Transgender and non-binary people’s perception of their healthcare in relation to endometriosis

Abstract

Background

Endometriosis is described as a gynecological disease that can severely impact on people’s quality of life. Much of endometriosis research and literature is focused on cis women, although gender diverse people and cis men have been diagnosed with this disease. Cis women have reported problems in their healthcare for endometriosis due to delays in diagnosis and a lack of support in their treatment. Gender diverse people have reported to experience discrimination in healthcare settings. There is a lack of research on gender diverse people’s experience of living with endometriosis and little is known about their experience of healthcare for endometriosis.

Aim

Our aim in this article is to report on the healthcare experiences of transgender and non-binary people with endometriosis.

Methods

We used a phenomenological lens to explore the experiences of transgender and non-binary people with endometriosis’ perceptions of healthcare. Eleven participants were recruited through social media internationally. We recruited participants that identified as transgender and/or non-binary, had suspected/diagnosed endometriosis and were 18 years old or older. Participants took part in three online semi-structured interviews and completed a diary for three months. We used Hermeneutic Analysis to analyze the data via themes. Phenomenology of embodiment was used as a theoretical point of departure in understanding the data.

Results

From the analysis, the following themes were created that captured participants’ healthcare experiences: (1) Medical Gaslighting of Endometriosis and Gender Diverse Experiences, (2) Misgendering and Gendered Language, (3) Medical Discrimination, and (4) Validating Experiences with Health Care Providers (HCPs) and Recommendations by Participants. The findings revealed that medical gaslighting, misgendering and experiences of discrimination in healthcare settings had a psychological effect on participants, with reports of dysphoria, self-doubt, fear and a trauma response.

Discussion

Experiences of medical gaslighting, misgendering and discrimination in the healthcare of endometriosis may limit communication between HCPs and patients through limited treatment options being communicated, assumptions in healthcare and participants not feeling safe to disclose their gender identity for a disease that already from cis women’s reports has difficulties in diagnosis and treatment. This highlights additional barriers for gender diverse people to overcome in their healthcare for endometriosis. We recommend that HCPs may benefit from further awareness and training with working with gender diverse people with endometriosis.

Background

Endometriosis is described as a gynecological disorder where endometrial like tissue grows outside of the uterus (National Institute for Health and Care Excellence [NICE], 2017). Endometriosis is a chronic disease which has a significant impact on the quality of life of patients, negatively impacting on physical, psychological, social and sexual areas of life (Kuznetsov et al., 2017). Endometriosis may result in symptoms of chronic pelvic pain, dysmenorrhea (painful menstruation), painful sexual intercourse, cyclical gastrointestinal symptoms, cyclical urinary symptoms and infertility (NICE, 2017). Much of the research and literature on endometriosis describes it as a disease affecting cis women. The World Health Organization [WHO] (2023) estimates that endometriosis affects 10% of cis females at reproductive age. The disease is described as painful and chronic, having a devastating effect on cis women’s lives (As-Sanie et al., 2019). Endometriosis is often referred to as a disease affecting cis women however this description excludes cis men and gender diverse people (Jones, 2021). There are rare reports of cis men with endometriosis (Al-Obaidy & Idrees, 2018; Beckman et al., 1985; Fukunaga, 2012; González et al., 2014; Jabr & Mani, 2014; Martin & Hauck, 1985; Oliker & Harris, 1971; Pinkert et al., 1979; Schrodt et al., 1980; Simsek et al., 2012; Taguchi et al., 2012; Young & Scully, 1986). There are few studies on transgender men with endometriosis (Batchelor & Vasquez, 2023; Ferrando, 2022; Ferrando et al., 2021; Okita et al., 2021, Jones, 2021; Shim et al., 2020) and currently no studies on non-binary people with endometriosis. The estimated prevalence of endometriosis in transgender men at 25% is higher than the prevalence rates in cis women (Okita et al., 2021). Chadha (2020, para. 1) shares “Our stories, faces and presence are missing from mainstream societal narratives” as she describes how marginalized groups, such as people who are “brown, black and/or transgender” narratives are lacking. The lack of inclusive language, limited studies and exclusion of gender diverse people in endometriosis literature may leave gender diverse people feeling excluded for a disease that may have a significant negative impact on their quality of life.

Gender diverse people have reported experiences of discrimination in health care settings (Grant et al., 2010; Hoffkling et al., 2017; Wall et al., 2023). They are reported to experience barriers to access basic healthcare due to discrimination (Moser & Devereux, 2019; Walch et al., 2021). Gender diverse individuals’ mental health and the quality of healthcare they receive is negatively impacted by their experience of discrimination, stigma and negative assumptions from HCP’s (Johnson et al., 2023). These individuals may experience limited access and resources for a disease that already, as experienced by cis women, has delays in diagnosis and a lack of support in diagnosis and treatment (Cox et al., 2003; Ghai et al., 2019; Huntington & Gilmour, 2005; Sinaii et al., 2008). Difficulties in accessing treatment for endometriosis and the discrimination that gender diverse people experience in healthcare settings may indicate that gender diverse people have additional barriers in accessing healthcare for endometriosis. These additional barriers highlight the need to explore the healthcare experiences of gender diverse people with endometriosis as they may negatively impact on the individual and their treatment.

