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.
Update
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?
Navigating Endometriosis from a Trans Perspective 2018
Further Reading
- 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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I’m trans and have a lot of symptoms of endometriosis and I’m really scared reading this. I hope so much that I don’t have it but this morning I woke to lower back/pelvic pain and vomiting and before I had just put off a lot of my symptoms to natural variation (heavy bleeding) or maybe benign ovarian cyst (cramps outside of menstruation) but now I’m really scared if what might happen if it turns out I have it :'( hopefully this is a stomach bug…
THANK YOU! As a cis-het alternative practitioner specialising in hormonal issues that are automatically gendered in the medical literature i’m struggling to find information that will help me understand a large number of the population. Your blog has really helped me to start understanding what transpeople are dealing with in such a gendered environment. Onwards and upwards toward an inclusive practice.
I googled this and came across your piece, because I thought – how do the trans community navigate with endo…as it’s difficult enough having endometriosis being the typical woman with a cis male partner… And I made an Instagram to create an open and supportive Instagram but the name was mainly aimed at vaginas… I really make the effort to ensure that I don’t exclude none binary/trans people in other parts of my life because it’s very much a part of my life and friends / family but this particular disease I didn’t think to. And I feel really bad about it. The brand is all set up now and I’m horrified that I could be excluding trans people struggling with endo and it has made me really sad. Have you got any advice for me on what to say/do to make sure I am welcoming trans / none binary people with endo? Thanks. Emma x
I’m trans and have endo too, thank you for telling this story. I’m trying to figure out a way to treat it right now that doesnt include female birth control. I have v penetrative sex with my boyfriend, and I want a low risk of being pregnant and something that helps the pain of endometriosis. I don’t really want extreme painkillers, and I feel like I’m out of options. Testosterone apparently, doesn’t actually stop the risk of pregnancy..
I have other pelvic problems that have required transv*ginal ultrasounds and exams over the last year. I have had so many of these exams that I have begun to have more anxiety about them, and if they are performed carelessly, sexual trauma. I have an upcoming appointment this week and I feel I might not be able to go. I don’t think anyone has tried to be sensitive to my needs as a nonbinary trans male. I have never had anyone ask how they could be more sensitive to me or make the experience better. The tech calls me “hon” and I think that indicates she sees me as a girl. I am afraid to come out to the technician for fear of her treating me less well or acting strangely, which would increase my dysphoria. If you can respond quickly I would appreciate it very much. Thank you.
Hi Dylan,
I am really sorry to hear about your experiences with receiving healthcare. I am wondering what country you are in, and if perhaps you have been able to connect with any local support to help you in finding appropriate Trans healthcare. It can certainly be really stressful to find, and maybe not the most ideal to have to have any exams in the first place, but you and your health are still really important regardless of what organs you have, and there are definitely some really great health care practitioners out there. I wrote this piece a few years ago, and while the landscape for Trans healthcare is still quite varied, there seems to be more conversations happening about it.
Luke you’re not alone… you will be surprised learning that the same thing may even happen the other way around…
I’m a girl born with the wrong genitals, on HRT since 16, and after gender correction surgery since 19.
Always suffering pelvic pain in a short time since I started my HRT, always misdiagnosed with bullshit.
Tons of exams, tests, a total time and money wastage. Tons of specialists seen.
I’ve been suffering all this since 15 years more or less.
Just recently I could self diagnose with endometriosis, after having read several scientific papers.
I had to implore my surgeon to undergo laparoscopy. And I was right.
Well, I’m pretty the only case on this planet of a m2f patient suffering endometriosis.
The only solution for me, to date, is keeping a very low estrogen dosage and balancing with a progestogen.
