My experience of living and coping with CAH
As a female with saltwasting CAH, growing up was quite traumatic. My parents knew very little, as doctors had simply told them I would need steroid replacement for life in order to stay alive and that they could ‘fix me surgically’ for the genital ambiguity. While doctors were allowed to examine, poke and prod intimate parts of my body, no explanation was given to me other than ‘Take the tablets, have the surgery, don’t ask questions, don’t tell anyone anything and don’t touch, everything will be OK.’ In reality it has been far from OK. I became very shy and withdrawn. While my peers always seemed to have lots of friends, went out and so on, I stayed in, had few friends and felt unable to talk to them. I was forever in and out of hospital and had endless hospital visits for check-ups. The surgery was very traumatic.
Age 4
Total clitorectomy. My enlarged clitoris of two to three cm did not bother me or cause pain. Following surgery, I had lots of pain and heavy scarring and was always told not to look at or touch my body. I was extremely frightened as I was well when I went into hospital and came out feeling ill with a huge sense of loss, even though at the time I did not know what had been done to me, or what the significance was going to be later in life. I just knew that something was missing. I went from being a happy child, although quite sickly, to being withdrawn.
Age 11
First vaginoplasty. Again no explanation other than ‘Something’s not quite right and the doctor will fix it. Don’t ask questions.’ As I was just into puberty, this was traumatic with a gynaecologist poking and prodding intimate parts of me followed by surgery.
Age 12
Told at check-up that I would never be able to have children. I was totally devastated and became more withdrawn. I was also told that if I wanted to marry I would need to see a gynaecologist before doing so and not to ever let anyone, especially men, see my body except for doctors. The surgery is supposed to make a female with CAH more ‘visually’ and physically acceptable sexually to men and to enable ‘married life’, which I later realized was a euphemism for sexual intercourse.
Age 13
More surgery as the first vaginoplasty had scarred and developed stenosis (scarring that causes surrounding tissue to shrink) and had adhesions (small pieces of tissue that had stuck to the sides of the repaired vagina). No one had explained to me at the time why surgical packing had been placed inside me or why there was lots of blood so I had pulled the packing out as it was agonisingly painful. This had resulted in a sharp telling off by the doctor, nurses and parents at the time and the warning that I would require more surgery as a result. The final surgery was to remove the adhesions and widen the vaginal opening.