Aim

Our aim in this article is to report on the healthcare experiences of transgender and non-binary people with endometriosis.

Methods

Participants

This study was approved through an ethics review committee. Purposeful and snowball sampling was used to recruit participants in this study. We recruited participants via social media by advertising the study online endometriosis and gender diverse support groups internationally from August 2021 to April 2022. Inclusion criteria specified that participants needed to identify as transgender and/or non-binary, have suspected endometriosis, be 18 years or older and be able to speak English. Anyone interested in learning more about the study were instructed to contact the first author for more information. Twenty-six individuals expressed interest in the study and were provided with details about the study such as the aim and ethical considerations. Eleven individuals completed consent forms and then participated in the study.

Data collection

Data was collected between January and December 2022 and consisted of three semi-structured interviews per participant that took place through Skype or Zoom for approximately 45–60 min each. Participants had the option to use their camera in the online interviews, of which eight chose to keep their camera on. Three interviews and a diary were used to collect data as this article is one objective of a study in which we are exploring the lived experience of transgender and non-binary people with endometriosis. The first interview focused on participants’ experience and journey of living with endometriosis. The second interview focused on participants’ experience of psychosocial support for their endometriosis and their experience of support and integration into the endometriosis community. The third interview focused on participants’ perceptions of healthcare in relation to their endometriosis. Most of the data for this article comes from the first and third interviews. Each participant completed a diary reflecting on their experience of living with endometriosis for three months. The purpose of the diary was to record the day to day experience of living with endometriosis as a gender diverse individual. Some diary entries are included in this article as participants reflected on experiences with HCPs. Participants were not remunerated for taking part in the study. After the interviews and diaries were completed, participants received a small gratuity of a $10 Amazon card.

Data analysis

We used Hermeneutic analysis to analyze the interviews and diaries. Patterson and Williams (2002) recommend a series of steps that we followed in the Hermeneutic analysis process. In step one we recorded the interviews and transcribed them while reflecting on our experience of the interviews and our reading of the diaries. The second step involved developing a referencing system in which we numbered lines throughout the transcriptions and diaries and we uploaded these to Atlas ti. In step three we read and reread transcripts, taking notes in a reflexive journal. The fourth step involved finding meaning units which Patterson and Williams (2002) describe as pieces of text that are comprehensible on their own. In step five we examined and reflected on these meaning units and developed themes. In step six we reflected on a number of themes and linked their interrelatedness with each other. We found this shifted from having a number of themes on the experience of healthcare to a specific focus on the experience of communication with HCPs. The seventh step involved writing up the findings and interpretation. It is critical to make use of the Hermeneutic Circle throughout this process in which we read and reread transcripts, reflected and made use of a reflexive journal, taking notes and applying ourselves to understand in relation to the theory of Merleau-Ponty’s Phenomenology of Perception and Being-in-the-World. This theory describes us as subjects not being separate from the world nor opposing the world but rather being a part of it; that our consciousness is being-in-the-world (Marshall, 2008; Merleau-Ponty & Landes, 2012).

Findings

From the data analysis process described above, the following themes were created that captured healthcare experiences: Medical Gaslighting of Endometriosis and Gender Diverse Experiences, Misgendering and Gendered Language, Medical Discrimination, and Validating Experiences with HCPs and Recommendations by Participants. The findings will be discussed under these themes.

Description of participants

The eleven participants that volunteered for this study resided in Canada, Norway, Australia, USA, New Zealand and Ireland. Two participants identified as transmasculine, two participants identified as transmasculine and non-binary and seven identified as non-binary. All of the participants reported that a gynecologist had diagnosed them with endometriosis with the majority having had diagnosis through a laparoscopy. The youngest participant was 21 years old and the eldest was 31 years old. The average age was 26 years old. Several participants had full or part-time employment, some were studying part-time and a couple were unemployed due to their endometriosis. A number of participants reported needing to change to part-time employment/studies because of how endometriosis affected their health. Pseudonyms were used in the write up of this study to ensure participants’ anonymity.

Medical gaslighting of endometriosis and gender diverse experiences

Medical gaslighting is described as a mental manipulation whereby HCPs dismiss a patient’s concerns and symptoms, which is more likely to occur with people with conditions such as endometriosis, with LGBT people and other minorities (Wise, 2022). In this theme, medical gaslighting is discussed in reference to (1) the experience of HCPs invalidating pain and gender, (2) the negative effects of medical gaslighting, (3) HCPs communication of treatment options, and (4) being blamed for endometriosis pain.

