“Most providers don’t know the least bit how to treat us. They seem to think that because I’m trans-, a sinus infection is different in me than it is in somebody else. If I wind up talking to them at all about what surgeries I’ve had, most of them just have no clue about any of it.”

Going to the doctor is stressful for anyone. It can be hard to find the right words to describe your health concerns, and to find a provider that is both empathetic and efficient in addressing them. Now imagine that in addition to that, you have to navigate questions about your identity, and even confront discrimination and stigma. This is a reality faced by millions of transgender and non-binary patients.

Around 1 million people in the U.S. identify as transgender and non-binary, meaning they have a gender identity which differs from the sex they were assigned at birth. While transgender individuals may identify as masculine or feminine, non-binary individuals may relate to a spectrum of gender identities that are not exclusively masculine or feminine. Transgender and non-binary individuals face significant barriers to healthcare, including high cost of care, inadequate insurance, and lack of culturally-competent care.

The quote above comes from a study by Paul Chung, MD, assistant professor of urology at Jefferson Health, and Rosie Frasso, PhD, program director of public health at the Jefferson College of Population Health, who together led a multi-disciplinary research team of medical and public health students, to describe perspectives and experiences of transgender and non-binary patients seeking urology care. As gender affirmation surgeries increase, this community of patients have unique healthcare needs and require general urology care to address conditions like kidney stones, urinary tract infections, sexual dysfunction and urological cancer screenings. In a previous study surveying 67 members of an outpatient urology clinic, including administrative staff, nurses and doctors, Dr. Chung and his colleagues found that more than 80% of respondents felt they didn’t have the necessary training to care for transgender patients.

“We hope hearing the experiences of transgender and non-binary patients documented in this study will help address some of those education gaps,” says Dr. Chung, “and ultimately decrease stigma and improve culturally competent care in urological settings.”

“Hopefully our findings will translate into other spheres of clinical care,” says Dr. Frasso. “The more spaces transgender and non-binary patients feel safe seeking care, the more we can begin to address the health disparities plaguing this population.”

Here, patients describe in their own words their healthcare experiences, and what they wish for when visiting a doctor’s office: