Readers react to blog post about transgender community

The recent blog post, “The transgender community: Urology has a role and a responsibility,” by Henry Rosevear, MD, prompted comments from several readers. Given the interest in this topic, Urology Times has compiled these comments below. Please provide feedback of your own by posting a comment in the box below, or by sending the editors an email at UT@advanstar.com. 

Henry,

Thank you for your recent thoughtful editorial in Urology Times about care of transgender patients.

Perfect timing-just 2 weeks ago, I gave a urology grand rounds lecture entitled "surgical care of transgender patients," and we invited one of our hospital medical oncologists who heads the LGBT medicine program here at University of Pennsylvania. The information was well received by the urology residents (and the few faculty who dared attend).

However in my research for this talk, I too was struck by the absence of any AUA guidelines or white paper statements on the topic of gender dysphoria. The only peer-reviewed consensus information comes from the WPATH [World Professional Association for Transgender Health] guidelines, where at least they are making an effort to standardize care for patients who seek medical/hormonal treatment and possible gender reassignment surgery.

As you may know, the AAMC [Association of American Medical Colleges] is developing a curriculum for medical schools to address issues of gender-related clinical care, and it is just being piloted this past year at a few medical centers.

I agree with you in that there is significant opportunity here for us in urology to become involved in this field, where there is rapidly growing demand but a relative dearth of solid clinical information and research. After all, genital surgery is what we do.

Joe Harryhill, MD

Philadelphia

Next: "Please be considerate of making sure the CAH community is provided with factual, evidence-based information as well."

I must admit I was disappointed to read your July 5th article in Urology Times, “The transgender community: Urology has a role and responsibility.” In reading your academic and military background, you have an opportunity to use your distinction in a positive and thoughtful manner to educate your professional community on the accuracies of Congenital Adrenal Hyperplasia (CAH). As a grandparent of a precious, smart and happy 19 month old girl with CAH I could not miss this opportunity to reach out and share our story. Although CAH is extremely rare I did recently have a chance to meet a Navy Chief with two adorable daughters affected by CAH and I know they too would appreciate more knowledgeable medical professionals in the Navy. I hope it makes a difference on your understanding and approach to CAH going forward.

I recognize your article was to heighten social awareness and sense of responsibility among the urology community on a sensitive and politically charged issue surrounding debate after the North Carolina legislature passed a law that bars people statewide from using bathrooms that do not match the gender listed on their birth certificate. I was saddened by the broader use of transgender and inaccurate portrayal of CAH and negative implications. Transgender is a less clinical term, referring more to gender identity and gender expression than to sexual orientation or physical sex characteristics. CAH is an inherited condition that affects the production of hormones from cortex of adrenal glands, which are part of the endocrine system, not the “plumbing.”

When CAH occurs the adrenal glands cannot properly make the hormones “cortisol” and “aldosterone” and instead overproduce “androgens.” Thus, CAH is usually characterized by deficiencies in cortisol and aldosterone production and excesses in androgen production. Each of these problems can damage health and have life-threatening consequences. For most, like myself and other parents or grandparents of CAH babies, the shock comes not only from the realization that the child has a potentially life-threatening condition, but also from the notion that the condition is one that no one seems to have ever heard of or knows much about. So please understand my passion and reason for responding to your article has more to do about the opportunity to not categorize CAH as a gender concern, but the safety and social well-being of others like my precious granddaughter.

I have included your article comments below:

“Politics aside, and whether or not we even like it, all of us who have gone through a urology residency have spent hours memorizing the steroid pathway and have been grilled on the manifestations and implications of specific inborn errors of metabolism such as congenital adrenal hyperplasia (CAH). Most of us only had to deal with this in residency, although I'm sure a certain percentage had the pleasure of discussing the topic with a certifying examiner in Dallas-a much more anxiety-provoking scenario.

“Further, even small-town plumbers like me have done cystoscopies on women with penises, and we've all been called to the NICU to examine a newborn baby with a severe case of CAH whose gender was nearly impossible to determine-a boy with a small penis and bilaterally undescended testicles or a masculinized girl with clitoromegaly? To this day, I have no idea how physicians decide what gender to write on the birth certificate in situations like that.”

Our story began 8 days after birth during early newborn diagnosis; although we had a positive newborn screen there were a series of potentially serious medical mishaps and missed diagnosis at a major children’s specialty hospital by ER and endocrinologists. This also included an early physical exam by an actual pediatric urologist that failed to identify a single genitourinary opening but thankfully we obtained a second opinion by a nationally recognized CAH urology expert. These babies do not have “penises” that require plumbing but someone that can accurately assess the anatomy and identify and understand fusion or clitoromegaly and can explain to the anxious parents it is an endocrine problem as well as potential surgical intervention options and risks.

As I have compassion for those individuals who self-identify with a gender different to what their birth certificate says, it is a totally different issue from individuals born with intersex conditions that affect their anatomy but not their gender identity. With CAH, a baby girl born with ambiguous or atypical genitalia is still an XX female. No one needs to “decide” on or assign a gender. Confusing the two issues is an extreme disservice to any scared parent who is struggling to find relevant information on a rare, life-threatening and life-long medical condition. It is especially damaging to the parent of a baby girl with CAH who is struggling to make the right surgical decision that will affect their daughter for the rest of her life. So while I appreciate the responsibility you feel to support the transgender community, please be considerate of making sure the CAH community is provided with factual, evidence-based information as well.

Registered Nurse and Grandmother to Salt Wasting Congenital Adrenal Hyperplasia Toddler

Virginia

Next: "I echo the recommendations of Dr. Rosevear that we need formal policy statements from our societies."

As a urologist who has managed many transgender patients over my 25 years in practice, I echo the recommendations of Dr. Rosevear that we need formal policy statements from our societies. My experience with transgender patients began with an ambiguous genitalia patient whose assigned female conversion was met with gender dysphoria beginning at age 7. Her compelling story of self-discovery and ultimate conversion to a male was my first experience with transgender patients.

I urge all members of our society to learn about the issues concerning transgender patients so that we can credibly educate our communities. Education is key, as understanding prevents many of the fear-based reactions that are commonplace in the media.

Tim Hlavinka, MD

San Antonio

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