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I need to talk to someone

Started by Amoré, May 14, 2019, 04:29:33 AM

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F_P_M

I'm pretty sure i'm grasping at straws too with it, but I did read that PCOS which I have might be considered a sort of intersex condition and it brought me a degree of peace.

Certainly my body doesn't behave in the way it should. I've always said it's terrible at being female, much like my brain is.
It's like I have all the equipment but the actual programming is totally wrong.

I have a surprisingly small arm angle actually, considering how wide my hips are. Which is odd. Huh, go figure.

I was reading something about hyperplasia which sounded wierdly familiar but again, im probably just grasping at straws to understand WHY I am how I am.

I had my genes tested at one point by a doctor who then never explained WHY. It was pretty wierd and I only got told it was "xx" and that was all I got told. So wierd that she got so cagey about it. I mean, come on, it's MY genes you crazy lady.
I wonder if they're in my medical record and I could take a look... i'm not sure how much depth they went into beyond just chromosome typing though. But the fact my specialist was all "let's test your chromosomes" suggests she spotted something that made her suspicious because they do NOT just hand out dna tests on the NHS all willy nilly.
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Amoré

There is sometimes some funny moments like telling people I am transgender then they are like you are going to become a guy. I am like noooo I was a guy. They look at me all surprised and baffled. You can see their brain twisting and fizzling out and is about to burn out.  >:-)

So maybe there is some method behind this madness of the road of self discovery.


Excuse me for living
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F_P_M

Lol, that's the dream right there. To pass so well and be so thoroughly your correct gender that people get confused and think you're going to transition when you already did hah.

I doubt i'll ever achieve that, but hey, i'll take what I can get.

live that dream!
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Linde

Quote from: Lexxi on May 23, 2019, 11:14:02 AM
Linde,

Your answers continually impress me. When you say something I take it as gospel.

For almost my entire life I've known that I was born in the wrong body. As I got older and started doing some research, I learned about people who are born intersex, I had it fixed in my mind that that's what was wrong with me. Then I researched it a little bit and realized that couldn't possibly be the truth.

However, after your post about the hands being far away from the body like you showed in the picture, I got up and measured the distance for mine. It's almost 11 inches. Both of my ring fingers are longer than my index fingers though. Not by much, but they are longer.

Doing the measuring thing with my arms ended up sending me on another research fest, and it's possible that I found an answer. What I discovered is in the intersex spectrum I believe. It's called Mild androgen insensitivity syndrome. I have a lot of the symptoms that were indicated in the Wikipedia page for the syndrome. The only marker I missed was having a high voice. My voice is very deep. The only way I would ever be certain if that's what I have or not though is if I had my genetics tested, and I can't really afford that.

All of us want to be able to explain what makes us different. This could be it for me...or maybe not...I could just be grasping at straws too.

Lexxi
Thank you for the compliment Lexxi.  A certain amount of wisdom comes with age, and the other part comes from having made the living in medical stuff.

All the intersex stuff can be fully mixed up.  I am part Klinefelter (XXY), but I also have some androgen insensitive syndrome stuff inside me, and several other mutations.  Nothing in human biology is clear cut and black and white.

I almost feel that at the end of a creation day the upper being had a human body shell left and left over chromosomes from all kinds of people, and they took those chromosomes and threw them into the empty body, and at the end decided that this should be my body!  Maybe, the empty body of the next production run of humans was yours?

My body certainly was short changed on testosterone, because I never developed any secondary male sex characteristics.  But I also started puberty with the age of about 1 and never really finished it.  I have a semi high voice (lower range of the female frequency spectrum, as my natural voice), but yet I was 6' 1" tall, which means, a partly feminine looking, tall guy with a high voice!

Have you looked into this listing http://www.isna.org/faq/conditions  ?
Remember, you can have multiple conditions of those listed, or you could have a new, never really charted mutation!  They did not make a standard for intersex people, when it was decided that we should be some of the production runs!

