Layers of isolation: Exploring the lack of social support among transgender and non-binary people with endometriosis

Background Endometriosis is a chronic, debilitating and isolative disease that has a negative effect on people’s quality of life. Little is known about the lived experience of psychosocial support for transgender and non-binary people with endometriosis. Aim The aim of this study was to explore the lived experience of psychosocial support, or the lack thereof, for eleven transgender and non-binary people with endometriosis.

We used Hermeneutic Analysis to analyze the data, from our sample of 11 participants, that we collected through three online interviews and one diary per participant. We used Phenomenology of Medicine as our theoretical point of departure.

We shared our findings under three themes of psychosocial support: (1) rejection of gender identity: left to manage endometriosis alone, (2) an isolating and alienating disease, and (3) The significance of support with gender identity and endometriosis. Participants described endometriosis as a lonely disease. Many of the participants reported feeling alone and isolated as transgender and non-binary individuals living with endometriosis. The few who reported receiving support, shared how these support structures aided them with their endometriosis and managing adversity and rejection regarding their gender identity.

We describe from our participants’ experiences how transgender and non-binary people with endometriosis may experience a layering of isolation due to experiences of rejection of their gender identity and needing to navigate an isolative disease. We recommend that transgender and non-binary people with endometriosis have their psychosocial needs assessed as part of their treatment as they may benefit from additional psychosocial supports that are gender inclusive.

Endometriosis is described as a multi-systemic disease with complex symptomology and pathobiology, where endometrium-like tissue grows outside of the uterus (Zondervan et al., Citation2020). It is described as a painful and chronic disease that has a devastating impact on patients’ quality of life (Roomaney & Kagee, Citation2018). People’s quality of life is negatively impacted by endometriosis, affecting their physical and psychological health, relationships, work, education and their fertility (Culley et al., Citation2013). It is estimated that endometriosis affects 10% of cisgender women (World Health Organization, 2023). Much of the research on endometriosis has focused on cisgender women, although some gender diverse people also live with this disease (Jones, Citation2021). In this article we reference transgender and non-binary people who are assigned female at birth (AFAB). There are few studies on transgender people with endometriosis (Ferrando et al., Citation2021; Okita et al., Citation2021, Jones, Citation2021; Shim et al., Citation2020; Vallée et al., Citation2023) and limited studies that explore the experience of transgender people living with this disease (Eder & Roomaney, Citation2024; Jeffrey et al., Citation2024). The prevalence of endometriosis diagnosed in transgender men is estimated at 25% (Okita et al., Citation2021). Transgender and non-binary people with endometriosis are known to experience discrimination of their gender identity in seeking healthcare for their endometriosis which results in them needing to manage feelings of being traumatized, self-doubt and gender dysphoria (Eder & Roomaney, Citation2024; Jeffrey et al., Citation2024). The use of gendered language in the discourses of endometriosis (i.e., women’s health) can result in exclusion for transgender people (Jones, Citation2021). The limited research on gender diverse people with endometriosis may mean that their voices are missing from endometriosis research (Chadha, Citation2020; Jones, Citation2021). There are no current studies that have reported on gender diverse people with endometriosis experience of psychosocial support. Psychosocial support is described as providing social and psychological resources to aid a person who may struggle with a problem, such as in the case of a person living with a chronic disease (Chan et al., Citation2009). Endometriosis can impact on a cisgender women’s interpersonal functioning and has been described as an isolative disease (Roomaney & Kagee, Citation2018). Endometriosis is known to negatively affect cisgender women’s quality of life, including social areas, such as intimate relationships, socializing and their work (Young et al., Citation2015). Psychosocial support has been shown to be valuable for patients with endometriosis (Culley et al., Citation2013), however social interactions have been shown to be negatively impacted by the physical and psychological symptoms of endometriosis (Olliges et al., Citation2021; Sullivan-Myers et al., Citation2021). Cisgender women reported to benefit from social support as it aided in their coping of living with this disease and the treatment thereof (Márki et al., Citation2022). Psychosocial factors are important to consider in the treatment of endometriosis as they may assist healthcare providers (HCPs) to better facilitate the lifetime management of endometriosis for patients (Young et al., Citation2017). There may be additional aspects to consider in the psychosocial support of gender diverse people with endometriosis. Transgender people may experience high rates of social isolation and loneliness (Hajek et al., Citation2023) and are at risk for social exclusion and discrimination in a number of social contexts (Stewart et al., Citation2018). This experience of loneliness and social isolation is highly correlated with poor health related factors, such as with chronic diseases (Hajek et al., Citation2023). Living with a chronic illness, such as endometriosis, that is known for being an isolating disease (Roomaney & Kagee, Citation2018), may compound gender diverse people’s experience of isolation (Jeffrey et al., Citation2024). Social support for transgender people, such as from family, friends, partners and the community can act as a critical and protective factor in amending the detrimental effects of discrimination and may support in wellbeing (Lewis et al., Citation2021; Snapp et al., Citation2015). It may therefore be important to explore psychosocial support that transgender and non-binary people with endometriosis experience because of the possible loneliness and social isolation they may experience with both