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Rokitansky Syndrome Affects 1 In 5,000 Women - But You've Probably Never Heard Of It

Updated September 23, 2021 12.7k views13 items

Talking about medical conditions surrounding the female reproduction system has been seen as taboo for too long. Thankfully, the discourse concerning reproductive health is becoming less off-limits, even if it is a very slow change. We are able to talk more and more about the female body and the reproduction system within it in an open manner, and people with vaginas are able to take more control over their health and learn about potential health issues, such as Rokitansky Syndrome.

1 in 5,000 women suffer from Mayer-Rokitansky-Küster-Hauser Syndrome, a condition that causes the vagina and/or uterus to be underdeveloped or completely absent. Though rare, this condition can be treated. A vagina can be created with the help of surgery and dilators, and women have successfully given live birth with transplanted uteruses. You'd never know a woman had it, though; there are no external effects, as women who have MRKH otherwise develop normally through puberty. Here is everything you need to know about MRKH syndrome, and what to do if you suspect you have it. 

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  • There Are Two Types Of MKRH

    MKRH has two forms: Type 1 and Type 2. Type 1 is pretty straightforward; the vagina and/or uterus are underdeveloped or not developed at all. Otherwise, women with MKRH Type 1 don't have any other associated health problems.

    Type 2, however, involves organs outside the reproductive system. MKRH Type 2 is characterized by kidney and skeletal issues. Sometimes a kidney is missing entirely, deformed, or placed incorrectly in the body. When your renal system is affected, you can experience not only UTIs and kidney stones, but also growth problems. Aside from possible skeletal issues in the spine, 10-25% of those afflicted also experience hearing problems. 

    The good news is that Type 2 is far less common that Type 1, occurring in 1-9 out of 100,000 live births. 

  • No Vagina? You Have Options

    If you don't have a vagina, fear not. Doctors can create a vagina with a two-hour surgery, allowing women with Rokitansky syndrome to have a normal sex life. 

    For those who have an underdeveloped vagina, one can be created by using dilators, which stretch the vagina. Dilators of increasing size are inserted into the vagina for anywhere from half an hour to two hours. Even with surgery, dilators must be used. 

    It's also possible to elect not to create a vagina, though this negates the possibility of what is seen as a traditional vaginal sex life. 

  • There Are A Few Possibilities To Create A Vagina With Surgery

    There are five types of surgeries used to create a vagina, each with its own positives and negatives. All five require general anesthesia, a hospital stay, and the use of dilators afterwards. 

    The McIndoe procedure creates a vagina from a skin graft, whereas the Davydov procedure uses a membrane from abdominal and pelvic cavities. Creating a vagina from the bowel, on the other hand, usually causes ongoing vaginal discharge. 

    The Davydov procedure can be completed in about 1-2 hours and has a success rate of over 95%. Miklos & Moore, the leaders in MRKH surgery, report that the Davydov procedure has fewer complications than the alternatives, and can be completed via laparoscopy (small incisions as opposed to one long cut). Laparoscopy is typically an outpatient procedure; in this case, patients only stay one night in the hospital. If the patient diligently uses the dilators, she can become sexually active in about 6-8 weeks. 

  • Insurance May Not Help With The Reconstructive Surgeries

    If you think that getting a vaginal surgery is as easy as scheduling it at your local hospital, think again. Many first-person accounts of Rokitansky syndrome note that insurance didn't cover their vaginal surgeries. An Indiana woman created a GoFundMe page for her daughter, asking for $11,000 for the surgery and costs to get to Atlanta for the surgery. 237 people raised the money in a little over a year. A young woman in Arizona raised the $15,000 necessary for her surgery; insurance deemed it a cosmetic surgery and wouldn't cover the procedure. Insurance does, however, cover vasectomies for men.