Transgender and non-binary people's experience of endometriosis

There is a lack of research on gender diverse people’s experiences with endometriosis. W e explored the experience of 11 transgender and non-binary people with endometriosis using phenomenology. W e collected data through multiple interviews and diaries and constructed two themes using hermeneutic analysis: (1) Unhomelikeness of Living with Endometriosis and being Gender Diverse, and (2) T owards a Homelikeness of Living with Endometriosis as a Gender Diverse Individual, which we discussed in relation to Svenaeus Phenomenology of Medicine. Unhomelikeness is an experience of disconnection with our bodies and being- in-the-world as a result of living with a chronic disease. We show how gender diverse people with endome- triosis may have additional layers of unhomelikeness due to further diagnostic delays, endometriosis symp- toms that may trigger gender dysphoria and experiences with treatment that are not inclusive of their gender identity. W e advocate for additional support and awareness for gender diverse people with endometriosis.

endometriosis, experience, gender diverse, non-binary, phenomenology, transgender

Endometriosis is a gynaecological condition in which uterine tissue grows outside of the uterus (National Institute for Health and Care Excellence [NICE], 2017). Symptoms of endo- metriosis include chronic pelvic pain, dysme- norrhoea (painful menstruation), painful sexual intercourse, cyclical gastrointestinal symptoms, cyclical urinary symptoms and infertility (NICE, 2017). Endometriosis has been described as causing a devastating effect on people’s quality of life, impacting on the physi- cal, psychological, social and sexual areas of a person’s life (Kuznetsov et al., 2017). Although endometriosis is a common diagnosis, there are often delays in diagnosis with this condition of between 7 and 9 years for cisgender (a person who identifies their gender with the sex they were assigned at birth (Merriam-Webster, 2024)) women (Ghai et al., 2020; Swift et al., 2024). It is estimated that endometriosis is diag- nosed in 10% of cisgender women (World Health Organization [WHO], 2023) and 25% of transgender men (Okita et al., 2021). A number of studies have explored the experience of Stellenbosch University, South Africa Corresponding author: Cheryl Eder , Department of Psychology, Faculty of Arts and Social Sciences, Stellenbosch University, Private Bag X1, Matieland, Stellenbosch 7602, South Africa. Email: [email protected] living with endometriosis (Chapron et al., 2015; Cole et al., 2021; Denny and Mann, 2007; Fagervold et al., 2009; Fourquet et al., 2010; Ha˚llstam et al., 2018; Rea et al., 2020; Roomaney and Kagee, 2018), however these studies described cisgender women’s experi- ences of living with this disease. Chadha (2020) has highlighted how marginalised groups such as people of colour and gender diverse people’s voices have been missing from endometriosis research. This study is important as it contributes to sharing gender diverse peo- ple’s missing narratives in the experience of liv- ing with this disease in endometriosis research. We explore these voices through our collection of data in which we had three interview encounters and a diary from each participant. This method provided a rich description of lived experience of participants’ experience of identifying as gender diverse and living with endometriosis. In this study we used a phenomenological lens with Svenaeus (2014) Phenomenology of Medicine as our theoretical point of departure. Svenaeus (2014) described that our bodies are our way of perceiving and experiencing the world. Pain and illness can deeply affect our connection with our bodies and the world, as our health affects our mood which then impacts on our experience of the world (Svenaeus, 2014). This disconnection can result in unho- melikeness with the body and of being-in-the- world. Svenaeus (2000, 2014) described states of homelikeness and unhomelikeness in relation to the experience of illness. Homelikeness is when we are operating as if everything is nor- mal, things are as usual in terms of our every- day lives (Svenaeus, 2014). Illness disrupts the meaning and meaning processes of lived experi- ence in a person’s day to day life (Svenaeus, 2014). Unhomelikeness can lead to feelings of helplessness, despair, disorientation and not feeling at home in our being-in-the-world (Svenaeus, 2014). Svenaeus (2014) described how illness changes the structure of the self, and through this a person can adjust to a homelikeness. A sense of homelikeness is dependent on the severity of the illness, and the reinterpretation of the sense of self with the ill- ness which may be possible through the change of outer circumstances, support and understand- ing of the self in this unhomelike state (Svenaeus, 2014). Healthcare professionals can benefit from viewing their patients from a phe- nomenological lens so that they can see the unhomelike illness and have a better under- standing of their patients (Svenaeus, 2014). In this way, a phenomenological approach to understanding illness can be helpful. In this study, we consider a further layer that the gen- der diverse person with endometriosis may experience with unhomelikeness. We can also interpret that gender diverse people’s experience of gender dysphoria could result in an unhome- like state, as it is described as a sense of unease that a gender diverse individual can experience with the disparity between their gender identity and their biological sex at birth (National Health Service, 2020). Gender euphoria, a feel- ing of accordance and joy in one’s gender (Beischel et al., 2022), may then be interpreted as a more homelike state. We used this theory to describe transgender and non-binary people with endometriosis experience of a sense of unhomelikeness with their bodies, being-in-the- world and with their gender identity. Aim Our aim of this article is to report on transgen- der and non-binary people’s experience of liv- ing with endometriosis.