their endometriosis and their gender identity. It may in addition highlight the beneficial experience that psychosocial support can contribute to their lives. We used Phenomenology of Medicine (Svenaeus, Citation2013) as our theoretical point of departure. Svenaeus (Citation2013) argued that our lived experience is embodied and that our bodies are our means to find meaning and “being-in-the-world.” “Being-in-the-world” means that we are our world rather than just merely beings that are living in the world (Heidegger, Citation1962). Svenaeus (Citation2013) described that when our bodies are unwell, we can feel a sense of “unhomelikeness” within our bodies and within ourselves with an illness and “being-in-the-world.” This “unhomelikeness” may result in a sense of feeling alien from the world and our bodies, isolation from others and a loss of a sense of meaning (Svenaeus, Citation2013). Pain, such as that with endometriosis, may alienate us from the world and may make the world difficult to live in Svenaeus (Citation2015). Isolation is enforced as chronic pain impacts our quality of life (Svenaeus, Citation2015). People afflicted with illness can return to a sense of “homelikeness” when they are able to adjust their sense of meaning around the illness, adapt their environments and access support, such as with medical professionals and other support structures (Svenaeus, Citation2013). From this we interpret that support is critical for people with chronic illnesses. Central to this theory is “unhomelikeness” with illness, but “unhomelikeness” can also occur in significant adverse life experiences (Svenaeus, Citation2013). We use this theory to interpret participants’ experiences of “unhomelikeness” due to significant life experiences of rejection of their gender identity and “unhomelikeness” as a result of the alienation from the world from living with endometriosis. We therefore argue that rejection based on gender identity can result in a sense of “unhomelikeness” of being-in-the-world as people need to find meaning from their experience of rejection from their support structures and who they are in the world. Further to this, a gender diverse person with endometriosis may experience a sense of ‘unhomlikeness” as endometriosis can trigger gender dysphoria (Eder & Roomaney, Citation2024). Therefore, living with endometriosis may add an additional layer of isolation, alienation and a sense of “unhomelikeness” for the transgender and/or non-binary person as they manage living with this isolating disease. Aim Our aim in this article is to explore transgender and non-binary people with endometriosis experience of psychosocial support.

Authors positionality This research is part of a PhD in Psychology study. The first author is a cis white woman who is completing her PhD. She has endometriosis and became interested in this topic when she learnt that transgender people’s voices were not included in endometriosis discourse. She wanted to advocate for their voices to be heard and included. The second author is the first author’s supervisor and identifies as a cis woman. Type of study This study was a qualitative subgroup analysis of the lived experience of transgender and/or non-binary people with endometriosis in which we applied a hermeneutic phenomenological approach. This article forms part of a broader study consisting of four objectives exploring the following among participants: first their day-to-day experience of living with this disease, second their experiences of healthcare, third their experiences of psychosocial support and fourth their experiences of integration into the endometriosis community. In the current article we focused on the third objective of the broader study. Participants We used purposeful and snowball sampling to recruit participants through social media via endometriosis and gender diverse support groups. The inclusion criteria requested that volunteers for the study needed to (1) be transgender and/or non-binary, (2) have been diagnosed or have suspected endometriosis, and (3) be eighteen years old or older. Participants were also required to be able to speak English. Twenty-six individuals showed interest in the study and eleven formally participated. Participants were gifted a small gratuity of a $10 Amazon card for their time. Data collection We collected data through three online semi-structured interviews per participant over Skype or Zoom of approximately 45–60 min each. Participants consented to the interviews being recorded and they chose whether they wanted to have the camera setting on. Participants were interviewed over a period of three months. They chose the dates and times within this three month period that were suitable to them. Participants also completed a diary for three months in which they reported on their day-to-day experience of living with endometriosis. The purpose of having three interviews and a diary was to enable more in-depth discussion with regards to these four areas of the broader study. Ethical considerations This study was reviewed by the Health Research and Ethics Committee at Stellenbosch University. Participants fully consented to being part of the study. Pseudonyms were used in the write up of this study. We made provision for a counseling session for participants due to the sensitive nature of the study. Data analysis We used Hermeneutic analysis, following a seven step process recommended by Patterson and Williams (Citation2002). Hermeneutic analysis involves the interpretation of lived experience of individual/s from within the context that creates this experience, and it is considered a reflective, thoughtful and methodological analytic approach (Bynum & Varpio, Citation2018). In the first step of Patterson and Williams (Citation2002) analytic process, the first author transcribed the recorded interviews and she reflected on her experience of the interviews and her reading of the diaries. Second, the first author created a referencing system by numbering the lines of the transcribed interviews and the diaries, which she then loaded onto Atlas ti. Third, both authors were reflexive by reading and rereading the data. We kept notes of these reflections in a journal. Fourth, we found meaning units which consisted of highlighting parts of text within the data and coded these. We then reflected on these meaning units and from these reflections on shared experiences of participants we developed themes in step five. Both authors read and re-read the text and discussed the