Endometriosis is often a very misunderstood, and under diagnosed disease affecting a significant population of women. It is typically classified as a gynaecological condition affecting the organs of the female reproductive system, or pelvic region. There are, of course, manifestations of the disease that can appear in other areas of the body, and do not have to correlate with the pelvic region, though endometriosis is most commonly referred to as a female disease. There is a significant body of research exploring women with endometriosis, and their lived experiences, as well as how to treat women with endo, from a medical perspective. But what happens if the person with endometriosis is not a woman?
There are documented cases of cis men (cis meaning someone who identifies with the sex they were assigned at birth) who present with endometriosis of the prostate that is typically discovered when their body is introduced to estrogenic effects. I am sure there are also other ways and forms endo can manifest itself in the male sexed body, but the research at this point in time is simply not extensive enough for me to comment as fully as I would like to about the number of cis men affected by the disease.
Outside of the binary world of cis men and cis women affected by endometriosis, there is a population of trans men (and trans women) who face living with endometriosis everyday whose experience with the disease goes un-researched, and essentially erased from the endometriosis community as a whole. (Trans meaning someone whose gender identity does not match the sex they were assigned at birth).
I do not wish to take away from the experiences of women with this disease who do suffer a great deal in gaining access to proper medical treatment, and support systems, however, I believe it to be equally important to expose the reality of what it means to navigate a gendered disease when one does not belong to such a binary system.
I have been living with and navigating endometriosis for thirteen years. It took eleven years, and two surgeries before I received a diagnosis. If one were to look at my endo journey, this would not seem out of the ordinary, except that I am not a woman. I am a trans person navigating this highly gendered condition.
It is difficult to approach this topic in a community that has historically expressed a very female-centric ideology, leaving very little room to create a non-gendered and more inclusive approach to a disease that affects bodies alone. I cannot speak for all trans men, as each and every single person, regardless of gender identity, is going to have a unique experience with endometriosis. This does not mean that there cannot be overlap in symptoms, or experiences across any gender with the disease.
My overall experience, of gaining a diagnosis is not very dissimilar to that of most woman identified persons who go through endless test, and re-test, who are asked invasive questions, and forced options of pregnancy, hysterectomy, or intensely potent pharmaceuticals. Where my experience varies is in how each of these processes has affected my navigation and decision making with endometriosis. One of the largest difficulties I have encountered is, in gaining access to treatments based on my specific needs and wants for my own body. During my diagnostic phase, I hid from my practitioners my trans identity because I was afraid of not being able to gain access to appropriate care or treatment. As it was, I was already having difficulty navigating questions posed around sexual activity, as my experiences have not correlated with the simplistic set of questions around penetration from having a cis male partner.
In every single exam or ultrasound appointment I endured long conversations around my potentially being sexually abused, because I was so uncomfortable with receiving pelvic exams and transvaginal ultrasounds that I would fight back tears as the medical professionals forced their instruments upon my body. Every physical exam was an invasion that I knew needed to happen, but did not belong to my body.
In the past, I had been offered a hysterectomy, simply because doctors thought that would be an easier solution to relieving my pain. I have received questions from a lot of people I know as to why I don’t just go with this option if I am trans anyway. The simple truth is that I want to be able to maintain my fertility, just as anyone else who would like the possibility of children in the future. Being a trans person does not mean that I do not want kids, or that my desire for children is somehow less important.
Now that my practitioners are aware of my gender identity, and I am navigating new levels of difficulty in my disease, I am facing a new set of challenges and barriers to access. All of a sudden, a simple change in my identity on their chart has them questioning the legitimacy of my requests. What was previously an open invitation to receive a hysterectomy is now being scrutinized as something that I am potentially abusing the medical system for as part of my gender identity, and not my long struggle with endometriosis, and the physical, mental, and emotional anguish I have experienced as a result. My decisions around which pharmaceuticals I wish to use, if any, has been met with great debate, and I have had practitioners state to me directly that they do not wish to include on my referrals that I am trans, as they fear it will affect my treatment outcomes.
In a lot of ways I am extremely lucky to be able to work with the practitioners who are currently supporting me in my health, though it was a large struggle to find appropriate practitioners. While I hid my identity for a large portion of my struggle in receiving a diagnosis, not everyone is quite so lucky to fly below the radar in receiving initial treatment. There is a documentary about a trans man with ovarian cancer, called ‘Southern Comfort’ which documents well, the very real struggle of some men to accessing treatment in a specifically female identified space, such as a gynaecological office, or ultrasound clinic.
Gaining support has been an extremely important and significant portion of my ability to live with and navigate endo. Although I know that I am welcome at my local support group, I often feel very isolated in my experiences. A large body of the endometriosis community likes to refer to each other as ladies, girls, or endosisters, which to someone such as myself is highly exclusionary. I know that I am in the minority of people with endometriosis who do not identify with these terms, but this does not mean that I am not worth including, or that my experience with the disease is not important.
I think it can be problematic to attach a gender to any disease, as gender is so complexly related to social constructions and systems of oppression, power, and control. Diseases do not know the boundaries of social constructions. Just as endometriosis was once thought of as a white, career woman’s disease, we know very well that endometriosis does not discriminate among class, or racial structures, and I cannot see how gender is any different.
Many people who do not fit within the confines of a set definition can become easily isolated, marginalized, stigmatized, and discriminated against. In a community of people who all suffer a great deal from a very debilitating condition, it is disheartening to learn that one can be further marginalized within this group, as someone who is ‘othered’, oftentimes in very unintentional ways.
Inclusivity and barrier free access to support and information will benefit everyone who faces endometriosis in any facet of their life. Exclusionary actions create a weaker community, and can also lead to overlooking important aspects of disease-based research.
It is my hope, in moving forward with endometriosis awareness that all people affected by the disease have representation, and are not excluded by invisible lines.
It has been just over four years since I wrote my very first piece about being trans and living with endometriosis. Since then there has been an increase in public awareness about trans people. Conversations about trans inclusion have been taking place across North America, and within Canada there are now federal protections for gender identity and gender expression. So what’s changed, and how is my care now since these changes have taken place?
- Gynecologic care of the female-to-male transgender man.
- Trans men’s Health is a “Women’s Health” Issue: Expanding the Boundaries of Sexual & Reproductive Health Care
- Breaking through the binary: Gender explained using continuums
- TRANS FACT SHEET – simple language
- The Trans PULSE Project is a community-based research (CBR) project that is investigating the impact of social exclusion and discrimination on the health of trans people in Ontario, Canada.
- Trans Health Connection Resource Database
- Genderpalooza! A Sex & Gender Primer
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