{"paper_id":"9ca5ef26-6055-4777-87e5-fc5fc80791ab","body_text":"Full-length Report\nJournal of Health Psychology\n2025, V ol. 30(7) 1610–1623\n/C211The Author(s) 2024\nArticle reuse guidelines:\nsagepub.com/journals-permissions\nDOI: 10.1177/13591053241266249\njournals.sagepub.com/home/hpq\nT ransgender and non-binary\npeople’s experience of endometriosis\nCheryl Eder and Rizwana Roomaney\nAbstract\nThere is a lack of research on gender diverse people’s experiences with endometriosis. W e explored the\nexperience of 11 transgender and non-binary people with endometriosis using phenomenology. W e collected\ndata through multiple interviews and diaries and constructed two themes using hermeneutic analysis: (1)\nUnhomelikeness of Living with Endometriosis and being Gender Diverse, and (2) T owards a Homelikeness of\nLiving with Endometriosis as a Gender Diverse Individual, which we discussed in relation to Svenaeus\nPhenomenology of Medicine. Unhomelikeness is an experience of disconnection with our bodies and being-\nin-the-world as a result of living with a chronic disease. We show how gender diverse people with endome-\ntriosis may have additional layers of unhomelikeness due to further diagnostic delays, endometriosis symp-\ntoms that may trigger gender dysphoria and experiences with treatment that are not inclusive of their gender\nidentity. W e advocate for additional support and awareness for gender diverse people with endometriosis.\nKeywords\nendometriosis, experience, gender diverse, non-binary, phenomenology, transgender\nBackground\nEndometriosis is a gynaecological condition in\nwhich uterine tissue grows outside of the uterus\n(National Institute for Health and Care\nExcellence [NICE], 2017). Symptoms of endo-\nmetriosis include chronic pelvic pain, dysme-\nnorrhoea (painful menstruation), painful sexual\nintercourse, cyclical gastrointestinal symptoms,\ncyclical urinary symptoms and infertility\n(NICE, 2017). Endometriosis has been\ndescribed as causing a devastating effect on\npeople’s quality of life, impacting on the physi-\ncal, psychological, social and sexual areas of a\nperson’s life (Kuznetsov et al., 2017). Although\nendometriosis is a common diagnosis, there are\noften delays in diagnosis with this condition of\nbetween 7 and 9 years for cisgender (a person\nwho identifies their gender with the sex they\nwere assigned at birth (Merriam-Webster,\n2024)) women (Ghai et al., 2020; Swift et al.,\n2024). It is estimated that endometriosis is diag-\nnosed in 10% of cisgender women (World\nHealth Organization [WHO], 2023) and 25% of\ntransgender men (Okita et al., 2021). A number\nof studies have explored the experience of\nStellenbosch University, South Africa\nCorresponding author:\nCheryl Eder , Department of Psychology, Faculty of Arts\nand Social Sciences, Stellenbosch University, Private Bag\nX1, Matieland, Stellenbosch 7602, South Africa.\nEmail: 25786326@sun.ac.za\n\n\nliving with endometriosis (Chapron et al.,\n2015; Cole et al., 2021; Denny and Mann,\n2007; Fagervold et al., 2009; Fourquet et al.,\n2010; Ha˚llstam et al., 2018; Rea et al., 2020;\nRoomaney and Kagee, 2018), however these\nstudies described cisgender women’s experi-\nences of living with this disease. Chadha\n(2020) has highlighted how marginalised\ngroups such as people of colour and gender\ndiverse people’s voices have been missing from\nendometriosis research. This study is important\nas it contributes to sharing gender diverse peo-\nple’s missing narratives in the experience of liv-\ning with this disease in endometriosis research.\nWe explore these voices through our collection\nof data in which we had three interview\nencounters and a diary from each participant.\nThis method provided a rich description of\nlived experience of participants’ experience of\nidentifying as gender diverse and living with\nendometriosis.\nIn this study we used a phenomenological\nlens with Svenaeus (2014) Phenomenology of\nMedicine as our theoretical point of departure.\nSvenaeus (2014) described that our bodies are\nour way of perceiving and experiencing the\nworld. Pain and illness can deeply affect our\nconnection with our bodies and the world, as\nour health affects our mood which then impacts\non our experience of the world (Svenaeus,\n2014). This disconnection can result in unho-\nmelikeness with the body and of being-in-the-\nworld. Svenaeus (2000, 2014) described states\nof homelikeness and unhomelikeness in relation\nto the experience of illness. Homelikeness is\nwhen we are operating as if everything is nor-\nmal, things are as usual in terms of our every-\nday lives (Svenaeus, 2014). Illness disrupts the\nmeaning and meaning processes of lived experi-\nence in a person’s day to day life (Svenaeus,\n2014). Unhomelikeness can lead to feelings of\nhelplessness, despair, disorientation and not\nfeeling at home in our being-in-the-world\n(Svenaeus, 2014). Svenaeus (2014) described\nhow illness changes the structure of the self,\nand through this a person can adjust to a\nhomelikeness. A sense of homelikeness is\ndependent on the severity of the illness, and the\nreinterpretation of the sense of self with the ill-\nness which may be possible through the change\nof outer circumstances, support and understand-\ning of the self in this unhomelike state\n(Svenaeus, 2014). Healthcare professionals can\nbenefit from viewing their patients from a phe-\nnomenological lens so that they can see the\nunhomelike illness and have a better under-\nstanding of their patients (Svenaeus, 2014). In\nthis way, a phenomenological approach to\nunderstanding illness can be helpful. In this\nstudy, we consider a further layer that the gen-\nder diverse person with endometriosis may\nexperience with unhomelikeness. We can also\ninterpret that gender diverse people’s experience\nof gender dysphoria could result in an unhome-\nlike state, as it is described as a sense of unease\nthat a gender diverse individual can experience\nwith the disparity between their gender identity\nand their biological sex at birth (National\nHealth Service, 2020). Gender euphoria, a feel-\ning of accordance and joy in one’s gender\n(Beischel et al., 2022), may then be interpreted\nas a more homelike state. We used this theory\nto describe transgender and non-binary people\nwith endometriosis experience of a sense of\nunhomelikeness with their bodies, being-in-the-\nworld and with their gender identity.