Sydney said: June 10th, 2014 8:55 am
I am 16 years of age and was diagnosed with MRKH recently. I don't feel like myself anymore, I feel empty. I want to go to therapy for it but I don't feel like anyone would ever be able to understand how hard it is to have your future plans erased. I've been sticking pillows in my stomach since I was four years old. This is so hard on me right now and I really need someone to enlighten me.
germangirl said: July 1st, 2014 5:02 am
I really admire your courage and your strenght to fight for more awareness all over the world. i was diagnosed when I was 17, almost 18. I've always feared to go to the gynecologist becaue I somehow always knew there was sth wrong with me. However, it is the same in Germany here I can tell. Nobody knows anything about this disorder. My gynecologist is a very nice man and he had had a patient once who suffered from it too! That was a huge advantage for me. I didn't have to go and see specialists all the time who know nothing like all the other doctors. I went through surgery last year and it was very hard. But the hardest thing is that surrogacy isn't allowed in Germany. I'd love to change that sothat it would be possible for me and all the other women to be a mother one day. Keep on fighting. You are never alone. Greetings from Germany to all you American girls (and to all the other MRKH warriors).
J said: July 2nd, 2014 1:47 pm
I'm a 24-year old woman with MRKH. I am originally from Southeast Asia but currently living in the States as a student. I was diagnosed with MRKH when I was 16. Doctor who diagnosed me was horrible and never really told me what I had. I had to rely on Google search to figure more about my problem. i became interested in using dilation but my doctor was forcing me into the operation, saying that it was the only option. Fortunately, I came to the States and found the hospital that had a wonderful staff that knew well about the symptom. However, it was way too expensive to get the treatment there as my student insurance did not cover the expenses.Later, when I was visiting my home country again I finally found a doctor who was supportive of using dilators. But I had to leave the country soon and was not able to see the doctor again to check up on dilation progress. In the meanwhile, I was suffering from chronic depression that killed motivation of living life. I had a such a weak will to continue dilation and stopped after few attempts. I was seeing a number of guys in between and it always ended with frustration from both parties over my inability to have sexual intercourse. But It was too hard for me to live with depression that greatly affected my grades, careers and my well-being. The fact that I do not have a normal length vagina, uterus and ability to conceive was already depressing. I just hit it up with a guy few weeks ago and now I don't want him to go away again because of my problem. I am sick of it. This time I want to do something about it. I want to regain my confidence and simply get over this problem that has been bugging me forever. I'll be more brave and try to encounter the problem to solve it, rather than running away from it. It's painful to see through it, but eventually that will make me feel better in the future. So I want to gain community support from this website to help me accept the problem without hating myself.
Kylie said: July 22nd, 2014 12:05 pm
Thank you everyone for sharing your stories. My name is Kylie and I'm a 35 year old from Australia. I don't have MRKH. But during my 20 week scan, it was found that there were problems with my baby girl. She is now 4 and have MRKH. I still don't know the extent, and would love information from other people who were diagnosed as babies. Thanks
Karen said: October 7th, 2014 7:36 am
40 years old. Wanted to be a mom since age 3. Unable to have vaginal sex until almost age 20 and thought I was just a freak. Diagnosed with absence of uterus at age 16 1/2. Tonight for the first time in all of these years, I know there is a name for it, and a global community of other women who share it, and that I really do have two X chromosomes. It is 10:30PM here right now and after just trying not to cry and cry, I want to whoop and shout and do cartwheels down the street. This means everything to me.
Karen said: October 9th, 2014 9:31 am
I apologize for my stunted grammar and wording in my initial guestbook signing but I am 40 and though I was diagnosed by laparoscopy with an absent uterus back in 1991 and long suffered problems with adhesions and great difficulty with intimacy, I never ever knew it had a name or that there were other women with the same diagnosis. I just thought I was strange and have secretly felt like only half-woman for the past 24 to 25 years. I was in shock and happy tears the other night when I found these answers and this community. I am so thankful this foundation was formed. Even though finding this site does not change my circumstances, I feel like a whole, real woman for the first time in decades just knowing I am not alone anymore.
Magdalene Kenyan Girl said: October 16th, 2014 4:06 pm
I am 30 year old from Kenya,Africa.Am so glad that i found this group ,thanks to MRKH foundation.For many many years i thought i was the only one who is not 'normal' different from the other women in the world so i always felt isolated especially the fact that i am from Africa and the issue of Infertility in women its not just accepted in the society and you are seen as an outcast.Thanks sisters.