meaning units and themes throughout the analysis process. In the sixth step, we examined interconnections between the themes. Finally, we wrote up the findings referring to the themes, the interconnections that we found, our reflections on endometriosis and the theory of Svenaeus (Citation2013) Phenomenology of Medicine. We discussed discrepancies in relation to our perceptions and reflected on these which aided further in the meaning and interpretation of the data. We applied the hermeneutic circle throughout this process by returning to the original data, reflection on theory, use of reflexivity, and reflective discussions between the two authors. The hermeneutic circle involves a non-linear, circular analytic process in which the researcher develops their own understanding from their context and their life world to that of the phenomenon they are observing (Heidegger, Citation1962). The researcher moves between these positions to explore the lived experience of the phenomena being studied (Heidegger, Citation1962). Findings We discuss participants’ experience of psychosocial support under the following themes: (1) Rejection of Gender Identity: Left to Manage Endometriosis Alone, (2) An Isolating and Alienating Disease, and (3) The Significance of Support with Gender Identity and Endometriosis. Participants described endometriosis as a lonely disease. Many of the participants reported varying extents of feeling alone, isolated and alienated as gender diverse individuals living with endometriosis. Participant demographics Participants who volunteered for this study resided in Canada, Norway, Australia, United States of America, England, New Zealand and Ireland. Seven participants were non-binary, two participants were transmasculine and two participants were transmasculine and non-binary. The average age of participants was 26 years old, with the youngest participant being 21 years old and the eldest being 31 years of age. We collected population group demographics and one participant shared that they were Norwegian, one identified as British, one participant identified as mixed race and Asian, six participants identified as white, another participant identified as Caucasian and Jewish and one person shared they identified as Ashkenazi Jewish. With regards to employment, three participants were unemployed, two participants worked part-time, two were self-employed, and four worked full-time. Three participants needed to move in with their parents and one needed to board in a low income community organization house. The majority of participants reported ongoing struggles with their socioeconomic status and they were reliant on government medical healthcare systems with long waiting lists. Rejection of gender identity: left to manage endometriosis alone Under this theme we explore participants’ experiences of rejection of their gender identity. We explore these rejection experiences in relation to the impact they may have had on participants’ experiences of support with their endometriosis. Participants were left isolated because of the rejection of their gender identity by their support structures. This seemed to leave participants to manage feelings of rejection and then need to manage their endometriosis alone. Participants reported experiences in which their families were not supportive of their gender identity, which had a significantly negative impact on their sense of self and their social experiences, leaving them with feelings of rejection, abandonment and isolation. Ez, a 30 year old, transmasculine non-binary person from Canada, shared how coming out to their parents regarding their gender identity resulted in their alienation from their father. Ez shared, Basically cause I said I am trans to my parents, my dad basically went to war with me. So I had to deal with endometriosis on top of my father basically threatening me constantly. Ez’s experience of “being-in-the-world” was that they were not accepted for who they were and this left them isolated, which resulted in them having to manage their endometriosis alone. Their experience is one of rejection. Ez used words such as ‘war’ and ‘threatening’ which reveal a hostile environment, and Ez therefore had multiple stressors to mitigate while managing their endometriosis. Ez further explained the impact of disclosing their gender identity, It’s pretty weird how quickly people can flip when you go from my name is … and … to using a deeper voice and saying I’m non-binary or transmasculine. I knew I would lose people but I was not really prepared to lose my entire extended family. Ez was entirely isolated from their family when they shared their gender identity. This rejection left Ez without a support structure and may have resulted in them feeling a sense of “unhomelikeness” regarding their gender identity and “being-in-the-world” as their family was at ‘war’ with them because of their gender identity. This meant that Ez was left to manage their endometriosis without their family’s support. Sawyer, a 31 year old non-binary person from Australia, shared how their family was not supportive of their gender identity. They said, My Dad made a lot of comments to me when I was a kid, like he knew. And that made it very clear to me that I didn’t have a home to live in if I was gay or whatever. Sawyer shared that their father had made negative comments regarding LGBTIQA people in general before disclosing their gender identity, which evoked feelings of rejection. This experience of rejection may have contributed to a sense of “unhomelikeness” in relation to their body and “being-in-the-world”. When we asked further about Sawyer’s experience of support with their endometriosis they shared, I don’t have family support me on anything because of abusive homophobia, transphobia and that sort of thing in my family, my birth family. So yeh, I didn’t really have anyone to talk to about that stuff (referring to endometriosis) in that regard. From Sawyer’s quote we may observe how they did not have support for their endometriosis because of their family’s discrimination, which has left them isolated. Sawyer used the words ‘abusive homophobia, transphobia’ which reveals the hatred they experienced, which left them with feelings of rejection and without their family to support them with their endometriosis. From Ez and Sawyer’s quotes we can perceive how their families’ rejection of their gender identity left them without support to manage their endometriosis. Jru, a 29 year old transmasculine