Emma's Story

[Received Nov 2004]

I found out that I had CAIS when I was about 10 years old after telling my mum about a sex education lesson we had had that day at school. She told me that I would never be able to have children and that I would never go through the same stages as other girls. She made up for this disappointment by saying that I was lucky that I would never menstruate and that I could always adopt child if I wanted to. After that we never spoke about it much and I think that this was really because I took the news so well and my parents didn't really know much about the condition and couldn't explain it properly.

At ten years old I wasn't too bothered about what I had been told. Having children was the last thing on my mind and I started to plan my life without giving children a second thought.

I found out what the condition was called by accidentally discovering a letter that my parents had received from my paediatrician when it was diagnosed after I had an operation for a hernia as a baby. The letter also gave details of the support group. I tried to find out about the condition and although I searched through libraries and books it wasn't until I was about 16 or 17 when we got connected to the internet that I discovered the AISSG which I found as a brilliant source of information. I still carried on planning my life without children and because of this I had also decided that maybe I would be quite happy living on my own and I wasn't interested in dating or looking for a partner. But, around the same time I was receiving what I considered to be some rather unwanted attention from a man I knew through the marching band that I play in. I tried to ignore him as I didn't want to get into a relationship and didn't want all my plans for my life to be interrupted or changed. Also he was about eight years older than me. I eventually gave in and agreed to go on a date with him just before Christmas 2002. I moved in with him at Easter 2003 and we got engaged in June the same year.

Quite early on in the relationship I decided to tell him about the CAIS as I didn't want to get too attached and then break up because I couldn't have children. You can imagine my relief when he told me that he couldn't have children either. I believe that this has made our relationship stronger and because he is older than me he has helped me to come to terms with some of my hidden emotions. I also discovered Dr Warne's book about CAIS which has really helped me understand the condition and has been invaluable in explaining it to my partner. I only wish this book had been around when I was diagnosed as it would have helped my parents and in turn helped me when I found out about my condition.

It wasn't until I was in a stable relationship that I realised people's opinion of children. Once we got engaged many people asked us the dreaded question. When we were going to have children. Unfortunately even in the modern world people still think that a man and woman meet, they get engaged, get married, buy a house and naturally settle down and have children. This was what upset me most. I don't want to discuss my fertility with the world and when people asked if we were going to have children I have just replied with "we haven't thought about it yet". I got very upset about being so secretive but my fiancé helped me cope. We are now planning our wedding and the rest of our lives together.

Emma, 22.