The experience of HCPs invalidating pain and gender

Most of the participants reported that they experienced gaslighting at the hands of HCPs. Participants shared that they were left feeling gaslit by HCPs when the HCPs invalidated their pain and symptoms, normalized pain, offered limited treatment options, focused on fertility instead of patient needs, invalidated their identity, refused them care and blamed their struggles with endometriosis on them not having children, the amount they exercised, their weight, inability to manage stress, their gender and their gender dysphoria. River, a 24 year old non-binary person from the USA shared their thoughts on medical gaslighting when they said,

Every single day there are women and non-binary people and trans men seeking help for chronic pain, and like you know this can be a life threatening condition. There’s doctors telling them that what they are experiencing is normal and that there is nothing wrong or that nothing can help them except birth control or invalidating their identity or telling them that they have to protect their uteruses at all cost because fertility is the most important thing.

Most of the participants reported that gaslighting related to pain by HCPs was one of the causes of delayed diagnosis. HCPs were reported to normalize and invalidate pain that resulted in patients not receiving the healthcare they needed. Jo, a 25 year old non-binary person from Ireland shared their experience of being dismissed and having pain normalized,

I went to see a doctor there, but they were extremely dismissive of me. She said, why would I assume that there was anything wrong with me, that painful periods were actually quite normal.

River shared how their pain was normalized and they had their gender dismissed by HCPs by being told, “You are a woman, this is what happens.”

Participants reported on their experiences of invalidation by HCPs by referring to these experiences as multi-layered in that not only were their endometriosis experiences dismissed, but their gender was invalidated as well. Remy, a 27 year old, non-binary person from Canada shared feeling that their gender was being erased,

I just feel that people don’t see it like having endometriosis and being trans or non-binary as valid as people who are women who have endometriosis. It’s kind of like obviously you have this disease so why can’t you just be okay with being called a woman?

In this quotation, Remy shared feeling invalidated as a non-binary person with endometriosis, and feeling as though their endometriosis would be accepted if they identified as a woman.

The negative effects of medical gaslighting

Medical gaslighting by HCPs may have a negative impact on patients as it can result in a trauma response, feelings of invalidation, and may limit health-seeking behavior. Many of the participants reported feeling invalidated and traumatized by HCPs. Ez, a 30 year old transmasculine/non-binary individual from Canada shared in their diary,

Medical PTSD is a serious issue within the endometriosis community that has not been addressed enough. Being told you are being a dramatic crazy B for bleeding and being in too much pain at 13 by medical professionals takes its toll.

Ez’s quote reveals years of being told their pain experience was not valid and that there was something wrong with them. They described their experience as traumatic. Similarly, Sawyer, a 31 year old non-binary person from Australia shared how years of pursuing treatment for their endometriosis and the invalidation they encountered had created a trauma response,

I wake up from having nightmares, usually about having medical trauma. So like this morning I woke up and I’d had these nightmares about going to the gynecological hospital where I’m having my surgery, and going to the emergency department, and I have these all the time. Going to their department and saying I really really need help.

Sawyer’s nightmares may reflect the trauma they experienced through the years of gaslighting and needing to advocate for their own treatment. Sawyer’s plea for help in the dream may indicate desperation to be heard. Participants shared having medical trauma from years of being invalidated and gaslit by HCPs.

A further negative effect of medical gaslighting is that it can impact on health-seeking behavior. Participants shared the further impact of medical gaslighting in that they related not feeling safe to share their gender identity with HCPs due to their previous experiences of medical gaslighting and being invalidated. Remy shared how they kept their gender identity from HCPs,

I generally don’t bring it [gender identity] up to medical professionals because there is just a list of other things I need addressed. I feel like having that experience with the first gynecologist who was just gaslighting me every second, that I didn’t want to give doctors another reason to dismiss my pain.

From Remy’s quote we can see that their previous experience of medical gaslighting from a gynecologist impacted on their engagement with HCPs as they felt compelled to conceal their identity from HCPs as they felt this concealment would result in having their pain validated. However, not being open with HCPs may limit communication and treatment. For some participants, medical gaslighting resulted in feelings of self-doubt and resistance to seeking healthcare. River shared how they suffered with symptoms for years and when a HCP expressed concern regarding blood tests, they did not want to go to a HCP due to previous experiences of being invalidated and gaslit,

I just said, it’s always been stress, I don’t want to see a doctor and have them tell me yet again, it’s just stress and I’ve wasted their time. So I continued to ignore it.

Sawyer, related needing to prepare themselves when they needed to go into hospital with endometriosis pain and they had thoughts of self-doubt due to previous medical gaslighting, “Um it’s like convincing myself that they’ll take me seriously if I go.”

Preparing for the fact that even if I do come out to them and say I only go by … whatever and that I am non-binary, prepare for the possibility that they will not honor that and, you know, I’ll go through that and they’ll reject it or not take it seriously and preparing for the impact of that when I’m really unwell in a stressful environment, it’s a lot.

Sawyer’s experience highlights the stress associated with managing endometriosis symptoms while preparing for possible invalidation of pain and gender. From Sawyer’s quote we can see that they may experience invalidation as a person and needing to deal with this as a potential outcome when they seek healthcare, while they are feeling unwell and in a stressed environment. This may reveal needing to manage multiple compounding stressors.

