|It was 1967, I was a 12-year-old girl, and I will never forget the day and the look of horror on my mother's face.
I was stepping out of the shower, reaching for a towel, when my mother entered the room and pointed to a lump on my groin and said, "Oh my God, what is that?" It turned out it was an inguinal hernia, containing an undescended testicle. But I would not find that out until 32 years later.
I was taken to the doctor and within days, surgery was scheduled, for what I was told, a hernia repair. When I awoke from surgery, my parents were standing next to the bed. I lifted up the sheet, and saw two identical incisions, one on the left, one on the right. I said to my parents, "Why do I have two scars?" My mother, without missing a beat, said, "They also removed your appendix." I didn't know it at the time, but 32 years of lies and shame had just begun.
Two weeks later, I was back in the hospital for more surgery. I remember my parent's insisting that I be placed in the adult wing of the hospital and not in Pediatrics. I now know that they did this to avoid having to tell the other parents what was wrong with their daughter. At the time, I was told it was because I was too mature to be in with the children.
The same two incisions were reopened; I was told they were removing cysts from my ovaries. I didn't know enough about anatomy to question why my ovaries would be located in the exact same area as my hernia and appendix had been. This time I was in the hospital much longer. I remember countless x-rays and doctors I had never seen before wanting to examine me. When it was all over, after recovering at home for two weeks, I returned to school. Nothing more was said to me. Case closed.
A year later, when I was 13, my mother took me out shopping and bought me some beautiful new clothes. We then went to the doctor's office, where we sat in his office, with him behind a big oak desk, smoking a cigar. He told me that during the surgery they had performed on me a year earlier, they had actually removed my ovaries and I would never be able to have children. I don't remember crying. He then gave my mother two prescriptions, one for estrogen, which I was told I had to take for the rest of my life and one for Valium, to calm me down, should I become upset by all of this. That day was the beginning of an addiction to Valium that lasted for 12 years and nearly cost me my life. That night I was allowed to go out with friends and stay out later than usual. That same night a boy kissed me for the first time. I was wearing my new clothes and I had a head full of Valium.
Puberty is tough enough to go through for any adolescent; mine was especially rough, being chemically induced, due to the estrogen. I was considered wild, a bad girl. It wasn't who I really was and through it all I maintained an A average in school. But I hung out with the wrong crowd, it was the 60's, I smoked pot, dropped acid and ran away to San Francisco to be a part of the scene in Haight-Ashbury. I spent time in a juvenile detention center. I was considered incorrigible. As part of a court order, I had to attend counseling sessions with my parents. My surgeries were never discussed. We just talked about what a bad girl I was. Nothing else was ever considered. It was entirely my fault. And I believed them.
I graduated with honors at the age of 17. I moved away from home, got a job and had my own place. I took drugs and slept with a lot of men. I was always trying to connect, with someone or something. I know now, I was trying to connect with myself. I wanted the truth and no one would give it to me.
When I was 21, I moved to Las Vegas. I worked for several of the big hotels. I was a "Call Girl." I kept the high rollers happy. Thanks to the estrogen, I was a knockout, long legs, flawless complexion, huge breasts, and long, thick hair that hung down to my waist. I dated celebrities, had a penthouse apartment, a sports car and a cocaine habit. I was the ideal hooker. I didn't need birth control, the men didn't need to use condoms and I never called out sick because it was my time of month. I was a machine and I was miserable.
When I was 25, I left Las Vegas, got a "normal" job and stopped taking drugs. The Valium that they prescribed for me at age 13 was the hardest to kick. I had a nervous breakdown, become agoraphobic and couldn't leave the house for two years. I was told after the fact that I should never have attempted to stop the Valium on my own. They told me I could have died, that I should have been hospitalized. What they didn't know was that I wanted to die. I just didn't have the courage. And I still didn't have any answers, because I didn't know what the questions were.
Three years later, at the age of 28, I cut off all my hair, packed up my car and drove 3000 miles. I found a job and a boyfriend. The boyfriend lasted for three years, the job for eight. I was a controller of a large corporation. No one knew about my past. I was respected. I made a lot of money. I bought a home and settled down.
When I was 32, I started seeing a new gynecologist. It was routine for me at this point. I had a pap smear and got my estrogen refilled. But something was different this time. The doctor called me the next day and wanted to see me in his office. He told me that the story I had given him, about having a hysterectomy at the age of 12 and where my scars were located, didn't match up. He had consulted a surgeon and had some information for me. He told me what they had actually removed were gonads, but not to worry, that I was definitely female. He asked me if I had any questions. I did, but I was too embarrassed to tell him that I didn't know what gonads were. I remember wishing that I had dictionary with me. I kept thinking, why is he telling I'm female; of course I'm female. I left his office thinking what a jerk he was. It was 20 years after my surgery, the first time anyone had ever attempted to tell me the truth and it went right over the top of my head. It would be another 12 years before I finally "got it."
That night I phoned my mother, who was 3000 miles away. I asked her to please get me copies of my medical records. She told me the hospital had burned down. I believed her. I never thought to call the hospital myself. Somewhere in the back of my mind, I was afraid of what I would find out. I asked her, "What haven't you told about the surgeries I had as a child?" She said, "We've told you everything, they removed your ovaries and you were born without a uterus." I said, "What do you mean I was born without a uterus? You've never told me that before." She said, "We did tell you, you were on drugs, you don't remember." I replied, "I would have remembered something like that" and hung up on her. It was the first conversation I ever had with my mother regarding my surgeries in over 20 years.
