Random Things of Rokitansky Syndrome That Affects 1 In 5,000 Women (13 items)

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  (#1) Rokitansky Syndrome Occurs In The Womb

  The good news is that if you're reading this and currently have a vagina, you do not have Rokitansky syndrome, nor will you get it later in life. The genetic abnormality occurs in the womb, possibly around 20 weeks. While the female fetus develops, the reproductive system develops out of the Mullerian ducts. One of these ducts is in charge of creating the vagina and uterus, while the other develops into the fallopian tubes. Scientists think that these ducts don't develop properly, thus causing Rokitansky syndrome.
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  (#2) What Causes Rokitansky Syndrome?

  There's no confirmed cause of Rokitansky syndrome, and no one has found an environmental link to the development of MKRH. And though researchers know that MKRH affects genes, they also know that different genes can cause MKRH - it's not the same gene affected each time.  At this point, it's not known why some women and have it and others don't. It may be random. However, it's believed that it can be passed down through families.
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  (#3) You May Or May Not Have A Vagina And Uterus

  Some women with MRKH have no vaginal opening at all; others have a very small vaginal opening. Some women have a uterus; others do not. Some may have a small or undeveloped uterus; unfortunately, these women still cannot carry a child. There is no "one-size-fits-all" when it comes to the reproductive systems of people with MRKH.
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  (#4) How Do You Know If You Have MKRH?

  Most young women with MKRH don't realize it until they don't start their period as teens, and this is typically the point when MKRH is diagnosed by a doctor. Not all women with MKRH are completely missing a vagina, though - it may just be underdeveloped. Some with an undeveloped vagina will experience difficulty or pain with sexual intercourse, another possible first indicator of MKRH. 
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  (#5) 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. 
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  (#6) 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. 
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  (#7) 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. 
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  (#8) 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. 
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  (#9) Rokitansky Syndrome Can Affect Your Fertility (But There's Hope)

  If you have Rokitansky syndrome and you do not have a uterus, or have an underdeveloped uterus, you will not be able to carry a pregnancy. Some women choose to use a surrogate or adopt. 

  However, recent advances in medicine have shown success in uterine transplants. Five women with transplanted uteruses have given birth in Sweden since 2014, and the Cleveland Clinic in the US is seeking to follow suit. 

  The first baby from a transplanted uterus was born in December 2017 in Dallas, Texas at Baylor University Medical Center. Most women in Baylor's transplant trial have Rokitansky syndrome. 
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  (#10) No One Can Tell If You Have Rokitansky Syndrome

  Women with Rokitansky syndrome still go through puberty and develop normally. The external genitalia is fully formed and looks typical. If a woman chooses to construct a vagina with surgery, a sexual partner would not be able to tell, unless the women opts to tell them. 
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  (#11) You're Female Even If You Don't Have A Vagina

  Young women diagnosed with Rokitansky syndrome sometimes question if they're a woman if they do not have a vagina or uterus.  The answer is yes. Women with Rokitansky syndrome still have 46XX chromosomes. 

  Women with MRKH deal with many of the same health issues as women born with vaginas. They can still get sexually transmitted diseases, still need regular gynecological exams, and should still get the HPV vaccine. Feminists have been working hard to dispel the myth that a woman's identity is dependent on her ability to want or conceive children as well. So if you have MRKH and opt not to have surgery or have children, you are still female.
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  (#12) Is There A Male Equivalent To Rokitansky Syndrome?

  It may seem like women get the short end of the stick when it comes to reproductive problems. However, men aren't without their fair share of reproductive woes. 

  Phimosis, for example, is when the foreskin gets too tight to be pulled back. Priapism is an erection that lasts more than four hours, and not from Viagra overuse. 

  Hypospadias, the closest equivalent to Rokitansky's syndrome, is when the uretha is not at the head of the penis. Like Rokitansky's syndrome, this defect occurs while in the womb. However, it's far more common, occurring in about 1 in 1,000 live births. 
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  (#13) Hypoplasia Can Take Many Forms

  Hyoplasia is the general term used for undeveloped organs. Aside from the reproductive organs in Rokitansky's syndrome, hypoplasia can affect anything from a tooth to testicles to lungs. Cerebellar hypoplasia affects the brain, causing developmental delays. Most patients with cerebellar hypoplasia have abnormal movement and behavior.

  Enamel hypoplasia, affecting the tooth, leaves the tooth open to decay as there is no enamel there to protect it. This can cause major oral problems, sometimes requiring a tooth to be pulled. Unlike most occurrences of hypoplasia, enamel hypoplasia can be caused hereditarily or environmentally. 

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