Possibley Intersex

[Guest mr_marc]

It's like being back at sqaure one to be honest.

I dont know what to think,

and i dont know any one intersex.

I went the doctors on friday thinking, it was something else. And i went away with getting told that, going away more of a man than i thought.

On one hand, its a good thing on the other. I feel so much more isolated, especially after what some one said. Thought i dont think they intended it to come across that way but it still really sucked lol.

Right now, i just want some one to talk to about it. Even if it is a different kind.

I got told, i could have. One testical and one ovary instead of two ovaries.

Im getting tested on tuesday, not looking forward to it.

Right now, i just...need some one to talk too, to explain it too me.

I dont wanna read up on it, since i want to know experiences not guesses.

[Guest CharliTo]

*hug*

in actuality, it's like 1 in every 100 people I think? actually has some form of intersex conditions. The only thing is that a good portion of people don't know about it unless they get examined specifically for the conditions.

Hope you find out more about yourself after this...*hug*

[Guest mr_marc]

Actually went in for something else relating to hormones. so if any male hormones get detected.

I'll be getting an ultra sound to see whats going on in there.

Mine could be having on ovary one testical.

Which i dont think is too serious, im just hoping it wont interfeer with transition D=

[Guest Keiichi-kun]

Try to think positively If you are intesex it doesn't change anything. It just makes you a little different is all. I bet there are plenty of intersex people who don't even know because they never needed to get tested for it. And also it's not everyone you run into will know about this condition, you would only have to tell people you want to.

[Guest My_Genesis]

well this has certainly inspired me to get tested

I've been thinking about it for a long time, i figure with the odds of being FTM I have the same if not better odds that I'm actually intersexed. Although in my case I'd be ecstatic if I was told something like what you were told because for it to be a physical anomoly and not just a mental/neurological one just seems to make it SO much easier....esp. when you're trying to explain things to people...

If you don't mind me asking...what made you want to get tested for male hormone levels and all that in the first place? Masculine characteristics/behaviors or anything like that?

[Guest mia 1]

Mr. Marc please read Middlesex by Marc Eugenides. Goggle it and go to the library of local book store. This is you inside the novel.Best to you.

[Guest Little Sara]

Although in my case I'd be ecstatic if I was told something like what you were told because for it to be a physical anomoly and not just a mental/neurological one just seems to make it SO much easier....esp. when you're trying to explain things to people...

Whenever I tell people I suspect I may have AIS, unless they know about AIS, they go "What??" with big ??? in their face. Even if online it shows. Intersex condition, and they always think "Oh you got both genitals?" So yeah, it's not necessarily easier to explain it. You might have more acceptance from docs and maybe even the government (though some docs vehemently deny its possible that you could have an intersex condition, just because they say so), but people in general won't know what it is.

[Guest Elizabeth K]

At the risk of being repetative - I have posted this before

Intersex (a term which I find the 'intersex' don't like - they are trying to be defined as DSD - Disorders of Sexual Development)

Klinefelter Syndrome - occurs in 1 per 500 males but usually goes undetected (an XXY genetic person) - usually detected later in life

Hermaphrodite - extremely rare but I cannot find an occurance rate - apparent at birth

AIS (Androggen Insensitivity Syndrome) - 1/20,000 births - (feminization of the XY genetic person) - usually detected later in life

Turner's Syndrome - 1/2500 females - some case lead to masculinization of the XX genetic person - usually detected later in life

5ARD (five alpha-reductace Deficiency) Dominican Republic specific genetic disorder - 1/90 males - feminization of the XY genetic person

There are other conditions, but these seem to be the most common.

It seems in about 1/20,000 births the child's apparent birth gender cannot be determined at all - this is in addition to those that show both male and female.

[Guest Little Sara]

I'm member of an intersex community, and all of them without exception prefer intersex to DSD.

Much like I prefer trans woman to GID male or homosexual transsexual.

Those are terms the medical community wants to see applied to people who fits this definition, not exactly what they themselves want.