I now knew that something was wrong with me, something very wrong. I numbed myself with food. I destroyed my knockout body and in the process built a protective layer of padding around myself. And I went on with my life. I became involved in a relationship with a woman for the first time in my life. It was intense, incredible and at times, impossible. We were together for a year. It was truly fascinating to experience sex from "the other side." It felt natural. It felt right. Even though I knew I wasn't gay (I feel that you are born gay, you don't just suddenly decide to become gay), I now accepted the fact that I was bi-sexual and I was comfortable with it. Of course, I wouldn't understand why I was so comfortable until many years later.
When my job ended, I moved back to California. I started seeing yet another gynecologist. She was very inquisitive about my condition and told me that I had the classic "Ann-Margaret" body: big breasts, slim hips, and long legs. (Although at this point, I looked more like Ann-Margaret on steroids.) But that was all she told me. When I asked her questions, she just kept saying, "You need to talk to your mother." It was 1992 and doctors were still in fear of disclosing information about my condition. I left her office more confused than ever.
During the next seven years, I became involved in two more relationships, both with men. But as was always the case, I was never able to fully connect with them. I always had a wall around me. How can you allow yourself to be loved and feel love, when you don't know who or what you are and you don't love yourself? Needless to say, the relationships ended badly. At this point I made up my mind that I would be alone for the rest of my life. I was always independent; I had been working and supporting myself since I was 17 years old. I decided that I didn't need anyone and withdrew even further emotionally.
In March of 2000, I was home alone on a Friday night (surprise!) and was playing around on the computer. I thought I would try to find out why I didn't have any pubic hair (Isn't this something everyone does?) I did several searches and kept winding up at websites for male patterned baldness. Then I remembered that the doctor on the East Coast had used the word "gonads." I did a few searches and wasn't really getting anywhere and then suddenly I found a website for Androgen Insensitivity Syndrome. I read everything there and realized it was me they were talking about! It was me! They described every aspect of my body. There were personal stories, many of them had led similar lives and had the same surgery and had been lied to as well. It was shocking, it was horrifying and it literally blew the top of my head off. I was genetically a male? How could that be? How could that possibly be? I kept on reading all through the night, I printed out reams of pages. I couldn't soak in enough information. I figured out that I had Complete Androgen Insensitivity Syndrome. I had a name for it! And a grade! I was CAIS, Grade 7. I was crying so hard, I could no longer see the monitor. I was 44 years old and I finally had my questions answered, in cyberspace. Oddly enough, my first thought was, "Well, that's it then. I might as well just check out now, end it all. No one will ever want me now." I cried myself to sleep and woke up several times thinking. "What is that noise?" It turned out it was me, I was sobbing in my sleep, but it was like nothing I had ever heard before. The sounds were very guttural, very primal and coming from a very deep place inside of me, almost as if I was crying from my soul, from the very center of my being. I kept thinking that I was supposed to be the son that my father never had, how I had let him down. I thought this all must be some sort of cruel karmic joke. What had I done in a past life to deserve this?
The next day I phone my parents and said, "We need to talk!" They insisted that all this time they had thought I had my ovaries removed. They both cried. I cried. I honestly don't think they were ever told that I was XY. Although several weeks later I spoke with a relative who told me that years ago my mother admitted to him that it was testicles they removed from me. I asked him if she had ever planned on telling me and he replied: "Never. She would have never told you. Your mother could not handle the fact that she had given birth to a less than perfect child." Upon hearing this, I actually felt more sorry for my mother than I did for myself, and somehow I knew that it was all going to be just fine. Everything eventually works out just the way it is supposed to. There are no accidents in life and I refused to be thought of as one.
The following Monday, I went to my doctor armed with all of the information I had printed out from the Internet. I asked her if she had ever heard of AIS. Amazingly enough, she flipped through my medical chart, going back eight years to my first visit with her and pointed to where she had written "46 XY." I was furious! I asked her when she had planned on sharing this news with me. She said, "I tried to tell you but you just weren't ready to hear it." All I remember is that she told me I had an Ann-Margaret body and that I needed to talk to my mother. Was this her idea of disclosure? She then put down "Testicular Feminization" as her diagnosis on the insurance form. I asked if she could please change it to AIS and she said, "Let's just leave it as is and let the insurance company figure it out." And figure it out they did. A week later I received a letter from them, which stated, "The diagnosis does not match the gender of the patient." When I had originally applied for the insurance, of course I listed myself as female. Who knew? I phoned my doctor in tears. I was not willing to lose my medical insurance over this. She said she would take care of it and she actually said she was sorry. I haven't been back to see her since.
The range of emotions that I have gone through since finding out that I have AIS, have been all over the board. Shock. Denial. Grief. Anger. You name it; I've been there. And to some extent, six months later, I'm still there. But it's getting better day-by-day. Rather than be reactive and see myself as a victim, I became proactive and decided to do something about it. I became co-founder of an online support group "AIS People." And it has been through this group that I have learned to love myself and to embrace my individuality. I have met some incredible people and made some wonderful friends. I have actually been able to help others who are just finding out about AIS and that alone makes it all worthwhile. I finally know who and what I am. Although I describe myself as female, I now define myself as intersexed. It's amazing what a little knowledge can do. Why I had to wait so many years to find out the truth about myself, I will never know. Maybe they were right, I wasn't ready to hear it before now. Perhaps there was a greater plan all along. Through the support group, I have met a man who has PAIS. He is someone who totally understands me and who completes me. Call it fate; call it "divine intervention." I simply call it love.
As I look back on my life to this point, I have no regrets. I can honestly say that I wouldn't change a thing. I now have such a greater understanding of why I made the choices that I did. I have forgiven my parents and more importantly, I have forgiven myself. There is no more shame. If by writing my story, I am able to help at least one other person feel better about having AIS, then it has all been worth it.
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Last update: 22 January, 2014
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