Elaine's Story

[Received Sept 2002]

I am 31 and have CAIS. No-one has ever told me this but on reading the diagnosis and other personal stories on the AISSG web site I'm certain. Not long after I was born it was discovered that I had a double hernia. This was followed by regular visits to the hospital over the next 14 years when doctors would examine me and then send me off to a play area while they spoke to my parents (even in my early teens they sent me out of the room). Then when I was 15 I had an operation to remove the hernias. Afterwards I was prescribed the contraceptive pill "Loestrin" as HRT, which I still take. Over the years I have had snippets of information from my parents and doctors such as the lumps were undeveloped, misplaced ovaries, I would never have periods, and I was infertile, but I was never given a name for my condition and felt that I must be unique.

I couldn't ask anyone about it when I was growing up. It appeared to be a taboo subject at home (it was only ever discussed briefly during hospital visits) and my GP always managed to evade the questions, saying that lots of women could not have children and apart from that I was a normal woman. My teenage years were difficult and quite often I would like awake at night upset - you only live once and what a life I had ended up with! I started to drink quite frequently and mixed with the wrong crowd, getting myself into a few scrapes.

During my early 20s I learned to accept it all a little more and entered into my first long term relationship. Sex wasn't really a problem - only the first few times were painful. I did have a hang up about being naked though due to operation scars and a lack of body hair and would avoid being in this situation unless the room was in total darkness (although I still usually insisted on keeping my nightie on!). I never told my then partner about my condition - he knew I was infertile and accepted it saying that we would cross that bridge when we came to it and that a lot could be done for infertile couples nowadays.

At about 26 I went to see my doctor about some totally unrelated problem and thought I'd ask her one of the questions that had been niggling at me - whether I should be having smears (the surgery had mistakenly sent me a couple of reminders that I should make an appointment for one). To this she replied, "No you have no womb, therefore no cervix. You were born with testes but it was decided as you had normal external female genitalia that you would grow up as a girl". She must have seen the mortified look on my face then and she added, "Yes, you are one of them" (which made me feel rather like I belonged to some leper colony). I don't know how I managed to drive home from the doctors after that as I was trying to take it all in. Why had my parents never told me this? When I got home I asked my Mom if she had known and she just nodded sympathetically. At the time I felt angry that my parents hadn't told me although I do believe now that they thought it was for the best. For months afterwards I would stare at my reflection in the mirror and wonder if I looked masculine in any way.

Shortly afterwards, after 6 years together, my partner and I split up. He was having problems coming to terms with the fact that I could not have children, as was I, but he could walk away from the situation. This was a very low point for me but I pushed it all to the back of my mind and tried to carry on as normal.

I have changed a lot over the last couple of years and have quite a positive outlook on life now. I have learned to accept the way I am, knowing there is nothing at all I can do about it and I firmly believe that life is what you make it. The only people who know the truth though are my parents and doctors. I have never felt I could tell friends as I don't want to feel like the odd one out. I'm also in a new relationship - my current partner doesn't know about my condition and I don't feel the need to tell him. He believes I just don't have that maternal instinct and I've always been very career minded. He already has children from a previous relationship anyway.

That's it, my story. I would just like to add that I came across the AISSG web site a month or so ago and I'm extremely glad I did. It is a very informative site and through it I have found answers to a lot of questions that I could never ask anyone. I have subscribed to the group and look forward to meeting you all at future group meetings.