Congenital Adrenal Hyperplasia

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re: Anyone regrets NOT having surgery early? Main Archives Page2004
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re: Anyone regrets NOT having surgery early?
Aug. 29th, 2004   7:37pm

Hi Jo!

Please donít feel guilty, have strength in what you did to how you felt to make it better for your child and there is every reason that things will be fine. There has been people on here that have wished for earlier surgery.

I feel bad for parents when they bring up the teasing part because they are trying so hard to prevent this and kids maybe teased anyway. I guess you are writing about the teasing from the gym showers and it is tough to realize that some of us are surgically alter for GYM CLASS!  Surgically altered to take showers after DOGE BALL ? thanks? (this was all written with a smile of disbelief, please donít be offended) I ended up skipping gym class anyway, I hated it because it was boring and to much standing around. Would of much rather instead of gym class had another hour of math class which would of helped me in the real world. After school everyday, I would get enough exercise taking a riding a 1500 pound horse through a cross- country course of fences and on the off day we would stay in the arena and do dressage movements which takes a lot more athletic ability than any silly thing we did in gym class which was at 8:00am talk about making your day.Get up, freezing cold and take a shower. Stand outside for the bus, pass on flask of liqueur that was being passed around. Get off the bus, get undressed, get dressed in Top/shorts, play a stupid game with people that wouldnít talk with you or you with them regardless of your genitals. Kids are going to be teased for anything and everything but itís how they deal with it that counts, because of the CAH or because of my ethnic background I was hairy in middle school but the excessive hair and acne went away after I was 16 but anyway there was this little blond underdeveloped girl that would aways mention the hair and trust me that no amount of Nair was going to take her or the hair away. "Aimee, you have hair everywhere" she would often say. I would reply," and yes but why are you looking?" then all the girls would laugh at the situation or at her maybe because it really didnít matter. All the endos would lie and say "what hair ? " with smirks. I enjoyed reading my medical later that mentioned the excessive hair which was a concern. It would of helped me if they hadnít B*S* me about it. I would get teased and called "BEAR" by boys and later on was called WOKEY from Star Wars  (the hairy creature) I was at the best childrens hospital in the midwest/ a teaching hospital with roving gangs of residents that only could note the excessive hair like I was a growing plant. They were more interested in the excessive hair around the genital area growing like a Chea pet and dismissed the other stuff.  Teasing was no big deal and I bet they were laughing behind the doors also...sorry, went off on a little different road.

Eventually, the kids at school that were doing the teasing about my excessive hair realized that they werenít making me upset but rather angry and I made them uneasy. So they switched to calling me crazy and who cares about that? not me : )  It was the middle of the punk rock era and I was more interested in combat boots, plaid mini skirts and leather things with spikes. Arenít the GOTH kids of today so cute ? I had a little Mohawk back in the day too.  

I donít think that your daughter will blame you and that is really up to you actually because you will teach her about the real world and how things might or might not work out for the best. In my case the surgery was necessary because gender limbo wouldnít of been a good thing for me. In your daughters case, your family structure, the time period the surgery was done maybe it was necessary also. Geeez, I think that just recently that the ENDO CONSENSUS had recommended that it is OK to leave enlarged clitorises alone. You do have options when it comes to what doctors say and itís sad that didnít want to help you realize that you do have options but maybe they truly meant well. Itís a learning experience for them also because           " medicine isnít always right but it is forever changing " and that quote is from an intelligent,sweet, humble old man that meant well too.

There is a very good chance that things will be OK ! really you donít need the guilt because it isnít good for your health.

Aimee      

Aimee

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