Congenital Adrenal Hyperplasia

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re: re: re: Not Easy
Mar. 1st, 2007   1:39pm

If someone voids thru what they were born with then phallus or phallus like but if just large or large where it even gets noticed then still a clitoris and maybe some education that yes - some girls genital areas are larger then others and no different than ears that are big or a nose that is big.

There really aren't any right or wrong answers in this but what matters is support all the way around for our condition ...our house so to speak.

How I was born didn't bother me at all and I've learned to have temperence with those that think that it did. Surgery - unfortunatly was needed because if they wanted to fit what the wacky adrenal gland did then i was going to need an out let for period blood. I could of waited because really after being exposed so the kind endo could take a peek and judge - now way did I change in front of others. Anyway - clothes bathing suits ect can be adjusted besides ....yeah some peoples clitorises do stick out but our society puts this Barbie image on everything and that isn't good or bad but just is.  If surgery for your child makes everything right in your world then it's a good thing and we are blessed as a condition to have wonderful surgeons that are interested in helping this condition. I think some might be surprised or never understand that even with the best surgery that I'd pick the genitals that I was born with until their was a medical reason to go under the knife- but that is just me and as a kid i got teased about things and some of those things were from CAH but I also teased right back. I had more anger with me from having my genitals fiddled with by a bunch of adults who ment well. I do have respect that the docs at the U of Mich ment well and thought I was happy to be viewed by a bunch of students that were learning in the 70's and 80's but nobody cared to ask me and just shoved a bottle of glue, construction paper, and macaroni at me while they the expercts did what they did.

They the experts went on to my parents about the social emergency of slicing up my genitals but the thing is that my mind was wired for the genitals that I had  but you can't be a little girl and be able to right your name in the snow and I think those of us with any conditions just by instinct understand trade offs and when it comes down to it? just fixng an adrenal gland. Later on I learned that my Dad told them at the time that this wasn't a social emergency for me and he was right but it comes down to it that eventually that on has to go somewhere and eventually things do happen to make that apparent. I went to pre-school with my what the heck are those genitals and the sky didn't fall in but went to the hospital to get genitals that looked more like Sally and ended up staying there with an infection that almost killed me. But really waht could of been done? I think that I would of been fine and then been asked about my own input about my own body without the surgeon thinking ...he's good ...he's a doctor ...slide down on my finger when I was because that is "less traumatic" and I want to see how my surgery went when you were five.....I would of been just fine home schooled and left alone instead of society making me useful for that uterus or without emotions ...just fixing an adrenal gland condition but really was the genital and gender police.

Poeple do their best as my parents did along with the cast of caracters of Endos, surgeons, nurses and students that wanted things better and to quote my Mom who is the best Mom and has more strenth than anyone I've ever seen stated "it was a judgement call" and then went " I'd do it again" (lol) she didn't hem and haw like any of you but when I told her that some parents get surgery on their kids with CAH and they were born with clitorises that were big or stuck out ..she went "why"? because from her point of view surgery was needed to get the phenotype to match the genotype and anything else was just big. To each their own view and all is good because those that have surgery now will help the surgeons gain experience for those later on. 

I had my gall bladder out last year and got better care than probly someone without any conditions. The old nurse went in a sing song voice " you were born with a penis and then asked me if "I had erections"I told her that all sexual organs do get erect  and I went  on that this is an adrenal gland condiiton and  thus females have no testes..thinking should I have to be taking medical conditions when I'm puking out my Gall bladder. I understand where you all want to protect but i hope you instill the inner strenth in her to deal with medical people at three a.m that really mean well. The nurse then asked what the texture was like and when I brought up  hey ...lets have solu- medrol ready to go for me ... the nurse had no idea and turned off stating she had seen it all as she walked out of the room as I was looking for the Endo's number in my purse. The nurse meant well and was just curious and really in a way kids are curious that something could be bigger or even smaller that what they have. 

I don't know if I've made any sence but i find if one really looks inside for the reasons for surgery for their own kid and also learns to stop assuming what other people thinks about their own condition and how they looked  deep breath  stops bashing those that speak out one way or the other - someone will pop that they are happy about their surgery and then another will pop up that they are happy not to have this done ...... this should be a given and  then this controversy will dissolve ......goofy, ugly women with PhD's will lose their funding and this surgery will be known as  ....It is what it is.

On a different note-  Thank you Danny for the Bible Passages because it helped me find the answer to something else I've been thinking about.

Just a thought




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