\nAim\nOur aim of this article is to report on transgen-\nder and non-binary people’s experience of liv-\ning with endometriosis.\nMethods\nEthical aspects\nThis study was approved through an ethics\nreview committee through the Health Research\nand Ethics Committee at Stellenbosch Univer-\nsity (reference number: S21/07/118 (PhD) and\nproject ID 22452). All participants completed\nconsent forms. We made use of pseudonyms in\nEder and Roomaney 1611\n\nthe write up of our findings to protect partici-\npants’ confidentiality. Authors gifted partici-\npants with $10 Amazon gift card to express\ntheir appreciation for their time that they volun-\nteered for the study. We made provision for a\ncounselling session due to the sensitive nature\nof this study.\nParticipants\nPurposeful and snowball sampling was used to\nrecruit participants for this study. Participants\nwere recruited by advertising the study interna-\ntionally through online social media endome-\ntriosis and gender diverse support groups. We\nadvertised the study from August 2021 to April\n2022. Our advertisement specified that partici-\npants needed to identify as transgender and/or\nas non-binary, have endometriosis or suspected\nendometriosis, be able to speak English, and be\n18 years old or older. The advert provided the\nfirst authors details to contact if they were inter-\nested in or had questions regarding the study.\nTwenty-six people contacted the first author to\nrequest more information and they expressed\ninterest in the study. The first author shared fur-\nther information, answered interested individu-\nals’ questions and provided consent forms.\nEleven people volunteered for the study and\nsigned consent forms.\nData collection\nWe collected data through three semi-structured\ninterviews with each participants and a diary\nthat participants reflected on their experience of\nliving with endometriosis for 3 months.\nInterviews were between 45 and 60 minutes\neach and were conducted on Skype or Zoom,\nand we gave participants the option if they\nwanted to have the camera on or off. We col-\nlected data between January and December\n2022. We conducted three interviews per parti-\ncipant and participants completed a 3 month\ndiary as this study is part of a broader study in\nwhich we are exploring the lived experience of\ntransgender and non-binary people living with\nendometriosis. The broader study has four\nobjectives in which we aimed to explore trans-\ngender and non-binary people’s experience of\nliving with endometriosis: (1) Perceptions of\nhealthcare in relation to endometriosis, (2) the\nlived experience of endometriosis, (3) percep-\ntions of psychosocial support in regards to liv-\ning with endometriosis and (4) the experience\nof integration and support from the endometrio-\nsis community. The three interviews were\nfocused on the four objectives and the diary\nprovided data on the day to day experience of\nliving with endometriosis. This article focusses\non the lived experience of transgender and non-\nbinary people with endometriosis.\nData analysis\nWe used Hermeneutic Analysis and followed a\nseries of steps recommended by Patterson and\nWilliams (2002) to analyse the participant inter-\nviews and diaries. In this analysis process we\nmade use of the Hermeneutic Circle in which\nwe read and reread transcripts, reflected and\nmade use of a reflexive journal, took notes and\napplied ourselves to understand in relation to\nthe theory of Svenaeus (2014). In the first step\nwe reflected on our experience of the inter-\nviews we recorded and our reading of the dia-\nries. In the second step, we numbered lines of\nthe transcribed interviews and diaries so that\nwe could reference the data. We uploaded these\nreferenced documents onto Atlas ti. In the third\nstep we recorded reflections in a journal after\nreading and re-reading the data. In the fourth\nstep we created meaning units by highlighting\nand labelling pieces of text in Atlas ti. We then\nreflected on these meaning units and created\nthemes in step 5. In the sixth step we reflected\non the interrelatedness of themes to each other,\nwhich we found shifted from having a number\nof themes on transgender and non-binary peo-\nple’s experience of living with endometriosis.\nIn the final step, we wrote up the findings and\nour interpretation while we continued to reflect\n1612 Journal of Health Psychology 30(7)\n\nby re-referring to the data, theory and with one\nanother. We reflected on the importance of the\naim of the study, participant’s voices and their\nlived experience of living with endometriosis\nas gender diverse individuals.\nFindings\nFrom the data analysis process described above,\nwe discuss the findings under two themes while\nwe refer to Svenaeus theory of Phenomenology\nof Medicine. The themes are: (1) Unhomelike-\nness of Living with Endometriosis and being\nGender Diverse, and (2) Towards a Homelike-\nness of Living with Endometriosis as a Gender\nDiverse Individual. Under the two themes we\ndiscuss the findings in relation to an unhome-\nlike and homelike state that transgender and\nnon-binary people navigate while living with\nendometriosis in relation to their bodies, being-\nin-the-world and their gender identity. Under\nthe first theme we discussed the findings with\nthe use of three subthemes: (1) Unhomelikeness\nthrough Symptoms: The Effects on the Body\nand Gender Dysphoria, (2) Unhomelikeness\nwith Diagnostic Delays and (3) Unhomelike-\nness with Healthcare and Feelings of Hopeless-\nness. Under the second theme we discussed the\nfindings under a further three subthemes: (1)\nHomelikeness with Diagnosis, (2) Homelike-\nness Through Gender Affirming Healthcare and\n(3) Homelikeness through Coping Strategies\nand a Process of Acceptance.\nDescription of participants\nWe had 11 participants volunteer to take part in\nthe study. These 11 participants came from\nUSA, New Zealand, Australia, Norway, Canada\nand Ireland. Two participants shared that they\nidentified as transmasculine, two individuals\nshared that they identified as transmasculine and\nnon-binary, and seven participants shared that\nthey identified as non-binary. The majority of\nparticipants shared that they had a diagnosis of\nendometriosis after a laparoscopic procedure.\nThe mean age of participants was 26 years, with\nthe youngest participant at 21 years and the eld-\nest was 31 years old. One participant identified\nas Norwegian, one participant identified as\nBritish, six participants identified as white, one\nperson identified as mixed race, Asian, one per-\nson identified as Caucasian and Jewish and one\nparticipant identified as Ashkenazi Jewish.\nUnhomelikeness of living with\nendometriosis and being gender diverse\nUnder this theme we share participants’ experi-\nences of a sense of unhomelikeness with living\nwith endometriosis with the use of subthemes:\n(1) Unhomelikeness through Symptoms: The\nEffects on the Body and Gender Dysphoria, (2)\nUnhomelikeness with Diagnostic Delays and\n(3) Unhomelikeness with Healthcare and\nFeelings of Hopelessness. With these subthemes\nwe explored participants’ experiences of how\nendometriosis symptoms result in feeling unho-\nmelike with the body and their gender identity,\nthe causes and how delays in diagnosis extend\nthe sense of unhomelikeness, and how health-\ncare that was not gender affirming resulted in\nan unhomelikeness state.\nUnhomelikeness through symptoms: The\neffects on the body and gender dysphoria\nParticipants reported symptoms such as intense\npain primarily in the pelvic area of the body,\npain with menstruation, pain with ovulation,\nabnormal menstruation, clots, cysts, problems\nwith the bladder, contractions of the uterus,\nnausea, gastrointestinal and bowel symptoms,\npain with sex, neuropathy, neurological symp-\ntoms, headaches, fatigue and weakness, sciatica\nand psychological symptoms of depression and\nanxiety. Jru, a 29 year old, transmasculine indi-\nvidual from the USA, described how endome-\ntriosis affected him from the age of 11 years\nold, ‘ So it’ s really been a huge dark shadow\nlike haunting over my head this entire time with\ntrauma and stuff ’. He also described\nEder and Roomaney 1613\n\nendometriosis pain, ‘ as if your body is a wet\ntowel and somebody is turning it and wringing\nit out over and over again ’. He further\ndescribed the pain, ‘ like someone stabbing you\nwith a knife and you don’ t see it coming and it\njust happens intermittently but it’ s really sharp,\nreally fast ’, and ‘ like fibres being pulled apart\nfrom beneath my bellybutton ’. Other partici-\npants used similar descriptions for their pain\nwith endometriosis and they expressed that they\nwere plagued with this symptom and other\nsymptoms debilitating their lives. Crow, a\n31 year old non-binary individual from Canada\nreflected in their diary about feeling tired,\n‘ Tired. I feel sick, but I’m not . . . like . . . sick,\nsick. My body makes me feel like garbage every\nday’. Crow later wrote in their diary about\nsymptoms they struggled with during the day,\n‘ I wound up with cramps and vaginal nerve\nshocks . . ., severe vulva soreness, . . . inflamma-\ntion, swelling to the point I look pregnant . . .\nWhy the fuck couldn’ t I be born with a function-\ning body? ’ From Crow’s reflections on their\nsymptoms we can see how they struggled with\nsymptoms and questioned why they had to live\nwith endometriosis. Remy, a 27 year old non-\nbinary individual from Canada related feeling\nfearful and helpless living with endometriosis,\n‘ So there is a lot of just I guess fear but also\njust grief because like, my life seems like this is\nit’. From Remy’s description of feelings of fear\nand grief from living with endometriosis, we\nmay interpret that Remy seems to attempt to\ncome to terms with living with endometriosis,\nhow endometriosis affected them and resulted\nin loss, and how they did not know how endo-\nmetriosis would affect their body, making the\nbody alien and unhomelike. The debilitating\nnature of these symptoms may result in a sense\nof unhomelikeness with the body. Jru compared\nendometriosis to a ‘huge dark shadow’, Crow\nshared how endometriosis made them feel\nterrible each day and Remy shared how living\nwith endometriosis gives them feelings of\nfear and grief. Svenaeus (2000) described\nunhomelikeness as a sense of danger, strange\nand alien to one’s sense of self. Through the\ndescription of participants’ endometriosis\nsymptomology we can observe an unhomelike-\nness with the body as debilitating endometriosis\nsymptoms are at the forefront of their existence.\nFor gender diverse people, the symptoms of\nendometriosis can have additional sequelae.\nEndometriosis and endometriosis-associated\nmenstrual symptoms may trigger gender dys-\nphoria. Endometriosis symptoms can be heigh-\ntened during menstruation (NICE, 2017). Both\nmenstruation and endometriosis are gendered,\nand have connotations and language of being\nassociated with cisgender women (Chrisler\net al., 2016; Jones, 2020). Endometriosis is\ngendered in society and throughout available\nliterature (Jones, 2020). An example of the gen-\ndered language used in the literature on endo-\nmetriosis can be viewed from the WHO (2023)\nas they describe endometriosis as a condition\naffecting women. The gendering of endometrio-\nsis may leave gender diverse people with a\nsense of unhomelikeness as they are excluded\nfrom endometriosis discourse and have to navi-\ngate the incongruence in gendered language to\ntheir bodies. Menstruation has been shown to\nincrease gender dysphoria for people who do\nnot identify as cisgender women (Schwartz\net al., 