Jess,

It’s O.K.  really...you wrote about the controversy of surgeries feeling better about not waiting in the first post and how everything looked good and not being able to tell any surgery was done but you were actually talking about UTI’s?( internal).

Never had any UTI’s myself and my surgery was considered the classical social emergency ( You can’t let a five year old girl go to school with THAT !!! ) the experts told my parents something to the effect that I needed the surgeries to fit in socially. I was the one later that reasoned surgery was necessary for period blood to go through it but the main concern of the doctors was that she couldn’t have anything bigger than us : ) REALITY is fixing what the adrenal gland did : )

"did not recommend dilations at this time" ? waiting for the surgical site to heal before it starts? or wait until she is older.  Someday? they will say it is obsolete. Maybe will not be necessary? each case is different.

Did you get the woman part of my posts? I’ve taked with five people that have CAH and they all say the same thing with not being able to relate to women and yes two of them have children. I don’t know ....I hope that this comes across in my writing but if you could just somehow make it OK give her the extra support that it’s OK to connect with other women ...that they are OK  then I’ve written something about CAH thats abstract and needs to be broken. maybe it’s feeling less because of the gential exam exposure and putting on a bubbly face because parents, doctors want ..need you to look a certain way ...ha I had one Endo a couple of years ago tell me surgery is done because born looking less than good is a trauma to the parents and then he tried to add the child  ..hummm I’m lucky I didn’t get the cops called on me. I liked the way I was born and was no urinary track infection but surgery was necessary by five.  I’ll always had some incotenence after the surgery but would anyone blame me for not letting them touch me again? I had to go under the knife then because unlucky me did idenify pretty much with my female chromosomes- wasn’t bathed in enough androgens ..darn and with perfectly fine ovaries and uterus-They circa. 1975 thought sharpening the scapels and wacking off/ slicing me open was in my best interest and statistically wise it made the most sense. The surgery was understandable but all the taking a peek/ poking around. Screwed me up for good. Glue Macharoni to cardboard, have some patient buddy advocate ( idiot psych student) talk to you like a puppy in the waiting room ...the friendly adult warming you up for the medical gauntlet.

 

present day:         

Dr. Rink, Dr. Baskin, and Dr. Poppas are trying to help- just like the doctors back then and by the way Dr. Poppas from his pictures looks really nice to look at  ...lol women with CAH are more visual ...I’ll go to a cares conference but only to see that one in person  lol.

People with any medical conditions deal with so much but you make the most of it in the time period that you are living in.

It’s good that you are happy and parents that have surgery for their kid ----For whatever reason shouldn’t have to preface ( right word? ) about controversy shoooot you’all want controversy  ???? Look at the  wacky BS about the different thyroid drugs Synthroid ? Amour sp? it’s a trip.

Good Luck,

Aimee