I've been seeing a urologist for the last year and change, and she's the one who diagnosed my condition. But at time goes on, I'm starting to realize that she may not have the right picture. Part of me is wondering if she's missing something.

So if I'm trying to find another doctor, maybe an endo to get a better picture what my body is really doing, how can I tell if I have found a good one? Any ideas or tips?

TIA,
Glenn

That's a tough one Glenn. Both Dandara and I have a philosophy that we build our own experts. The reality is, we all tend to know more about our own conditions than they do. I have found good ones by simply asking in public message forums like this one.

Betsy

" build your own Endo" ? I like that Betsy,I was thinking literally, like you would build one in your own basement (giggle) but then it occured to me that of course you mean figuratively and you meant that by the info you give them, you thus make a better Endo.
With the one Endo that I had when I was 25, it was me that brought up the idea of the change of prednisone dose. He told me that my levels were SUPER !! I made him a deal, I told him lets lower the dose of pred to see if my levels were still super ! I couldn't stand the side effects I was having puffy face, nerves, snapping at people plus I was worried about the pred sucking the calcium out of my body. I was also the one that had to bring up the idea of a bone density test. Low and behold the blood tests came back super with the lower amount of pred. I also felt better physically and mentally. If I hadn't spoke up it would of been business as usual. This is just one doctor, I could go on about others.
I think at times someone with CAH needs more meds ( most likely at puberty) and at other times less. In my late teens I had one Endo try to stop the virilization that was already there, by increasing my med way too much after the fact. I figured out on my own that this only made things worse. Later, another Endo told me that once the virilization starts you can't stop it. Way back when I was 11 to 13 (puberty) The endo clinic at the best childrens hospital in the mid-west wrote in their medical reports that the amount of pred I was on was "suitable". It was worth the wait to get a copy of my medical records. I think they were more interested in inspecting their surgeries on me than even considering the prednisone dose.

They have a safety net they tell you cortisones are hard to regulate, it's like a thermostat it's hard to get it just right and I think most of the Endos don't even care to take the time to try to get the exact levels right for EACH person with CAH. Heck, I think whatever I'd build in the basement would be better than the very last Endo that I just fired (hehehe).

To be serious, you want to find someone that actually cares and is not rushing through you to get to their diabetic patients. What about that Dr. New from NYC ? They say she is a leader in the field I think she might deal w/ adults too, People on the LOCAH board have seen her also. One parent said once that her daughters Endo considers what he does a craft.

Good luck, none of this is perfect. I know there is one out there, I just haven't found her/him. I'm most likely jaded against these people anyway, I was nothing but a lab rat to them as residents. It's good to vent (lol).


Aimee

First, start with a body, and then place the genitals on their foreheads. Next, grab the nearest sharp tool and surgically mold the genitals to what you think they might want. Don't bother to ask them what they want, for it would ruin the surprise. When they ask what you are doing, don't tell them anything other than everything is okay and that it's normal. Be sure to leave a good bit of scar tissue here and there. Then, send them out into the world all the while insisting everything is normal. Whenever you get the opportunity, you should also gather all your friends around for a quick little look-see. Don't forget to remind the endo that everything is just fine. If they ask questions, deflect or lie to them. Soon, if everything goes right, they'll be doing their thing oblivious to what has occured

Betsy

I think some doctors are listening now, a very small percentage. They know what was done is wrong and they realize not everyone does have typical genitals and they are wrong to manipulate the patient so much.

The surgeon that did my third surgery when I was 21 told me with is back to me that they didn't do clitoridectomies any more. He couldn't even face me and say that.

When I was in the hospital a couple of months ago. Each specialist that came to see me asked the same quetions over "Did you have surgery" I told them about the vaginoplasty and the clitoridectomy and I looked them all in the eye when I said it. One doctor started to repeat what I said and he started to say," Vaginoplasty then clitorid....." He mumbled and got uncomfortable and said " genital surgeries instead. He knew that archaic surgery was cruel. That one act of him being uncomfortable about saying clitoridectomy showed me that he is a caring doctor.

Another time outside of a hospital I was talking with a GP. I was telling him how I liked my ambiguous genitals and the surgery screwed things up not only physically but also at times mentally along the lines of self esteem. I've worked hard on the self esteem part. It's hard at times to live in a society that must butcher the most private part of your body to accept you. Unlike my former Endo that didn't believe me when I said this and started quoting text books instead of listening to me the actual patient. This GP turned pink for a second and then shook his head in agreement with me.

I know there is a surgeon that made a opening to a fused vagina but left the enlarged clitoris alone. I do see small glimmers of hope out there. Now that human being can decided later if SHE wants to have any more surgery. The surgeon did minimal invasion, what an improvement over the past.

Glenn, you will find the right doctor. It's just going to be a matter of trial and error. You will know when it is right because you can feel it. I've been to many of the "right" doctors for different medical issues. I'm confident there is a good Endo out there somewhere also.

Good Luck,

Aimee Morgan

Betsy; I think Men In Black II (MIIB) beat you to it. I remember reading one web site which was terribly upset because one of the aliens appears to have a scrotum hanging from his chin!

Seriously though, I realize it's a trial and error (too many error!) process to find a good doctor. Maybe we should start a database of feedback on various doctors - rate them as clueless, partially clueful, or cool?! After all, if eBay can track ratings for buyers and sellers, why can't we do it as consumers of doctors' services?

Glenn

That is actually a goal of Bodies Like Ours to do this. We have a very limited number in our files thus far, but it does need to to grow some. We haven't had the resources yet to do it properly though because we have been so busy just getting up and going. Eventually, I would like to build a database that is interactive for people looking for a new doctor.

I did start a new thread where people can let us know who they like and who they don't like. Feel free to contribute your experiences by name.

Betsy