Dorothy's Story

[Received July 2002]

I was officially diagnosed with testicular feminization when I was 26 but that term had been tossed to me by my physician father when I was 18. At age three, I had had an operation for bilateral hernia. I was a rough and tumble child when I was growing up; wanting toy trains and trucks instead of the usual dolls and frills. I loved hunting and fishing with my dad which we did as frequently as possible until my parents divorced when I was six. My difference from XX females did not occur to me until thirteen when I still had not menstruated and my breasts were mere buds on my chest. Still, I was relieved at that point to know I was finally beginning womanhood.

I had begun to develop some pubic hair but no underarm hair. Thought that was rather odd but didn't question it nor bring it up to my mother. At age 15, when I still had not menstruated I was taken to a doctor and given a pelvic. He met with my mother alone who, after that, told me I was merely slow in development. Finally, at age 18 I went into a hospital for a complete pelvic exam while I was under anesthetic.

After that I was told I was born without a uterus and that was that. That same year I became engaged, I had my first sexual experience which hurt at first but the more sex I had, the less painful it became and subsequently enjoyable complete with orgasm. My libido kicked in at breakneck speed. I thought I had discovered the secret of womanhood and wasn't it so wonderful that I had this "gift" for a man. How naive!

I had well-developed breasts, some pubic hair, although very scant and a huge sex drive. I knew I was different from normal women but I couldn't figure out what it was. I visited my father during this time who sat me down and told me what I truly was. I accepted it but felt very, very freakish. I didn't dare tell my fiance and it would have done no good because our relationship fell apart a year after that.

At 26, I found the man I wanted to marry. I told him everything. He said he loved me and didn't care what I was. He was very accepting of the situation. Before we married I was due for a medical exam. The doctor wanted to do a pelvic exam - how I dreaded it but I gave in. There I was with feet in stirrups. He lifted the sheet, took a look, stopped where he was and asked what kind of birth control I wanted. I was shocked! I had to tell him what I was. He finally inserted the speculum into my vagina and found the blind alley. He finished his exam and told me point blank that the testicular tissue had to be removed or it would definitely become cancerous. Three months later and a karyotype test which proved what I had told him, I had the surgery.

After that, my libido flew out the window. I was put on HRT but it did no good. I was referred to a psychologist and for six months I could not convince this man that I had accepted what I was but that I believed that libido is ninety-nine percent chemical.

I have since gotten around all that and have had a normal sex life even though the engine has screeched to a halt. There was a hiatus in the HRT for a short period but the hot flashes were way too intense and sex was too difficult without it.

Do I think of myself as a woman. Yes and no. How can my feelings be otherwise?

Sometimes I think about it but all I end up feeling is that I am an unacceptable freak of nature. I feel as though I am hiding a dirty little secret from everyone and it is my life's shame to carry this secret around with me. Sometimes I am afraid if a doctor is in the same room as I am, he can tell by instantly looking at me that I am not really genetically female. Once, long ago, a doctor did tell me that no one else would know what I am except for a medical professional with a trained eye. Did he mean to say that outward appearances count toward this, also? On the other hand, why should any of us torture ourselves with negative thoughts? Why suffer all kinds of mental anguish over something with which we have no control. We can't go back into the womb and change things. Do I feel equal to any other woman? No, but reproduction, menstruation is merely a rite of passage. Eventually, we all become the same - infertile. Some are born to it and some take the slow train, so to speak. When I was younger I was attractive and had long legs and a cute figure. I flaunted it a few times, too. I thought I had everyone fooled! In the final analysis, I have a handsome husband, an adopted son, a home and good friends but I would never tell my friends my secret. Some things, I believe, are best left unsaid. Why complicate matters with medical complexities? Unless I am stripped bare in the middle of Times Square in New York City, I owe no one an explanation and feel no need to confide in anyone.

I take my life and live it as serenely as possible. It doesn't always work out that way but I make every effort I can to enjoy each and every day. AIS is sometimes the same as living a bad dream. You think about it a lot and then try not to think about it because you can drive yourself crazy. I think of myself as a woman. Even though I feel as though I'm cheating when someone calls me a "she," I'm glad I am assigned the physical characteristics of a woman. I ask "why did it have to be me?!" Couldn't I have been a genetic female, too? That's when I think of Tampax, PMS, ovarian and cervical cancer, uterine fibroids, hirsuitism in menopausal women; not to mention the complications of pregnancy and I am thankful I didn't have those worries. Still, it's not enough to completely erase the anxieties of being what I am.