This story is a collaboration with Bodies, a podcast from KCRW.
Cosmo breaks into a smile when they talk about live action role playing. “It’s like Dungeons and Dragons and improv acting had a baby,” they tell me through laughter as if they’re trying to contain their excitement. LARPing is a physical, in-person game where participants dress up and compete with other players. There are various worlds to inhabit—with vampires, zombies, or werewolves—but it’s always an active experience where players run and fight.
“It allowed me to sort of try on a lot of different versions of myself,” said Cosmo. Since early childhood, LARPing allowed Cosmo to escape from a life spent in physical pain. They were first hospitalized at 8 years old. Their first period was pure agony. On top of this, they bled so much that they became anemic, and the anemia made them dizzy.
“It was hard to talk. It was hard to think,” they said. “It hurt so bad that I was sick to my stomach.”
The pain continued as Cosmo started high school, and relief continued to elude them. Doctors prescribed birth control. Sometimes it would help, but then it wouldn’t and they’d have to switch to something else. And while doctors offered temporary relief, they couldn’t provide a diagnosis.
Cosmo’s physical pain also exacerbated a deeper discomfort, a constant uneasiness they didn’t yet have words to describe. Looking back on it, Cosmo realizes that this discomfort was an element of gender dysphoria. Cosmo is gender nonbinary and uses they/them pronouns. But back in high school, they didn’t know about these terms or about alternative pronouns. All they knew is it felt really good to pretend to be someone—or something—else.
When Cosmo LARPed, they chose androgynous, genderless characters. They usually played Fridays after school, and they’d come with hand-crafted costumes. When they dressed as a vampire, they added padding to broaden their shoulders and also accentuated their bust.
But the period pain eventually creeped into their LARPing.
“If I was on my period, I’d be hunched over, I’d be about half as fast,” they said.
As physical activities began to hurt more and more, eventually even Cosmo’s LARP friends stopped inviting them to hang out.
And at school, Cosmo’s period pain made them feel like an outsider. Their period was intense and unpredictable. Some days, it was hard to walk or even stand. They missed school. They were in the school nurse’s office so often that they became good friends. Some girls would brag that they didn’t get period cramps at all—it made Cosmo feel completely disconnected. And they hated how much attention their period drew to them. They had to carry a whole box of super plus pads in their bag all the time, because they never knew when their period was coming—and because they didn’t have time between classes to change their pad, “I had a couple of times where I actually ended up, like, bleeding through my pants and onto chairs.”
The hormonal birth control they started at a young age accelerated the changes in their body. It made their chest grow extra fast; by the end of sophomore year, Cosmo’s breasts were E cups. Cosmo’s mom wouldn’t allow them to have a breast reduction. And when the two would argue, their mom would suggest that they were only upset because of their period; their mom claimed that the size of their boobs gave away their menstrual cycle.
“I hated it so much, because not only was I having to then acknowledge my boobs, I had to acknowledge my period. I was having to acknowledge that someone could look at me and tell, which freaked me out.” Cosmo already felt like their period was more obvious than everyone else’s.
Their menstrual cycle also brought sharp cramping and fatigue. For years, doctors told Cosmo that they might have endometriosis, a condition in which the endometrium, or tissue lining the uterus, grows outside the uterus, often causing severe pain and irregular periods. But nobody was able to confirm that Cosmo actually had it or even provide an effective, long-term treatment.
Sometimes they would stare in the mirror and pick and scratch at their chest until it bled, hoping they could somehow make their chest look different, smaller.
“I was angry at my body. I was angry at life. I was angry at myself for doing this. I was angry at myself for not doing it enough. You know, I would get really down on myself. Like, if you would just fucking commit, this would work.”
Despite all the pain and missed classes, Cosmo made it through high school. They were ready to start college and move on. That changed one night when they were out to dinner with their family. They were casually hanging out and chatting, when all of a sudden everything around them seemed to dim, drowned out by an excruciating feeling in their pelvis. It felt like someone had shot them right in the gut.
To find out what happened, Cosmo needed a laparoscopy, a surgery to investigate the organs inside the abdomen. But the person in charge of Cosmo’s care wouldn’t do it. Instead, the doctors provided opioids and muscle relaxers to manage it but not get to the source of it.
When Cosmo started college, it was hard to study. Either they were in too much pain, or they were too foggy from the drugs. Eventually, they just had to drop out.
Cosmo once dreamed they were lying in a hospital cot, surrounded by blood. They heard a mocking laughter and realized that it was their uterus. In the dream, they felt this urge to yank their uterus out of their body.
