I agree with Wendy-Lee.  My daughter was mildly virilized and had never had surgery.  After starting on the meds (and she was 3 before she got them) the virilization didn’t progress any further.  The kind of "grew into" things.  Anyway, if there is not abnormality that requires surgery, you will find it is pretty much an optional thing. 

You don’t need to tell people anything other than she has an adrenal insufficiency.  If they are her caregivers, they need to know what to do if she is sick or injured.  If they ask how she was diagnosed - it was through newborn screening.

We have been dealing with CAH for 13 years now and after the initial shock of having a disorder, learning all we could about it, adjusting to giving meds, it turns out to be no big deal in our lives.  Our daughter does all the things all the other kids do.  Today she took 6 ribons in a horse show and had one not too pretty fall after a jump.  She only sustained bruises - on her body and to her pride.  What I am trying to say is that it gets easier, gets to be second nature.  Good luck with your daughter.