About

I believe that as a MRKH woman myself, that we should have peer support available to us in Canada (and around the world). So I’m starting here to try and reach out to all of you who know what it means to be an MRKH woman. Be brave. Share your experiences as I share mine.

Note: If you have any questions, please let me know! I have created this blog with the support of Dr. Nathalie Fleming and Dr. Amanda Black at CHEO Hospital in Ottawa. If there are any questions that I cannot answer, I will be sure to forward those questions to them.

Also, if you do not feel comfortable commenting here or if you have any ideas you would like to share with me (to help me improve this resource), please email me at mrkhcanada@gmail.com.

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42 Comments

  1. Aysha said,

    You sounds like an intellegent lady. Intially I was thinking to do pyschology but I am doing health and social care and in university too. Do you think you may become a psychologist and work with MRKH ladies?
    I agree I am from UK though. But I believe support for MRKH is vital world wide!

  2. MRKHCanada said,

    Thank you, Aysha! I would love to counsel not only MRKH women but also others with conditions similar to ourselves (I recently recieved interest from an AIS woman so I would be open to learning about other conditions that constitute congenital abnormalities of the female reproductive tract…we can learn from each other!). I think we can find a way to provide a community for those with or without support and I believe support is absolutely crucial!!!

    • Maria Krasinski said,

      I’m a CAH gal who had infant surgery on my externals (that was bad enough) but thankfully they left my internals alone. I’m stenotic, but i’ve discovered i am much less so after a few years of cortisol analogue therapy. Makes sense. Adrenals now supressed, do not any longer supress my ovaries… so there finally making enough estrogen for me to “stretch”. All those years called a “baby” for finding sex painful. Now, if you know a CAH gal, you know that “baby” does not exactly fit as a description of us 😉 ….. though apparently, my body (if not my mind) needed some outside help to mature. Anyway, I found Esther’s Video inspiring, and hope that i can be a useful part of the conversation. 🙂

      • MRKHCanada said,

        Thank you for sharing your story, Maria! I would love for you to keep in touch. This site isn’t exclusively for MRKH girls because I think we all have things to learn from each other!!! Much love to you!

  3. Aysha said,

    Oh wonderful idea! I have read stories of Ais, Cah etc women. Having support and a good counsellor can make a world of difference! It can help make coping easier! Good luck I can sense you would make an amazing counsellor and make a difference to the lives of many!

  4. Aysha said,

    Wow Drs helped you..thats amazing! Are they your Drs are they specilist in MRKH and similar things? x

  5. MRKHCanada said,

    Aww thats so nice of you to say! Honestly, I think it would be wonderful to all learn from each other and to bring together a community where we can be open about our conditions without fearing judgement!

    Yes, they are totally supportive of my ideas! They do specialize in MRKH and other conditions so their experience is crucial to us! I think anyways.

  6. Miss-Smiley said,

    I agree with you..well said!

  7. Miss-Smiley said,

    Email me I do not know were I put your email!

  8. Miss-Smiley said,

    Thanks Maria for sharing your story I just read it. =D

  9. vgirl29 said,

    I’ve just found your blog when I was searching for entries realting to dilators. I have vaginismus and I’m finding it hard. I’d never heard of any of the above syndromes until I read about them here and then researched them. You are all very brave and inspirational to be sharing your knowledge and supporting each other! Reading other people’s blogs & writing my own is helping me get through this. 🙂

    • MRKHCanada said,

      I am so glad that you stumbled upon this blog and found it helpful! You are very welcome to comment!

  10. Miss-Smiley said,

    vgirl29- Thank you for your nice remarks. I also did not know about MRKH until I was diagnosed! And it is the same story for most. I am glad you found this blog helpful as MRKHCanada said do get posting! I have read about vaginismus, good luck with coping and dealing with that.

  11. Rose said,

    Absolutely love this site. I am a MRKH girl, and wanted some information that went beyond basic description. Thank you for all the time and effort you’ve put into this.