Anna said: October 20th, 2014 6:04 am
I'm 26 & I know of about 4 women that have come out about having MRKH in the UK. I would love to meet someone who has this. Diagnosed at 17, because I was curious as to why I didn't have periods. My consultant was incredible. It hit my Mum more than it did me, I hadn't really thought of having kids as such, but I thought I had the option nonetheless. I've also been diagnosed with PKD & MSK (medullary sponge kidney) in the last 2 years. MSK, like MRKH, are both birth defects but MSK isn't usually found until early 30's. I've had 8 kidney stones lodged in my tubes, 3 stents out in & taken out, 6 operations & 13 cannulas in the last 2 years.. and my Doctor is completely sure this doesn't link with MRKH at all. I have cysts on my ovaries & tons of them in both kidneys, which they tell me aren't to be worried about. I STILL get the "but you're so young to be going through all of this" from medical staff. It's amazing how much the mind can deal with heartache & pain. You are all so incredible. Stay strong, we all have dark days.
Maddi said: December 19th, 2014 12:35 am
I am 15 and I have MRKH. I was diagnosed when i was in second grade. I went in for bedwetting. Of course as a second grader I did not know what MRKH or a uterus or kidney or ovary was. All I knew was a kidney was important. I remember coming home and my brother slammed the door and it hit my back and I was freaking out because I thought that it was going to ruin my kidney and I would die. Obviously I was slightly overdramatic about everything. Then it came to 5th grade and we had to watch "The Movie". Oh no we have to hear about periods! The teachers told us to go home and talk to our parents about periods and everything. That's when my mom told me I would never have a period and therefore, I wouldn't have kids. I was emotional but I held it in until I got to my room because I have always loved kids and now I won't be able to have my own. But I knew I had to learn to accept it, so I did. I knew God created me like this for a reason. Now as a sophomore in high school, I feel like all I hear is I hate having a period and everyone complaining. Sometimes I just want to turn around and say be greatful because you could be like people who can't have a period and therefore kids or sex. Even people who know I have MRKH still tell me I'm lucky and I do look at them and say I'd rather have a period once a month then never be able to have kids. But I'm getting through it and the help of an amazing support system makes it all ten times easier..
Dakota said: December 19th, 2014 1:46 am
I am 16 years old, a year ago i was diagnosed with MRKH. Thinking i was the only person with it scared me. I am happily under going appointments to further my knowledge on my syndrome. I am so thankful i am not the only person who has been through this. I want to say thank you to all the ladies who have had the heart to help other young women as myself. Hopefully I'll make it through this .
Shawnasia Johnson said: January 5th, 2015 3:05 pm
I'm so glad I found this group! I now know, I'm not the only one. My name is shawnasia Johnson and I am 23 years old from the Bronx New York, and I found out I was diagnoised with MRKH at 16 years old. Having infertility issues you feel like an outcast ;but I believe in GOD and there is a reason for everything.
Vapuna Gayatri said: January 26th, 2015 3:10 pm
Hi All Beautiful ladies I am Vapuna Gayatri f (I gave this name to myself to come out of closet of MRKH and talk openly from my heart) from india. I request the founders to allow me to communicate and share with this name only till I get the courage to come up and meet you all with my real name and identity..
