Hey! :)

[lazarus]

hi! i'm an "xy - turner" intersex (%88 xy - %12 xo). i live in Turkey. i've had surgery at the age of 17, my parents said that that's a surgery about cancer disease, they lied to me, this was only a normalization surgery. i learned that i'm an intersex at the age of 18, one year after the surgery. i feel really lonely about my situation, there is no one who i can talk about my sexual identity, there is no intersex around me. i've only some lesbian and transgender friends here but i need to talk someone like me.

[Kailana]

hello Lazarus, first let me say welcome to BLO. I hope you find the forum helpfull.

2nd let me say this clearly you are not alone ever. Tons of people are running around you and you will never know without them telling you.

I can try to help if you wish, once upon a time I was dx'd as XY/XO so yeah i am familiar and plus I do love your use of Turner Syndrome but generally for those of us with a Mosaic karyotype we would be called Turners Mosaic and not Turners as Turners Syndrome is generally a reference to phenotype females with Turners.

Still I do like seeing the use of Turners cause very few especially within the intersex community understand what it means.

So welcome once again and holler at me anytime.

Oh and while I am having an issue or have been for many years over being XY/XO i still fall back on that diagnosis. It is questionable even to me, but I do know more then most when it comes 45XO/46XY Turners Mosaic Males.
My apologies if your Turners Mosaic Female, it does happen as well.

[JOS]

i feel really lonely about my situation

Hopefully coming here will help :)
welcome

i learned that i'm an intersex at the age of 18, one year after the surgery

it can come as quite a shock to feel you have been mis-led, how are you coping with that?
I too found out I hadn't been told the full details and I felt pretty hurt by it

Jos

[lazarus]

the forum seems really helpful, thanks for your warm welcome.

i live as a woman (for now, at least... but i feel i'm entering in an interrogation period about my sexual identity - gender), i'm not open as an intersex in the city i live.

i'm also a versatile lesbian, with a little bisexual affinity... in turkey there are some gay - lesbian organizations but no intersex organization. i'm happy to encounter all of you and want to share our stories.

do you know the difference between ais and xy turner? i dont have enough information about my situation. can you inform me? i don't have much body hair, i'm only 1.63 centimeters tall and not much masculine looking, a little girly but actually quite childish. my undeveloped testicles have been taken and my clitoris is resized at the operation. i only know that i have %88 xy and %12 xo. i've been raised as a girl, by my parents.

[fraulein_Maria]

do you know the difference between ais and xy turner?

>>> yes, we do. AIS'ers "only" have one "X" and one "Y". not a single cell is XX. not a single cell is XO. the completes do not look the least bit ambiguous at birth or later. they are raised female and no one is the wiser until after they develope but do not menstruate. Paiser's are rarer and depending on the grade can either be ambiguous or no different than any male. the test to confirm a dx of pais is a testosterone challenge on a piece of your tissue in a petri dish. <<<

i dont have enough information about my situation. can you inform me? i don't have much body hair, i'm only 1.63 centimeters tall and not much masculine looking, a little girly but actually quite childish. my undeveloped testicles have been taken and my clitoris is resized at the operation. i only know that i have %88 xy and %12 xo. i've been raised as a girl, by my parents.

>>> sounds about right. :) welcome! its nice to have a real one here. :)

there is a website for turner's mosaics (brain fart! arrrrrrrrrgh the URL was posted here once, use the forum search feature) but my recollection is that you'd get medical facts but not much support unless you are a "parent".

that being said, it would be great if you began bringing them here so we can open up a new room for them..... Mosaicism is one of the 6 most common IS conditions and as such, deserves it. :)

[lazarus]

i think i'm rare :( is it hard to find a female xy/xo mosaic? i'm lonely even here...

am i in a risk of bone loss too? i gave up to take hormone pills years ago (i used premarine and farlutal for a while) i don't take them anymore. do i need to take pills for preventing bone loss? i dont want :( pills manipulate me and make me extremely emotional like pregnant women :(

[Kailana]

http://www.xyxo.org/

its informational with many links and case studies.
You can find out alot at the sight, wish there was a forum where people could talk.

still very good resources provided which can help alot.

In General:
an XY/XO Mosaic Turners can look like anything and be raised as anything. Boy or girl we are well pretty much either what we most look like or what doctors or parents think is best. Basically if indeed XY/XO Turners then it means you have some Turners features which is generally considered a Turners Mosaic Variant, ie the XY cell line doesnt usually fit Turners Syndrome in most Texts but does when there are similar physical features present. <----I swear that took years for some people to understand how an XY/XO can be Turners Mosaic. often an XY/XO is mixed gonadal dysgenisis sometimes perfectly normal and very few really understand that with an XY/XO mosaic cell line it is how the person developes and the gonadal developement that tends to get people classified with different conditions.