Most intersex people I know, while they don't see their condition as definitionely positive and beneficial, definitely do not see it as a Disorder.

Partial AIS of low grades can easily be overlooked. (Most never find out)

XXY syndrome is very often overlooked. (Some find out in their 60s)

Few conditions result in a detection rate that's even acceptable. Misdiagnosises occur often. Mistreatments even more often.

[Guest N. Jane]

If you find out you are IS, keep quiet about it. At least as TS there is a prescribed route to transition. If you are Intersex, that all goes to hell in a hand basket!

[Guest Little Sara]

If you find out you are IS, keep quiet about it. At least as TS there is a prescribed route to transition. If you are Intersex, that all goes to hell in a hand basket!

I told all my docs and most shrinks about it. None of them believed me. So it didn't screw anything. If it had screwed things up, I would have made a hell of a ruckus too.

[Guest My_Genesis]

At the risk of being repetative - I have posted this before

Intersex (a term which I find the 'intersex' don't like - they are trying to be defined as DSD - Disorders of Sexual Development)

Klinefelter Syndrome - occurs in 1 per 500 males but usually goes undetected (an XXY genetic person) - usually detected later in life

Hermaphrodite - extremely rare but I cannot find an occurance rate - apparent at birth

AIS (Androggen Insensitivity Syndrome) - 1/20,000 births - (feminization of the XY genetic person) - usually detected later in life

Turner's Syndrome - 1/2500 females - some case lead to masculinization of the XX genetic person - usually detected later in life

5ARD (five alpha-reductace Deficiency) Dominican Republic specific genetic disorder - 1/90 males - feminization of the XY genetic person

There are other conditions, but these seem to be the most common.

It seems in about 1/20,000 births the child's apparent birth gender cannot be determined at all - this is in addition to those that show both male and female.

see, by "later in life"...don't you mean puberty? i mean when i read about intersex stuff that's when a lot of the ones not discovered at birth are discovered..

that's what wouldn't make sense in my case. for me everything happened pretty normally, albeit a bit later and slower than normal. What makes me wonder is I have all the i guess you could say "symptoms" of most ftm's who are already on T, i have very strange cycles...like very sporadic and..uh, non-cyclic lately I really don't have much of a figure if any, i'm always hungry and always thinking about sex. lol.

well those are the main ones there re other little things here and there as well.

but yeah i just don't get it, i mean all the weirdest things started happening to me like..5-6 years after puberty.

lol.

[Guest Leigh]

<br />If you find out you are IS, keep quiet about it. At least as TS there is a prescribed route to transition. If you are Intersex, that all goes to hell in a hand basket!<br />

i'm curious, how did being IS mess up your transition? i was thinking of getting testes for AIS before starting on T... if you don't mind, i'd like to hear you story.

peace&love

[Guest Elizabeth K]

Well

Not to go into a lot of detail. my therapist says somthing about fitting a certian profile (she says my HRT reactions are too quick) and that the two that she had as clients, and who had the same reaction were discovered to be intersexed. She recommended I NOT get tested. It seems there are more issues for the intersexed to be reviewed for, and as I am already in transition, why worry.

Lizzy

[Guest Cody_T]

i'm curious, how did being IS mess up your transition? i was thinking of getting testes for AIS before starting on T... if you don't mind, i'd like to hear you story.

peace&love

Hey man,

I just wanted to mention that unless you haven't experienced menses yet, there's an amazingly strong chance you don't have AIS. And you *don't* want to have it, because it basically means that T won't work. I'd say unless you fit that criteria or get it suggested by a doctor, there's no point in the tests. Great freudian slip, btw

[Guest Little Sara]

see, by "later in life"...don't you mean puberty? i mean when i read about intersex stuff that's when a lot of the ones not discovered at birth are discovered..

that's what wouldn't make sense in my case. for me everything happened pretty normally, albeit a bit later and slower than normal. What makes me wonder is I have all the i guess you could say "symptoms" of most ftm's who are already on T, i have very strange cycles...like very sporadic and..uh, non-cyclic lately I really don't have much of a figure if any, i'm always hungry and always thinking about sex. lol.

well those are the main ones there re other little things here and there as well.

but yeah i just don't get it, i mean all the weirdest things started happening to me like..5-6 years after puberty.

lol.

