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Return to Page 4Post reply
re: were going to have surgury
Feb. 27th, 2007 8:48am
Lisa, I really feel for you. I see no one has responded. I know you got a lot of response on the main board, that may be why. I am sorry you feel betrayed by Bodies Like Ours. I think when someone has a surgery that turns out bad, they feel violated, and with good reason. The choice was taken from them. What choice? The choice to have "abnormal genitals". If you have no feeling down there, then imagining having feeling in your genitals, regardless of how it looks sounds like a better alternative. I dare say, I would agree with that viewpoint. I think the people most passionate are those who had crappy surgeries. I heard their stories and my heart broke. I did not want this for my daughter. I never rested on a decision. The more I investigated, the more I found women who had successful surgery. They are busy living their lives and I wish we would hear from them more. When someone is truly intersexed, I think waiting is a good choice but not without problems. With CAH, the question is- can this girl escape surgery? We know that vaginaplasty and reduction done as a one stage procedure gives the best cosmetic results. I don't see anything wrong with an enlarged clitoris and I would view it as an assett. However when a clitoris has erections and I don't mean swelling,it seems most children who's parents waited will complain, usually around your daughter's age. I would try to see the advantages of your daughter's age. She will understand completely why she is having surgery. My daughter who is 2 did not, she was probably scared and confused. I explained what I could. By the way, she would be scared and confused if she was in there for tubes in her ears or to get an apendix out. Your child will remember her surgery and how you and her came to this decision. I think you could turn this into an empowering experience for her. Even a teen going through this would need some therapy, maybe Cares could help you with that. It would have been great if she could've escaped surgery and quite a few do. I think it really depends on the degree of virilization, and the individual. I hope one day parents having a child with CAH will have access right away to a psychoendocronologist. Forgive me if i spelled that wrong. Also it would be great if we had better guidelines for if surgery could be delayed or done early. I think in the next 10 years we will. There will be more studies on the functional outcome of surgery for CAH. I hope I have not offended anyone with my words. I searched desperatly through ISNA, Magic foundation, to find an adult as virilized as my daughter who had not had reduction aand was happy. I only found one and she lives alone in the midwest, I think she was happy. You obviously made your decision. I just want to suggest you tell your daughter's surgeon you are highly concerned with function and look for a doctor that doesn't mind if the clitoris is still a bit larger than normal. You need enough erectile tissue left behind to achieve female orgasm. That's all , and I hope more people will respond because I am no expert and there is other views.
jwood
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