Briana Fletcher tells Health that it doesn't stop her from having a "normal" life.

Blake Bakkila
March 05, 2018

Going through life with a rare genetic disorder can be an isolating experience. But one woman who has a condition that caused her to be born with a partial vagina has decided to share her story.

Briana Fletcher took to Instagram to speak out about having Mayer-Rokitansky-Küster-Hauser syndrome (MRKH) and how it's affected her life—then spoke to Health about what the future hold in terms of sex and having a family.

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“I was born without my uterus and missing the upper ⅔ of my vagina,” the 23-year-old from Nova Scotia, Canada, captioned a selfie posted a few weeks ago. “I have normal ovaries, and perfect XX chromosomes, but I do not have a period.”

I was born without my uterus and missing the upper 2/3 of my vagina. I have normal ovaries, and perfect XX chromosomes, but I do not have a period. I was diagnosed at age 16 with MRKH, after not having my period. I had bloodwork, an MRI and ultrasounds to check my reproductive system. It felt invasive, and confrontational. I was told my only option to have a family was to adopt. The gynecologist was blunt when she explained it. She confessed she didn't know much about it and she had never seen a case before. I was overcome with loneliness and emptiness. I'd always wanted a family. I felt robbed of the chance to have that. I furiously searched MRKH in "secret" and tried to read the medical documents Google searches provided me. I did not know anything, and the terminology felt useless. Further Google searches returned the same PDF files again and again. I quit my search. A few years later, something clicked. I typed MRKH into the search bar on Twitter. I held my breath when I hit "enter", and watched in amazement as hit.. after hit.. after hit appeared on my feed. Suddenly, I was not alone. There were others LIKE ME!! I jumped up and down, I screamed, I cried, the dog barked at me (probably thinking I'd lost my mind), and I clicked "Follow" on every single profile. I was connected with the world of Beautiful You MRKH Foundation, Inc. came into my life. Like there was somewhere I BELONGED! The MRKH community has grown and we have made huge strides in fertility treatments and options for having a family. I volunteered bloodwork for a university to study possible genetic links associated with MRKH. I wrote an article for Cosmopolitan magazine on my experience, and created a blog. I've seen the first baby born to a uterus transplant recipient and shed tears reading the news while sitting in class. I shook as I ran to my biology teacher and stumbled over my words telling him the news. We can have a family through surrogacy and in-vitro fertilization, or through adoption. Surrogates are hard to find, and in-vitro fertilization is expensive ($10,000-$30,000 and sometimes more).

A post shared by Briana Fletcher (@msbrianaalee) on

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; as a result, they can't give birth. Individuals with MRKH may also have kidney problems, hearing loss, or spinal abnormalities, according to Boston Children’s Hospital.

MRKH affects about one in every 4,000 to 5,000 women, states the National Organization for Rare Disorders. The exact cause is unknown, but studies suggest it is the result of genetic mutations. Women who have it are born with the condition, yet most are not diagnosed until puberty when they don't start their period.

Fletcher said she was diagnosed at age 16 after a series of tests, including blood work, an MRI, and ultrasounds. “It felt invasive, and confrontational,” she said in her Instagram post. “The gynecologist was blunt when she explained it. She confessed she didn’t know much about it and she had never seen a case before." 

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"I was overcome with loneliness and emptiness. I’d always wanted a family. I felt robbed of the chance to have that,” Fletcher added. Women with MRKH ovulate normally, "but there is no tube for the egg to go into,” Yolanda Smith, MD, an ob-gyn at the University of Michigan, previously told Health

After researching her condition “in secret,” Fletcher became discouraged because there wasn't much information out there. Yet years later, she did a search of MRKH on Twitter—and everything changed. “Suddenly, I was not alone,” she said. “There were others LIKE ME!! I jumped up and down, I screamed, I cried, the dog barked at me (probably thinking I’d lost my mind), and I clicked ‘Follow’ on every single profile.”

Fletcher tells Health that her “very supportive” fiancé knew about her condition before they started dating. She adds that MRKH doesn’t affect their sex life.

“I find if we have sex less frequently, I am a bit tighter down there,” she explains. “And lube is important and foreplay. Also, [we are] exploring other avenues than just penis-in-vagina intercourse, because you can have pleasure without ‘actual’ intercourse.”

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In her Instagram post, Fletcher said she was initially worried about not being able to have a family. But women with MRKH can have kids with the help of assisted reproductive technologies (like IVF) and a gestational carrier.

Fletcher is interested in adoption. “We are looking into adopting an older child or sibling group in our province,” she says. “I would love any child who came into my life. Biology doesn’t make someone a mother.”