I am almost seeing blue on that cah.org board seeing someone else "planning' surgery" and am having a tough time biting my tongue. Sorry for the response to myself, but I am trying to maintain my civility.

If you would like to see what I am talking about (or participate)

Congenital Adrenal Hyperplasia

and

Congenital Adrenal Hyperplasia controversy (closet) board

Have fun,

Betsy

Hi Betsy,

I tried for quite a while to post a message there, but their very unfriendly interface refused to allow me to post.

Selfish parents who are really only interested in pleasing society, will listen to the arbitrators of arbitrary normalcy, the doctors. Those who care about their children will listen to them, or those who were once in the position their children are in now, too young to speak for themselves. The former will risk their child's welfare and convince themselves they really aren't, while the later will consider what genital surgery may do to their child, from their perspective.

It seems it is impossible to reason with the former, and the later will seek us out, and listen.

Just follow the money people! Doctors get paid for performing surgery, and frightened parents are easy targets, ripe for convincing their expensive services are essential. If they keep pressuring you to allow them to do surgery. Just tell them you are broke and have no insurance, and suddenly surgery RIGHT NOW, is not so necessary. Just ask the MANY parents who did not have insurance and were broke, who had to watch their children DIE, because they could not afford surgery that was really was necessary!

Sorry I was unable to post there. I tried, and I will try again if you know what went wrong. Feel free to re-post this there if you wish.

Best to you. :D

Natasha

she was just diagnosed with non-salt wasting CAH. She has a large clitoris and her labia are fused.

I am not interested in "fixing" her clitoris at all. I do see reason to widen her vaginal opening.

I'm still absorbing this whole issue and feel very confused. Every single dr I have spoken to just assumes we will want to schedule a "clitoral recession" ASAP. This is very overwhelming. Is there any non-cosmetic reason to alter her clitoris? I really don't understand!

Hi,

In very rare instances, there sometimes are UTI issues going on. It doesn't sound that your daughter is affected by them because they can be life-threatening. In those cases, whatever is causing the UTI issues can be corrected without surgically altering the clitoris, but those parameters need to be brought up by the parents because the doctor won't do it. Too often, we hear from parents that they thought their little one was only have the uretha repositioned to correct the UTI problem and then learn that the surgeon "decided" more should be done without consulting the parent. Make sure you are vigilant when/if your daughter has a vaginoplasty because it happens then too.

Ask the pushy doctors if they are up on the research, and if they are aware of the gobs of research indicating it is better to wait until your daughter is old enough to participate in the decision. There are several recent research papers on the website under the research area. Ask what the longterm outlook is, and then ask for the studies that prove their answers. Ask if they are in contact with their patients once they reach adulthood and sexual maturity (if there is such a thing).

Betsy

__________________
Until you've lost your reputation, you never realize what a burden it was or what freedom really is. --Margaret Mitchell

Natasha, it sounds like you & me have pretty much the same opinion of the medical profession.

Andi