“So, I was just clawing at the skin on my abdomen, and it felt like trying to claw through metal, so I reached up in there and I was like, up to my elbow. And I remember finding this hard thing, and I went, ‘Well, that’s got to be it.’” They pulled it out. “It was laughing at me. I remember looking at it in my hand. It was this twisted mess of, like, barbed wire.”
Cosmo woke up from the dream to an excruciating pain in their abdomen. Their period had started. It didn’t feel like the nightmare was over. “It was this weird feeling of failure. Like I had gotten so close to the thing I really wanted and then woke up—and it just felt like it was mocking me with this pain.”
Cosmo kept going back to the doctor and finally was able to get an investigative procedure. It turned out that the feeling of being shot in the gut came from a cyst that had burst inside their ovary. Doctors found that Cosmo’s left ovary was attached to the side of their abdominal cavity with scar tissue. This explained why even walking had become so difficult for Cosmo, and why they would move around hunched to one side. Why the muscles on their left would lock up and spasm with no explanation. Doctors were able to cut away the scar tissue, but Cosmo still didn’t have a diagnosis.
Cosmo felt like doctors barely cared what was going on inside them. It was frustrating. But at least they felt like they were getting closer to the truth about their own body.
Cosmo met a transgender person for the first time in group therapy when they were 19 years old. She was wearing a button that said, “Genderqueer Chicago.” Cosmo asked about it. She explained to Cosmo what genderqueer was: not being a man or a woman. A switch went off in Cosmo’s brain—they weren’t a man or a woman. A lot of things suddenly made sense, like the dreams they’d had since childhood about having a closet filled with different, removable genitalia they could swap out whenever they felt like it.
“My face went blank,” Cosmo said about their conversation with the stranger. “My jaw dropped. And I sat there in silence for a couple seconds.” Immediately after meeting this transgender person in group therapy, Cosmo came out as genderqueer, and then later as nonbinary, in their early 20s.
Looking back on that time, they started to think that maybe the dreams they’d had about tearing out their uterus meant something. That maybe there was a medical solution that could help them both with their pain and their gender dysphoria. Cosmo had heard about hysterectomy through a parent’s friend. They wanted to explore the possibility for themself. Since early childhood, Cosmo knew that they never wanted to have kids. Their medical problems only cemented this certainty. So when they made another doctor’s appointment, they were fully planning to be sterilized.
As soon as they got there, they felt uncomfortable. The name of the clinic was Women’s Health Center, but Cosmo wasn’t a woman: “And then sitting down and filling out paperwork, and you know, there was a box for gender. But, looking around, it didn’t even matter. ... The word ‘woman’ was in the name of the place. I knew which box I had to check.”
When Cosmo was brought in to see the doctor, they said they wanted a hysterectomy, but the doctor shut them down. He said it would be invasive and unnecessary. And he wasn’t willing to irreversibly sterilize Cosmo. So Cosmo asked for a tubal ligation instead, but the doctor initially advised against it and asked Cosmo what would happen if one day they met a man who wanted children.
“It just struck me that he put the wants of a hypothetical person I’ve never met, and maybe never will, over my actual real needs, feeling, pain, and life,” said Cosmo.
Eventually, Cosmo convinced the doctor to perform the tubal ligation. They told the doctor they’d adopt if they met a man who wanted kids. The doctor found endometrial tissue in Cosmo’s body during the surgery. And that’s when the doctor gave them an official endometriosis diagnosis. But Cosmo didn’t learn until afterward that tubal ligation doesn’t help with period pain or endometriosis symptoms. They didn’t have to worry about pregnancy anymore, but they were deeply disappointed.
It took 10 years from when Cosmo first started having painful periods to get their endometriosis diagnosis. This isn’t unusual. According to recent studies, it can often take 11 years to diagnose endometriosis after the onset of symptoms. Even though the things Cosmo experienced—the pain, the scar tissue, the ruptured cyst, and the heavy bleeding—were all in line with endometriosis, their condition had gone undiagnosed.
But the studies don’t completely capture Cosmo’s experience. While multiple studies highlight the difficulty cisgender women face in obtaining an endometriosis diagnosis, there are no studies in major publications that address endometriosis in transgender people. A search for the terms “transgender” and “endometriosis” in PubMed turns up zero relevant results. Google searches lead to some individual stories about transgender people with endometriosis, but there are no in-depth scientific studies.
Transgender people are often left out of medical research. And disproportionate barriers to health care often mean transgender people wait even longer to get an endometriosis diagnosis, according to Heidi Moseson, Ph.D., an associate at Ibis Reproductive Health. Like Cosmo, many experience discomfort or outright abuse when interacting with doctors, which makes them less likely to seek care. And for other transgender people, there are even more barriers; for example, transgender people are disproportionately likely to be uninsured.