Ethical aspects This study was approved through an ethics review committee through the Health Research and Ethics Committee at Stellenbosch Univer- sity (reference number: S21/07/118 (PhD) and project ID 22452). All participants completed consent forms. We made use of pseudonyms in Eder and Roomaney 1611 the write up of our findings to protect partici- pants’ confidentiality. Authors gifted partici- pants with $10 Amazon gift card to express their appreciation for their time that they volun- teered for the study. We made provision for a counselling session due to the sensitive nature of this study. Participants Purposeful and snowball sampling was used to recruit participants for this study. Participants were recruited by advertising the study interna- tionally through online social media endome- triosis and gender diverse support groups. We advertised the study from August 2021 to April 2022. Our advertisement specified that partici- pants needed to identify as transgender and/or as non-binary, have endometriosis or suspected endometriosis, be able to speak English, and be 18 years old or older. The advert provided the first authors details to contact if they were inter- ested in or had questions regarding the study. Twenty-six people contacted the first author to request more information and they expressed interest in the study. The first author shared fur- ther information, answered interested individu- als’ questions and provided consent forms. Eleven people volunteered for the study and signed consent forms. Data collection We collected data through three semi-structured interviews with each participants and a diary that participants reflected on their experience of living with endometriosis for 3 months. Interviews were between 45 and 60 minutes each and were conducted on Skype or Zoom, and we gave participants the option if they wanted to have the camera on or off. We col- lected data between January and December 2022. We conducted three interviews per parti- cipant and participants completed a 3 month diary as this study is part of a broader study in which we are exploring the lived experience of transgender and non-binary people living with endometriosis. The broader study has four

in which we aimed to explore trans- gender and non-binary people’s experience of living with endometriosis: (1) Perceptions of healthcare in relation to endometriosis, (2) the lived experience of endometriosis, (3) percep- tions of psychosocial support in regards to liv- ing with endometriosis and (4) the experience of integration and support from the endometrio- sis community. The three interviews were focused on the four objectives and the diary provided data on the day to day experience of living with endometriosis. This article focusses on the lived experience of transgender and non- binary people with endometriosis. Data analysis We used Hermeneutic Analysis and followed a series of steps recommended by Patterson and Williams (2002) to analyse the participant inter- views and diaries. In this analysis process we made use of the Hermeneutic Circle in which we read and reread transcripts, reflected and made use of a reflexive journal, took notes and applied ourselves to understand in relation to the theory of Svenaeus (2014). In the first step we reflected on our experience of the inter- views we recorded and our reading of the dia- ries. In the second step, we numbered lines of the transcribed interviews and diaries so that we could reference the data. We uploaded these referenced documents onto Atlas ti. In the third step we recorded reflections in a journal after reading and re-reading the data. In the fourth step we created meaning units by highlighting and labelling pieces of text in Atlas ti. We then reflected on these meaning units and created themes in step 5. In the sixth step we reflected on the interrelatedness of themes to each other, which we found shifted from having a number of themes on transgender and non-binary peo- ple’s experience of living with endometriosis. In the final step, we wrote up the findings and our interpretation while we continued to reflect 1612 Journal of Health Psychology 30(7) by re-referring to the data, theory and with one another. We reflected on the importance of the aim of the study, participant’s voices and their lived experience of living with endometriosis as gender diverse individuals. Findings From the data analysis process described above, we discuss the findings under two themes while we refer to Svenaeus theory of Phenomenology of Medicine. The themes are: (1) Unhomelike- ness of Living with Endometriosis and being Gender Diverse, and (2) Towards a Homelike- ness of Living with Endometriosis as a Gender Diverse Individual. Under the two themes we discuss the findings in relation to an unhome- like and homelike state that transgender and non-binary people navigate while living with endometriosis in relation to their bodies, being- in-the-world and their gender identity. Under the first theme we discussed the findings with the use of three subthemes: (1) Unhomelikeness through Symptoms: The Effects on the Body and Gender Dysphoria, (2) Unhomelikeness with Diagnostic Delays and (3) Unhomelike- ness with Healthcare and Feelings of Hopeless- ness. Under the second theme we discussed the findings under a further three subthemes: (1) Homelikeness with Diagnosis, (2) Homelike- ness Through Gender Affirming Healthcare and (3) Homelikeness through Coping Strategies and a Process of Acceptance. Description of participants We had 11 participants volunteer to take part in the study. These 11 participants came from USA, New Zealand, Australia, Norway, Canada and Ireland. Two participants shared that they identified as transmasculine, two individuals shared that they identified as transmasculine and non-binary, and seven participants shared that they identified as non-binary. The majority of participants shared that they had a diagnosis of endometriosis after a laparoscopic procedure. The mean age of participants was 26 years, with the youngest participant at 21 years and the eld- est was 31 years old. One participant identified as Norwegian, one participant identified as British, six participants identified as white, one person identified as mixed race, Asian, one per- son identified as Caucasian and Jewish and one participant identified as Ashkenazi Jewish. Unhomelikeness of living with endometriosis and being gender diverse Under this theme we share participants’ experi- ences of a sense of unhomelikeness with living with endometriosis with the use of subthemes: (1) Unhomelikeness through Symptoms: The Effects on the Body and Gender Dysphoria, (2) Unhomelikeness with Diagnostic Delays and (3) Unhomelikeness with Healthcare and Feelings of Hopelessness. With these subthemes we explored participants’ experiences of how endometriosis symptoms result in feeling unho- melike with the body and their gender identity, the causes and how delays in diagnosis extend the sense of unhomelikeness, and how health- care that was not gender affirming resulted in an unhomelikeness state. Unhomelikeness through symptoms: The effects on the body and gender dysphoria Participants reported symptoms such as intense pain primarily in the pelvic area of the body, pain with menstruation, pain with ovulation, abnormal menstruation, clots, cysts, problems with the bladder, contractions of the uterus, nausea, gastrointestinal and bowel symptoms, pain with sex, neuropathy, neurological symp- toms, headaches, fatigue and weakness, sciatica and psychological symptoms of depression and anxiety. Jru, a 29 year old, transmasculine indi- vidual from the USA, described how endome- triosis affected him from the age of 11 years old, ‘ So it’ s really been a huge dark shadow like haunting over my head this entire time with trauma and stuff ’. He also described Eder and Roomaney 1613 endometriosis pain, ‘ as if your body is a wet towel and somebody is turning it and wringing it out over and over again ’. He further described the pain, ‘ like someone stabbing you with a knife and you don’ t see it coming and it just happens intermittently but it’ s really sharp, really fast ’, and ‘ like fibres being pulled apart from beneath my bellybutton ’. Other partici- pants used similar descriptions for their pain with endometriosis and they expressed that they were plagued with this symptom and other symptoms debilitating their lives. Crow, a 31 year old non-binary individual from Canada reflected in their diary about feeling tired, ‘ Tired. I feel sick, but I’m not . . . like . . . sick, sick. My body makes me feel like garbage every day’. Crow later wrote in their diary about symptoms they struggled with during the day, ‘ I wound up with cramps and vaginal nerve shocks . . ., severe vulva soreness, . . . inflamma- tion, swelling to the point I look pregnant . . . Why the fuck couldn’ t I be born with a function- ing body? ’ From Crow’s reflections on their symptoms we can see how they struggled with symptoms and questioned why they had to live with endometriosis. Remy, a 27 year old non- binary individual from Canada related feeling fearful and helpless living with endometriosis, ‘ So there is a lot of just I guess fear but also just grief because like, my life seems like this is it’. From Remy’s description of feelings of fear and grief from living with endometriosis, we may interpret that Remy seems to attempt to come to terms with living with endometriosis, how endometriosis affected them and resulted in loss, and how they did not know how endo- metriosis would affect their body, making the body alien and unhomelike. The debilitating nature of these symptoms may result in a sense of unhomelikeness with the body. Jru compared endometriosis to a ‘huge dark shadow’, Crow shared how endometriosis made them feel terrible each day and Remy shared how living with endometriosis gives them feelings of fear and grief. Svenaeus (2000) described unhomelikeness as a sense of danger, strange and alien to one’s sense of self. Through the description of participants’ endometriosis symptomology we can observe an unhomelike- ness with the body as debilitating endometriosis symptoms are at the forefront of their existence. For gender diverse people, the symptoms of endometriosis can have additional sequelae. Endometriosis and endometriosis-associated menstrual symptoms may trigger gender dys- phoria. Endometriosis symptoms can be heigh- tened during menstruation (NICE, 2017). Both menstruation and endometriosis are gendered, and have connotations and language of being associated with cisgender women (Chrisler et al., 2016; Jones, 2020). Endometriosis is gendered in society and throughout available literature (Jones, 2020). An example of the gen- dered language used in the literature on endo- metriosis can be viewed from the WHO (2023) as they describe endometriosis as a condition affecting women. The gendering of endometrio- sis may leave gender diverse people with a sense of unhomelikeness as they are excluded from endometriosis discourse and have to navi- gate the incongruence in gendered language to their bodies. Menstruation has been shown to increase gender dysphoria for people who do not identify as cisgender women (Schwartz et al., 2023). Endometriosis may trigger gender dysphoria as the endometriosis symptoms are often heightened during menstruation. There- fore during menstruation, gender diverse people may have to manage heightened endometriosis symptoms while they manage an alarming reminder of the incongruence of their gender identity and their gender assigned at birth. In addition, endometriosis symptoms have been shown to negatively affect body image (Calvi et al., 2023) which may then affect people’s relationships with their bodies. Sawyer, a 31 year old non-binary individual from Australia shared in their diary that their men- strual cycle made them feel dysphoric, ‘ Bleeding very uncomfortable and causing 1614 Journal of Health Psychology 30(7) dysphoria’. They later shared how endometrio- sis symptoms affected them, Feeling major gender dysphoria for the changes in my body due to endo belly, weight gain from medications, constipation and injuries affecting my mobility. Not feeling good about how I look. Feeling emotionally raw. We can see from Sawyer’s experience how endometriosis symptoms may have triggered gender dysphoria, which left them feeling vul- nerable. Sawyer described changes in their body due to the symptoms of endometriosis. Some of these endometriosis symptoms are also common experiences with menstruation. This may then result in gender dysphoria as Sawyer needed to manage symptoms of a disease asso- ciated with their sex assigned at birth, which may have created a sense of incongruence with their gender identity and their biological sex. Sawyer’s experience of endo belly, increase weight gain, constipation and injuries affecting their mobility may also make them feel unho- melike and alien in their body, and within their gender identity. We can also view the cumula- tive impact of trying to manage endometriosis symptoms, the impact of the disease, the treat- ments and one’s gender identity has on them. Other participants shared how endometriosis symptoms of bloating, endo belly, cramps, menstrual bleeding and pain can trigger gender dysphoria. Onyx, a 21 year old non-binary individual from New Zealand, shared in their diary about their