Using Androgens in Endo Care
In your endometriosis journey, has a doctor ever asked you to try danazol? During my more than 20 years as an endometriosis patient, I’d never heard of it until I connected with Arielle Johnson, a Cornell University graduate student who uses danazol as part of her treatment plan.
Johnson wanted to try an alternative treatment to the GnRH agonists typically prescribed and asked her doctor about danazol, a synthetic androgen similar to testosterone. Danazol has been used since the 1970s to suppress the growth of endometriosis and stop menstruation.1
But doctors may hesitate to prescribe it because it can cause increased body hair, acne, weight gain, voice deepening, increased cholesterol, and enlargement of the clitoris. For many cisgender women, these side effects are not gender-affirming, and they seek other treatment.
Johnson was aware of danazol's potential masculinizing side effects, but as someone in her 20s, she wanted to avoid some side effects of GnRH agonists including bone density loss. After several months of treatment with danazol, Johnson noticed her body changing.
Danazol male puberty side effects
She couldn’t find a lot of information, so she reached out to transgender friends who knew first-hand about the effects of taking sex hormones.
“There’s not that much about the side effects of danazol out there because people don’t want to talk about women undergoing male puberty,” Johnson said. “Feminine cis women seem especially unlikely to post their stories online or tell their doctors exactly what is happening to their bodies.”
Johnson said she’d like to see the fields of endometriosis care and trans health care connect because the information exchange could be mutually beneficial.
“Most of the info I’ve gotten about danazol has been from trans health sources and trans friends. I feel like the fields should talk to each other. Danazol is not an edge treatment. Tens of thousands of cis women have done this for years. There is cross-talk that should be happening that is not,” she said.
The decision to go on danazol had some implications for Johnson’s gender identity, which was not strictly feminine.
“Prior to starting androgens I had a little bit more of a masculine appearance. I had short hair and I have been called sir. I started realizing that if my breasts started shrinking and body fat redistributed...I didn’t think I would be as readily identified as a woman. So I shifted how I dressed because I wasn’t ready to not identify as a woman. I had to dig up some dresses.”
Now that she’s been on danazol for a while, she’s noticed fluctuation with her gender identity.
“My gender identity is maybe a little unstable. I’ve thought about what it would be like to be a man or nonbinary person before. Sometimes I miss both my more masculine clothing and my more feminine body that I had prior to taking danazol.”
But for now, she is going to focus on managing endometriosis.
“I’ve decided for myself that I value my health more than my gender presentation. This is what’s working for now,” she said.
Advocating to be heard
In addition to focusing on her health, Johnson is advocating for the health of others. She co-founded the Pelvic Pain Association at Cornell (PPAC) after having a dismal experience with Cornell doctors, who she said did not take her symptoms seriously. PPAC is asking the university to hire a doctor with expertise in pelvic pain to better serve the community.
During one appointment at Cornell, Johnson, who is bisexual, encountered a nurse practitioner who focused on stress as the reason for Johnson’s pelvic pain, rather than investigating physical causes.
“She was bringing up my relationship with my parents, and asked me to do an intervention with a psychologist.”
In the appointment with a psychologist, Johnson was incensed to realize that the majority of the session was going to be focused on her sexual identity.
“The psychologist was grilling me about my sexual orientation and how my parents feel about it. I didn’t like the insinuation that the pelvic pain was caused by my sexual orientation. They were implying that there was something wrong with me and my relationship with my parents.”
Meanwhile, Johnson’s pain continued, so she decided to go beyond Cornell, first by seeing other gynecologists in Ithaca and then moving on to Rochester, which is about an hour and 40 minutes away. She finally found a practitioner who gave her a clinical diagnosis of endometriosis and recommended laparoscopy.
Johnson researched the best options for her and decided to work with a surgeon at Yale New Haven Hospital in Connecticut, partially so she could recover at her parents’ house.
A year and a half ago she had excision surgery and was definitively diagnosed with endometriosis. Four months after surgery, the pain started coming back and she decided to go on danazol in addition to the birth control she’s been on since age 14, which she’s taken continuously since age 22.
Johnson notes that she is privileged to have been able to drive long distances to seek healthcare, that her status as a white woman attending an Ivy League school may have helped her be taken credibly as a patient in Rochester and New Haven, and that she is lucky to have had health insurance that covered most of the cost of surgery. Reflecting on her experience while trying to access endometriosis care, Johnson sees connections between the problems with endometriosis care and trans health care.
“Both have an access issue. If you are wealthy, you can have the info and access to hormones and surgery. But otherwise, it’s hard to get good healthcare for both endo and trans care, particularly when you talk about stigmatized conditions that require sex hormones.”
Weird Endo Symptom: Have you ever experienced what felt like a vibration in your pelvic region?