2023). Endometriosis may trigger gender\ndysphoria as the endometriosis symptoms are\noften heightened during menstruation. There-\nfore during menstruation, gender diverse people\nmay have to manage heightened endometriosis\nsymptoms while they manage an alarming\nreminder of the incongruence of their gender\nidentity and their gender assigned at birth. In\naddition, endometriosis symptoms have been\nshown to negatively affect body image (Calvi\net al., 2023) which may then affect people’s\nrelationships with their bodies. Sawyer, a\n31 year old non-binary individual from\nAustralia shared in their diary that their men-\nstrual cycle made them feel dysphoric,\n‘ Bleeding very uncomfortable and causing\n1614 Journal of Health Psychology 30(7)\n\ndysphoria’. They later shared how endometrio-\nsis symptoms affected them,\nFeeling major gender dysphoria for the changes\nin my body due to endo belly, weight gain from\nmedications, constipation and injuries affecting\nmy mobility. Not feeling good about how I look.\nFeeling emotionally raw.\nWe can see from Sawyer’s experience how\nendometriosis symptoms may have triggered\ngender dysphoria, which left them feeling vul-\nnerable. Sawyer described changes in their\nbody due to the symptoms of endometriosis.\nSome of these endometriosis symptoms are also\ncommon experiences with menstruation. This\nmay then result in gender dysphoria as Sawyer\nneeded to manage symptoms of a disease asso-\nciated with their sex assigned at birth, which\nmay have created a sense of incongruence with\ntheir gender identity and their biological sex.\nSawyer’s experience of endo belly, increase\nweight gain, constipation and injuries affecting\ntheir mobility may also make them feel unho-\nmelike and alien in their body, and within their\ngender identity. We can also view the cumula-\ntive impact of trying to manage endometriosis\nsymptoms, the impact of the disease, the treat-\nments and one’s gender identity has on them.\nOther participants shared how endometriosis\nsymptoms of bloating, endo belly, cramps,\nmenstrual bleeding and pain can trigger gender\ndysphoria. Onyx, a 21 year old non-binary\nindividual from New Zealand, shared in their\ndiary about their endometriosis symptoms that\ntriggered gender dysphoria,\nPretty severe abdo (abdomen) and lower back\ncramps yesterday and today. Haven’t started my\nperiod yet though. Haven’t been feeling too good\noverall. Gender dysphoria is getting worse with\nthe cramps.\nParticipants related how endo belly affected\nthe clothing they could wear and how this\nimpacted on gender dysphoria. Crow shared in\ntheir diary,\nI’ve had to get rid of nearly all of my clothing to\naccommodate the ever worsening swelling. It’s\nexhausting. On top of that, having to adapt my\nentire wardrobe to accommodate my abdominal\nand pelvic pain without triggering dysphoria has\nbeen some trial and error, for sure.\nCrow seemed to attempt multiple methods to\nmanage an unhomelike state of gender dys-\nphoria that was triggered by endometriosis.\nSawyer shared how endometriosis symptoms\naffected gender affirming gear,\nMy binder arrived and I tried it on and it felt\ngood! It also didn’t affect my endo belly at all,\nwhich I was concerned about possibly happening.\nSo gender affirmation with no negative impact on\nmy pain! Huge win! I felt really good trying it on\nfor the first time and seeing how I looked in the\nmirror. It was nice because it’s been really uncom-\nfortable to wear my packer due to pelvic pain.\nSawyer’s quote may reveal how the use of\ngear to assist gender diverse people in their\ngender identity may be affected by endometrio-\nsis symptoms as they were no longer able to\nwear their packer due to pelvic pain. From both\nCrow and Sawyer’s experience it is important\nto consider the value that gender diverse people\nexperience from being able to wear clothes that\nare gender affirming and the positive impact\nthat gender affirming gear can have as it can\naid in managing gender dysphoria and mental\nhealth distress (Diana et al., 2024). From these\nexperiences we can see how endometriosis\nsymptomology places constraints on gender\naffirming clothes and gear which may result in\na sense of unhomelikeness within their body\nand being-in-the-world while they manage\npainful symptomology.\nJru found naming his heightened symptoms,\n‘Storms’, helpful. He said,\nPMS distress I’m outing myself that I, you know,\nhave a specific body type. So if I say ‘Storm’ it’s\nless gender specific and that’s why I say storm,\njust to clarify. Plus if you have that visual of a\nhurricane or tsunami, some kind of like storm,\nEder and Roomaney 1615\n\nlike have you seen Wizard of Oz or whatever it’s\ncalled, the movie, but there is a tornado. Y eh, so\nthat is what I am envisioning when I say I am in\na Storm, it’s like it’s really hard to stay grounded\nand be like feel calm and safe within my body.\nFrom Jru’s quote we can see how gendered\nlanguage affected Jru. By Jru naming pre-\nmenstrual endometriosis symptoms, Storms, he\nfound it assisted him in describing his experi-\nence of pain and he made the symptom more\nacceptable to himself. Jru described how the\nlanguage of menstrual cycles and PMS have\nconnotations around gender identity and are pri-\nmarily associated with cisgender women and so\nby using this language, Jru would need to dis-\nclose his gender identity. We can also observe\nhow endometriosis symptoms and the language\nand societal beliefs of menstrual cycles being\ngendered affect Jru’s sense of safety within his\nbody, which may create an unhomelike state\nbetween Jru, his body, his gender identity and\nbeing-in-the-world.\nWe can perceive how endometriosis symp-\ntoms have a negative effect on participants and\ncan result in a sense of unhomelikeness with the\nbody. There can be a further layer of unhomeli-\nkeness for gender diverse people with endome-\ntriosis as endometriosis symptoms can trigger\ngender dysphoria. Participants described how\nthey needed to mitigate between their endome-\ntriosis symptoms and their gender identity, as\ntheir body changed with a flare in endometriosis\nsymptoms and became unhomelike.