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MRKH - Mayer Rokitansky Kuster Hauser Syndrome

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  • sourpuss
    replied
    Welcome AMM.

    WH does not allow links to outside sites. But please feel free to use this forum for any support you need or can give.

    Leave a comment:


  • AMM
    replied
    MRKH

    Hi everyone,

    I just wanted to see if there is anyone else out there who would be interested in starting a support network for those with Mayer-Rokitansky-Kuster-Hauser syndrome. I was diagnosed at the age of 15 and I live in Canada where there is no active support network. My aim is to facilitate a dialogue for others out there (not just in Canada but internationally).

    **edit to remove link**

    This is the first time I am sharing my experiences publicly and I am hoping that in doing so that I can encourage others like myself to also share their experiences. So please feel free to share your experiences...

    Cheers,
    AMM

    Leave a comment:


  • CHANDLERS WISH
    replied
    OP did not come back to reply to this thread, as Sebbie has created a new one, this thread is now closed.

    CW

    Leave a comment:


  • Sebbie
    replied
    Hi i am 17 and i only found out that i have got this and it would be nice if i can talk to someone who has got it. So you can tell me what it is like if you had gone through it or if you want to talk to someone who has got it. When i am trying to talk to someone about it they don't understand about it because they are not going through it and i would love to talk to someone who is or has. Also i am new to this web-site.

    So if you want to talk about it just contact me, I would like it

    Leave a comment:


  • adena17
    replied
    Hi Nic,

    I was also diagnosed with MRKH a week after my 18th birthday, I am 26 now. I have been looking around for some information on MRKH and found two yahoo groups that are pretty informative. One is "askaboutMRKH" and the other is "mrkh-grrls". You would need to create a yahoo id and then ask permission to join the group as it is strictly for women with MRKH. I have been reading posts for the last 6 months or so and have found it to be a great group of women that range in ages and come from all over the world. Good luck! - Adena

    Leave a comment:


  • strong gal
    replied
    i have it

    i came across your post on google. i am a 29 yr old woman and i was diagnosed with mrkh at the age of 16. i had to have a hysterectamy at 16. this is the first time i have ever spoken publicly about this- it is very hard to live with physically & psychologily. i would be happy to share my experiences with you.

    Leave a comment:


  • Lauren1983
    replied
    Hi Nic,

    I came across your post while searching about the disease on Google. I was diagnosed with this about 10 years ago, and have since then had surgery to correct the problem. I am open to answer any questions you may have! Im 26 years old... just in case you were wondering.

    Its so nice to finally find others who have this condition.

    Lauren

    Leave a comment:


  • CHANDLERS WISH
    replied
    1 in 5000 is rare but not really when you equate how many people there are in the world, start googling the heading and I am sure you will find alot of areas you can get support from,

    I had not heard of it until I googled it.

    But, it's suggesting that "surgery" is the last resort and it will not necessarily stop an active sexual life, in-fact some ladies have increased their sexual life thus increased the size internally of their vigina.

    My take of what I read was, it's a congenital absence of teh vagina, fallopian tubes, cervix and uterus where external vigina is normal.

    Basically born without a uterus or partial vigina.

    The search I took also said other symptons can occur such as skeletal problems or kidney problems so take lots of calcium and drink lots of water as well...

    I researched so that those whom don't know the "name" but may have the problem can answer you.

    Hope it helped.

    CW

    Leave a comment:


  • moremath
    replied
    Can you tell us what the syndrome does or what the symptoms are? Since it is rare there maybe people out there who have the symptoms, but are having trouble getting diagnosed.

    Leave a comment:


  • Nicliz
    started a topic MRKH - Mayer Rokitansky Kuster Hauser Syndrome

    MRKH - Mayer Rokitansky Kuster Hauser Syndrome

    Anyone heard of this? Have this? Know anyone with this? I got diagnosed with it 7 years ago but only got a name for it this week. I realise it is rare and there is no specific support forums for it so I am looking for my own support network instead.

    Nic
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