My daughter is almost 20 and has had several surgical procedures due to CAH. The first was done at Cornell Medical Center, in Manhattan, when she was 11 months old. Her urethra opened into her vagina, so that had to be extended, plus she had a clitoral recission (the clitoris was tucked into the body and stitched into place). The recission failed, so she had another procedure at Columbia Babies Hospital, also in Manhattan (we switched doctors when the surgeon proposed "cutting the clitoris, and we'll just have to hope that the nerves fuse back together." I am glad to say he is no longer practicing medicine). This time, excess clitoral tissue was removed and nerves were left alone.
Over the next eight years, she had several vaginioplasties, and lasting bladder problems, which didn't resolve until her middle teen years. She says she does have feeling in the labia-clitoral area, but she is not sexually active ( "mom, I don't even have a boy-friend yet!") and has not experienced and orgasm, so she doesn't know if she "works properly" as of yet. Her last surgery was at eight years old, but she had an umbilical hernia repaired at the same time, so that overshadowed anything to do with CAH! All she remembers is not being able to laugh because her belly hurt too much.
She says that she would have hated surgery involving genitalia if she were any older, and does not think she would have liked it if we left the decision up to her, since, even if she did need corrections, she wouldn't do it. Still, she never had to self dialate and uses tampons without any problems.
As a parent looking back, I would have questioned the surgeons much more harshly now than I did before. There is so much more information out there that is accessible now, knowledge that we only could get from the doctors we knew back then. Every procedure that your daughter has can cause nerve damage. I think too many surgeons like to add "CAH patient" to their resume, and do not always put the patient first. Make sure she absolutely needs the procedure!
When my daughter started Cortef, her clitoris reduced in size, anyway. Even girls without CAH are often born with fused labia, which often opens by itself. Sometimes, an estrogen cream will efface the skin, again opening the labia. A slightly enlarged clitoris will not even be apparent when the baby is an adult. If the enlargement is great, MAKE SURE THAT THE NERVE BUNDLE IS LEFT INTACT AND NOT CUT IN ANY WAY! This is one of the few times that I would agree with architect Mies Van der Rohe that "less is more." Do only what you absolutely have to do, and no more.
Good Luck,
EAG