\nUnhomelikeness with diagnostic delays\nParticipants of this study had a median diagnos-\ntic delay of 12 years, with the shortest delay\nbeing 4 years and the longest delay being\n17 years. Participants median diagnostic delay\nof 12 years may indicate that gender diverse\npeople have extended diagnostic delays com-\npared to the diagnostic delay of 7–9 years that\ncisgender women with endometriosis experi-\nence (Ghai et al., 2020; Swift et al., 2024).\nParticipants reported struggling with endome-\ntriosis symptoms from their prepubescent and\nadolescent years and these symptoms worsened\nas they became older. Onyx, was 9 years old\nwhen they first started to experience symptoms\nhowever these symptoms were attributed to a\nbladder condition. Other participants related to\nOnyx in how their endometriosis diagnosis was\ndelayed due to misdiagnosis, as well as their\nconcerns regarding their symptoms being mini-\nmised, gaslit and not heard by Health Care\nProviders (HCPs), and the normalisation of\npainful menstruation by family, friends and\nsociety. Robin, a 26 year old non-binary indi-\nvidual from Australia reflected on how they felt\nwhen they were a child growing up with endo-\nmetriosis symptoms before their diagnosis, ‘ I\nused to think as a child like maybe I was bro-\nken, weird or putting it like blowing this pain\nout of proportion and I just needed to be stron-\nger to deal with it and I’ve learnt now that it’ s\nnot something that is supposed to be painful, . . .\nwhich is fine but it doesn’ t mean that I’m broken’.\nRobin’s quote may reveal how before they were\ndiagnosed with endometriosis they believed that\nthere was something wrong with them, however\nthe diagnosis of endometriosis may have helped\nthem in understanding their symptoms, which\nseemed to assist them in feeling more homelike\nwithin their bodies. When people are unable to\nmake sense nor have an understanding of their\nembodied experience, they may feel a sense of\nunhomelikeness (Svenaeus, 2000). From parti-\ncipants’ experiences we can observe how living\nwith endometriosis for a number of years with-\nout a clear understanding of what they were\nexperiencing may have created a sense of\nunhomelikeness.\nParticipants highlighted how the lack of\ninformation regarding endometriosis and that it\nalso affects gender diverse people may have\nimpacted on delays in diagnosis. Robin shared\nhow the lack of information on endometriosis\nand non-inclusive language being used when\nreferring to endometriosis may have delayed\ntheir diagnosis,\n1616 Journal of Health Psychology 30(7)\n\nFor me I never had regular periods as such. So\nfor me it was one of those things that there was\nno information about it when I was growing up,\nand even now there’s no information, but then\nalso being a non-binary person, like ninety per-\ncent of the information is directed at like\nwomen.\nA lack of information about endometriosis\nand that it affects gender diverse individuals\nmay have resulted in Robin needing to make\nsense of their symptoms on their own and a\nsense of unhomelikeness as they did not under-\nstand what was happening with their body.\nA further factor that may impact on the\ndelay of diagnosis of endometriosis for gender\ndiverse people was shared by Daniel, a\n21 year old, transmasculine individual from\nNorway. He shared how he was initially silent\nregarding his symptoms, ‘ I just refused\nbecause I saw pain as like the way people saw\nthe pain for men, that it was a sign of weak-\nness. I didn’ t want to appear weak ’. Daniel\nshared how he did not share his pain or symp-\ntoms with others as he did not want to be per-\nceived as weak from what society expects of\nmen. Daniel’s experience may describe an\nadditional layer in the complexity of social\nconstruction regarding gender stereotypes and\nsocietal norms. Daniel can be seen as trying\nto navigate society’s norms and manage his\ngender identity, which resulted in him making\nthe choice to manage his endometriosis symp-\ntoms alone. This may have left Daniel without\nan understanding of what was happening with\nhis body and an unhomelikeness to manage\nendometriosis symptoms alone.\nDelays in diagnosis may result in minimal\nunderstanding and support for the person with\nendometriosis, which may result in an unho-\nmelikeness of living with this disease. These\ndelays in diagnosis may result in gender\ndiverse people with endometriosis with years\nof unhomelikeness and a lack of understand-\ning of what they were experiencing within\ntheir bodies.\nUnhomelikeness with healthcare and\nfeelings of hopelessness\nMany of the participants described periods of\nhopelessness regarding their endometriosis\nhealthcare. This hopelessness seemed to be trig-\ngered by living in chronic pain and endometrio-\nsis symptoms, a lack of knowing when they\nwould receive the health care they desperately\nneeded and discrimination regarding their gen-\nder identity. One participant shared with us that\nthey had made an application for medical assis-\ntance in death as they felt so hopeless and let\ndown in their care. They shared that they had\nsince dropped this application. Other partici-\npants described long waiting periods to receive\nhealthcare and others an increase in sympto-\nmology while they wait for treatment. The\nexperience of hopelessness may be indicative\nof Svenaeus (2014) concept of homelikeness\nonly being possible when there is support, such\nas with healthcare, a change with external fac-\ntors, and is dependent on the severity of the dis-\nease. Homelikeness does not seem possible\nwhen there is a lack of support and a way for-\nward with living with this condition.\nEndometriosis treatment may exacerbate a\nsense of unhomelikeness with the body and\nfeelings of gender dysphoria when the treatment\nis not gender affirming. Participants reported\nexperiences regarding the pharmaceutical inter-\nventions that were prescribed by their HCP .