    • MRKHCanada said,

      Thank you Rose! Im so glad you find the site helpful!!! Much love to you and keep visiting!

  12. sunitha said,

    hai i am an MRKH girl,i am indian i found this site helpful can u mail me, i havnt undergone surgery yet, i want to marry and lead a normal life is it possible for me?

    • MRKHCanada said,

      Absolutely! It is possible for you! You deserve all those things. My email is MRKHCanada@gmail.com but I’ll email you because I would love to talk some more with you!

    • kareena said,

      Were r u from in India? U can join MRKH india facebook group.

    • Sony said,

      hi sunitha.. i am in the same condition like yours..moreover.. i am not getting any support from my home…i am living with my mrkh only…where are you from can we be friend….please….

  13. julie said,

    I just found this site and I am so, so, so relieved and happy to find a more personal perspective. It’s been frustrating trying to find anything on MRKH that’s updated regularly and that isn’t sheer medical terminology. I was sort of diagnosed about 5 or 6 years ago, but never did any medical follow-up for a number of reasons (fear, the lab lost a bunch of y bloodwork and I was too nervous to go back, etc. etc.). So now I’m 23 trying to figure out where to even BEGIN dealing with MRKH and all the interrelated challenges it has created for me (a chronic fear of relationships, for one, haha). Luckily I live in TO and should have some good resources at my disposal if I ever get the nerve up to go and deal with it.

    I will definitely be following your posts and would love to share more of my story… at some point.

    • MRKHCanada said,

      Glad that you have benefitted from my blog, Julie! Please feel free to share your story and/or make comments!

  14. Thomas Lundmark said,

    Thought you might like to know that Eva Braun suffered from MRKH, as I am sure a lot of prominent women have and do. More on the subject of Eva Braun can be found in my new biography ‘The Untold Story of Eva Braun’.

  15. Betsy Hall said,

    This is a GREAT resource!!! What a wonderful site! I just created an MRKH support and awareness page on facebook and I was wondering if I could add this blog as one of the links to reference on my page? This really is an awesome site! Thank you for creating this page so that others can find support when they need it most! ❤

    • MRKHCanada said,

      THANK YOU!!! Absolutely – share are much as you want!!! That’s what this site is here for!!! Thanks for creating the MRKH group on facebook! ❤

  16. Rachel said,

    I was diagnosed with MRKH last year. I was 17 and hadn’t had my period yet and the doctor came in and asked me to have testing. 6 months of Ultrasounds, blood work, and an MRI later she told me I didn’t have a uterus. Which really, at 17, didn’t bother me. But women with MRKH don’t really have a vagina either. “Vaginal dimple,” they say, “2-7 centimetres”. Which is really not something a girl who has a boyfriend and wants to go to university wants to hear. So I went to Toronto to visit a MRKH specialist, Dr. Blake at Sunnybrook in Toronto. Dr. Blake used to work at Sick Kids and has seen actual cases of MRKH before. My main concern was, as I mentioned, the whole lack of vagina thing. Really there are only three options open (that I’ve found) for women with this problem; surgery, dilating, or just leave it be and never really have sex. Now Dr. Blake, with all her experience, recommended the dilating.
    The plan is for me to start this next week and I am honestly…afraid. I’m 18 years old and it … HURTS when I try to put my finger in my vagina. It’s all very discouraging.
    Do you have any advice?

    • MRKHCanada said,

      My advice is go slow. When I was first diagnosed all I wanted to feel was what it was like to be normal so I did everything I could to push myself. Maybe a bit too hard sometimes. I tried to deal with the physical before the emotional – just because I think that was easier for me. I thought maybe if I can reach 10 cm I’ll feel normal. I’d say it helped but it definitely wasn’t the complete answer. Ask yourself: are you ready to have sex? If the answer is yes, try dilating. Go at your own pace and push only as hard as you feel comfortable doing! Use lots of lubrication and try and find a spot that relaxes you and provides privacy – this will help you in the long run. Hope this helps!

