Endometriosis Care for Transgender Adults Important Information

Endometriosis Care for Transgender Adults Important Information

Endometriosis in the Transgender Community: Breaking the Silence

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Endometriosis is a common and often painful condition in which cells similar to those in the lining of the uterus grow in other parts of the body. While it is typically associated with cisgender women, it is important to recognize that endometriosis can also affect individuals who are transgender, nonbinary, or gender-expansive with female reproductive organs.

It is unfortunate that many people who identify within the transgender community feel invisible and overlooked when it comes to their health concerns. Katrina Martin, a nonbinary endometriosis advocate, expresses this sentiment, stating, “It’s like you’re invisible and don’t exist in the world.” This feeling of invisibility can act as a barrier to receiving medical care and discussing their symptoms with healthcare professionals.

Fortunately, doctors and researchers are beginning to acknowledge that endometriosis can occur in the transgender community, even in individuals who have undergone gender-affirming treatments. Contrary to popular belief, one can still experience endometriosis even after a hysterectomy or if they are not menstruating and their ovaries are fully suppressed.

It is crucial for transgender individuals, including those who were assigned female at birth and identify as male, to discuss any pelvic or period pain with their doctors. Robert Pollard, MD, director of minimally invasive gynecologic surgery, emphasizes the importance of providing a safe space for discussing previous female problems that may have been neglected due to discomfort with traditional healthcare settings.

Overlooked in the Statistics

The prevalence of endometriosis in the transgender community born with female pelvic organs is yet to be clearly determined. Current statistics focus primarily on reproductive-age women assigned female at birth, ignoring the experiences of transgender men, nonbinary individuals, and gender-diverse people.

Limited studies suggest that transgender men may experience endometriosis-related pelvic pain at a higher rate than cisgender women. However, more research is needed to confirm this and explore the prevalence of endometriosis in the larger gender-expansive community.

Based on professional experience, experts speculate that the percentage of individuals born with a uterus who have endometriosis is likely similar across all genders. Unfortunately, the lack of comprehensive data prevents us from drawing definitive conclusions.

Painful Periods, and More

Endometriosis is not limited to the pelvic area and can manifest in various ways. Pollard believes that patients who experience painful periods, pain during sex, bowel changes, or have missed school or work due to their periods may likely have endometriosis.

Beyond the pelvis, endometriosis can cause leg pain, lower backaches, bloating, digestive problems, bowel or bladder pain, fatigue, brain fog, anxiety, depression, and heightened sensitivity to pain. In more rare cases, endometriosis lesions can even develop in the chest, including the lungs, leading to cyclical shortness of breath, chest pain, or coughing.

Les Henderson, a “masculine-of-center lesbian,” shares her journey of being misunderstood by doctors due to her physical appearance. She experienced severe pain and shoulder aches during her period, and it took years of persistent symptoms, including lung collapses, to receive a correct diagnosis of endometriosis in the lungs. She emphasizes the need for doctors to take all symptoms seriously, regardless of external presentation.

Treating Endometriosis in Transgender People

Treatment for endometriosis varies depending on the individual’s condition. Hormonal medications, such as birth control or testosterone, may provide relief for some individuals. However, there is a subset of people who do not respond well to these treatments. In such cases, surgery may be necessary.

Zach McCallum, for instance, underwent multiple surgeries over the course of 20 years to treat his endometriosis. Although hormonal birth control did not alleviate his pain and heavy bleeding, he found relief after the removal of his ovaries and uterus and starting gender-affirming hormone therapy. However, accepting the finality of this decision, which meant never being able to carry a child, was emotionally challenging for him.

It is worth noting that gender-affirming treatment, such as testosterone therapy, does not offer a cure for endometriosis. However, it can lower estrogen levels, potentially reducing pain and active disease if an individual does not have regular menstrual cycles.

Does Gender-Affirming Treatment Help With Endometriosis?

Some transgender individuals opt for endometriosis treatment alongside surgery for gender transition. However, it is essential to discuss symptoms with doctors beforehand to ensure their expertise in both areas.

Finding a surgeon well-versed in endometriosis is crucial, as not all surgeons who perform gender-affirming hysterectomies possess the necessary experience to address endometriosis. Specialists trained in minimally invasive gynecologic surgery (MIGS) are recommended for comprehensive care.

While gender-affirming hormone therapy may alleviate symptoms for some individuals, it should be noted that it does not eliminate pelvic pain and periods for everyone. Its primary function is to reduce estrogen production in the body.

How to Find a Transgender-Friendly Endometriosis Doctor

Transgender people with endometriosis often seek referrals from their regular doctors or rely on social media, online forums, and word of mouth to find healthcare professionals who are knowledgeable about their unique needs. EndoQueer, an LGBTQIA+ resource platform founded by Henderson, provides a safe space for sharing information, experiences, and resources related to endometriosis and similar conditions within the community.

Additionally, resources such as the World Professional Association of Transgender Health Provider Directory (WPATH), LGBTQ+ Healthcare Directory from GLMA (formerly the Gay & Lesbian Medical Association), local gender health clinics, and LGBTQ+ community center websites can help in finding transgender-friendly endometriosis doctors.

Finally, the most critical aspect of finding a suitable healthcare provider is ensuring that they take your concerns seriously, understand the potential presence of endometriosis, and can provide you with a thorough overview of available treatment options.

In conclusion, while endometriosis is often associated with cisgender women, it is essential to acknowledge its presence and impact within the transgender community. By raising awareness among both individuals in the community and healthcare professionals, we can work towards better recognition, diagnosis, and treatment of endometriosis in transgender, nonbinary, and gender-expansive individuals.