Greeny News

Women who have congenital adrenal hyperplasia should not have to face surgery on their genitalia to make them 'normal'

In the news recently there has been a spate of stories about what happens when surgeons make mistakes. But when it comes to "women beat 's", the proportion of male arrogance and ignorance exciting means, the result can be very difficult, even when - they say - they' re get it right.

Shocking article by Professor Alice Dreger and Ellen K Feder over at the Hastings Centre's Bioethics Forum reveals how US clinicians have been evaluating the results of invasive and possibly unnecessary surgery on girls' clitorises â€" by poking them with cotton swabs and applying "medical vibratory devices".

These techniques, apparently, are needed to determine just how much sensation the girls have left after partial clitoral surgery â€" itself an improvement on previous practice, which was to cut the offending part out entirely.

Why? Many patients suffer from congenital adrenal hyperplasia (CAH) â€" which leads to various effects, including enlarged genitals. CAH itself is serious and usually needs treatment: the side-effects, unless they cause physical complications, do not.

But girls need to grow up to be "normal". Behind this concern for normality, there seems to be some fear that girls with a "masculinised" clitoris might grow up to be a lesbian â€" and that would never do.

I spoke to one survivor of this technique yesterday. Janet Green, now 53, told me how she was operated on twice in the 60s. She was traumatised. She is still angry â€" and she is glad that there is now an uproar about this technique. Condemning the idea that everyone's body should conform to what society and medicine are happy with, she said: "Having this condition doesn't mean our bodies aren't working: our sexual function will be what it is."

Janet was unlucky enough to have grown up in the United States. Here in the UK, the current approach is much gentler, reflecting an assumption that it should be acceptable for boys and girls to look far from "normal": that intervention should be minimal and based as far as possible on health considerations alone. A pioneer in this approach was Sarah Creighton, who now works as a gynaecologist at University College Hospital.

I am also lucky to live here, now. At some point in the next year or so, I will be undergoing gender reassignment surgery. Hopefully, I'll go with the vagina and some semblance of the clitoris.

I might be less lucky if I were one of the dozens of women who go under the knife each year in the UK and wake to find that their surgeon has done damage â€" sometimes serious damage â€" to their genital area. Mistakes happen: no one can blame professionals for that.

What is far more disturbing, as I am finding out from a series of women I have spoken to as part of my own research on this issue, is how defensive, how arrogant the medical establishment can be when challenged. One woman, who now finds sex painful and embarrassing â€" who even finds riding a bike uncomfortable â€" was told this was "normal". Another, on questioning her near total loss of sexual function, was referred to a mental health professional.

The problem is, far too many male surgeons just don't get it. Bodies â€" women's bodies â€" are just interesting pieces of anatomy and consequences, outcomes are not their responsibility.

Dreger quotes a surgeon, she asked what he really knew, scientifically, about the functional physiology of the adult clitoris. She said: "He looked at me blankly, then said:" But we 're working on children. 'As if they never grow up. "

Quite.