Lindsay said: May 16th, 2014 12:30 am
Hello, my name is Lindsay and I'm 22 years old. I was diagnosed a few months before I was 18 after months of doctor appointments and invasive testing. (Much like all the women on here it seems) I've never sought counseling, spoken with anyone who also has MRKH, nor had continuous medical assistance to "fix" my problem as my in-town doctor would put it. I'd like to reach out to anyone who is also going through the day to day struggles in coping with this syndrome. How they've lived through it. How they've gone through the dilation or surgery process and how they've had normal relationships.
Faith said: January 20th, 2014 4:13 am
So my story all starts on one dreadful day in 10th grade. I was 15 at the time. I had the day of appointments all day at the hospital. I went with my dad and took the school day off. I went because I didn't start my period yet(like most mrkh find out). The gynecologist looked at me "down there" and she left. And after hours and hours, of what felt like an eternity, she came back. She told me that I had no uterus. Which meant I could never have children and never have sex. I was so devastated. I couldn't believe her I was silent. I started yelling at her that she had it all wrong. I was screaming and stomping out of the hospital. My dad came running after me.He was just silent.The hour car ride felt like the longest hour of my life.He started crying(like why would this happen to you of all people?) And remember, I was so confused and I was crying too. I was up in my room for hours. I was just so confused. I just ignored it for a year and never told anyone. Then I found on FB all these mrkh groups, and starting reading the stories of all these girls. I was crying because they all felt what I had felt. I was so alone, confused for such a long time! Over time, I was inspired to tell my friends, and they have been supportive ever since! I didn't even thought I could have biological kids until I start researching this. I was so happy! I'm so glad for the awareness of MRKH now!
Chloe Saunders said: February 3rd, 2014 8:14 pm
I got diagnosed with this condition 2 and a half years ago a month after I turned 16. These past couple of years have been lonely, but I am glad that my mum found the MRKH support group, and I am glad to have met all of the other girls from all over the world, including Amy and Christina. I love all the support I, and the other girls, have received, and I love this website and everything Amy, Christina and all the other girls have done to help raise awareness for MRKH.
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.
Sanja said: February 5th, 2014 7:18 am
Reaching my teenage years, I always felt something was a bit off...and I felt different than my peers. At 15 years old, I had my first OB/GYN visit, which was probably one of the most catastrophic experiences I have ever had. For the next two years, I visited numerous doctors and specialists but nobody knew what was wrong. I was told to wait, to be patient and that my period would come. Once I did not start menstruating until the age of 17, I took the matter in my own hands and started pushing for answers. About a year later, I was diagnosed with MRKH. I was 18 years old. Today, I am a 30 year old, happily married woman (although I still feel like a 23 year old girl...and very much as if my hubby and I are "playing" life). I am doing okay, for the most part. Some days are better than others, but I must look beyond MRKH. While I am different than most women, I am beautiful in my own way. It may sound pretentious, but that is not how I mean it. While being a biological mother and experiencing the ups and downs of pregnancy is a special thing that I wonÃ¢ï¿½ï¿½t get to experience, there is more to life than that. Carrying a fetus for 9 months does not define motherhood, nor does it define a Ã¢ï¿½ï¿½good motherÃ¢ï¿½ï¿½. I can still provide unconditional love for a child who does not have a loving family, or a loving mother in their life. I feel like a true warrior. Even more so after I discovered this enormous MRKH community. Thank you for being there for us. Thank you for proving a place where we can all feel normal.
BYMRKH said: February 16th, 2014 2:14 am
We received this comment and are reposting it anonymously: After dating my first boyfriend for over a year and a half, many failed attempts at having sex, and entering my jr. year of high school (16 years old) without having a period, I knew that something wasn't right. I had recently gotten x-rays on my knees because I tore everything in one due to a soccer injury. Having been an active child my doctor always said I would eventually get my period. But in the x-ray my growth plates were closed and of course, most women stop growing two years after their period. I got an ultra sound, vaginally, and the woman operating didn't say much but rather multiple questionable 'Hmmmmmms'. I received an MRI after that and had been diagnosed with MRKH. I think my mom cried harder than I did, I just thought 'I $%&ing knew it'. After the diagnoses it ended up being the cause of my first heart breaking break up and I have my fair share of depression. I tried going to a therapist and it just made me feel worse about myself. I have a wonderful group of girlfriends who support me 100% but in the back of my mind I just think 'how would they ever understand what I’m going through' I just want to talk to someone who understands. The dilators the doctor gave me are too big and make me bleed, which also happens when ever my current boyfriends tries anything. I am almost 18 years old now and have known for a little over a year. Sometimes i don’t even feel like a woman. It is not any easier. The only thing that makes me feel better is knowing that one day i will give a child a loving home who may have not had the opportunity otherwise.