  17. Rachel said,

    I was diagnosed with MRKH last year. I was 17 and hadn’t had my period yet and the doctor came in and asked me to have testing. 6 months of Ultrasounds, blood work, and an MRI later she told me I didn’t have a uterus. Which really, at 17, didn’t bother me. But women with MRKH don’t really have a vagina either. “Vaginal dimple,” they say, “2-7 centimetres”. Which is really not something a girl who has a boyfriend and wants to go to university wants to hear. So I went to Toronto to visit a MRKH specialist, Dr. Blake at Sunnybrook in Toronto. Dr. Blake used to work at Sick Kids and has seen actual cases of MRKH before. My main concern was, as I mentioned, the whole lack of vagina thing. Really there are only three options open (that I’ve found) for women with this problem; surgery, dilating, or just leave it be and never really have sex. Now Dr. Blake, with all her experience, recommended the dilating.
    The plan is for me to start this next week and I am honestly…afraid. I’m 18 years old and it … HURTS when I try to put my finger in my vagina. It’s all very discouraging.
    Do you have any advice?

    • Penny said,

      I was a patient of Dr. Blake’s when she was at Sick Kids. I was diagnosed when I was 14 and am now 38. Dilation works. I actually waited until I found someone I was interested in, really because of a lack of motivation. I was lucky to have met my husband when I was 16 going on 17 and so when I actually made the decision to start (note the doctors were happy when I finally started), it really only took 6 months. I must admit, I found it extremely painful (many nights in tears), but once the doctor’s pointed out I was not dilating properly, it really did not hurt at all. Dilation was new and I really wanted surgery, but Dr. Blake pushed dilation and I am extremely happy she did.

  18. Maddy said,

    I find it comforting that there are people just like me out there asking questions and getting answers! No matter what age you are diagnosed the emotions that follow hit you like a ton of bricks. Nothing your doctor says is comforting, no amount of attention or love your family/friends give you takes away the pain that you now have to carry around with you for the rest of your life. Reading various blogs and web sites brings a positive light to this negative situation for me. Our stories are all so similar and i can only imagine the same thoughts run through our brains. That feeling i will never feel to get a kick or a hiccup. I will never be asked “how far along are you”? I will never understand why being in labor is such a beautiful thing. I will never take a home pregnancy test and tell my husband that I’M pregnant. My doctor says i should look at the bright side, you’ll never have to deal with a period or birth control. I agreed, but what was really going through my mind was “lady, you have no idea what it feels like have your biggest gift in life taken aways from you”. I would rather deal with that and then some to be able to have the option knowing what its like to be pregnant. Ive been through depression, anger, bitterness and hurt since being diagnosed. Had i not gone through those steps on my journey and just looked at the positive side, i wouldn’t have realized that i had a greater purpose. Whether it is to be a mother someday or be a strong, independent, confident woman I am now, I have a purpose and I am loved for who i am. Together as one we have proven to the world that just because we are different doesn’t mean theres something wrong with us. Make the best of your situation because you are incredible and unique for dealing with the mess of MRKH. Our diagnosis does not define us, we define it. Thank you for having a space to share!

    • Isabella said,

      Maddy I so loved your piece. I was diagnosed at 18. I am now 62. I had a vaginal surgical construction which allowed me to have a ‘normal’ sex life. The loss of all your babies never leaves you nor does the ‘pang’ when you hear of another pregnancy in the family that everyone is happy about. However, dealing with this heartbreaking, alienating condition makes you strong. You will find that there is nothing in life that will break you now because the worst thing that can happen to a young girl/woman has already happened and you have dealt with it. It will make you an independent, caring, understanding woman. Be brave your life is out there and you can fulfil your promise.

      • Maddy said,

        I wrote that quite some time ago and just saw your response Isabella! I’m looking into adoption and surrogacy now. My life has been so wonderful and I’m honestly thankful for the cards I’ve been dealt because I wouldn’t be who I am without them. Love your story and I think our hearts are very similar. You’re another “super woman”!

