MRKH FAQ-english

facts, answers to most frequently asked questions and Historical information about MRKH Syndrome 

  • In Norway approximately 3-6 girls per year are born with MRKH
  • It is  approximately 16,000 girls born world wide each year affected by MRKH
  • MRKH is short for Mayer Rokitansky Küster Hauser Syndrome
  • The syndrome was described by Mayer in 1829 and Rokitansky in 1838, including agenesis of the uterus and vagina due to abnormal development of the Müllerian duct.
  • Rokitansky reported uterine and vaginal agenesis ( malformation / absence) , and Meyer described the various vaginal duplications .
  • It is a congenital condition that affects the female reproductive system
  • MRKH develops before 12 weeks of gestation
  • MRKH can affect the skelett , hearing , urinary tract and kidneys
  • In 1910,Kuster recognized urological correlations with renal ectopy or agenesis , along with skeletal abnormalities
  • Some may have one kidney instead of two
  • Approximately 3 % of girls will have some kind of  hearing loss
  • Some may have spinal problems such as scoliosis ( curvature of the spine)
  • The syndrome develops already at the embryonic stage , the reproductive system begins to grow but does not develop complete. Why this happens is still not answered .
  • Girls with MRKH have female chromosomes XX , and they have not found that there is something wrong with the female gene such as , for example  within Turner syndrome.
  • Girls with MRKH  have a shorter vagina and  in a few cases, absent .
  • Usually the uterus is small or absent
  • Girls with MRKH have normal ovaries and fallopian tubes
  • Girls with MRKH ovulate once a month and get all the other symptomes associated with menstruation apart from bleeding, due to missing or defective uterus. The eggs are microscopic and dissolve once they have left the ovary.
  • In the early 1980’s  Dr.Ingram invented dildos of different sizes which were then mounted on a bike seat . The women were then given training in how to dildate while they rode their bikes  with these custom seats. This method is not recommended as it is uncomfortable and heavy air use .(crazy ! Who would want to use that method anyway? )
  • Women with MRKH can have biological children through  use of surrogacy
  • In the U.S.women with MRKH is not accepted in the military
  • Norwegian girls with MRKH can enlist in the Norwegian military as long as they do not have any of the side symptoms that can occur in girls with MRKH ( skeleton , kidneys , hearing and heart defects ) and taken the other health requirements are met.
  • The Austrian doctor Karl von Rokitansky of the R in MRKH was one of the 2 pathologists who autopsied Beethoven’s ears.
  • Queen Amalia of Greece was found post mortem to have had the syndrome. Her inability to provide an heir contributed to the downfall of her husband , King Otto
  • Hitlers wife Eva Braun had MRKH, thats why they had no children. (I guess that is a good thing ! )
  • General lack of knowledge and awareness among gynecologists, physicians and nurses about MRKH , not only in Norway but in most countries .

please feel free to leave a comment if you want to add something on the faq list or if you have a question you did not find an answer for. If you want to email us use mrkh@mrkhnorge.no and re:faq please.

4 Comments on “MRKH FAQ-english

  1. My daughter has MRKH, minimal uterus, able to pratice sex. She has huge pains (think because of the egg ovulation) Is there anything to help her, better than Ppills, as they only take the top of the pains??

    Lik

    • Hi Aninette , I had the same problem, I also had a small defected uterus. In my case they removed the uterus rest and the pain went away. But if that is not an option I dont think the doctors can offer any better than Ppills.. A warm bath may ease some of the pain…Have you asked the doctors to check to make sure its not something else causing the pain? Sometimes the blood is staying inside the uterus rests with nowhere to go and grows each month and the pain grows with it. Thats what happened in my case. Make sure they check her proparly..

      Lik

      • Thank you for the answer. I will make her talk to the doctor.

        Lik

  2. Can someone with MRKH have Norman vaginal secretion during sex?

    Lik

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