TMarie said: February 20th, 2014 9:53 pm
Holy Smokes, My mind is currently blown... I know that sounds silly, but I was diagnosed with MRKH 14 years ago, and though I have had the support of family and friends, I have felt very alone in this journey. Today I discovered this site and I am overwhelmed with emotion reading your stories. Stories that I can relate to! I am NOT alone!! I have so much that I want to share. I just don't know where to start! BYMRKH: I was in your shoes!!!! I remember the frustration and the physical & emotional pain. I remember thinking, "I can't do this." There are other medical options! I would love to tell you about my journey. I am now 27, married, and have a healthy "normal" sex life (something I was told I would not be able to have). If you would like to chat, let me know.
Cassie Ball said: February 25th, 2014 2:43 am
I like most of you found out at 17 that I have MRKH. Today is the first time I have found this website and wow. I recently just got married and have my second appointment with a Reporductive Endocrinologist to see where we are on our journey to surrogacy. I feel empty, numb, speechless. We recently got the news that we are going to be an Aunt and an Uncle. Both of my husbands' brothers found out their wives were pregnant. Im struggling with feeling less than my sister in laws. But for the first time after reading so many women like me I feel so strong.
Geeta said: February 26th, 2014 5:58 am
Hi, i found out i was diagnosed with MRKH only yesterday. I have been trying to get pregnant 7 years now and have visited many doctors and done many tests and only realise yesterday that i do not have a cervix and may not be able to get pregnant. It has been an emotional roller coaster thus far. Am glad am able to get in touch with other women with similar conditions.
Rachel - Part 1 said: March 1st, 2014 8:30 am
Hey everyone, My story started probably a lot like everyone else here. I visited my family doctor when I was 16 years old and she said it is normal for girls to have late periods and I should wait a while. The next year I went again and it was a new doctor and she sent me to a gynaecologist in downtown guelph (I am Canadian), I then, of the course of a year, had multiple blood tests and 2 ultrasounds over the course of the next year. I was 18 when she told me I had MRKH and recommended me to Dr. Jennifer Blake who (at the time) was working at Sunnybrooke in Toronto and she told me to do dilation and I saw her 3 more time over the next year and half before she said she was moving to Ottawa. Over the course of that time I was see a physiotherapist who specialized in internal physiotherapy who was overseeing the process of the dilation closer to home (South City Physiotherapy in Guelph). When Dr. Blake left my physiotherapist, Nicole Watson, recommended my to Dr. Deborah Robertson at St. Michaels hospital in Toronto. Dr. Robertson was unable to take my case and then recommended me to another doctor so I want to them and they told me "you know you should become a lesbain/ not have sex" basically I was very upset and that has been the only time I had become depressed during the whole experience thus far. Then I was referred to Dr. Sari Kives (also at St. Michaels) and she has been overseeing my dilation and check-up for the past year. She is honestly the nicest expert I've ever had and just the best. I am going to my first peer meeting hopefully sometime in the next month. Sorry this is soo long, but I just wanted the share my story.
Rachel - Part 2 said: March 1st, 2014 8:31 am
For any girls with MRKH in Canada in the Toronto are I would definitely recommend Dr. Kives and for anyone in the Ottawa are they should see Dr. Blake (hopefully she's still there). They are both extremely knowledgeable, professional, and encouraging. They also both have lots of experience with women with MRKH and they are women (so the exams aren't super awkward lol).
Holly said: March 4th, 2014 9:06 pm
Like so many of you, I was diagnosed with MRKH when I was 17 and hadn't started my period yet. I am 39 now and just came across your website this week. After dealing with all of the emotions that come along with having this condition it is amazing to read your stories and know that we are not alone on this journey! After my diagnosis, I was referred to a doctor who gave me more information about MRKH and treatment options. I married a wonderful man and we have a 'normal' healthy relationship. He also knew what it would take for us to have a family. After several years, and an emotional roller coaster, we were blessed with twins! A gestational surrogate carried for my husband and I (our children biologically, she carried the pregnancy). Not a day goes by that I don't look at them and realize how lucky I am and what a miracle they are. If anyone would like to chat, let me know. This condition can make you feel very alone at times and I think it's great that this website can help us feel more connected with those who know exactly what we're going through.
