Danette's Story

I was born with Congenital Adrenal Hyperplasia in 1966. I am the second of two females born to my parents with CAH. There are only two children in our family. My sister was born four years earlier and had been treated much the same way as me.She had some of the genital surgeries. My parents were told of the possibility of me being born with CAH and they choose to have me. When I was born my sex was unknown until genetic test were preformed. The test came back that I am a female genetically but mentally I a male like. I consider myself gender neutral somewhat a mesh of the two sexes.

I have had nine genital surgeries which I consider failures but my surgeons deemed a success. The surgeries started when I was an infant. I had an almost penile placement of my urethra. My urine would drain back into my vagina cavity and cause massive kidney infections. These infections almost caused my death several times. My mom has said that on several occasions she had been told to just take me home and prepare for my death since all known treatments had not worked. She would then get me in on some type of experimental treatment which obviously worked. If it had not been for my mother fighting to keep me alive when I was younger I would not be here today. Most of these surgeries had caused scar tissue in the vagina. With every surgery on the urethra it was shortened and has caused other problems. The placement of my urethra by my surgeons has lead to a placement that most doctors are not used to so needless to say any type of exam is painful because of that and other reasons.

My vagina is about the size of a pencil which surgeons had been trying to "fix" since birth. I was also born with an enlarged clitoris which seemed to bother all around me. The surgeons had talked my mother into letting them reduce the size of the clitoris. They reduced the size once but it continued to grow because through out my life I refused to take my medicine.I had my final surgery which removed my clitoris at the age of seven-teen. That was back in 1987 when you would think that these barbaric surgeries would not have been preformed. I knew that this surgery was going to happen all my life and I knew when. This lead to apprehension on every birthday since I was one year closer to my surgery.

Common sense tells me that if with every time a surgery was preformed to remove scar tissue or to "fix" any other problem and it caused more scar tissue then maybe surgeries should have been stopped. I guess that the doctors knew better than anyone but me and I say that what they did was wrong and damaging. After my last surgery I now have pain when aroused or while having sex. I have what I can only describe as many red hot needles sticking me were my clitoris was and were my stitches were. I also get this feeling anytime day or night, sitting, standing, walking,or just anytime it decides to come. The pain comes and goes and last anywhere between 10- 30 seconds at any given time. This pain can be enough for me to want to double over but not to be able to because I might be in a public place or at work. I have learned through the years to just act like nothing is happening and keep on going. That is to say I still feel all the pain but not to draw attention to myself I act like I am fine.

I had learned a long time ago that my parents and health care professionals did not want to hear what I had to say or thought. I can not tell you how many times I had heard phrases like these when I would protest any kind of treatment. I would be told "We are doing this to save your life" or "We are doing this to make you normal". These phrases are not reassuring or comforting. These phrases tend to tell a child that you do not care what they think and what others want to do to your body is right. Most children are told that if they do not want another person to touch them then they do not have a right to touch them. In a hospital situation anyone can come in and do anything to the child and the child can not say no. I can remember a scenario like this one happening many times in my life. I would be in the hospital or the doctors office and the doctor would come in with their residents say hi to my mom and maybe or maybe not acknowledge me. Then after saying hi to my mom they would pull down the sheets, raise my night gown and remove my panties. After doing all of this without asking they would force my legs apart so that they could examine me. There could be as many as eight to ten residents standing around my bed. They would then examine me whether I wanted it or not or resisted. imagine what this does to a child's psyche. This has happened to me hundreds of times over my lifetime. This is like being raped over and over again with your parents in the room and bring you to the rapist. I have termed this medical raped which is allowed to go on unprotested since it is by medical professionals who will say that they are trying to save the child's life.New information has been discovered on the anatomy of the clitoris which had not been previously known. To me this is reason enough not to have the surgeries since the nerves in the clitoris have not really be researched as to how big the clitoris is or as to exactly where they all go.

I have felt immense anger,shame, guilt, lack of trust, apprehension, and so many other emotions. All of these are directly because of genital checks and surgeries. I have wanted to die most of my life because of these violations. The treatment to make me normal as the doctors would say has destroyed many parts of my life and psyche. I have found that I am not alone in these feelings. I have talked to many others who experiences have been different and similar and it seems that we have reacted the same. Sometime treatment can be worse than the cure. After speaking with a researcher I was told that parents and doctors concerns are different than ours. It seems that parents and doctors are more concerned about the medical side and we are more concerned about the psychological impact. Living everyday knowing that if you get sick or hurt you can die is easy for me but dealing with the emotional damage that has been caused is not always easy. I have spent most of my life in therapy to try to repair what has been done and I am sure I will spend the rest of my life repairing the damage. Something does not make sense to me and that is if so much physical and psychological damage is done trying to make us normal then why not let us make the decision to have surgeries to reduce the size of our clitoris. It is our body that others are making this decision for. I still would like to ask one question to all parents before they consent to this surgery. Would you yourself consent to having either your clitoris or in male your penis operated on for any reason other than one to save your life? The surgery to reduce or remove a clitoris is purely one for cosmetic reasons such as to not bring shame to the parents if the babysitter sees or the rest of the family sees. The reasons I have heard so far have not convinced me that this decision should be made by parents or doctors and not the one with the enlarged clitoris.

