Nina

[A.P.Morgan]

Nina:

When I wrote "all of this happened in the early 90's, what a stormy time of my life"I was refering to the whole post. Sorry if that didn't come across to you.

As for any of this getting resolved, well no........ it doesn't quite happen like that ( at least not for me) but the counseling that I had in the 90's gave me positive coping skills and a more rational way of dealing with the same situations that before would of sent me into hysterics. Rational behavior modification saved my life. It doesn't happen overnight but it does work

I consider a clitoridectomy an act of violence against a child that looked different. The surgeon thought he was being helpful. The real answer is somewhere inbetween.

It used to actual physically hurt to have a doctor put his/her hands on me. Now, I tell them they have to ask my permission to touch me and they must tell me before hand any move they are going to make, this manuver is such a small thing but it puts the power where it belongs back in my hands. I'm the one that manipulates/controls the exam not them. All this doesn't make up for or RESOLVE the external and internal genital exams that I was subjected to by gangs of residents in my childhood and teen age visits to the Endo clinic but it's a start.

I was resently in the hospital and in the ER, I had a gang of residents suddenly become very interested in me. CAH ....ummmmm they cackled among each other "the case of the day" They had to scatter because the nurse showed them that I had signed a paper that none of those fuckers could touch me. I DON'T GET ANY MONEY FROM IT ....THEY NEVER MADE MY LIFE BETTER ....WHY SHOULD I TEACH THEM !

Aimee

[connie]

Dear Aimee
Sure sounds like you went thru what I went thru
and I must say that I feel the same way as you do now
Always felt as if I was a spectacle on the examanating table
I can surely relate
Connie

[Nina Williams]

Dear Aimee and Connie,

Sorry it's taken me some time to reply to your posts; I've been away from the computer.
I don't have a good reason why you should want to give anything at all to physicians after your experiences. My reason for wanting to do this is that I don't want anyone to ever have the kind of experience you describe again, and as long as physicians have the techniques and the social permission to do these surgeries (and conduct this public examinations or take photographs or lie about their procedures), I don't see how it's going to change. One of the things I am learning here is that figuring out how to take the best care of yourself emotionally and physically after this medical trauma is an ongoing battle, and my interest in educating doctors can come across as a lack of empathy for that much more important fight. I apologize for that.

Nina

[Aimee]

Nina:

I'm not against any surgeries, it's just my belief that it is better if the person who they want to slice can have a say in the matter.

Surgery for someone with an enlarged clitoris can wait until that person is older to decide.

It's a harder choice for someone that has a daughter with a fused labia and a clitoris that is so virlized that she voids out of it. I can't speak for the other intersexed conditions but a girl with CAH only has female sex organs and chromosomes. You can't fault the parents for giving the surgery a try. Personally, I was ok with my ambiguous genitals, it was a wanna-be penis. This is just the luck of the draw, it's what happens when you lack the ability to make cortisone that the androgens do what they naturally do in a body.

As for those pictures, yes my picture is in some medical book somewhere along with other birth defects and I hope some resident learned something.

Those genital exams were a waste of my time and I was just a "lab rat" for them to chart my progress. "Wow...she has lots of hair down there !" The residents would just chart it and then the head Endo would give me more Prednisone. The hair still grew and I just got fat and ended up on the short side. I've told you about the gang exams, I've got the same stories about exams with just single residents on the room. Every 10 year old needs a resident to pull apart their vagina with is his two hands, it does wonders for the psyche or how about having a resident put his finger inside you when you are 13 ? That one I'm suspect about but I have to give him the benefit of the dout that it was really something that he was supposed to be doing. How about having your breast measured when you are 15 with some sort of protractor/ruler and the resident can't read the ruler that is attached to it because the numbers are to small, so he has to have is face almost right on your breast so he can see the numbers.

The doctors never lied to my parents, they( my parents) read books on the subject by the leading author of that time period. My mother was told that the nerves were going to be cut. They all thought this was better than what I was born with. I don't blame them or the surgeon.

There comes a time when you realize that people do the best that they can. They might not always say the right thing or do the right thing. I had a perodontist tell me," Open wide and think impure thoughts or pure thought, what ever works for you." I hope he wanted me to feel comfortable but he did the opposite by making that little comment. I went to a doctor for another medical issue that I was dealing with. Upon hearing that I was having my menstraul cycle, he looked at me suprised and said, " I didn't know that someone with CAH can have children." Yep" I said," and some of us even have three kids." I had to explain to him that I only had female chromosomes, a uterus, and ovaries. I went on to explain the ambiguity was only on the outside and by the way, I told him that I like my ambiguous genitals and there was nothing wrong with them. The poor guy got flustered, turned a shade of pink
and said,"OK" I don't mind talking to doctors in that situation. I'm just not fond of residents, here you are in need of help and they are going CAH? Wow, neat that's rare. I'm sorry, I want someone that knows what they are doing to treat me. I remember once, I was in another hospital for a procedure and the student nurse was taking my history,( the regular nurse was in the background) we got to the part that asked about any surgeries. I told her that it didn't relate to what I was having done. She said," Oh yes, you must tell me." So, I went clitoridectomy ... vagi.. "Clitoridectomy ? what's that ?" she said. Ectomy is removal, clitoris ----removal of the clitoris or removal of the I don't know what the heck it is for more abiguous girls like me ( lol ) I didn't want to go there with her. Basically the whole situation made me giggle, I'm the patient in my birthday suit under a sheet and once again having to explain CAH and the results. So I continued, vaginoplasty and then the regular nurse piped up, "That's not like a nose job is it" I couldn't stop laughing at this point. It's funny in a dry sense of humor sort of way . You feel really helpless when they don't even know what CAH is. I was in another hospital and the nurse said," CAH ? Isn't that like Addision's Disease ?" I was so glad she was my nurse and knew that CAH was similiar to Addision's. I never got to thank her for the graham crackers, feel bad about that one. I was in the same hospital ten years before having the second vaginaplasty, a nurse came in and asked, " Why did I have this done?" You would think they would ask the surgeon this question but I explained to her that some people are born with narrow vaginal canals, I was going to go into more detail but that satisfied her curiosity and I never saw her again.

I had a resident in charge of my case think that increasing the prednisone to 20mgs/day would solve some problems of the CAH. I moved away before I could tell her that 20mgs/day of prednisone is rather destructive in its own right . I guess dosing wasn't her strengh. I cut the pred on my own to 10mgs and lost 75 ponds in the process. When I went to the new Endo to get the levels checked everything was fine. With the Endo's supervision we droped the pred down to 7.5 , the levels were fine also. With the Endo's permission I've droped the pred down to 5mgs/day and I feel great . It will be interesting to see what the blood test results are.

Even a beautiful vase has flaws,

Aimee