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Posted by gia00 on 2011.08.07 at 00:11
Hello everyone,

I´m 21 old girl diagnosticed with MRKH and I need your help and support. I bought the dilatation kit and started the dilatation process and I would be so grateful for all information, personal experiences, feeling and everything you think about. I cant control my moods, I´m so sad of this whole situation and want to have a normal life without the fear that someone could find out about my diagnosis.
Please write me on my email gia00@windowslive.com (gia and two zeros) ,it would mean everything for me.

thanks a lot


(Anonymous) at 2011-08-26 18:30 (UTC) (Link)


hi. i am 57 years old, and only today i saw my g.p.and for the first time in my life i had a diagnosis. even though i had to find it-by chance- myself. all my life i thought i was a freak.and as i am now finding out , so do may women like us. i thought it was my dirty little secret. but the fact is, we are all beautiful women. worthy of love, and all that it brings. we have been dealt a tough hand. but i feel stronger just knowing you are out there. if i can help you or anyone else with this problem,i would be only too glad to share my life of experience with what i now know is mrkh.
gia00 at 2011-08-31 21:37 (UTC) (Link)

Re: mrkh

Hi there !

thanks a lot for your respond. How did you handle this problem all that years? If you have some time please write me about you and life with this mrkh syndrom. It really makes me feel better to know that there are many women like us, I dont feel so lonely ,just as you wrote........like a freak. I always have my up and downs.....right know im trying the dilatation method, hope it would work for me, Im very scared. Still i feel i have this dirty little secret,cant really tell anyone about it.

thanks again
linda63 at 2011-11-24 18:26 (UTC) (Link)

Re: mrkh

I am a 48 year old woman who was born with MRKH. I know the feeling about feeling like a freak, sometimes I still do. Would love to talk to you about your experiences and share mine with you. You are not alone. I am proud of myself for dealing with all this. I don't know if you are a religious person, but I know God would of never put this on my plate,if HE thought I couldn't handle it. He has great faith in me. My email address is linda.defrias@yahoo.com. This is a personal journey. Everything we discuss stays private. Hope to hear from you. God Bless
(Anonymous) at 2011-08-31 15:00 (UTC) (Link)
I had surgery so I don't know to much about the dilation kit. But what I will tell you is I was 21 when I had surgery, I was always afraid someone would find out. I have only told two boyfriends about this the first told me it was no big deal and he was not going anywhere, things didn't work out but 10 years later we are still good friends. The second guy told me he loved me no matter what, that was over 2 years ago we are getting married in May. If you find someone who loves you and cares about you it will not matter to them. I hope this helps good luck.
gia00 at 2011-08-31 21:38 (UTC) (Link)
Hello !

thanks a lot for your respond, I still havent found someone who i could tell about this, but Its great to know that there is a change for anyone to be happy. Im trying the dilatation method its quite hard to handle, but I have to stay strong and positive no matter what. I found out about mrkh at 15, know I just have to get over the negative emotions and sadness. Its really makes me feel better that there are many women like us ,with same feeling and fears. Thanks a lot for your support.

Wish all the best
(Anonymous) at 2011-09-04 21:08 (UTC) (Link)
Hi Gia,

The most important thing is to not give up. I was diagnosed when I was 15, and the doctors wanted to perform a bowel vaginoplasty or something like that. It sounded like a bad idea to me when it was described, and I am so thankful that I decided not to have the procedure. I have read about too many things going wrong with that procedure, and we really did not have all the information we do now. Most of it is only available online. My doctor only discussed using dilators for post-op, never strictly as a method to "cure" me. I wish that they would have. Although I am married to a wonderful man, and we have a wonderful marriage, I feel like I am missing out on something equally wonderful with him. I feel, at times, like I let him down by not having the surgery. I have terrible days, and wonderful days, but it is something I think about EVERY day. I have recently begun thinking about buying the dilators and seeing if the procedure will work on me. If it does, wonderful. If not, then I will keep trying to accept that I was made this way, even if I never understand why. I am 29 years old now, and I am proof that you do not need to be "fixed" to find someone to share your life with. Don't be afraid of love. It is wonderful to have someone to support you. I was lucky enough to find one of the good ones. Good luck, and if you ever have one of your moods (as I do), don't hesitate to contact me.
I will PM you with my email address.