\nMany participants related struggling with nega-\ntive side effects from the medication which\naffected their mental health, as well as triggered\ngender dysphoria. Onyx shared their anxiety\nregarding gender dysphoria being triggered by\nhormonal treatments,\nI will be starting Zoladex injections again soon\nand having oestrogen patches in the short term to\nreduce menopausal symptoms. If I decide to go\nahead with Zoladex long term I will need to have\nan oestrogen-progesterone IUD – I am not too\nkeen on this. I feel it will cause me gender dys-\nphoria and likely lots of pelvic pain.\nEder and Roomaney 1617\n\nEz, a 30 year old, transmasculine non-binary\nindividual from Canada, shared how they found\nfeminising hormones took a toll as their gender\nidentity did not form part of their treatment, ‘ at\nthis point I would rather just deal with the pain\nthan take feminising hormones cos I just can’ t\ndeal with it anymore ’. Ez described that they\nwould rather choose endometriosis pain than\nthe feminising hormones and the effects it had\non them. Ez’s quote may reveal them feeling\nlike they had to choose between two unhome-\nlike states; the debilitating symptoms of endo-\nmetriosis or the negative effect feminising\nhormones has on them. From Ez and Onyx’s\nexperiences we can view the importance of\nhealthcare that is inclusive of patients’ gender\nidentity.\nT owards a homelikeness of living with\nendometriosis as a gender diverse\nindividual\nUnder this theme we share the findings under\nthe subthemes: (1) Homelikeness with\nDiagnosis, (2) Homelikeness Through Gender\nAffirming Healthcare and (3) Homelikeness\nthrough Coping Strategies and a Process of\nAcceptance. In these subthemes we describe\nhow a sense of homelikeness of living with\nendometriosis as a gender diverse individual\nseems possible when there is an understanding\nof the diagnosis, one receives healthcare that is\ngender affirming, and through trying to cope,\nfind meaning and acceptance of living with this\ndisease.\nHomelikeness with diagnosis\nDiagnosis may help in providing people with\nunderstanding of what is happening with their\nbodies thereby aiding them in reaching a more\nhomelike state in relation to their bodies and\nbeing able to receive healthcare and support.\nParticipants described how the diagnosis of\nendometriosis gave them a sense of relief and\nunderstanding the symptoms they were\nexperiencing for years. Jo, a 25 year old, non-\nbinary individual from Ireland, shared how they\nexperienced relief with diagnosis,\nRelief, like an understanding in that sense, um\nbut there was also a little bit of anger obviously\nbecause my body was doing this, like I produced\nthis disease and it was upsetting as well, but like\nI’m now chronically ill for the rest of my life, and\nI have to try and keep it under control with like\njust the pain under control with medications and\nthat, so it’s a very stressful disease.\nFrom Jo’s quote we can perceive how hav-\ning a diagnosis was helpful for them in that it\nhelped them make sense of their symptoms.\nDiagnosis may assist in creating understanding\nfor people with endometriosis so that they can\nfeel more homelike living with this illness.\nHomelikeness through gender affirming\nhealthcare\nSome participants described the positive impact\nthat gender affirming healthcare treatment had\non their lives. River, a 24 year old non-binary\nindividual from the USA, related their experi-\nence of how surgery aided their treatment of\nendometriosis and was gender affirming. River\nhad shared that they were early in their recovery\nfrom surgery and sounded hopeful about their\nfuture, ‘ I had excision and a hysterectomy and\nso that was kind of like my big major surgery\nand ever since then like life is totally different ’.\nRiver described that life was different in that\nthey had relief from pain and said, ‘ I, you know,\nstarted to return to activities with my horse and\ngoing back to work and I just felt I could look\nin the mirror and just be like proud of my body\nfor the first time ’. Sawyer described in their\ndiary how they felt after a period of recovery\nfrom their surgery,\nFelt pretty good as far as surgical recovery goes.\nThe energy levels are getting better which I think\nis the depression starting to lift from not having\nperiods any longer. Mentally feeling brighter.\n1618 Journal of Health Psychology 30(7)\n\nFrom River and Sawyer’s experience we can\nobserve how endometriosis treatment that is\ngender affirming, aided them to feel more\nhomelike in their bodies. We can perceive the\ndifference gender affirming healthcare can have\non gender diverse people with endometriosis.\nInclusive healthcare may aid patients to feel\nmore homelike living with endometriosis.\nHomelikeness through coping strategies\nand a process of acceptance\nParticipants shared a number of ways they\nattempted to cope with endometriosis symp-\ntoms. Much time went into coping with\nendometriosis symptoms. Ez shared how they\nhave had to learn what works and the amount\nof time they spend in managing endometriosis\nsymptoms,\nIt’s pretty much half my day or more, just take\num medicine then and trying to do deep breath-\ning. Um that kind of stuff.\nParticipants had adapted their lifestyles and\nincorporated healthier diets, such as gluten free\nand vegan diets, increased their water intake,\nengaged in healthy sleep practices and rest, and\ntried to include regular exercise when there\nwere not mobility limitations. Some of the life-\nstyle changes and coping skills were not always\npossible when there were flares in symptomol-\nogy; such as healthy eating when there was\nnausea. Many participants shared that they\nfound it helpful to not overdo things on a day\nwith fewer symptoms so that they did not burn\nthemselves out and were not able to function\nthe next day. Although they shared that they\nexperienced this as a struggle because they then\nhad the ability to do what they needed to do,\nbut suffered afterwards. This may reveal how\nparticipants’ learned about living with endome-\ntriosis and tried to understand what would assist\ntheir bodies reaching a more homelike sense.