HCPs communication of treatment options

HCPs communication regarding treatment can leave patients feeling gaslit when treatment is being denied. Participants reported that HCPs made assumptions regarding treatment and offered patients limited treatment options. Several participants reported that being denied treatment left them feeling invalidated. Jru, a 29 year old transgender man from the USA shared that when he sought surgical treatment, a hysterectomy because of endometriosis, he was denied the referral because the HCP believed he was cheating the system and was trying to get gender affirming surgery. He was later validated by another surgeon who upon meeting him asked his name, pronouns, how he identified and discussed treatment options in relation to his endometriosis and gender. However, Jru experienced confusion when his surgical paperwork was processed as it stated that he had sex reassignment surgery when he in fact had a hysterectomy because of endometriosis. Jru reported that he has to explain this when he needs to have a medical examination and is left with uncertainty of how to address this. Jru’s experience may reflect feeling disempowered in the health system and it may be indicative of the negative effect HCPs assumptions can have as it may impact on the patient’s healthcare needs. Participants also reported that assumptions made by HCPs regarding treatment and providing limited options left them feeling unheard, disempowered and filled with self-doubt. Sage, a 21 year old transgender man shared how his HCP assumed what his treatment should be, thereby invalidating his life choices. Sage said,

Um in our first consultation he said, ‘oh okay you’re going to transition so you’re going to want a hysterectomy anyway.’ So he assumed that I wanted a hysterectomy. He assumed that I don’t want to be pregnant. That I don’t want to have kids, and for a lot of transgender men that just isn’t true.

From Sage’s quote we can see how assumptions made by HCPs may limit treatment options and communication with the patient.

Being blamed for endometriosis pain

Participants revealed feeling blamed for their endometriosis and experienced this as gaslighting. Participants reported several ways in which they were blamed. According to participants, HCPs blamed them for not managing their endometriosis, miscarriage when they had miscarried, their sexual practices, being a bad person, their mental health, their weight, their stress management, the amount they exercised, what they ate and their pain management. Some participants shared that they felt gaslit when HCPs diagnosed or labeled them with gender dysphoria. By blaming the patient, HCPs may take the focus off of the patient’s presenting problem, thus limiting treatment. For several participants, their endometriosis symptoms were blamed on their gender. Jru related that he was told that he could not manage his endometriosis pain because of gender dysphoria. He shared his perception of how medical gaslighting is multi-layered and has left him with self-doubt,

I think there is a lot more evidence that if you have endo you are probably gaslighted in some regard in the medical system, if you’re a woman with endo probably, cause you just have hysteria, right? Even though that’s not true. And then if you’re trans …, then I would not be surprised if they tag you with gender dysphoria first because they are trying to figure out your narrative vs hearing you first, at least that is my experience.

We can see from Jru’s quote how he has experienced gaslighting both with his endometriosis and his gender identity.

From participants’ reports, it is evident that medical gaslighting is omnipresent resulting in feelings of trauma, invalidation and self-doubt. Notably, these interactions impacted their health-seeking behavior, as they did not want to interact with HCPs out of fear of further gaslighting.

Misgendering and gendered language

Misgendering is a form of discrimination of gender diverse people in which the wrong gender is assigned when referring to pronouns, names and titles (McNamarah, 2020). Under this theme, we will discuss misgendering in relation to: (1) The effects of HCP assumptions, (2) HCP asking about gender and pronouns, (3) the negative impact of misgendering, and (4) coping with the effects of misgendering.

The effects of HCP assumptions

Participants reported that HCPs assumed that they were heteronormative and assumed that they were women when fem presenting, leading to frustration as they were misgendered. Ez opened up about discrimination they have experienced,

If I’m very fem I get better care. If I use a very fem voice or a calmer type thing, I get better care but if I use a deeper voice or I wear male clothing, um especially at the OBGYN there’s a lot of discrimination and they just assume you’re cis het, every gynae I have ever seen assumed I was cis het.

Ez’s experience highlights how HCPs may make assumptions around gender and sexuality that can limit communication around healthcare. Ez illustrates how patients may be treated differently by HCPs depending on how they present their gender, revealing discrimination within the healthcare setting. Remy shared that when they were not fem presenting they were assumed to be female and misgendered,

So I just naturally out of almost self-preservation just like usually don’t even mention it. I would think that it looks kind of obvious. I have a shaved head. I wear more masculine kind of clothing.

From Remy’s quote we can see how they felt they need to protect themselves by concealing their gender identity. A number of participants related experiences similar to Remy, and stated that it was daunting to share their gender identity with HCPs and revealed that they tended to rather focus on reporting their endometriosis symptoms to HCPs to get their healthcare needs addressed.

HCP asking about gender and pronouns

Participants shared that HCPs did not ask about gender and used the incorrect pronouns. Crow, a 31 year old non-binary individual from Canada shared how they have sat through appointments when the incorrect pronouns and gendered language was used, “You just kind of have to sit through it and deal with the yucky feelings later.”

