Transgender and non-binary people with endometriosis use of healing strategies

Objective: We explored the perspectives of transgender and non-binary people with endometriosis lived experiences of utilizing Leder’s Chessboard of Healing Strategies and the intersection with their gender identity. Leder’s Chessboard of Healing Strategies consists of twenty strategies in which a person with an illness with multiple experiences of fragmentation can reintegrate their life. Endometriosis is known to have negative sequelae on the quality of life of people with endometriosis. Transgender and non-binary people with endometriosis have additional factors to navigate in relation to their gender identity and their endometriosis compared to cisgender women endometriosis patients. We explored the utilization of coping strategies to understand the multifaceted ways that transgender and non-binary people navigate endometriosis and to identify where they may benefit from further supports.

and Measures: This was a qualitative hermeneutic phenomenological longitudinal follow-up study in which we interviewed 8 transgender and non-binary people living with endometriosis. We analyzed our findings with phenomenological analysis and applied Leder’s theory of the Chessboard of Healing Strategies.

We discussed our findings under the following themes: (1) Escaping the body: “Are you familiar with delulu?” (2) Embracing the body: “I feel good in my body, it feels at home here”, (3) Remaking the body: “More looking at what my body can do”, (4) Re-timing the body: “Some dysphoric moments” and “It feels good in here”, and (5) Reconnecting the body: “Feels like home, it feels comfortable.”

Participants needed to use a layered application of Leder’s healing strategies as they not only needed to cope with their endometriosis but with experiences in which they had gender dysphoria and experiences of discrimination from society and HCPs (Healthcare Providers). The use of multiple coping strategies revealed resilience and adaptation, however having to constantly find ways of coping can be emotionally exhausting. We recommend that HCPs and community structures provide support to transgender and non-binary people with endometriosis with their healing as they navigate a layering of coping as they struggle with gender dysphoria, discrimination, being unsafe and a lack of support. PUBLIC SIGNIFICANCE STATEMENT Transgender and non-binary people with endometriosis apply multiple coping strategies of mitigating life with a chronic illness which significantly impacts their wellbeing. HCPs can support transgender and non-binary people in the application of coping strategies.

Endometriosis is a chronic, inflammatory and estrogen dependent disease that is known to present with endometrial-like tissue growing outside of the uterus (As-Sanie et al., Citation2025). Much of the research on endometriosis is focused on cisgender women with reports of it affecting 10% of cisgender women throughout the world (As-Sanie et al., Citation2025). Endometriosis is also known to affect transgender and non-binary people and has been shown to negatively impact on their quality of life in social, psychological and biological areas (Eder and Roomaney Citation2025a; Giacomozzi et al., Citation2026). Endometriosis can have devastating effects on patients’ lives with symptoms of pelvic pain, heavy menstruation, pain with intercourse, pain with bowel movements and urination, nausea, bloating and fatigue (NICE, Citation2017). Transgender and non-binary people with endometriosis not only have to manage their endometriosis symptoms but also gender dysphoria (where a person experiences psychological distress as a result of incongruence with one’s gender identity and the sex they were assigned at birth [Farooq, Citation2025]) as a result of these symptoms (Giacomozzi et al., Citation2024). Further to this, transgender and non-binary people also have to navigate healthcare for their endometriosis that does not include their gender identity which can result in a lack of gender affirming healthcare, experiences of their gender identity being invalidated, experiences of gender dysphoria, experiences of discrimination and medical trauma (Day et al., Citation2025; Eder & Roomaney, Citation2025a; Citation2025c; Giacomozzi et al., Citation2024; Jeffrey et al., Citation2024). Theorists of Phenomenology of Embodiment center people’s experience of living with an illness and highlight how a person’s bodily awareness is accentuated when they are chronically ill as there is a shift of attention toward their body due to the body being in pain or discomfort (Fernandez, Citation2020). This attention shifts a patient’s existence and their sense of meaning (Fernandez, Citation2020). There can be a sense of disintegration from our bodies and world with the experience of an illness (Leder, Citation2023). Although an illness is intrusive on a person’s life, through time a person can adapt to living with the illness (Carel, Citation2012). People’s ability to cope with a chronic illness is dependent on variable factors (Al Kalaldeh et al., Citation2018). In a pilot study with 22 secular Jews with cancer, researchers identified coping mechanisms which included openness to living with the chronic disease, connection with family and others, finding meaning and purpose, interconnections with the emotional, physical and spiritual parts, having a positive outlook, and their utilization of humor (Bentur et al., Citation2014). Patients living with endometriosis have practiced similar coping skills as described by Bentur such as acceptance of living with endometriosis, relying on social support, understanding their endometriosis, self-management, practicing positivity, encouraging oneself and engaging in spirituality (Roomaney & Kagee, Citation2016). Patients with endometriosis who practice positive coping strategies have been shown to have less depression and better adaptation to stress, whereas the practice of maladaptive coping strategies has been linked with an increase in stress and depression levels (Donatti et al., Citation2017). Carel (Citation2012) highlighted that illness does not only affect a person’s physical abilities but affects the person’s adaptability and can result in the loss of abilities. To address these impacts, Carel (Citation2012) suggests (1) phenomenological reduction, which requires reflection on the understanding and experience of the illness, (2) thematizing illness, which involves understanding the illness from different dimensions, such as social aspects or pain, and (3) a reflection of one’s being-in-the-world or how one finds meaning. A patient is not passive but an active agent who utilizes healing and coping strategies (Leder, Citation2023). People with illness develop creative means of coping and healing and this can be without medical intervention (Leder, Citation2023). Leder (Citation2024) described a chessboard with twenty possible moves or healing strategies a person with chronic illness can make in their healing process. Leder (Citation2024) divided the twenty strategies under five different healing orientations which align with five features of embodiment; these are (1) Escaping the body (I have a body), (2) Embracing the body (I am a body), (3) Remaking the body (I can’t), (4) Re-timing the body (I’m time), and (5) Reconnecting the body (we inter-act). The twenty strategies divided under these five orientations are not ranked but are grouped in relation to their features that characterize them. Every healing strategy has a healing and a shadow side (Leder, Citation2023). Leder’s theory is fairly new to the literature although this is the third book on embodiment from a phenomenological