Later in life can mean 20s, 30s, 40s, 50s, 60s, and usually not because it is looked for - a complete fluke.

The condition most likely for someone having higher androgens than normal, is Congenital Adrenal Hyperplasia. Not the only possible condition, but it does result in a certain degree of masculinization absent T injections. The founder of Organisation Intersex International (OII), has this condition. He was legally female at birth, too, transitioned later in life (as in, not in childhood).

You don't hear about those not being discovered do you? A very high percentage of people with intersex conditions never find out. And it's not entirely because family/parents won't tell their children - often, it's because the parents themselves have no clue about it.

Problems about being intersex as related to doctocs are 'stronger' if diagnosed at birth, as a child, or as a teenager. Because basically, decisions are made for you "in your best interest" (and its far from always really being so).

Other problems that can occur at any age:

-Being considered a curiosity by doctors, sometimes even exposed nude to med students as a freakshow.

-Hormonal decision strongly pushed by doctors, alternatives rarely if ever presented, dosages rarely discutable, and the weirdest of all: They don't need you to have 3 months of therapy to give it to you. That is, if you have XXY syndrome, and a male-looking phenotype (meaning genitals at birth), testosterone is the only solution pushed on you, and at FTM dosages, even though you have testes present. Try to get estrogen? You'll have to follow the trans girl route more often than not, unless your doc is particularly enlightened (rare enough). Try to know estrogen is even a possibility? Your doc certainly won't mention it even is a possibility, the doc will underscore possibilities of "making a man out of you", without any regards to what you actually want.

-The condition's existence is denied even in front of irrefutable or highly-suggestive evidence.

-Unnecessary surgical intervention - even on adults - to normalize someone, say remove their internal testes and call them cancerous ovaries, even if you didn't go for that. Even worst if your genitals are or were ambiguous.

[Guest Laura Jane]

Hi to Lizzy, et al...........

My geneticist claims that my IS is a one in 125,000 of live, apparently male births. I am a mosaic of XYY (sometimes called "superman" syndrome) and XXY (Klinefelters). I don't know if it means anything, but all the Y's are inverted (turned inside out) They said I should have not survived birth or should have been retard. I lived and have a 140 IQ with learning disability. I am much taller than would have been expected from my parentage. I peaked out at 6"6" at 280# when I was 30, but I am sterile, pear-shaped, have many times been incorrectly seen by gays as one of them while in drab, have long slender hands and limbs, never much muscle or body hair, gyconemastia all my life, but also have prominate nose and chin and browbone, and with a mid-toned voice.

In the last 26 of my 66 years, the anomolies in my spine allowed me to lose four inches in height, but it went to my feet....12C to 15EEEE. I also developed epilepsy, prostate tumor and now a lump on one breast. In the last 15 months I decided to lose weight and get my nuts together and I am at 234 aiming at 197 at the top end of my female body mass index. The intersex probably has little or nothing to do with the fact that I have always identified with girls and women and now grandmothers. The nine years of estro and spiro have given me a near female body, but I am trying very hard to be part time en femme and non-op for the sake of my diabled wife and many children (all adopted).

The geneticists saw me as the prize pig of the year and I thought at the time that this told me why I was TG all my life. But as I started to understand more of the lives of other TG's, I believe we are hard-wired as TG separate from being IS. But maybe not. I am open for discussion on this point as well as my mix of sex chromosomes.

I am also a little spiritual from my Catholic upbringing, with which I have little conflict, I believe that God makes no mistakes and that She gives us these little challenges in our lives to condition us for the real challenges, like kids and jobs and loss of self-actualization. We can be born with TG or cyctic fibrosis, mental retardation or the brain of a genius, but we all have to deal with what challenge She picked out of the hat for us to work on.

