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Intersex Voices: Anonymous (Swyer Syndrome)


Experience: I’m a woman who is genetically male (Guardian, May 2015)
‘Initially I liked being “different”, but when at last I was given a diagnosis, I was distraught’

I had always been unusually small for my age, and people often thought I was three or four years younger. Although I initially liked being “different”, towards the end of primary school I began to tire of it and underwent tests to find out if there was a reason for my short stature. They didn’t reveal the real cause.

As my early secondary years rolled by and I watched my friends turn into women one by one, I remained defiantly prepubescent. I was at boarding school, which didn’t make things easier – frequently teased, I became increasingly self-conscious. In my GCSE year, having still not had a growth spurt or entered puberty, I had further tests, and at last I was given a diagnosis. As a result of a rare and little-known condition called Swyer syndrome, I had been born with male chromosomes.

As a result, my body had been unable to produce oestrogen, without which puberty can’t take place in girls. Although I had a uterus and fallopian tubes, my ovaries hadn’t developed properly and could not produce eggs. There was a big risk of them becoming cancerous, so they had to be removed – this was in the days before keyhole surgery, so it was a major procedure – and I would require years of treatment to prompt the changes that should have occurred naturally...

Swyer syndrome is a very rare condition, affecting just one in 30,000. I’m yet to meet anyone else who has it and I’m still coming to terms with it. Spending years being made to feel a freak has never left me, but it’s no longer always at the front of my mind.


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