endometriosis symptoms that triggered gender dysphoria, Pretty severe abdo (abdomen) and lower back cramps yesterday and today. Haven’t started my period yet though. Haven’t been feeling too good overall. Gender dysphoria is getting worse with the cramps. Participants related how endo belly affected the clothing they could wear and how this impacted on gender dysphoria. Crow shared in their diary, I’ve had to get rid of nearly all of my clothing to accommodate the ever worsening swelling. It’s exhausting. On top of that, having to adapt my entire wardrobe to accommodate my abdominal and pelvic pain without triggering dysphoria has been some trial and error, for sure. Crow seemed to attempt multiple methods to manage an unhomelike state of gender dys- phoria that was triggered by endometriosis. Sawyer shared how endometriosis symptoms affected gender affirming gear, My binder arrived and I tried it on and it felt good! It also didn’t affect my endo belly at all, which I was concerned about possibly happening. So gender affirmation with no negative impact on my pain! Huge win! I felt really good trying it on for the first time and seeing how I looked in the mirror. It was nice because it’s been really uncom- fortable to wear my packer due to pelvic pain. Sawyer’s quote may reveal how the use of gear to assist gender diverse people in their gender identity may be affected by endometrio- sis symptoms as they were no longer able to wear their packer due to pelvic pain. From both Crow and Sawyer’s experience it is important to consider the value that gender diverse people experience from being able to wear clothes that are gender affirming and the positive impact that gender affirming gear can have as it can aid in managing gender dysphoria and mental health distress (Diana et al., 2024). From these experiences we can see how endometriosis symptomology places constraints on gender affirming clothes and gear which may result in a sense of unhomelikeness within their body and being-in-the-world while they manage painful symptomology. Jru found naming his heightened symptoms, ‘Storms’, helpful. He said, PMS distress I’m outing myself that I, you know, have a specific body type. So if I say ‘Storm’ it’s less gender specific and that’s why I say storm, just to clarify. Plus if you have that visual of a hurricane or tsunami, some kind of like storm, Eder and Roomaney 1615 like have you seen Wizard of Oz or whatever it’s called, the movie, but there is a tornado. Y eh, so that is what I am envisioning when I say I am in a Storm, it’s like it’s really hard to stay grounded and be like feel calm and safe within my body. From Jru’s quote we can see how gendered language affected Jru. By Jru naming pre- menstrual endometriosis symptoms, Storms, he found it assisted him in describing his experi- ence of pain and he made the symptom more acceptable to himself. Jru described how the language of menstrual cycles and PMS have connotations around gender identity and are pri- marily associated with cisgender women and so by using this language, Jru would need to dis- close his gender identity. We can also observe how endometriosis symptoms and the language and societal beliefs of menstrual cycles being gendered affect Jru’s sense of safety within his body, which may create an unhomelike state between Jru, his body, his gender identity and being-in-the-world. We can perceive how endometriosis symp- toms have a negative effect on participants and can result in a sense of unhomelikeness with the body. There can be a further layer of unhomeli- keness for gender diverse people with endome- triosis as endometriosis symptoms can trigger gender dysphoria. Participants described how they needed to mitigate between their endome- triosis symptoms and their gender identity, as their body changed with a flare in endometriosis symptoms and became unhomelike. Unhomelikeness with diagnostic delays Participants of this study had a median diagnos- tic delay of 12 years, with the shortest delay being 4 years and the longest delay being 17 years. Participants median diagnostic delay of 12 years may indicate that gender diverse people have extended diagnostic delays com- pared to the diagnostic delay of 7–9 years that cisgender women with endometriosis experi- ence (Ghai et al., 2020; Swift et al., 2024). Participants reported struggling with endome- triosis symptoms from their prepubescent and adolescent years and these symptoms worsened as they became older. Onyx, was 9 years old when they first started to experience symptoms however these symptoms were attributed to a bladder condition. Other participants related to Onyx in how their endometriosis diagnosis was delayed due to misdiagnosis, as well as their concerns regarding their symptoms being mini- mised, gaslit and not heard by Health Care Providers (HCPs), and the normalisation of painful menstruation by family, friends and society. Robin, a 26 year old non-binary indi- vidual from Australia reflected on how they felt when they were a child growing up with endo- metriosis symptoms before their diagnosis, ‘ I used to think as a child like maybe I was bro- ken, weird or putting it like blowing this pain out of proportion and I just needed to be stron- ger to deal with it and I’ve learnt now that it’ s not something that is supposed to be painful, . . . which is fine but it doesn’ t mean that I’m broken’. Robin’s quote may reveal how before they were diagnosed with endometriosis they believed that there was something wrong with them, however the diagnosis of endometriosis may have helped them in understanding their symptoms, which seemed to assist them in feeling more homelike within their bodies. When people are unable to make sense nor have an understanding of their embodied experience, they may feel a sense of unhomelikeness (Svenaeus, 2000). From parti- cipants’ experiences we can observe how living with endometriosis for a number of years with- out a clear understanding of what they were experiencing may have created a sense of unhomelikeness. Participants highlighted how the lack of information regarding endometriosis and that it also affects gender diverse people may have impacted on delays in diagnosis. Robin shared how the lack of information on endometriosis and non-inclusive language being used when referring to endometriosis may have delayed their diagnosis, 1616 Journal of Health Psychology 30(7) For me I never had regular periods as such. So for me it was one of those things that there was no information about it when I was growing up, and even now there’s no information, but then also being a non-binary person, like ninety per- cent of the information is directed at like women. A lack of