Jasmine's Story

[Received Aug 2002]

I didn't get the diagnosis until I was one month away from my 31st birthday. However, after all these years I knew something was not working right within my body.

My story begins when I was just 10 yrs old and I can remember sitting in the doctor's office feeling shame and anger. I wanted information. I wanted to know why I was different than all the rest of the boys. I was not developing the way the rest of the boys were developing. I was told by the doctor to give it time you will become this hunk of a guy. In the meantime, I was teased and taunted throughout grade school as my peers [had] seen me as a gay boy. I was very feminine looking and no matter how hard I tried to be and look like the rest of the boys, nothing seemed to work.

By the time I was 14 yrs old, my grades had fallen to a point I was failing out of school. I was placed in a learning disability class which just added to my shame of being in school. I had reached puberty but I still was not developing. My pubic hair was scarce and I had no underarm hair, no chest hair, no facial hair and hardly any body hair. I suffered from server headaches that made me sick to my stomach. A CAT scan was done on my head to rule out a brain tumor. The doctor told me they were cluster headaches. Once again I asked the doctors what's wrong with me. Why wasn't I developing like the rest of the boys. Something was clearly wrong and yet my doctors would not do any test to determine what was going on with me.

At 18 yrs old, I was well past puberty, my skin cleared up. I was adult now. I was supposed to be a man. But I didn't look like a man. I still did not develop any facial hair, hardly any body hair, no chest hair, my public hair was barely there, my voice did not deepen and my underarm hair was almost non present. For some reason the doctor wanted to do a recto exam on me. I allowed him to do so. During his exam there was this look on his face. A look that people get when thing aren't right. He sat me up and said "That's odd, I don't feel your prostate." I remember those exact words. I remember asking him was that normal in males and he said that it was not normal but that some males have very small prostates. I left it at that and did not think nothing more of it.

At 24 yrs old, I learned about Transsexuality. I began to study what transsexuality was all about. I went to support groups and was referred to therapist and doctors. All the people in the group were amazed at how femimine I looked. They thought I was on hormones and had started at a young age. I told them I had never taken hormones and didn't know what hormones were nor what they do to your body. They referred me to a therapist. I spent a year talking with a therapist about my life and why I felt I was a woman. I told her that something was different and I couldn't put my hand on it but some how I knew I was always a girl with a boy's body. She sent me to an endocrinologist. He ordered blood tests and found that my testosterone level was low but nothing to cause alarm. He said that my testicles were small for a male and I told him how I felt that I was a female. He place me on Estrodiol Valerate. I began to live my life as a female.

For 5 yrs, I worked and went to school as a female, My body was fully femininzed now. I had no surgery done to me so I felt a little uncomfortable dating men. The majority of people that I'd come into contact with had no idea what was going on within me. When I went for my doctor's exams, I am asked by the intake nurse when my last period occurred. I always and still do say last week to keep them from looking

at me in a funny way and to avoid the words "I would have never known if you did not say anything." I was referred to a urologist just as a precaution. He too did the recto exam on me and felt no prostate and finally there was a doctor that took interest in me. He was alarmed that he could not feel my prostate and wanted to do surgery on me. My health insurance declined it. They said it was exploratory surgery. After spending about a month fighting my insurance company, the doctor gave up. I never saw him again. A year later, I was referred to a Urologist in Portland, OR[egon] who worked on Transsexuals wanting Orchiectomies [removal of testes]. He did his exam and also did the recto exam and again confirmed that he could not feel the prostate. He gave me an orchiectomy at my request and said that my testicle was abnormally small for a male. I asked him if that could been from the years of hormones. He told me that it was possible. Yet, I was always small in my private parts.

At 30 yrs old (my present age), I still was not satisfied that after all these years, I still did not have the answers to my questions. I signed up with a female doctor. She examined me and I told her that I was born with no testicles. She became alarmed and immediately ordered blood test and a CT exam of my abdominal area to rule out undescended testicles. I was upset with myself for lying to the doctor and wanted to cancel the CT exam and tell the doctor the truth. But my mom encouraged me to go anyway. The results of the CT exam was shocking but proved to me what had thought for most of my life. I was intersexed. It showed that the Prostate and Seminal Vesicles were missing or so small that they could not be detected on the CT film. There is rudimentary vaginal tissues where my vagina would be. There is no uterus or ovaries. My pelvis shows signs of degenerative joint disorder [with] which I have no pain. I think this is just evidence of my hips spreading out. And, I have two cysts - one on my lung and one on my liver.

The conclusion according to the doctor - Testicular Feminization Syndrome. I was referred to Children's Hospital to see a specialist that works with children who have AIS. We talked for a while. He told me that this was something they should have noticed when I was younger. He was very upset that they didn't do more for me. We agreed that I didn't want to be experimented on and since I was an adult and happy living as a female, no further test would be necessary. My present doctor has ordered blood tests just to rule out other health problems and to determine sex chromosomes. In the future, I plan on having a vaginoplasty. But for now, I rather finish school and get my Medical Degree.