This quote may reveal how HCPs’ incorrect use of pronouns left Crow to manage their feelings after the appointment and that they could not address the HCP on their misgendering. Daniel, a 21 year old transmasculine, non-binary person from Norway shared how he did not like it when HCPs only used his name all the time to avoid using his pronouns. HCPs saw Daniel’s masculine name but did not ask his gender. He however preferred this rather than having HCPs pushing their beliefs on him. Daniel said that he felt at least HCPs were trying. However Daniel said he would prefer,

Well I dislike people who use the name all the time so maybe something in the middle if they can’t use she and he pronouns then they can use they/them. It shouldn’t be hard.

From Daniel’s quote we can perceive how his experience of HCPs not using his pronouns or name was invalidating of his identity. Daniel seemed to be understanding of HCPs trying to not misgender him, however them ignoring gender is not validating. This may indicate how further training and awareness of gender diversity for HCPs may help HCPs in how to use names and pronouns. HCPs validation of gender and the correct use of pronouns and language can aid in validating the patient.

Onyx, a 21 year old gender queer individual from New Zealand reported a positive experience when a doctor asked them their preferred pronouns,

First of all she asked me my preferred name and pronouns, which was very helpful, and also took that into consideration for my long term treatment which was really quite amazing. I have had those conversations with previous gynecologists in the past and they have always kind of pushed back.

Onyx’s experience illustrates how the validation of gender by HCPs can result in gender being included in the treatment of endometriosis. Onyx seemed to find validation from the HCP helpful after their previous negative experience of their gender being invalidated.

The negative impact of misgendering

Misgendering is reported to have a negative impact on both patients’ mental and physical health, impacting on future medical care (Dolan et al., 2020). Participants reported that misgendering resulted in a trauma response, dysphoria, isolation and had a negative effect on their mental health. Sage shared how misgendering affected him and lead him to feeling gaslit,

It’s almost like someone has punched you in the gut. There’s no pain, no physical pain but it’s oaa, it makes you feel really sick and almost like winded, woozy kind of feeling. And sometimes it creates, if it’s happened so much in one kind of day it creates this kind of … but when you’re second guessing yourself like, oh am I really trans? I mean I have this body but yeh trans doesn’t mean that, it’s not about that. You’re a transgender man, you have this dysphoria, but you’re a transgender man it doesn’t matter what your anatomy is its just people disregarding you and misgendering you.

Sage revealed that he needed to work through second guessing himself after HCPs misgendered and disregarded him. In addition, Sage’s experience of being misgendered by HCPs may reveal the psychological effect that misgendering can have. Participants shared how being misgendered resulted in feelings of loneliness, isolation and being scared, as revealed by Jo,

I just don’t understand why they [HCPs] use it [incorrect gender labels]. It’s really a lonely, isolating and kind of a scary experience.

Jo seemed to question why HCPs would use misgendering as it causes such a negative effect on them. Sage further shared that being misgendered resulted in feelings of isolation and loneliness,

Being misgendered constantly is just, it’s just really frustrating. It makes you feel really really alone. Because I was alone I don’t feel safe and confident enough to speak up to a doctor.

From Sage’s experience we can see that misgendering left him feeling alone and feeling not safe to communicate openly about his healthcare needs with the HCP. Misgendering can therefore result in the patient feeling silenced and unable to advocate for themselves and their treatment. This effect may limit communication between HCP and patient and act as a barrier to effective treatment. Similarly, Sawyer shared how they felt silenced after a HCP misgendered them and how this prevented them from communicating their treatment needs to the HCP. Sawyer described an experience in which they told the HCP that they were non-binary however the HCP continued to misgender them. Sawyer said,

She just didn’t care and just kept saying all these things that just hurt me so much and caused me to disassociate and so I didn’t really advocate for my hysterectomy that appointment.

Coping with the effects of misgendering

Participants reported that they braced themselves for misgendering in the healthcare context, sometimes preparing themselves for days for appointments with different coping strategies such as a Dialectical Behavioral Therapy skill of Coping Ahead, a therapeutic skill to manage emotions when facing emotionally triggering situations (Linehan, 2014), or taking detailed notes or a supportive person to appointments. Sawyer shared how they used Coping Ahead to prepare themselves when they need to go to the hospital,

So it’s like what am I going to do if this happens or that happens? So that I will be able to cope when I’m there if something really bad goes wrong, like that time that really traumatized me… and preparing myself to talk about gender stuff, preparing myself to deal with them calling me by my legal name, referring to me as a woman and referring me as she/her just preparing for a lot of misgendering and misnaming.

Sawyer’s use of Coping Ahead and other participants use of mental preparations may reveal the anxiety and stress of interactions in healthcare settings that are invalidating in one’s gender. Sage shared how he brought his partner with him to manage the misgendering from HCPs,

I know that he genders me correctly and he sees me as a man and it just makes me feel safe knowing there’s someone to back me up even if the doctors keep misgendering me. He is there and he supports me.

From Sage’s experience we can observe how he needed support with attending appointments because of the negative experience of HCPs misgendering has had on him. Remy shared how their friends give support and how this was helpful,

They send me non-binary memes, you know we make jokes and things like that so that it makes me feel that I have a good place to come back to after having a bad medical appointment and being misgendered.

Remy and Sawyer’s quotes may reveal the negative experience of misgendering and how coping skills and support was needed to cope with misgendering by HCPs.

