Hi Aimee, 

You bring up some very important points. 

Every surgical case is so different and surgical outcomes vary as a result.  I think most people remember this and take these principles into account when they think about their child and listen to other people’s stories.                  

You wrote "One might of been a minor buff and paint and another a whole over haul : ) those with less virilization can wait the ten years and should in my opinion : )" when discussing how the level of virilization affects surgical outcome.   

If a child is moderately virilized at birth (absent labia minora, clitoromegaly, labia fusion, urogenital sinus, etc.) and waits to have surgery until 8 or 9, even with decent control--which we all know is tough when you are a child--androgens are at work and the child becomes more virilized, the genitals grow and change as the child develops, and the surgery becomes more complicated and the child is considered to be severely virilized. 

I guess the point I wanted to make in my initial posting is that it is exciting to see technology advance so that more people are having better, albeit not perfect, outcomes--even in difficult surgical situations. 

I had a "good outcome" in spite of serious surgery.  So did my sisters and several other people I’ve talked to that are within a year or two of my age, and we all had the surgical techniques that are used today, so I assume it’s possible for people having surgery with today’s best practices to have "good outcomes".      

Another challenge exists, however, because how we define a "good outcome" is subjective.  To me it means that sexual sensation is present enough to enjoy a satisfying sexual relationship, there isn’t significant urine leakage or pain, fertility isn’t complicated by the surgery, and the patient feels confident about her appearance.

I don’t know the percentage of young adult women who would say that they feel they had a good outcome from surgery, but I hope it is rising and that as technology and provider attitudes about CAH change, women will start to have less traumatic surgical experiences (though it is, of course, not possible to have a trauma-free surgery) .  I also hope that people who had both positive and negative experiences concerning their surgery will share with their surgeon how s/he could have helped them through the situation better so that they can provide better patient care in the future.

You have been incredibly honest about your surgical experience and CAH experience and I’m confident that the information you provide has helped so many parents, and probably even changed the way your physician treats his/her current CAH patients.  I value what you say and think that you are doing your part to change the way people think about CAH.      

My experience has been very different and I’ve not encountered the majority of the things you have had to go through.   Though I am also wary of people who do not think that living with CAH is hard, IT IS, I do not think that having CAH impacts most areas of my life and think that people who offer mostly positive information about CAH because that is true to their experience also have a lot to give and are not necessarily presenting a "canned" perspective of CAH.

Perspectives are different, just as people are different, and I’m glad this forum exists for us all to share experiences and take away information that is most helpful for us. 

Alison