My Mom had a good attitude and I really don’t get it why parents think that since they have a good attitude everything then people with CAH wouldn’t have the feelings that they do .People with cancer or diabetes are allowed to  REALLY express but us? it seems like it is discouraged unless it’s absoutely perfect  . This isn’t about the parents but how it feels to have a condition. I was measured with a ruler by a resident when I was 11 that froze upon half-way flipping up my training bra and like the good little mid-western girl that I was..it was me that made him more comfortable and flipped up the rest of the bra for him. I can still remember him down to his glasses, black hair, red tie and breathing and how he tried in a nice way to put the bra back down when he was done. It’s a mentally hard experience to go through having a man really only 13 years older than you flipping up your bra as some nurse and your mother look on ...you want them not to let him do that to you BUT they are just as interested and want him to do that to you .. they are giving him permission after the ordeal the endo comes in with a group and flips up you training bra with one finger and does the exam again..you remember that bra the one that was so special. Here you are glueing macaroni onto a piece of construction paper out in the waiting room and them you are and eight year old in an exam room in a gown and suprise a group comes in with the endo and before you know it ..they are all smiles and the gown is pulled up and  they all get to take their peeks - You tell me how an eight year old processes that? Yes we have a condition but we a people first and conditions do have an affect on people. CAH isn’t a bad condition to have compared to others but the treatment at times is a lot for a kid to process ...just to validate what the child really may be feeling is priceless.  There was times when one resident or two would come in first and I have ..well I was a pretty tolerant kid to deal with all this ...even as I child I had an instinct that it was good they were learning about CAH but that doesn’t take away the NATURAL feelings of having your boundaries violated every time you went to the hospital Endo Clinic. It was hard to relate to other girls because they seemed so sweet, trusting, innocent and after the exams I didn’t feel like that anymore. I even shaved the area because an older friend told me her mother did that. I still remember the look on the med residents face, I must of messed up their graphing. Having your genitals examed so much gives you the feeling that you are only good for sex..getting primed for sex and this area is judged and judged again for suitablity.

I talk with people that have CAH off the board and I doubt anyone would have the nerve to really tell parents this but here it goes ...When it comes to sex and since this is a family board Yes, with the person that you are married to but it takes awhile before it feels like a loving expression and not a genital exam. You freeze up like during an exam and it takes a really good partner to bear with you until you get past that and we do sooner later. It makes me see red when I read from researchers that sex is supposed to be a trauma for people with CAH w/ no mention of the genital exams. Sex isn’t a trama but genital exams aren’t a picknick.

 

Dear Hope ....Hey : ) I’ve gone on and on about this because I’ve been on the recieving end and I like your concern for your sons feelings because you get it for your family situation.Kids can do anything when their feeling about this are addressed. What makes things better at least for me is when a doctor takes a little time to talk with me about CAH or whatever before doing any type of exam and then talks just a little afterwards. I understand time constraints but I’ve felt better with some sort of conversation. I remember as a 12 year old trying to bring up conversation about horses with the med resident as he was pulling apart the vaginal area. My conversation was responded to with silence and only if he had just played along ..humored me then it would off helped to be seen as a little human being with a character instead of a thing that needed to be checked. The Ped endo never could take the time to spend relating to me as the child I was and as an Adult, I completely understand and respect this because he was in charge of tons of medical residents that used me as a teaching tool. I had the best care for the time period and I never went into percocious puberty and the blood tests were always super but I never felt like my body was mine. I still refer to the surgical area as Dr. ___ handy work but it just the nature of having a condition because that surgeon and the ped endo did their best just like your kid’s endo is. Maybe? it would make it better if you could talk to the endo in a way that brings him out as a person and that way ...maybe the exams would be easier on you? when he has to do it .

take care : ) I hope some of my babble helps in some way.