Cheryl's Story

My name is Cheryl and Im 34 years old. I was diagnosed with CAH at birth. At ten days old, I had my first adrenal crisis that almost took my life. I was transported to a "teaching" hospital down in Charleston SC and it was there they saved my life, but there was a price to pay. I lost my clitoris, my dignity, my freedom. Of course, I was too young to have a voice so my parents spoke for me. They had their only child laying in an incubator with the doctors telling them that I was dieing. The doctors used their weakest moment and took advantage of the situation to obtain permission to use me for their own personal gain. My parents consented to take every measure possible to save my life. They told my parents that I must have an operation that would improve my quality of life and that was to remove my "grossly enlarged " clitoris(which was 2cm), seperate my labia,to deepen and widen my vagina. To this very day , I continue to be bitter, angry and ashamed of what was done to me. I am ashamed of my body and afraid of intimacy. For a very long time , I blamed my parents but I finally realized...they only did what they thought was "best" for me. They were young and naive....frightened and confused. I cant even begin to imagine the intensity of their grief. The doctors "fixed" me and let me go home a month later. Everyone was happy.....the doctors got their "lab rat" and my parents got their daughter back.

There will always be the vivid memories of the doctor visits and this university/hospital, which ironically is now my employer. I can remember as far back as four years old of what was done to me and how they treated me. For years, until I was in my late teens, it was the same routine. I am put in the examination room, my peds doctor would come in and pat me on my leg and say " Cheryl how about lay back and pull down your panties." She never asked me how I felt and my mom just stood by and watched as my doctor would open the door, and in walked several residents. When I wouldnt open my legs, they would grab my knees and force them apart, To this day, I feel threatened when a lover does that to me. I would close my eyes and wish I were somewhere else but it didnt work. They poked and prodded, talked of me as if I werent even there. They never saw me as a frightened, confused little girl with feelings and a soul. They saw me as research material and an oddity. I was the first child to be diagnosed in SC with CAH and this was their chance to make history and discoveries. It was their chance to make a place for them in the medical world. Mom tells me there were photos taken and articles published in medical magizines. I still have not found the photos or the articles that have immortalized me. I dont think it ever occured to any of those so called specialists how great of an impact their actions would have on me for the rest of my life, nor did they care.

I was very sexual at an early age and always very curious. I experimented with boys and girls. That is when I noticed I was different "down there". I approached my mom in my early teens and she finally told me what was done to me. When I would get aroused , I would get an "internal hard-on". I still dont know what it is and I often wonder if this was something related to my surgeries. I am realizing , that Im more fortune than others. I have a very high sex drive and become aroused. I have sensitive areas where my clit is supposed to be and there is vaginal sensitivity. I am a lesbian and it is very difficult for me to be sexually involved with anyone because of my insecurities and fear of being judged a "freak" because of my obvious differences. It has become too difficult for me to have to explain everything over and over again to potential lovers. I was in a long term relationship with my first love and I pushed her away. When we were intimate, I could never relax and would lay there with my eyes closed trying to image I was somewhere else. The same thing I did at the doctor's office.I felt so inferior because of how "weird" I looked and was so afraid of her becoming "turned off " and disinterested because of it. I apologize for being so graphic but I believe this is the only way to help parents realize the emotional damage that could occur due to the surgeries. Our bodies are ours and when someone takes something without our permission, we have lost control and the freedom to decide what we do and do not want.

I did not intend to go on so long with this story and I have actually surprised myself. I have been struggling with the psycological and physiological impact this has had on my life. The CAH and the daily meds I can deal with. The hardest part is overcoming my feelings of self worth and emptiness the surgery caused. Personally, if I had the choice , I most definately would have told them to leave my clit alone. I understand the necessity of the vaginoplasty and the labia seperation. I feel that was detrimental to my health. But removing my clit has left me feeling less than a woman. It should be every womens right to decide what is done to her body and if she is too young to speak for herself , she should be able to trust her parents to make the right decision. To let the child grow and develop then , when she is able , let her make the decision as to what is done to her body. Only she will know her feelings....no one has the right to take that away from her. I can not lay blame entirely on what was done to me. Everyone has their problems but I truly feel it would have been easier for me to adjust and deal with other problems in my life had I not felt so out of control of what was done to me. I hope this helps others understand what degree of impact the surgeries and the doctors have on children and young adults when their rights and freedom to decide is taken away .

Cheryl 

1066@yahoo.com

Organisation Intersex International