I can not let people near me I keep everybody past arms length away from me. I do not let anybody touch me except for four people. I stay tense just in case someone does try to pat me on the back or touch me this way I can stop them. I had so many people violate my space that I now cherish it. I will never let another doctor examine my genitals under any circumstance even if my life depended on it. I would prefer to die than to go through another exam. All of this is because of the numerous genital checks and surgeries.

Studies have not been preformed on the long term outcome of these surgeries. One possible problem with studies is that many will not want to reveal such personal information to others that is so painful. This is the same problem with asking kids to be in studies since kids will know what is said will one way or another get back to their parents. What young girl wants to take the smallest chance of their parents finding out if they maybe gay or having some other problems.

The physical effects of the surgeries have altered my life in ways that nobody could have foreseen. The first surgery started at when I was 3 to 6 months old. That was the start of a long cycle of surgeries that have caused an enormous amount of physical pain. Some of the surgeries to move the placement of my urethra. The urine would collect in my vagina and cause many urinary tract infections. I have had several times in my life with these kidney and bladder infections were my mom was told to take me home and say goodbye. The other surgeries to enlarge the vagina and reduce the size of my clitoris. I now have scar tissue and a vagina the size of a pencil. I also have pain where my clitoris was. This pain is so severe sometimes that it will almost cause my to double over. It comes at anytime day or night. It happens at at work where I just have to act like nothing is happening and endure the pain.This pain feels like about 20 to 30 hot needles sticking in me at the spot where my clitoris was.The pain last anywhere from 10 to 30 seconds and then goes away. The one thing that I have heard from from numerous people is that maybe I did not have the best surgeon. My mom found the best surgeon in the state of Texas. He operated on my sister and she does not have the problems that I do. From what I understand he now practices in Florida. I have been in contact with many others who have reported that the have a loss of sensation because of the surgery. One major problem is that the success of the surgery is not truly know until many years later.

My surgeon did numerous things that hurt me physically. After the surgery he gave me a set of four dilators to use to keep the opening he made open. The first two hurt when I used them but they could be inserted. The third on hurt and I could not get that one inserted but he managed to and then told me to use the largest one. This one I could not get at all but he forced it in and the proclaimed the surgery a success. I laid on the table wanting to curl up due to the pain but by that time I was capable of dealing with any pain that I felt. I now know the pain of being raped and violated. No person young or old should ever have to endure any of the pain I have.

I lost my marriage after I told my partner that every time we were intimate that it hurt me physically.For a long while I was not sure how to tell her this. Once I finally told her then things between us changed we became more distant. She had a hard time dealing with the fact that she would cause me pain instead of giving me pleasure. This lead to the ultimate ending of the marriage.It is hard to accept that your partner needs someone normal instead of someone who has been altered surgically against my will.We are still friends but are no longer together. This opened up some very raw wounds that I had learn to deal with. I have never felt such raw emotions before in my life. This was a direct result of the surgeries that were suppose to be successful. I now have learned the hard way that my life is to be drastically different than anything I had imagined or planed for. This is also hard for my parents to deal with since they are the ones who made the decisions. My mom feels so much guilt since she is the one who said yes to most procedures.

I did not want any of the surgeries and knew I was different from others no matter how much everybody tried to make me feel normal. I am unique and there is nothing wrong with that. I would have much rather spent my life with a small vagina and enlarged clitoris than with pain and shame and anger. If others had listen to me I would have been happier and in less pain.

The outlook for my life is good but very different than I ever dreamed of.I had thought I would not ever be able to be with someone again but when I say never I am usually wrong. So I have proved myself wrong again when I was looking for friends I met a women.I recently have found a wonderful women who I have told very explicitly what has been done to me. I have tried to scare her off many times but to no avail. I have found out through one of my doctors that if I take certain drugs I can reduce the pain I feel when I make love to my partner. Some of these drugs make me feel really foggy headed but luckily I now take a drug for some intestinal problems that kills pain too. I now know that I can make love to my new girl friend or partner without pain and discomfort because of this drug. I now have to thank god that some of what I need out of life I will be able to get. Life without the touch of someone can get pretty lonely and miserable. I have spent 35 years dealing with all the ramifications of normalization surgeries and treatment for CAH. Please read this story and take to heart what has been said this is very real and very hard to deal with and a normalization surgery should not take the rest of someone's life to deal with.So much with calling this life I live normal or what my body looks like normal.

Send any e mail to Danette@cahourstories.net

Organisation Intersex International