Amy's Story

[Received Apr 2000] 

My name is Amy and I have Complete AIS. I was 25 when I first found out of my diagnosis, and to this day have not been able to fully come to terms with my AIS. I've come to a place that I can feel a little comfortable with my AIS, but it has not been an easy road. At least I'm no longer wondering around in the dark withkout a clue to what I might have and if I'm the only one in the ENTIRE WORLD with this condition.

It all began one sunny sunday morning at the age of 9 years old when my mom had taken me aside and carefully told me about how that I would never be able to have children because I was born without certain things that is important for a baby to grow inside of you. She also told me I would have to have an operation to remove some what of an under developed ovary so, that is what the doctor had told her anyway. She said the first one was removed at 6 months and the other at 12. I did not fully understand what to think back then, but went on to feel like the "odd ball” through out life with my peers, and felt like nobody in the world would accept me with this problem. I became very withdrawn from the oposite sex. It wasn’t that I wasn’t attracted to them, but was horrified of them finding out about my problem. I began to date at 19, but as soon as I felt myself getting too close to that person I quickly pulled away. If I could help it they would never know of my abnormality, the thought frightened me.

Several doctors seemed not to know much about to how to fix the problem, so distance was nessisary until my search was up. At the age of 22 I became weary of my search. It was then that I met a man that accepted me of my problem and said that he would take me to a specialist. I believed him and married him with my problem left undone! It may have been the dumbest thing that I have ever done it is a great thing when some one is offering you acceptance which I have never felt before in my entire 22 years by any man. If you are amazed by this story I don’t blame you, If you are shocked by what I am about to tell you, again it would not surprise me. We were married 3 years before I found a specialist in Los Angeles. We tryed several doctors one in which told me that I had Mayer Rokitansky [Kuster] Ha[u]ser syndrome and would need to pay her thousands to have this special and rare plastic surgery done.

Any ways, back to my story, my doctor in LA told me I didn't have [M]RKH, but rather had what they call Androgen Insensitivity Syndrome and was born with male chromosomes. I was in shock for about 2 weeks!!!! She was able to help me with my vaginal agenisis, she started me on dialation therapy at first and then went to the alternative of vaginal plasty. She also offered me a program that would help me out financially. Even though my needs were being met, I still felt empty inside. It wasn’t until I was offered the WEB site to the [AISSG] support group, by a woman who had RKH that I met through the doctor who told me I had Rokitansky. Any how I had rushed to the library because I didn’t have a computer, I quickly entered the address and there I sat for about 4 hours glued to the screen in that small library. I didn’t know if I should cry, laugh or shout, all I knew that I was filled an undiscribable joy, no longer did I have to feel I was alone like the ugly duckling that was always trying to fit in. I got home and sobbed for hours, literally. I'm sad to say that my husband and I are no longer together because of personal reasons, but at least I can finally feel normal and whole as a woman.

If you are reading this I don’t want you to feel sorry for me because that would not solve anything. The reason I'm writing is because I want you to know that there is hope for you and to never give up no matter how dark it may seem. You no longer have to feel like the ugly duckling that was alway trying to fit in with her duckling peers, realize that you are now a beautiful elegant swan and you will become her if you believe!