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re: re: re: re: Not Easy
Mar. 5th, 2007 11:06am

Wow, well this is my first time on this site – I have heard that the was a site but I did not believe that there we so many people with this condition – nieve yes. I thought my family and I were the only people that needed to know what was going on. I am not the one with CAH my daughter is.

She will be 16 in July, she was diagnosed at birth, the question was – was the baby a boy or a Girl – a mid-wife delivery, the poor woman had no idea what to tell us or how to react. Here was a child with what did not look normal. Her Dad was a basket case he could not face the family or anyone else. I was 20 years only and all I could say was look at my beautiful baby who could lift her head and move it from side to side.

The next day we were introduced to the "Specialists" the Endo's as you refer to them – the tests start, blood from the soft spot pin pricks to the hills – 13 days later after all the X/Y test they told me that she was a little girl, with a uterus and ovaries – they then tried to explain to me what CAH was – I was young and believed them, they know best they were the specialist – at 5 weeks she had her "corrective surgery" the "reduction of the Clitoris" and the creation of the virginal passage. This to me was normal, but I found out later that the reason for the operation on her being done at such a young age was that the hospital had overseas visitors and they had no idea when they would have such a young subject again.

Life - living with CAH started, testing started meds started – every time we went to the doctor drop the pants and lets have a look – things look good – really – with the meds and having the operation at such a young age – any one living with CAH will know you have controlled and you have controlled depending on various thing – well things grew and again we did not look so normal. At the age of 4 she had a apses on her labia – the reason for this, when they did the first operation a small piece of fatty tissue in and this now caused the apses. At the age of 10 the Acne started and the weight issues started, at the age of 12 a brown discharge started it was uncomfortable and had a bad odder – we were then referred to a Endo who specialized in puberty. Then we get told that she should never have had the first operation so young now days they let the child decide what they want, for many reasons – main one the psychological and emotional side, then the fact that let the child grow a bit and get into a controlled situation and my favorite is the fact the there is a % of these girls turn gay and they might want to use it.

Well we had to have the 2^nd operation – when they did the operation at 5 weeks they had used hair producing skin and this was now blocking the Virginal passage and her menstrual period was being redirected to the rectum. 2 weeks after the operation, her skin cleared up, she lost 7kg and her breasts started to grow.

The prompt for me visiting the site – she tells me today that she is gay, well "just a thought" your mom was and is right, big small fix it if it does not work – yes some body might see what they are hiding, my daughter always did – she always had so many people looking at it that when she was in charge, nobody looked at it. This affliction is hidden – teach your children to love themselves and be who they want to be, be honest and speak openly about the condition – who is normal the people who want to change everything to make us look normal. Or the ones that feel normal.