Elizabeth's Story

[Received Feb 2000]

I've learned what little I know about AIS through dribs and drabs over the years, even though I was diagnosed with what I now know as CAIS at 16 or 17. A product of the provincial high school in which I was such a girly-girl cheerleader, I mentally blocked it out. The very thought of having testes inside me was humiliating. I was even embarrassed that my parents knew about it.

Now I'm 39. I do fit the rather loose "stereotype" of AIS -- attractive, tall, slender, athletic. And now it's all sunk in. I won't repeat what others have written; I'll just settle for "Me too". What I want to share is something different.

I did not have intercourse until I was 34 and I believe the social retardation I suffered as a result of how my diagnosis was handled severely affected my personality, my ability to form intimate relationships and my self perception as a woman. I was given what everyone euphamistically referred to as a "hysterectomy." But I heard the words, "short vagina" said in passing, with no explanation and no elaboration. And it dramatically affected how I saw myself. I was so embarrassed by the very thought of it -- how can you bring yourself to discuss THAT with a middle-aged white guy? Your mother? Anyone? I pretended it didn't matter and though my mother explained all the scientific stuff to me, I was only interested in the practical effect of it all: I couldn't have sex.

Well -- I knew I could try but that it would be humiliating. So I didn't. For worse (or for better) I didn't DARE "go all the way" with anyone -- through college, through law school, and for years as a lawyer. And the longer I went a virgin, the more difficult it was to subject myself to the humiliation of someone rejecting my sex. All types of scenarios were played out in my head: "What??? No hair? What's wrong with you? I can't get it in!!! Oh my GOD! What's that scar? Testes?????", etc.

As I write this, I know it sounds so ridiculous. But I always felt I had so much more explaining to do than any other girl and I couldn't imagine how I could finesse the way I looked and how my body was made without diverting the romantic mood. My fears continued to escalate. By 34, I felt I was a freak, or would be perceived as one. But I took a huge risk and planned to have sex just to get it over with.

Brief intermission: All my life I've been told I was beautiful, etc. Objectively sexy. But this just contributed to my feeling that I was a fraud. I always felt guilty. So being a virgin at 34 would have been extremely surprising -- even apart from the age.

My prey was a lawyer I met at a conference in New York about 6 weeks earlier. So inhibited was I that it took him over three hours of massaging me to achieve penetration. I thank GOD today that he was very much on the small side, or I might have given up. As it was, it turned out to be a positive experience. One of the happiest memories I think I'll ever have is driving home on a sunny day, age 34, knowing that I had had sex. How pathetic it would seem to most people, but it was the first time I felt that I was normal. If only I had known it was possible decades earlier, my self concept might have evolved.

Now, I've had a series of not-so-serious relationships. The sex was good in none of them (except for the fact that it actually happened -- for that I'm always grateful). But there seems to be an effect on my psyche that remains from all those years of not being able to connect in that way. Am I imagining this? I try, but I think that, now, I'll always be too independent to form the kind of romantic, emotional, sexual attachment that most other people take for granted.

If anyone has been through this, please let me know. I'm sure there are psychological implications that haven't been explored. One of the first steps is having someone to identify with. That's what is so great about this website. Another thing I'm grateful for is my mother. She is so intelligent, knows so much about what we've always referred to as "my condition" and is so supportive of me in every way. If it hadn't been for my self-imposed inhibitions, my mother would have been there for me. But, back then, talking about sex was just . . . uncomfortable. Even more so when it had to do with "my condition." Today, I still think of it as my condition and hope that one day I can get over it. But it's hard and the rejection -- if it ever happened -- would reach such fearful magnitudes that I might never trust anyone ever again. Which explains my dilemma, but doesn't solve it.