The medical care, endometriosis and being misgendered may result in medical trauma taking a toll on the patient. Sawyer shared the effect of repeated misgendering,

You’re always around it, you’re always getting exposed to that kind of language and misgendering, it takes a toll. So, it’s like I have medical trauma from just having medical problems and being trans.

From Sawyer’s quote and the above reported participants’ accounts of misgendering, we can observe how misgendering can be a further barrier for gender diverse people to manage in their interactions with HCPs in their treatment of endometriosis.

Medical discrimination

Under this theme participants’ reports of discrimination in medical care are discussed in relation to: (1) Experiences of discrimination from HCPs, (2) fear of discrimination leads to masking of gender, and (3) gendered medical settings.

Experiences of discrimination from HCPs

Participants reported accounts of discrimination from HCPs after disclosing their gender identity. Ez shared in their diary feeling discriminated by HCPs after sharing their gender identity and how this affected their care,

I was on a first name basis with many of the medical practitioners at this ER. I have severe frequent pain episodes from endo and ovarian cyst. I told them my name is … recently and they went, ‘Oh’ and walked away smirking and now they basically refuse to talk to me.

From Ez’s experience we can see how after they shared their gender identity by sharing their name with a HCP, they were treated differently by HCPs and refused care. Jru shared his overt experience of refusal of care,

I’ve had people refuse to touch me or examine me whatever or scream in my face say I don’t belong there, and I was crying blatantly and they’re still there screaming at me.

From Jru’s experience we can see the absolute refusal of care and discrimination by HCPs resulted in a traumatizing experience. From participants’ reports, gender diverse people with endometriosis are treated differently by HCPs. Crow reflected on how gender diverse people with endometriosis are treated as if they are invisible,

Like we don’t exist or like we’re just weird women. Or like we are just women and it’s like somehow getting the even shorter end of the patriarchy stick as per say.

Crow’s reflection may describe how women and gender diverse people with endometriosis are not heard in the health system and how they perceive that gender diverse people with endometriosis don’t exist to HCPs. Crow seemed to share that their gender identity was erased by HCPs and that they were treated as though they are a woman.

Fear of discrimination leads to masking of gender

Participants revealed a fear of discrimination from HCPs. Sage shared that he feared discrimination from HCPs because of an experience of discrimination from a HCP in the past, “I do always fear it [seeking medical help] because I know it happens.”

Participants shared feeling unsafe and that they felt they needed to mask their gender to receive health care. Ez shared,

I am non-binary, transmasculine, but I have been forced to live my life as female cis het out of safety…I have learnt that it is safer to use a much more fem voice, to dress more fem and to bring a man with me to appointments so that I am trusted the first time because the average doctor does not trust women and especially queer people when it comes to reproductive pain.

Ez’s experience reveals a discriminatory healthcare system where they did not feel safe to share their gender identity due to previous experiences of discrimination by HCPs. Ez also described discrimination of women and gender diverse people with endometriosis and how they are not heard or validated by HCPs. Crow reported needing to mask their identity to receive treatment and be heard by HCPs,

So it’s like a lot of the times we’re forced to mask as like, ‘Oh yes hello I am a cis gender human being. Aha yes hello I, I am a heterosexual. Yes, I am. Yes, hello me a woman? Yes,’ in order to be listened to at all. When you’re talking to people and they can’t even understand it as a quote women’s unquote issue, how do you expect to handle your gender identity with any semblance of competence?

From Crow’s quote we can see how they felt forced to mask their gender identity from HCPs so that HCPs would listen to them. These quotes also reveal a complexity of living with endometriosis as a gender diverse person as endometriosis is often not a priority in healthcare and gender diverse people have additional barriers.

Gendered medical settings

From participants’ accounts, medical settings can be discriminatory in that treatment often occurs in gendered environments which can leave the person feeling discriminated against and excluded. Onyx shared, “I have to attend women’s health for my appointments which is not where I belong, but that is where the service is run.” Onyx described how they had to attend a healthcare setting where they did not feel they belonged, due to the gendered nature of the service. They were left without a choice in this regard and therefore need to manage feelings of exclusion. Similarly, Jo described the lack of inclusive medical settings and how this affected them, “It’s hard when the only people who are kind of treating it are gynecologists or who are working out of women’s clinics.”

Participants shared how medical intake forms are not inclusive. Crow said, “Even on most intake forms, there is no option for non-binary, there’s nowhere to put your pronouns, you’re just a woman.” Crow’s quote may reveal how not having gender inclusive intake forms can leave gender diverse people feeling excluded from the medical setting and that there is no space for them.

Jru shared that by attending a women’s medical center, gender diverse people are forced to out themselves,

If you are in an OBGYN setting or a women’s health building which is where I go to a women’s health clinic, as a trans guy you are outing yourself in public because why would you be there to begin with.

Jru’s quote may reveal a barrier for gender diverse people in attending gendered medical settings as patients are forced to out themselves, which they may not want to or feel safe to do so. As revealed previously from participants’ accounts, disclosing gender is a possible stressor in addition to experiencing stressors related to endometriosis care.

