Endometriosis is a common disorder in which endometrial-like tissue grows outside of the uterus, which may lead to pain and other complications, like infertility (1). Many people struggle with getting an endometriosis diagnosis and finding the right treatment option.
For transgender people, accessing any healthcare can be difficult. A Philadelphia study found that 1 in 4 respondents had been denied healthcare because they were transgender, and over half of respondents had difficulty accessing health services (2). When illness is gendered, this can create an additional barrier for trans folks in need of information or treatment.
We reached out on social media to hear from transgender and non-binary people who have endometriosis symptoms. Here’s what they said.
“I’ve had endometriosis symptoms for 20 years and got diagnosed five years after my symptoms started. As far as treatment goes, I’ve used birth control, Lupron, had a laparoscopy, and a TAH-BSO (Total Abdominal Hysterectomy and Bilateral Salpingo-Oopherectomy—the removal of the uterus including the cervix as well as the tubes and ovaries). My experience with doctors has not been great. They were always more concerned with my fertility than my pain, despite me saying, in no uncertain terms, that I never wanted kids. I also tried an endo support forum but never got into it. The language was never inclusive, always just saying ‘women’.” —Anonymous (AFAB, demi-femme, USA, 34)
“I have had endometriosis symptoms for over 10 years, but I don’t yet have a diagnosis. Doctors insist that what I experience is normal, but I know it isn't. So far I haven’t found any treatment that worked for me. The pill drove me suicidal. The Mirena IUD made me bleed for 10 months straight. I wish that doctors understood more about the nuances of each body and had better testing systems for them, and stopped blanket-treating all period issues with the pill.” —Anonymous (genderqueer/genderliquid, South Africa, 23)
“I’ve had endo symptoms since I started my period, so about nine years. My gynecologist suspects I have endometriosis, I'm probably getting surgery to confirm that later this year. For treatment, I'm taking the combined pill without any pauses, so I don't have a period anymore. It has eased my symptoms because they were heavy period pains and (in the last few months before my unofficial diagnosis) continued bleeding. My experience with doctors has been very good in terms of medical service and answering my questions. They don't know I'm non-binary and still think I identify as a woman, so I can't say anything about their treatment of trans people.” —Nic (non-binary, Germany, 20)
“I’ve had endometriosis symptoms since my first period at 10 years old. Now I’m 24 but I still don’t have a diagnosis. Doctors tell me it's normal and we have to accept the pain. [As far as treatment goes] I was on the pill, but I got very depressed and lethargic and stopped taking it after a few years. My experience with the healthcare system has not been good. They all want to me to take the pill, even when I tell them how it affects me badly, and they don't acknowledge that my symptoms are problematic, they usually tell me to just take painkillers and deal with it, I wish they would listen and take me seriously, even just to diagnose me officially. Right now I feel like I make things up when I can't work and am in too much pain, because I know the pain is too much but it doesn't get validated.” —Suz (non-binary/fluid, Germany, 24)
“I’ve had endometriosis symptoms for about two years, but no diagnosis yet. I am on the waiting list for an ultrasound. I've been offered mefenamic acid (prescription painkillers) but no treatment yet because [the diagnosis] hasn't been confirmed. My experience with the healthcare system has been pretty good, apart from the GP assuming I am a woman (which is usually how I am read by other people so I am used to it). They listened to my concerns and explained the next steps.” —Anonymous (non-binary, UK, 22)
When you have a frequently misunderstood and misdiagnosed illness like endometriosis, support groups and online forums can provide important sympathy and validation. Unfortunately, these places are not always welcoming for trans folks.
“I've read a lot of forum posts and unfortunately they are almost always cissexist. [There’s a] very frequent use of 'women', 'ladies' and 'girls' to describe people with endo. There is a lot of talk about how the prospect of infertility is scary because it makes them feel like less of a woman (because the primary purpose of women is obviously to bear children) which makes me uncomfortable as a non-binary person who doesn't believe that womanhood=childbearing.” —Anonymous (non-binary, UK, 22)
So how to cope in the face of illness and a lack of appropriate healthcare? Here’s some advice from people who have been there:
“I think it's extra hard when a part of your body is misbehaving/causing you problems when you already feel dysphoric or just not great about that part, so it's really important to be kind to yourself and to understand that this is an additional burden faced by people with uteruses who aren't cis women—it's absolutely not your fault if you find it particularly difficult to cope with.” —Anonymous (non-binary, UK, aged 22)
“You are not losing your mind. What you experience is real. No, it's not normal to feel like this.” —Anonymous (genderqueer/genderliquid, South Africa, aged 23)
“If the doctors don't believe your pain, keep persevering because only you know your body. And even though it might be uncomfortable (depending on how uncomfortable you are with your reproductive parts) it's worth it to go to the doctors because it'll help alleviate your pain and prevent it from getting worse.” —Nic (non-binary, Germany, aged 20)
“You are valid, and your pain is real and deserves to be taken seriously.” —Anonymous (AFAB, demi-femme, USA, aged 34)
Early management of endometriosis can reduce the risk of complications. When you track with Clue, you can create a detailed record of your symptoms, their frequency and severity. You can see which symptoms occur at certain times of your cycle. This record can give your healthcare provider information that may help with diagnosis and in forming a management plan.
Trans people may also find tracking helpful for identifying patterns of dysphoria or monitoring the effects of hormone treatments. If you need help to find a healthcare provider, see our guide for finding a trans-friendly OB/GYN.
Download Clue to track your health.