Joy's Story

[Received July 2002]

Hi, I'm Joy (my AIS name). I am 32 years old, and I probably have PAIS. I used the term "probably-PAIS" because I know I have XY chromosomes but I don't know the exact 'defect' (I didn't go through the whole genetic inquiery). Any way, AIS is definitly a better term then Male Pseudohermaphroditism. This was the terrible word I was familier with since the age of 15 - at which I was first informed about my situation. Well, not exactly the first time.. ever since I was a small girl I knew that some thing was wrong and that I am different.

There were many "hints": my enlarged clitoris, my mom telling me about not to take off my underwear, ever, in front of other people, even my sisters, (not to mention playing "doctor and patient' with friends), children laughing behind my back at the swiming pool because my old tight bathing suit revealed "a small penis", going to the regular visits to the doctors where my genitalia was examined by strangers, avoiding those excited talks with teenage girlfriends about the "newly arriving periods" which never arrived for me, etc - other experiences we all probably share.

Being the youngest child of a big, religious (and very conservative) family, my "problem" was silenced and burried since I was a baby (only my parents and eldest sister knew) my mother never realy talked to me about it, and it was untill I became 15 that I was finnaly told by my pediatric endocrinologist the shocking truth. But that was about it. Though being sympathetic, except for using a soft voice and handing me a tissue paper when I had burst into a cry, nothing was done to continue treating my psycological trauma. I was prescribed for hormones, and sent away. The same attitude continued at home. Having PAIS became my deepest shamefull secret. I never discussed it with my mother (except for technical matters reguarding my pills), father, or eldest sister who knew, my other brothers\sisters who didn't, not to mention psychologist\psychiatrist.

The emotional caos within me was drriven to the "back corners of my head" and shuttered there, and so it went on through my teenages and later on at the third dacade of my life. I continued not to talk about it with the doctors when I went through the McIndoe vaginoplasty at the age of 24 (though I disscused thoroughly the technical\physical issues, and got all the information reguarding the implications of daily life later, including having sex, when and how often...) but NEVER about how I felt about all this. Even when I had my few relationships with men I invented a "truth" about my differences and infertility: cancer in my ovaries that was treated by TAH+BSO. I repeated that "truth" so much that even I started believing it...

Eventually the "volcano" had to erupt.. all my life I tried to avoid and deny it in order to have a "normal" life with all its other aspects but in the end I found myself drowning and jeopardizing my wellbeing, sanity and the will to live. Only a year ago I started meeting a psycologist that started helping me out of misery and despair. She showed me the begining of the way to understanding, acceptance and peacefullness, to all of which I will awe her a debt of life. Still I have a long way to go through but now it is with a bit of hope.

The discovery and knowing, by this web-site that there are others like me, REAL people, not figures and statistics in the medical literature, is an amazing thing that happened only a month ago. Reading all these personal stories was like viewing my own lifestory. It has such a healing power. From what I read I belive I'm not the only one who feels like that. And I am thirsty for more...

I have so many questions!! for my fellow XY females as well as for the doctors. I don't know if it is the right place to ask, but I will, even for the sake of having (at last!!!!!) the opportunity to be able to talk to some one who can realy understand and unswer... Are there people whom are willing to share with me their experiences, questions, doubts and fears reguarding:

1. Getting into intimacy with men, physical and emotional, DOES TELLING THEM THE WHOLE TRUTH AND NOTHING BUT THE TRUTH ALWAY WORK, OR ALLWAYS SHOULD BE TOLD??

2. In order to do the family genetic exams- does it have to be in the UK?

3.Vaginoplasty: (I went through McIndoe procedure, that is not functioning well and is shrinking, inspite of the use of dilators untill now - 7 years later.) Is it painfull for other women too? Is penetration difficult reguarding length\depth, angle?

4. Being a PAIS patient: is there any one who can tell me about the 'side-effects' of HRT; Should I use estrogens + progesterone or estrogen alone, is there any sence in using progesterone at all, considering the fact that I don't have uterus or cervix to protect (like XX weman in menopause on HRT). Being on HRT for 17 years, should I go now, at the age of 32, to reggular mamographys and bone density tests.

5. I am from Israel, and here it seems, like in many other countries, the doctors are not willing to comunnicate between AIS women, because of patient secrecy issues. Are you in contact with any\many of them (according to extrapolation of the statistics from the U.S.A there should be about 100 patients here in my country). Maybe we could, with your help build our own sub-support group.

6. Do you know about PAIS grade I \ II patients that where brought up as men, and live their adult life as males? Is there a possibility to contact them through the website?

I may have loaded you with a lot of questions, I hope you won't hold it against me, I'm simply very excited... with hope to hear from you (any one) soon.

Thank you for "listening" (this story is for the web site).

Joy