(ABC News Photo Illustration)
"There are probably about seven-and-a-half thousand people, women, in the U.S. with the condition," said Dr. Charmian Quigley, a pediatric endocrinologist.
Despite the male chromosomes, Quigley said, women with AIS are just that -- women.
"They have a vagina, like anybody else's," she said, "but it's basically just a pouch, it's not connected to a uterus. There is no uterus. But what they have internally is testes that you would typically find in a male."
It turns out the doctors had lied to Atwood about having twisted ovaries. She really had internal testicles.
All of us, men and women, have a mix of male and female hormones running through our systems. And as you might expect, the testes of women with AIS produce huge amounts of the typically male hormone testosterone. But here's the hitch: their bodies can't process any of it. And amazingly, they turn it into the typically female hormone estrogen, giving them much more estrogen than the average woman.
These women don't get acne, and have no body odor and minimal sweating. In essence, they are the furthest thing from a male that there could be.
So, why keep it a secret from them? Quigley explained that there was a concept that "if you told them that they had a Y chromosome, or a testicle inside them, but they were externally female, they would completely meltdown."
She even showed ABC News a 1970s medical textbook that says, "It is of no benefit to disclose that the gonads were testes instead of ovaries."
It's a lie doctors have been telling since about 1953, when the syndrome was formally identified. For Atwood, it was the discovery of that lie that shattered her self-image and drove her to sleep with many men in an effort to prove her femininity.
And as for the act of sex, it's pretty much the same. Women with AIS can have orgasms just like the rest of us. But they say the lies about their conditions can interfere with intimacy and become far more toxic than the actual diagnosis.
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