(Anonymous) at 2011-09-08 00:37 (UTC) (Link)


Hi gia, I'm also a 21 year old girl with mrkh even saying it makes pit of my stomach sink. I found out that I had mrkh at 19 after 5/6 years of endless hospital visits without getting any answers. I haven't spoke about my condition to anybody and had 2 write a reply to your msg , I understand how you might be feeling I have done the dilation myself. I don't know if you feel the same but I know everytime I went to do "it" I just felt like why ? I shouldn't need to be doing this I'm a absloute freak . I have good and bad days but no one seems to understand how alone I feel most of the time I just feel dirty like I'm a bad person. I try not to let it get to me as have 2 stay strong inside I'm pretty broken though. I try not to get attached to lil children as it breaks my heart but no one understands that or even knows. I hope my message has helped u in some way I know its helped me to get my feelings out xx
gia00 at 2011-09-20 18:13 (UTC) (Link)
thanks a lot for your comments ,can you please write me down your email adress so I can contact you?

gia ;)
linda63 at 2011-11-24 18:18 (UTC) (Link)


My name is Linda. I am a 48nyear old woman who has MRKH. I am recovering from yet another surgery.I would love to help you. I am pretty good with dealing with all the emotions that go along with this. I am going to email you at the address you left. This iaa very personal journey. What you say to me will remain peivate. I know what it feels like to feel alone, lost, confused and betrayed. I would like to reach out to people who were born the same way as me. I hope you respond, but if you don't, I understand. Do it when you're ready. God Bless. I hope to hear fom you.
Remember, God made you special not different.
linda63 at 2011-11-24 18:28 (UTC) (Link)


My email address is linda.defrias@yahoo.com. I hope to hear from you. Bright Blessings. Linda
kate3300 at 2012-02-10 05:07 (UTC) (Link)
Hi. I was diagnosed at the age of 23 very late in the game. I was an athlete and was told that I didn't get my period because I did not have the body fat to start. After college I went to the gynecologist and was diagnosed with MRKH. It was devastating to say the least having always dreamt of having a large family. I avoided the situation for years thinking I would not have that joy in my life. I then met someone (who I am no longer with) who made me hope that was possible. I then began the dilation process which is uncomfortable at times and frustrating at others. For me the process did not work and I have been through three surgeries now which I believe have been successful. I had the vecheitti (sp) procedure which was a little over a week in the hospital but less invasive then the others. I know that this diagnosis is difficult to face and is dealt with everyday but there is a light at the end of the tunnel,
(Anonymous) at 2013-01-14 21:25 (UTC) (Link)
HI Gia,

I am a 22 year old woman from the Netherlands diagnosed with the MRKH syndrome.I have finished the process of dilatation more a year ago. Now i am all good, not living in fear anymore. I have the most sweet boyfriend and MRKH does not make me sad anymore. Amazing to see all those girls here, supporting each other :)


Melissa Ritter at 2016-02-08 01:36 (UTC) (Link)
Hi gia, I am 26 and found out I had mrkh when I was 15. I was still seeing a pediatrician and they had never heard of it and they treated me like a specimen. It made me feel like the worlds biggest freak. I grew up with only my dad and it was a subject that we rarely talked about. II was referred to a fertility doctor who also examined me like I was a freak, bringing in different students to check out the girl with mrkh. As a teenager, I was extremely shy and finding this out made it worse. I wanted to desperately to fit in and be like all of my friends. I was terrified to tell anyone for fear of what they would say. Well, the inevitable happened and one of my "best friends" found out and told my whole class that I was born a boy and horrible horrible other things. This led me to drop out of high school my senior year and do an advanced program. I was given the dilators when I saw the fertility specialist. Whenever I tried using them, I felt dirty and awkward. I ended up waiting until I was 20 and in a serious relationship. I used the dilators successfully and had sex for the first time. When I finally decided to tell said boyfriend about my mrkh, his first response was EW you were born a boy?!?! Needless to say that relationship wasn't as serious as I thought and quickly ended. 2 years later, I told another guy and he ended up holding it over my head for the rest of our "relationship". These two experiences made me fear relationships and telling people. I have finally found a man who loves me for me, and not what I was born without. We happily talk about adoption and surrogacy. Knowing he supports me makes it so much easier. For a long time I was depressed and turned to drugs to make me feel "normal" I am not 3 years clean and sober and in a happy relationship. Every person is different, but you are special. I yell myself every day that God wouldn't give me something I couldn't handle and He made me this way for a reason. Remember that. You'll be fine :).
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