A British teenager said she was in “total shock” to learn that she had been born without a vagina.
During a routine visit to the doctor, Jacqui Beck, 17, mentioned that she hadn’t started getting her periods. Tests soon showed that she had MRKH syndrome, a genetic condition that meant she had been born without a vagina, womb or cervix.
“I left the doctor’s [office] in tears. I would never know what it was like to give birth, be pregnant, have a period. All the things I had imagined doing suddenly got erased from my future,” Beck told the Daily Mail. “I was really angry and felt like I wasn’t a real woman any more.”
Shocking as it may seem, Beck is not alone. In fact, her condition isn’t even especially rare. According to the National Institutes of Health, Mayer-Rokitansky-Küster-Hauser syndrome (named for the physicians that first diagnosed it), or MRKH, affects one in 4,500 newborn girls.
The condition mainly affects the reproductive system and “causes the vagina and uterus to be underdeveloped or absent.” According to the NIH, it mostly occurs in people with no family history of the disorder.
The external genitalia are normal, and women with MRKH have functioning ovaries and undergo puberty. The condition is usually detected once someone with MRKH tries to have sex, or doesn’t begin having periods by age 16.
Like Beck, Christina Ruth was diagnosed with MRKH at age 17. She spoke out about her condition in May, after graduating from high school. She said the shame associated with the disorder can be difficult to deal with.
“I had two doctors ask me why I hadn’t fixed myself yet,” Ruth told Lancaster Online at the time. “That’s completely inappropriate. I was born this way and should not be made to feel like I am second-rate because of it.”
Although the condition has no cure, there are several treatment options available to women with MRKH. Medical procedures such as dilation or surgery can help create a vaginal canal in women with MRKH, allowing them to have intercourse. Eggs can be removed and fertilized to be used in surrogacy.
Several support communities for women with MRKH exist. The Beautiful You MRKH Foundation, a non-profit group, seeks to “eliminate the shame and isolation that often accompanies a diagnosis of MRKH.”
Beck, now 19, is also taking ownership of her condition.
“I’m a hopeless romantic and I see it as a great test of someone’s character. Instead of focusing on it putting off men, I actually think it will help me find ‘the one’,” Beck told the Daily Mail.
“I want to be upfront with any men I meet and tell them straight away about my condition… If they run at the mention of MRKH then I don’t want to be intimate with them.”