Sasha's Story

[Received Oct 1999]

I am writing this on the one year anniversary of my being diagnosed with CAIS. I guess I feel the need to tell people about my story because when I was first diagnosed, I knew absolutely nothing about AIS. I felt totally alone and scared. My feelings have changed a lot since then, and I want people to know this.

It started a few years ago; all of my friends were getting their periods and their bodies were changing. Although I had some breast development, by the end of my sophomore year, I still had not had pubic hair growth and I hadn't started my period. This had been a concern of my parents and myself since the start of my freshman year, but my family doctor basically blew us off and told us that we had nothing to worry about.

I became VERY concerned when I entered my junior year and still had not gotten my period and had no pubic hair growth. My mother took me to an ob/gyn to have an exam done. I was extremely nervous throughout the entire exam, but the doctor was very nice. After examining me, he told me that he wanted me to have some bloodwork and tests done, which scared the hell out of my parents and myself. But I went through with the tests anyway. About a week later, my parents and I met with my doctor. Before he even started telling me about my test results, he told us that what he was going to tell us might be difficult, which did not make me feel good at all. He then went on to explain that he had been doing research and contacting doctors throughout the US and Europe and had reached the conclusion that I had Complete Androgen Insensitivity Syndrome.

After he explained what this involved, I was shocked and mortified. How could this have happened to me? I would never be able to have children, I would have problems with sexual intercourse, I would never have pubic hair, I have testes inside of me...the list just kept going on and on through my head. My mother basically lost it and blamed herself for my diagnosis; my father tried to be supportive but didn't really know what to say or do.

I went through a period of depression (which still affects me today, though not as much as before) and I went through denial. How could I tell my boyfriend or my friends any of this? Should I even tell them this? Luckily I was blessed with my boyfriend Joe; he had known that something had been going on, but at first I was hesitant to tell him. After discussing it with my parents, I finally decided to tell him. I knew it was a big risk (and especially at my age...I'm 17 and my boyfriend is 19) but I felt that I could tell him. I sat him down and told him, and he was really supportive. He continued to support me through my surgery that I had to remove my testes (I had the surgery in April of this year) and we are still together to this day. I also chose to tell two of my very close friends; they cried with me, they held my hand and stayed up with me for many nights when I was uncontrollably crying and depressed.

My doctor has been very supportive, by far. At first, I felt like I was a freak; I just kept thinking "How could this have happened? How can I have male organs inside of me?" My doctor sat me down and explained to me that I was not a freak and that I could lead a very normal and happy life. I am so grateful and I'm blessed to have the doctor that I have. My parents are dealing with my diagnosis very well. My mom and dad still get sad and depressed, knowing that I will never have children of my own, but they have been very supportive of me. Something that I still worry about is my scar from my surgery in which my testes were removed. Although it is very low and you can't see it when I wear a swimsuit or underwear, I still have to look at myself everyday and my scar reminds me of who I am. It makes me very self-conscious and I don't want anyone to see me naked. I guess this is something I will probably deal with for the rest of my life.

I've not let CAIS stop me from doing what I love. I'm a senior in high school; I'm on the honor roll, student council, varsity cheerleader, chorus, etc., and I have already been accepted into the college that I want to go to, which I will attend next fall. Everyday I wake up and I go to bed knowing that I have CAIS. Everyday it is a struggle for me. But somehow, I have come to realize that I am a good person and I can't let this rule my life.