Dear Annalise,

Wanted to add that age 11 after the surgeon came to see what a good job he did and thought having me slide down on his finger to see if his surgery was going to be Ok for period flow was less of a trauma after all of course he was the good doctor and to him sliding down on his finger was supposed to be less traumatic in his mind and I give him credit for saying that years later But no 11 year old should have to do something like that ever.

I was 11 and wasn’t in pain and again don’t make me with an 11 year olds mind don’t ever subject me to something that even adult women find uncomfortable. Childhood and the teen years were messed up from this and yes they all meant well but it was medical rape to me.

The man truely from the bottom of his heart had my best intentions and my Mom was very good with explaining what and why this was done BUT again I was a child and they forced me into an adult situation because they couldn’t stand the genitals thaty I was born with. Or they thought that surgically altering my genitals was in my best interest and it was a judgement call.

 

At 11 I thought about killing myself after the surgeon came in years later to check his work - just a man in yellow tie with blue dots .... Go Blue? Slide down on my finger ...good girl or the Endo throughing up the gown for the new students or having to service the older students men or women when they came in the room alone and then have them watch as the endo did it over or I was allowed to escape to get the blood work done and like you I felt molested and would of drawn my own blood to get out of one of the best major medical centers in the country. I sometimes wish that I would of been born 15 years earlier and just allowed to be me - munus and surgery or hydrocortisone.

This was the best hospital in the mid- west  and they did mean well and are the best in the country. They were learning about CAH and thought I was an agreeable child but I thought they were monsters and then my mother who did her best to prepare me but the reality is that I should of been left completely alone.

Years later, I got a letter of apology from the ped -endo on the hospital letter head and the surgeon stated medicine isn’t always right.  I think that letter was the most classiest thing in the world and the endo and surgeon took everything I said.  The endo thought of this as a learning experience as well which really impressed me and that is what medicine is : ) a learning experince and also dysfunctional as well. 

They charted that pubic hair that started after I was 11 like a chia pet and I remeber the shock on the nameless resident when he saw that I shaved it off. He asked who shaved off the hair and I stated I did with the female nurse looking on in the background - I was a pre-teen that was dealing with things that I never should of but other people went through things as well. We can use those experinces to help others or wallow, die  or have a ball self - destructing which was my thing. 

It comes down to this that medical conditions just suck and medicine is more humble now. I think because people did speak up from my generation and yours that medicine learned and is listening. Each person with CAH or any medical condition is so different.

Annalise, You can be whatever you want and make a difference in peoples or animals lives. It isn’t to late for you like me.

Were you at a teaching hospital as well?

Where do you see yourself in five years?

Where do you see CAH in five years?

I’m glad that you wrote as well and although we aren’t the same on some things ; ) we are on many others. Something that you might find interesting is the study of Cognitive Developement of Children and then through in what we with CAH had to deal with.

I think if what they did to me was when I was a little bit older ...say 16 then I might of been able to mentally handle it but that isn’t how CAH works.

Dear Jwood Sorry for High jacking your thread and nothing is written in stone .....follow your gut and things will work out.

Bye,

aimee