Validating experiences with HCPs and recommendations by participants

While most of this paper described negative healthcare experiences, some positive experiences were also reported. In this theme we discuss how some patients’ experiences were validated by HCPs and recommendations made by participants regarding healthcare.

Validating experiences with HCPs

Participants stated that it was important to feel that HCPs listened to them and were hearing their perspectives as this validated their experiences. HCPs listening, asking questions, being gender inclusive and taking time to explain treatment options left participants feeling validated and with a way forward in their endometriosis care. A number of participants shared what a difference a HCP can make when they are validated after years of invalidating experiences. Jru shared after not being heard by HCPs for years,

She started to ask me certain questions, like do I have bowel issues and things like that, how are the periods going? She was, ‘I think you have endometriosis.’ I’m like, ‘thank you,’ cause with her I just decided I’m not going to say anything., I’m tired of trying to not convince, but share my story and to be told, no. So she came up with that on her own and I was really relieved and then from then on it felt more validating.

From Jru’s quote we can observe the possible validating impact that the HCP had by asking the patient questions, hearing and validating his experience. This was significantly meaningful after years of not feeling heard. Onyx shared a positive experience with a HCP that used inclusive language and provided information on treatment. They said,

The doctor that I saw recently was very good actually, explaining everything and making sure I understood everything in terms of the treatment and the options I had. She was also very good with my gender, and making sure that, like first of all she asked me my preferred name and pronouns, which was very helpful, also took that into consideration for my long-term treatment which was really quite amazing. I have had those conversations with previous gynecologists in the past and they have always kind of pushed back.

Onyx’s experience may reveal how a HCP listening, taking the time to discuss the treatment of endometriosis and by practicing inclusively may aid the treatment and validation of the patient. This may have left Onyx feeling respected and with a way forward. Similarly, Jo reflected in their diary, leaving an appointment feeling happy and relieved after being validated by their HCP and the positive impact of HCPs not having assumptions nor misgendering had on them,

I really appreciated the fact that when it came to my check-up the doctor used zero gendered language. Even when asking about my sex life she didn’t assume the gender of my partner or assume I was having penis-in-vulva sex. I felt very comfortable.

Jo’s quote may indicate how HCPs being inclusive, validating, not using gendered language and not making assumptions can make a difference to the patient’s care.

Jru shared how HCPs being supportive with his endometriosis and gender had a large impact on the quality of his healthcare, “But sometimes it takes one person supporting you in your corner cause after meeting this specific provider so many doors opened to me through her care.” From Jru’s experience we can see how a collaborative relationship between HCP and patient can result in further options for treatment and treatment pathways. It is plausible that medical care where the patient feels heard, validated and affirmed in their gender may assist in developing a collaborative treatment plan for the wellbeing of the patient.

Recommendations made by participants

Participants provided several recommendations to improve their healthcare experiences. Participants said that HCPs need more awareness of endometriosis, in general and among gender diverse patients, and that endometriosis needs more of a focus in healthcare, with more screening to diagnose the condition. Participants shared that it was important to have holistic care and communication between themselves and HCPs regarding endometriosis and gender affirming care. They stated that communication essential. With regards to communication Remy suggested that HCPs, “Maybe just talk to people about who they are as a person.” Remy’s quote may highlight the importance of HCPs learning about their patients and their context and the importance of building rapport. All of the participants discussed the value of a HCP listening to the patient and feeling heard by the HCP. Daniel recommended, “They should be, ‘I can hear what you are saying, I respect it and I’m here to try and help you’.” Daniel emphasized the importance of patients feeling heard and respected by the HCP. Validating a patient when they do open up about gender and validating their pain may help patients to feel heard. Sawyer proposed,

I mean believe them [the patient] is the first thing, believe them and validate them and especially like if they have come out to you, their gender, like understand that that is a big deal.

Sawyer shared how it is not easy to share their gender with HCPs and that validation is important when they do. Providing a safe place for patients and having checks in place to see if they feel comfortable is important. It may be helpful if medical settings do not make use of gendered images and language and if intake forms are inclusive. Remy shared the importance of HCPs not using gendered language and for the HCP to ask the patient’s name and pronouns.

I think definitely throwing any gendered language that you think you should be using just in general, just throw it out, you don’t need it.

I think that asking people how they would like to be called, asking them what pronouns they would like to be used.

Participants recommended respecting autonomy in medical decisions, Crow said,

Somebody does not come to that conclusion lightly ever. It’s not like somebody wakes up one day and like, you know what sounds nice, getting my organs ripped out. I think I will do that. And it’s like whether it’s for gender reasons or not like it’s a road to get there and it is like for the betterment for that person and that matters. It helps us to be more at home in our bodies and walk through the world as our authentic selves, and that matters!

From Crow’s quote we can observe how they have thought through medical choices in their life and that they need their autonomy to be respected by HCPs as these decisions help them to be ‘at home’ in their body. Participants supported education and training for HCPs on gender diversity. Onyx supported further training for HCPs on gender diversity, “There is so little awareness of their existence particularly in gynecology and women’s health.” Crow supported this as did other participants,

Staff and doctors should have at least sensitivity training and LGBTIQA + competency training. From there it’s easy to not misgendering people, not basically forcing people to mask and gender themselves to receive healthcare.

