Dear Samatha,
Understood the point of your post- Everybody has something but Confused by your reference of hyperplasia. I was under the impression that the word hyperplasia means thickening or enlarged and was meant to describe the adrenal gland.
Back in the DAY aka the 60's Adrenal Genital Syndrome was used and parents had it changed to Congenital Adrenal Hyperplasia with the hope of the focus being where correctly it should be on the adrenal gland lacking the cortisol.
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Not everyone with CAH even fits the medical description of intersex anyway. My medical records stated pseudo (false) hermaphroditism secondary to CAH. Does this describe everyone with CAH? nope but external I did look male w/ no testes we aren't talking about an enlarged clitoris ...what I had was the same shape as my pinky finger and I voided out the end of it and the whole labia area was as they wrote "fused" I remember what I was born with and liked it as kids do - it also could of been describe as ballon that inflated when I voided out of it. A period wouldn't of been able to push through this - as much as I loved it.
What I was born with was chopped off and scooped out - the urinary track was lowered and the labia area that was fused was sliced open and a canal was made. I think your post was talking about those with just the enlarged clitorises and not those of born where at first glance was thought to be boys but on further testing and gosh how far CAH has come since the 50's discover just girls w/ a messed up adrenal gland. Boring accept for that adrenal crisis part.
Intersex just a descriptive medical term- Cornell uses the word intersex in reference to CAH but it's just descriptive of the external site and not a moniker much like I have beautiful hazel eyes. Many with CAH don't feel intersex and I don't either - it's a medical descriptive term for me like how the Urology Dept. at Cornell uses it and the U of Mich. Am I female? Sure but I was born with an adrenal gland that lack cortisol like you but I make aldosterone ( I have 11- hydroxylase deffiency)
Would you be willing to write to the Intersex Society of America, Cornell Urology, or The University of Michigan/C.S. Mott's Childrens Hospital and tell them what you think about CAH and it's being used with the word Intersex. You are a nurse, they might be interested in what you have to say.
Like one nurse told me " you don't look intersex" and don't feel it but I wonder about those with CAH that for example aren't fortunate to have western medical monitoring - I was looking at a web site about CAH and Vietnam where having the cortisol med and care isn't a given like here in the states. If I was born over there in a less developed and finance poor country then yes would of grown up in the male gender- cute of course w/ a wee little wenkie and no testes I would of survived until a major illness set in because I'm a simple virilizer. A salt- waster wouldn't be lucky in Vietnam or some other places. I think medicine thinks global and not just us- with out the cortisol what would you be like besides having the adrenal crisis? All those excessive androgens would be flowing unchecked free to virilize. I also think about those where the excessive androgens really did more to them and maybe they like the word intersex as a moniker. As for that HBO special? I think it had more to do with trans and people that trans are looking for anything that will validate that what they have is medical and not psychological - our endocrine conditions seems like a good example to help them.
I bet you are a nice RN. I was in the hospital and a nurse told me that ambiguous genitals "look weird" I told her that I liked how I looked as a five year old - she gave me the hand (talk to the hand) and walked away.
I was thinking about becoming a nurse and I'd like to work on a burn unit.
