Monday, October 31, 2016
While her friends were shopping for cute bras and debating tampons versus pads, Kimberly Zieselman had yet to start her period. So at 15 years old, her parents insisted on taking her to the doctor. Eventually, a reproductive oncologist at Massachusetts General Hospital told her parents that their daughter's uterus and ovaries were only partially formed — and would likely soon become cancerous. The doctors pushed them to consent to a surgery to remove them, essentially a hysterectomy. She spent her 16th birthday that summer recuperating from the operation, but other scars wouldn't heal.
"On some level, I knew I was not being told the whole truth," Kimberly says. "But I was afraid to ask questions. I was the kid who did what I was told, who wanted to please adults and doctors. I sensed something awful was being hidden from me, and I didn't know who I could trust."
It wasn't until 26 years later that she learned the truth: She was intersex. Specifically, Kimberly has Androgen Insensitivity Syndrome (AIS), one of more than 30 different intersex conditions. Externally, she looks typically female, but what the doctors removed, she later discovered, were internal testes. (She never had a uterus or ovaries at all.) These produced testosterone, which her body then converted to estrogen. In Kimberly's case, leaving the testes intact would have allowed her body to self-regulate and age without synthetic hormones.
When she found out, Kimberly was 41 and a married mother of adopted twin girls living in the suburbs. "It was very disorienting," she says. "It took that foundation that your life is built on and pulled it out from under me."
While Kimberly felt her whole world was upended, her husband, Steven, was almost blasé when she told him. "He was like, 'Okay, it doesn't change anything,'" she says. Although she appreciated his understanding, she wanted him to recognize her turmoil. "I was confused and trying to figure out what it really did mean for me to have XY chromosomes."
It meant, essentially, that she's part of the thousands of people born each year with differences in their sex characteristics or differences of sex development (DSD). Usually, these variations occur before birth — in genes, chromosomes, genitals, body hair or reproductive organs. Widely accepted statistics put the number of intersex births at 1 in 1,500, but because there are more than 30 intersex conditions, some estimate it's more than 1 in 150 births.