues under the umbrella of menstrual health, including endometriosis (RCOG, 2019). The potential impact of this could include better awareness amongst HCPs, reduced diagnostic delay, and appropriate support for both physical and mental health conditions. It is imperative that specialist gynaecology services are available to all women and not pared back in the way they have been in recent years (Choo et al., 2014), and that women are asked about their psychological health and emotional wellbeing in every appointment \u0026ndash; from primary care visits to surgical interventions. This approach should be implemented regardless of whether a patient has a clinical mental health diagnosis, as any appointment is an opportunity for health professionals to check-in and provide information around forms of support \u0026ndash; such as support groups, involvement of loved ones in care, alternative therapies (yoga, meditation), educational resources, and fertility counselling (Apers et al., 2018).\u003c/p\u003e\n\u003cp\u003eStrengths, Limitations, and Future Directions\u003c/p\u003e\n\u003cp\u003eThe semi-structured format of interviews facilitated a participant-centred approach allowing for open-ended discussions. This approach empowered participants to share their lived experiences with endometriosis, authentically. The current study\u0026rsquo;s scope focused on UK-based females, and given this, the majority of participants received much of their care in the UK. This being said, a few participants also accessed care for endometriosis symptoms elsewhere \u0026ndash; including Brazil, India, the USA, and The Netherlands. Given the UK focus, many of the conversations centred around the National Health Service [NHS], and therefore may not be generalizable to other countries. As the NHS is a publicly-funded system, waiting times for services deemed \u0026lsquo;elective\u0026rsquo; are exorbitant. For many participants within this study, this was very much the case for both gynaecological and mental health care. As such, a handful of participants discussed accessing care \u0026ndash; especially fertility treatment and mental health services \u0026ndash; privately. Despite recruitment efforts, this study lacked ethnic diversity, which requires further exploration, as the findings may overlook unique experiences and perspectives of individuals from different ethnic backgrounds. The benefit of having used Grounded Theory is such that by changing one or more of the parameters such as population (UK-based women), phenomenon (endometriosis), or context (the NHS); the theory generated in this study can be \u0026lsquo;tested\u0026rsquo; by changing one of those three parameters (Corbin \u0026amp; Strauss, 1990).\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eIt is clear from the findings of this study that endometriosis is a life-altering condition due to the physical effects it has on the body as well as the impact on quality-of-life, mental health, and psycho-social wellbeing. Participant interviews revealed the extent of the emotional impact at every stage \u0026ndash; from the onset of symptoms to the receipt of a diagnosis, to the condition\u0026rsquo;s impact on family, friendships, relationships with intimate partners, and finally, on fertility and identity derived from reproductive health and potential. Endometriosis can be all-reaching and all-consuming, and leave women feeling isolated, anxious, and in pain. It is because of how ubiquitous it is that it affects mental health. For many women, symptoms are painful and unpredictable, but they are also \u0026lsquo;hidden\u0026rsquo; which makes it difficult for doctors to diagnose and loved ones to understand. It would be overly simplistic to attribute any of the mental health diagnoses women reported solely to the endometriosis, and in turn could misappropriate their mental health to a physical condition. However, it cannot be overstated how complex this condition is and the emotional toll and burden it carries. The theory \u0026lsquo;Embattled Empowerment\u0026rsquo; tells the story of women fighting \u0026ndash; for a diagnosis, for appropriate and timely treatment, for a voice in their relationships, and ultimately, for help. Although there is clearly an association between physical health and emotional or psychological wellbeing, healthcare systems must be careful not to conflate them. By medicalizing a valid emotional response, it dismisses the physiological legitimacy of endometriosis and the impact it has on the body, and may too easily attribute a mental health diagnosis. This is not to say a woman with endometriosis cannot be clinically depressed or anxious \u0026ndash; but rather underscores the significance of a holistic perspective when understanding the interaction between physical and mental health. The situation therefore is held in tension, with practitioners needing to acknowledge the interplay between physical and mental health; understand that it is not always one which precedes the other; and legitimise the mental distress which may be present, but not dismiss the physical condition as a mental complaint. Regardless of whether an individual has a clinical mental health diagnosis, it seems crucial that adjudicatory authority is exercised cautiously and psycho-social resources \u0026ndash; support groups, alternative therapies, and/or formalised therapy for more intensive cases \u0026ndash; are shared at every appointment.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003eAll participants consented to participate and to their data being used in publications and other academic outputs.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eAmerican Society For Reproductive Medicine (1997) Revised American Society for Reproductive Medicine classification of endometriosis: 1996. 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Hum Reprod 31(3):554\u0026ndash;562. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://doi.org/10.1093/humrep/dev337\u003c/span\u003e\u003cspan address=\"10.1093/humrep/dev337\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":true,"hideJournal":true,"highlight":"","institution":"King's College London","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"Women’s health, Endometriosis, Diagnosis, Mental health, Psycho-social wellbeing, Qualitative research, Interviews, Grounded Theory Analysis","lastPublishedDoi":"10.21203/rs.3.rs-8174455/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-8174455/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003eEndometriosis is a life-altering condition and whilst much of the research has focused on the severity and management of symptoms, treatment options, and the broad impact on perceived quality-of-life, there remains a gap in understanding the condition and obtaining a diagnosis from a mental health perspective. The present study aimed to explore the impact of endometriosis on women\u0026rsquo;s mental health and psycho-social wellbeing. Semi-structured interviews were conducted with 18 women and analysed through a Grounded Theory approach. The analysis generated the theory \u0026lsquo;Embattled Empowerment\u0026rsquo; which focused on a necessary sense of self-advocacy women discussed throughout interviews and emerged from four inter-related themes: \u0026lsquo;Fighting a Battle in Isolation\u0026rsquo;, \u0026lsquo;Shadows of Fear, Glimmers of Hope\u0026rsquo;, \u0026lsquo;Compelled into Being My Own Advocate\u0026rsquo;, and \u0026lsquo;Caution, Candour, but Not Conflation\u0026rsquo;. The theory \u0026lsquo;Embattled Empowerment\u0026rsquo; portrays a sense of self-advocacy which seemed necessary as women navigated challenges posed by endometriosis, often stemming from the physical impact of the condition as well as the emotional toll it caused. These discussions underscored the need for a more holistic approach to women\u0026rsquo;s healthcare, as it seems crucial women are provided with psycho-social resources and the opportunity to address emotional wellbeing during every healthcare touchpoint.\u003c/p\u003e","manuscriptTitle":"Embattled Empowerment: A qualitative investigation of mental health and psycho-social wellbeing after a diagnosis of endometriosis","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-12-03 09:14:46","doi":"10.21203/rs.3.rs-8174455/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"da359e5a-471c-483f-bfe1-44a1956cafdb","owner":[],"postedDate":"December 3rd, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[{"id":59009919,"name":"Sexual \u0026 Reproductive Medicine"},{"id":59009920,"name":"Women's studies"}],"tags":[],"updatedAt":"2025-12-03T09:14:46+00:00","versionOfRecord":[],"versionCreatedAt":"2025-12-03 09:14:46","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-8174455","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-8174455","identity":"rs-8174455","version":["v1"]},"buildId":"B-jG_2CBjPDmsCi4Wdhf-","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}