lens (Swanson, Citation2024). According to Leder’s theory, patients are active in their sense of trying to find healing and the HCP can support in this healing process (Swanson, Citation2024). There is support for the theory. For example, Leder and Krucoff (Citation2023) have applied the Chessboard of Healing Strategies to a case study of a patient with a myocardial infarction and experienced chronic heart failure. Their case study showcases the utilization of the healing strategies and where HCPs can support in a patient’s healing. In addition, Svenaeus and Leder (Citation2026) reviewed Leder’s Chessboard of Healing Strategies and highlighted its helpfulness for those living with chronic pain. There is limited research on transgender and non-binary people living with their endometriosis and this research highlights that they experience additional barriers in receiving healthcare for their endometriosis, gender affirming endometriosis healthcare and support with their endometriosis and their gender identity (Day et al., Citation2025; Eder and Roomaney, Citation2024; Citation2025c). There are no studies that are focused on the lived experience of transgender and non-binary people with endometriosis and how they cope in living with this disease. The aim of this study was to explore transgender and non-binary people with endometriosis experience of practicing Leder’s phenomenological healing strategies for their endometriosis and the intersections these healing strategies had with their gender identity. We conducted this research to explore the coping of transgender and non-binary people with endometriosis to reveal what participants are already navigating in relation to actively coping. We also aimed to explore areas in which transgender and non-binary people with endometriosis may benefit from further support from HCPs. This research may support both patient and HCPs in reviewing patients’ ways of healing and where they need help. This research is important because transgender and non-binary people have additional factors to manage in their healthcare for endometriosis and these factors need to be considered in their care.

Author positionality statement We are cisgender women and the first author has endometriosis. We are psychologists and have researched transgender and non-binary people with endometriosis lived experience. We have discussed and presented our research with gender diverse endometriosis online support groups, at a Transgender and Endometriosis International Conference, and other such platforms. Details of study and participants In this study we used qualitative methodology and applied hermeneutic phenomenological analysis. We applied hermeneutic phenomenological analysis because this approach has a focus in lived experience and understanding of a person or a phenomenon in context (Dibley et al., Citation2020). This study was a follow-up to a study in which we explored the lived experience of eleven transgender and non-binary people living with endometriosis in 2022. In the initial study participants needed to have a suspected diagnosis of endometriosis, be transgender and/or non-binary, be eighteen years or older, and be able to communicate in English. We had contact with the participants of the initial study when we shared the publication of articles and the participants then shared updates pertaining to their endometriosis treatment and their gender identity. From our reflections on the participants’ updates we identified that a follow-up interview may be valuable in relation to research on transgender and non-binary people’s experience of living with endometriosis. Participants were invited by email to be part of the follow-up study. Eight participants from the initial study volunteered for this follow-up study. Data collection We collected data through one online semi-structured interview that was conducted over Zoom and was approximately sixty minutes in length. Participants had the option to keep their cameras off for the interview, however most of the participants decided to keep their cameras on. Interview questions were constructed to focus on what had happened regarding participants’ endometriosis and their gender identity since the previous interviews, two years ago. These questions focused on participants’ feedback to us. Questions that we asked centered on participants current experience of their endometriosis, treatment thereof, their gender identity and their lived experience of being transgender and non-binary and living with endometriosis. The interviews occurred through October to December of 2024. The interviewer is a counseling psychologist. Ethical considerations We received ethical approval for this follow-up study through anonymous for review committee. Participants were given pseudonyms in the write up of this study to protect their identity. Participants were given the option to create their own pseudonym. As participants were sharing vulnerable information; such as medical trauma, experiences of discrimination and living with a chronic, debilitating symptoms of endometriosis a counseling session was provisioned for if they felt they needed this. Participants were provided with a gratuity of a US$50 Amazon gift card for their time and participation. Data analysis We applied Hermeneutic phenomenological analysis and utilized Patterson and Williams (Citation2002) seven step analysis process. Following this process allowed for a structured approach although the application of the hermeneutic circle meant that we moved between the data, their reflections, theory and analysis throughout the process. In the first step the first author conducted the eight interviews and transcribed these. During this process the first author reflected that participants were practicing various coping mechanisms and were processing living with endometriosis and their gender identity. In step two, both authors created a system to reference the data by numbering the lines of the transcripts and copying them into the Atlas ti program. In step three we read and reread transcripts while reflecting on these. For this study and this article our reflections were centered on how participants were processing and finding ways to cope with their endometriosis and where their gender identity intersected with their lived experience of this chronic condition. Step four required us to find meaning units in the text and we labeled these with descriptions of ‘coping’ or ‘coping mechanism’ or psychological processing/reflecting’. With step five we reflected on these broad meaning units and reflected on theories of phenomenology of embodiment and illness. Leder’s Chessboard of Healing Strategies seemed to align and support participants’ experiences in relation to how they coped and made sense of living with endometriosis and being transgender and non-binary. We therefore linked the meaning units with the healing strategies and used these to develop the themes. In step six we reflected on these themes of healing strategies and how they interconnected with participants’ narratives of their experience of living with endometriosis and their gender identity. Then finally in step seven we wrote up the interconnections of participants’ experience of living with endometriosis, being transgender and non-binary and the healing strategies they utilized. We had a challenge in our analysis as participants’ experience could be described under more than one healing strategy. Our analysis did not follow a linear process as reflections and interconnecting happened throughout as we reflected on the data, the theory, interconnections and our reflections. Findings Participants shared experiences of using Leder’s Chessboard of Healing