It is OK to try to find out what funny body we have to deal with, I am still discovering little things that are know mutations, and of which I thought it was just normal  Green eyes is a mutation, there seem to be a few less people with green eyes than there are red haired people!
Not having wisdom teeth (not at all, not even any plans for them), is a mutation that was discovered in 2017, and I have it (I like that mutation), not being able to metabolize opioides (means I can't get high on them, but they don't work for me as pain killers), is another one I have, and I bet there are many more.

As you said, you can find out only if you are tested, you should talk with your doc, because some mutations might need to medically addressed to prevent later problems.

Good luck for you to find out who and what you are!
Linde
02/22/2019 bi-lateral orchiectomy






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Linde

Quote from: F_P_M on May 23, 2019, 11:58:25 AM
I'm pretty sure i'm grasping at straws too with it, but I did read that PCOS which I have might be considered a sort of intersex condition and it brought me a degree of peace.

Certainly my body doesn't behave in the way it should. I've always said it's terrible at being female, much like my brain is.
It's like I have all the equipment but the actual programming is totally wrong.

I have a surprisingly small arm angle actually, considering how wide my hips are. Which is odd. Huh, go figure.

I was reading something about hyperplasia which sounded wierdly familiar but again, im probably just grasping at straws to understand WHY I am how I am.

I had my genes tested at one point by a doctor who then never explained WHY. It was pretty wierd and I only got told it was "xx" and that was all I got told. So wierd that she got so cagey about it. I mean, come on, it's MY genes you crazy lady.
I wonder if they're in my medical record and I could take a look... i'm not sure how much depth they went into beyond just chromosome typing though. But the fact my specialist was all "let's test your chromosomes" suggests she spotted something that made her suspicious because they do NOT just hand out dna tests on the NHS all willy nilly.
As I wrote above, the map for intersex s not finally written yet, new variations can come up with every new born baby!
I bet they did with you Karyotype Testing, and that brought up the XX chromosomes.  But there are many versions of intersex that cannot be detected with Karyotyp testing (androgen insensitive syndrome is a well know one).  Many of those can only be identified with a thorough genome analysis, and that is very expensive and involved.  My conditions were discovered this way, but I am a member of the global genome mapping program.  There might be light at the end of the intersex discovery tunnel, though.  I am a test subject of a test series to find out if some or several of my conditions could be discovered with a rather cheap swap test (all those gene tests one can have done, are similar).  If they can find indicators in my swap results that point to conditions I have, the test analysis could be fine tuned and simple swap test could find quite a few intersex conditions in people.  Swap tests are cheap, and every better lab can analyse them once they know for what to look out for.
So, stand by folks, the solution might to be near for you to find out more about your body!
02/22/2019 bi-lateral orchiectomy






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Lexxi

Hi Linde,

You're quite welcome! Yes I've done a little bit of snooping around on that site. I didn't know that green eyes were a mutation though. I have green eyes and really like them. I like them because not only are they pretty, but they're pretty rare too. Well now I know I have at least one mutation in my body. lol

Thanks for the info,

Lexxi
Finally started the process of becoming who I really am on the inside! 5/20/19
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Linde

Quote from: Lexxi on May 23, 2019, 07:33:44 PM
Hi Linde,

You're quite welcome! Yes I've done a little bit of snooping around on that site. I didn't know that green eyes were a mutation though. I have green eyes and really like them. I like them because not only are they pretty, but they're pretty rare too. Well now I know I have at least one mutation in my body. lol

Thanks for the info,

Lexxi
See, here we go, both of us have green eyes, who knows what else you find out!
02/22/2019 bi-lateral orchiectomy






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Amoré

I can't really say green eyes is a mutation as my siblings and my father and mother have green eyes.


Excuse me for living
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F_P_M

I have some wierd mutations.

In my family hammer toes are common, we're born with them. The last knuckle of the toe appears to be fused so they don't actually straighten at all, meaning curly toes lol. I have hairy curly toes and it's very funny.

I'm allergic to just about everything, so is my father. FUN.

I don't produce enough SHBG which means that while my testosterone levels are very low, it's almost all free T. Even so, that doesn't explain the virilisation which my specialist thinks is just a genetic quirk. I have severe hiristism apparently (particularly on the lower body.) which is far beyond what they'd expect with T levels, even free T levels as low as mine.

