Like many others with the condition, Beau Gray thinks he probably lived with symptoms of endometriosis for years before being diagnosed. Growing up, Gray (whose pronouns are he/they) suffered from extreme period cramps, pelvic pain and digestive symptoms. But it wasn’t until 2016, when they were 30, when they found themselves in agony on the highway driving from Vancouver to Squamish, British Columbia, that they realized something was deeply wrong. “It felt like I’d been stabbed in the gut.”
Gray, now 35, sought care and, later that year, their doctor told him that they suspected Gray had endometriosis—a diagnosis that began a two-year medical journey made more traumatic by the way Gray was treated as a transgender patient.
Endometriosis (or endo) is a painful chronic condition. It’s marked by the growth of tissue similar to the lining of the uterus in other parts of the body. Although endometriosis commonly appears in the pelvic cavity, it can cause extreme pain and symptoms of inflammation elsewhere. It has no cure, and the success of treatments can vary widely from patient to patient. Currently, a diagnosis of endometriosis can only be confirmed via a laparoscopic surgery—sometimes, visible endometrial tissue and scar tissue can be removed from the affected areas during this procedure. Historically, discussions around endometriosis have framed the condition as one that affects mainly white, cis women of childbearing age. Even for those who fit this narrow margin, getting diagnosed with and treated for endometriosis can be difficult due to dismissive doctors and societal misconceptions around “women’s” health. For people who live outside of that framework—including people of colour and LGBTQ2S+ folks—it’s even harder.
When Gray sought specialized endometriosis care, they faced dismissal and discrimination. Post-diagnosis, they were prescribed hormonal medication to treat the condition, and suffered severe mood changes. “They kind of turned me into a monster,” Gray says.
Finally, two and a half years after he first suspected he had endo, Gray was admitted into a complex chronic disease program at B.C.’s Women’s Hospital and Health Centre, where he was put under the care of a surgeon. Rather than opting for a surgical procedure that would remove the endometriosis but preserve the pelvic organs, Gray wanted a hysterectomy—a surgery that removes the uterus entirely, and may also remove the ovaries and fallopian tubes. But first, he had to undergo an intake process.
“The surgeon that I was dealing with was hideously unaware of trans issues,” he says, describing how the doctor used incorrect pronouns and showed a general lack of knowledge when it came to providing care to trans and non-binary patients. On one occasion, during intake for the surgery, Gray was repeatedly misgendered by that same surgeon. He says it was particularly damaging. “I have pretty thick skin… but that appointment broke me. I was traumatized afterwards.” Gray hopes that there have been positive changes on the part of medical caregivers in the time since his procedure. When Gray was first trying to understand the cause of their pain back in 2016, they turned to self-directed research. After starting to suspect they may have endometriosis, they went looking for resources. Eventually, they found endo support groups. Online endometriosis support groups have grown in recent years to become effective community-built sources of care and information. When trans and queer folks with endo need information that their doctors are not able to provide, these groups empower them to advocate for better care.
Eli, 33, is a non-binary person living in Vancouver who was diagnosed with endometriosis in January of 2021 after two years of intense lower back pain that would wake them up nightly. (To protect their privacy, Xtra is not using last names for some of the sources in this story.) They had to cut back their shifts at work to three days a week to try to catch up on missed sleep and recover from painful episodes. Over the years, they ended up in the ER multiple times for intense back and abdominal pain and vomiting, only to be told to take Gravol and sent home. Eli says their experiences with emergency care echoed “a long history of disbelieving people of marginalized identities when they speak about pain.” They were finally diagnosed during an emergency laparoscopic surgery.
Eli’s gynecologist also suggested hormonal treatment to manage their condition. Endometriosis is thought to be related to hormone production, so often birth control or other hormonal treatments are suggested—although they are not guaranteed to work. Eli had questions. For example, could they take hormonal medication to manage their endometriosis if they wanted to be on testosterone? Their doctor, as supportive as she was, simply did not have the information they needed to make an informed decision.
Like Gray, Eli turned to the internet. Online endometriosis support groups can be found everywhere from Facebook to Reddit, but they are not necessarily safe spaces for marginalized voices. It is a classic problem that surrounds so-called “women’s issues” and reproductive health: cissexism and heteronormativity tend to dominate conversations around endometriosis, and too often, solidarity in support groups can turn into TERF-ism (trans-exclusionary radical feminist ideology and attitudes).
In response to exclusionary attitudes and inadequate information from their physicians (and from endometriosis spaces in general), LGBTQ2S+ folks with endometriosis are building their own communities online. Many of these spaces exist on Instagram and Facebook, where groups like endoQueer and Endo Knows No Gend-O provide a blend of rigorously-researched resources, personal anecdotes and community support.
“I found some groups that are really supportive around queer, trans and Two-Spirit identities and navigating self-advocacy,” says Eli, who joined both the endoQueer and Endo Knows No Gend-O groups on Facebook. There, they found stories from others who were asking the same questions they were and advice for how to negotiate medical appointments. Eli read stories of others who were navigating endometriosis while taking testosterone, which helped them consider their own options. They were even able to read and print out medical articles that others had posted, which they brought to future appointments. For example, some of Eli’s endometriosis was found to be on their bowels during their emergency surgery, and when they weren’t satisfied with the follow-up care they received, they referenced one of the articles they found online to advocate for more specific imaging and follow-up appointments that addressed their needs. With the help of online groups, Eli says, “I feel like I can go into appointments and have contextual information to make informed choices.”
