Urologists: Agonize over whether to cut, then cut the way I’m telling you

Classification: News

The American Academy of Pediatrics Section on Urology meeting in San Francisco on Monday, Oct. 11, showed evidence that just about every aspect of intersex care is now in question, but that, despite theoretical turmoil, many medical centers are continuing to provide scientifically and ethically questionable care.

Most notably—as we detail below—even though several leaders in pediatric urology urged colleagues to employ less invasive cosmetic genital surgeries, several presenters sent the troubling message that early, aggressive surgeries are necessary (despite a black hole of supporting evidence or ethical analysis).

Mixed Messages about Surgery

Our follow-up conversations with audience members suggested that a mixed message was conveyed: Agonize over whether to cut, then cut the way I’m telling you. Because of this, there emerged a palpable sense of confusion, frustration, and anxiety among the pediatric urologists in attendance.

Intersex People Inside, Outside Meeting

ISNA’s Executive Director Cheryl Chase and board chair Alice Dreger attended the day of meetings, using the opportunity to continue building dialogues and collaborations with intersex-specialist pediatricians. Meanwhile, in the Exhibits hall, PFLAG (Parents and Friends of Lesbians and Gays) helped provide medical care providers with ISNA’s new Tips for Parents pamphlet. A number of intersex activists—including Emi Koyama of Intersex Initiative and Peter Trinkl of Bodies Like Ours—were also at the convention, distributing information and answering questions.

In the Urology Section meeting, David Diamond of Harvard University helpfully presented a fascinating survey of how practicing urologists think intersex should be handled. Shockingly, Dr. Diamond’s data shows that many clinicians continue to prioritize fertility (over sexual sensation and gender identity) for children with XX chromosomes, and to prioritize genital appearance (over fertility, sexual sensation, and gender identity) for children with XY chromosomes. In other words, what sex doctors think you are will determine what they think is important to you—preserving fertility, following the data of your likely gender identity, preserving your parts, etc. This comes nearly a decade after ISNA’s widely publicized critique of this asymmetrical approach as sexist and ethically problematic.

Practice Based on Inconsistent Logic

In response to Dr. Diamond’s data, pediatric endocrinologist Peter Lee of Hershey Medical Center in Pennsylvania questioned the study participants’ logic: Why care about prenatal brain “imprinting” with androgens for some children and not for others? (Kudos for the critical thinking, Dr. Lee! We would add: Why prioritize fertility for some children and not others? More to the point: Why perform irreversible surgeries that risk sensation, fertility, continence, comfort, and life without a medical reason?)

Do You Think She’ll Need These Clitoral Nerves?

In a panel on “Implications of Female Genital Innervation,” pediatric urologist Laurence Baskin of UCSF presented studies completed with Yucel, DeSouza, and others showing that the nerve pathways of the clitoris, labia minora, and surrounding tissues differ markedly from what surgeons have been assuming. Many surgeons have been cutting exactly the places research suggests are the most sensitive and central to sexual response. Dr. Baskin repeatedly stressed the anatomical complexity of the genitals and pointed to the analogies of the penis and clitoris, raising the question of the advisability of cutting children’s parts off—especially in infancy—because parents appear to want it.

Dr. Baskin showed a picture of tissue that had been amputated from a child, and said that one could see in the picture that “the pathologist ended up with the nerves we would prefer the patient to have.” Dr. Baskin’s advice to his colleagues: “We obviously don’t want to be very aggressive,” given how complicated and important the tissue seems to be.

Richard Rink, pediatric urologist from Indiana University, echoed Dr. Baskin’s warning about the dangers of aggressive “reconstruction” of genitals. He argued that the “most important” consideration in 2004 is “how to preserve function”. Dr. Rink told his colleagues, “I think there is a very important question: no one has proved it is a problem to have a large glans or a large clitoris, [so] should we really do anything about this?” (Good question, Dr. Rink!) He then proceeded to discuss how best to achieve cosmetic outcomes considered acceptable by surgeons. On an optomistic note, Dr. Rink went on to claim “we’ve become much less aggressive.”

Whoa! This Stuff is Complicated and Important!

Justine Schober, pediatric urologist from Hamot Medical Center in Erie, Pennsylvania and member of ISNA’s Medical Advisory Board, presented a radical approach to intersex, suggesting that pediatric surgeons should take into account what is known about adult sexuality when they operate on children’s genitals. (Great idea, Dr. Schober!) Dr. Schober used the work of Alfred Kiinsey—as well as her own new studies of adult female sexuality and cross-species studies of sexual neuroanatomy, neurophysiology and genetics—to point out the critical importance of the clitoris and labia minora to sexual sensation … and therefore to relationship-building, sense of well being, and over all quality of life! Dr. Schober cited evidence that tactile sensitivity is diminished following genital surgeries, even when key nerves appear to be preserved.

Genital Surgeries: Poor Outcomes, so Do Them Early!?

As far as we could ascertain from Dr. Diamond’s survey and other presenters, many pediatric urologists press on in the practice of aggressive early surgeries, apparently believing that they must. In a poster entitled “Masculinizing Genitoplasty in Male Pseudo-Hermaprhoditism,” Boris Chertin et al. from Israel documented the phenomenal rate of complications in “masculinizing genitoplasty” there, and finished with a hair-raising conclusion: “Male genitoplasty requires a number of operations. The incidence of major complications justifies that this procedure should be done in early childhood, therefore avoiding psychological and social anxiety by the child and his parents.” Dr. Chertin could provide no evidence that early surgeries reduce psychological and social anxiety, or that lack of early surgeries increases psychological and social anxiety; his evidence only pointed to the very poor outcomes of the surgeries his team performs.

It’s the Behavior, Silly

William Reiner, pediatric psychiatrist and urologist of Oklahoma Health Sciences Center and ISNA Medical Advisory Board member presented the only behavioral outcomes data, contrasting psychosexual development in boys living as males with cloacal exstrophy to those with the classical form.

Conclusion

The Intersex Society of North America appreciates the work of many medical professionals—including some of those named above—in critically examining the care provided to people with intersex and their families. The AAP meeting showed enormous progress in the area of research and critical debate. It also showed there is much left to do to send practice down a progressive road. We will continue our work until we achieve a world free of shame, secrecy, and unwanted genital surgeries for people born with atypical reproductive anatomies. We thank our supporters, including the Arcus Foundation and Kicking Assets and many individual donors, for helping us in this work.