The Barriers to Care for Trans and Nonbinary Folks
Author note: Quest uses they/them and he/him pronouns interchangeably. I will use both pronouns for them throughout this article.
Picture this: you’ve waited 18 years for an endometriosis diagnosis. You’ve always known that something was wrong because you knew that it wasn’t usual to fill up a pad an hour at age twelve.
When you tried to seek help, the first doctor you saw told you to lose weight and didn’t give you any further support or information. Your primary care provider isn’t helpful either, and you limp along, managing your symptoms as best you can.
Many people with endo can relate to these scenarios; many of us wait decades for a diagnosis, experience frequent pain, and deal with symptoms on our own. We may have been told to lose weight or have been gaslit by medical professionals who don’t believe or understand our pain.
No one should have to deal with this.
Challenges and advocacy
It is hard enough for cisgender women, but when you’re a nonbinary trans man, the loneliness and challenges are amplified.
Quest Lawrence, 31, didn’t talk to their parents about their period when they were younger because it brought up dysphoria (an intense discomfort that arises when someone’s sex assigned at birth doesn’t match their gender identity).
It wasn’t until much later that they sought out care for their pain. This provider told them to lose weight.
Quest decided to try running and intensive Dance Dance Revolution sessions. But because they have suspected hypermobility issues, this level of activity caused stress fractures in their legs.
Although they lost weight, their health issues did not improve, and they began having joint pain in addition to back pain.
Quest lived with a foot injury for many months that turned out to be a broken toe. Once he finally got an MRI and it was revealed his toe was broken, he realized he had to, in his words, “start taking things more seriously and be an advocate for myself.” He knew that being written off by providers because of his weight contributed to not getting the care he needed.
“If a skinny person comes in with the same problems, [a doctor is] going to be freaking out trying to do every blood test in the book,” he said.
Seeking trans-friendly care for endometriosis
They began researching their symptoms, utilizing the resources at their university library. They discovered that cisgender males, nonbinary people, and trans men have endometriosis and that it can occur in one’s spine and on the sciatic nerve.
They recognized themselves in symptom descriptions. Still, they had never met anyone like them who had similar symptoms, so it took a while to get up the nerve to find a provider.
Although Quest takes testosterone, and this stopped their periods for a while, they began experiencing symptoms with their cycle.
They Googled “trans-friendly doctor” and found a provider in their area. Quest had avoided going to the gynecologist because of repeated dismissal by providers who said it was Quest's weight that was causing the issues.
But after speaking to a classmate about her symptoms and reading scholarly articles online, they made an appointment. They credit this doctor with turning things around for them.
“I found that one doctor and that opened up all these doors,” they said.
That doctor referred Quest to one of the best gynecological surgeons in his city, who recommended a transvaginal ultrasound. Quest declined.
He had gone to the appointment “stealth,” meaning that he didn’t reveal his gender identity. This is common with trans and nonbinary people who do not want to deal with transphobia on top of their medical concerns.
“I did not want them to know that I am trans. It was hard because my medical chart says I’m on T [testosterone]. When people see that, they treat me differently. It sucks,” he said.
Quest left the appointment with a prescription for progesterone and a recommendation (again) to lose weight.
His issues did not improve.
Overcoming denial and advocating for proper care
"One fateful night, I lay awake questioning whether any of my symptoms were real, and I did yet another Google search where I found [Endometriosis.net's article] about a nonbinary lesbian's experience with endometriosis. As I was reading it I was like, 'Oh my god, this is exactly what's going on with me!' and the article really helped push me to my appointment."
He returned to the office and had the ultrasound. The ultrasound came back as normal. But Quest pressed them, asking for surgery. The doctor finally agreed.
When Quest woke up from the laparoscopy, he was convinced they hadn’t found anything because that ultrasound had not shown cysts or disease.
“I had been in such denial about everything, and I was gaslit for so long that when I woke up from surgery, I said to the nurse, ‘They didn’t find anything did they?’
The nurse that had been there during the surgery came back and said, ‘You’ll notice we had to do an extra incision because we found endo on your kidneys, urinary tract, pelvis, left ovary, and ureter.”
The surgery was not only difficult because of its intensity. Quest also found that the hospital staff members were not using his correct pronouns and frequently misgendered him, even though his pronouns were on his chart. They even used Quest’s dead name (the name he was given at birth).
“The surgery was really hard. Nobody used my chosen name until one of the young nurses came over and read my chart and immediately intervened and asked my pronouns,” he said. “She was the best one, and she was fresh out of nursing school. My doctor referred to me as ‘miss’ the whole time, and so did one of the other doctors.”
But Quest didn’t have enough spoons to correct them each time it happened.
“I was so tired. I’m so used to being beaten down like that at work. I kept saying to myself, ‘It’s fine.’
That nurse said, ‘It’s not fine,’ and she stood up for me. She told me it’s really important that they have the correct pronouns and name for me because if you’re struggling to come out of anesthesia, they need to know what name to use,” he said.
Advocating for comprehensive treatment and recognition
One result of the surgery that Quest was not pleased about was that the doctor didn’t honor his request for the removal of his ovaries and uterus.
“It was just decided for me that it wasn’t an option. It was like, ‘Well, you don’t want to get rid of that, right?’ But I was like, ‘Yeah, I do.’ There was a lot of fear-mongering about how it would mess up my hormones.”
Now Quest is back to researching and making appointments with specialists to find out if he does, indeed, have endometriosis in his spine and on his sciatic nerve.
More appointments with practitioners who may or may not respect his name and pronouns or recognize his gender identity. And yet, he perseveres.
Imagine what might have happened if Quest had not found that trans-friendly doctor. What if he’d not had the strength to push through his dysphoria to get the ultrasound? Or if he had not done his own research and found others like him who were struggling with similar symptoms?
Trans and nonbinary folks deserve better from practitioners and healthcare providers.
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