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Intersex Voices: Natalie (Swyer syndrome)


Natalie tells the story of how she eventually learned of her diagnosis of Swyer's Syndrome.

I've always been different. And I've always known I had some unusual genes; I was born with 11 toes. I didn't get along with most boys, or girls. I was teased mercilessly at school, which made me even less interested in opening up to people. As I got older, I noticed everyone else developing - my sister got her period at 9. So my family and I began to worry when I reached age 16 without so much as breasts. I'd developed a modest amount of pubic hair, but hadn't gone further...

After seeing the endocrinologist, I had a chromosomal analysis done. I returned to the doctor, who told me everything was fine, thinking my puberty was just stunted for some reason. Then she double-checked the results. I watched her face drop, and I strained to see the faint words from the wrong side of the paper. Karyotype: XY. I was right. Instead of being filled with horror, I was filled with a strong sense of amazement. I tried to hide it as the doctor tried to regain her composure and explain the result. Being unfamiliar with Swyer Syndrome, the doctor told me she thought it might be AIS. Not remembering that much from when I had read about it, I didn't try to contradict her. But when I got home, I looked it up and it was at that point that I was sure I had Swyer Syndrome.

The next time I saw the doctor, she had spoken to a colleague that knew more about intersexuality. She chose her words incredibly carefully, trying not to make me upset in any way. "You were never supposed to be a boy", "you're definitely a girl if you feel like a girl.. unless you feel like a boy, which is okay too", etc. I respect her for that, but she needn't have done that with me. She did confirm that I do not produce eggs and therefore can't have children except through egg donation. This didn't phase me either, since over several years I'd come to terms with possible infertility due to my lack of menstruation. I was then prescribed Premarin, which I've been on ever since (9 weeks to date). I hope to be able to fight osteoporosis with my HRT and daily calcium supplements.

I personally find my condition to be beautiful. I feel like I know what and who I am now, and I realise just how amazingly unique I really am. I have to really credit Google for allowing me to do such extensive research. There is nothing about intersexuality at my local library. But discovering this so long ago really allowed me to process the possibility and realise that it's not that bad. Sure, my life will deviate significantly from the norm... but it has my whole life anyway. Now I have an excuse ;)

Read more: Natalie's Story (AIS SG, May 2007)


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