information about endometriosis and that it affects gender diverse individuals may have resulted in Robin needing to make sense of their symptoms on their own and a sense of unhomelikeness as they did not under- stand what was happening with their body. A further factor that may impact on the delay of diagnosis of endometriosis for gender diverse people was shared by Daniel, a 21 year old, transmasculine individual from Norway. He shared how he was initially silent regarding his symptoms, ‘ I just refused because I saw pain as like the way people saw the pain for men, that it was a sign of weak- ness. I didn’ t want to appear weak ’. Daniel shared how he did not share his pain or symp- toms with others as he did not want to be per- ceived as weak from what society expects of men. Daniel’s experience may describe an additional layer in the complexity of social construction regarding gender stereotypes and societal norms. Daniel can be seen as trying to navigate society’s norms and manage his gender identity, which resulted in him making the choice to manage his endometriosis symp- toms alone. This may have left Daniel without an understanding of what was happening with his body and an unhomelikeness to manage endometriosis symptoms alone. Delays in diagnosis may result in minimal understanding and support for the person with endometriosis, which may result in an unho- melikeness of living with this disease. These delays in diagnosis may result in gender diverse people with endometriosis with years of unhomelikeness and a lack of understand- ing of what they were experiencing within their bodies. Unhomelikeness with healthcare and feelings of hopelessness Many of the participants described periods of hopelessness regarding their endometriosis healthcare. This hopelessness seemed to be trig- gered by living in chronic pain and endometrio- sis symptoms, a lack of knowing when they would receive the health care they desperately needed and discrimination regarding their gen- der identity. One participant shared with us that they had made an application for medical assis- tance in death as they felt so hopeless and let down in their care. They shared that they had since dropped this application. Other partici- pants described long waiting periods to receive healthcare and others an increase in sympto- mology while they wait for treatment. The experience of hopelessness may be indicative of Svenaeus (2014) concept of homelikeness only being possible when there is support, such as with healthcare, a change with external fac- tors, and is dependent on the severity of the dis- ease. Homelikeness does not seem possible when there is a lack of support and a way for- ward with living with this condition. Endometriosis treatment may exacerbate a sense of unhomelikeness with the body and feelings of gender dysphoria when the treatment is not gender affirming. Participants reported experiences regarding the pharmaceutical inter- ventions that were prescribed by their HCP . Many participants related struggling with nega- tive side effects from the medication which affected their mental health, as well as triggered gender dysphoria. Onyx shared their anxiety regarding gender dysphoria being triggered by hormonal treatments, I will be starting Zoladex injections again soon and having oestrogen patches in the short term to reduce menopausal symptoms. If I decide to go ahead with Zoladex long term I will need to have an oestrogen-progesterone IUD – I am not too keen on this. I feel it will cause me gender dys- phoria and likely lots of pelvic pain. Eder and Roomaney 1617 Ez, a 30 year old, transmasculine non-binary individual from Canada, shared how they found feminising hormones took a toll as their gender identity did not form part of their treatment, ‘ at this point I would rather just deal with the pain than take feminising hormones cos I just can’ t deal with it anymore ’. Ez described that they would rather choose endometriosis pain than the feminising hormones and the effects it had on them. Ez’s quote may reveal them feeling like they had to choose between two unhome- like states; the debilitating symptoms of endo- metriosis or the negative effect feminising hormones has on them. From Ez and Onyx’s experiences we can view the importance of healthcare that is inclusive of patients’ gender identity. T owards a homelikeness of living with endometriosis as a gender diverse individual Under this theme we share the findings under the subthemes: (1) Homelikeness with Diagnosis, (2) Homelikeness Through Gender Affirming Healthcare and (3) Homelikeness through Coping Strategies and a Process of Acceptance. In these subthemes we describe how a sense of homelikeness of living with endometriosis as a gender diverse individual seems possible when there is an understanding of the diagnosis, one receives healthcare that is gender affirming, and through trying to cope, find meaning and acceptance of living with this disease. Homelikeness with diagnosis Diagnosis may help in providing people with understanding of what is happening with their bodies thereby aiding them in reaching a more homelike state in relation to their bodies and being able to receive healthcare and support. Participants described how the diagnosis of endometriosis gave them a sense of relief and understanding the symptoms they were experiencing for years. Jo, a 25 year old, non- binary individual from Ireland, shared how they experienced relief with diagnosis, Relief, like an understanding in that sense, um but there was also a little bit of anger obviously because my body was doing this, like I produced this disease and it was upsetting as well, but like I’m now chronically ill for the rest of my life, and I have to try and keep it under control with like just the pain under control with medications and that, so it’s a very stressful disease. From Jo’s quote we can perceive how hav- ing a diagnosis was helpful for them in that it helped them make sense of their symptoms. Diagnosis may assist in creating understanding for people with endometriosis so that they can feel more homelike living with this illness. Homelikeness through gender affirming healthcare Some participants described the positive impact that gender affirming healthcare treatment had on their lives. River, a 24 year old non-binary individual from the USA, related their experi- ence of how surgery aided their treatment of endometriosis and was gender affirming. River had shared that they were early in their recovery from surgery and sounded hopeful about their future, ‘ I had excision and a hysterectomy and so that was kind of like my big major surgery and ever since then like life is totally different ’. River described that life was different in that they had relief from pain and said, ‘ I, you know, started to return to activities with my horse and going back to work and I just felt I could look in the mirror and just be like proud of my body for the first time ’. Sawyer described in their diary how they felt after a period of recovery from their surgery, Felt pretty good as far as surgical recovery goes. The energy levels are getting better which I think is the depression starting to lift from not having periods any longer. Mentally feeling brighter. 