strategies. In our findings section we have described participants’ experiences of how they coped with living with endometriosis using these twenty healing strategies and how these strategies interconnected with their gender identity. We divided the findings under themes as described by Leder’s five areas and a quote from participants’ transcripts; (1) Escaping the body: “Are you familiar with delulu?” (2) Embracing the body: “I feel good in my body, it feels at home here”, (3) Remaking the body: “More looking at what my body can do”, (4) Re-timing the body: “Some dysphoric moments” and “It feels good in here”, and (5) Reconnecting the body: “Feels like home, it feels comfortable.” We added participants’ quotes to the themes to center their words and lived experience of the healing strategies. Under each theme we discuss the healing strategies as illustrated in the below table. Participants’ demographic information All eight participants had a diagnosis of endometriosis and reported experiences in which they struggled to receive their diagnosis and gender affirming endometriosis healthcare. Participants described living with endometriosis symptoms from their adolescent years and they had tried numerous treatments as one participant described in their intake form that they/he had, 2 laparoscopic excision surgery, lysis of adhesions, appendectomy, cystectomy, hormonal contraceptives (combo pill, mirena, the one that goes in the arm, orillisia, Visanne, Lupron, pelvic floor PT, pain management, mental health counselling. Heating pads, warm baths/showers…and long naps… Currently on Lupron, Norethindrone acetate 5mgs? add back and androgel 1% 5 grams a day. I find T to be a potential treatment. Also currently on morphine, dilauded, lyrica, and baclofen to treat pain… Other participants shared similar reports of having surgeries, hormonal treatments and pain management. All participants described the struggle in receiving endometriosis healthcare and endometriosis healthcare that included their gender identity. Of the eight participants, one participant was transmasculine, one participant was transmasculine and non-binary and six of the participants were non-binary. One participant was from Norway, two participants lived in Australia, two participants were from the USA, and three participants were from Canada. Participants’ median age was thirty-one years of age, while the youngest participant was twenty-four years old and the eldest participant was thirty-four years old. Three participants described their employment as self-employed, two participants worked full-time, one participant was a student, one participant was unemployed and another participant marked other for employment. Escaping the body: “are you familiar with delulu?” ‘Escaping the body’ aligns with the embodiment feature of ‘I have a body’ and has four healing strategies, these are: (1) ‘Ignoring’ of endometriosis symptoms and gender dysphoria, (2) ‘Refusing’ endometriosis and struggles with gender identity to impact on one’s life, (3) ‘Objectifying’ by separating out the parts that are unwell, and (4) ‘Transcending’ through trying something else and with humor. Participants shared different experiences of how they tried to escape their body as a means to cope with living with endometriosis and experiences with gender dysphoria. We share some of participants’ experiences in relation to escaping their body as a means of healing. ‘Ignoring’ of endometriosis symptoms and gender dysphoria The Chessboard healing strategy of ignoring involves a process of not focusing on symptoms or limitations with the experience of illness so that a person with an illness can continue to live one’s life (Leder, Citation2023). River, a twenty-seven year old, non-binary demi girl from the USA, described how before and after surgery for her/their endometriosis that she/they experienced dissociation as a means to cope with the pain and how she/they was feeling, In order to survive the amount of pain that I was in everyday I had a mental dissociation from my body. I basically felt that I wasn’t aware of or conscious of my body as a way to get through the amount of physical pain I was in every day. And then after my surgery after my body was going through these immense changes to adjust to everything that I had been through, I continued to just disassociate from it because it was uncomfortable. River had previously shared how she/they had struggled to receive treatment for her/their endometriosis and treatment that was gender affirming. She/They experienced dissociation, a possible unconscious ignoring and an escaping of the body because of her/their experience with the pain of endometriosis. This was a means to cope in living with endometriosis and with the recovery after surgery, as well as her/their gender dysphoria, she/they said, I would look at my body and see scars and I would think about the absence of the organs that had been taken away and the way that everything in my body was shifting and adjusting and the hormone changes and it was so overwhelming. River’s experience also highlighted that transgender and non-binary people may have additional stressors to navigate in their healing after endometriosis surgery that is gender affirming as they may need to process years of struggling to receive gender affirming healthcare and the changes they experienced as a result of finally receiving gender affirming healthcare. Daniel, a twenty-four year old, transmasculine person from Norway, shared his experience of trying to ignore his gender dysphoria and endometriosis, So my body can be shaking and just really in my head just super calm. So it’s sort of like a disconnect, it does make things easier to deal with until the world hits. Daniel found a sense of disconnect helpful in relation to living with endometriosis symptoms and his gender dysphoria with this condition. However, this strategy was helpful “until the world hits”. From Daniel’s experience we can see the shadow side of this healing strategy in that escaping and ignoring can result in temporary relief but then inevitably needing to face all the struggles and problems. From both Daniel and River’s experiences we can observe that ‘ignoring’ seems to be more of an unconscious process and may be better described with their words of “disconnect” and “dissociation”. ‘Refusing’ endometriosis and struggles with gender identity to impact on one’s life Refusing refers to not allowing the illness to limit one’s life. Jru, a thirty-one year old, Agender, gender non-conforming non-binary individual from the USA, practiced refusal by not allowing their health, their previous trauma and their struggles in relation to their gender identity stand in their way as they discussed the term delulu, Delulu is just like a fancy way to say delusional or delusion and so I’ll put it in a sense of again hoping for the best outcome later on, maybe things are not the best quote unquote or ideal for me presently, but that doesn’t mean that I need to manifest backwardly for the future or do some sort of self-fulfilling prophecy of, things will never work out for me because they are not working out right now. If I think that way and I allow my brain to go down what it’s used to doing, the negative default of like, well we need to survive and everything is out to get us and stuff. Jru used refusal as a positive means to heal as they did not allow themselves to go back into negative patterns of thinking. Jru further shared how being delulu aided in their resiliency of living with endometriosis symptomology, Mentally I’m trying to keep my mental strength strong because I think for me anyways that’s always been stronger than not. And my physical health versus mental