I also don't produce much progesterone AT ALL. That's estrogen dominance caused by PCOS which is they think a genetic abnormality that messes up your pituitary gland and makes it respond strangely to certain hormones like insulin. But i'm not a typical PCOS person, my hormone levels don't quite match the standard criteria (T is too low for example) but it's the closest approximation they have to what's wrong with me so that's what they roll with.

I have natural blonde streaks in my hair which is another interesting mutation and my hairdressers dont' believe me it's natural because apparently the streaks are VERY obvious and VERY uniform. Wiiiierd.

I have a remnant of the Wolfian duct system that never fully dissolved as well. Which is interesting. My sister has a septated uterus so our theory is that my mother simply doesn't produce adequate quantities of the hormones required to get normal development in utero.

I remember when i hit puberty, which was early (I was 10) it came in sort of a double whammy. I developed female traits like breasts and curves and periods but I also started to develop a lot of body hair including facial hair, had really bad problems with excessive sweating (my father suffers this as well) and down below swelled... oddly. Ahem. tmi maybe but man, that labia does NOT look normal.
My voice is also fairly deep for a woman, or at least extremely rangy. But that said my mother has a very deep voice too. We're both tenors when we sing which is awesome.

I'm remarkably short, but that seems to be my father's side of the family again. He's 5'8 I think but his father was only 5'6 and my male cousins are about that tall too. I'm 5'2", I stopped growing at 12 and that was that. My friends who knew me as a kid like to joke that I haven't actually aged since 12. Bah.

Premature tooth development is common in my family as well. I had 3 teeth at three months old, I got my wisdom teeth between 12 and 14. But because i'm approximately the size of a dang 12 year old my jaw isn't big enough for all the billions of teeth I have so they're really crooked and damaged. (seriously, my eldest son's friends are all taller than me! and they're 12!)

My own kids developed teeth crazy fast too. 2 or 3 months old they started getting teeth and then rapidly gained till they had a full mouth of them at 1.
as a result, yes, we all wean early.
My kids all weaned at 4 months old, as I believe did I. Naturally, baby led weaning.
We're precocious little things clearly lol.

I process drugs REALLY fast, as in, I take painkillers and within an hour they're out of my system.
If i'm given strong pain meds they kick in slow but they metabolise out far quicker than they should. Same happens with alchohol, I seem to have hyper efficient kidneys or something.
It's annoying though because you can only take most painkillers ever 3-4 hours and mine run out after an hour and then I have to wait, in pain. It's frustrating.
Like COME ON kidneys, come on!

Similarly, i'm hyper ultra sensitive to hormones. ALL hormones apparently.
I can't take estrogen, it'll literally kill me (it causes my blood pressure to spike even at microdoses), progesterone makes me pukey, Picotin nearly killed me by triggering contractions far far too severe for my body to cope with (I went into SHOCK and started throwing up and bleeding and shaking and yeah, it was terrible)

This is part of the reason I want to start T at a very low dose, because given my reactions to other hormones over hte years, i'm concerned it's not just feminine hormones my body freaks out over.
See my natural hormone levels are very very low, like ridiculously low.
Even my estrogen which is high for me and causing a lot of problems isn't actually abnormally high, it's well within female average, but it's too high for ME and that is making me very very very sick.
Quite often when they do a blood test most of my levels come back as less than 1 of whatever measurment they're using.
but they also fluctuate wildly with no rhyme or reason. It's like my body is frantically trying to find the correct balance and keeps trying different mixtures but none of them work.

My biochemistry is very very very broken. but also because I produce such low quantities of hormones normally, my body is also HYPER sensitive to even microdoses and that makes things... tricky.

Oh and my right and left hands are different sizes and shapes lol. It's so wierd.
I'm also ambidexterous like my uncle. Which is cool.

