Is there an easy way to find out if you are intersexed?

[Rachael]

how is she a genetic girl then ? ( i hate transfolk abusing that word when sometimes its utterly useless, ie, shes not a genetic female, and i am, only she was born female, i wasnt... irony eh?)

R >

[Michelle F]

A huge part of going to doctors for a diagnosis is that the area hasn't been fully looked into yet. Thus, sometimes patients actually have to educate the doctors on this stuff. It is hard to find two doctors who agree on what is intersex and what is not. Some don't even believe Klinefelter's or AIS is intersex!!

I found this out painfully after spending 6 months with a well known Southern Ca endo, who kept telling me "I don't see anything intersex in you" (look again at my picture...huh?) He told me I had a body image problem and suggested I see a shrink. I was at the doctor because my therapist had told me " I can't honestly diagnose you TS according to the DSM because I think you are intersexed".

Even though doctors tend to consider IS to be non-life threatening, there are issues with gonads becoming diseased and low hormone levels causing health problems.

So... if you think you are, get it checked out. I was one of the ones who always suspected I was, but got kicked out the door (without a blood test or any other examination) as a "gynecomastic transsexual". I finally had had enough and pressed for a hormone test, and that's when the fireworks started. The doctor started saying "THIS DOESN'T MAKE ANY SENSE, How does your penis look so normal with these kinds of estrogen levels?, how did you have kids?", Etc. To make a long story short, they weren't kicking me out the door any more.

My best advice to you is get your hormones checked first, then if there is a reason, go for the karotype, then go from there. A hormone test is relatively cheap. (compared to a karotype). Plus, a karotype really means nothing if you are mosaic, chimeric, or a true hermapohrodite. a huge percentage of true hermaphrodites are completely xy,( and yes some of them have normal penises, and have fathered children) so are Klinefelter's, AIS, and persistent mullerian duct syndrome, not to mention the rest of the conditions.

BUT... before you spend a dime, find out what the examining doctors views are of what actually constitutes an intersex condition. After 6 months of seeing my doctor and hearing "no intersex, get a shrink", I found out that the only condition he considers intersex is ambiuous genitalia.

I changed doctors and got a completely different diagnosis.

See what I mean, doctors are just people too.

Good luck anyway. And trust me, having an intersex diagnosis will not make biggots be kind. They will only say things like "even if you have male and female parts, we don't want anything to do with "her", and kick you to the curb just the same. The best thing to do is weed the biggots out of your life.

Hugs to you.

Michelle F

[Keira]

An AIS has a male DNA and looks like a ultrafeminine women,
so the woomb on they devellopped as women.
I never heard of a FTM AIS, and its a good thing because there
would be no solution.

They have no sensitivity to androgens so even if they where given
androgens it would be useless.

[Sarah]

Thanks Michelle!
That's very helpful!
[hugs]
Sara

[Schala]

An AIS has a male DNA and looks like a ultrafeminine women,
so the woomb on they devellopped as women.
I never heard of a FTM AIS, and its a good thing because there
would be no solution.

They have no sensitivity to androgens so even if they where given
androgens it would be useless.

You're speaking of Complete AIS and high-level Partial AIS on the Quigley scale - that is, not grade 1 and 2, where there is little to no genital ambiguity and the body looks male at birth. The hint to AIS is having a lot of androgens and no response (or a low response) to them.

Also, most AIS women, even Complete AIS, don't have an uterus, because of the presence of Mullerian-Inhibiting Hormones. The possibility to have one would be when combined with Persistent Mullerian Duct Syndrome, or an entirely different condition, or combined with chimerism or mosaicism.

PAIS grade 1-2 is hard to diagnose, but it exists.

[Michelle F]

To Sara,

Your welcome and many hugs back. Just get on with life. I don't think they have yet discovered everything there is to discover. I do hope that someday people will look back on us and say "can you believe that the medical professionals of the day didn't have any answers and let those people suffer so badly?"

about the only thing that's worse is the way non-medical people can treat us too!

Chelle

Posted on: January 20, 2008, 07:50:36 PMTo Schala,

Let's remember Sweyer's syndrome too, not to mention whatever the heck they come up with next year that "didn't exist" before that.

All that really matters is that this stuff can seriously hamper our ability to function socially, emotionally and can therefore be medically defined as a disability. (If you don't beleive me look up the medical defenition of disability.

