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Debbie said: May 15th, 2013 3:18 am
I found out in 1977 I was born without a uterus. Needless to say, I am in my 50's and have lived with this all my life. I think the hardest part about this is the constant questions of why I didn't have kids, or do I regret never having kids. I don't openly talk about it, won't tell people why other than saying it just wasn't in the cards for me. It's good to see that there is more awareness about this for teenage girls than there was for me, which was None!!
Carrie said: May 15th, 2013 7:13 am
I was diagnosed at the age of 15. I had to have extensive vaginal surgery that was painful and embarrassing. I wish I had you years ago! I am now 37 and have had a varying degree of reactions from medical workers, boyfriends and family.
Katharine said: May 15th, 2013 7:22 pm
I was diagnosed at age 16... I am now 41 and have been living with MRKH all this time.... I wish I would have had this support when I found out... I am so glad that it is becoming "public knowledge"... now maybe my family and friends will finaly understand what I have been going through all these years.
Dan Lee said: May 15th, 2013 11:43 pm
I am a husband of wife with MRKH. I just heard about Miss Michigan and find this website. What a great society encouraging people with MRKM. However, in this space, I would like to encourage MEN and WOMEN at the same time.(I'm not a native speaker, so my expression for sexual issue can be a bit weird.) I remember the first day when my girlfriend (now wife) talked about her condition and cried very much. I had no idea what it is because doctor simply said she doesn't have it. However, that didn't bother me so much because I love her not her potential for babies. I must admit that it was shock but not as much as I gave up our relationship. However, we had one difficulty. My wife had to insert different sizes (from small to normal) of plastics looking like penis. Basically, this treatment made us having sex possible. It seemed to hurt her a little at the beginning but it took only about one or two months. I am just glad that she has normal hormone level because I heard that symptom can be very different depending on 'how much' they develop. Sorry, I have to make it short because of space, but I will love to answer any question related to men's concern.
Jodi said: May 25th, 2013 8:26 am
I am so thankfull for the stories on this web site. It has helped me to face my situation and allow myself to process what this means for me. I also feel supported and educated and again I thank each person for sharing their story and the brave young woman who started this foundation.
Candice said: January 16th, 2014 6:31 am
Hi I was diagnosed with MRKH at 14yrs old and Im now 34, and still to this day not many people know including my fam and friends know about this! I have all the emotions that most of us women/girls have and its not easy to deal with,and the questions about periods and babies are hard to dodge that are asked by others. I think its time to come out with it though because along with MRKH comes other problems physically,not only emotionally, I recently was diagnosed with heart problems that comes along with MRKH and also spinal deformities which i also have, so now its time that im open with my " situation" so i can be treated correctly because I dont tell all my Dr's my diagnosis because i dont want to tell everyone and get all the questions or the pity look..So I guess im here to just let people know please take care of your heart and your bones and listen to your symptoms because it all comes together.
Jane said: May 29th, 2013 5:36 am
Hello:) I'm 44 and was diagnosed with MRKH at the age of 15. At the time, I could appreciate that there were others who shared this reality but there was no-absolutely no-awareness about it within the larger medical community much less among my peers and no established network of young/other women like me. As recently as about 10 years ago a GYN I was seeing for the first time was completely clueless about my condition. As I tried to explain it, his assistant just stared at me with her mouth agape. I felt like, with my examination, I was giving them both admission to freak show. Although my present GYN was familiar with the condition, even she had a reaction akin to seeing a rare, exotic animal-one, statistically, which would likely never cross her path again. So, progress is being made but there is still work to be done. And I applaud the organizers of this site for advancing this effort. It is wonderful, valuable and extremely worthwhile what you are doing. Although I likely may have decided to continue in my habit of being extremely private about this for the rest of my life, your efforts have inspired me to reach out myself-if only to offer this thanks. I picture 15 year old girls of today finding out about their own diagnosis and-although this kind of group can't change the reality of them having the diagnosis-it can do sooooo much to validate who they are, to give them support, a sense of place and community. Recalling how I felt at that age-as if I were somehow "less than", so alone and deeply, deeply sad, what you are providing through this community is simply invaluable. From the bottom of my heart, thank you.
Beth said: June 5th, 2013 7:53 am
I was diagnosed with MRKH at 17. I have never met anyone with my condition, nor met any lay person who has heard of it. I have always been resilient and have not struggled through the process of navigating my condition, but my heart goes out to girls and women who struggle. It is amazing to see other faces of people who have this condition, and I would love to share my story on your website if that is possible.
Fiona Griffiths said: July 2nd, 2013 9:26 pm
I am 47 and found out I had MRKH when I was 18. I was rushed into hospital with a burst appendix. I was born with a deformed ear, one kidney and a twisted spine but MRKH was never diagnosed. I read the daily mirror today about Tabitha and realized there was a name to it. My family don't really understand or maybe they find it too difficult to talk about. I'll never come to terms with the fact I can't have children but I have not let it take over my life.