I am very grateful that we T-people are starting to find each other and whether we thank God or Al Gore for inventing the internet, it is a miracle. Take good care of yourselves and live all aspects of your lives.

.............Your Sister Among Unique Sisters, Laura Jane

[Guest Elizabeth K]

Being tested 4 September.

Lizzy

[Guest gwenthlian]

Although in my case I'd be ecstatic if I was told something like what you were told because for it to be a physical anomoly and not just a mental/neurological one just seems to make it SO much easier....esp. when you're trying to explain things to people...

I really can't agree more with this sentiment. The fact that people may find it just as hard to understand an intersexed condition as a gender identity condition really dosent matter, people hear the word medical and that changes things dramatically. In the minds of the uninformed it is now no longer a "lifestyle choice" it is a "medical condition" and as such requires sympathy and support as opposed to ridicule and anger. Its got to the stage that in a school in which there is a substantial population of homophobic people, I would not come out to any of them for fear of reprisals. If, as I suspect, I am XXY I likely would come out and perhaps start hormones. Im sure there would be just as many people who would take issue with that however in the eyes of the majority this would be discrimination and victimisation.

So anyway, I get my test done sometime in the next month and I know the result Im hoping for

[Guest N. Jane]

The problem with being IS and needing to "transition" is, as Little Sara said, the attitude doctors are likely to take - they feel they need to "help" you to conform to your assumed or assigned sex-at-birth and fix your mental/emotional problems by making you physiologically more normal (for your assigned sex), which is opposite to the direction you want to go.

Intersex conditions are usually detected at one of three times: at birth (ambiguous or incomplete genitalia), at puberty (failure to develop), in adulthood when infertility is suspected - the vast majority of Intersex conditions leave the person infertile.

As far as public perception, I don't think Intersex is any more accepted than trans, maybe even less so because it is less in the public eye.

[Guest Karen-1954]

I did not find out until I was in my 50's when I had a hernia repair surgery. The surgeon came in after the surgery and informed me that I had partially developed ovaries. That is when I got a lawyer and opened my childhood medical records and discovered that I had been given a couple of years of testosterone shots. So like many others, I found out in life due to a fluke.

[Guest SaraNetherlands]

I always wondered if I am intersexed and this thread triggers a reaction. I've been born with my testicles in my belly which had to be surgically put in the right place at age 8 with the option to have children and no damage would I want such: best interests in mind. They are just as well very small and are extremely painful to the touch. Even light touch results into me going flat like a board and losing every inch of strenght in all of my muscles, as if someone just punched me there. I grew a lot of feminine features such as a visible lack of laryngeal prominence, small breasts (but that might be because of obesity) and small hands and feet (shoe size 37,5, which translates to male: 5,5 and female: 7). Equally my voice stayed feminine and it is tiring to lower my voice.

[Guest nymphblossom]

The "DNA test" is called a karyotype classification. It is extremely expensive ($1000). My OBGYN was able to find a code so my insurance will cover it as part of treatment for a hyposexual disorder and is going to one when I see him after the holidays.

Blossom

[Guest nymphblossom]

My_Genesis wrote:

Although in my case I'd be ecstatic if I was told something like what you were told because for it to be a physical anomoly and not just a mental/neurological one just seems to make it SO much easier....esp. when you're trying to explain things to people...

gwenthlian wrote:

people hear the word medical and that changes things dramatically. In the minds of the uninformed it is now no longer a "lifestyle choice" it is a "medical condition" and as such requires sympathy and support as opposed to ridicule and anger.

I truly appreciate the explanation of how IS can complicate things for a transsexual, but my wife and I have an extremely difficult time accepting my transsexualism. It may not change a thing, but conclusively finding out that I am intersexed would be a Godsend in helping us cope.

Blossom

[Guest My_Genesis]

@Blossom,

It would also help in the case of finding future surgeries for us that are "true sex changes", where our tissue might already be compatible female or male-specific parts and we may not even know it...