Would you be interested in sharing your story in a blog post? I am certain this is more common than we recognize. With the long term use of HRT, I suspect there are other health issues that should be brought out as well. This could help many who suffer similarly. If you’re interested, please send us a note via: http://www.hormonesmatter.com/write-for-hormones-matter/
Miriam, thanks for sharing your story. I think it is so incredibly important that everyone with ends has the space to talk about it. Otherwise we are not getting the full picture of the disease, but only a snapshot of one segment of the population that can be affected. I am sorry you have had such a struggle though. there is information posted by someone else in the comments about a Facebook group. If you would like to connect with others along the gender spectrum with endo, it is a great place to connect.
Thanks for sharing Miriam,
I am MtF (post colo vag) and was looking on Google trying to get an explanation for some things that I have been experiencing for a while now.
For 6+ months I have bled a small amount on cycle. I understand this should not be possible, and thought maybe it’s just a coincidence (but every cycle?). Sometimes I have washed before bed and woke with blood, so don’t think it can be injury.
The blood is dark and usually in little bubble shaped or stingy.
I never tied the connection until reading today, but I have been feeling really sick pretty often for no apparent reason and also having really extreme constipation. The stomach cramps had also been really hurting much more, but not in the normal way, painful back and kind of inside somewhere.
I was looking for some type of explanation, and now are getting worried.
My doctor has not been any help, and admits he has no experience with trans issues.
thanks for the important article. Check out Rainbow Endo Support on Facebook.
Hi Fox,
I started a group on Facebook called “All Bodies’ Endometriosis”. I started it because I wanted a forum for people who don’t like the heteronormative settings that most of these self-care support groups are in.
I’d ask you to join! And anyone else who’s interested.
It’s brand new and needs to grow!
Juli
Hi Kelsey,
I just sent you an email, but a few inclusive terms could include: EndoWarrior, EndoFamily, Folks with Endo, EnduringEndo. Some of the gendered tags I often see could easily be substituted for one of these terms. I think being inclusive provides a really great opportunity to be creative, and generate something new. Also, having inclusive tags means that a sense of cohesion is created within the community, which can lead to a stronger force in terms of social media use, and public awareness.
Fox, I’ve been designing T-Shirts for Endometriosis awareness…what are your thoughts on something along the lines of “I <3 my EndoSisters and my EndoBrothers" Is there something that would be more inclusive? Chandler has my contact info, if you'd like to chat about it.
Thank you so much for sharing your story. This is one that I think we all need to be aware of, and one that deserves to be shared widely! Thank you for teaching me more about inclusion. Please keep sharing your voice!
I dont think i could [or would even want to] stop using the term “endosisters” to acknowledge and honor the amazing women i have met along my journey in this disease who are much more than friends… they have earned a place in my heart as sisters <3 I could, however, include "endobrothers" into my vocabulary, which i would happily do if you or any other trans or cis male were to join any endo support group im so blessed to be a part of. I went through all seven of my surgeries before even knowing such support existed… it was miserable and so isolating, and i would never wish that on anyone. Im sure that many of my sisters would agree with me on that. I think if you give people a chance, they would rise to the occasion. We all need that support <3
Your story is incredibly well phrased and so important. Please consider joining the efforts of the Million Women March for Endometriosis. I know that the name alone presents an obstacle for the awareness you are trying to raise regarding the difficulties of “other” populations that are dealing with this horrendous disease; I can only hope to assure you that ALL voices and perspectives are important to and respected by this campaign. I will support 100% a request to re name the campaign, though it may not take effect until after the march. Everyone affected by endo deserves to be heard.
Hey, great article! Thanks for sharing your experiences.
I also have endometriosis and I’m queer and frustrated with always reading about it being a so-called “woman’s illness” and all the resources being “women-to-women” blah blah.
I wrote a little blog myself about my experiences here, and linked to your blog, if you don’t mind:
http://www.englishyogaberlin.com/endometriosis-and-a-personal-approach-to-healing/
Cheers! Juli
I don’t think we can expect health-care workers to coddle us, but we can expect them to be sensitive to our needs, and compassionate. Some gynecological health care providers ask about history of sexual trauma specifically so that they can provide sensitive care to people who have experienced this.