health, physical health has taken a toll from endo pain or whatever it is but as long as my mind is strong then I can have a better bounce back kind of resiliency kind of statistic or something. Crow, a thirty-four year old, non-binary, gender queer, trans individual from Canada, shared how they experienced misgendering in healthcare settings when they were seeking help for their endometriosis, they said, It doesn’t feel right that it’s not affirming, it’s disaffirming you know but like it feels wrong and yucky but it doesn’t make me feel wrong and yucky about myself. Crow refused to take on the misgendering act as something wrong with them. They shared how they decided to accept their body and refuse other people or HCP’s discriminatory or misgendering behavior, but yeh I am me, my gender is my gender, I know my gender, I know who I am and it doesn’t matter what anybody else says or does… Jru shared how delulu could be harmful and have a shadow side as well. They shared that they stayed with a HCP who did not hear them in relation to their gender identity. They said, I was in denial, delulu about it [staying with a HCP who was not hearing them regarding their gender identity] and I stayed, I overstayed a space that I was receiving care and feeling heard and better, but in reality it wasn’t the truth. ‘Objectifying,’ by separating out the parts that are unwell Objectifying involves a process where a person with an illness depersonalizes their body and their experience (Leder, Citation2023). Some participants shared how at times they objectified their body. Crow spoke about endometriosis as if it was a completely normal part of life, “And in terms of my endometriosis it is what it is…” Crow spoke about their body very matter of factly, “I have to physically remove something from my body to start my period and then I reinsert a new thing of that into my body. It’s like the plastic hormonal ring that you put in your vaginal canal.” They further said, Yeh still get really sick, still get really fatigued, still have cramps so severe that I can’t walk. You know but it’s different than like gushing giant purple clots. It’s better but at the same time it’s still bad. We viewed this as Crow’s means of coping and talking about their experience. By labeling their symptoms and treatment with the hormonal ring they were able to describe their experience as if it was a broken machine and thereby compare their experience and the effectiveness of their current treatment (Leder and Krucoff, Citation2023). Crow spoke about struggling with the symptoms and wanting a hysterectomy, they said, I’m just tired of the blood and the chunks and the pain, the nausea and being so tired all the time. I just want it to stop. Crow was able to describe their symptoms and thereby identify that they needed further medical intervention. Crow spoke about their gender identity in a similar way, Honestly, I am at a point in my life where I’m very comfortable with my body, you know the outside of it, everything and it being relatively aligned with my gender. You know what they say, transition is never finished right, and I’m transitioning in a very non-traditional way, which is still valid. Crow seemed to show acceptance of their journey with their gender identity by their very matter of fact way of expressing their experience. Crow further discussed the concept of duality and being at home with their gender identity and struggling with their body in relation to endometriosis, Duality is a very real concept. You know I can be a disabled person who deals with chronic illness and chronic pain and I can be trans, ooh… intersectionality, you know? But it’s like I can feel really good about my gender but also feel really shit. Crow separated out the parts of them that felt unwell and painful which provided a space for the parts, their gender identity, that were well. ‘Transcending’ through trying something else and humor To transcend our body means to be more focused on aspects of our intellect, imagination, humor, or spiritual aspects (Leder, Citation2024). Participants described various ways they transcended their experience with endometriosis. Jru shared how they were, “trying to learn the virtue of patience and definitely bringing humor into the situation.” Jru shared the importance of transcendence they said, “just trying something and moving the needle a little bit, just trying it. If it doesn’t work out, we can try something else.” Remy, a thirty-year-old non-binary person from Canada shared how they practiced transcendence by engaging in a hobby and using their sense of humor. They were finding joy in creating costumes, “I’m just like a muscular mushroom, it was grand. I’ve created my own characters (laughs). It’s really …it’s one thing I’ve been finding a lot of joy in.” Remy also used their sense of humor to cope, “Yeh I generally deal with my dysphoria or even trauma in general with humor-based mechanisms. It makes me funny.” Remy used their creativity and humor as a healing/coping strategy for their endometriosis and gender dysphoria. Embracing the body: “I feel good in my body, it feels at home here” Embracing the body “I am a body” healing orientation includes the following four healing strategies: (1) ‘Listening’ to the body and what it needs, (2) ‘Befriending’ the body in living with endometriosis and one’s gender identity, (3) ‘Acceptance’ of living with endometriosis and its impact on the body, how diagnosis supports acceptance, and the devastating impact of a lack of gender affirming endometriosis healthcare, and (4) ‘Witnessing’ as a means to observe endometriosis symptoms and manage gender dysphoria. These healing strategies support the person with a chronic illness move toward and have a relationship with their body (Leder, Citation2023). ‘Listening’ to the body and what it needs Listening as a healing strategy references the person with the illness hearing their bodies, for example with symptomology such as feeling fatigued or when they are in pain (Leder, Citation2023). Participants shared that through time of living with endometriosis they learnt to listen to their bodies and would apply various coping strategies and lifestyle behaviors to support them, such as rest, changes to their diet, and changes in their sexual activity. River shared how she/they had learnt about her/their body and listened to what it needed. She/They said, I still have to be conscious about for example if I go out with my friends tonight, I will not really be functioning well tomorrow. So, I have to consider the impacts of the amount of energy that I use. I have to like remember the limitations on my body. Daniel shared how it has been a process to learn about and to listen to his body. He described how he needed to listen to his body in relation to taking painkillers, Yeh and I also know that I take pain killers too late, so I’ll actually think like okay if this develops anymore I’ll actually have to take pain pills. ‘Befriending’ the body in living with endometriosis and one’s gender identity The befriending healing strategy centers on forming a compassionate friendship with one’s body (Leder, Citation2023). River spoke about the layers that she/they experienced in relation to being non-binary and having endometriosis, It’s like one of the things that break my heart is that the endometriosis community is kind of like, ‘oh your body is betraying you, you have this horrible disease and you live with pain every day’ and for people that are queer it’s even worse because it’s like your body betrayed you like from the day you were born. Then society betrays you by treating you a certain way, and now you have this disease on top of it, so it just feels like this big whole