trans.cafe

Transmasculine Pelvic Pain: It’s Time To Deepen The Conversation

HealthAaron Rose
Image by Rebecca Lieberman

Image by Rebecca Lieberman

by Aaron Rose

Going to the doctor as a trans person is no small feat. A recent study reported the 19% of trans people have been refused care due to their gender identity, and 28% have been subjected to harassment in medical settings.

Many trans people report facing invasive, irrelevant questions about their transition history and genital configurations when seeking care for unrelated medical issues, like getting antibiotics for strep throat or setting a broken finger. These prying, exhausting conversations are enough to make many trans people not go to the doctor at all. Almost half of trans people have postponed seeking medical care due to discrimination (28%) or the inability to afford it (48%).

It is hard enough to receive adequate treatment for routine ailments, but when it comes to more sensitive and serious medical needs, getting clear answers and timely treatment can still feel nearly impossible.

For female-assigned-at-birth (FAAB) trans people, one such issue is pelvic and abdominal pain.

Hundreds of Reddit and private Facebook group threads are full of comments like, “For the last few months have been getting some super annoying cramps. It feels exactly like I remember shark week, even though it's been more than five years since Aunt Flo came to town.” Others chime in to offer descriptions of their own experiences and accompanying frustrations with medical care—ranging from detailed accounts of random cramps and fatigue to doctors’ assurances that nothing was wrong even as the pain increased from intermittent to constant.

The source of these symptoms is often unclear, but the culprits can include endometriosis, uterine fibroids, and polycystic ovary syndrome (PCOS), conditions that affect many female assigned at birth people, regardless of gender identity. Though distinct from each other, these conditions share many similar symptoms, including abdominal and pelvic pain, fatigue, dizziness, mood dysregulation, and more.

These patterns mirror my own experience. I too began to experience serious chronic pain, which was repeatedly dismissed by doctors. After months of incapacitation, I finally received an advanced endometriosis diagnosis, and was told I needed to have a total-hysterectomy and oophorectomy as soon as possible.

However, the first doctor I saw asked me, “Are you sure you’re not just anxious about your period? That might explain the dizziness. I mean, you weren’t even supposed to be born with these organs, right?”

When I showed up at my local LGBTQ health center, doubled over in excruciating pain and unsure of what was going on, my vision was so blurry I could not read texts on my phone. I was hopeful that relief was in sight, trusting that NYC’s most trans-savvy doctors would be able to give me some preliminary answers, or at least some basic sympathy. However, the first doctor I saw asked me, “Are you sure you’re not just anxious about your period? That might explain the dizziness. I mean, you weren’t even supposed to be born with these organs, right?” She then told me to take some deep breaths and sent me home without so much as a referral to a specialist. I was in bed for the next week, and my symptoms continued to get worse.

Doctors are quick to point to trans identity as the source of people’s symptoms, rather than to recognize it as a barrier to treatment. Assuming I experienced dysphoria, my doctor completely attributed my symptoms to her perception of a lack of congruity between my gender identity and my physical body. If only it were that simple. As I gingerly walked out the office that day, I said to my friend, “It’s 2015. Are they actually still telling people with uteruses that they’re ‘hysterical’?” Turns out, the answer is yes.

It’s been decades since doctors have actually diagnosed women with “female hysteria,” a catch-all diagnosis that used to cover everything from mood swings to faintness, from chronic pain to insomnia. However, the idea that people with uteruses are mentally unstable, acting out, and exaggerating their pain still shows up in doctors’ offices every day.

There is still the cultural understanding that abdominal pain in female-assigned-at-birth people is normal, something that requires acclimation and acceptance, something to be endured, silently. Doctors frequently do not take this pain seriously. Nearly every person I know with a uterus, regardless of gender identity, has been told at some point, by a parent, by a doctor, by a teacher, that they are overreacting, that they need to buck up and deal with it, that this is normal. Being regularly, predictably incapacitated by pain should not be considered normal.

Furthermore, being trans amplifies the problems people already have in getting this kind of essential health care. The intersections of sexism and transphobia, as well as racism and economic oppression, make it particularly hard for trans people to receive adequate care for these issues.

Accessing care for these kinds of symptoms is complicated not only by medical provider bias, but by the lack of research on both transgender health care and conditions like endometriosis, uterine fibroids, and PCOS. While it is standard practice to recommend a total hysterectomy within five years of testosterone hormone replacement therapy, little is known about the long-term impact of testosterone on typical FAAB reproductive organs. When I first began experiencing pain before even starting testosterone, not a single provider at NYC’s most well-known LGBTQ health center could tell me if testosterone was more likely to worsen or improve my symptoms. Minimal research exists, and in many cases over-worked providers are not up to date on it.

“Trans people are dying in the streets due to overt acts of violence, but they’re also dying quietly at home, from illnesses that were at one point highly treatable. This is the violence of systemic discrimination.”

Health care providers’ bias and lack of investment in research are literally killing people. Just this month we lost Jay Kallio, a trans man whose breast cancer diagnosis was withheld from him until the cancer had spread throughout his body and become terminal. Trans people are dying in the streets due to overt acts of violence, but they’re also dying quietly at home, from illnesses that were at one point highly treatable. This is the violence of systemic discrimination.

This is basic stuff. This is about valuing what is traditionally known as “women’s health care,” and prioritizing longitudinal research on trans people’s medical experiences. It’s about deciding to shift resources. It’s about holding doctors and researchers accountable. It’s about sharing our stories.

I am hopeful that this is the beginning of a conversation.

Over the next few months, we’ll dive deeper into the different aspects of this issue—from how to vet doctors, to making choices about lower surgeries, to what the limited research tells us about hormone replacement therapy’s impact on reproductive health. Have you experienced this kind of abdominal pain? What has your experience accessing care been like?

What else do you wish you knew about trans reproductive health care? Tweet @transcafemedia to share your questions and stories.

 

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Aaron Rose (he/him/his) is an education strategist, curriculum developer, and activist who believes in the power of education to fuel social change. A lifelong New Yorker, Aaron is an avid history buff, a Harry Potter fan, and a reluctant recent coffee convert. Find Aaron online @aaronxrose and aaronxrose.com.