Anna's Story

[Received April 2001]

My name is Anna, I have CAIS and I am 39 years old, I am married to Johan (also 39) and I have two adopted children: Mark (5) and Neils (3). I live in Holland. I have one younger brother and sister (my sister does not have AIS).

When I still did not have my period at the age of 16 my mother took me to the gynaecologist. After some test and a laparoscopie (belly examination, sorry but I do not know the word in English) my parents were told that I had very tiny ovaries and utures and that I would never be able to have children (much later I saw the medical file and this was really what that docter concluded, so he was completely wrong, probably never heard of intersex conditions). My parents were adviced to bring it to me gently and to talk about it as little as possible because it would only embaresse me and hurt my feelings. The result was that everthing concerning periods, pregnancies, birth control etc. was kept from me, never talked about in my presence. They would change the subject in order to spair me but it only made me feel very lonely, isolated and weird.

When I was 24, I began to have psychological problems like depression and hyperventilation. Because I felt the need for more information about my infertility, I made an appointment with another gynaec. This woman ran some blood tests and without waiting the results told me that I probably had Mayer Rokitansky and that I had to keep my vagina open with a vibrator. This was before she had even taken the effort of examaning me. After the examination she had to take back her ealier statement, but naturaly I felt completely horrified. At that time I was still under the impression that I was a 'normal' woman with small ovaries/uteres and had no knowledge of the existance of intersex conditions.

I decided to look for another gynaecologist. This man finally ordered a chromosome test in order to define my sex (which I found out later). Awaiting the result of the test I read in an medical encyclopaedia somthing on gender defects. It was completely coinsidental that this article caught my eye but I immediately recognised the signs: no pubic hair, no underarm hair. Woman who look like woman but have XY chromosomes: testiculair feminisation. I was shocked and releeved at the same time.

To cut a much too long story short: I told my boyfriend and parents about my condition. My gynaecologist first tried to tell me that a part of one of my X-chromosomes had broken of but when I asked him about testiculaire feminisation he of course felt very embaressed and admitted. I had my gonadectomy at the age of 26, only two weeks after I found out about my conditions. It was very difficult. Still it took me more then 10 years to get into contact with other AIS women. I never knew were to look. A children-phycologist who works with many AIS girls gave me the website of the AIS Support Group and this opened a new world for me. I was no longer alone but in the company of many other girls and women like me. Never alone anymore, what a wonderfull feeling. Through the group I met _____ [another group member in Holland] and she has become my closest friend.

I was very sorry to miss you all in March [2001 UK group meeting] but I definitely will join the group [meeting] in September or October.

One last thing for now. There is something on my mind which worries my very much. Last November my sister and I started a chromosome test in order to determine whether she is a carrier (because she wanted to become a mom). Before the result came through she was pregnant. A few days ago she learned that the baby she is carrying has AIS. She has always told me that an AIS baby would still be very welcome to her and her boyfriend, but still I feel so very sorry for this child, who does not know what is yet to come. Sometimes I silently blame my sister for beeing so irresponsible to put an AIS child into the world. What do my other AIS sisters think about this? Do you feel it is all wright to consciously become pregnant of an AIS child, or should such a pregnancy better be aborted ??? I do not know, but I certainly do not whish this child to go through all of the pain and lonelyness that I have gone through.