like how can you not hate yourself? And for me going through those mindfulness exercises and like coming back to my body and realizing like I have to love my body because I don’t have a choice because life will be miserable if I don’t. River shared how she/they needed to befriend her/their body to come to a point of acceptance. She/They shared the additional layers she/they needed to navigate of living with endometriosis and being non-binary. River had felt that her/their body had betrayed her/them with her/their gender identity, that society was rejecting of her/their gender identity and she/they needed to manage endometriosis. ‘Acceptance’ of living with endometriosis and its impact on the body, how diagnosis supports acceptance, and the devastating impact of a lack of gender affirming endometriosis healthcare Acceptance involves a process of accepting one’s health condition and one’s body as it is. Robin, a twenty-nine year old non-binary individual from Australia shared how they needed to accept their body so that they could cope with living with endometriosis, It’s just knowing and accepting that not every day is going to be okay as well. Like you are going to have low days and you can’t push through it. River shared how it had been a process to come to acceptance but that she/they had found it helpful. She/They said, I have been working on like therapy for that so I can work through the just, like the sense of injustice you could say. I get angry like, it’s unfair that my life is impacted this way! Um and I’ve changed that mentality and I’ve really embraced Buddhism as a philosophy of these challenges are given to you for a reason and your job, like your purpose in your life and your way of finding meaning is to instead to embrace those challenges as like, you were given that path so that you’re going to learn the lessons it has to offer. Life is cyclical, you have good things happen and bad things happen and they’re always going to happen, they’re just going to continue to happen and your job is to learn how to go through them gracefully. And so that and just that mentality and that philosophy has shifted my quality of life. From River’s experience we can perceive how she/they shifted how she/they thought about living with endometriosis and how this brought about acceptance which had a positive impact on her/their quality of life. Crow shared how the diagnosis of endometriosis helped them come to a point of acceptance of living with endometriosis. They said, I mean a big part of me is like knowing what is going on with me. It’s not any ambiguous thing anymore and it’s not in the words of one doctor years ago, ‘Just bad periods!’ Right? Like I know what’s going on with me, it has a name, it has a face, its real. And that for me anyway makes it a lot easier to deal with and just kind of putting all the puzzle pieces together. Ez, a thirty-three year old, non-binary, transmasculine individual from Canada, shared that they/he needed to accept that they/he would never have the masculinization that they/he would have wanted. This was a result of not receiving gender affirming endometriosis healthcare and having only started testosterone recently. Ez shared, I’ve kind of accepted through taking T [Testosterone] that I’m more of a trans man um but that’s not socially my role. That’s not what I’m going to look or act like. I’m just not going to ever have that. Ez described how they/he felt about this, “pretty much devastating. But I’m just happy with just trying to be accepting and happy with any masculinization at this point.” Ez shared how they/he tried to cope with the impact of not receiving gender affirming endometriosis healthcare when they/he was younger and how acceptance aided them/him with this. They/He recounted however that their/his experience of this was devastating. ‘Witnessing’ as a means to observe endometriosis symptoms and manage gender dysphoria Witnessing directs the individual with an illness to observe one’s experience with the body without judgment (Leder, Citation2023). Jru shared how they could witness a bad day and know that it is temporary, they said, Either way it’s going to be temporary, its impermanence and so that’s the beauty of it for me in a sense so even if I am having a rough day or time or one day then I know its impermanent and it’s not going to last forever. Jru used the words ‘somatic storm’ to represent what was happening with their body in a genderless way to describe their endometriosis, The literal term storm came to me cause of genderless regarding body and then I put somatic on top of this is a somatic storm right, period week or however um with an ovary still and endo growing back. The use of ‘storm’ seemed to provide space for Jru to reflect on their experience without triggering gender dysphoria and it was helpful to be able to then reflect on their experience. Remaking the body: “more looking at what my body can do” Endometriosis had negatively impacted on all of the participants’ quality of their lives and so their “I can” had shifted. They utilized a number of coping strategies in relation to these negative effects. They used the following healing strategies of Leder’s chessboard in Remaking the body, (1) ‘Restoring’: How gender affirming endometriosis healthcare can result in “I can”, (2) ‘Transforming’ and (3) ‘Incorporation’ through the use of methods to support with endometriosis symptoms and gender dysphoria, and (4) ‘Imagining’ through visualization that HCPs will help. ‘Restoring’: How gender affirming endometriosis healthcare can result in “I can” To restore involves a process in which a person with an illness tries to restore their functionality or their “I can” that they experience in living with an illness. River shared that after their gender affirming endometriosis surgery they/she were able to restore some of their/her health and this had a significantly positive impact on their/her wellbeing. They/She said, Now riding my horse and running, it’s like I can do things with my body I wasn’t able to before. I’m getting emotional talking about it, it’s like sometimes it hits me that like two years ago I was disabled. River’s experience highlights the significance that endometriosis gender affirming healthcare can have. Not all participants had gender affirming endometriosis healthcare or endometriosis healthcare treatment and this was a limitation to utilize restore as a healing strategy. ‘Transforming’ and ‘incorporation’ through the use of methods to support with endometriosis symptoms and gender dysphoria When a person cannot restore they may try to transform to aid in their healing as well as incorporating devices to support them. Participants shared various ways in which they coped with endometriosis symptomology and how they used methods to aid in their transformation and incorporation of living with this disease. These methods included the use of a walking cane, a tens machine, their clothing, the type of exercise and when they would exercise, their diets and their lifestyles. Robin shared how they coped with living with their endometriosis through exercise and adapting their exercise when they had an endometriosis pain flare. They further shared how exercise had aided them with gender euphoria and they felt better in their body, they said, Cause it’s like more looking at what my body can do rather than what my body looks like. Um and so there will be times where I really enjoy how big my biceps are growing. Robin seemed to use exercise to cope with endometriosis flares and to transform their body so as to experience gender euphoria. Remy shared that because of endometriosis flares they would wear clothing that was more comfortable but also clothing