individual from the USA, shared in his diary his experience of how thanksgiving was a challenging time for him due to layers of managing endometriosis, Premenstrual Dysphoric Disorder (PMDD) and a lack of support from his father regarding his gender identity, Every year around this time, I grieve incredibly much because I am reminded of the INTENSE turmoil, pain, and agony that Endometriosis and PMDD had on my body. The suicidal ideation thoughts were non-stop and the entire time, I was alone at home or my dad told me it’s my fault as I “decided to be a boy.” I was incredibly close to taking my life and so every year, I grieve for the fact that my neurons went through something incredibly traumatic mainly due to Endo and PMDD. From Jru’s reflection in his diary, we can perceive the impact Jru experienced on his mental health as he tried to manage endometriosis and PMDD on his own, when his father negated and blamed Jru for his gender identity. Jru was left to manage his feelings and his symptoms on his own, while managing the negating of his gender identity from his father, which resulted in thoughts of suicide. Thanksgiving represented traumatic memories for Jru and an intense experience of “unhomelikeness” of “being-in-the-world” as he was rejected and blamed by his father for his gender identity and needing to manage his endometriosis symptoms. Endometriosis symptoms for transgender and non-binary people may trigger gender dysphoria which may be experienced as an “unhomelikeness” with the body, self and “being-in-the-world” (Eder & Roomaney, Citation2024). We may therefore interpret that Jru’s endometriosis symptoms may have triggered a further alienation and “unhomelikeness” with his body while he was left unsupported in his gender identity. With regards to support at work, participants shared the negative impact that invalidation of their gender identity at work had on them. We perceived how this was upsetting and was a major stressor to them. Sage, a 21 year old transgender male from England opened up about his experiences with colleagues, They didn’t understand dynamic disabilities or endometriosis or chronic illnesses, anything like that. So they kind of told me just man up about it and because I couldn’t they deemed that I wasn’t masculine enough to be a man. I was too sensitive. I was just too weak to be classed as a man and they all knew that I was a transgender man… It left me very frustrated because firstly you’re just invalidating my gender because I am trying so hard. I was doing my best to go into work even if I was so fatigued or I was in so much pain. From Sage’s quote we can observe how Sage was struggling with endometriosis symptoms and he was expected to perform his work duties with little understanding. While Sage was trying to manage his endometriosis symptoms his gender identity was invalidated when he was told to ‘man up’. Sage’s accounts revealed a workplace that seemed to have no understanding of disability, chronic illness or gender identity. Sage was left frustrated as he was trying so hard to work despite his endometriosis symptoms. Sage needed to leave this job because of his endometriosis and had to change his work due to the disability symptomology had caused. Sage encountered a sense of “unhomelikeness” with his endometriosis and his gender identity as he tried to perform how he used to in relation to his work and “being-in-the-world”. From this experience we can see how both Sage’s endometriosis symptoms and his gender identity were invalidated at his work, which may reveal a double layering of being left unsupported. In relation to support from friends regarding gender identity, we perceived that participants found it hurtful when friends shared misinformation about endometriosis that discriminated against gender diverse people. Jo (25-year-old, non-binary, Ireland) shared, My friend did an interview on Instagram with an artist who is doing a series on “female” issues. She talked about endo and even stated it is a female only disease. This made me so angry. Jo’s quote may reveal how they were hurt and angered when their friend shared misinformation about endometriosis only being a cis women’s disease. Much of the language of endometriosis describes it as a women’s disease. Jo may have experienced this as an erasure of their gender identity and a feeling of not belonging to the endometriosis community, without a place to belong in the world, and a discord between their gender identity and their “being-in-the-world”. Jo may have experienced feelings of anger, erasure and isolation while they were looking for support with their endometriosis. Participants shared their experience with limited support groups that were available for gender diverse people with endometriosis. Groups were unhelpful when members of the groups discriminated against gender diverse members and the facilitators did not actively address the discrimination. Jo further shared their experience of endometriosis being a lonely disease because of a lack of support groups, Endometriosis is very much a lonely illness, because there’s not many support groups for it. So I was just thinking how it is a lonely illness, and then I think like being non-binary or like transgender, I think that it makes it even more isolating because then the groups that are out there, a lot of language around endo as well is very much like female orientated. From Jo’s quote we can perceive how they experienced endometriosis as a lonely disease and how the limited supports that are available further isolated them as they were not gender inclusive. The lack of gender inclusivity and the gendered language that was used within endometriosis support groups adds a further layer to Jo’s experience of endometriosis being a lonely disease. The lack of gender inclusivity in these groups may communicate that endometriosis is a women’s disease and that gender diverse people do not belong to the endometriosis community. This experience of not belonging may create a fracture in Jo and others’ sense of “homelikeness” as their experience of “being-in-the-world” is one of rejection and exclusion based on their gender identity and not belonging to the endometriosis community. Participants discussed the limit of support for people with endometriosis who identify as transgender and or non-binary. Ez shared, What is the correlation or support I get for being non-binary or trans and having endo? None, none… So basically I get support from the queer community but I don’t necessarily