Identity

'Why Me?’: When You’re Born Without a Vagina, Cervix, or Uterus

MKRH affects one in 5,000 women—which means that the condition is nowhere near as rare as you might think. For those diagnosed in their teens, sex and relationships are especially tough.
June 15, 2016, 2:00pm
Photo by Simone Becchetti via Stocksy

"It's been five years now since I was diagnosed having MRKH syndrome. I want to marry and have kids some day and have a happy family but I'm afraid I cannot do that anymore. I had a boyfriend before and we had intimate moments together where I told him about my condition."

Yren, who is posting on one of many forums and Facebook groups for women with MRKH, says that she didn't believe he loved her and dumped him instead. "I don't know what to do because every time I thought about my condition I feel hopeless and self-pity."

There are small secret pockets of identical sadness and confusion scattered across the Internet as women with MRKH reach out to each other. Mayer-Rokitansky-Küster-Hauser Syndrome is a syndrome where girls are born without a vagina, cervix, and uterus. It's something that is almost never discussed—we're too squeamish for that, apparently—but it affects one in 5,000 women.

That makes it rare, but probably less rare than many would imagine. There is often acute embarrassment around talking about MRKH. Online forums help women connect with each other, and allow them to vent their frustrations without being labelled "freaks."

Since [my diagnosis] I have this question of 'Why me?'

One girl, Don, from the Philippines, was 17 years old when she found out she had MRKH after her period failed to arrive. "My OB [gynecologist] explained but I resisted to listen and accept it. And since then I have this question of 'Why me?'"

When there's a one in 5,000 chance you're going to be born without a womb, and with either a non-existent or a very shallow vagina, that seems like the natural question. "Why me?" is the recurring theme in almost every post.

However, there is a wealth of expert support out there for women lucky enough to have access to sound healthcare and expert guidance. Cecilia Paul—not her real name—is a former NHS MRKH specialist who has written a novel about a girl born with the condition. In Elizabeth Just 16, Paul tries to convey the life of a regular girl who happens to have this condition.

**Read more: When *Teenage* Girls Find Out They're Genetically Male**

She's not a writer, but a gynecologist by profession, so when I refer to "MRKH sufferers," Paul gently reminds that such words only enhance the stigma around the condition. "We don't like to use the word 'sufferers' as it makes it worse for them as it has such negative connotations. We just call them 'our girls,'" she says.

Women generally realize they have the condition in their mid to late teens, when their period fails to materialize or when they discover they are unable to have sex. As the external genitalia is not affected, it's not the sort of thing that can be diagnosed at birth. There are two main problems that MRKH specialists have to tackle, says Paul, who works in the one center in the UK where every girl with MRKH is referred to. "The first is that the public are ignorant of the condition. And the girls are so embarrassed by it that they keep it a secret which means that people don't hear about it much.

"We always tell our girls that they are normal apart from this one abnormality, but they find it hard to understand. They ask how they can be a girl if they have it, and they say things like 'I am a freak,' which is hard to hear."

Women with MRKH are often diagnosed in their mid to late teens. Photo via Alexey Kuzma via Stocksy.

The terror that some teenagers feel is tough even for specialists to handle. "There's a lot of fear, a lack of understanding at the first diagnosis and the question, 'What am I?' But if they can understand the condition then it helps them to understand themselves better," says Paul. "They are females without a womb and with underdeveloped vaginas. I tell them that they are female according to their chromosomes.

"They have functioning ovaries and female hormones so they are able to go for IVF surrogacy," she adds. "They also have a female shape, breasts, body hair, genitalia—everything else."

But it's not always easy to convince women with MRKH that they are real women, whatever that term means. "I have heard some terrible stories," says Paul. "Terrible—people can be ignorantly innocent and cruelly ignorant." She declines to go into detail about her patients, but MKRH forums are awash with accounts of rape and generalized fear around sex.

A parallel her girls often draw is between them and transgender people. Her patients often see a comparable struggle in their confusion over their gender. "I'm always having to tell the girls not to compare themselves to them—I have to tell them it's just totally different."

Not everyone feels this way. Tabitha Taya, an MRKH awareness advocate and yoga teacher channeled her diagnosis into helping other people with the condition. Taya was diagnosed when she was 15. Now 29, she set up Living MRKH three years ago to help support other women and make people aware of the condition before diagnosis. She tells Broadly that a diagnosis in 2016 is nowhere near as isolating as it was ten years ago.

"There is a slow shift [in understanding] at the moment. I've seen a change in the MRKH community and people talking to their friends and family—and strength in numbers now we have such strong communities on Facebook and on the Internet," she says. "They're not going through the same isolation during the early days—they already know there's a community they can turn to for questions."

I was just thankful I was alive and I had a body. Because I was born this way, it was just who I was.

Unlike many of Paul's patients, Taya says she didn't ask "why me" or agonize over whether she was a "real woman." Some women who are very keen on the idea of getting pregnant will go for a newly available womb transplant (although pregnancy is not yet guaranteed) and others "will go for surrogacy or adoption," Taya says. "It depends what motherhood means to you. To me motherhood means guiding someone in your care [and not just carrying it in your womb]."

Taya's mother died three months before she discovered she had MRKH, meaning she had to rely on her mother's friends and her own friends for support. She is philosophical about the hand dealt to her. "The first week I tried to understand and contemplate what it meant for my life—if I can't change it I need to understand and accept it. But that's quite hard for some women. I was just thankful I was alive and I had a body. Because I was born this way, it was just who I was.

"It's a condition that not many people have so I had to understand it in order to tell people around me. We were all learning together. All they could offer was sympathy rather than empathy."

**Read more: Why Young *Women* All Over the World Are Still Dying in Childbirth**

Sex wasn't something she stressed about. "If I had any sexual partners I told them from the outset, so they'd know the feeling would be different and they wouldn't hurt me," though she adds that "some of my MRKH sisters have a fear of rejection, and they don't understand they can be sexually active."

Indeed, there are options for women with shallow or underdeveloped vaginas to have a more pronounced tract developed, making vaginal intercourse as normal as it ever is. Paul says surgery was often a very good option, with only 25 percent of the girls who had sex after surgery experiencing any pain during sex (but only from a lack of natural lubrication). Taya tells Broadly that surgery is "not favored in the UK anymore" and that she opted to dilate her vagina using a dilator, the same implement that trans women use after vaginoplasty to ensure their neo-vagina retains depth and width.

But the fear of passing on the condition to their kids can often put women off having biological children, despite the fact that no daughters born via IVF from MRKH-diagnosed women have the condition themselves.

Jaclyn Misch, a media worker with MRKH, was crowned Miss Michigan USA in 2013 and appeared on the reality show Survivor in 2014. She used her platform to highlight the condition to the public, and partnered with The Beautiful You MRKH Foundation. "In 2003, my mom found nothing on the internet related to MRKH except a few scholarly articles," she says, and adds that supporting girls and mothers is a passion of hers.

Misch says that the stigma around MRKH is often because the condition calls into question old, conservative values of women and womanhood. "Generally speaking, women's 'role' in society has been perceived as the child-bearers, and family caregiver since the beginning of time," she tells Broadly.

"In many cultures, the sole purpose of a woman was, and is, to give her husband an heir. MRKH challenges these views of womanhood and what a woman's purpose is in life. We've come a long way in the past 120 years: Women have gained a voice and spoken out against these sexist views."

Until the rest of society recalibrates its idea of what being a woman entails, forums will still be full of upset girls asking: "Why me?" But with people like Misch, Taya and Paul on hand, women with MRKH should be increasingly able to experience the usual joys and frustrations that womanhood brings.