testicular feminization syndrome, now know as PIAS?

[Anis789]

Hi all

This is my first thread on the AIS forum been posting on the meeting borad for a while now,

My name is Anis am 21 and from the Uk, I at 15 by a counsellor was told I have testicular feminization syndrome which is now know as PAIS so I am told my endo say intersex is very lose term n I can call myself intersex if it helps me, they say I have tissue androgen insenitvity, so am serching which intersex condtion i do have

I was born witha phallus fused with a liab, gyperspadus too, i had injection to increase phaulls growth so as to preform surgery, I have a micro pennis and produce a low sperm cpunt, my voice is high more like squeaky, I preduce very litle facial hair apart from my tash seems to get thicker through shaving it off, I think i may have Gynacamstia to but need to see a doctor first, i always felt embarasssed by my chest but now the twins n i are fine they are apart of my body and i respct my breasts now - i think

Complex: I have 3 bothes wh shar with me X-linked condtion two of which i think have Noonans as they have heart codntions and the other has an ichthyosis skin condtions, oh yeah i have 2 eye condtions that make up my visual impairment - fr the reason my 3 brothers and i have variying condtions diabilties it isn't lear cut what intersex i am!

Thanks for taking time to read my posts, I hope i find out if I am am PAIS

Anis x

[Anis789]

"Grade 3
(partial AIS with male phenotype)
decribes individuals with predominatly male phenotypes but with severe defective masculinization in utero, as evidence by perineal hypospadias and small penis with undescendent testicles and/or bifid scrotum. Includes individuals with Reifenstein syndrome."

I was born with a micro penis , i had undecebdi testcles, whats a utero? will lok it up too, hade hypospadius

"Grade 4
(partial AIS with ambigous phenotype)
describes individuals with ambigous phenotype, with severly limited masculinization evidenced by phallic structure that is indeterminate between a clitoris and penis, normally accompanied by urogential sinus with pernial orifice, labioscrotal folds with or without rugation and posterior fusion."

Born with Ambigous gentialia. pahluss fused libia - 'phallic structure that is indeterminate between a clitoris and penis,' 'labioscrotal folds'

So perhaps I wasBorn PAIS grade 4 and made into Grade 3

[miriam]

So perhaps I wasBorn PAIS grade 4 and made into Grade 3

In the firt post of thist thread you wrote:

...and produce a low sperm count

With PAIS grade 4 or 3 it would be very unlikely to have any sperm at all - and that's an understatement.

Some doctors still use the old name testicular feminization syndrome but mainly because they are still using the old books they bought when they started at medical school. ;) Please believe me when I say nobody here can tell you what kind of condition you have. You have to see a real expert for a diagnosis.

BTW, in the past many women where diagnosed as male pseudohermaphrodite. To be political correct this diagnosis was later changed into testicular feminization syndrome. I think it was around 1985 when the diagnosis was changed again: Androgen Insensitivity Syndrome. But many women with the diagnosis testicular feminization syndrome did not have a defect on the Androgen Receptor gene. For that reason quite a few people who think they have AIS (or testicular feminization syndrome) actually have another condition. In most cases expensive dna-testing is needed to find the correct diagnoses.

Groeten, Miriam

[Anis789]

Hmmm, if i have tissue androgen isneitivity doesn't that mean i have some AIS condtion? i am so confused thats all my endo will say, where do get an actual diganosis? Dotors say its just a label Anis but to me I would like to know, they all seem to think my intersex and vision link then thiers my brothers conditions, what if am not intersex at all but somebody born with ambigous gentilia? i feel like i am making prgresss in finding out what condtion but more n more information contardicts what i already know, thats not a knock at anyone

Have to push my endo to have me diagnosed once and for all,

thanks Miriam for your support

Anis x

[prince....ss?]

As you know I'm still looking for which condition I fit but most doctors are unwilling to be helpful.

Would this expensive DNA testing find a Dx for most of these intersex conditions or just a few. I would hate to force doctors to do the testing, pay gobs of money then find out nothing. This is why I was trying to rule out some of the more predominant conditions with the information from my medical records.

thanks

[miriam]

DNA testing is expensive and there is not just one test that can check for all the possible intersex conditions. Not to mention that there are also intersex condition that are not (yet) related to a specific gene mutation.

It's common to first look for the symptoms that are characteristic for a specific condition and after that to get a confirmation of the diagnosis with DNA testing.