Jamie Troester said: March 8th, 2014 5:21 am
Like so many, I found out I had MRKH when I was 17. I'm 41 now and am just learning about the many resources and information available. I had no idea so many were affected therefore for many years I've felt very alone and confused about the condition. I cannot express how grateful I am to have found this site and to learn more and hopefully provide support to those of you who are dealing with MRKH. I am happily married and we have a daughter who is adopted from South Korea. It's because of her I have been able to find peace with having MRKH. I know all too well the emotions of frustration, embarrassment, and fears associated with MRKH and would be willing to visit with anyone who needs to talk. Please know you're not alone.
Alisa said: March 10th, 2014 4:11 am
Hey my name is Alisa. My story might be a little different. I have a kidney and spine disorder along with MRKH syndrome. I know its part of it but it just makes the situation worse. I have a boyfriend and he knows about the issues that I have but I'm now ready to move on we have been together 2 years and nothing is happening and I feel like I'm missing out on what everyone else is doing. I love my life and have accepted the fact but for once I want to feel normal. I'm now 17 years old. I was diagnosed last year on my 16th birthday (some news right) my family doctor and my obgyn had fault for me to go see someone that knew about this syndrome and has seen it before. So I was sent to Atlanta, Georgia. My doctor was very helpful down there but now its my turn to make a decision. Do I want surgery or dilators??? I'm not really sure. As the past year has went on I have been building up anger around me and my family. I don't know who to blame for this....I just really want to connect with someone that really understands me and knows what I'm going thru.
Nicole said: March 12th, 2014 10:40 pm
My daughter was recently diagnosed with MRKH. We are looking for a physician in the Chicago area that has experience in treating with dilators and would appreciate any recommendations.
Paige said: March 17th, 2014 2:42 am
I was diagnosed with MRKH just before I turned 17, sometimes I find it difficult to deal with mainly due to not being able to carry a child and not really being able to have sexual intercourse, I have been given dilators to use but find it very uncomfortable and have come to almost dislike having to use them. Due to my mother getting breast cancer at a very young age and having it again 3 times in 6 years the doctors have told me that I also have an increased chance of getting it as well later on. I am now 18 and still find it difficult to accept these things, a lot of the time and tend to push the thoughts away rather than dealing with it all, I sometimes talk to my close friend about it all but they are not in the same position and don't really understand what it is like and because of this I often feel alone. I worry a lot of the time about how I will tell future partners and how they may deal with the situation. However whilst reading the emotional stories on this site I am less worried about the situation, and believe that I can find someone who will love me no matter what and will help me to deal with these things. I now also feel that talking to someone who is also diagnosed with MRKH will help me a lot.
Fiona G said: March 20th, 2014 3:15 am
Hi all, I am a 30 year old lady who has dealt with MRKH as best I could since the age of 15 and the dreaded diagnosis. At first I considered becoming a nun... but later I used Dialators and have had two wonderful long term boyfriends (the second of whom is going to be my husband in a few months!). So for all younger sufferes - there is hope. I can't say how I did it, but I'm stubborn by nature, and a heart on my sleeve person, so I've trusted a few select few friends, family and later partners with knowing my 'true self' and they have supported me pretty much the whole way. Now... I'm dealing with the excruciating pain, of having my sister give birth to twins a few weeks ago. The pregnancy was horrendous to watch, my family was torn apart, my mother especially. I don't exactly feel understood, and the pain and sadness I feel is sometimes a bit scary. Would anyone have few nuggets of advice, anyone gone through this period of the process? How did you cope? Any suggestions? Its hard to know what the right thing to do is. Thanks so much for this website - and bravo the girls who set this up!! You're incredibly courageous and I applaud you.
Lauren said: March 20th, 2014 4:08 am
to add to rachels comments about Canadian doctors with knowledge of MRKH (which are few and far between, but getting more with time) in London ON Dr. M. Rebel is a great doctor - sweet understanding and compassionate . I have only recently started seeing her but she seems eager to help.
Angela said: March 30th, 2014 2:46 am
My name is Angela. I was 15 when I knew something was different about me. Went to many different doctors and they knew nothing. They said I was a "late bloomer". I had pain once a month so bad I didn't go to school or I would get excused to leave. Then I was told I did have a uterus and then I didn't have a uterus. This went on and on and then I finally requested a new hospital. There the technician saw my uterus but it was tiny and off to the side. She asked If i was sure i was told I was substance of a uterus. I said yes. She said I'm just I tech but I want to be the one to tell you that you DO have one but its small. After that they did surgery to remove it because I had already reabsorb so much blood and since I was born with no cervix and Fallopian tubes, they couldn't fix it anyways. So that's how I knew I had mrkh but I have the MURCS form of it because I never made it about 5ft.