\nPain management was critical for partici-\npants and they used various strategies including\nthe use of a heat or ice pack, a tens machine and\ntaking pain medication. Participants had tried\nvarious pain medications. For some participants\nthey found that pain medication was no longer\nhelpful. Other participants tried pain manage-\nment programmes, applications and others\nincluded practices of yoga and deep breathing,\nand mindfulness based practices. Participants\nsaid that they found that the clothing that they\nwore could help them when they were experien-\ncing endometriosis symptoms, when it was gen-\nder affirming. We can view the various ways\nthat participants attempted in their pain manage-\nment as a means to find a more homelike sense\nwith their bodies with endometriosis.\nJru shared how he coped when he experi-\nenced symptoms, such as his Storms,\nI guess I have more like a depressive mind set\ncreeping in and I kind of have to push myself to\nthink this is just temporary. Life is moments in\npermanence, it’s not forever. That is something I\nhold dear to me cause it’s important to keep\nreminding myself of.\nFrom Jru’s quote we can perceive how he\nfound it helpful to think about the pain and\nsymptoms as not permanent and that they\nwould shift. Jru’s quote may reveal how he\ntried to reach a more homelike state of living\nwith endometriosis by trying to understand and\ncope with his symptoms.\nA few participants shared that they supported\npeople with endometriosis which seemed to\ngive them meaning. Much of this work was\naround creating awareness and advocating for\ngender diverse people with endometriosis. This\nwork seemed to create meaning for them by\nsharing information, advocating for others and\nsharing their experience with others, which\nseemed to result in supporting them in a more\nhomelike sense of living with endometriosis.\nWe can view the various coping strategies and\nhealthy behaviours that participants practiced as\nan attempt to feel more homelike in their bodies\nand within their gender identity whilst living\nwith endometriosis.\nEder and Roomaney 1619\n\nSome participants described how they came\nto accept living with endometriosis. Remy\nshared,\nIt felt very similar to the way of like figuring out\nmy gender identity, it was kind of like, it was\neerily similar where it is like, we’re okay you\nknow I’m in slight pain but this is alright or I have\nlike icky feelings in my stomach when someone\nrefers to me as a woman but I’m like, I’m fine\neveryone feels a bit weird sometimes . . . and then\nit kind of evolving into the realisation, no you\nneed to take care of yourself which was like the\nsame realisation that I came to when I realised I\nwas non-binary and when I finally accepted that\nyeh, you’re disabled sweets.\nFrom Remy’s quote we can perceive how\nthey adjusted to living with endometriosis\nthrough a similar process of acceptance of their\ngender identity. Remy’s acceptance that they\nare disabled and need to take care of them-\nselves, seemed to help them reach a more\nhomelike state with their body.\nJru shared his feeling regarding acceptance\nof living with endometriosis as a transgender\nman, ‘ I think going forward for me, endo spe-\ncifically, is that I’m going to have to just really\nrealise that my narrative is just a little bit dif-\nferent, and that’ s okay and really just try and\nmake the best of it ’.\nFrom Jru’s quote we can perceive how Jru’s\nacceptance that his narrative is different may\naid him in living with endometriosis by moving\nfrom an unhomelikeness state to a more home-\nlike state. From Remy and Jru’s quotes we can\nwitness that although they both continue to\nstruggle with endometriosis as gender diverse\nindividuals, they have acceptance of living with\nthis condition and have entered a more home-\nlike state with their body.\nDiscussion\nFrom the findings shared with the use of\nSvenaeus’ theory, Phenomenology of Medicine,\nwe explored how gender diverse people with\nendometriosis experience a sense of unhomeli-\nkeness with their body, their gender identity and\nbeing-in-the-world. Unhomelikeness for gender\ndiverse people with endometriosis has an addi-\ntional layer, as not only does endometriosis cre-\nate a sense of unhomelikeness with the body\nand being-in-the-world, but in addition it may\ncreate a sense of unhomelikeness within one’s\ngender identity. The severity of endometriosis\nsymptoms, experienced by our participants, cre-\nated an unhomelikeness with their bodies. We\ncan view this in relation to studies on cisgender\nwomen that describe how endometriosis symp-\ntoms have an adverse impact on their lives\n(DiV asta et al., 2018; Hunsche et al., 2023; V an\nNiekerk et al., 2022). Not only do endometrio-\nsis symptoms create an unhomelikeness with\nthe body, but in addition may also result in gen-\nder dysphoria, which may be interpreted as a\nfurther unhomelikeness for the gender diverse\nindividual with endometriosis. Endometriosis is\na gendered disease which has implications of\nexclusion (Jones, 2020) for the gender diverse\nindividual and may result in gender dysphoria.\nThe severity of endometriosis symptoms\naffected participants’ choices of gender affirm-\ning gear, which negatively impacted on them\nand may have resulted with an unhomelike state\nwith their bodies and being-in-the-world.