Dani Castro had developed a UTI, but was afraid to go to the doctor due to her track record of bad experiences. She collapsed and became unresponsive, so a friend drove her to the ER. (Content warning.)
“I was hospitalized, and my gender marker was listed as male,” she said. “I had to push back and say something. They changed it, but before I was discharged the medical provider did a pelvic exam.”
During the pelvic exam, the physician moved his fingers around inside of her vagina and told her he was impressed with the results of her surgery. Dani didn’t have the energy or resources to file a lawsuit and dealt with the inappropriate, traumatizing event through therapy, family and friends.
Today, Castro is a project director at the University of California, San Francisco Center of Excellence for Transgender Health. The UCSF center serves to offer comprehensive care to the trans community, and offers guidelines and resources for primary care providers treating transgender and gender non-binary people.
Castro says she’s spoken to folks who have had disrespectful doctors and traumatizing experiences in the emergency room, and during the far more frequent routine visits. Often, Castro says, physicians just “use trans patients to answer questions they’re curious about.”
Madeline Deutsch, director of UCSF Transgender Care said that specific exams “should only happen if it’s necessary, relevant and based on evidence.” In her professional opinion, “asking someone for a genital exam because, oh, well they’re taking hormones, maybe they have testicular cancer—maybe first make sure there’s evidence.” Such a relationship between hormones and cancer has not been shown.
Patients already need to travel all over the country for gender-affirming surgery, and the waiting list could be over a year. Despite broader coverage for transgender services under the Affordable Care Act, some state health insurance plans still exclude them, and who knows what will happen with the outcome of the Affordable Care Act vote. It’s no surprise that simply receiving preventative care is an ordeal for trans and gender non-binary folks.
“Most of us don’t go for prevention,” said Castro. “We go when it’s an emergency.”
The situation is miserable. In 2015, 28,000 transgender people from all fifty states took the National Center for Transgender Equality’s United States Transgender Survey, the largest of its kind. A third had a discriminatory experience at the doctor’s office. A quarter of the respondents “did not see a doctor when they needed to because of fear of being mistreated as a transgender person.” A National LGBTQ Task Force survey of 6,450 transgender and gender non-binary people from 2011 documents cases of patients concealing their identities from their doctor, and what appears to be a general lack of sensitivity in the medical field when dealing with trans issues, including using the incorrect gender pronouns and even mocking patients. Around 20 percent of the participants of that study were flat-out denied care.
“They’re afraid to go to the doctor because of discrimination, and data shows that the fear is justified,” said Deutsch. “When patients arrive, they’re finding doctors who aren’t properly trained on how to care for them.”
One 2011 survey completed by 132 American and Canadian medical school deans found that undergraduates received a median of just five hours of training in lesbian, gay, bisexual and transgender-related content. Of those schools, 44 had zero hours of LGBT content in their clinical studies.
As a result, trans folks might face what some have dubbed “trans broken arm syndrome,” where doctors blame whatever health ailment simply on the patient being trans. Malcolm Maune, who works for Trans Lifeline, a hotline staffed by transgender people for struggling transgender people, has lupus and has frequent interactions with doctors he trusts. But he’s gone to new doctors who’ve assumed his troubles simply stem from taking testosterone. “They think that’s optional, somehow,” he said. “They’ll just attribute all kinds of things to it that have nothing to do with it.”
Sure, a few studies have shown that some men receiving testosterone for other ailments have an increased risk of heart disease. But several studies comparing transgender men with cisgender women specifically haven’t found an increase in cardiovascular problems. And Maune’s doctors ensure he has the same amount of testosterone as any cisgendered man—and cisgendered men are more likely to suffer heart attacks younger, regardless! “If people assigned male at birth are happy living with that heart disease risk, then I’m happy being trans living with that heart disease risk, please and thank you very much.”
Not all transgender or gender non-binary folks take hormones, but it is an important way for many trans people to match their physical appearance with their identity. And for them, hormone therapy isn’t optional.
Uninformed medical advice could have devastating consequences. “Taking someone off of their hormones is a good way to precipitate a suicide attempt,” said Maune, adding that somewhere around 40 percent of trans people attempt suicide during their lifetime. “This is a matter of life and death.”
Somehow, even the endocrinologists who specialize in hormones aren’t knowledgeable in sex hormone treatment, Joshua Safer, Medical Director of the Transgender Center at Boston University, told me. Given the increasing number of folks who identify as transgender, possibly 1 in 137 teenagers, according to a recent New York Times report, “It would be hard to have an endocrine practice without seeing some [trans people],” he said. A 2017 study found that of 411 practicing endocrinologists, 80 percent had treated a transgender patient, but 80 percent never received training on how to care for them.
The Endocrine Society has a set of guidelines on treating transgender patients for endocrinologists, said Safer, but they’re not up-to-date. Today, they are literally called “Endocrine Treatment of Transsexual Patients,” “transexual” being a term no longer considered to be an umbrella term for transgender people. “They’re in serious need of being revised,” said Safer. “We’ve been working at the revisions and are sorry they’ve taken us until 2017.”
These oversights lead to glaring omissions in even the most basic care, like advice on maintaining a healthy lifestyle. Trans folks already suffer from higher rates of diet pill use and eating disorders than other patients. Hormone therapy can lead to weight gain or weight loss, according to UCSF Transgender Care, which could exacerbate these issues. And yet, the folks undergoing hormone treatment that I talked to have had little dietary or nutrition advice from their doctors.
When my friend Mattie White chose to start taking hormones, she had questions. How should she eat? Should she alter her behavior or lifestyle? “I would even ask, ‘Are there any vitamins I should make sure I get enough of, things I should avoid?’ My doctors would just say, ‘Take whatever you want.’ I asked my doctor if I should eat less protein so I don’t have too much muscle mass. They said, ‘If you want to, you can eat less.’ I want a more specific answer than that!” This ambivalence seems to be a repeating theme.
Sadly, much of the missing guidance is supplemented through message boards and testimonials shared online, like the common tip to decrease muscle mass by avoiding protein altogether. One person I spoke with, Sarah Garland, told me that she had found this posted on blogs, Reddit’s r/asktransgender board, or the Susan’s Place forum. “I know that is not healthy,” said Garland, “but some people do it out of desperation.”
Deutsch says it’s unacceptable that trans folks are not provided the same kind of health advice and basic care that many take for granted. “I see fear and hesitation from medical providers on providing gender-affirming care, then walk around the clinic and see the curveballs other patients throw providers,” she said. “They take care of patients with far more complicated and rare situations that involve more complex and costly treatment that may have more side effects of risk.”
Deutsch commented that yes, there is a lack of research studying transgender people specifically. But many providers are already treating patients who take hormones, and some of the ailments they’re blaming on hormones are just common ailments that people always have that doctors already know how to treat. “High blood pressure is high blood pressure and high cholesterol is high cholesterol,” said Deutsch.
If medical providers are unsure about how to treat a patient, there are guidelines that can help them not be shitty about it.
The Center of Excellence for Transgender Health offers some incredibly detailed guidelines that are “readily available for a minimal amount of searching consistent with the degree of searching providers do on a daily basis for other uncommon symptoms,” said Deutsch. These include ailments reasonlessly blamed on hormones like cardiovascular disease and testicular cancer.
Possibly most importantly, these guidelines provide instructions on how to perform an appropriate physical exam in a way that won’t drive a patient away from seeing a doctor again. Things can get better.
Trans Lifeline is a hotline staffed by and for transgender people, with experts ready to chat to folks in distress or in need of support. Its numbers are (877) 565-8860 for the US and (877) 330-6366 in Canada.