I didn’t think the article was complaining and asking for coddling. Rather, it was describing one person’s experience, and raising awareness about some issues that transgendered people face when navigating a disease that is generally intimately tied with gender.I thought it was an interesting article and raised some points I had never thought about before.
Pumpkin, I am sorry for your difficult experiences and your suffering. I have also had multiple miscarriages (my story of recurrent miscarriage is on this site) and I remember well the days that seeing every pregnant woman felt like a slap in the face. Yes, I had to live in the world, but I think it was perfectly legitimate and understandable to feel upset about those very visible reminders of what I wanted so badly and couldn’t have.
Thank-you to all who contributed to create conversation around this topic. I very much appreciate the time you took to read this article, and the consideration and support you offered in your comments. I very much hope this conversation continues as endometriosis efforts continue to move forward worldwide.
I was raped by a 300 pound linebacker when I was a 14 year old girl. Worst day of my life. I cringe whenever I have to spread my legs so yet another strange healthcare worker can cram a device up my vagina. It sucks. But there is no getting around it. It is part of getting care for my endometriosis, and I cannot expect healthcare workers to coddle me.
After five miscarriages and no children to show for it, and a failed marriage because of it, I had a full hysterectomy in my 30s for Adeno and Endo, which killed my dreams of having a family. Every time I go to the gyne’s office I will see lots of pregnant women, babies and happily married couples cooing over their little miracles. It is something I learn to deal with. I cannot expect the doctor to make special child-less hours for me.
In other words, I cannot expect the world to revolve around me and my life, and neither can this author.
My heart goes out to you! I’ve been fighting endo for many years in a maschilist country where i’ve been told from “it’s all in my head” to “you foreign women get this kind of thing because you are more inclined to promiscuity” so i can only imagine how hard it is for you & others in this situation! If you could accept i would be proud to have you as my endosister! X
Identifying how the LGBTQA community is failed by major medical allows us to create a plan to fix it. The failure to have this conversation is what has created this situation in the first place. Whether the individual’s reading this are aware or not, this is a new conversation. This section of our communities has been ignored. In other words, we do NOT discuss the issues that our LGBTQA family faces and therefore, pretend it does not exist.
AGAIN, BRAVO for sharing your story. Allowing those who identify as trangendered to feel validated will give them the courage to demand effective treatment without shame. This conversation is necessary and constructive. This is the first step to normalizing the treatment of those who fail to fit the binary system of gender and health
Instead of pointing out how you feel others are oppressing you, including women who suffer with endo (ugh!), why don’t you just say what you want? No point in complaining if you don’t offer solutions.
Part of finding a solution is recognizing that there is a problem. This article isn’t about complaining, but rather, spreading awareness about the fact that those in the trans community have a difficult time finding endo support. That is a valid point to make.
Great article. Trans phobia in endometriosis groups and support services have driven me out of most places I’ve gone looking for support. It is too hard to accept services that hinge on me identifying publicly as cis, and the fear those services and supports would end or I would be misgendered if I changed my identity or pronouns (as a still questioning person). Every attempt at awareness has been met with “you are doing this wrong” “you can’t tell me what to do or what to call you” and “I will not be told who I am oppressing”, which is very hard coming from the supposed “leaders” and “role models” of endometriosis awareness. Hopefully with more great articles like this and cis allies in the very gendered world of endometriosis support groups, some progress can be made!
Thank you for sharing your voice. There are so many individuals who do not fit cleanly into these boxes that we have created. It is so important to continue sharing your voice and experience. You provide hope and inspiration for others to do the same. Small steps to big changes and effective care for all individuals.
Thank you for sharing your experiences and I can’t imagine how hard this is for you at all. To even get the doctors to listen in general about this disease then throw in trans would make it all more confusing and less likely for them to listen. Your voice means a lot and you are a strong Endowarrior and as hard as its been your voice will get out there I am sure of it. 🙂