These two quotes may reflect participants’ perception that HCPs seemed to lack knowledge on gender diversity and how training may be beneficial in them feeling safe to disclose their gender and not be misgendered by HCPs.

Discussion

Phenomenology of Embodiment will be used in our discussion of participants’ perception of the healthcare they have received in relation to their endometriosis. This theory has been described as valuable in gender diverse studies with a focus on embodiment which is not only about the body, as it additionally emphasizes the lived experience of how one feels and lives within one’s body (Salamon, 2014). According to Merleau-Ponty and Landes (2012) our bodies, our minds and the world are linked rather than being separate from each other. The “body is the vehicle for being in the world” and is not only a biological system but also a social system for relating in the world with others (Merleau-Ponty and Landes, 2012, p. 84). In the themes described above, participants’ experiences were shared through themes of Medical Gaslighting, Misgendering and Gendered Language, Medical Discrimination and Validating Experiences with HCPs and Recommendations by Participants. The findings revealed that participants experienced barriers in receiving healthcare and in HCP communication. From participants’ experiences, these barriers appeared to be layered in that endometriosis is reported as by cis women’s experiences as a disease that is not given priority in healthcare (Cox et al., 2003; Ghai et al., 2019; Huntington & Gilmour, 2005; Sinaii et al., 2008). Participants reported having their experiences of pain and living with this disease gaslit by HCPs. Participants reported a further layer to this however in that they reported how discrimination regarding their gender acts as an additional barrier in their experience of receiving healthcare. Participants reports of discrimination were revealed in the themes through accounts of having one’s gender gaslit and ignored, being misgendered and having gendered language used inappropriately by HCPs, being refused healthcare, and having fear due to past discrimination in health care settings. These reports of discrimination seemed to have a negative effect in that they silenced and created a trauma response. Participants reported feelings of fear, being silenced, self-doubt, dysphoria and a trauma response to these discriminatory HCP communications. Our relationship with others impacts on us, our perception of ourselves and further relating with the world, as described by Merleau-Ponty and Landes (2012, p. 431), “ultimately, the subject that I am, understood concretely, is inseparable from this particular body and from this particular world.” This theory aids in our understanding of how the reported discriminatory interaction participants experienced with HCPs impacted on them in relation to their health management of endometriosis and being-in-the-world as a gender diverse person. Freedom is a core chapter in Phenomenology of Perception in which Merleau-Ponty described how although the world is already constituted it is also never completely so and that we are acted on by the world but also that we are open to other potentials (Marshall, 2008; Merleau-Ponty & Landes, 2012). This may account for participants positive experiences of HCP communication and how participants’ recommendations to HCPs may be helpful to influence change and foster inclusivity.

Limitations

Limitations of this study are that that this is a qualitative study and had a small data set. Participants were recruited internationally and it may be more beneficial to have country specific data due to sociopolitical contextual differences to inform recommendations in endometriosis care. This study was advertised and conducted online which may have limited access for participants without online resources. This research was self-funded and did not offer remuneration to participants which may have aided in participants volunteering for the study. Whilst recruiting for this study, people shared their struggles with receiving a diagnosis of endometriosis. We adjusted the criteria for inclusion to include participants with suspected endometriosis. There are a number of gender diverse people struggling with symptoms of endometriosis without a diagnosis and their experiences may be missing from research. HCPs experience is missing from this article and it may be beneficial to explore their perceptions or experience of providing health care to gender diverse people with endometriosis.

Conclusion

This study on transgender and non-binary people with endometriosis perception of healthcare has revealed experiences of medical gaslighting, misgendering as a form of discrimination and discrimination in receiving health care for their endometriosis. These experiences had a negative impact on participants, leaving them with feelings of being traumatized, being silenced, feeling isolated, and feelings of self-doubt and fear. These affects, from participants’ reports, created further communication problems with HCPs, adding additional barriers to receiving healthcare. Medical gaslighting, misgendering and discrimination may affect both the patient and the patients’ healthcare negatively. Participants reported validating experiences that they had with HCPs. These communications revealed the significant difference that validation and really listening to a patient may make to the patient and to their healthcare. Participants made a number of recommendations for HCPs who treat gender diverse people with endometriosis. All participants recommended listening was critical. We recommend that HCPs may benefit from training and awareness of gender diversity. HCPs may also benefit from awareness of the impact that misgendering, using gendered language and their communication may have on patients. For further research, it may be helpful to understand the HCPs point of view of what they experience in providing care to gender diverse people with endometriosis as their voice and perception is not included in this study. A few participants recommended this research as well. We end this article with the words of Crow that highlight the need for more inclusive care, “All bodies matter… this has to go better for people in the future, it has to.”

Funding Statement

The author(s) reported there is no funding associated with the work featured in this article.

Disclosure statement

No potential conflict of interest was reported by the author(s).