I know that you aren’t that fond of me but I have gone through what your children have and I do find it scary that everyone goes on how mature their children are because the parents and doctors thought that about me as well and that really wasn’t me.

Like your children when I was born nobody knew externally what I was and I also for me lucky in that I was able to keep how I was born until age five so I knew and liked what I looked like.

 

Gender wasn’t a big deal or confusion for me but the part that destroy me was the slicing off of what I didn’t have trouble with and all the genital exams just  by the ped endo, the ped endo and one student, the ped endo and a group of students, the one that finnished me off was having to service a father along senoir resident that brought a newbie....yes and having the surgeon make anapperance and good girl slide down on my finger at age 10 ...so mature or forced into something becuase people didn’t like the way I looked? they ruined anything special or any personal boundaries by being forced into all this way to soon ...say no to doctors ....yeah do what the doctor says. My point is that if she has had to endure these genital exams then already she has connected some dots without you.

This ped endo, surgeon and students weren’t bad but were learning about CAH and ment well but really didn’t think to ask or even think that hey really would of been better to leave this one alone.

Also wanted to share a story that happened last year but had happend before also happened before throughout the years. If you don’t want to tell your kid how they were born then it’s cool and your kid but hope they never get into this situation and no this nurse wasn’t bad terrible or whatever ....I went to the second ER for my gall bladder and the Er was excellent and upstairs I went at 3am - the floor nurse came in and was doing my history - I went to tell her upon being asked that I take 25mgs hydrocortiosne and have CAH which had her perk up and get a smile on her face responding what are the symptoms? I had to endure a flippin pow wow about this when I just wanted the hydro and synthroid fro the thyroid.

I who had been throwing up and had low blood sugar during the day brought up the adrenal crisis which wasn’t any interest to her because she responded "you were born with a vagina and penis" and then she stuck her finger out and shock it back and forth ....so I went on to bring up the prader scale/ most have just enlarged clitoreses  which ment nothing to her and she kept sticking her finger out shaking it .....I then went yes and a thought actually did flicker about you parents that have kids that really don’t know how they were actually born.

I then again went yes......nope, they didn’t know externally what gender I was and they did find that I had only female chromosones and sex organs with no testes again I tried to explain the prader scale because what my wacky adrenal gland actually created looked more like a deflated ballon or a long skin tag with a hole at the end and not any penis that I’ve ever had the pleassure of seeing...she then asked me what the skin of it was like and keep in mind I had been in the ER since 2 pm and this was now 3 am ....she then went on to bring up babies that had Des exposure in the 60’s which I gather was also female babies that externally looked male ... I really was just ill from the gall bladder and was greatful that I was given a shot of solu- medrol in the ER and also had the number to my Endo because the nurse when I asked her about hydro for the rest of the night mumble something about me not having an IV and just wasn’t going to mess with that but went on talking with gee and asked if I also had erections and then pointing her finger straight up .....I went on to go ..yeah guess so I was five and ...ummm don’t all genital areas inlarge if someone gets excited for whatever reason....sensation. This nurse wasn’t bad and then switched to talking again about Des babies and that she had worked in Oby/gyn and said "had seen it all" as she left. This was/is a good nurse and I wouldn’t go to any other place if I could help it but I would love one day for CAH to be thought of for the dangerous adrenal part and the interchange with the rest of the body of our adrenal gland and to make one part of the condition  still a curiosity after it’s been studied since 1862 really is something that I hope would disolve. It’s an adrenal gland thing......yawn and my thyroid condition actually makes me feel physically worse ...crazy : P at times/

 

 I was feeling really sick from my gall bladder and really didn’t need all that but this is the type of things that do happen ...I did bring up that in the end this is an adrenal gland condition and reflected in my head that whew I was given that shot of solu medrol ...so I should be Ok and if not? I had dug in my purse and had the endo’s emergency number - I thought about telling the endo this story when he stopped by the next day but he went " I think you are in the right hospital" ...I looked into those hazel eyes and went ’’yeah" because he was right and the nurse was just  bringing what she knew about CAH for the time period of her training. The same nurse came back the next day with the nurse that was mine for that da and I wasn’t even her patient that night - she wanted to rub my back and started to do that without my permission which only made me irritated because this was yet another person touching me without my permission and I was flipping because I had just started a new job and didn’t want to be in the hospital. The student nurses were also spending to much time with me and I was fine with them learning how to change the antibotics in the IV but threw the one out when she pulled my covers down- not telling me  and stuck her head right over the clitorectomy and put her hand in a wash cloth on it = she thought she could get a good look ...I was mobile and alert but yet she wanted to give me a "bath " going right for that area - I kicked her out and noted that my roommate never got a "bath" even though she needed help out of bed unlike me.   I have more stories but I would hope that if more through info about CAH is presented in medical training then experiences like mine will be less and less.

I know that the majority of people on this board don’t like me but yes ...you be the ones to tell your kids about CAH amd not anyone else.

aimee