Ariel's Story

[Received July 2001]

I can't believe that I am telling this story, since that I haven't told a soul. Please bear with me.

I must say that your stories are quite interesting and familiar. I was diagnosed with AIS when I was 17. I, too, had all the warning signs of AIS, but doctors chose to ignore them. When I was five, I had a hernia repair operation. My doctor at the time thought that we should've ran a test for AIS, but they chose not to. The surgeon that did the necessary "repairs" reported that "everything looks normal," and he could see a uterus. Well, fast forward 12 years later, and you would've found a young teenager that was confused about how she looked. Outwardly, I was the typical teenager -- dating, but never wanting to have sex. No pubic hair, but developing breasts. I looked like a female. I went to my doctor right before my senior year in high school because I was not getting my period.

I knew that it was something serious when she decided to run a chromosome test and do one of those things that pregnant women have done when they want to see the baby. The next day, she called my house and asked us (my mother and I) to come in to "talk." I just assumed that this was something that could be solved with medication. That was the day before my senior year of high school began. I was having such a wonderful day! Hours before, I was getting my braces off!!

What I found out was quite a shock....one that I am still not over yet. My mother immediately blamed herself for all the problems that I was having. I am now 23 years old, and the only people that know are my parents, my two sisters, and a brother-in-law. I have not told a soul.

Incidentally, my sister does not have AIS, but she has extreme fertility problems. She, her husband, and I are the only ones in the world that know. According to her doctor, her uterus is extremely small. Could these two conditions be linked?

I have wonderful friends, the kind that would stick by me through it all. But, after being diagnosed, I did not want people knowing me by a label of having some kind of freaky disease. I want people to see me as someone who can do many things, not someone who can't do some things-like having babies

Anyways, I am on hormones now after having my "gonads" removed. That took place after my freshman year of college. It was immediately followed by a severe bowel obstruction, and I ended up in the hospital for 9 days after another surgury. The doctors believe that this happened because I got extremely sick after my hernia operation? I don't know. So I have three incisions: two are in a straight line that runs across my pubic bone, and one straight down around my belly button and ending on my pubic bone.

The surgeon was an endocrinologist expert and suggested that I start with the dilators soon since my vagina is not fully developed. This scared me so much, and I still haven't done anything with it.

I have a wonderful doctor now. She is a specialist's specialist. She understands this disease. She always asks me if I am dating anyone. I have dated, but I just haven't found anyone that gets me excited. I want to be with someone, but I don't want to burden anyone with such a complicated issue. I do feel more romantic connections to men and I want to be married someday. In the meantime, I feel like I do underhanded things to make it so I don't have to get too serious with anyone that I am dating.

Sorry that this is so disorganized. I hope y'all can understand it!!