Rachel's Story 

I've known since about as far back as I can remember that I could never have children, and until about the age of eight or so, this never really bothered me. My mom was always trying to tell me what was happening and why I couldn't have kids, but I would cover my ears and run away. I didn't want to know what was wrong, to me, it didn't matter at all. I was happy, and comfortable with who I was, and I didn't want anyone to burst my bubble.

When I was about ten or eleven, at a museum I watched a model of the female body tell about how the typical female goes through puberty. It didn't really connect that because I didn't have any of the things that the model discussed, I wouldn't get my period or anything. This little lecture sparked my interest in genes (we learned about what recessive and dominant genes were) So, when I arrived home, I told my mom all about dominant and recessive genes, thinking how cool I was, and how much fun learning about genetic traits was. It was then that my mother explained about chromosomes, and how they played into genetics. I had never heard of chromosomes, so I was really interested and I wanted to learn more about them. She made a little diagram of her chromosomes and my dads' and she showed possible combinations for children. She then showed how a slight genetic mutation on one of her chromosomes made the match, me, with the XY chromosome.

After that, for about a year I thought that I was going to get my period and wondered when I would, since some of my friends were. I'm sure my mom told me, but I was probably jut covering my ears. It was at my old endocrinologist's office that I learned i would never get my period. The doctor asked my mo when she got her period, because I would probably get mine around the same time. My mom explained to her that I couldn't and wouldn't be getting my period. I was sad, but I pretended that everything was okay and went home that evening.

I didn't really listen again for a year or two, because I didn't want to know what was wrong. I just tried to ignore it, until we moved. I was about fourteen when we were going to my endocrinologist's office. He asked my mom to step out of the room with him so that they could discuss me. But I wanted to know what they were saying, so my ever-supportive mother told him to discuss it in front of me. I learned almost everything I know now on that day.

I learned one major thing that put me on the road to find this awesome support group; I learned that I would probably need to have an operation to extend my vagina. So we went to the doctor's office, where this scary guy tried to do a vaginal exam on me. I was not exactly very keen on it, and decided that I hated that doctor and wanted to see a new one. But I was put under anaesthetic and it was discovered that I had a vaginal length of around 2 cm. So then we went to the surgeon's office, who I immediately liked. We decided on the McIndoe procedure. But I was still very uncomfortable with it and so I told my mom that I wouldn't get anything done until I met someone with AIS. I cried and cried when my mom said I would probably never meet someone with AIS. However, years ago, at my birth, the doctor who discovered my hernia had told my mother that a Miss America had Androgen Resistance Syndrome. I wanted more than anything to just be able to talk to someone else with AIS; I wanted it so much. After a few weeks of searching, my mom learned of the AIS support group. My mom talked to Sherri [US group leader] for hours and hours that evening and the next day I talked to her. That night I was so happy that I cried myself to sleep with tears of happiness. At last, I had spoken to someone with AIS.

A few months later, I went to the 1997 AIS meeting in San Diego and met tons of other gals with AIS, though no one under the age of 20 or so. Then in March I went to the UK for their meeting and stayed with my AIS penpal and the writer of the AIS newsletter. I had tons of fun and a trip of a lifetime! Thanks Sherri et al!! This past fall I went to Chicago for the meeting and met someone around my age (less than a month apart) and really enjoyed myself.

By the way, I'm currently fifteen years old, a sophomore in high school, with CAIS and I'm currently using pressure dilation. I hope this hasn't been too boring to read my story!!

Rachel