Dear Katrina-
We all have our opinions.
You speak for your child as you are supposed to. My parents spoke for me at that age to and were saddened that later on I spoke of those exams as they thought .....well you seemed ok. Things do come out later with CAH and I'm not the only person that has spoke or written about how those exams made them feel.
I will stop writing to you and will never respond to your posts as I don't believe you are understanding the meaning of what I'm writing but rather intent on minimizing my experience.
I don't think given the circumstances that you can grasp what I'm writing. There are things that I don't comprehend either and I know well enough that is just life. If I had had some need for them to get in there from an accident like your experience then I wouldn't feel like me either.
I do find that you are really insensitive to someone with CAH experience with genital exams and I'm not the only one with CAH (men or women) that writes or who I talk with that felt or feels violated about those exams. These feeling don't come out until a little latter and/or they are expressed different ways. For example - It takes a long time for sex to feel like sex and not a genital exam.
If you could see this from one person with CAH view .. then you cold grasp at least something from what I post but I feel from the way you write that it's just put downs and minimizing.
All these people were intent on forcing my genitals into something else but my mind that also was awash in excessive androgens identifies with what was surgically altered. My mind was wired to the genitals that I was born with but those were taken away with the best intentions and I struggle with feeling like I belong to any gender.
I just answered Anon's post as she put it out to an open message board based on my experience with the subject and other people gave what experience they knew. I didn't get upset that they wrote different things.
As I wrote in another thread that it does have a disclaimer on this board about in the end one must always follow medical advice. If a parent just follows an opinion on any message board without the Endo then should that person even have children?
Yeah, I had experience with the clotting but it was more like big blood mucus goo at the time and had the feel of jello ...huge size of a gall bladder, liver or chicken cutlet and the one splatter on the wall paper in the bathroom of a friend of my moms but that wall paper was stain resistant sota. I asked the endo and she was "Oh just mucus" stuff passed out like that and it was three years later I went for vaginal stenosis surgery at my insistence .
The urologist never brought up anything either and I had the extensive work done with a ureothroplasty, vaginoplasty and clitorectomy. The one thing the urologist did mention wa a ridge in there that isn't specific to CAH that might be needed to be taken care of later. The gyno/oncologist also made a comment the work was equisite and it's ok that you can't comment on that and I hope that your child doesn't have to experience it either.
It wasn't a blanket statement but one person's experience with the topic and I expected others inputs for their own experience.
I been where it was it was driven into me - Don't dwell and don't think about anything that goes on with CAH. Shhh keep your mouth shout and really is that what gets you about me?
The surgery issues as well - people bring it to the board and some posts say do it and others like the pleas from BA, GG, Christy and others say please don't or wait a bit then the parent reviews and makes up their mind for their kid.
I think you look for what I write to trivilize it.