And that gender box on medical forms? It can cause more problems beyond the feeling of alienation Cosmo felt in the office. Gendered medical records also make it difficult for transgender people to get proper diagnoses, especially when it comes to reproductive health issues. Moseson said that if someone with a uterus has their gender recorded as “other” or “male,” it might be impossible to register an endometriosis diagnosis or other related symptoms. She and her team have suggested that leaving gender off medical forms altogether might help better serve patients. They also suggest leaving gender out of the names of reproductive health clinics, and including images with people of lots of different genders in marketing material.
And while recent studies suggest that doctors are getting better at diagnosing cisgender women with endometriosis, we don’t know if the same is true for transgender people, due to lack of research.
Cosmo had to deal with the disappointment of being denied the hysterectomy surgery they needed. But even as they were, they made a commitment to themself to figure out how to express their gender. “Instead of a point somewhere on a line that goes between man and woman, I am outside of that line,” they said. “My gender is magical. It is sparkly. Beautiful, flowing, multicolored, exciting, and loud every now and again when you want it to be.” They became bolder in their gender play in LARP costumes. They started wearing a packer—a prosthetic intended to create a bulge in the wearer’s crotch—while LARPing, then in daily life as they became more comfortable. They tinkered with binders as well. A friend of theirs in beauty school helped them experiment with cut and dye jobs that became shorter and wilder.
As Cosmo became more confident in their gender, they made an appointment with another surgeon when they were 24. And this time, they told themself they were going to come out to their doctor as transgender. They showed up at the office and began explaining why they wanted a hysterectomy. Finally, the thing they were afraid to say came out.
“I said, ‘You know, I don’t want the damn thing [my uterus] anyway, because I’m trans,’” they said. “I kind of spilled out that I always hated having a uterus and I hated periods, and I hated everything that came with that. I hated the hormones and what they did to my body, I hated the emotions. I hated having to carry a purse to the bathroom and having everyone know exactly what that means, you know, whether or not they actually did. It just all came out.”
The surgeon stopped Cosmo and told them to say no more, that she’d take care of them. Cosmo started bawling in the office.
Cosmo had fought for years to decide what would happen to their body. And they’re not alone— transgender people are often denied bodily autonomy, especially when it comes to their reproductive organs. Last year, a transgender man had a hysterectomy scheduled in order to affirm his gender—only to have it cancelled after hospital staff learned that he was trans. And while some transgender people are unable to get the surgery they want, others are compelled to have surgeries that they do not want. Ashley R.T. Yergens, a nonbinary person who, like Cosmo, has endometriosis, was pushed by doctors to get a hysterectomy, even though they said they didn’t want to give up their fertility.
Whether you’re transgender, cisgender, or nonbinary, people of all genders have different desires when it comes to their bodies and their fertility. But there are parts of the world, including some U.S. states, where transgender people can’t get documentation with their correct gender unless they can prove that they have had surgery. On top of this, people with uteruses, including cisgender women, often face hesitation and flat-out refusals from doctors when they ask to be sterilized.
The day of their hysterectomy surgery, Cosmo was nervous and excited. Everyone seemed prepared to move Cosmo swiftly through the process when they arrived at the hospital. They said, “Because I was not binary, I didn’t really think there was anything I could do to physically transition. ... I would be trapped in this body forever. And even though this wasn’t something that would be visible to anyone else, I knew and it was meaningful to me.”
A lot has changed since then; Cosmo doesn’t worry about pain preventing them from LARPing. And they don’t care so much about what other people think anymore. They’re reclaiming something else that their period took from them.
About a month after the surgery, Cosmo was suddenly in a bad mood. They were having an acne breakout. Then they realized that these were the symptoms of their hormonal cycle (they still have ovaries, and thus their hormones still fluctuate every month). But they weren’t bleeding.
“There’s no uterus to bleed. This is fantastic. And I was laughing and elated, and my partner was just sitting there trying to figure out why I had just gone from absolute rage to complete joy.” Cosmo celebrated their lack of period by grabbing a container of pads and spiking them into the garbage with all their might. It was cathartic, “like mentally recreating it, so that I could experience the moment of removing the uterus. Like, this is my goodbye. Go in the trash. In that moment, the pads were the stand-in for the uterus, and I felt so light.”
For so long, “every change of pads, every cramp I had, every mood swing, all of it just was like someone smacking me over the head with a hammer that just had the word ‘cisgender’ written across it.” The absence of that? “It was just euphoria. I can’t think of any other way to describe it but euphoria.”