      • MRKHCanada said,

        Love your positivity Maddy!

  19. lifemrkh said,

  20. Penny said,

    I have a child via gestational surrogacy born in 2006…. Reach out if you have questions concerns or navigating. I was diagnosed when I was 14 and now 38… I am happy to share the experience and challenges both legally and mentally.

    I used to attend Sick Kids and we had a group that met once a month… Only reason I got through my teen years but the doctors were great!

    • Rita said,

      I’m thinking of surrogacy. What’s the process?

  21. Sony said,

    hi…. I am from Delhi India suffering from MRKH. is there anyone with the same condition in Delhi or nearby with the same suffering. please contact me at sauravsony5u@gmail.com

  22. Sony said,

    hi…. I am from Delhi India suffering from MRKH. is there anyone with the same condition in Delhi or nearby with the same suffering. please contact me

  23. Johanne Piché said,

    Hi,
    I am a mom whose daughter was diagnosed with mrkh 6 years ago when my daughter was16 years old by Dr. Fleming from CHEO..
    Trying to read and understand the specifics in mrkh..

    It’s difficult for a parent to understand fully what it feels for daughters experiencing these difficulties with their bodies..

    Some family doctors are not aware of MRKH…
    i would greatly appreciate a reference for a specialiat with Ottawa…
    Does Dr.Fleming have a private practice beside Cheo?

    Thx for any help or suggestions that you may provide,

    Johanne

  24. cj said,

    I too have a child via gestational surrogacy, happy, healthy and bright as a whip! I am available to chat if anyone has questions. I feel as though I am on the other side of this now, as I was diagnosed at 15.
    Happy to share my experience for those navigating this syndrome.
    I wish there was online support when I was a teen 🙂

    • martha komuhangi said,

      hello CJ,
      glad to know you have child via gestational surrogacy. i too thinking of having my own child through surrogacy, once i have my child the battle wih MKRH will be over and i will have won

  25. Samantha said,

    I descovered when I was 16 that I was diagnosed with MRKH. Saddest day of my life. Nothing I want more then children of my own and pray everyday I’m able to one day soon carry a child of my own. I did not need no outside work done. Everything is in place where it needs to be. Inside I’m not to sure. Doctors say they couldn’t see any physical evidence with the ultrasound that there was any ovaries or uterus. Personally I think that’s bull, I get all the symptoms of a monthly, yes there not always regular but for the most part they are. Not taking anything for it right now and haven’t had anything done for tests since I was 16. I’m now 24 and about to get married and would love some info on specialists that o could possibly see. I live in Alberta but more then willing to travel for the right specialist. Please anyone help me out with that info would be great 😀

  26. martha komuhangi said,

    Hullo all,
    its indeed a great relief to know that someone out there has lived through MKRH and their life is moving forward.I am Martha from Uganda,
    i was diagnosed at 22 and the doctor didn’t even know what the condition was called i had only gone to check why i had never had periods , did a scan and he gave me results saying, “No uterus, no ovaries, i am not God” since that time i sought help from different doctors but in vain till i got one that did an operation but the vagina created was passing stool i went back n it was instead closed and have lived with a scar till recently i meant someone from the UK who i managed to request to get me dilators from there as here in Uganda i had failed to find. i used the dilators for close to six months and there’s great improvement.
    for those of you that have had surgeries, Does the vagina created connect to the rest of the reproductive system? mine seems blocked, during intercourse its embarrassingly so dry yet i feel inside me there’s fluid but no where to pass.

    in uganda iam sure there are several girls going through the same if only us who have faced this can unite and help those that have not learnt to live and cope with MKRH. those girls looking for answers,support etc
    even the doctors here need to be educated about this answers like .”no uterus no ovaries” are devastating. i could go on and on but all in all thank you for this page and for fighting this. stay strong

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