get support for being queer and having endo. From Ez’s quote we can see how they experienced support from the queer community but this is not focused on their endometriosis. There seems to be a lack of support for gender diverse people with endometriosis, as indicated by the limited availability of support groups or structures. This gap in support may result in transgender and non-binary people with endometriosis feeling isolated as there is little to no support or inclusivity thereby revealing a world in which one may experience they do not belong. This rupture in support for endometriosis and negation of gender identity may create an “unhomelikeness” of “being-in-the-world”. An isolating and alienating disease Under this theme we explore participants’ experiences of endometriosis being an isolating disease resulting at times with a sense of “unhomelikeness” within their body, their sense of self and being-in-the-world. Participants shared experiences in which their endometriosis isolated and alienated them from their support structures. Jru shared how his father rejected him because of his endometriosis, “Now my Dad is like, ‘You are disabled (referring to his endometriosis), you are worthless to me, you are invisible’.” Jru shared his experience of feeling rejected by his father when he voiced a need for accommodation and financial support. Jru was rejected by his father because the disabling symptoms of endometriosis left Jru with a loss of his sense of homelikeness of being-in-the-world as he is devalued because of his disability. From Jru’s quotes we witness a layering of rejection from his father, as Jru is rejected in his gender identity (as described in the first theme) and with his endometriosis. From participants’ reports, some felt isolated when their family did not try to understand endometriosis. Ez shared, At a time I needed support the most when I first needed surgery my family was just like, ‘Okay you’re sick get it done, get better’. You know, ‘Come back when you are okay.’… It was very rough. Ez was left to their own devices in terms of managing their endometriosis treatment and felt that their family did not understand that, “this is a lifelong issue, this isn’t like a one in done thing”. Ez needed support from their family but their experience of being-in-the-world seems to be one of isolation. Under the first theme we had shared how Ez was rejected because of their gender identity, therefore we can observe a multi-layering of isolation and rejection as Ez needs to manage their endometriosis alone while also being negated in their gender identity. Several participants shared that they found from their previous experience, that relationships with significant partners could be unsupportive. Sawyer shared, “My ex-husband wasn’t super supportive to be honest he always acted quite annoyed with me for like when I was in so much pain and needed to go to the hospital.” From Sawyer’s experience it seemed that when Sawyer needed support they were treated as if they were an inconvenience by their husband and this may have meant that their experience of “being-in-the-world” was that they were alone. Participants also shared their painful experience with sex as a result of endometriosis, and how this negatively impacted on the relationship with their significant partner. They reported experiences in which previous partners did not show understanding for their experience of pain with sex. A participant shared, “People I’ve been dating, they’d be like, “Oh, have you pain?,” “Yes,” and, “I know you have pain during sex but let’s still do it anyway cause I want to.’” Some participants reported that they avoided relationships because of this reason. Onyx, a 21 year old, non-binary individual living in New Zealand, shared how a relationship can be an additional stressor when living with endometriosis, “It (a significant relationship) feels like it is just another thing to push through and be responsible for.” Participants’ experiences of significant relationships that were unsupportive reveal an isolative experience. Participants did not report that their partners were unsupportive of their gender identity, however some participants revealed that having a relationship was an additional stressor to navigate and that they chose to not be in a relationship due to their endometriosis. This may have left them without support from a possible significant partner that other participants reported a benefit from. The toll of endometriosis on participants’ quality of life and past negative experiences seemed to remove the option of exploring a significant partner as support for participants’ gender identity and their endometriosis. Several participants reported that workplaces were overly stressful when there was no support with their endometriosis and resulted in them leaving their jobs. Participants expressed a lack of support in their work environments when their employers minimized their pain and symptoms, questioned their need for mobility aids and supports, and did not provide time off on days that participants felt unwell or needed to attend medical appointments. Ez shared their experience of their employer not understanding their medical condition with endometriosis which resulted in them resigning, It’s usually not socially acceptable to talk about endometriosis or your uterus, like some people even consider it sexual harassment or being rude. It’s not, I wasn’t using any sort of derogatory or any kind of rude words talking about it. But the employer I have told, have not been super … the XXX I worked for was not understanding. I had surgery, and they were pretty rude about it actually, they were like, you’re going to get fired if you can’t do your job. And it’s like, I can do my job I just need help for a couple of weeks. From Ez’s quote we can perceive how they felt unsupported by their employer as the employer did not understand endometriosis and how Ez needed support while they recovered from their surgery. This lack of support resulted in Ez feeling alienated at work and resigning. Ez’s experience of “being-in-the-world” is one in which they could not openly express their needs without being rejected for a request of support managing a chronic illness. A lack of support at work with endometriosis may have far reaching effects as it is another experience of being left alone when participants had already shared being isolated from their support structures, such as the rejection Ez experienced in relation to their gender