I am still challenging an old XY/XO Turners Mosaic Karyotype from 93. Yet I have done tons of lookiing around for better and beter informatoin.
Some of my family and medical 2nd information adds a whole lot of doubt and for the last 16 years I have not been able to confirm whether or not i am indeed XY/XO as was reported in 1993.

Still I do have alot of knowledge.

First of all, I want to say you do need some kind of hormone therapy, unless you do happen to have an ovary internally. If not then without a stable hormone regimine you are risking some serious bone health issues.
osteoperosis is a major concern especially as you get older, while your still somewhat young you need to keep your bone in tip top shape or your later years are just going to suck.

Plus a steady hormone balance you would not be all hormonal and emotional and it will actually provide a great deal of stabily. Should say premarin is not a good choice, most doctors would prefer you inject or use a patch.

Not sure if you a uterus or not, there may be some issue's if you do, but if not then you should be fine.

ask anything you want and I can try to help you find the answers you are looking for.


I think I will make a vid next week I hope, once some books get here. it may help you understand a little better on variation with a XY/XO mosaic Karyotype

[M-A]

Welcome Lazarus :)

i don't have much body hair, i'm only 1.63 centimeters tall and not much masculine looking, a little girly but actually quite childish.
Sounds a lot like me... I'm 1.63m too and people think I'm teenage (though I'm 29). Do you have body or facial hair that grows sideways or in all directions randomly ? Or asymetrical stripes/spots of it ?

i've been raised as a girl, by my parents.
...
i've had surgery at the age of 17, my parents said that that's a surgery about cancer disease, they lied to me, this was only a normalization surgery.

It must really suck to feel betrayed by the very same people you depend most on :( Did you confront them about it, or did they give you reasons for doing that ?

[fraulein_Maria]

[QUOTE=lazarus;21940]i think i'm rare :( is it hard to find a female xy/xo mosaic? i'm lonely even here...

>>> most are raised female. if there are not many here, its for the same reason there aren't many other IS females are here..... it takes a strong stomach to listen to dozens of guys claim to be "just like you". <<<

am i in a risk of bone loss too?

>>> that depends. do you still have your gonads? do they function? <<<

i gave up to take hormone pills years ago (i used premarine and farlutal for a while)

>>> oh my. <<<

i don't take them anymore.

>>> good. there are MUCH better estrogen replacements than that. <<<

do i need to take pills for preventing bone loss?

>>> not if you go on the patch. :) <<<

i dont want :( pills manipulate me and make me extremely emotional like pregnant women :(

>>> if premarin is all you've ever been on, its no wonder. its the estrogen that's the least like natural human estrogen. there are over a dozen different types, including one that you can have as a ring! sit. down with your gyn and make him/her discuss ALL your hormone options. demand to be treated like an adult.... and if he/she won't, its time to shop for a new one... and i do mean SHOP. keep looking till you find one that LISTENS to you.

good luck :)

[lazarus]

you're wonderful people! :) thank you very much for all the information! i'll try to find a good doctor as soon as possible, i tried many but you know how naff most of them are.

Welcome Lazarus :)


Sounds a lot like me... I'm 1.63m too and people think I'm teenage (though I'm 29). Do you have body or facial hair that grows sideways or in all directions randomly ? Or asymetrical stripes/spots of it ?



It must really suck to feel betrayed by the very same people you depend most on :( Did you confront them about it, or did they give you reasons for doing that ?

M-A: i'm 29 years old too :) yes, i was very angry at my parents and doctors. but not angry any more. because i'm ok with myself, i accepted myself as i am.

[JOS]

... that doctors don't make it clear that there are a number of different product options.

they seem to put us all on premarin (horrid horse-wee stuff uuurk!) and leave it as that??

I didn't get on with premarin either and spent 3-4 years being itchy and a little bit psyco :frown:
swapped to climaval and my whole being changed overnight (pretty much):)

as Maria said... talk to the doctors about switching product until you find one that suits. that way you can protect your bones too

take care
Jos

[isma]

I am really happy to find you. i am from a nearby country. About your parents they did not lie about the surgical operation as the testicles if not removed there is apossibility of cancer after the age of 33. I suffer from the same problem of being unable to understand myself, am i a gay or what as i have bisexual affinity though i was raised as a male by my parents. So i hope we could become freinds

[lazarus]

I am really happy to find you. i am from a nearby country. About your parents they did not lie about the surgical operation as the testicles if not removed there is apossibility of cancer after the age of 33. I suffer from the same problem of being unable to understand myself, am i a gay or what as i have bisexual affinity though i was raised as a male by my parents. So i hope we could become freinds
hi isma!

where do you live? i tried to send you a pm but couldnt... my email address is " bon_sauvage@<hidden> " i use this address for both email and msn messenger. please contact me.