Jen's Story

[Received Oct 1999]

I am a 33 year old woman that lives at [addresss]. I did talk to the woman in Los Angeles and became a subscriber to ALIAS. I believe my story could help others because it is has a great ending, so far. Here goes...

My family has a somewhat long history of CAIS so it came as no surprise when they discovered that I had it. Even though my parents were suspecting it (I was born with bilateral hernias) they never treated me different than my old or younger sister. I was a very happy child and am blessed with a close family, who are in the medical field, and a close extended family.

When I was first diagnosed I was 14 years old and was brought to an OB/GYN because I did not have periods, of course. I refused to allow him to do a pelvic because I was too shy so they did a keriotype [karyotype] and confirmed "Testicular Feminization Syndrome"! I definitely prefer AIS thank you very much. He wanted to preform the gonadectomy immediately, but I told him I would be back when I was good and ready... I was pressured into it at 19 by my parents and the medical "standard of care" and still am not sure if I should have had it done. Fortunately, my vaginal length was easily lengthened with dilators and estrogen cream.

My highschool years were good and bad. I was fortunate that one of my three aunts who are affected took me under her wing and helped me through the worst of it. I felt weird and different but ernestly feel that it has made me a very strong woman. Looking back on it, my parents should have taken me for counseling but I eventually went on my own in my 20s. It hard to say if it really helped more than talking to my aunt. Finding others who share your condition is probably the best therapy for an adolescent. It would have been great to have this support group when I was 14 years old.

Because I knew I could not conceive I took advantage of it a bit in college and has some fun. Yes, it bothered me when my female friends sat around and talked about menstral cramps but I told them my history and to not take them for granted!

I have always thought that this condition was given to me for a reason and one of my duties of life was to find out what that reason is. 10% of the population is infertile. I was at least told at 14 years old. Because of that, I felt good in a way because it allowed me to plan my life. I put getting married and having a family on the back burner and threw myself into my studies. I finished college and went to dental school. During dental school I met a great guy who is now my husband of 4 years. He is in the medical profesion and knows what AIS is and loves ME, not my lack of gonads. Last year we had a child through surrogacy. Both of my sisters volunteered to be egg donors and we used a private agency in California to meet a wonderful woman who carried our child.

At 33 years old I feel good about myself and have a great family life and carreer. No I did not have my daughter tested a birth for AIS... that time will come and my husband and I will determine the best time together. She is 9 months old and we are just enjoying her every minute. Currently, there are a few of my friends who are experiencing infertility and are leaning on my shoulder for support. I don't know which is worse, to find out at 14 years old or 33 years old. I refuse to be the spokeperson for infertility however. I have had angst over it and feel good now but am somewhat of a private person. I hope there is a 14 year old AIS girl out there who can read my story and be empowered by it.