1618 Journal of Health Psychology 30(7) From River and Sawyer’s experience we can observe how endometriosis treatment that is gender affirming, aided them to feel more homelike in their bodies. We can perceive the difference gender affirming healthcare can have on gender diverse people with endometriosis. Inclusive healthcare may aid patients to feel more homelike living with endometriosis. Homelikeness through coping strategies and a process of acceptance Participants shared a number of ways they attempted to cope with endometriosis symp- toms. Much time went into coping with endometriosis symptoms. Ez shared how they have had to learn what works and the amount of time they spend in managing endometriosis symptoms, It’s pretty much half my day or more, just take um medicine then and trying to do deep breath- ing. Um that kind of stuff. Participants had adapted their lifestyles and incorporated healthier diets, such as gluten free and vegan diets, increased their water intake, engaged in healthy sleep practices and rest, and tried to include regular exercise when there were not mobility limitations. Some of the life- style changes and coping skills were not always possible when there were flares in symptomol- ogy; such as healthy eating when there was nausea. Many participants shared that they found it helpful to not overdo things on a day with fewer symptoms so that they did not burn themselves out and were not able to function the next day. Although they shared that they experienced this as a struggle because they then had the ability to do what they needed to do, but suffered afterwards. This may reveal how participants’ learned about living with endome- triosis and tried to understand what would assist their bodies reaching a more homelike sense. Pain management was critical for partici- pants and they used various strategies including the use of a heat or ice pack, a tens machine and taking pain medication. Participants had tried various pain medications. For some participants they found that pain medication was no longer helpful. Other participants tried pain manage- ment programmes, applications and others included practices of yoga and deep breathing, and mindfulness based practices. Participants said that they found that the clothing that they wore could help them when they were experien- cing endometriosis symptoms, when it was gen- der affirming. We can view the various ways that participants attempted in their pain manage- ment as a means to find a more homelike sense with their bodies with endometriosis. Jru shared how he coped when he experi- enced symptoms, such as his Storms, I guess I have more like a depressive mind set creeping in and I kind of have to push myself to think this is just temporary. Life is moments in permanence, it’s not forever. That is something I hold dear to me cause it’s important to keep reminding myself of. From Jru’s quote we can perceive how he found it helpful to think about the pain and symptoms as not permanent and that they would shift. Jru’s quote may reveal how he tried to reach a more homelike state of living with endometriosis by trying to understand and cope with his symptoms. A few participants shared that they supported people with endometriosis which seemed to give them meaning. Much of this work was around creating awareness and advocating for gender diverse people with endometriosis. This work seemed to create meaning for them by sharing information, advocating for others and sharing their experience with others, which seemed to result in supporting them in a more homelike sense of living with endometriosis. We can view the various coping strategies and healthy behaviours that participants practiced as an attempt to feel more homelike in their bodies and within their gender identity whilst living with endometriosis. Eder and Roomaney 1619 Some participants described how they came to accept living with endometriosis. Remy shared, It felt very similar to the way of like figuring out my gender identity, it was kind of like, it was eerily similar where it is like, we’re okay you know I’m in slight pain but this is alright or I have like icky feelings in my stomach when someone refers to me as a woman but I’m like, I’m fine everyone feels a bit weird sometimes . . . and then it kind of evolving into the realisation, no you need to take care of yourself which was like the same realisation that I came to when I realised I was non-binary and when I finally accepted that yeh, you’re disabled sweets. From Remy’s quote we can perceive how they adjusted to living with endometriosis through a similar process of acceptance of their gender identity. Remy’s acceptance that they are disabled and need to take care of them- selves, seemed to help them reach a more homelike state with their body. Jru shared his feeling regarding acceptance of living with endometriosis as a transgender man, ‘ I think going forward for me, endo spe- cifically, is that I’m going to have to just really realise that my narrative is just a little bit dif- ferent, and that’ s okay and really just try and make the best of it ’. From Jru’s quote we can perceive how Jru’s acceptance that his narrative is different may aid him in living with endometriosis by moving from an unhomelikeness state to a more home- like state. From Remy and Jru’s quotes we can witness that although they both continue to struggle with endometriosis as gender diverse individuals, they have acceptance of living with this condition and have entered a more home- like state with their body.