We have the right as human beings to do whatever it takes to allow us to reach our full potential, even if that means changing the way other people see us. It's better than walking with a limp, when there are treatments that can correct us.

And before someone blasts me for the comments about the DSM, there IS a category for those who are intersexed and are still considered trans. But what I meant is that it isn't in the formal definition of transsexualism. I found this quote that explains it better.

"The current edition of the Diagnostic and Statistical Manual of Mental Disorders has five criteria that must be met before a diagnosis of gender identity disorder (302.85) can be given:[2]

   1. There must be evidence of a strong and persistent cross-gender identification.
   2. This cross-gender identification must not merely be a desire for any perceived cultural advantages of being the other sex.
   3. There must also be evidence of persistent discomfort about one's assigned sex or a sense of inappropriateness in the gender role of that sex.
   4. The individual must not have a concurrent physical intersex condition (e.g., androgen insensitivity syndrome or congenital adrenal hyperplasia).
   5. There must be evidence of clinically significant distress or impairment in social, occupational, or other important areas of functioning.

The DSM-IV also provides a code for gender disorders that did not fall into these criteria. This diagnosis of Gender Identity Disorder Not Otherwise Specified (GIDNOS, 302.6) is similar to other "NOS" diagnoses, and can be given for, for example:[3]

   1. Intersex conditions (e.g., androgen insensitivity syndrome or congenital adrenal hyperplasia) and accompanying gender dysphoria
   2. Transient, stress-related cross-dressing behavior
   3. Persistent preoccupation with castration or penectomy without a desire to acquire the sex characteristics of the other sex, which is known as skoptic syndrome"

hope that clears up any misconceptions before they begin

Hugs
Chelle

[Sarah]

Well that's interesting.
And we pay shrinks hundreds of dollars an hour for that?
I can do that.
It's a checklist.
All you have to do is ask the interviewie competent questions with regard to those areas on the checklist and there! Presto! you have a diagnosis.

What crap. They have to interview us for three months in the US and for like years in the UK? What fraud. That is crap. That is some kind of money making scheme if ever I heard one.
Thanks a Lot for posting that.
I didn't know that.
That is realy rediculous.
I can't believe they charge that much for somthing like that.
'precieate it.
That was realy informative.
Thank you. So much. For that and all your other help!

Sara

[Rachael]

its not just a checklist.... you realise what harm the trans community does to the diagnosis process? telling people how to get past therapists, they need longer to talk to paitents to satisfy themselves that they are dealing with true feelings, not whim, and fantisy... they take a long time because it is THIER ass on the line if they get it wrong...
R

[Schala]

its not just a checklist.... you realise what harm the trans community does to the diagnosis process? telling people how to get past therapists, they need longer to talk to paitents to satisfy themselves that they are dealing with true feelings, not whim, and fantisy... they take a long time because it is THIER ass on the line if they get it wrong...
R

You're suggesting that CAMH's 1 year RLE for hormones and NHS extremely deficient systems are bad because they let people off easy, or because they 'really' want to know if their patients are not in fantasy...or maybe they reduce waiting lists faster by suicide and natural deaths than by actually doing their job.

[Rachael]

well i was going on about therapists with a genunine interest in getting it right, ie, private ones!
the NHS really doesnt care.... sadly.
R

[Berliegh]

well i was going on about therapists with a genunine interest in getting it right, ie, private ones!
the NHS really doesnt care.... sadly.
R

I agree and NHS gender Psychiatrists would not have an interest in you if they knew you were Intersexed. They would say you are no longer under their protocol and are not transsexual, therefor it's not their business and it means you could get expelled from their clinic. To access my own genetic testing I had to go and plead with various people outside of the NHS gender clinic system.

[Terra]

So here is something, what about periods? I was told that having some kind of 'period' might be a sign of IS. That and breast growth. However, I know that gynomastia is a way for male children to develop breasts.

I grew up with 'periods'. I had once a month wild mood swings and sudden depression. Once a year it got REAL bad. I also had slight breast growth long before HRT, and a low T count. I think 300 is bottom for males, I had 333 when I was tested prior to HRT.

*Shrugs* Not sure I would want to know, but can these be possible signs of IS?

