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.
Tags: intersex
Hi, You are terribly brave and I admire you for being able to be so open about this and spread awareness. My partner has a similar story to yours. He also didn’t have a period until he was about 20 years old. I on the other hand was born female and had a ‘normal’ functioning puberty but never felt that I fit really as a female person, i mean certainly not a ‘woman/girl’. So, I am now a Female-to-Male transgender, on hormones, Testosterone that is. I just started in December 2008. and yes what you said on youtube about having puberty in adulthood is a very odd thing, is true. Though Im thinking its probably quite different for you. Anyway I just wanted to say Thanks for sharing your story and I hope you will find something that works for you. I undertand about you being scared. I’m scared of any surgery, too. and i know what you mean about the sensitive chest, i hated having that so much, i had it every month for about 15 – 16 years of my life. its horrible! Well, Take care. I’ll be sure to watch all your vids on youtube. Bye!
Hi there,
Nice to see that you’ve been able to come out to your family.
My sister has what sounds like a very similar condition to yours – she had to have hormone treatment in her teens to start her periods, and she never properly grew breasts (she had implants a few years ago). A few years ago she had appendicitis, and while she was being operated on for it, the doctor looked around inside her and couldn’t find any sign that she had ovaries (although she must have some if she keeps having periods).
She doesn’t have any gender issues though – she’s a woman and that’s it. I guess she had treatment (I wasn’t aware of most of this as I was away at boarding school) because she realised that she wasn’t developing as girls normally do. Didn’t you go through any of this when you were growing up? (Don’t mean to be nosy, honest.)
Hi Nat – fellow Swyer girl here. Nice to see someone representing out there!
Hi,
Yes, we’re lovely Swyer girls, I think, streamlined … what are the implications of having that Y chromasome? What do we know that other women miss? I am moved by your positivity and celebration of your own uniqueness- but don’t underestimate the possibility of shadows…
After my ovaries were taken I had a hard time with anorexia and depression, and feel that hormonal weirdness was involved (along with lots of other stuff). So take care.
I’m grateful for your blog- in thirty years I’ve never spoken to another person with our condition!
xx Eva
Good going, Nat. All the best, and don’t be a stranger, Ok?
Hi Natalie! Glad to track down the new blog, and I see you decided to disclose this information publicly. Brava!
I would however like to correct a mistake. I too have XY chromosomes, but not Swyer syndrome – Partial Androgen Insensitivity Syndrome.
Your syndrome is the only known condition in which an XY karyotyped individual _has_ been able to bear children – but it neccessitates a donor egg.
I think you probably know this, and probably intended to say that you couldn’t without medical intervention since you have no eggs nor ovaries; but I wanted to be sure those reading it would know this too.
Unlike you, I was born without a uterus, so it’s considered as impossible as with any woman who has had a hysterectomy.
You’re so brave for telling the world without hiding behin a pseudonym like me!
Cheers!
Hi Elle!
Yes, I was certainly aware of that. But, as far as I’m concerned I really don’t want to bear someone else’s baby. I’m quite happy not to have any at all. Thanks for the encouragement