From the findings shared with the use of Svenaeus’ theory, Phenomenology of Medicine, we explored how gender diverse people with endometriosis experience a sense of unhomeli- keness with their body, their gender identity and being-in-the-world. Unhomelikeness for gender diverse people with endometriosis has an addi- tional layer, as not only does endometriosis cre- ate a sense of unhomelikeness with the body and being-in-the-world, but in addition it may create a sense of unhomelikeness within one’s gender identity. The severity of endometriosis symptoms, experienced by our participants, cre- ated an unhomelikeness with their bodies. We can view this in relation to studies on cisgender women that describe how endometriosis symp- toms have an adverse impact on their lives (DiV asta et al., 2018; Hunsche et al., 2023; V an Niekerk et al., 2022). Not only do endometrio- sis symptoms create an unhomelikeness with the body, but in addition may also result in gen- der dysphoria, which may be interpreted as a further unhomelikeness for the gender diverse individual with endometriosis. Endometriosis is a gendered disease which has implications of exclusion (Jones, 2020) for the gender diverse individual and may result in gender dysphoria. The severity of endometriosis symptoms affected participants’ choices of gender affirm- ing gear, which negatively impacted on them and may have resulted with an unhomelike state with their bodies and being-in-the-world. Participants reported struggling with symp- toms for many years, with a median diagnostic delay of 12 years, without understanding the cause of the symptomology creating a feeling of incongruence with their understanding of their relationship with their bodies. Delays in diagnosis also resulted in minimal support and understanding of this disease, resulting in a sense of unhomelikeness. Diagnostic delays of endometriosis in cisgender women can average 7–9 years and have a negative impact on the life of the undiagnosed patient (Ghai et al., 2020; Swift et al., 2023; Tewhaiti-Smith et al., 2022). Cisgender women reported that diagno- sis helped them to create meaning of their ear- lier life experiences of endometriosis symptoms (Nielsen et al., 2023) and gave them a sense of 1620 Journal of Health Psychology 30(7) relief (Ellis et al., 2022). Svenaeus (2014) high- lighted the importance of understanding so that a person with an illness can move to a more homelike state. Participants reported relief with their diagnosis. Participants reported feelings of hopeless- ness in living with endometriosis as many experienced periods of time, and some were struggling at the time of the interviews, with healthcare treatment and a way forward. Without a way forward with living with endo- metriosis it may create a sense of unhomelike- ness. Cisgender women that experience endometriosis treatment that they experience as destructive, negatively affected how they felt about themselves and their bodies (Calvi et al., 2023; Grundstro¨m et al., 2018). Participants had an added layer of unhomelikeness to miti- gate as they received treatment that was not inclusive of their gender identity. This may reveal the critical nature of supportive health- care that has a focus on gender affirming care in the treatment of endometriosis. Homelikeness seemed possible with diagno- sis as it created an understanding for the partici- pant of the symptoms they were experiencing. Diagnosis and supportive treatment in cisgender women with endometriosis strengthened their health and wellbeing (Apers et al., 2018; Pettersson and Bertero¨, 2 02 0; Ro om an ey a nd Kagee, 2018). Treatment that is approached with expertise and a supportive HCP for cisgender women with endometriosis can have a positive impact (Pettersson and Bertero ¨, 2020). Some participants reported healthcare that was inclu- sive of addressing their endometriosis and their gender identity. Treatment for endometriosis that is gender affirming can bring about a homelike- ness between the illness, gender, the body and being-in-the-world. Participants applied a num- ber of coping strategies that assisted them in finding a more homelike state. Svenaeus (2014) described that a person can experience a sense of homelikeness with their body whilst living with an illness, under certain conditions. Homelikeness is dependent on the severity of the illness, and the reinterpretation of the sense of self with the illness (Svenaeus, 2014). Some participants reflected on how their coming to terms of living with this disease has been a pro- cess. From our findings we can see that gender diverse people with endometriosis may experi- ence additional barriers in reaching a sense of homelikeness with additional diagnostic delays, endometriosis symptoms that foster an unhome- likeness with the body as well as their gender identity which may result in gender dysphoria, and endometriosis treatment that is not gender inclusive. It is pertinent that gender diverse peo- ple with endometriosis receive healthcare that is inclusive of their gender identity and that is gen- der affirming. Gender diverse people with endo- metriosis may need additional supports as they may struggle with gender dysphoria. We recom- mend further research focusses on gender affirming endometriosis healthcare.

This study’s data set was small as it was a qua- litative study and included in-depth interviews. It may be useful to have country specific data, rather than data collected internationally due to country sociopolitical contextual differences. People without access to technology may have been excluded from taking part in this study as it was advertised and conducted online. Participation was limited to English-speakers only, which may have excluded interview candidates.

In this article we have discussed the lived expe- rience of transgender and non-binary people liv- ing with endometriosis in relation to Svenaeus (2014) who described an unhomelike and homelike state of being-in-the-world when liv- ing with an illness. This study revealed that transgender and non-binary people with endo- metriosis may experience endometriosis symp- toms that create an unhomelikeness with the Eder and Roomaney 1621 body and their gender identity. We recommend that further awareness is created regarding endometriosis and gender diverse people living with endometriosis, so that there are fewer diag- nostic delays and that endometriosis healthcare for gender diverse people is gender inclusive. Gender diverse people with endometriosis may benefit from additional support structures and this should be considered in their treatment.

We wish to acknowledge our participants’ invaluable time and their life stories they shared with us as part of this study. Data sharing statement The participants of this study did not give written consent for their original transcripts to be shared pub- licly due to the sensitive nature of the research sup- porting data is not available. Declaration of conflicting interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publi- cation of this article. Funding The authors received no financial support for the research, authorship, and/or publication of this article. Ethics approval This study was approved by the Health Research and Ethics (HREC) Committee at Stellenbosch University reference number: S21/07/118 (PhD) and project ID 22452. Informed consent All participants signed consent forms to volunteer in the study and to have the findings published. ORCID iDs Cheryl Joy Eder https://orcid.org/0000-0002- 7448-009X Rizwana Roomaney https://orcid.org/0000-0002- 3585-4992

