Dawn's Story

When I was about 12 or 13 years old I was nervous about not getting my period. My breast development and other bodily changes were behind other girls of my age, but I was mostly concerned about not getting my period. By about 16 or so my concern switched to the fact that I was falling way behind the other girls in breast development and changes in body shape. They looked like young women and I looked like a tall skinny 11-year-old. It's funny that I no longer missed not having a period; somewhere along the line I had figured out that it was never going to happen.

At 15, my mother took me to a family doctor because my younger sisters had gotten their periods and I had not. He said not to worry about it and that they wouldn’t do anything about it until I was 16 anyway.

A year later, she took me to a different family doctor. With my feet still in the stirrups and her hands god-knows-where, she bellowed out from under the lap sheet "My God! I can’t find a cervix. You have no uterus! You’re going to need surgery, you’ll never be able to have children, but with enough estrogen we should be able to keep female characteristics." After I fainted and they brought around she said "Well, you’re just a nervous girl, aren’t you?"

She then took my mother into another room and left me alone. I could hear my mother shrieking half-out-of-her-mind as the doctor told her that I wasn’t really her daughter, I was her son, I was going to grow a beard and chest hair, my voice was going to deepen, I would need a sex-change operation to turn me into the man I really was, and that I would probably go insane from all of this. I can’t begin to explain the despair and loneliness I felt sitting alone and naked in that room hearing my mother shriek. (Of course, none of those things was true; the doctor was simply over reacting. If I had Partial AIS and was going to have a masculinizing puberty, it would have happened much earlier than 16, and in Partial AIS, nothing anywhere near as dramatic as the things the doctor said happen.)

My mother never told me about my having AIS, nor what the doctor said in that room until last year. I worked on her all day long to get it out. She told me she would die before she repeated those awful things. I asked if what she said had come true and she said no. I finally convinced her that the words that had been said couldn’t hurt anyone because they weren’t true. Well, they could and did hurt; they had hurt my mother terribly. I can’t believe she carried that secret burden for so long. She has lived her life in fear that I would find out someday. I was furious and in fact, still am, that some doctor got so excited about showing off her knowledge of a rare birth defect that she simply didn’t care that how she delivered the information. All she needed to was refer us on to a specialist.

The next day my mother had me at a gynecologists office. He examined me and then met with my mother alone. He told her that what the other doctor said wasn’t true, that she should never think of it again, and never mention it to me. He said that I was going to be fine except that I would never have children. I would marry and probably adopt. He told me that "half-formed and spread out in your abdomen" story. He was kind and compassionate with me, but always evasive. He (and the two geneticists) told me that what happened to me had no name and that I shouldn’t worry about it. No one told me I was never going to develop body hair or that sexual intercourse was going to be a problem.

I don’t remember much of the next couple of months. There were some medical tests including what I later learned was a buccal smear and the results of those tests determined if I had a "hysterectomy" or not. I was scheduled to go into the hospital for a workup and exploratory surgery. If the buccal smear said so, I would have a "hysterectomy" otherwise I would have exploratory surgery. Well, the tests confirmed that my karyotype was XY, and I had a gonadectomy.

There are two things that I wish my mother would give herself credit for. One is the day after we saw the family doctor, she called and threatened a lawsuit if that information ever left her office. We lived in a tiny community that feasted on viscous, ugly gossip and that doctor’s office was a main source of the gossip. The other thing I really give her credit for is that while in the hospital she protected me from multiple exams by residents and medical students. I have since learned of AIS young women being displayed in front of groups of students and being photographed. I understand that medical students and young doctors need to learn and that they must learn from real patients, but young women with AIS do not view this as a benign procedure. It has been one of the greatest problems for women joining our support group. None of that happened to me and I am glad my mom was able to protect me from that.

I struggled horribly after my surgery. I wanted children and had always wanted them. I hated my body for betraying me and for years refused to look in mirror, even at my face. I struggled with a huge depression and an obsession with suicide for years. Even though I considered myself a feminist and knew that there were other ways to define myself as a woman other than having children, I just couldn’t find one. I needed help that just wasn't available. Somehow I struggled out of the darkness and I felt pretty complete by the time I married at 22.

A year or two ago, a relative had a baby girl with AIS and I strongly suspected that I had whatever she had. I called the new mom and she said that the doctors would like to see my medical records. I told her that I wanted to see them also, but that the doctors who did my surgery were claiming my records were lost. Last year, I made an appointment with an endocrinologist to talk about the risks and benefits of taking estrogen for all these years and to get a definitive diagnosis. I had a hard time after finally being told about AIS. I was upset by my karyotype and that my "hysterectomy" was really a gonadectomy. I was very upset at having been lied to and having my medical records hidden from me.

I have found kind, compassionate doctors to oversee my medical care, I am getting treatment for the osteoporosis that I have from not taking estrogen regularly. However, the best thing to come out of learning about AIS has been joining the support group. Meeting other women with AIS has changed everything for me. I now know why I look like I do and I am less self-conscious about my differences from other women. I feel strong, confident and healed for the first time in 20 years.