British Columbia

Trans, gender-diverse people with endometriosis fight 'double battle' against pain and lack of recognition

Many transgender, intersex and gender-diverse people with the menstrual-related condition are now demanding greater inclusivity in the fight to get endometriosis better recognized by health-care workers and researchers.

Menstrual-related condition affects 1 in 10 people with a uterus — but is usually seen as affecting women only

Sally Zori suffered agonizing pain due to endometriosis. But their insensitive treatment by hospital staff before a planned hysterectomy elicited a different kind of pain, Zori says. (Ben Nelms/CBC)

The day Sally Zori went to the hospital in Vancouver for their hysterectomy, the journey from the registration desk to the operating table was punctuated by astonished questions about their name, their ID, their gender and their appearance. 

Zori, a transgender person who was assigned female at birth, was suffering from the excruciating pain of endometriosis and opted to have a hysterectomy to relieve the symptoms. But their interaction with hospital staff before the operation elicited a different kind of pain.

"[The nurse] hands me a pink hospital gown and leads me to the women's locker-room to change. I look at her and say, 'Don't you think it would be a better idea to take me to the men's locker-room?'" recalls Zori, 35.

Zori has not had lower surgery, but they have a beard and no breasts. "I am very clearly 100 per cent a man," they say.

"For me, the biggest challenge was the constant having to prove who I was, a legitimate human. And I notice this across the board in the medical field."

1 in 10 

For those people with a uterus who don't identify as a woman, such dehumanizing experiences make it even more difficult to live with endometriosis, a menstrual-related condition causing agonizing pain that has been little researched and is often misdiagnosed.

Zori, who lives in Vancouver, had experienced painful periods their whole life, but didn't know they had endometriosis until they ended up in the emergency room due to the pain. They were quickly referred to a specialist who confirmed the diagnosis. 

Endometriosis affects one in 10 people with a uterus. It occurs when tissue similar to the lining of the uterus implants in the pelvic cavity to form lesions, cysts and other growths, according to Endometriosis Network Canada. This can cause pain, internal scarring, infertility and other medical complications. 

'The biggest challenge was the constant having to prove who I was, a legitimate human,' said Sally, a transgender person who had a hysterectomy to relieve endometriosis symptoms. (Ben Nelms/CBC)

Relatively little research has been done on the causes, treatment and a potential cure for the condition, which has left many women who suffer from it short of physical, mental and emotional support. 

But the struggle for recognition is even greater for transgender and gender-diverse people with the condition, who feel forgotten because endometriosis is often seen as a problem only for women.

Many are now demanding greater inclusivity in the fight to get endometriosis better recognized by health-care workers and researchers.

Surprise diagnosis

Some people think their gender was likely the reason they lived with endometriosis longer than they should have.

Like Zori, Eli — CBC has agreed not to use their last name because they don't want to be identified in their workplace — only found out they had the condition when they ended up in a Vancouver hospital. In Eli's case, it was after emergency surgery.

"It was a total surprise," says Eli, 33, who identifies as non-binary. 

Eli, who lives in Vancouver, says endometriosis was never considered in their case, even though they had endured common symptoms of the condition for years, including chronic pain in the neck and lower back and intense pelvic pain during their period. 

"I do often wonder if I was more stereotypical cis female presenting, if that would have been linked, because it just wasn't in my case," says Eli, who continues to suffer chronic pain, affecting the amount of work they can do every day.

On the website for Endometriosis Network Canada the language and images are designed to be inclusive and to indicate the condition is not only endured by cisgender women. (Endometriosis Network Canada)

'Super-gendered disease'

For Terri, another endometriosis sufferer, the pain of menstruation seemed to evoke the pain felt living in the body they were assigned at birth — a form of distress known as gender dysphoria.

"I would even say that maybe it was because of the endometriosis that I realized I was non-binary because it gave me so much trouble. Maybe if I had had a normal period it would have had a completely different outcome," says Terri, whose last name CBC has agreed to withhold because their family doesn't yet know Terri is non-binary.

Terri ended up in the emergency room several times due to the pain of endometriosis and eventually had to stop working. The suffering and stress caused by the condition led to suicidal thoughts, they say.

Terri ended up in the emergency room several times due to the pain of endometriosis and eventually had to stop working. (Submitted by Terri)

Terri, who lives in Toronto, has been given a respite from the physical pain thanks to a combination of medication and an intrauterine device. But the mental and emotional toll of constantly having to explain their gender and condition remains.

"Sometimes it's exhausting having to explain to everyone and having to educate everyone ... Not only on gender, but also on endometriosis, especially since it's a super-gendered disease. It's like a double battle," Terri says.

They would like to be able to navigate a more inclusive health-care system and support groups, including information and awareness sessions with medical staff. 

"The language needs to change a bit to include other people," Terri says.

Available support

That's one of the tasks being undertaken by Trans Care B.C., the first provincial body responsible for supporting a network of gender-affirming care.

Nurse educator Lauren Goldman is one of the organization's staff developing training materials, also available online, for medical providers to feel more confident treating transgender and gender-diverse patients. 

She says Trans Care B.C. can help patients connect with a health provider who is comfortable and has experience working with such patients.

Maia Leggott says this graphic was created by someone anonymous in the endometriosis community for Endometriosis Awareness Month. (Submitted by Maia Leggott)

But Goldman agrees there is much to improve. 

"We know that gender-diverse people experience health inequities that are related to sexual and reproductive health care," she says. 

"Many patients share that they have experiences of significant body dysphoria and a lot of physical and emotional discomfort during physical exams, inadequate screening and also low service expectations." 

'Endo warriors'

Endometriosis advocacy groups have already taken steps to address the added challenges faced by gender-diverse people living with the condition.

The website for Endometriosis Network Canada, for example, makes it clear that it's not exclusively a "women's condition." 

The organization's blog co-ordinator, Maia Leggott, wrote a widely shared article for the website titled, It's Time for the Endometriosis Community to Drop Gendered Language, which proposes, among other things, using the term "endo warriors" as a term of solidarity instead of "endo sisters."

Leggott, a cisgender woman, admits she had to learn to use more inclusive language. She follows support groups and sometimes sees tough interactions between cisgender women and trans and non-binary people. 

"It's not always easy and it takes a lot of emotional labour for trans and non-binary folks to constantly be defending their identity," Leggott says. 

Maia Leggott wrote a widely shared article for Endometriosis Network Canada proposing language shifts that are more inclusive of all endometriosis sufferers. (Submitted by Maia Leggott)

Human first

Zori's hysterectomy was ultimately successful in stopping the symptoms of endometriosis. 

But they still dream of a world where everyone is seen as human first. They would like medical forms to contain more than "male" and "female" checkboxes, but many boxes or one where each situation can be explained.

And they want an open endometriosis community in which no one feels sidelined because of their identity. After all, Sally says, women themselves have been marginalized for centuries.

"Now it's time for us to include all the rest of the marginalized people," Sally says.