identity. Participants reported that not working or working limited hours held additional stressors for them as it impacted on their socioeconomic status. Onyx shared, “I needed to be on a disability benefit for a while because I wasn’t able to work but the amount that they gave me was so little that I couldn’t support myself on it.” Onyx found that they couldn’t afford to be on a disability benefit which resulted in them needing to work. Four participants shared that they had to move in with their parents as they couldn’t afford not working or working limited hours because of their endometriosis. Financial difficulties impacted on participants’ access to healthcare as they were on long governmental healthcare waiting lists. Crow, a 31 year old non-binary individual from Canada, shared not being able to see a gynecologist for six years because they couldn’t afford it. Daniel, a 21-year-old, transmasculine and non-binary individual from Norway, shared that due to finances he only had access to government services in which there are limited specialists in Norway, “We have one specialist in one hospital in the whole country.” Jo shared a layering of needing to manage finances for both gender transition medical treatments and for their endometriosis care and how this impacted on their access to support, “People who are trans and who are transitioning, um they might already be pumping a lot of money into bills for transitioning already and for their treatments and that. I even know for myself, endometriosis is also not a cheap.” One participant shared how their car had broken down and they couldn’t get the medication they needed for their endometriosis. The lack of financial resources also affected participants’ access to further supports such as Psychology. Many participants’ shared their experience of “being-in-the-world” as one of financial stress and feeling like a burden which resulted in difficult feelings around finances, and their role in the family as some were unable to contribute and were reliant on family or a government benefit. Difficulties with finances limited participants’ access to support with their endometriosis and with their gender identity, leaving them further isolated and with a sense of “unhomlikeness”. Participants revealed how they had to limit their activities due to endometriosis symptoms and this resulted in them not being able to go out with friends or engage in activities that they used to enjoy with friends. Daniel shared, I used to love sleeping outdoors and now I can’t even go for a walk in the winter or… anything. It’s like I’m isolated from everything I loved. From Daniel’s quote we can view that Daniel was left isolated because of not being able to engage in activities he used to be able to enjoy with others. This represents a major loss for Daniel and a way to connect with others. We can deduce that because endometriosis limits activities, participants are left feeling isolated and that endometriosis can be an alienating disease. Research has shown that support plays a vital role in the support of gender diverse people and is a protective factor from experiences with discrimination (Lewis et al., Citation2021; Snapp et al., Citation2015). The limit of activities isolated participants further from support they could receive in relation to their endometriosis and support with their gender identity, and from sharing their experience of “being-in-the-world.” A participant reported experiences of isolation from their community as they reflected in their diary about their endometriosis and being gender diverse, I lost a baby, I lost a community and now I may lose my life because of it. Because no matter what I did, I was never going to be good enough to the Jewish community. I don’t need the world’s acceptance. I only need my own, but that doesn’t mean I don’t need basic compassion from medical providers and especially those within my ethnic group. This participant experienced a deep sense of isolation as they shared an experience of rejection from their community because of their endometriosis, their experience of miscarriage and because of their gender identity. Although this participant reflected that they accept themselves, they highlighted the impact of a lack of acceptance for their endometriosis and their gender identity from their community and others had on them, and called out their need for compassion and support. The significance of support with gender identity and endometriosis Under this theme we explored how support may foster a sense of “homelikeness” of living with endometriosis as an individual who identifies as transgender and/or non-binary and “being-in-the-world”. We reflected on the significant impact that the experiences of support for participants’ gender identity and their endometriosis had on them. Some participants shared how some of their family members were supportive with their endometriosis and their gender identity. Jo shared, “the main people who have kind of showed a lot of support would be my boyfriend and my parents, because they would be very involved with like bringing me to the hospital, checking in with me, asking me about doctors’ appointments and like how they’ve gone.” They shared how support had a positive impact on their wellbeing while managing endometriosis symptoms. Support from family also aided participants in managing negative experiences in relating with the world regarding their gender identity, such as with the medical community, the media or/and with people online social media platforms. From these experiences we inferred how a combination of family support in relation to gender identity and endometriosis had a positive impact and provided a sense of “homelikeness” of “being-in-the-world”. Some participants, who were in intimate relationships, shared that they found their partners supportive. Partners were supportive when they reflected understanding, assisted participants with healthcare, took them to appointments, looked after them after surgery, provided financial support, helped with or did most of the household chores, adapted activities if it was a bad day with symptoms, and were understanding in difficulties and pain with sex. Crow shared their experience of partner support for their endometriosis, My husband, of course, completely respects and supports my gender and everything and recognizes that I am somebody who has a uterus but that doesn’t make me a woman… and that I am going through absolute medical hell trying to just wake up every day. From