Many people use gendered language when they talk about endometriosis, a common and often painful condition in which cells similar to those in the lining of the uterus grow in other parts of the body.
But while endometriosis is rare in cisgender men (those assigned male at birth who identify as male), it can also happen in people who are transgender, nonbinary, or gender-expansive and have female reproductive organs.
“It’s like you’re invisible and don’t exist in the world,” says Katrina Martin, 46, a nonbinary endometriosis advocate in Aurora, CO.
That feeling can be a barrier to getting medical care or talking about it with your doctor, Martin says. “There’s a little bit of mental gymnastics that happens to try to even show up to get care.”
Doctors and researchers are starting to recognize that endometriosis can happen in this community, even in some people who’ve had gender-affirming treatments, which support a person in their transition.
“You can still have it if you’ve had a hysterectomy and do not have a uterus or you’re not menstruating and your ovaries are fully suppressed,” says Hugh Taylor, MD, an endometriosis expert and chair of obstetrics and gynecology at the Yale School of Medicine and Yale New Haven Hospital.
It’s important for anyone, including transgender people who were assigned female at birth and identify as male, to tell their doctor about any pelvic or period pain, says Robert Pollard, MD, director of minimally invasive gynecologic surgery at the MetroHealth Medical Center in Cleveland.
“Do you have a history of bad female problems in the past you want to discuss, but you’ve never seen a gynecologist because you’ve never felt comfortable?” Pollard says.
Exactly how common endometriosis is in transgender people born with female pelvic organs isn’t clear. The World Health Organization notes that at least 1 in 10 women have it. But that figure refers to reproductive-age women assigned female at birth. Transgender men, nonbinary people, and gender-diverse people don’t see themselves reflected in those numbers.
Some small studies suggest that endometriosis may affect transgender men who report pelvic pain at a higher rate than cisgender women. But more research is needed to confirm that and to find out if that’s true for the larger gender-expansive community.
Based on their professional experience, Pollard and Taylor speculate that a similar percentage of all people born with a uterus probably have endometriosis, regardless of their gender identity. But there isn’t enough data to know for sure.
When Pollard treats anyone with a uterus, he asks these questions about their menstrual history:
- Do you have painful periods?
- Do you have pain with sex, especially intercourse?
- Do you have bowel changes around your period?
- Have you missed school or work because of your period?
Pollard strongly suspects endometriosis if a patient answers yes to one or more of those questions.
Keep in mind that endometriosis can affect more than the pelvic area.
“It can cause pain, whole-body inflammation, and numerous systemic effects that are sometimes overlooked today,” Taylor says. “It’s not always the classic painful menstrual cramps.”
Symptoms beyond the pelvis can include:
- Leg pain or lower back aches
- Belly pain or bloating
- Digestive problems
- Bowel or bladder pain
- Fatigue and brain fog
- Anxiety, depression, or other mood changes
- Higher pain sensitivity
It’s less common, but endometriosis lesions can grow in your chest, such as on your lungs. This is called thoracic endometriosis. It can bring on cyclical shortness of breath, chest pain, or coughing.
Les Henderson, 38, who describes herself as a “masculine-of-center lesbian,” recalls her shoulder aching along with severe pain overall when she had her period. “It was the weirdest traveling pain,” she says.
She spent more than a decade trying to get treatment for severe period pain. It wasn’t until she had a series of lung collapses that a surgeon diagnosed her with endometriosis in the lungs. Even after that, she felt that doctors didn’t take her symptoms seriously due to her physical appearance.
“My partner is more feminine, and doctors immediately think she’s the one who needs help,” says Henderson, who lives in Prince George’s County, MD. “I’m the one who’s in distress. I’m the one who’s sick. I need the assistance, and I’m dealing with this pain.”
Not everyone with endometriosis needs the same treatment. Hormonal medication, including birth control or testosterone, may ease symptoms for some people. “But plenty of people are resistant to the effects of hormones,” Taylor says. If those don’t help enough, surgery may be an option.
Zach McCallum, 56, started with nonsurgical treatment. But hormonal birth control didn’t help with his worst endometriosis pain and heavy bleeding. He says that over the course of 20 years, doctors found endometriosis on his uterus, ovaries, fallopian tubes, bladder, intestines, and diaphragm. They’re keeping an eye on a suspicious spot in his lungs, too.
McCallum had surgery to remove his ovaries and uterus at 40, specifically to treat his endometriosis. Soon after, he started gender-affirming hormone therapy. His worst pelvic pain eased when his periods disappeared.
Even so, the finality of that operation wasn’t easy for him to accept. “A hysterectomy meant I would 100% never ever carry a child,” says McCallum, of Portland, OR. “Even though I’m a trans guy, that was hard.”
Like McCallum, Henderson and Martin also had multiple operations, including having their ovaries and uterus removed, to treat their endometriosis.
Some transgender people who choose to have surgery to transition can address their endometriosis at the same time. But endometriosis experts suggest you bring up your symptoms ahead of time to make sure your doctor is up to the task.
“You want to be seen by somebody who has expertise in that disease who’s not going to miss it, who’s going to be able to do the extra surgery to get (the endometriosis) all out,” Taylor says. “And that’s often more than a hysterectomy.”
Pollard agrees that not every surgeon who can do a gender-affirming hysterectomy has the skill and experience to treat endometriosis. He recommends finding a specialist trained in minimally invasive gynecologic surgery (MIGS), his area of expertise.
Pollard says if he’s operating, he can “take care of” the endometriosis, and so can other MIGS experts. “But not all of us are the same, and I don’t think patients know that.”
As for gender-affirming testosterone therapy, it isn’t a cure for endometriosis. But it dials down how much estrogen the body makes. This may mean less pain and active disease if estrogen is low and someone doesn’t have a regular menstrual cycle.
But it doesn’t suppress ovulation or get rid of pelvic pain and periods for everyone who takes it.
Many transgender people with endometriosis seek referrals from their regular doctors or ask people they know or meet through social media, online message boards, or word of mouth. Henderson founded endoQueer, a website and Facebook group, to give people in the LGBTQIA+ community a safe space to share information, experiences, and resources about endometriosis and similar conditions.
“That’s the beautiful thing about the internet, despite all the evil that happens sometimes online,” Henderson says. “It’s a place of connectivity.”
Other resources include:
- World Professional Association of Transgender Health Provider Directory (WPATH)
- LGBTQ+ Healthcare Directory (from GLMA, formerly the Gay & Lesbian Medical Association)
- Local gender health clinics
- Local LGBTQ+ community center websites
What’s most important, Taylor says, is that you find somebody who takes your concerns seriously, knows that endometriosis might be the cause, and can describe all your treatment options.