that did not trigger gender dysphoria. They said, I’ve changed my shirt like three times before I even made it outside my room because I just, I couldn’t handle the way some shirts make my body look. And all my shirts are baggy but it’s just the way sometimes things lay and automatically the dysphoria just flares up, it’s alongside with the endometriosis flare. This is a transformation that Remy could make so that they felt more comfortable and less dysphoric in their body. Endometriosis is known to cause endo belly (a swollen abdomen) and we can see from Remy’s experience how this may have triggered how they felt in their body and how they felt dysphoric in relation to their gender identity. River shared that part of their healing from endometriosis and gender affirming endometriosis surgery meant that they were able to experience more with their body and their gender identity, Over the past year I’ve been playing with the fluidity of like some days I’m feeling more feminine and some days feeling more masculine and that’s sort of a confusing experience and sometimes, well I’m still exploring that. I can just wake up one day and decide I’m wearing a dress or wake up one day and decide I’m perceived masculine that day. Gender affirming endometriosis surgery provided a space to explore and learn about River’s sense of self and gender identity. Both Remy and River used clothing as a means to transform and incorporate healing with their experience of endometriosis and their gender identity. ‘Imagining’ through visualization that HCPs will help Imagining has been described as a powerful visualization healing strategy (Leder, Citation2023). Daniel shared how he pictured things working out in relation to finding a HCP that would support him with gender affirming endometriosis healthcare, he reflected, Yeh, it’s also like insurance and everything on top of that. But it’s not something that’s like…. I can reach it if I want, so it’s going to be fine. Daniel being positively focused on receiving the healthcare that he needed was helpful for him in coping with living with endometriosis and being transgender. Re-timing the body: “some dysphoric moments” and “it feels good in here” Re-timing the body is centered on changing the relationship and narrative of our past, present and future and consists of the following healing strategies (1) ‘Remembering’ by tracking one’s experience and all one has been through, (2) ‘Anticipating’ and looking to the future has a shadow side, (3) ‘Presencing’, being in the present moment acts as a healing strategy but can also be triggering, and (4) ‘Re-envisioning the body’. ‘Remembering’ by tracking one’s experience and all one has been through Remembering as a healing strategy is focused on remembering the past. Remembering can be helpful in that a person can reflect on their life and experiences (Leder, Citation2024). Participants used remembering to reflect on their experience of living with endometriosis and their journey with their gender identity. Jru shared how they tracked their experience by writing it down and remembered what they have been through. They said, I will transcribe it onto the computer and then essentially try and preserve and honor my voice and track my …that’s more of a trauma thing I think so but it can be helpful with endo and I can be like, ‘oh yeh, I felt this way.’ Remembering seemed to be a way for Jru to honor their voice. Remy shared a similar experience in reflecting on what they had been through as a way to try and understand more about their body. They said, It’s just a very interesting way that my body has gone over the last couple of years and the only ways to lower the pain levels, um it’s just my body is just in constant pain. Sometimes it’s hard to pinpoint what’s causing the pain at the moment, but lots of medications, lots of non-typical medical relief that I do, like acupuncture, CBD, and trying to figure out non-medical ways to try to help with the pain because the medication doesn’t help all the time. Remy found it helpful to reflect on their experience with endometriosis and their pain so that they could figure out what was helpful in managing their pain. ‘Anticipating’ and looking to the future has a shadow side Anticipating is a strategy that helps the person with illness look to the future (Leder, Citation2023). Participants shared that anticipating often presented in the worry about the progression of endometriosis. Sawyer, a thirty-four year old, non-binary, gender queer individual from Australia shared, “I’m just waiting for things to get worse,” as they described living with endometriosis and they had gender affirming endometriosis surgery and treatment but had a return of endometriosis symptoms. Endometriosis is a chronic condition and is known to have a return of symptoms after treatment. Remy shared how they feared the impact of living with endometriosis and the endometriosis flares as they triggered gender dysphoria, As much I would like to say that the endometriosis and my gender, they are what they are, but because then that requires that my endometriosis then my stomach gets more swollen or my boobs get more swollen and all of a sudden I become more conscious of the way that my body looks and it does bring on some dysphoric moments. And the idea that that can be a constant thing for a while until my doctor says, ‘yup we’ll do the surgery again’, does have a lot of connections. Anticipating seemed to be negatively focused for participants rather than a positive coping mechanism and therefore had more of a shadow side. It can be a strategy that encompasses hope and a few participants shared how hope was helpful for them. They shared how they hoped for gender affirming and inclusive healthcare for their endometriosis. Jru said, There is hope in a hopeless situation because the word hopeless you can’t have without the word hope in that hopeless. It’ll be harder to feel it in those days but that does not mean it’s not there. From Jru’s quote we can perceive that they experience both hopelessness and how they try and cope with this by utilizing hope. Ez shared how they/he struggled to have hope when they/he had been through so many negative experiences in receiving gender inclusive and affirming endometriosis healthcare, Honestly coping to me, I don’t know what that means anymore. Hopeless it’s kind of, it’s lost a lot of meaning. ‘Presencing’, being in the present moment acts as a healing strategy but can also be triggering Presencing as an orientation in time and is focused on the present or current moment (Leder, Citation2023). Remy shared that although they struggled with pain from endometriosis that they felt they could be more present in their body as they managed their gender dysphoria. They said, It feels more at home in here. I experience less dysphoria moments. So I feel that my body looks and presents the way that I want it to, that I’ve kind of created the, like the videogame character that I created that I’ve always wanted to be, but like in a person. So, it’s been good. It’s good in here. Ez shared how presencing could feel impossible and shared the shadow side of presencing and their/his need to escape, At a certain point it is best to be sleeping just to be out, just to be totally unconscious because I can’t deal with it…. I don’t know I am on and off medications that I am okay with it …I am incredibly physically and emotionally uncomfortable. Ez described how they/he were not only managing endometriosis pain but also discrimination which made them/him uncomfortable and they/he needed to escape their/his body, People started threatening… I experienced an increase in violence, physical sexual …I’ve just experienced so much harassment that it’s like how do you feel comfortable walking around when people are calling you a freak and threatening to bash your head in! For Ez to cope they/he needed to rather utilize escaping the body, rather than being present. ‘Re-envisioning the body’ Participants reflected on their experience and their healing and how they wanted to re-envision their lives and make a difference. River shared, I haven’t even finished college yet because of all of my health issues and so my dream is that like my next steps isn’t my health needs but what I can do for other people, how can I help other endometriosis patients. The book that changed my life the most while I was going through all of this was that I reread Viktor Frankl’s Man Search for Meaning and in that book he talks about, you know he lives through the holocaust. … in my head thinking like, ‘Okay I lived through something that was really crappy but what am I going to do with that?’ River reflected on what they/she had been through and how they/she were trying to find meaning and re-envision their/her life. Reconnecting the body: “feels like home, it feels comfortable.” Reconnecting the body is linked with the ‘I have a body’ and invariably our bodies are linked to a ‘we’ and therefore with other people. The strategies under Reconnecting the body are (1) ‘Being objectified’ and being treated by HCPs as an object, (2) ‘Communing’: Finding support through shared experience, (3) ‘Receiving:’ a lack of support and safety, and (4) ‘Giving’ by supporting other gender diverse people with endometriosis. ‘Being objectified’ and being treated by HCPs as an object Being objectified describes the healing strategy of the helpfulness of a HCP who treats the patient as a material object as it assists with diagnosis and treatment from a scientific perspective (Leder, Citation2023). However, Leder (Citation2023) highlighted that there is a shadow side for a number of patients of being objectified as it depersonalizes the person. Participants shared their experiences in being objectified by HCPs. Being objectified was helpful when it included their gender identity and thereby they received gender affirming healthcare for their endometriosis. Leder and Krucoff (Citation2023) argue that objectification can be harmful when it is unequitable and discriminatory, such as with black people’s experience of discrimination in healthcare, women’s healthcare concerns not being taken seriously and much medical practice being focused on men. This was true for our participants who did not receive gender affirming endometriosis healthcare. Participants also needed to mitigate the stressors of living with endometriosis and their healthcare for their condition while they navigated misgendering, discrimination and a lack of inclusion regarding their gender identity. We illustrate this with Ez’s reflection with their/his experience with HCPs, Yeh I get misgendered, I get constant harassment from doctors, it’s pretty bad… I found one hospital that’s better but this is a very transphobic group of doctors in [name concealed for confidentiality purposes], it’s just a very, very sexist group of people and being trans is just a joke to them. ‘Communing:’ finding support through shared experience Leder (Citation2023) explained that the lived experience of people with illness can be very isolating and the healing strategy of connecting with others who may be going through a similar experience can be a critical coping mechanism. Sawyer shared the supportive impact connecting had on them by being part of an online gender diverse endometriosis community that they created, I think being vulnerable about my journey and starting the Instagram page for my identity and people like me, it just introduced me to so much community and that strength of holding onto each other through so many hardships and struggles and meeting so many people at different points in their journey in the community has been so incredible. Daniel shared how he received support from his friends, however he felt unsupported by HCPs, I had, I actually had more support in my friends, than I actually had from the hospital. Yeh, I had some older trans friends that really helped me. I’ve never really had any help from the doctors here. Remy shared the positive experience they had in having supportive friendships and being a part of a gender euphoria group, We just talk about like how it is going and things that we have been doing and it’s, it’s just nice. I don’t know how else to express it, but it just feels like home, it feels comfortable. ‘Receiving:’ a lack of support and safety People are interdependent on each other and receiving support can be a critical healing strategy in living with a chronic illness, such as endometriosis (Leder, Citation2023). Receiving support involves a process of a patient being open to receive support (Leder & Krucoff, Citation2023). Participants shared limited experiences of support. For example, Ez had shared experiences with support, however there were also experiences of not being safe, I’ve gotten lots of support in various ways um whether that’s through the medical system or the [community] where I live. So I’ve gotten a lot of support but it kind of falls short of you know, um I’m very grateful for you know a new coat or you know extra food but having a basic level of safety is completely gone. River shared the complexity of receiving support from a therapist due to limited scope for their/her intersections. They/She said, I have gone to therapy for infertility grief for dealing with the emotional effects of having the hysterectomy….But then you start to pull into like I have complex PTSD from childhood abuse, and um I’ve been through these crazy surgeries, and I’m also neuro-divergent and queer, and I can’t find a therapist who, like I’ll meet one that can cover two or three issues but then they’re not gender affirming. While participants were open to receive support there were experiences of a world that was not inclusive of participants’ gender identity and was unsafe. ‘Giving’ by supporting other gender diverse people with endometriosis Giving as a healing strategy can be a challenge as the individual moves through their healing processes and they discover how much they are able to give and how to do so (Leder Citation2023). Participants shared wanting to support other transgender and non-binary people living with endometriosis. In fact, one participant asked to donate their gratuity to endometriosis research and so we donated this to Treat it Queer. Sawyer shared the supportive impact that giving had on them when they created a page that was centered on gender diverse people with endometriosis. They said, I feel so honored to be a part of their journey in the smallest way you know, but where people write to me and they say like, ‘Thank you so much for having this page and making these posts,’ and or there are people saying, ‘I didn’t even know there were other people like me.’ Crow shared how they experienced meaning when they presented a class and created awareness of gender diverse people living with endometriosis. Crow said, It was a really cool thing to do. I wasn’t going to be me and be like, let’s talk about women’s health. Yes women, women are the only ones who experience endo cause that would be wrong and highly disingenuous so making sure to speak a lot about queerness and transness and all these different layers and intersections is really exciting for me. Sawyer also shared the shadow side of giving in that it can be draining, But I just, I feel really sad that it takes this level of advocacy to take baby steps for them for the hospital and you know meanwhile my friends are suffering…. I’m very tired!

