It is good for me (and I think all concerned) to hear from someone who has grown up with the issue(s) as a part of their own experience. 

It is quite clear that just a surgery to force a persons body to look normal on the outside will by no means fix all problems.  It seems that there is some feeling that people think it should all be left alone and accepted as part of the individual.  That is something I need to give some thought to.

I want to know if you feel that your CAH was as well supressed during your growth and development as is reasonably expected with regular steroid.  I have a theory that the parents of infants and children with CAH are led into an idealistic belief that if they medicate properly and follow all docs suggestions that the effect of excess androgens and side effects of medication won’t exist in the development of their child.  When you mention the effect of androgens on other parts of you than just the physical appearance I feel I (my daughters experience) echos that.  I was the medicating parent and feel that I went through a disolusionment and then finally an acceptance which may have helped me plan and cope if I was not misled in the beginning. 

Part of my mission here is to tell others what I wish I knew.  Part of it is to see if what I think now is really true... or is it as some doctors kept saying to me, "Well, the blood tests are right on so she must just be one of those kids that has lots of hair and dark skin."  or " These are only maintenance doses of steroid, his changed mood is not a result of the increased prednisone and weight gain is hereditary and normal"  If what you have experienced is typical of a CAH girl then I would like to have been aware of that at the outset with my daughter.  If she may be likely to experience feeling different than other women and so forth (completely apart from physical effects) then I would consider it a tool to have that knowledge in advance so that I could be aware of what she may be experiencing and at the right time could let her have the knowlege too.