Natalie's Story

[Received May 2007]

My story is not one of anguish, unlike most others. I'm one of the lucky ones. The information age [availability of the web, search engines etc.] played a huge part in my eventual diagnosis and the way I handled it.

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.

My mother took me to a gynaecologist, where I got my hormone levels tested. All he said were that my hormone levels were post-menopausal and that he thought my puberty was just 'stuck' and could be kick-started, but only when the demand for children came along. Not knowing much at the time, I believed this. In retrospect, it seems really pseudo-medical and I don't think I would recommend that doctor to anyone. The doctor also suggested we get a chromosomal test. I was keen to do this, but my mother was too concerned about the cost.

So four years went by, and it became apparent that I certainly was not just a late bloomer. My feet had reached a size where I simply couldn't fit into any women's shoes anymore, and my height was 178cm, which was much taller than even my father, and almost as tall as my half-brother. I had taken to wearing a molded bra that I didn't fill out, but gave the illusion of size A breasts. At this time, I had also realised that my sexuality didn't seem to exist. I wasn't sexually interested in anyone. And as I spent hours online, looking for reasons I could be undeveloped, I came upon a Wikipedia article on Swyer Syndrome. I immediately bookmarked it, since it was the only condition I'd ever found that described me precisely. It was there in black and white: XY gonadal dysgenesis - a chromosomal male that turns out an underdeveloped female. It was this time that my gender identity started to erode, and I was starting to feel quite androgynous.

So, I told my mother we needed to see a doctor again. I had my hormones tested again, and because I was older the doctor was open with me about the results. She gave me the results and a referral to an endocrinologist and pathologist for an ultrasound. I read the results: FSH 75 [FSH = Follicle Stimulating Hormone, a hormone from the pituitary gland at the base of the brain that stimulates the ovaries]. With these new details I was able to do some more online research. It brought me to the same thing, Swyer Syndrome.

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 ;)

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