Chances are, if you’re reading this blog, you know this already. But, I think it will be good for me to announce this publicly, without anonymity.
A couple of years ago, I had some tests done because I had never had a period. I was 20 at the time and didn’t really care too much. I mean, no period? Yay! I never considered that a bad thing.
But, it was time to find out what was wrong with me. Having scoured the Internet for the past year, I had ruled out a lot of things, though there was one thing in particular I had not ruled out. And that was Swyer syndrome.
Well, after the tests, it turns out that I was right. It was Swyer syndrome. This is an intersex condition that is not detectable unless chromosomal tests are done or puberty is stunted, whichever comes first. In my case, it was not until February 2007 that my diagnosis was given.
When the endocrinologist read out my karyotype – XY – I was not shocked. I was not scared. I was not traumatised. I had to prevent myself from smiling, because I realised that my research had given me the correct diagnosis. Really, I felt proud of myself. Especially since the endocrinologist didn’t know what the condition was herself, and had to ask colleagues about it.
For those that haven’t read the linked Wikipedia pages, I was conceived with a faulty Y chromosome. Though I was supposed to turn out male, I ended up almost entirely female, the exception being a lack of functional ovaries.
Ovaries and testes are called “gonads”. In the womb, a baby has the potential to grow either from their initial gonads, and which one they grow depends on their second sex chromosome (X for females, Y for males). I have a Y chromosome, but it didn’t work properly and no testicles developed. But because there wasn’t a second X chromosome I also did not develop a set of ovaries. My gonads just did nothing, and they are sitting inside me, attracting hormones (FSH) that are trying to stimulate them to produce puberty hormones. Instead, each day they increase my risk of developing gonadoblastomas, tumours that are largely benign but given enough time can turn malignant.
So, I need to have my gonads surgically removed.
Oh, in case you’re wondering why I turned out mostly female, it’s because female is the default in humans. A foetus must have a properly working Y chromosome to develop testes and a male anatomy. Otherwise, they will develop a female anatomy; even a uterus.
So, what does this mean for me? Well, first of all, I have a severe risk of developing osteoporosis at a young age. I’ve already been diagnosed with ostepaenia. The thing I’m supposed to do to counter this is to take estrogen, in the same form that some post-menopausal women take. This will have the side effect of inducing puberty, and ultimately causing me to menstruate.
I started taking it before I went overseas. Got 6 months in. My boobs were sore all the time. When I went overseas I was told to stop taking it in case I got a gonadoblastoma and the estrogen might have helped it grow. I enjoyed not having sensitive breasts… a lot.
Since then I haven’t been back to the doctor about it. I’m scared, to be honest. I don’t want to have surgery, and I don’t want to menstruate either. I’m also not that into the idea of having breasts.
There is an alternate option, though. Through some research, I’ve found a drug that is like a synthetic estrogen, but only prevents osteoporosis and doesn’t act like estrogen in a sex-hormone way. It’s called Evista. I plan to speak to the doctor about it, when I eventually get around to seeing one :/
It’s good to get all that off my chest.
BTW, I suppose I should also mention I can’t have children.
