We are looking for a better way and what serves our condition better if you took it any other way? I really can say that I'm sorry and can see that you are seeking for something and feel that the medical community isn't helping maybe going to a larger medical institute that is part of a university might give you the answers that you need?
I know people with other intersex medical conditions that don't find the word intersex useful either.
This is an adrenal gland condition and the advancement in medical knowledge is awesome for us and for other medical conditions that are under the intersex umbrella. I was born without the ability to make enough cortisol and others died as babies without new born screening.
Does intersex fit for CAH? and that is all this is. Intersex as a medical term sure but it doesn't describe everyone born with CAH but that is all you read about and I think that sucks for us.
This condition isn't that dark and mysterious--- it's an endocrine condition. The term intersex is being used instead of the medical conditions and that's why it's good to toss around the needing of it. Plus, some people are wanting to see intersex as some sort of identity and that is cool if that is what they want but they are a very small group ...and NO! not Betsy, she isn't that found of the word either : ) lol .
Heck, I like the term errors of sexual differentation... gasp! I think THAT TERM comes from John Hopkins lol or the the term female pseudo-hermaphrodite secondary to Congenital Adrenal Hyperplasia. Not everyone with CAH would have that either. I also find the term prader scale good to describe what may happen to a female baby with CAH.
I like the word ambiguous genitals ...I respect that the ISNA doesn't and as a child I knew by instinct that although what I WAS BORN WITH WASN'T ALL that of a bother to me But yet wasn't quite right....it was cool looked like a deflated ballon but sooner or later it had to go and that is a hard thing and yes I hollar and jerk some very educated chains--- this makes me feel better but when you have a medcial condition you understand things. Shrinks think I'm fine : )
I could of been included on the surgery too or been done earlier nothing to do with sexual identity for me ...sexual identity is internal not external and this again comes from an adrenal gland and a draw of the cards in what the excessive adrogens did and that part really who gives a crap but please please my adrenal gland comes first when it is all said and done it's nice to play around with all that other stuff but i WANT to physically feel well and also have the awesome medical people know that this person needs solu cortef before during and after any medical procedure.
If you took it as those people are freaks? I wish I was half as good looking as someone with AIS or as tall or as nice and wise as some people that have trans to another gender ....I'm cute but that's about it but when you're condition is confused with theirs or other Intersex conditions just Like I know that someone with AIS doesn't want their condition confused with any other either. It's pride thing there ---just like people say they fought cancer .
It gets you and may also medically hurt you ...The worst is when we are all white washed with the word Intersex or the word that comes out intersexual if someone wants to think of them self like that OK but that's them. These words were a block in getting my cancer diagnosed ...you talk about the term being useful? Doctors need to learn what the specific medical conditions are Really about before a general term is slapped on them. Yes Doctor ....women with CAH can and do have their partners children ......
I think many medical conditions are freaky in that one doesn't come across them or know about them ..really CAH isn't that rare but isn't given a lot of play time...air time at the med schools like other endocrine conditions ....it only took three Coronas to get that out of two really nice med students on their night off diabetes gets more air time. There are other medical conditions that also don't get mentioned that much either.
I might be a freak at times but isn't everyone? ....and of course marriage and all that ...whew ... but it doesn't have anything to do with CAH ....well ok maybe a little ... actually medical conditions suck and at times are really hard to deal with ....just at times parents ....that's all we go on to have wonderful lives and life is what you make it.
What about your specific symptoms? what if they brought up the specific birth defects that seems useful also. I wish you the best in finding the help that you need.