Apers S, Dancet EAF, Aarts JWM, et al. (2018) The association between experiences with patient- centred care and health-related quality of life in women with endometriosis. Reproductive Biome- dicine Online 36(2): 197–205. Beischel WJ, Gauvin SEM and van Anders SM (2022) ‘ ‘A little shiny gender breakthrough’ ’: Community understandings of gender euphoria. International Journal of Transgender Health 23(3): 274–294. Calvi C, Sherman KA and Pham D (2023) Loneli- ness and perceived social support in endometrio- sis: The roles of body image disturbance and anticipated stigma. International Journal of Beha- vioral Medicine 31: 433–444. Chadha NA (2020) Viewpoint: If representations of endometriosis are not intersectional, they are damaging and inaccurate. In: Discover Society . Available at: https://archive.discoversociety.org/ 2020/06/03/viewpoint-if-representations-of-endome triosis-are-not-intersectional-they-are-damaging- and-inaccurate/ (accessed 1 June 2024). Chapron C, Santulli P and Cabri P (2015) The pain and daily consequences of living with endome- triosis: A qualitative online survey of women in China, France and Russia. Journal of Endometrio- sis and Pelvic Pain Disorders 7(3): 89–94. Chrisler JC, Gorman JA, Manion J, et al. (2016) Queer periods: Attitudes toward and experiences with menstruation in the masculine of centre and transgender community. Culture, Health & Sexu- ality 18(11): 1238–1250. Cole JM, Grogan S and Turley E (2021) ‘ ‘The most lonely condition I can imagine’ ’: Psychosocial impacts of endometriosis on women’s identity. Feminism and Psychology 31(2): 171–191. Denny E and Mann CH (2007) Endometriosis-asso- ciated dyspareunia: The impact on women’s lives. BMJ Sexual & Reproductive Health 33(3): 189–193. Diana P , Belluzzi B, Corona F, et al. (2024) Non- medical gender-affirming practices in transgen- der and gender diverse adolescents: A narrative review. Transgender Health . Epub ahead of print 22 March 2024. DOI: 10.1089/ trgh.2023.0194. DiV asta AD, Vitonis AF, Laufer MR, et al. (2018) Spectrum of symptoms in women diagnosed with endometriosis during adolescence vs adulthood. 1622 Journal of Health Psychology 30(7) American Journal of Obstetrics and Gynecology 218(3): 324.e1–324.e11. Ellis K, Munro D and Wood R (2022) The experi- ences of endometriosis patients with diagnosis and treatment in New Zealand. Frontiers in Glo- bal Women’ s Health 3: 991045. Fagervold B, Jenssen M, Hummelshoj L, et al. (2009) Life after a diagnosis with endometriosis - A 15 years follow-up study. Acta Obstetricia et Gynecologica Scandinavica 88: 914–919. Fourquet J, Gao X, Zavala D, et al. (2010) Patients’ report on how endometriosis affects health, work, and daily life. Fertility and Sterility 93(7): 2424–2428. Ghai V , Jan H, Shakir F, et al. (2020) Diagnostic delay for superficial and deep endometriosis in the United Kingdom. Journal of Obstetrics and Gynaecology 40(1): 83–89. Grundstro¨m H, Alehagen S, Kjølhede, et al. (2018) The double-edged experience of healthcare encounters among women with endometriosis: A qualitative study. Journal of Clinical Nursing 27(1–2): 205–211. Ha˚llstam A, Sta ˚lnacke BM, Svense ´n C, et al. (2018) Living with painful endometriosis – A struggle for coherence. A qualitative study. Sexual & Reproductive Healthcare 17: 97–102. Hunsche E, Gauthier M, Witherspoon B, et al. (2023) Endometriosis symptoms and their impacts on the daily lives of US women: Results from an inter- view study. International Journal of Women’ s Health 15: 893–904. Jones CE (2020) Queering gendered disabilities. Journal of Lesbian Studies 25(3): 195–211. Kuznetsov L, Dworzynski K, Davies M, et al. (2017) Diagnosis and management of endometriosis: Summary of NICE guidance. BMJ 358: j3935. Merriam-Webster (2024) Cisgender. In: Merriam- Webster.com dictionary. Available at: www.mer riam-webster.com/dictionary/cisgender (accessed 21 May 2024). National Health Service (2020) Gender dysphoria. Available at: https://www.nhs.uk/conditions/gender- dysphoria/ (accessed 1 June 2024). National Institute for Health and Care Excellence (2017) Endometriosis: Diagnosis and manage- ment [NICE Guideline No. 73]. Available at: https://www.nice.org.uk/guidance/ng73 (accessed 4 July 2024). Nielsen LJ, Poulsen K, Funch AL, et al. (2023) The lived experiences of endometriosis in adoles- cence-A critical hermeneutic perspective. Scan- dinavian Journal of Caring Sciences 37(4): 1038–1047. Okita F, Abrao M, Lara LAS, et al. (2021) Endome- triosis in transgender men – a systematic review with metanalysis. Journal of Minimally Invasive Gynecology 28(11): S103–S104. Patterson ME and Williams DR (2002) Collecting and Analyzing Qualitative Data: Hermeneutic Principles, Methods and Case Examples . Cham- paign, IL: Sagamore Publishing. Pettersson A and Bertero ¨ CM (2020) How women with endometriosis experience health care encoun- ters. Women’ s Health Reports 1(1): 529–542. Rea T, Giampaolino P , Simeone S, et al. (2020) Liv- ing with endometriosis: A phenomenological study. International Journal of Qualitative Stud- ies on Health and Well-Being 15(1): 1–9. Roomaney R and Kagee A (2018) Salient aspects of quality of life among women diagnosed with endometriosis: A qualitative study. Journal of Health Psychology 23(7): 905–916. Schwartz BI, Bear B, Short VL, et al. (2023) Out- comes of menstrual management use in transgen- der and gender-diverse adolescents. Obstetrics and Gynecology 141(4): 748–755. Svenaeus F (2000) The Hermeneutics of Medicine and the Phenomenology of Health: Steps Towards a Phi- losophy of Medical Practice. Dordrecht: Kluwer. Svenaeus F (2014). What is phenomenology of Med- icine? Embodiment, Illness and Being-in-the- world. In Health, illness and disease (pp. 97– 111). Routledge. Swift B, Taneri B, Becker CM, et al. (2024) Prevalence, diagnostic delay and economic burden of endome- triosis and its impact on quality of life: Results from an Eastern Mediterranean population. European Journal of Public Health34(2): 244–252. Tewhaiti-Smith J, Semprini A, Bush D, et al. (2022) An Aotearoa New Zealand survey of the impact and diagnostic delay for endometriosis and chronic pelvic pain. Scientific Reports 12(1): 4425. V an Niekerk L, Johnstone L and Matthewson M (2022) Health-related quality of life in endometriosis: The influence of endometriosis-related symptom pres- ence and distress. Journal of Health Psychology 27(14): 3121–3135. Eder and Roomaney 1623