Jill glasgow73 said: February 6th, 2015 3:04 am
I didn't understand why it happened to me. I was 15 too. Invasive examinations and operations followed. I've never really quite gotten over it if I'm honest. But finding out what was wrong with me and realising it wasn't just me anymore, wow that was massive. Absolutely massive. I read all the info and it was me, it was me! i found it via a Facebook article on a succesful artificial womb story can you believe it? I wish they'd been doing them back in the 90's. So I guess it's taken time to accept but i will always be that teeny tiny ever so slightly pissed off about it and why shouldn't I be? Take care sisters xx
Dawn Ann said: February 21st, 2015 12:11 am
I am 44 years old. I was diagnosed with an absence of uterus when I was 17. I had put this diagnosis in a deep dark corner of my mind. It has sat inside of me all of these years, festering. It has been infecting my life with fear. It has robbed me of my self esteem and self worth. Finding this website was a gift from God. I asked my higher power to give me the strength, motivation and follow through to reach out and get the help and support that I so desperately need. Writing in this guest book is my first brave step. I already feel the heaviness of the fear lifting. I am tired of the negative impact this has had on my life. I am ready for it to work in a positive way. I am observing and taking it all in now, praying that one day I can be a beacon of hope for someone else who feels just like me. I haven't met any of you yet, but I already love you my MRKH sisters! Thank you for giving me strength and hope! xoxo
Leslie S said: February 23rd, 2015 2:33 pm
Hey all! OMG am I glad to see you all. My name is Leslie I was diagnosed in 1975. Things were very different back then very different from today's diagnose. It was all experimental back then nobody really knew what to do, and counselors were unheard of. I was told I was helping doctors understand my condition and help other patients who may be born with it someday, but it was so rare I would probably never meet another person with the same diagnosis. They were wrong because Ive found this website with hundreds of women just like me. Back then it was called Mullarian Agenesis and the new name is called MRKH. For 39 years I've been utterly alone in my secret world telling all that are interested but no one really knows how it truely feels. I long to find another person who experienced the early scientific experiements of the mid seventies like I did. I want to know if others out there survived. If you are out there I want you to know that I'm ok, and you are too. We made a difference and paved the way for the younger generations not to go through what we experienced. I'm so happy as I read these wonderful stories of courage and wisdom. My condition never stopped me. I adopted a beautiful child who is now 22 years old. Unfortunately he was diagnosed with autism at age 2 and childhood schitzophrenia at age 9. He requires 24 hour care, but I am strong and have found a way to help him reach independence in his own home. They say that what doesn't kill you makes you stronger and girls... I am a warrior!! I can't wait for the chance to meet all of you on the facebook blog soon! Leslie
ondreya said: February 27th, 2015 1:25 am
Im going on 26 years old I was informed at the age of 14 that I have no uterus or cervix, broke my heart. I never had a period in my life. It hurts me so much to even think or speak on the subject, I love kids and want my own. I have severe random pains. I also tend to experience swelling or discomfort during and/or after sexual intercourse. As a child I stayed in and out of the hospital for test. And for years they had no answer. Im am currently still seeing the 1 doctor who understood and has knowledge on this that my mom found. He is an awesome guy but he says hes leaving soon. I fear all the time of whats next. I knew I wasn't alone but I still have that hole. happy to know im not alone
Catherine said: February 27th, 2015 5:56 am
I am 43 and through Jaclyn from Survivor, discovered that what I had been diagnosed with when I was 17 is MRKH! My heart goes out to all those young women who are struggling with this diagnosis. For me, I have never let it define me. It is something I have, but I have learned that everyone I ever met in life is fighting their own hard battle. Ours is just something most people can't "see". I have signed up to meet my "sisters" at the Children's hospital conference in Boston and I can't wait to meet you all! Living with MRKH for 25 years and then discovering this community brings me overwhelming joy. I am happily married to my dream guy for 17 years and we have a wonderful life. I don't have children and that has been my choice but that has allowed me so many other wonderful opportunities in life I would have never gotten if I had been a mother. You are all in my thoughts and prayers and remember we are warriors and we are not alone!
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Rain said: May 21st, 2014 11:58 pm
I was diagnose with MRKH when I was 15 after going into the ER because of sever pain in my left hip during a basketball game. The hospital did a CT scan and there was no visual of my left kidney. they also did an ultrasound and had no sight of uterus or ovaries. They figured out I also have a slight condition of scoliosis. They referred me to OB/GYN where there was a visual of both ovaries and uterus. One of my ovaries was smaller than the other. My uterus is small as well about the size of a gumball. I have never had my period before. they checked out my vagina and it was about 1/3 the length of a regular vagina. The pain was caused by a ovarian cyst. I am now 17 years old and just graduated high school. I hurts me to know I cant have kids still to this day I cry about it. I still don't get full on why I cant have children if I have all the parts the only thing wrong is that my vagina isn't connected to my uterus. After finding out I had MRKH it seemed like everyone was/is having babies all the sudden and it hurts to see that I cant experience that. But god has a different plan for me I guess. I have AMAZING doctors to help me cope with my abnormalities and couldn't be more blessed with what they have done for me and will continue to do!
Maura said: May 26th, 2014 8:10 am
beautiful your MRKH foundation
germanwoman said: August 22nd, 2014 6:52 pm
I was diagnosed when I was 14. Now I am 23. I am very said about the fact, that surrogacy isn't allowed in Germany. It is not easy, but we are not alone! Thank you!
anonymous said: August 22nd, 2014 9:40 pm
really struggling with this right now, found out a few years ago that i had it but at the time never wanted children anyway. Now i'm in my early 30's and all my friends and other family members have had kids and i get so angry and so jealous that i can't! My life has been full of health problem after health problem, just for once it would nice to feel normal!