Crow’s quote we can see how they valued the experience they had in a partner who validated and respected their gender identity and understood how endometriosis negatively affected their quality of life. Sage shared how his significant partner supported him when he experienced transphobia online an endometriosis social media support platform, I’m not sure but my partner was there to support me. We video call every night. So he was very sweet, just kind of reassured me. He reminds me if anything bad happened to trans people he would be there to support me and protect me, which is very sweet. From the above quote we can see how Sage’s partner provided Sage with support by hearing and reassuring him when he experienced transphobia. Sage seemed to find the support from his partner helpful and reassuring. Sage was very distressed and felt unsafe when he experienced hate online on an endometriosis support platform when he was looking for support, however the support he received from his partner was helpful in that it communicated to him that he is not alone and that he would be protected. However the additional experience of hate online is a further experience of isolation in relation to “being-in-the-world”. Participants shared that work environments were supportive when they were gender inclusive and demonstrated understanding regarding their endometriosis. Sawyer shared how they found a previous work environment supportive, Just the fact that I felt so safe to be out as trans and out as someone with a debilitating, you know disease, like really nice [referring to new job]. And so like they were always checking in with me and always making sure that I wasn’t taking on too much work. Sawyer revealed the positive impact of a supportive work environment when they felt safe to disclose their gender identity and their endometriosis condition to their employer. This experience of support resulted in a sense of “homelikeness” of “being-in-the-world” for Sawyer. Some participants shared how they changed their work so that their work environments were more supportive of their endometriosis. Supportive work environments also provided accommodations, such as being able to work from home when needed. Sage, a 21 year old transmasculine teacher shared how he changed his work to online teaching due to his endometriosis symptoms. He reflected in his diary, My period is on its way… Thankfully, my students only see my head and shoulders so down below I had sweatpants and my heat pack on my belly. The English lesson with my new student went brilliantly!! He also wants multiple lessons per week and is SO lovely - he calls me ‘Sir’ and ‘Mister …’ which gives me a little boost of gender euphoria. Sage shared the benefit he experienced in how his work was able to make accommodations for his endometriosis symptoms by allowing him to work online. He shared his positive experience in being able to manage his endometriosis symptoms and being validated in his gender identity at work. We theorize that the accommodations at work allowed Sage to be able to apply coping strategies to manage his endometriosis pain, which furthermore allowed him to perform optimally. Sage also received positive feedback from his student regarding his work, as well as the positive experience of being validated in his gender. A supportive work environment that is inclusive of those with a disability and identify as transgender and/or non-binary may help to have a more “homelike” sense of “being-in-the-world.” Participants shared how they appreciated when friends reached out to them, offered them emotional support, listened to them, adjusted their plans when they had experienced a flare in symptoms, and had supported them in trying to understand more about endometriosis and gender diverse people’s experience of endometriosis. Friends were also supportive in taking participants to their medical appointments, assisted them in debriefing from the medical appointments in which they may have been misgendered or had their experiences invalidated. Participants shared how they found it helpful when friends learned about endometriosis and had researched the disease. Participants shared how they found support in friends with shared experience, such as other friends with endometriosis, chronic illnesses and from the gender diverse or LGBTIQA+ communities. Remy, a 27-year-old non-binary person from Canada, shared their experience of relating to friends with shared experience, I at one point came up with this really good phrase where it …oh… the hardship differentiations, so people who go through hardship tend to understand and empathize better when somebody else is going through a hardship than those who have been living that kind of idyllic life. Remy found they could relate more with friends who had also gone through life struggles, which they called, ‘the hardship differentiations’. Remy found meaning in their relationships with others that they could relate to and this provided a sense of “homelikeness” with living with endometriosis as they did not feel alienated. We also argue how shared experience can be beneficial for gender diverse people with endometriosis as some participants shared how they have tried to connect to other gender diverse people with endometriosis, which has aided them in feeling less alone and more “homelike”. Participants made use of other support structures such as counselors or psychologists, community support workers, health advocates, pets, online short courses on managing pain, physiotherapists, pelvic floor therapists and support groups for endometriosis or pain management. Participants shared that they found appointments with a psychologist helpful in that they validated participants’ experiences and they were able to explain the effect endometriosis had on their mental health. Psychologists were supportive when they were gender affirming and provided tools to assist in the management of endometriosis symptoms, how to manage difficult medical appointments and medical trauma. Many of the participants could not access psychological support structures due to limited finances and a lack of services with long waiting lists. Support groups were helpful when they provided a space for shared experience. We perceived the positive impact that support structures had when they were gender inclusive. These support structures provided experiences for participants in which they felt less alien and had a sense of “homelikeness” with their bodies, their selves and “being-in-the-world.”