Participants utilized the chessboard of healing strategies in relation to living with their endometriosis and their gender identity. From our findings it was clear that participants practiced a number of healing strategies to cope with living with endometriosis and support them with their gender identity. Although Leder (Citation2024) argues that healing strategies are not reliant on HCPs and healthcare but are an independent strategy patients can use, we were aware from participants’ accounts that those that had gender affirming healthcare for their endometriosis seemed to be in a good space in relation to their endometriosis and their gender identity though the utilization of the healing strategies. Participants who had not received or struggled to receive healthcare for their endometriosis and gender affirming endometriosis healthcare had struggles with either or both their endometriosis and/or their gender identity. A HCP who is affirming, open, empowering of a patient’s medical decisions and validating of an individual’s gender identity is critical for positive healthcare experiences (Goldfarb et al., Citation2025). Endometriosis patients have reported that trust in their medical care is a protective mechanism (Moore et al., Citation2024). Participants seemed to need to assimilate their coping with living with their endometriosis and with their gender identity. Leder (Citation2024) argued that discrimination is similar to the destructive nature of a chronic illness in the afflicted individual. Participants needed to find ways to heal in relation to living with endometriosis and their gender identity. Participants needed to mitigate not only endometriosis but negative experiences as a result of their gender identity as well. These experiences included needing to navigate gender dysphoria, negative and discriminatory experiences from HCPs and discrimination from society. Studies on transgender and non-binary people with endometriosis report that they have additional barriers to navigate regarding their endometriosis and their gender identity as they experience gender dysphoria as a result of their endometriosis, barriers in receiving gender affirming healthcare, medical gaslighting, misgendering, discrimination, a lack of psychosocial support and a lack of support from the endometriosis community (Day et al., Citation2025; Eder & Roomaney, Citation2024; Citation2025a; Citation2025b; Citation2025c; Jeffrey et al., Citation2024). Leder (Citation2024) described “the Marginalized Body” as part of his theory and described what he names “embodied injustice”. Leder (Citation2024) worked with incarcerated individuals and found that these individuals struggled with similar challenges as one does with a chronic illness and thereby use similar healing strategies to survive a confinement of the body. We can argue that our participants also struggled with confinement as they had experiences in which they had challenges in receiving gender affirming and inclusive healthcare for their endometriosis, and experiences of discrimination from society and from HCPs. We found a layering of confinement in relation to living with the confinement of their chronic illness of endometriosis and in relation to the way others placed confinement on their gender identity. They utilized a layering of healing strategies to mitigate their endometriosis and their gender identity. Leder (Citation2024) further described how the elder community utilizes creative strategies to manage the end stages of life while they live in a discriminatory ageist America. Our participants had experiences in which they needed to not only navigate their endometriosis but also experiences in which they were not safe and not supported with their gender identity in regard to their endometriosis treatment. Those that received gender affirming endometriosis healthcare felt supported in their healing process. The shadow side of the healing strategies was harmful at times, for example in the case of Jru who used refusal and stayed with a HCP who did not hear them in relation to their gender identity. We also reported on participants’ experience of the shadow side of ‘Being objectified’ when they reported experiences in which they were misgendered and discriminated against by HCPs. Cisgender women with endometriosis have reported not being heard, were disempowered and left neglected by HCPs (Gerontakos et al., Citation2025). Transgender and non-binary people with endometriosis have reported experiences in which they were not heard, were misgendered, gaslit, and were discriminated against by HCPs and have struggled to receive gender affirming endometriosis healthcare (Day et al., Citation2025; Eder & Roomaney, Citation2025c). Transgender patients need to self-advocate to have positive experiences in their healthcare (Goldfarb et al., Citation2025) as well as when they need to access care for their endometriosis and endometriosis healthcare that is gender affirming (Eder & Roomaney, Citation2025c). Participants’ reports on coping and our analysis of their use of practicing the healing strategies revealed that participants were actively attempting to cope in living with endometriosis and their gender identity. Utilizing coping strategies in the management of endometriosis can have a significant impact on the individual’s wellbeing (Moore et al., Citation2024). Although patients can practice Leder’s healing strategies on their own, HCPs can play a critical role in facilitating support in negotiating the Chessboard of Healing (Leder & Krucoff, Citation2023). Endometriosis healthcare that is inclusive of a person’s gender identity is critical for their healing and coping. Endometriosis is a chronic illness and requires support from HCPs.

This follow-up study had limitations in that the participants came from across the world and therefore the findings cannot be summarized by one socio-political context. Therefore this study may not generalize to broader groups or be representative of the countries included. This study also only considered intersections of gender identity and health. Participants did not always have intersections in relation to their gender identity and their endometriosis in relation to their utilization of the healing strategies. Further to this, the shadow side of these strategies could have been explored further. Implications for future research Future research could focus on transgender and non-binary people with endometriosis lived experience in relation to specific socio-political contexts. Application and facilitation of helpful coping strategies for transgender and non-binary people living with endometriosis could be explored, for example a study on the development and application of a workshop on coping strategies for transgender and non-binary people with endometriosis.

There is limited research on the lived experience of transgender and non-binary people living with endometriosis. This study explored transgender and non-binary people with endometriosis experience of utilizing Leder’s Chessboard of Healing Strategies. The findings revealed that participants practiced Leder’s healing strategies to support them with their endometriosis as well as their gender identity. Participants needed to mitigate a layering with these healing strategies as they struggled with their endometriosis as well as experiences in which they were not supported with their gender identity by HCPs and were not safe as a result of discriminatory experiences. It is clear that participants were active in their healing and coping. It is important that both patient and HCP are aware of the shadow side of the healing strategies and be mindful against the patient not being heard or feeling their voice is silenced. HCPs can play an active role in supporting transgender and non-binary people with endometriosis use of the healing strategies. In fact these strategies could be developed into a workshop that could be delivered individually or in a group format. Ethical approval statement This study received ethical approval through the Stellenbosch University Health Research and Ethics Committee. HREC Number: S21/07/118(PhD) Patient consent statement All participants provided written consent to take part in this study and for journal articles to be published. Permission to reproduce material from other sources Not applicable to this study.

We wish to honour the participants who volunteered their time for this study. Disclosure statement No potential conflict of interest was reported by the author(s). Data availability statement Data and transcripts are not available due to the protection of participants’ sensitive data as well as they did not provide consent for the release of their transcripts. Additional information Funding

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