“It affects every important developmental milestone of a woman’s life.”
That means incomplete reproductive organs, not getting a period, and not being able to carry children. It's a congenital disorder, meaning it's present at birth, and it's estimated to affect between 1 in 4,000-5,000 women.
The name, MRKH, is actually an acronym for the doctors who first discovered it: Mayer-Rokitansky-Kuster-Hauser syndrome. It's also sometimes referred to as Mullerian Agenesis, Vaginal Agenesis, or Vaginal Aplasia. Experts aren't sure what causes it, but genetics seem to play a role. For some, MRKH can also be associated with kidney, hearing, skeletal, or heart complications, which is referred to as MRKH type II or MURCS Association.
We spoke to two women with MRKH: Laura, co-founder of the Mid-Atlantic MRKH Foundation and Amy Lossie, Ph.D., president of Beautiful You MRKH Foundation. Both of them were diagnosed at age 16. Now, they run organizations aimed at connecting women with MRKH and providing helpful resources they wish they'd had when they were diagnosed. Here's what they want people know about it.
MRKH affects the development of the internal reproductive tract, not the external genitalia, so it has nothing to do the with the vulva, clitoris, pubic hair, etc. It can also present very differently in different people — so one woman might have a small vaginal opening while another might have a fully functioning vaginal canal that's slightly shorter or narrower than usual. Some women are missing their entire uterus, while others might have some remnants still there.
« Some articles will say 'women born without vaginas,' like it's a freak factor, an abnormality, » says Laura. « I think the way it's presented is a little bit hurtful. We're also people — it's not just about our sexual organs. »