Thank you Lynette for wanting to share your story with us !
Hello my name is Lynette Mclane and in 1996 I was told I had Mayer-Rokitansky-Küster-Hauser (MRKH) syndrome. This is my story.
I was 15 years old and all my friends were starting their periods and I was starting to feel left out so I spoke to my mother who took me to see our doctor, We were told as my nanna & mother were late starters to come back in 6 months if nothing has changed, Well 6 months later we were back at the doctors and this time we were told I would be sent to hospital to have a Ultra sound on my stomach to investigate. My appointment came through quickly and my mother & I went to hospital for my appointment and after I had my ultra sound we were called into the doctors room where we were told that the ultra sound showed that I was missing a few of my organs and I would need to come into hospital on a overnight visit so the could do a laparoscopy on me. My mother and I didn’t know what to make of this all as neither of us had heard of MRKH.
A few weeks later I was in hospital waiting to have my laparoscopy, My mother and I were very nervous but also glad that in a few hours we would know what was going on. When I woke up after the operation the doctors was in my room talking to my mother and explained to us both what he had found, basically all I had was my left kidney, right ovary and even though I had the outside of my vagina the inside was very small so I would need to have another operation to stretch the skin so I would be able to have a normal sex life, We were also told that I would never be able to have children due to having no womb, fallopian tubes or uterus. We were both shocked at what he was saying and found it very hard to accept as even though I was now only 16 years old I always wanted to be a mummy myself.
We were told by the doctor that I would be referred to a gynecologist who would explain more to us and take the next step in my treatment when I was ready.
My mother and I only told family members and my 2 best friends what we knew and they were all very supportive but like us they had never heard of MRKH
I was seen by my gynecologist who explained more to my mother and me & that for me to be able to have a normal sex life I would need to go to a hospital in London and have an operation to build the inside of my vagina using the skin I had inside my vagina that had not grown properly and then I would need to use dilators to keep the skin stretched but this could not be done untill I was in a relationship and wanting to have sex.
At the age of 17 I meet my boyfriend and I told him from the start about my MRKH & that I would be unable to have full intercourse until I had an operation & that I would never be able to carry our own child. He was very understanding and we took things slowly but in time we bought a house together and at the age of 18 I went to London to have the long awaited operation
Once in London I was told what would happen during the operation and that I would have my 1st operation and my skin would be stretched and a mould would be inserted to keep the skin stretched and I would have this mould in for 5 days and then I would have a 2nd operation where another mould would be inserted for another 5 days to stretch the skin more, After this I would have to push the mould out and then I would be shown how to use the dilators. I was very scared to have my operation but also excited knowing that my life was moving forward. After my 1st operation I was very sore and couldn’t move much and felt very sorry for myself but the nurses kept me smiling and were all very friendly. My 2nd operation was ok and felt a lot more comfortable afterwards. After 5 days the day came that I was not looking forward to, having to push the mould out my vagina, I was told I would do this like giving birth to a child and I must be 100% honest that it was agony and I did scream the place down. The next day I was shown how to use the dilators and was told I would have to do this 3 times a day for 5 minutes a time and once I had managed to insert the whole dilator inside to then use the next size up but also try having sex as this would help more than the dilators as then my vagina would mould to the shape of my partner’s penis. After a month in hospital I was allowed home and have regular check up’s with my gynecologist back home. The first time my partner and I had sex was agony but in time it got easier and we both learnt to enjoy sex. After using the dilators for 3 months at home I went back to London for a check up and was told that I no longer needed to use the dilators and they were happy with the progress I had made but was told that my new vagina canal was like an elastic band, the more it was used the more it would stretch and when it wasn’t used it would close over so if my partner and I went a while without sex it may hurt again and feel like the 1st time again. It was so good to be signed off from hospital and start living a normal life again.
Unfortunately my relationship broke down and I was back to being on my own again. I was worried about what my doctor had said to me in London about my vagina being like an elastic band and that if I didn’t use my vagina it would close over so I got back in contact with my gynecologist and explained my worries to him. I was told to help keep my vagina canal open I could use a vibrator, as I wasn’t ready to get into another relationship this is what I did.
In time I did meet someone else and from the start I was open and honest with him as I felt like he had the right to know as I didn’t want to get close to someone who wanted to have his own child when I knew I could not give them this. We were together for a long time before we separated, we did try to adopt but the timing was never right.
I am now with my partner Matthew and like with my other partners I was honest with him from the start. Matthew is 10 years younger than me and I was worried he would want children but he is happy with me and we have our puppy together called Maisie who is like our daughter & we are due to get married in April 2014 🙂
Back in 2008 when I found out I had MRKH I was offered to go to yearly meetings in London to meet other people with MRKH but I never went and when I was signed off from the hospital and my gynecologist I felt like I was basically on my own.
In 2013 I saw an article in the Sun newspaper about a girl who also had MRKH and when I showed it to Matthew he suggested I look on facebook and see if there was a group with other people like me, I had never thought to do this before and I was surprised at what I found. Lise Gimre made me feel welcome from the very start and it was nice to know I wasn’t alone. I have learnt so much from the MRKH group and have met some amazing ladies.
When I found out at the age of 16 I had MRKH I felt like a freak and I thought my world had ended. I had days where I felt down and wondered why this had happened to me. Why was the choice of having a family taken away from me, Why was I born without parts of my body. Why was having sex for the first going to be so hard for me. My mother felt like this was her fault as I was born early and to be honest back in 1996 the support wasn’t there like it is now. We had so many questions that no one could answer.
Growing up and watching my friends, brother’s and sister having children has been hard but I like to think im an amazing auntie and I get to look after my nephew’s & niece’s and hand them back when they are naughty and tired 🙂
To now be apart of MRKH I feel like I have learnt so much more in the last few months that I have done in the last 18 years and I no longer feel alone. There may no be many of us sister’s about with MRKH but were special in every way.
Lynette
MRKH Norge 
Tilbaketråkk: Lynette forteller sin MRKH historie | mrkhnorge
Tilbaketråkk: Kvinnedagen 8 Mars ! | mrkhnorge
It must have taken you guts to write your story online. So proud of you!! And all the others who make people more aware of MRKH problem! I cannot imagine getting to know about MRKH dx at the age of 16..Poor thing dear lady you are, this is such a tough path to pass! I’m not in the case myslef but a close friend of mine is in this..Hardly could I ever think I’d be lookig for right words to support her..Now especially when she’s into surrogacy treatment abroad..
LikerLiker