Blanca M Lopez said: April 8th, 2014 9:50 pm
I was diagnosed at 16 years old, my mom was worried about my menarca, my first period, And then everything happened, I had a Surgery only to find out exaclty what was inside of me, In Mexico it is really complicated to find a right diagnosis, well after 6 months and several doctors who were shocked because of the lack of Uterus in myself, i found one who really helped me, and never made a funny face when he found my clinic history je, well after 11 years today I am having a bad day, just remembering that i couldn't ask anything when I had Surgery , My mom had to explain everything after that because i was really shy, and young somethimes i think i was stupid because i wasn't able to speak for 3 days after the cirgury, i do not know whay was i so closed about it, now that i look it back i cannot rememeber everything, parts of that time seem to be gray incompleted, i remember that 4 days afet beeing at the hospital i woke up thinking it was a nightmare, i really believe it, it was until i felt pain in my belly that i discovered again what really happened, i was told that I wil lnever get pregnant, never feel what a period is, and since that moment i was told my ovaries may stop working and that i will have to start having exams every year of my life in case i would need hormons, to avoid illness like cancer or worse, as i says in Mexico it is complicated to get a clear explanation about what is going on with you, now I have investigated a lot, and I have found that I am a real Woman, no matter if I can carry a child or not, families are built in many different ways, well that is my story, this is the first time i get open with more people who is not my family or close friends :)
kari said: April 10th, 2014 2:09 am
I found out when i was 16 its a really hard thing to find out when your 16 years old that you cant have kids i mean you ask your self waye and you think your the only one bit we are not alone im 28 years old now and i have a b/f and he unberstands and love me for who im
Kylie said: April 13th, 2014 11:03 pm
My story is all so similar to every other girls here. The funny thing is although I was diagnosed when I was 17 and I am now 32, I have only just discovered the name of my condition 2 nights ago!!! and that was by sheer coincidence! If only I had found this website all those years ago!
Donn Hayden said: April 14th, 2014 3:07 am
Just saw this on FB and thought even though you probably are aware, I'd post it just in case.... http://www.businessinsider.com/lab-grown-vagina-implants-2014-4?nr_email_referer=1&utm_source=Triggermail&utm_medium=email&utm_term=Business+Insider+Select&utm_campaign=BI+Select+%28Wednesday+Friday%29+2014-04-11&utm_content=emailshare
anonymous said: April 20th, 2014 10:50 pm
I was just diagnosed with MRKH, and I am currently 15 years old. This is really hard for me, but I know I'm not alone. I'm thankful for everyone and their support.
Sasha said: April 28th, 2014 6:30 am
Hey I was diagnosed with MRKH last year, since then I have found it very hard to deal with it, I went and spoke to a coucillor about it but I found it made it worse. I only found our I had MRKH because I was in and out of hospital with horrific belly pains, when my doctor done key hole sugery it took my parents into a room and said its not good news to then be told I was born with half and then nothing the other side. After many MRI scans in london it came to light that I hadent got a womb at all just grew abit of skin that over the months blood was building up in it and would never go so when the next month came the month before blood and then fress was building up into this tiny little sack, and that's why I was getting the pain. I would like to hear if anyone can help me and speak to me about how they got through it please feel free to email firstname.lastname@example.org and we will forward your response to Sasha. Many thanks Sasha x
Leah said: April 29th, 2014 4:55 am
I was never diagnosed, I only just realized there is a name for this. At 16 I went in for my first ultrasound and I was told it "looks like Lake Ontario in there"...they couldn't find anything except for two "structures." I was informed I didn't have a uterus and as I rolled over and broke down the technician rubbed my back and said "well honey, at least you're pretty." I wanted to punch her in the face. I had many more tests done, to see if I was genetically female, to find out what the "structures" were (ovaries, it was finally decided after many tests), I have cysts on my ovaries that like to burst and I have been tested 3 times for ovarian cancer (negative each time thank God). I was also born with only one kidney and with ribs missing along my left side. I am now nearly 31 and will share the information I am only learning about today with my gynecologist when I next see her. I've always felt so alone and like such a freak because of this and it is comforting to know I'm not the only person experiencing having to explain to men I've dated what the situation is. Thank you for all the great information and now I have name for what is different about me!
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