As a physician, I’ve spent a lot of energy lately making calls to members of Congress to protect my patients’ ability to get the surgery they need, when they need it.
At the same time, I’m celebrating the clear-eyed vision of three former surgeons general, who are calling for doctors to stop performing surgery on people who don’t need it: intersex children, who are born with bodies that don’t fit neatly into typical male or female boxes.
As much as 1.7% of the population is estimated to have intersex traits, while newborns’ genitals get medical attention in an estimated one in 2,000 births.
For decades, intersex people have suffered deeply harmful and medically unnecessary genital surgeries, performed in infancy and without their consent, despite the fact that these surgeries can almost always be delayed until the intersex individual can participate in the decision-making process.
In medical school, we didn’t spend much time on intersex care, but when we did study it, the emphasis was on what we could do to “fix” intersex: remove “abnormal” gonads, rebuild “shortened” vaginas and alter the appearance of “ambiguous” genitalia. These operations seemed viable in a textbook.
In reality, however, these surgeries can lead to complications that result in chronic pain, impaired sexual sensation, depression, posttraumatic stress disorder and gender dysphoria.
It’s becoming increasingly apparent that intersex doesn’t need to be fixed. As former U.S. Surgeons General Joycelyn Elders, David Satcher and Richard Carmona stated in a report recently published by the think tank the Palm Center, “There is insufficient evidence that growing up with atypical genitalia leads to psychosocial distress.”
This is the first time that such a prominent group of physician leaders has vocalized what many have advocated for more than two decades: Irreversible, nonconsensual and medically unnecessary surgeries on children need to stop.
No one understands better than I how slowly doctors’ practice patterns change when it comes to intersex. In 2008, well after an American Academy of Pediatrics statement suggested that some intersex surgeries could be delayed or deferred, I participated in a surgery to remove the internal testes of a girl with complete androgen insensitivity syndrome, or CAIS. These patients generally appear typically female, but have XY chromosomes, lack a uterus and have testes in their abdomen. Removing this young patient’s testes made her menopausal, forcing her to take hormone replacement therapy that still has not been perfected for use in teens.
It was once thought that these gonads had a high chance of malignancy, and there is indeed a high potential for malignancy after puberty in certain forms of intersex. In CAIS, however, the risk of malignancy is just 1% to 2%, much lower than a woman’s lifetime risk of breast cancer. Screening is now considered a safe and sometimes preferable option to gonadectomy.
The knowledge that I may have performed an unnecessary surgery on a teenager has haunted me since, prompting me to write a novel featuring an intersex main character. I hoped to shed light on a population that the medical profession has too often ignored.
The intersex community has been living with the horrific consequences of surgical management for years, while the Societies for Pediatric Urology has failed to issue a statement recommending that surgery be delayed until children can give informed consent. The surgeons general, by contrast, conclude that “when an individual is born with atypical genitalia that pose no physical risk, treatment should focus not on surgical intervention but on psychosocial and educational support for the family and child.”
As Drs. Elders, Satcher and Carmona have shown, the medical profession can no longer stand by and hope that individual surgeons will stop doing unnecessary intersex surgeries, some of which have been labeled as human rights violations by the UN, World Health Organization and Amnesty International.
I sincerely hope that the rest of the medical community will heed the recommendations of the surgeons general, remembering the oath they took at the beginning of medical school to do no harm.
Gregorio is a urologist. Her debut novel, “None of the Above,” was a Lambda Literary Awards finalist.