With a new project called EuroDSD (http://www.euro-dsd.eu/) European research institutions work together to find out which genes are involved.

is an international European consortium dealing with scientific aspects of disorders of sex development (DSD). The consortium has placed a research proposal in the 7th Frame Work Programme of the European Commission and is currently negotiating funding after successful evaluation. This web-site will inform you about the progress of EuroDSD. We are looking forward to start scientific activities in spring 2008.

The project participants hypothesize that a stringent stepwise analysis of individuals with Disorders of Sex Development (DSD) will result in a systematic and reliable discovery of DSD-relevant biochemical, genetic and functional profiles. This will allow for the detection of new diagnostic markers, both in steroidogenesis as well as in genetics and it will provide the basis for explaining the natural course of these disorders. Characterization of the functional aspects of androgen action as the main basis for sex-related phenotype will improve the understanding of the pathophysiology of DSD utilizing novel models. This will allow for better decision-making in gender assignment and therapeutic approaches to DSD.

I think this project will make it easier to receive a diagnosis.

Groeten, Miriam

[prince....ss?]

All I need now is enough smarts to start rule out the "nope not that one's"

if any one would like to help me rule out things I would appreciate the help. I know we are not doctors but I feel we are more educated on the many conditions that present themselves.

[JOS]

Testing like that is FREE in the UK... you don't even need to see an "endo" you just have to request a referal to see a Genetics Councilor with your GP!

it will take a bit of time but they should be able to sort something.
Also, if your doctors won't tell you things in your own notes... request a copy! (that might cost you???) or better still change GP and get them to go through your notes with you?

It might help, it might not but it's worth thinking about!:-)

[roguekiwixxy]

it will take a bit of time but they should be able to sort something. Also, if your doctors won't tell you things in your own notes... request a copy! (that might cost you???)

Here ones medical notes are one's own personal property, so doctors 1, Can't keep secrets from their patients. 2, Can't make erroneous or even factual remarks of a personal nature not relevant to the patients medical care. 3, Can't refuse to hand over the entire medical file upon request.

[prince....ss?]

I have the records I just don't have the knowledge of the available symptoms for each condition. I have the basic stuff it's the more indepth stuff I have problems with

[JOS]

my advice to Anis might be applicable to you too Prince....ss?, maybe there are genetics councilors you could talk to.

Not to suggest you won't get help here but there will always be a limit to what people online can help with

e.g. 1) what you should make public on an open forum (you wouldn't give out your bank details... you don't want an identity theft!!!)

e.g. 2) if tests are incomplete or not done... no-one here can order further tests

e.g. 3) if what you have is rare, or complicated by other issues.... it might be that ALL your notes need to be reviewed as a whole!

e.g. 4) maybe I'm wrong... but I think in the past, established members have advised newbies to see their specialists in the first instance.

e.g. 5) you don't ACTUALLY KNOW anyone here.... not to be rude to any individual because I do loves ya all... but ultimately some people LIE... for a laugh... because they can!!!

That said, if I'd have been in your place, I would have leapt at Maria's offer... she could have glanced over your paper-work.... she seems to have physical contact with other's who might also have been able to help... plus she has an insiders guide to the health-care system. But after all your "click" accusations... she might not be so up for it now anyway!!

I know you don't want to spend loads of money on this, as you're basically happy??? but you might not be receiving the right level of care.
For instance, now I know about AIS, I can insist on regular bone density scans so that as soon as changes start to occur I know what to look for and can make immediate adjustments (at least more so than when I knew nothing)

This site is great... but nothing beats talking to a real person face to face... though obviously be careful about the whole stranger-danger stuff LOL :wink:

[prince....ss?]

Thanks JOS

That is great advice.

Well I agree I would have loved to show Maria my records for her thoughts...but one day she flipped a switch and decided that I was not worth even responding to. I'm not angry at Maria but I think she is at me...true I have not made that situation any better. For someone to have all this knowledge then out of the blue insinuate that I'm a posers does not help the situation any either. Not to be paranoid I do know that things have been said about me in the back room. so that is not helping either.

None the less it is she that refuses to talk. I would love to discuss what she hates about me. But that is up to her. I have been trying to resolve this issue but it's all one sided.

[JOS]

But (without wishing to sound mean) it's not "all about you"... did it occur to you that Maria may be having a hard time right now due to other issues??

read her posts... life doesn't seem to have been all smiles and laughs for her of late... then all this nonsense, is it any wonder if she may feel a little peeved?? (that's assuming she even does??)

... and no, I don't know this from "back-room whatevers"... I'm merely speculating. And yet despite this she's still here offering support!

Maybe that would be a more valuable use of time... support... rather than bickering.... just let it drop and remember you cant force someone to trust you, that comes with time... assuming one (not YOU... one!) is trust-worthy!! ;)

(quite aside from the fact that she may well have legitimate issues with you?? I don't know... I'm too lazy to read ALL of EVERYONES posts!!... but so what if she does, it's her choice how to deal with them... if they're unfounded I'm sure this will resolve itself given time!?)

well good luck with your choices... I hope they work out for you :regular_s

[prince....ss?]

I agree.

see that was easy:rolleyes:

[JOS]

Now I'm an evil Troll... going ON and ON and ON

hehehe... I mean hahaha LOL :wink_smil

and that concludes the series of lectures brought to you exclusively by JOS-the-patronising, I thank you!! :bis:

[melonade]

I agree.

see that was easy:rolleyes:

Mr Prince ... None of this has to do with some back room conspiracy launched by fraulein Maria. That's just your paranoid imagination talking. I posted against you because your life story as stated is even phonier than Zoe Brain's excuses for being transgendered. And everything you say based on your "life" is bad advice. You are the prince of lies, and you harm people with your disinformation. Your excuse of how you were "messed up" back then is no excuse at all, because you act very "messed up" now.

Flight aviation electronics specialist, eh? Prove it. Discuss basic electronic theory. The navy paid for your breast implants? I contacted someone who should know, and they have never ever paid for anyone's implants, even when wounded in battle. They would also have known you were not XX upon entrance even in 1979, and rejected you on that basis.

Your life story is about as true as Kira Treia's and Cheryl Chase's. In other words, not true at all.

[JOS]

Cheryl Chase founded ISNA didn't she???

Don't seem to be able to find the "faked it" bit?? :dunno:

[Dianne]

...Discuss basic electronic theory....

Shall we start with sub-atomic physics, quantum mechanics, or just jump straight into semiconductors, Fortier Transforms, and the other boring stuff?

(Sorry, couldn't resist! :doh: )

[fraulein_Maria]

[QUOTE=JOS;17333]Cheryl Chase founded ISNA didn't she???

Don't seem to be able to find the "faked it" bit?? :dunno:

>>> oh, ask Curtis @<hidden> OII. he wrote the expos'e :) or just go to OII. he posted all the details. <<<

[JOS]

No wonder everyone's reaction to DSD... I hadn't realized the full implications... TOTAL ELLIMINATION

written by Curtis E. Hinkle
This is what Alice Dreger has done:

1- DSD is now a genetic defect. (Intersex was not and she encouraged the medical community to replace intersex with DSD because it is more "precise". Yes, it is and we are the targets of that precision.

2- More and more DSD's will become detectable in utero and screened out of the population because the genetic name (based on the cause) will make this possible.

3) She is defending a eugenics proponent. Download his homosexual eugenics paper here.

4) DSD makes it totally legal and ethical to perform all types of normalisation procedures on children because legally a DISORDER can be treated without consent of the child - it is a genetic disorder and disability now, thanks to Alice Dreger.


http://www.alicedreger.blogspot.com/

sorry not the bit you were talking about... haven't found that yet :roll: I'll get there in the end :doh:

[prince....ss?]

Melonade...I have had a real shitty day...thank you but your post did give me a good laugh. Mr Prince... that is funny

Also thank you for your opinion of what you think of me... Now I have something to work with.

Just for you, how would you like me to prove to you what I say is true. I would send you emails but like I said personal information, I just don't photocopy and stick to bathroom walls.

Discussing electronic theory is lame and I don't know how much I remember..."A" school was a long time ago.

I do have my DD214 and my re-enlistment papers.

My Boobs thank you for mentioning my boobs. By the way they are very dangerous and I think they were one of the causes of my health issues and I just had them removed last year.

Call or look up Bethesda Navy Hospital. this is where they send the president when he gets sick...any way they have a plastic surgery department and they do boob jobs as well as face lifts for the generals wives. But I have the Navy records that include the implant serial numbers.

You are correct about the bowel thing I was messed up back then and jumped to some crazy uneducated conclusion. this is word for word.

"..., and anterior rectus sheath which was divided transverversally the length of the wound and flaps of the rectus sheath dissected upwards and downwards for suitable length."

I still don't know what that means but I do know I jumped to conclusions. then I forgot about it until you brought it up. so I officially retract that statement. but what did they do and what does that mean, and why did they need to do that?

That is Avaitation Electronics Tech "AT" then switched to Avation Antisubmarine Warfair Tech "AX" better advancement as an Ax at the time.

"And everything you say based on your "life" is bad advice You are the prince of lies, and you harm people with your disinformation"

I still don't understand this statement. Please give some examples.