Les Henderson, who founded endoQueer last year, says that their experience with endometriosis would have been very different if they’d had access to better resources and care. When Henderson (whose pronouns are she/they) was diagnosed with thoracic endometriosis in 2016 after two lung collapses, she struggled to find community—whether it was in support groups in-person or online. “I didn’t see anyone that looked like me,” she says.
As a Black, masculine-of-centre lesbian, Henderson has firsthand experience of the challenges that marginalized people face when it comes to advocating for their health. Henderson lives in the U.S., but the community they’ve built across Instagram, Facebook and on the endoQueer website is international and filled with practical paths to community care, from advocacy tips to mutual aid. Through endoQueer, queer and trans people with endo can find specific examples of what to say to their doctors when asking for more inclusive care; lists of resources from everything from housing support to queer-focused hotlines and support centres; and events like the Care and Caregiving Summit, a fundraising event where folks can find community and get educated about caring for themselves and their loved ones with endo.
Groups like endoQueer set an example for health care professionals; with specific language, medical research and community support to back them up, LGBTQ2S+ people with endo can reclaim some sense of agency during a treatment process that can leave them feeling alienated. Medical professionals can vastly improve the experiences of their queer and trans patients with the help of specific language tools (like correct pronoun use and non-gendered treatment plans) and resource lists that include specific support for LGBTQ2S+ folks. Online support groups are making this knowledge and these resources available to the public, making it possible for patients and providers alike to rally together to provide better research funding and inclusive care plans and can even act as the watchdogs of medical professionals perpetuating homophobia or transphobia in care settings.
The example being set by endoQueer and other online communities is being seen
and heard in Canada. After reflecting on the community-building power of their own Facebook support group, The Endometriosis Network Canada (TENC), Canada’s first and only registered endometriosis charity, recently launched a blog that works to actively highlight the voices of queer, trans and non-binary people, as well as educate health care providers. Maia Leggott, blog co-ordinator for TENC, says that the project’s goal is to make support accessible to all Canadians with endometriosis. They consulted members of the endoQueer Facebook group and encouraged them to submit their stories and ideas to the TENC blog. “There is so much value in the experience of people who are not cisgender women,” they add, outlining TENC’s efforts to highlight “the endo stories that we don’t always hear.”
Still, as well-informed, supportive and advocacy-minded as many online support groups are, there are limitations to what they can accomplish on their own. Physicians are still the key decision-makers, and patients can be frustrated with this power dynamic. “It’s a shitty feeling to have to appease the gatekeeper,” Eli says. Even if a patient is armed with a plethora of personally curated resources, the way their doctor responds to those resources can still result in an experience that feels invalidating—or worse, an experience of inadequate or nonexistent medical care. Due to the gendered history of medicine, the science itself is a limitation as well. Despite the U.S. government doubling research funding for endometriosis last year, endo care suffers from a general lack of research and funding; there are decades to catch up on.
When care providers do listen, though, it can radically change patients’ experiences. Fel Castaneto, a 30-year-old from Surrey, British Columbia, says that their experience getting care for endometriosis was positive overall: “I’m fine knowing that I have endo, and I’m comfortable talking to anybody about it.” Castaneto has a gynecologist who is affirming, both of their pain and their experience as a non-binary person. “I’m so thankful that I got to see her and she told me it’s not all in my head,” they say, adding that they, like Eli, are still navigating questions around continuing hormonal endometriosis treatment as well as taking testosterone. Their gynecologist doesn’t have all the answers either, but Castaneto trusts her and feels comfortable learning alongside her.
Michelle, from Toronto, is queer and polyamorous. She says that her experience with endometriosis was made more distressing by the lack of safe spaces she found, both in hospitals and mainstream endo support groups. “It felt really lonely and isolating,” she says. Inclusivity would mean better care for trans and non-binary folks as well as people like Michelle. As Leggott puts it, “The only way endometriosis care is going to improve is when the people with the power realize that we are not all patient X, who is in a hetero relationship and… has fertility as a goal.” But some health care providers, like Dr. Neeraj Mehra, have consulted online groups to better their care, leading to real change for queer folks across the spectrum.
Mehra is a gynecologist specializing in endometriosis who works in collaboration with Trans Care BC and has a number of trans patients. One of the online support groups he has joined is Reddit’s large r/Endo subreddit in the hopes of learning and witnessing the concerns of patients outside of a clinic setting. Being part of the discussion helps Mehra understand what marginalized patients find to be supportive in terms of bedside manner, and importantly, it also helps him anticipate which treatments and care plans are top-of-mind in the community at a given time. Mehra says that listening is especially important when it comes to conditions like endometriosis; he’s read stories of patients who were dismissed or neglected by their care providers, and of patients who were rushed into ultrasounds and tests without being able to explain their full histories first. “What I find is really key with endometriosis is the story,” he says, adding that having good conversations with patients and understanding their history is often more effective than running tests. This approach allows him to provide a kinder experience to his patients, and can often result in more efficient and effective care.
Queer and trans endo patients themselves echo what Mehra has learned online: many of the current issues with endometriosis care come down to dismissive attitudes towards pain, especially pain occurring in marginalized bodies. There are plenty of things for medical professionals to improve on—from checking in about pronouns to being better informed about gender-affirming treatment to actively letting go of biases towards prioritizing fertility.
So what’s step one for health care providers looking to make change? Gray sums it up clearly: “Listen to trans people. Listen to your patients.”