And i'm hyper mobile according to my osteopath. Predominantly in the legs and hips. It means I can twist my leg around and tuck it under my rib without any pain and it freaks people out. I can do freaky things with my legs hahah. This is a problem though because it means i've got a messed up hip. I have too much relaxin in my system or something, and getting pregnant causes MORE relaxin to pump into you so my hips uh.. well they separated. One side of my pelvis went one way, the other side went the other, my leg popped out the socket repeatedly and it's left a lot of damage specifically on one side that's worn the socket down and means my hip pops out periodically and all the muscles clamp down to keep it in place and then I can't walk. *sigh*
hypermobility isn't that fun. Sure it's a fun party trick but it increases a lot of problems in later life. It's quite likely i'll need a hip replacement in 20 years time.
Dang.

Wierdly though i'm only hypermobile in my lower body. I can't twist my arms in strange ways so easily.

Oh and I have Lodosis of the spine which is apparently congenital.
It looks really wierd. Doesn't hurt or anything, just looks wierd. But i've had it as long as I can remember. This very very curved spine that means my lower body swings back like a heavy bottomed S.


re: eyes. Wierdly when I had kids of course we assumed they'd end up with black eyes like me. Husband is blue eyed and there was a chance I carried a blue gene from either parent (as my dad has a blue eyed mother and my sister from my mother is blue eyed so she clearly carries a blue gene) but what we did NOT expect was that all three kids would end up hazel eyed!
What?

Only hazel eyed relative I know is my mother's father. Middle kid has almost exactly the same eye colour, this bluish greyish green. The other two have brown hazel, meaning they look khaki coloured most of the time. A greeny brown colour like agate.
And i'm like "but.. how!??"

because my eyes are literally BLACK, they're such a dark brown you can barely see my pupils. These I inherited from my father and grandfather. (and are unusual in someone of my ethnicity so mmm. Interesting)
husband's are pure blue (both his parents have blue eyes).
And yet the children are ALL hazel eyed and we haven't a clue how that even happens. I must carry a hazel gene but man, that's just weird.

Also one of them has dead straight hair, also wierd because I have curly hair and husband has wavy hair. Where the hell did straight hair come from!??

Genetics are so wierd.

I admit i'm suuuuper curious about my genome. I also really want to see an xray of my freaky toes to see quite HOW this deformity actually works because it's super bizarre.
I mean I barely even have a little toe nail due to this deformity. I should take a picture hahaha, feet shouldn't look like this.
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Amoré

F_P_M you make my problems look like a walk in the park. ;D

All the best too you.

Maybe you are a chimera.



Excuse me for living
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F_P_M

haha nah, we all have our own issues and crosses we gotta bear I suppose.
At least I have a health system that's free.

I hope you do find an answer to what's going on with you.

Whoo Chimera! Can I breathe fire? *being ridiculous* that'd be so cool.
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Linde

Quote from: Amoré on May 24, 2019, 02:36:47 AM
I can't really say green eyes is a mutation as my siblings and my father and mother have green eyes.
No matter what, green eyes are considered to be a mutation.  There are a little less people with green eyes around , than there are people with red hair, which is also a mutation.
It can very well be that your father passed the mutation on to you.
The standard color of the human eye is brown, all other colors are  mutations, some are more common than the others.  Green and blue eyes are rather rare.
02/22/2019 bi-lateral orchiectomy






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F_P_M

Doesn't red hair come from neanderthal genes?
along with hayfever.

Thanks neanderthal ancestors! lol.

I mean technically pale skin, lactose tolerance and pale eyes are all mutations as they wouldn't have existed in the original humans coming out of africa.
lactose tolerance is actually surprisingly rare globally, it's just common in white people. Which I find facinating.

Hazel is a mutation too, something to do with refractive quality of the iris?
which is why they change colour.

Human evolution is really interesting I think.
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Linde

Quote from: F_P_M on May 24, 2019, 11:45:55 AM
Doesn't red hair come from neanderthal genes?
along with hayfever.

Thanks neanderthal ancestors! lol.

I mean technically pale skin, lactose tolerance and pale eyes are all mutations as they wouldn't have existed in the original humans coming out of africa.
lactose tolerance is actually surprisingly rare globally, it's just common in white people. Which I find facinating.

Hazel is a mutation too, something to do with refractive quality of the iris?
which is why they change colour.