[Rachael]

300 is averageish iirc.... and gynocamasita IS the only way for males to get breasts!

periods are a grey area, they can be phantom, or other things, and most of the period PAIN and feelings are regarding the uterus lining... if you got bad pains, for years, youd likely be dead from hemeraging....
R >

[Terra]

300 is averageish iirc.... and gynocamasita IS the only way for males to get breasts!

periods are a grey area, they can be phantom, or other things, and most of the period PAIN and feelings are regarding the uterus lining... if you got bad pains, for years, youd likely be dead from hemeraging....
R >

No pain, but did get bloated feelings. But I still get these periods, but they are more pronounced now.

As for gynocamastia, usually the breasts go away on their own. Mine did not.

[Rachael]

im not going to say you are imagining it, but the bloating is part of the uterus lining separating, and you would be permanently bloated, as the blood has nowhere to go..., if youve had them as long as you claim.
R

[Terra]

im not going to say you are imagining it, but the bloating is part of the uterus lining separating, and you would be permanently bloated, as the blood has nowhere to go..., if youve had them as long as you claim.
R

...Well since i'm not septic, then I doubt that is it. Guess the easiest thing to do is just talk to my doc and see what he thinks.

[pebbles]

You look for justification because you want to believe that it's not just you and your heart begin silly. This is because so many make out TS is something made up.
You want to find definitive proof and objectification for the pain you suffer.

I'd look at my genome but as a studying biologist I'm pretty sure I wouldn't find what I was looking for. There might or might not be a TS Gene... If it dose exist we don't know where it is.

Only proof for such a gene is in the implication that TS Traits have been observed in a few cases to be permissible down generations. And that's vague.

[Schala]

You look for justification because you want to believe that it's not just you and your heart begin silly. This is because so many make out TS is something made up.
You want to find definitive proof and objectification for the pain you suffer.

I'd look at my genome but as a studying biologist I'm pretty sure I wouldn't find what I was looking for. There might or might not be a TS Gene... If it dose exist we don't know where it is.

Only proof for such a gene is in the implication that TS Traits have been observed in a few cases to be permissible down generations. And that's vague.

The genetic possibility, is that it always existed through all time periods (since humans came to, just like homosexuality.

and gynecomastia is a stigmatizing terms used for "female-type" breast growth in a phenotypic or legal male - I just call it that: breast growth

And breast growth, infertility, periods, surely may be signs of IS (rather obvious one for the breasts), but far from the only signs. It is because doctors don't bother even trying to diagnose unless it's obvious. Otherwise they'll deny it like their life depended on it. If you really really want to know, you need to find the right doctor, and to know a damn lot (or research it) about your symptoms and tests. They generally won't do that for you. Sometimes out of ignorance, many times out of dismissal and denial.

There are false-positives, yes, but to dismiss all as false-positive ultimately hurts the real cases. Like DV shelters (and society, courts, police forces, society in general) dismiss the possibility of male victims or female on male violence.

[Rachael]

stigmatizing? um, its a medical term, female breast growth... men while they maintain the same ability to grow the structure that is the mamary gland, and maintain it undeveloped, males being a mutation of female genetically, hence the nipples... amongst other things. so its hardly a stigma... its a fact.
Men dont have breasts
breasts are a female thing to have
so gynocamastia is female growth on a male, simple as, i cant see anything hurtful or offensive, most people dont even care...
The medical language is latin, thats simply descriptive of the condition.
why the drama?
Its funny... my gp was only too willing to give me a Karyotype test he was stumped by my abnormally low testosterone, so i suggested the test, he just went 'yeah ok' and ran it... *shrugs*

R >

[Schala]

My doc suggested a karyotype when he 'decided' I looked a bit XXY in his eyes (a generalist). I didn't suggest it to him, and in fact researched intersex after that.

The result came back, as tested on 2 cells (a very low sample size), 46,XY. Not really surprising (as I didn't think I was XXY, besides the lack of development I don't fit many of its criterias).

I mentioned AIS and you know what he said? You can't be intersex, since you have XY chromosomes (who is affected by AIS you think?). I pushed a bit more, and he went about how my having a "female soul" is what made me undeveloped and feminine-looking. You know, that's real scientific.

Most other docs I saw were almost unanymous - if you don't have very small testes (like XXY), or big breast growth prior to HRT (and even then...some deny it), they'll think you're delusional in a lot of cases...how is that supposed to help?