I am just as amazed as you that the Navy did not catch my XY durring my entrance physical. I did not have boy parts so they must have assumed that I was XX.

I won't send you copy's of my records But I will to someone I trust...not much anyone could do with this information other than to prove they are intersex and not trans.

So any volunteers to be a third party verifier? I trust Peter:) but he may not be willing.

But if I lift my skirt Melonade...are you able to provide proof that your are who you say?

Gee then if Peter posted the results it would be like Moury Povich show with his your the daddy DNA test results.

Then I could be the first certified and verified at BLO...that would be cool.

Let me know ...who do you trust?

[roguekiwixxy]

......................

Hello Prince....ss?

Sorry, this quote has nothing to do with what I'm about to chat about.....oh nooooooo I'm in the wrong forum?

Woteva, have you noticed that a certain person is not posting right now?:happy45:

[fraulein_Maria]

[QUOTE=Dianne;17334]Shall we start with sub-atomic physics, quantum mechanics, or just jump straight into semiconductors, Fortier Transforms, and the other boring stuff?

(Sorry, couldn't resist! :doh: )

>>> you know, the recruiters wanted me to become an electronics spec. based on my ASVAB, but i wanted to be a med. tech. All my high school and college courses up until that point had been in the life sciences.

so what did they do? A1c Krasinski USAF LE spec. "law enforcement" which we all laughed about because of our "limited education". it was fun though.

glad to be out after all these years, though i worry they might call me up..... it would figure that the draft bill they pass for this damn war includes women to make it "fair" so that they can get enough support behind it.
It would make my brother happy. He'd like to have his "big" MP sister in iraq with him.... probably to get him out of bar fights! i can't tell you how many Marine/AF bar fights i've had to break up...
and always about the same dumb stuff... some drunk airman telling some drunk marine, that he's not as tough as he thinks he is... and of course this all has to be settled with fists... why can't they just have a REAL pissing contest? ;)

except we have world leaders no better trying to settle things with guns and bombs. with even less excuse it seems to me.

i was in NY for 9-11... i knew some of the people that died... including father Mychal Judge...

not in my name! not in the name of that wonderful man of peace! i cursed the wheel chair i was in at the time; i wanted to donate blood in the worst way! i couldn't, so i recruited everyone i could, to do so in my place.

this post obviously isn't about much of anything. I dropped my dose of prednisone when the weather cooled off to "less than heat wave" level because your not supposed to take so much over an extended period of time. Wish i had extra weaning down pacs... that would have made it easier. or a bottle of hydrocort. or simply 2 scrips for pred. the 20's that i break into quarters because its cheaper to buy it that way... and a bottle of 5's i could split into 2.5's, so i could go to 7.5, then to 5, instead of 10 to 5....

and Godde i wish Betsey or some other real CAH was here to talk about this with! but, i figured you gals here wouldn't mind because, naturally, when you step down too far too fast (even when you know its best for your bones) the hot flashes come.

or maybe its just menopause. not happy about that thought.

[prince....ss?]

I wanted to be an ADJ (jet mechanic) but they said I was too smart and would half to wait 2 years to enlist. I needed to get away from home at that point so I did the electronics thing.

[Anis789]

Reply to JOS

I've had the gentics involved but they could not find a gene on my X or Y that suggests the intersex condition, they ran the most expensive of test and found nothing! I plan to see them again and disscuss my brothers' condtions too, sad thing is coming from an Middle-Easten background I just know my entire extended family hide things - there must have been intersex in the family history there must why else me - I recall hearing of two counsins whom died back home in Pakistan, died or got rid off is the question? Back then intersex/middlesex people were seen as evil and got rid off i guess - a shame to the family, if so it hurts so much that these cusions girls are not spoken of they could be the missing link in discovering my intersex condition,

hmmmm

[Kailana]

My 121 GT score could of gotten me into nearly anything, but my color vision screwed me over on doing anything electrical or mechanical within the military. i am partial color blind, and that ruined my original plans on going into the Navy, as a nuclear propulsion tech. I had the science background the navy loves when it comes to technical carreers.

Oh and another thing so people understand the Military better. They only care about what you look like and if no serious medical issues are present they will let anyone in as long as they aren't criminals. The other big issue about military enlistment that some seem to question is medical records, but how in the world would the military know about intersexed conditions present in a person when those same medical records have been edited so that nothing unusual is left in them to cause or raise any red flags that a person is intersexed. And the only issues that are raised come up when the lab work that is done shows that something isn't quite right and the doctor then only asks if your gay? rather then if your intersexed, or they asked have you ever thought about a sex change? and you I responded Yes, and they still let you in cause they have some understanding that somethings not quite right, but there is no real reason to stop you from enlisting. The military needs us too, even if they do not know we are intersexed when we enlist, often enough they find out later while in service when other medical issues arise and whola, a intersexed True-Hermaphrodite is found, and guess what, I was still a military soldier, and no they weren't pushing me to get out. Fact is i server for another 2 1/2 years before finally finding out the exact reason why i am what I am.

