Louise's Story

[Received May 2002]

Louise, Aged 26, MRKH

I had a hernia operation (removed ovary) when I was about four years old and they told my mum not to worry, as the remaining ovary would do the work for two.

When I reached 14/15 mum insisted that I go the doctors as my periods had not started. I have to confess I did not care that they hadn't as I had heard from friends that I was very lucky and what a pain they were! The local GP said they would not do anything until I reached sixteen as I was developing breast/hair etc… and again was told not to worry.

Upon reaching sixteen, I was yet again dragged down the doctors (you could nearly say kicking and screaming as I still did not care). I was then told that I would have to see a specialist to see if the could kick my periods into starting with hormones. I saw a very lovely Doctor Armitage (Royal Bournemouth Hospital) who took blood and prescribed the drugs and she told me to come back shortly

In the mean time I had found myself a boyfriend. Even to this day I cringe in embarrassment as to what he must think about me. As you can imagine we had a few problems, I thought it was because I was nervous and so I was plied with alcohol to help me relax, and of course it didn't work. That relationship didn't really work out anyway (I was only 16/17).

I eventually told my mum I thought I was having problems (I am so thankful that I was able to tell my mum, I do not know what would have happened if I had been unable). So we headed off to the local family planning clinic together. Here I met wonderful Doctor Parker. After explaining the situation she asked about my periods and it came about that Dr Parker worked with Dr Armitage at Royal Bournemouth Hospital.

Eventually after a lot of prodding and pocking in the region by both Doctors, I was then asked to see a Mr. Evans (Gynaecologist) at Bournemouth. Again after lots of prodding by him I was told that I probably have a very "difficult" hymen and that it would need to be broken and that, that would require an laparoscopy (sorry spelling) operation.

After the operation (or lack of one whichever way you wish to look at it) I was told what my condition was and the implications. Various things flew through my head some of the worst being that I was a freak, but the really funny thing was that he was telling me something that I subconsciously already knew. (I vividly remember a dream from when I was around 13 year old; I dreamt I was pregnant and that the doctors couldn't get the baby out because some one had sewn up my vagina.)

I was also told on that day that I would have to have an operation to rebuild by vagina. I found Mr. Evans unsympathetic and more interested in what he could gain from using me as his lab rat (I think we can safely say I was his first case he had ever seen), but I was also told that I would have to be treated in London, as they did not specialise in treatment for MRKH in Bournemouth.

I was angry after finding out, because I felt sure I could have found out years before when I had the hernia operation. I did not care about the fact I could not have children, all I wanted was a "normal" vagina. My mother was in a worse state than me about the whole thing.

Eventually we got an appointment with Mr. Edmonds in Queen Charlotte's Hospital in London. This gentleman I believe is one of the UK's experts in this field. Shame about his bedside manner. I'm sure he sees cases like this every day, but it does not make it any less traumatic for the patient. It felt as if I was visiting my GP with a common cold, and that I was really wasting my time until I got a proper boyfriend and could therefore then be considered for treatment, if I was mentally mature enough, and that I would not require any operation as I would be using dilators. I quote from a letter to Dr Armitage from Mr Edmonds;

"I am thoroughly familiar with this condition and have hundreds of girls in the same circumstances."

I did stay in London for a few days so as to teach me how to use the dilators (the nurses were wonderful) I do not wish to sound any way discouraging but I hated doing do it. I found it painful and progress was slow, I eventually gave up and decided I would worry about it later.

I then obtained a boyfriend whom I told. We tried sex a few times but I just found it painful so gave up. I do believe I was lucky to experience a relationship where sex did not involve penetration and he was okay with the whole thing. About two years later we split but we are still best of friends.

I did get another boyfriend and this time I decided to just grin and bare it, as I really wanted to have sex just like every one else. This boyfriend also understood. It did not take long for my vagina to stretch but it did take a long time to for me to associate my vagina with pleasure and not pain.

A couple of years ago I asked for my remaining ovary to be found as they could not find it on ultra scan, after an internal ultra scan (never again) it was found just above my vagina and that it was producing eggs which I hope to find out shortly if they can be extracted.

Several more boyfriends later and here I am. I no long ask the question, "Why me?" and as awful as it sounds I no longer feel a freak or different from any other person walking person walking down the street. I am just a woman who can not give birth to her own child and as I am at this present time not interested in having children (although I am aware this could change as I get older) and I am not to worried. I still feel anger towards all the male doctors (coincidence?) I encountered as I found them rude and unhelpful, but the female doctors were lovely and encouraging at all times.

I also still think my mum had more emotional problems dealing with me being diagnosed with MRKH than I do or did. Nine years after finding out, it at last is not the first thing I think about in the morning when I wake up and I do look towards to positive signs, no periods (shame about the moods swings, spots and sore breast every month) and luckily my boyfriend is not hung like a donkey!!! (my only fear left).