Intersex conditions pose unique challenges for UNC, Duke doctors
When Georgiann Davis was 17, she underwent surgery to remove what doctors called precancerous ovaries.
Years later, as an adult, Davis obtained her medical records. They revealed that what her doctors had removed were actually internal testicles. She said she was never told about her condition.
“Doctors lied to me, and they encouraged my parents to do the same,” she said.
Davis, who is now a sociology professor at the University of Nevada-Las Vegas, was born with a condition in which her body doesn't recognize or respond to testosterone.
She has XY chromosomes, but without the influence of the male hormone, her body developed the external sex organs of someone who is biologically female.
The condition, called complete androgen insensitivity syndrome, is a type of intersex, an umbrella term for people with conditions causing ambiguous genitalia — internal and external sex organs that aren’t clearly defined male or female.
Appearance can range from a misplaced urethral opening to a micropenis or a large, penis-like clitoris.
Dr. Ali Calikoglu is an endocrinologist on a team that works with disorders of sexual development, or DSD, at UNC Hospitals.
“(Having ambiguous genitalia) is less common than many other conditions, but on the other hand, it is more common than most people think,” he said.
Calikoglu estimated that some kind of DSD occurs in one out of every 400 or 500 infants. In his personal experience, he said he sees two to three cases a month.
Depending on which intersex condition a patient has, Calikoglu said ambiguous genitalia can be a sign of something more serious, such as congenital adrenal hyperplasia, in which infants can be at risk of dehydration from not retaining necessary salts and water.
“Some of these conditions that result in ambiguous genitalia may be life threatening, so we approach these patients in a very careful way,” he said. “We always describe a baby with ambiguous genitalia as a medical emergency.”
That description, however, has come under fire from intersex and LGBT activists like Davis, who say it can influence how parents decide to treat their intersex children — leading to what activists view as a long history of performing unnecessary surgeries and omitting parts of medical history.
“We ask parents not to ignore, not to sort of put things under a rug or away in a box somewhere," said Echo Meyer, a psychologist who works with the DSD team at UNC. "So we ask them to sort of be very cognizant of that.”