[fraulein_Maria]

[QUOTE=JOS;17338]No wonder everyone's reaction to DSD... I hadn't realized the full implications... TOTAL ELLIMINATION

>>> absolutely.and if you think it can't happen, remember where you live....

the UK is very proud of the fact that it has virtually eliminated trisomy 21, AKA down's syndrome.

there's too many CAH's for them to get us all, but i am VERY afraid for AIS'ers...

so afraid, that i'd happily have one to preserve "your line" even if the thought of having another child didn't already appeal to me.

a world without AIS'ers in it would be a sorrowful and dreary place for me.

[Kailana]

but what I see is that the medical community has spent a lifetime trying to hide us, and there is no reason too. We are people too and perfectly capable of being who we are rather what we are.

Doctor's cannot get rid of us if they wanted too. There are way to many of us to do that. But they can try and keep on trying eventually everyone will come to understand that we have rights too, and no one should be held to standards that demean, demoralise, hide, shame, ridicule, abuse, neglect or force us to submit to what they think is right for us. Only we get to decide what we are, and no amount of coercion is ever gonna change how we see ourselves.

[prince....ss?]

great points you made in your last two posts. Once I was "fixed" I no longer had that "thing" just another almost normal girl.

[JOS]

'they' CAN just get rid of the next generation of "US"/IS.

If a couple gets tested, are found to have a tendency for genetic condition... they can be pre-screened.
when they get pregnant, the foetus can be "checked" and aborted.... or, they can pre-check and only get the "healthy" ones fertilized!!

but maybe I've misunderstood the concept of eugenics.

Oh and surely the whole point is that we are RARE.:thinking2
... and lets face it, not exactly a coherent group... we've all got different causes for our similar outcomes LOL

I have to say that despite being unable to bare my own children, I never before felt against a woman's right to choose... now though... mmm this could turn into a heated debate, I think I'll drop it now :wink:

[prince....ss?]

No debate!!! after this last week I wish I was asked if I wish to be aborted. Ill bet some here wish I was. But none the less don't know if given a choice I would choose to relive this life. Been kinda sucky...where is the reset button........... oh here it is :push:

[roguekiwixxy]

Oh and surely the whole point is that we are RARE.:thinking2



Nah, not true, we XXY's are COMMON we are so common we're dirt cheap! :aargh:

In the world wide population we're less than a drop in the ocean, in all the oceans and seas combined, but in the world of SCA's we're head and shoulders above the nearest rivals. We are Kings & Queens.

[fraulein_Maria]

[QUOTE=JOS;17447]'they' CAN just get rid of the next generation of "US"/IS.

>>> yes, they can. and if its one thing i know about human nature... if they can, they will. <<<

If a couple gets tested, are found to have a tendency for genetic condition... they can be pre-screened.
when they get pregnant, the foetus can be "checked" and aborted.... or, they can pre-check and only get the "healthy" ones fertilized!!

but maybe I've misunderstood the concept of eugenics.

>>> no, you haven't. <<<

Oh and surely the whole point is that we are RARE.:thinking2
... and lets face it, not exactly a coherent group... we've all got different causes for our similar outcomes

>>> that's what will make it easy for them to divide an conquer.

I am not going to look the other way when they come first for you and your kind JOS, thinking that they will never come for me because there are more of us CAH's.

they start with the weakest/smallest populations, until they are gone before they move on... the nazi's killed the "useless eaters" first. the world did not protest. they have quietly virtually eliminated trisomy 21 in the UK, via passive eugenics....... "useless eaters" though your countrymen would never be so impolite to call them that... they've just very quietly... made them go away.... permanently. <<<

I have to say that despite being unable to bare my own children, I never before felt against a woman's right to choose...

>>> technically, i'm not either. But who is doing the choosing when the doctors say things like....

"Oh, your AIS child will never be a man, never have children of his own, you can spare that child a lifetime of suffering from surgery and steroid dependency..."

and husband/boyfriends say things like...

"there ain't no way i'm gonna pay for you being too stupid to remember to take a pill."

so its not really a woman's right to choose... but a man's right to skip out on his responsibility, and a doctor's right to direct the future according to his prejudices. <<<