Riya's Story

[Received April 2007]

Hi! I’ll call myself Riya. I was diagnosed with CAIS at the age of 2 due to inguinal hernia. It was a shock to my family as there is no one like me in my entire family. Well, obviously I didn’t know about my condition. When I was 13, my mother told me that I’ll get my periods at a later age than other girls because I had an operation during childhood. At that age I took it lightly. But at the same time my mother advised me not to tell it to anyone, and if someone asks me I should say "I get my periods regularly". This sentence of her shocked me pretty much and made me thought that there is something seriously wrong!

Nine years later, I went for a pre-employment medical check up. During these nine years I had been to an endocrinologist once when I was 14 but no one bothered to tell me what the check up was all about. As advised by my mother I always used to tell (even to the doctors) that I’m normal. I did the same at pre-employment check up. But sonography revealed it all to them. It was a very embarrassing moment for me as they kept me asking whether I got periods and I kept saying "yes I do" and they could see what’s there inside!

I did manage to get that job but the information I got from the check up was that I did not have a uterus. I cried all the way till I reach home. But somewhere inside I was proud about myself that I handled the situation very well and I GOT THE JOB!!! (my first job).

The story went on, there was a perfect secrecy maintained about it by my parents. While alone at home I used to search my place like a crazy so that I could find some old medical report that will help me understand what my condition is.

Then one fine day in the last year, my parents opened up. But they simply said that I’ll never be able to conceive as my reproductive system was underdeveloped. So to avoid any chances of malignancy I will have to undergo a surgery where ‘THIS’ part of my body will be removed. They did not utter a word about AIS or XY chromosomes. ...

Now I was lying on the operation table still under the impression that my underdeveloped ‘ovaries’ are being removed. There were two surgeons, an anesthetist, a nurse and I think one more doctor. The last sentence I heard before I lost my consciousness was a one of the surgeons telling the other "there are some new techniques developed to operate SUCH intersex disorders"……… Intersex? What's that? I had never heard that term before.

The operation went fine. Immediately after my recovery I was put on HRT. But the word ‘intersex’ continued to bother me. I had shared everything to one of my close friends who happened to be a medical student. My parents had told her about me. And the day arrived when finally I came to know what’s wrong with me from her. God I couldn’t believe I had testes… who am I.. a girl.. a boy.. or a ……….

I was scared, I cried... Nothing seemed to help. The next day I found myself in a completely strange world. I thought I don’t belong here.. I am a different species.. and if these people come to know about it they will hate me more than anything.. I felt the world is doing me a favor by calling me with feminine nouns/pronouns and letting me stay with them.

Once I started recovering from the state of shock I searched google to find people from my ‘species’. I found this support group and felt happy that I’m not alone. I cried reading the personal stories of others as I could connect myself with them. This site has been very helpful to me.

I had been in relationship with boys but never had penetrative sex. Because I always knew that there is something wrong and was too scared to do that. I have not yet done vaginal tests but I pray to god that everything turns out to be normal.

To conclude everything, I would say that AIS has not affected me in terms of my studies or career or general lifestyle. I live my life like any other ‘normal ‘ girl. I get very good support from my parents and friends who know. Finally I believe that its not your appearance or body parts that decide who you are… it's what you feel about yourself. And I feel that I’m a girl like the normal ones and in a way lucky to have no menstrual cramps.

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