Human evolution is really interesting I think.
I don't know with the neanderthal thing.  I was born and raised about 30 miles away from THAT neanderthal, but red haired people were not very common around home.  Of cause, all northern Europeans have a certain amount of neanderthal genes in our blood (darn fraternization).
But lactose tolerance is really something.  All mammals bite their offspring away when the time for milk is done, and they loose the tolerance for milk (see you cats and dogs), while we continue to feed our kids with milk.  It is almost ridiculous here in America, where you can see adults ordering milk as beverage in restaurants to have with their food.

Well, evolution is based on mutation, a trial and error system.  Those mutations that are good make the person to survive and pass them on.
Most of the stuff I seem to have is more on the error side, and I am glad that my son seems not to have gotten any of them!
02/22/2019 bi-lateral orchiectomy






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F_P_M

From what I remember of human evolution in archaeology (yeah I studied archaeology okay? lol) northern europeans developed lactose tolerance as a way to survive as they headed further north. There was less to eat so they had to make do with what they could access, a big one being goats milk from their herds. Being able to drink said milk without getting super sick was an evolutionary advantage and as a result ended up a dominant trait as those individuals survived to have kids.

What's interesting about milk production in humans, and I mean I assume this happens in other animals too is that you actually produce "weaning milk". It stops being sweet and becomes more and more savory and unpalletable in an attempt to 1: coax the infant toward solid foods that taste more similar to that and 2: to discourage them from drinking it as it's no longer as pleasant to drink.
Also fun thing about human milk, if you eat chillis it becomes spicy! ahahahah, it's SO FUNNY. The theory is this is to acclimatise the infant to the adult diet. But spicy milk is genuinely hilarious to me. It still tastes like milk but it's spicy, sweet but spicy. FUNNY. Poor babies.

As for Neanderthals, there's actually evidence there was at least 1 other, if not a couple of other human subspecies around at the same time too. So anatomically modern humans very much are a hybrid of several subspecies who were close enough to form viable offspring. We didn't just bonk the neanderthals, we bonked anything that looked close enough ahahahah.
Oh humanity.

What is interesting is that yeah, sometimes things that are detrimental but not detrimental enough to kill you end up passed on for centuries. Like hayfever. It's a disadvantage for sure, but not enough of one to stop those afflicted from reproducing and so it remains.

I remember reading that the theory behind why PCOS, an arguably very bad genetic defect exists in 10% of the population is because women who have it are subfertile but not totally infertile so in times of famine the fact they process fat and such differently means they're generally carrying more weight before the famine hits so survive the famine where the skinny fertile women either die of malnutrition or become utterly infertile due to malnourishment. Meanwhile with women with PCOS as their sugar and insulin levels in their blood drop and their weight drops, they start to ovulate. Not regularly sure, but enough that they have a better chance of getting knocked up than the malnourished women. So then they have babies who carry that defective gene.
Also pcos effects men but doesn't show up in them till later life because they haven't got a regular monthly cycle to disrupt and it doesn't mess up their fertility. So all those brothers and uncles etc of the pcos woman go on to have kids who carry the gene too. and they never know till they either have daughters or they reach older age and develop heart disease, diabetes and hypertension.

You never know you have it till you become diabetic. Which is pretty scary.

Now that said, as I mentioned, my PCOS doesn't really manifest like standard PCOS and there is the possibility it actually isn't pcos at all. Apparently CAS can emulate PCOS quite effectively as well but both of them are characterised by high androgen levels, which I do not have.
Maybe i'm just super special lol.


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Amoré

Shame F_P_M it must suck being super sensitive to hormones.

Me on the other hand is not that sensitive. They had to give me an implant after being baffled of being on two E patches and an oral estrogen and still had low E.

I have no T but E is still low other times my E is high again so it goes up and down.

I had High E for a male though. So it is if something is regulating the amount of E in my body.

We are planning on seeing an endo to examine me seeing as the doc did such a crap job and to see what is really going on she works with intersex patients.

I don't think judging by that I managed to have a child there is more than what I bargained for because what is the chance of having more in that situation as far as I know it can turn into one or the other or something in between. But having full two sets it is highly unlikely it would be then like having four arms.


Excuse me for living
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