Our findings revealed differing experiences of psychosocial support for transgender and non-binary people living with endometriosis. Participants who had experience of rejection of their gender identity left them feeling isolated, alienated and with difficult feelings to manage while managing endometriosis. These experiences of rejection of gender identity also meant that participants were left without these supports. In addition, the experience of endometriosis was isolating. The findings echo those in several studies that explored support among cisgender women with endometriosis in which endometriosis had an isolating effect (Cole et al., Citation2021; Facchin et al., Citation2018; Grogan et al., Citation2018; Roomaney & Kagee, Citation2018; Wren & Mercer, Citation2022; Young et al., Citation2015) It is clear that rejection based on gender identity played a large role in the experience of a lack of support among transgender and non-binary people with endometriosis. In general, participants who were supported by their family, partners, colleagues and friends in their gender identity also received support in terms of their endometriosis. Participants, who were rejected by others for their gender identity, struggled to obtain support and this left them isolated. We can locate these findings in relation to Svenaues’ Phenomenology of Medicine (2013, 2015) as a dual alienation and “unhomelikeness” that may occur as a result of the significantly isolating life experiences of rejection of gender identity and from living with the painful and chronic, isolating disease of endometriosis. We will now discuss the three themes referring to Phenomenology of Medicine. With the theme, Rejection of Gender Identity: Left to Manage Endometriosis Alone, we explored participants’ experiences of being rejected because of their gender identity. Participants experienced rejection of their gender identity from their families, work colleagues and friendships. They also shared that there was a lack of support groups that were gender inclusive for endometriosis. These experiences left participants alienated and rejected from their support structures. “Unhomelikeness” can occur, not only with illness but in circumstances in which we experience suffering, harsh conditions or existential crises (Svenaeus, Citation2013). We perceive how participants’ experience of rejection from their support structures because of their gender identity may have resulted in an “unhomelike” state of “being-in-the-world” and leaving them feeling alienated. Higher levels of loneliness have been found in LGBTI people than in the general population (Hughes, Citation2018). Rejection of gender identity may result in gender diverse people being isolated and alienated from society (Stewart et al., Citation2018). Transgender and gender diverse people were shown to be at high risk of social isolation (Hajek et al., Citation2023) and at greater risk for problems with anxiety and depression when they had a chronic illness (Hajek et al., Citation2023). Under the theme An Isolating and Alienating Disease, we shared participants’ experiences of how endometriosis alienated them from their support systems of family, work, significant partner relationships and friendships. Phenomenology of Medicine highlights how a chronic pain condition may rob our lives, leaving us poor, alone and with a sense of “unhomelikeness” (Svenaeus, Citation2015). From our findings we view endometriosis as an alienating disease. Other findings on endometriosis with cisgender women support this finding (Cole et al., Citation2021; Facchin et al., Citation2018; Young et al., Citation2015). Cisgender women reported experiences of feeling isolated with living with endometriosis when they felt they’re experiences were not understood (Facchin et al., Citation2018; Grogan et al., Citation2018; Roomaney & Kagee, Citation2018). From our findings, participants shared the negative impact it had on them when there was a lack of understanding and support from their support systems. This left them with feelings of being isolated and a sense of “unhomelikeness” of “being-in-the-world” as they needed to manage their endometriosis alone. We shared the positive impact that participants experienced when they felt supported regarding their gender identity and with their endometriosis by their support structures under the theme, the Significance of Support with Gender Identity and Endometriosis. We argue that support is critical as a social factor that may aid in developing a more “homelike” state of living with a chronic disease (Svenaeus, Citation2013). Gender diverse people have reported that support received from their family, friends, employers and HCPs with their gender identity has impacted positively on their wellbeing and has helped them in managing adverse experiences (Stewart et al., Citation2018). Previous studies on endometriosis with cisgender women have revealed social support by family and peers has been shown to play a critical role in the support of cisgender women with endometriosis (Roomaney & Kagee, Citation2018; Wren & Mercer, Citation2022). Our participants benefited from both the support with their endometriosis and with their gender identity. We therefore recommend that it is crucial to explore the support structures that gender diverse people with endometriosis have in the treatment of endometriosis, due to the layering of possible isolation as a result of rejection of gender identity and the alienation from support systems from living with the isolative disease of endometriosis.

It is important to note several limitations of this study. Participants were recruited internationally, which meant that this study didn’t focus on specific socio-political and cultural factors that may impact on gender diverse people with endometriosis experience of psychosocial supports. We conducted this study online which then excluded possible participants who may not have had access to technological resources. For future research it may be helpful to include psychosocial support voices that may provide an understanding to the barriers experienced in providing support to gender diverse people with endometriosis.

We found a layering of isolation that transgender and non-binary people with endometriosis experience. Participants reported feeling isolated due to experiences of rejection of their gender identity. This may leave gender diverse individuals alone to manage a debilitative, chronic and isolative disease. We therefore recommend HCPs consider gender diverse people with endometriosis support structures in their treatment and that transgender and non-binary people with endometriosis are referred for additional psychological support. There also is a need for more endometriosis support groups. These support groups should be nondiscriminatory against gender diverse people and support group facilitators may benefit from LGBTIQA+ sensitivity training to facilitate a gender inclusive group.

We wish to acknowledge our participants’ invaluable time and their life stories they shared with us as part of this study. Disclosure statement No potential conflict of interest was reported by the authors. Additional information Funding

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