Finally I KNOW!

[Natnie]

Hi everyone! I'm Natalie. I was, just this morning, diagnosed with AIS. And yet I had suspected as much up to a year ago

But I finally got my chromosomes tested; my endocrinologist is making me have the same test again just to be safe. That's great except that one test costs $450 Australian! (Yes I am from Australia)

So I'm 20 and a girl so I guess I have Complete AIS. The thing is, an ultrasound I had shows I have a uterus and ovaries, even though they are really small. My endocrinologist seems to think I could be fertile?! I haven't read anywhere that shows that as a possibility for an XY girl. Is it possible? Not that I have too much interest in intercourse though. I am asexual.

It's interesting that in the last 6 months I have been incredibly interested in gender identity and intersex issues, and now it turns out I am one.

Pleased to meet you everyone! I hope to join in many conversations.

[CC]

Hi Natalie

But I finally got my chromosomes tested; my endocrinologist is making me have the same test again just to be safe. That's great except that one test costs $450 Australian! (Yes I am from Australia)

If you live in Australia, Medicare will cover the cost of the Karyotype

C x

[Priestess]

Welcome Natalie,

Life is an adventure, isn't it? Maybe we've all got unusual destinies ahead of us.

I'm afraid you might need to be a bit careful with how you introduce yourself here. Some of the long-time members are quick to judge newcomers as fakes and poseurs, and once they've branded you in their own minds they never let abnormal medical results change their opinions. And the AIS community as a whole has a reputation for being extremely paranoid. For example, when you mentioned small uterus and ovaries, the AIS'ers were probably already saying "impossible", and they've blacklisted and excommunicated medically verified women with AIS for being much less outside their norm.

(I won't bore you with how they treat weird unknown-syndrome birth defects like me) (my avatar says it all, strange how I don't *feel* like a space alien)

[Natnie]

Hi Priestess

I see what you mean. I don't really know why I would pretend to be this! But since my last post I have been doing some research and I think I might mention Swyer Syndrome to my endocrinologist, since to me that seems to more fit my biology.

Either way, I know for a fact I'm XY. It's sad if people would shut me out for being different, when they themselves probably know what that is like! Oh well. I will give others the benefit of the doubt and hope they do the same for me.

CC: Will they? I know I will get a rebate of some kind, I just don't know how much. Thanks
Still, it's proving to be an arduous process. I wish I could get my endo appointments closer together than once a month.

Also as an extra "I'm-a-genetic-mutant" tidbit, I was born with 11 toes.

[Priestess]

Well, one of my aunts has 6 toes on each foot And on that side of my family there are scattered cases of zero-virilization/sterility. I'm not sure if there is a connection.

It should be easy enough to tell if you have AIS or something else. AIS tends to result in having no signs of even normal female virilization like UA/pubic hair.
And if in doubt, they have a test involving applying a bit of testosterone gel to some part of your skin and seeing if any hairs sprout up.

Your case would be similar to my own, perhaps, except that my uterus etc aren't tiny. And the doctors harmed me greatly by bickering over how "XY" conflicted with what they were seeing, instead of treating me. It took a long time, but I did find a condition that was an exact match for all my symptoms and test results.

[Natnie]

Aha, if that's the case, it is quite clear that I have something other than AIS; I have a small amount of pubic hair.

My endocrinologist obviously hasn't got a lot of experience in this area, but she said so herself and told me she was going to consult with other doctors that know more.