Sarah's Story

[Received Oct 2007]

A very brief outline of my story....

I've known I couldn't "have children" since the age of 12. I found out because at this age my Mother gave birth to my youngest sister who had a hernia which led to the diagnosis. I also have another younger sister who may be a carrier.

My Mum found it very hard to cope with the diagnosis and I was told I wouldn't have periods or children, but I hadn't to tell any one, including my Dad (my mum and Dad separated when I was a baby).

I was told when I reached puberty I would have to have an operation to remove some lumps in my tummy. I had an internal examination from a doctor at the hospital and at 12 years old which wasn't the best experience. And that was it, I was left in the darkest place imaginable through my teenage years where nothing made sense, and I was ashamed and embarrassed that my body wasn't changing like the other girls at school and I knew things physically weren't as they should be.

At 17 my Aunty (also CAIS) told me the lumps were gonads, I was devasted and distraught. Nothing else was said or discussed until [I] was 21 and my doctors surgery kept asking me to come in for a smear test. My doctor, after checking my records, referred me to hospital to have the gonads removed and also to have my vagina lengthened.

I faced three lots of surgery alone as I felt disgusting and a freak, and the thought of anyone knowing about my condition felt like the worse thing that could happen ever. The surgery was the worst thing I could ever have done, it was unsuccessful and left me in a much worse state than I was before it.

I have had one relationship in which sex was unfulfilling due to my surgery, and even more so my lack of self esteem within it because I felt I was less of a woman than I should be.

My youngest sister is now a young woman and seems to be coping with it better than I did, however she hasn't treated it like the dark taboo secret that I have always felt like I needed to. In many respects I wish I could start again with it and tell everyone, instead of being been hidden by a wall of self protecting lies, that hide the real me.

There are thousands of other chapters to this very brief story, but I just wanted to give you an outline. I've known about the support group for many years now, but I have never been in a comfortable enough place to discuss my condition with other people.

I have been seeing an endocrinologist about my hormone replacement over the past year. He has been very supportive and I feel that the experience of speaking to other AIS women would be of great benefit to me. Even more so if there are women out there who have had a more positive experience than I have. I no longer wish to live with this alone.