\nParticipants reported struggling with symp-\ntoms for many years, with a median diagnostic\ndelay of 12 years, without understanding the\ncause of the symptomology creating a feeling\nof incongruence with their understanding of\ntheir relationship with their bodies. Delays in\ndiagnosis also resulted in minimal support and\nunderstanding of this disease, resulting in a\nsense of unhomelikeness. Diagnostic delays of\nendometriosis in cisgender women can average\n7–9 years and have a negative impact on the\nlife of the undiagnosed patient (Ghai et al.,\n2020; Swift et al., 2023; Tewhaiti-Smith et al.,\n2022). Cisgender women reported that diagno-\nsis helped them to create meaning of their ear-\nlier life experiences of endometriosis symptoms\n(Nielsen et al., 2023) and gave them a sense of\n1620 Journal of Health Psychology 30(7)\n\nrelief (Ellis et al., 2022). Svenaeus (2014) high-\nlighted the importance of understanding so that\na person with an illness can move to a more\nhomelike state. Participants reported relief with\ntheir diagnosis.\nParticipants reported feelings of hopeless-\nness in living with endometriosis as many\nexperienced periods of time, and some were\nstruggling at the time of the interviews, with\nhealthcare treatment and a way forward.\nWithout a way forward with living with endo-\nmetriosis it may create a sense of unhomelike-\nness. Cisgender women that experience\nendometriosis treatment that they experience as\ndestructive, negatively affected how they felt\nabout themselves and their bodies (Calvi et al.,\n2023; Grundstro¨m et al., 2018). Participants\nhad an added layer of unhomelikeness to miti-\ngate as they received treatment that was not\ninclusive of their gender identity. This may\nreveal the critical nature of supportive health-\ncare that has a focus on gender affirming care\nin the treatment of endometriosis.\nHomelikeness seemed possible with diagno-\nsis as it created an understanding for the partici-\npant of the symptoms they were experiencing.\nDiagnosis and supportive treatment in cisgender\nwomen with endometriosis strengthened their\nhealth and wellbeing (Apers et al., 2018;\nPettersson and Bertero¨, 2 02 0; Ro om an ey a nd\nKagee, 2018). Treatment that is approached with\nexpertise and a supportive HCP for cisgender\nwomen with endometriosis can have a positive\nimpact (Pettersson and Bertero ¨, 2020). Some\nparticipants reported healthcare that was inclu-\nsive of addressing their endometriosis and their\ngender identity. Treatment for endometriosis that\nis gender affirming can bring about a homelike-\nness between the illness, gender, the body and\nbeing-in-the-world. Participants applied a num-\nber of coping strategies that assisted them in\nfinding a more homelike state. Svenaeus (2014)\ndescribed that a person can experience a sense\nof homelikeness with their body whilst living\nwith an illness, under certain conditions.\nHomelikeness is dependent on the severity of\nthe illness, and the reinterpretation of the sense\nof self with the illness (Svenaeus, 2014). Some\nparticipants reflected on how their coming to\nterms of living with this disease has been a pro-\ncess. From our findings we can see that gender\ndiverse people with endometriosis may experi-\nence additional barriers in reaching a sense of\nhomelikeness with additional diagnostic delays,\nendometriosis symptoms that foster an unhome-\nlikeness with the body as well as their gender\nidentity which may result in gender dysphoria,\nand endometriosis treatment that is not gender\ninclusive. It is pertinent that gender diverse peo-\nple with endometriosis receive healthcare that is\ninclusive of their gender identity and that is gen-\nder affirming. Gender diverse people with endo-\nmetriosis may need additional supports as they\nmay struggle with gender dysphoria. We recom-\nmend further research focusses on gender\naffirming endometriosis healthcare.\nLimitations\nThis study’s data set was small as it was a qua-\nlitative study and included in-depth interviews.\nIt may be useful to have country specific data,\nrather than data collected internationally due to\ncountry sociopolitical contextual differences.\nPeople without access to technology may have\nbeen excluded from taking part in this study as\nit was advertised and conducted online.\nParticipation was limited to English-speakers\nonly, which may have excluded interview\ncandidates.\nConclusion\nIn this article we have discussed the lived expe-\nrience of transgender and non-binary people liv-\ning with endometriosis in relation to Svenaeus\n(2014) who described an unhomelike and\nhomelike state of being-in-the-world when liv-\ning with an illness. This study revealed that\ntransgender and non-binary people with endo-\nmetriosis may experience endometriosis symp-\ntoms that create an unhomelikeness with the\nEder and Roomaney 1621\n\nbody and their gender identity. We recommend\nthat further awareness is created regarding\nendometriosis and gender diverse people living\nwith endometriosis, so that there are fewer diag-\nnostic delays and that endometriosis healthcare\nfor gender diverse people is gender inclusive.\nGender diverse people with endometriosis may\nbenefit from additional support structures and\nthis should be considered in their treatment.\nAcknowledgements\nWe wish to acknowledge our participants’ invaluable\ntime and their life stories they shared with us as part\nof this study.\nData sharing statement\nThe participants of this study did not give written\nconsent for their original transcripts to be shared pub-\nlicly due to the sensitive nature of the research sup-\nporting data is not available.\nDeclaration of conflicting interests\nThe authors declared no potential conflicts of interest\nwith respect to the research, authorship, and/or publi-\ncation of this article.\nFunding\nThe authors received no financial support for the\nresearch, authorship, and/or publication of this\narticle.\nEthics approval\nThis study was approved by the Health Research and\nEthics (HREC) Committee at Stellenbosch\nUniversity reference number: S21/07/118 (PhD) and\nproject ID 22452.\nInformed consent\nAll participants signed consent forms to volunteer in\nthe study and to have the findings published.\nORCID iDs\nCheryl Joy Eder https://orcid.org/0000-0002-\n7448-009X\nRizwana Roomaney\nhttps://orcid.org/0000-0002-\n3585-4992\nReferences\nApers S, Dancet EAF, Aarts JWM, et al. 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