CAH patient about to have surgery

[TracyL]

Hi,

I am a 27 year old female with CAH (saltwasting) I had the clitoralplasty surgery at birth, and again at age 7.. I had no choice obviously in either case. I suffered no ill effects from either surgery. The doctors were never able to perform the vaginal corrective surgery, for various reasons, one of which was the insurance company wouldn't cover 'sex changes - typical HMO.

My current doctor now will support the need for this surgery, at my request.

Is there any advice for someone going thru this at my age? And how do I ensure (other than threat of legal action) that they don't try to 'correct' my clitoris again?

[Betsy]

Hi Tracy,

Welcome to Bodies. You'll find that several people here have CAH, but we are truly a mosaic of many different people.

I also have salt-wasting CAH.

On the clitoris question, I would really make sure that your surgeon knows that doing anything in that area would make you really, really angry. You need to make sure that you make that clear, with no question whatsoever. We've heard from people who this has happened to, and needless to say they were quite upset by it. Unfortunately, it sometimes takes so long for it to set in what was done, that by the time they are angry, the statute of limitations has come and gone.

Betsy

[Sunshine1]

Dear TracyL:


Don't know why your HMO would consider any vaginoplasty for the birth defect of CAH in the realm of sex change operations due to the fact that females with CAH only have female chromosomes. Vaginoplasties for CAH are done because there is a viable female under the ambiguity or external virilization.

My HMO never had any trouble with approving any vaginoplasty or the clitoridectomy in 1975 for that matter . The first vaginoplasty was done to allow for menstral flow and the second one at 21 was done because of stenosis, a narrow vaginal cannel.

I never had the problem of surgeons trying to do any corrective surgery on my "clitoris" because there wasn't anything left to correct. Just to be on the safe side if I were you, I would have the surgical service, and/or your lawyer draft up a contract of what is and is not to be done to you and the consequences of the afore mentioned actions. Or, you can tell the surgeons what you don't want them to do and trust that they will listen to you.


I was born on the east side of Detroit, MI. You don't know anyone with the last name of GOETHALS by any chance ?

Good Luck,

Aimee

[TracyL]

Originally posted by Sunshine1
[B]Dear TracyL:


Don't know why your HMO would consider any vaginoplasty for the birth defect of CAH in the realm of sex change operations due to the fact that females with CAH only have female chromosomes. Vaginoplasties for CAH are done because there is a viable female under the ambiguity or external virilization.

Yeah, you'd think.. this particular HMO and Doctor also told me I was faking it when I had cancer of the jaw.. I had to pay for my own biopsy.


I never had the problem of surgeons trying to do any corrective surgery on my "clitoris" because there wasn't anything left to correct. Just to be on the safe side if I were you, I would have the surgical service, and/or your lawyer draft up a contract of what is and is not to be done to you and the consequences of the afore mentioned actions. Or, you can tell the surgeons what you don't want them to do and trust that they will listen to you.

You never know how doctors are.. I just want to protect myself.

I was born on the east side of Detroit, MI. You don't know anyone with the last name of GOETHALS by any chance ?


No Sorry.. I've lived over here most of my life though..

[TracyL]

Originally posted by Betsy
Hi Tracy,

Welcome to Bodies. You'll find that several people here have CAH, but we are truly a mosaic of many different people.

I also have salt-wasting CAH.

On the clitoris question, I would really make sure that your surgeon knows that doing anything in that area would make you really, really angry. You need to make sure that you make that clear, with no question whatsoever. We've heard from people who this has happened to, and needless to say they were quite upset by it. Unfortunately, it sometimes takes so long for it to set in what was done, that by the time they are angry, the statute of limitations has come and gone.

Betsy

Thanks for the welcome. This seems like a nice and friendly place.

I am going to make sure the surgeon really knows.. At least I am no longer a minor.. I didn't have a voice the last time they did that surgery. My biggest concern is that they do it, despite my wishes, for my own 'good'


THanks for the advice.

[connie]

Hi
My name is Connie (Long Island, NY) and I also have salt wasting CAH - I was 5 years old when my second surgery was done - the first being before I left the hospital (Clitorectomy) and the second was to widen the vaginal canal - both surgeries done before I had a choice - I agree about some written contract to be signed before surgery to ensure your wishes - Good Luck!
Connie