MRKH Syndrome: What It's Actually Like For Girls Born Without A Vagina
Wake Forest Institute for Regenerative Medicine
"Typically, women with MRKH lack a fully functional uterus, cervix and upper vaginal canal," explains Beautiful You MRKH Foundation. "They have normal external genitalia and breast development, and often have a small external vaginal opening, called a 'dimple,' that looks like a hymen."
About 1 in 4,500 girls are born with this condition. So what's it actually like?
Because they don't have a uterus, women with MRKH can't carry a pregnancy and usually don't menstruate. They do, however, have functional ovaries and fallopian tubes, and can often have biological children through assisted reproduction. Since an upper vaginal canal may be missing completely, intercourse, to the extent that it's possible, is usually painful.
Women with MRKH may also have problems with their kidneys, skeletal abnormalities, hearing loss, and heart defects. Still, some describe the psychological toll on teenagers - when women typically are diagnosed - as the hardest part.
"Young women diagnosed with MRKH syndrome suffer from extreme anxiety and very high psychological distress when they are told they have no uterus and vagina," researchers noted in a recent study of the syndrome.
"I was suddenly and shamefully different," wrote one woman, in an essay about her diagnosis.
In 2013, the newly crowned Miss Michigan, Jaclyn Schultz, came out publicly to say that she was born with MRKH. "It's really isolating, and it's scary," Schultz told U.S. News, recalling her diagnosis as a teenager. "I'm coming out with it [now] because it's really nothing to be ashamed about."
Here's a full video of her speaking with U.S. News:
Schultz, who became a spokesperson for Beautiful You MRKH Foundation, also sat with her mother for an interview with ABC News in Detroit. Her mother explained her bewilderment when doctors asked if her teenage daughter had undergone a hysterectomy. "I'm not sure what I'm looking at," she recalled one doctor saying.
Traditional interventions for MRKH had a complication rate of up to 75%, The Verge noted, which makes the possibility of the new technique promising - even though the recent pilot study was very small. Doctors will have a better sense of how effective the new treatment is after it's been used in more, and more varied, patients.
Still, the new procedure has been very successful in the four women, who have now been living with the lab-grown vaginas for up to eight years.
"When I discovered that there was this possibility available to me, I was very happy," said one of the patients, whose name was withheld, in a video interview. "It is important to let other girls that have the same problem know that it doesn't end knowing that you have the disease, because there is a treatment and you can have a normal life."
"Truly I feel fortunate because I have a normal life," she added. "Completely normal."
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