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MRKH Syndrome Left This Woman Without a Functioning Vagina

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 "We have a responsibility to normalize differences," Ally Hensley shared on Instagram before opening up about living with this rare condition.

MRKH-Mayer-Rokitansky-Kuster-Hauser-Syndrome-GettyImages-1011842306CREDIT: GETTY IMAGES

This story originally appeared on Health.com by Korin Miller.

Ally Hensley was born with a condition called MRKH that left her with a very small, non-functioning vaginal opening. But instead of feeling shame, Hensley has become an advocate and educator.

She recently shared an Instagram video about MRKH, which is short for Mayer-Rokitansky-Küster-Hauser syndrome. In the video, she explains the process she used to lengthen her vagina, which was only "the length of a fingernail," she said.

"There is no such thing as a 'normal body,'" Hensley wrote in the caption, before opening up about her journey with MRKH, which one in 4,000-5,000 infant girls is born with every year.

"Whilst no one diagnosis is ever the same, people diagnosed with MRKH will face varying degrees of trauma, shame and personal debates asking, 'what is wrong with me?'" Hensley wrote.

Hensley went into detail about the dilation process she unterwent as a teenager to create a vagina for herself. "Less than a month after my diagnosis, I was on a high-speed train to London to create my vagina," she wrote. "This form of dilatory treatment was my chance to take control during a time of personal chaos."

To lengthen her vagina, she would have to lay on her back, spread her legs, and insert a dilator. "I will never forget this position," she wrote over the video.

Hensley then demonstrated how she actually created a vagina, using a cantaloupe as a substitute for a vagina. Hensley said she'd push a dilator into her vagina for 40 minutes each day, building up to bigger dilators with time. "Nine months later, I had created a vagina," she wrote. "Externally, you would never know."

Hensley also revealed that she has experienced infertility as a result of her condition. "Whilst disclosing the infertility facts to our new-to-be partners or inner circles is terrifying, the sadness feels a little softer (to me)," she wrote.

Hensley's video is eye-opening yet empowering, and it probably raises some questions about MRKH. Here's what you need to know.

What is MRKH?

MRKH is a disorder that affects the female reproductive system, Medline Plus explains. Women who have the condition usually don't have periods because their uterus is either absent or underdeveloped, women's health expert Jennifer Wider, MD, tells Health. Typically, they have an absent or underdeveloped vagina as well, yet their external genitalia usually looks no different than women without MRKH.

Often the first sign that a woman has MRKH syndrome is when she doesn't develop a period by age 16, Christine Greves, MD, ob-gyn at the Winnie Palmer Hospital for Women and Babies in Orlando, Florida, tells Health. "Women with MRKH usually have functioning ovaries, though," she says, along with normal breast and pubic hair development. "From the outside, you really can't tell," Dr. Greves says.

What causes MRKH?

It's not entirely known, but it may have to do with a genetic issue, according to Medline Plus. At a basic level, the reproductive system differences that happen with MRKH are caused by incomplete development of the Müllerian duct, a structure in the embryo that develops into the uterus, fallopian tubes, cervix, and the upper part of the vagina. Why this happens isn't unclear, though.

How is MRKH treated?

Some women will use spacers or vaginal dilators to "create or expand the small amount of vaginal tissue," Dr. Wider says. Other women may choose to undergo surgery to use skin grafts to create a larger vagina, adds Dr. Greves.

While infertility is an issue for women with MRKH because they typically do not have a functioning uterus, Dr. Greves says there are options. "I have a patient who has MRKH and she had a surrogate carry her baby," she says. "Now, she's a mama."

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