Jen Irwin said: July 11th, 2013 3:10 am
I have MRKH I am not uncomfortable with it at all, but I have noticed that some of my friends and family are a little uncomfortable talking about it. I dont really understand why. The way I dealt with it was to start blogging in hopes that people would understand that its not something that we should be ashamed of...I try to bring a sense of humor to my blog, but still talk about every day issues that we face. It shouldn't be uncomfortable to talk about. Its what makes us who we are! www.humoringmylife.blogspot.com
Casey said: August 22nd, 2013 10:23 pm
Ever since I found out about this organization, I felt better, knowing that I was not alone. I'm almost 21 and I found out at 16. I was heart broken, ever since I was little I dreamt of being a mother, carrying her baby for 9 months, and in an instant that was taken from me. I still sink into my depression about it from time to time, but my MRKH sisters keep me level headed, as does my fiancee. Thank you everyone and the ones who created this wonderful group. I love you all.
Christina Lemmo said: September 7th, 2013 7:33 am
I found out about my MRKH probably at a slightly age than most young teenage girls. n my case there is also the correlation of having a cleft lip and palate, I initially began to understand this as a "midline" deformity. Anything that forms in two parts like the lip or palate, brain etc. have a higher chance of being affected. It takes my cleft lip and palate into a higher level of being a cleft related syndrome, Cleft lip and palate can occur in 1 out of every 600 - 700 births. I had my partial hysterectomy at age 17. It was a geneticist that I met at a cleft lip/palate conference who connected all the dots" for me. Somehow for me looking at all the separate medical problems and diagnoses that I have as part of a larger picture made it easier to accept.
NR said: October 18th, 2013 6:57 am
I was diagnosed when i was 21 although deep down i've always knew something was wrong. I am 28 now but still having issues dealing with it. My family chose not to talk about it and i rather do the same as sometime i feel so ashamed. Im married to a wonderful husband who understands and support me which im very thankful for. We are considering adopting now and hopefully everything will be happy and well. Thank you for this site and knowing Im not alone. Would be nice if I were to be able to meet and see everyone of you in person. God Bless!
Rachel Taylor said: October 24th, 2013 5:47 am
I have been diagnosed with MRKH at the age of 16 and I am really struggling with it and I just really need some support so yea
Nondumiso said: October 29th, 2013 3:11 am
I was diagnosed with MRKH when I was 18 , I am now 21 and still struggling with acceptance. I feel ashamed and can not talk about it but after reading a few stories I realised that there's got to be more to life and that I need to start embracing who I am . Thank you.
Mousa said: November 15th, 2013 2:50 am
Just read an article on the Daily Mail website about a girl with MRKH. First time I heard about this condition. You have my support.
Dawn Moles said: December 3rd, 2013 3:12 am
My Longest and dearest friends daughter ( who is like my daughter) has this condition as well. I am very proud of her for sharing her story and being so brave. I love you Kristen
stuti said: December 3rd, 2013 12:44 pm
Hi, my daughter has the same problem.She didn't experience menstruation. Do all who have this problem face any problem in ovaries later?
stuti said: December 3rd, 2013 12:45 pm
Hi, my daughter has the same problem.She didn't experience menstruation. Do all who have this problem face any problem in ovaries later?
Amber Feltner said: December 12th, 2013 3:55 am
When I was 16 I learned that I was born without a uterus. I never knew what the condition was called until now. I am 23 now and here recently I decided to visit the gynecologist for the first time since I was 16. I wanted to learn more about my condition and just to check out everything because I was curious about what I have and don't have or what my hormone levels where. On that note, I don't think I have ever been more humiliated in my life and I felt so violated. They treated my like I was a science project and made me feel less of a woman for not having a uterus. So after my appointment I had my first panic attack and I have been struggling with it this week.. but I am going to school to be a nurse and I have a great job, I've never let MRKH get me down before so I can't start now,
Deedra said: December 18th, 2013 12:54 am
I don't feel like a "warrior" today. And to be honest I don't feel like a "warrior" any other day either. I waited 3 long years (at age 22) to get my diagnoses, and only after sending off for my medical records. Most days I feel like I need to be strong for my family, while inside I'm completely lost and broken.
Jolene Byrne said: January 14th, 2014 1:44 am
I was diagnosed at 16 and now am 39. It has been a mental and physical battle all these years. The physical battle is less but the mental battle still continues all these years later. Not having children has just been a broken heart all these years.
Amber Grant said: January 14th, 2014 7:33 am
Thank you so much for having this website. I was diagnosed with MRKH 16 years ago, and I have felt everything that many of the women on here have written about. I don't know why I didn't look this up sooner than today. I am currently going through some fertility treatments, so that my husband and I can have a gestational carrier. Thank you for having this dialogue open for young women, because I know the ups and downs of MRKH. This is an incredible support group, that I wasn't able to have.
Amber Grant said: January 14th, 2014 7:34 am
Thank you so much for having this website. I was diagnosed with MRKH 16 years ago, and I have felt everything that many of the women on here have written about. I don't know why I didn't look this up sooner than today. I am currently going through some fertility treatments, so that my husband and I can have a gestational carrier. Thank you for having this dialogue open for young women, because I know the ups and downs of MRKH. This is an incredible support group, that I wasn't able to have.
Sara said: January 15th, 2014 1:02 pm
I'm now 21 and have known I have MRKH for about 5 years now. When I was younger I never told my friends because they wouldn't understand. I've always felt like nobody really does, Until I found this website! As I am getting older I'm heavily struggling with the fact I can not carry a child because it is something I have always just wanted so much. I am so grateful for all of the beautiful stories! I wish I would have found this website sooner because I finally don't feel so alone (:
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