Dear Averysmom,
There are lots of people with good news but we also have a need to talk about about are own issues to when things aren't going great or if we are anxious.
Each case should be taken on it's own. I would of benefitted from being included in this decesion butthat is just me.
I'm not one to bring up my sex life here as I didn't think it was the right thing to do on a christian family board.
I'd tell you about my sex life as I think people with CAH have a better sex life anyway. The first sex organ is the brain.
I really don't feel female but hey sex is no problem after I tried hard to deal with that it was sex and not the genital exams. (I'm not the only one that feels/felt like that)
The trouble is that people can see that I don't react and act female. Not being a gender maybe is God's way that this is my cross to carry and something that I have to deal with.
I would love for the focus not to be on sex as it made me angry that these things were done to me as a kid for a "normal" sex life later. It seems like the only thing stressed is have sex/ get a guy ...we fixed you and what stress that one is
You have to be strong enough to deal with this decision and other ones you will make in the future.
You have have faith.
Do you believe in Dr. Rink?
Do you believe in medicine?
Are you strong enough to deal will dialation (don't know your daughter's case) if that may happen?
There are no right or wrong answers.
I talked with my Mom about genital surgery and although she didn't think surgery on enlarged clitorises made sense to her ......but me born born with genitals prader four - thought it was the bestthing for me and she would do it again. Like you all she ever wanted was for me to be "normal" and I do try. The Surgeon, I do think he meant well and I use whatever words I want to cope as waht was done caused grief- the surgeon, the endo and students were the only ones in my parents. Gender was/ is very important to them and the surgeon even wrote books that someone born like me is a psycho social emergency. Thus my sliced up to fit into society .....see we all cope in our own way and no way is your kid going to have my way of dealing but rather everyone has there own way.
For every one person like me that should of been left alone and the ped endo/ hospital gave me an apology.....medicine means well. - there are two people that don't feel that way. But, the thing is that you have to be strong to help your kid in that please don't make having sex in a relationship such an issue becuase then it is a forced thing.
I don't believe that an enlarged clitoris should be made smaller and the Endocrine consensus of I believe 2002 stated something to the effect that it is best to wait for enlarged clitorises to be operated on but each case is different and if the mother is uncomfortable and then thinks the kid will be then - no right or wrong answers.
I never should of been touched and really would of made a better male or no gender but then I would have to live in the woods but they were all into "the large uterus" seen on the x- ray that I had and when it all comes down to it CAH is a birth defect and that is what they were trying to correct.
I know people with CAH that have kids and are divorced but CAH still was hard at times as well.
- have to take in account that this is being done in 2008 w/ 2008 medical technology.
-have to take in account that you are having a surgeon that was blessed with more opportunity to do these surgeries
- have to allow us to express and not be just everything is fine 24/7 for anyone.
- have to be strong that you did your best.
- have to be strong enough if dialators are needed.
I was teased about excessive hair (they called me Wooky from Star Wars) and with my muscles ? people have asked anything from are you athletic to are you male?
There are other women with CAH that never had excessive hair issues. I write this because I wanted to show that the genital surgery is just that and there are other things. You don't know how your kid is going to be and it will drive you nuts trying to guess.
Two people have asked me to marry them in the past and I said no becuase I wasn't ready besides trying to be someone that I'm not.
50 percent of marriages end in divorce CAH or not.
I don't know if this will help but the man that did the clitorectomy ...I hate what he did and it made me confused but I know he really meant well even though it failed I used words like sliced and diced ....Chopped and dropped - to cope. He was the one I called after the bleeding from the radiation from my cancer 3 and a half years ago. Because the %^$#$&$ would have the most educated answer... a guess to help and he did.
I could just write a post with good news too but that is my good news and I wanted you to find the good news inside you and you kid's experience.
I found that when I had cancer that I had to live my story of it - the good and the bad becuase other peoples experinces were theirs. I was able to work through my chemo and radiation but other people didn't. It didn't make them bad or worse but what matters is that we all made it and that could be said for CAH.
Oh need to tell you this one to - I got a letter from a man whose wife has CAH. he loved her and thought she was very sexy.
I'm not part of their group but maybe Kelly Leight could help http://www.caresfoundation.org