Cat said: September 22nd, 2014 3:22 am
I was diagnosed last year (Uterine Hypoplasia) along with other things.. the whole process has been exhausting and stressful (Luckily I am in Houston; there's only 2 doctors in the USA specialized with MRKH, and one is where I live. I am 17 now and am slowly coming to terms with it, no therapy or anything (: I remember when I was 13 I tried putting in a tampon 'for practice' before my period, which was expectant to come soon (Now it's never gonna come, lol.) And I couldn't fit it in. Now I am so glad I found out o.o
Rosie mrkh said: September 23rd, 2014 8:21 am
ive never been diagnosed that proper way. All I know is at 13 I was told that I was missing almost all female organs and everything else where female organs should be is to small. I'm now twenty eight and it seems line all women around me are having kids and when I'm asked when am I going g to have kids my hand automatically goes to my belly and I have to say I can't and then I lie when they ask why. I'm sad and my current doctor scouts around the subject. Don't have a gynaecologist so I can't ask there. 😡 😢
Karen L Best-Jarrett said: September 26th, 2014 8:24 am
Thank God I found you! I am 64 and my daughter is 41. She was diagnosed at age 14 in 1987. Lise Gimre referred me. I had no idea that there was such an organization in the US.. I don"t know what to do next....because I have not recovered from the shock of having found this group. I am just at this moment so happy that I did.
Maria Cordoves said: October 2nd, 2014 10:48 pm
My sister who is 14 was recently diagnosed, and now that I have read so many personal stories as well as all the support groups, I am hopeful that she will live a normal life and I plan to hopefully be a surrogate one day for her own children. Thank you for all the amazing work!
sandra ealey said: December 15th, 2014 3:24 am
28 and just found out what I have. Thank you all for this great page and all your hard work looking out for young mrkh patients.
Elaine Moses said: December 18th, 2014 9:05 am
I am 34 and have known about my condition since I was 15. Tonight watching TV I found out it has a name and that I am not alone. I can't believe that it has a name and now I can explain why I can't have children simply. I want every one who is so sad about their own story to remember .....we all have a purpose and lessons to learn. If we love ourselves it makes our purpose easier to see and our lessons easier to deal with.
Jessica Vasquez said: December 22nd, 2014 9:05 am
I am 33 and I was diagnosed so to speak when I was 15. My mom was concerned because I still had not started my period. The doctors did an ultrasound and we're very confused at what they seen. The doctor I was seeing had never seen it before and they struggled to explain it to me and my mom. I was crushed because all I heard was you will never have kids.They had to call in another doctor but he to did not know much. I tried to research it myself but there was not much out there. Luckily I am a huge Survivor fan and seen Jacklyn which led me here. I am glad I found somewhere that people know how I feel and can understand the struggles I face. I hope that I can learn more because the health problems I have fave I always wonder if they are somehow connected. I want to become the fighter I know I can be.
Venecia Proctor said: December 24th, 2014 10:32 am
I'm 19 years old and I found out that I had MRKH when I was 16 years old, my junior year of high school. After the initial shock and depression the only way I knew how to cop with it was to pretend like it didn't exist. I went from my doctor being so proud of the progress I was making with the treatment to months later, him shaking his head at how I was receding. He didn't understand. My parents didn't understand or feel comfortable talking about it. So generally I felt alone, until today when I saw a post about 2013 Miss Michigan. As I read the article on her on Wanderlust it was as if she was speaking directly to me. I had felt so alone for so long that I had to keep checking that we had the same diagnosis. I cried, a lot, and then realized that I need to make a change and stop acting like this diagnosis doesn't exist but find a way to incorporate it in my life and move past it. Thank you so much for pages like this and a community that makes people feel less alone.
Lizzy Austerberry said: January 30th, 2015 9:51 pm
Hello everyone! My name is Lizzy and I was diagnosed with MRKH when I was 15 (I'm 21 now). I am from Saginaw, MI but recently moved to Venice, FL. It's so nice of the Beautiful You Foundation to set up a support group. Even though it wasn't around when I was diagnosed and I am not in major need of support at the moment it's nice to know that this group is there for other girls who get diagnosed since i'ts a sad and confusing time. Keep doing what you're doing. You're awesome!