Amanda MacMillan
August 16, 2017 06:08 PM

A 22-year-old Arizona woman who was born without a vagina or a uterus is crowdfunding money for a life-changing surgery. Kaylee Moats was diagnosed with Mayer-Rokitansky-Küster-Hauser syndrome (MRKH), a rare genetic condition, at age 18.

“When I didn’t get my period but my 12-year-old sister did, we decide to go to the gynecologist,” Moats says in a video focusing on her diagnosis and condition. An ultrasound revealed that Moats has no uterus or cervix, and she wouldn’t be able to get pregnant or carry children.

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After doing more research, Moats discovered that she also had no vagina. Her vulva and labia appear normal from the outside, she says, but “there’s just a little dimpled skin where the hole should be.”

“I would always wonder like where do you even put your tampon if I were to start my period since I couldn’t see where I could put it down there,” Moats explains in the video.

According to the National Organization for Rare Disorders, MRKH affects about one in every 4,000 to 5,000 girls. Why it happens is unknown, but some studies suggest it is caused by genetic mutations, which can either arise spontaneously or be inherited from a parent.

MRKH is congenital, which means that abnormalities form during fetal development and are present at birth. But like Moats, most girls with the condition aren’t diagnosed until they’re teenagers when they don’t start to menstruate.

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Women with MRKH have normally functioning ovaries, and they develop breasts, pubic hair, and external genitalia. But their uterus and vagina are either underdeveloped or absent. Some also have kidney problems, hearing loss, or spinal abnormalities, according to Boston Children’s Hospital.

Because women with MRKH still produce sex hormones, they ovulate normally. “But there is no tube for the egg to go into,” Yolanda Smith, MD, ob-gyn at the University of Michigan, tells Health. “Therefore, it is just released into the pelvic cavity.” (Dr. Smith is not involved in Moats’ care, but she has treated others with MRKH.)

If a woman has no uterus at all, she won’t get a period because there’s no uterine lining to shed, says Dr. Smith. However, some women with MRKH do have a small portion of their uterus, and blood can collect and become trapped there during menstruation. This can be painful and usually requires surgery.

Women with MRKH are encouraged to seek counseling after a diagnosis, to address both physical and psychological issues (like distress and anxiety) that the condition can bring on. As for physical treatments, some women with MRKH have a small vaginal opening that can be enlarged with regular use of dilators—plastic tubes that progressively stretch and widen the opening over weeks or months.

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Others, like Moats, need surgery in order to have vaginal intercourse. “There is a wide range, varying from having no vagina, to a small vaginal dimple, to several centimeters of length,” says Dr. Smith.

But Moats says her insurance company considers this a cosmetic or gender-reassignment surgery, and therefore they won’t cover it. (To be clear, surgery for MRKH would not be “reassigning” a gender; people with this condition already have normal female chromosomes.)

Insurance companies will cover things like vasectomies or Viagra, “yet they won’t cover something like this that is so necessary to a relationship,” Moats’ mother says in the video. “It’s heartbreaking and frustrating.” Deryl Lamb, MD, Moats’ family physician, also appears in the video, adding that “insurance does not consider this as something that would save her life, basically.”

To help pay for the operation, Kaylee’s sister Amanda created a GoFundMe page in June. She wrote that the diagnosis “raises a lot of fears, concerns, and insecurities in Kaylee about her identity and her future.” Kaylee decided to focus on school after receiving the devastating news, Amanda wrote, but now that she’s graduated college, she “knew it was time to get with a doctor and see what could be done.”

Amanda also wrote that the surgery — which the family was told lasts one to two hours and has a 96% success rate — will allow her sister “to be able to have an intimate relationship like any other woman would experience.” Once the story went viral this week, the campaign quickly reached its goal of $15,000.

With the promise of surgery in sight, Moats is looking forward to one day having a normal sex life with her boyfriend or future husband — although she says she’s a “bit nervous to have sex for the first time.” And while she can’t get pregnant herself, Moats also hopes to eventually start a family. Her sister and some friends have even offered to act as surrogates when the time comes.

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Although Dr. Smith has not treated Moats, she says there’s reason to be optimistic. “Women with MRKH live very normal lives and with the help of assisted reproductive technologies (like IVF) and gestational carriers,” she says, they can often have biological children.

For her part, Moats seems determined to see the positive no matter what the outcome. “In the future I hope to have my own family and have a child of my own DNA,” she says in the video. “But if that doesn’t work, because sometimes surrogacy doesn’t always work, then I hope to adopt — and not have MRKH define me.”

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