Topic: Self-Identifying PAIS?

[ParkerTalks]

Hello,

How exactly does one see whether their genitals are "fully feminized" or "fully masculinized" without going to a doctor about it?
I can only find diagram or drawing scales, and while that's somewhat useful, they're drawn from an angle that is not anywhere close to how one sees their own genitalia. There don't seem to be any actual picture scales available, which is what would really be the most helpful.

I have wondered for years what exactly biology texts mean by "inner" and "outer" labia, and it's occurred to me that maybe the reason I don't understand what they're talking about is because mine are merged.
Also like, what counts as an "enlarged clitoris" ?? that's so vague! I know mine is on the larger side, but I don't know if it's "enlarged", because I don't know what that means, or how to tell the clitoris from the clitoral hood.

I think it's a possibility that I fall into category 5 on the quigley scale, but without pictures, I can't be conclusive. What does an inner labia even look like? What would I be looking for?? Where would I be looking?!

I am trans (FTM), and I know that PAIS can be linked to gender dysphoria. I can't go to a doctor to speak to them about this, because it would make me so dysphoric I'd either throw up or pass out or both to have someone examine my genitals. I will be starting HRT in the next few months, and I know that if I do have PAIS, it's something that needs to be addressed with my endocrinologist.

Help! 

[Dena]

I am not a good one to ask about this because I have only seen my own however that is a feature of the body that varies widely  from person to person. Even in males no two bottoms look the same. To get an idea what you might be facing, google "Wall of Vaginas". Sorry but a direct link would be a TOS violation however it's a work of art that shows a number of woman bottoms. I think if you want a better option you would have to ask a gynecologist if there is anything abnormal about your bottom structure.

[ParkerTalks]

I am not a good one to ask about this because I have only seen my own however that is a feature of the body that varies widely  from person to person. Even in males no two bottoms look the same. To get an idea what you might be facing, google "Wall of Vaginas". Sorry but a direct link would be a TOS violation however it's a work of art that shows a number of woman bottoms. I think if you want a better option you would have to ask a gynecologist if there is anything abnormal about your bottom structure.

@Dena

That was actually very helpful, thank you.

My poor asexual soul is mildly scarred now, but whatcha gonna do. Dear god genitals disturb me.

Based on that... yeah I don't think I fit the normal female phenotype. I also found the measurements for what is considered an enlarged clitoris, and I meet them.

I guess I have to figure out what to do about this. My problem with going to the doctor is that other people interacting with my genitals makes me severely dysphoric. I have no plan on ever getting bottom surgery...

[josie76]

Hi Parker,

A good way to help would be to have a doctor order a karyotype test. This will identify your sex chromosomes. If you have XX chromosomes it is doubtful that androgen insensitivity is an issue for you. If you have 46XY then PAIS is likely. However it would also be possible to have some trisomy condition like XXY Kleinfelters.

If you end up 46 XY then your doctor/endocrinologist might consider giving you a blocker for the aromatase enzyme. Otherwise excess T could be converted into E in your body tissues.
If you are 46 XX then not likely an issue for you. There are a number of other conditions that can influence partial masculinization of otherwise female genetic fetuses. If you don't have a Y chromosome then likely your T hormone therapy should go just fine.

[ParkerTalks]

Hi Parker,

A good way to help would be to have a doctor order a karyotype test. This will identify your sex chromosomes. If you have XX chromosomes it is doubtful that androgen insensitivity is an issue for you. If you have 46XY then PAIS is likely. However it would also be possible to have some trisomy condition like XXY Kleinfelters.

If you end up 46 XY then your doctor/endocrinologist might consider giving you a blocker for the aromatase enzyme. Otherwise excess T could be converted into E in your body tissues.
If you are 46 XX then not likely an issue for you. There are a number of other conditions that can influence partial masculinization of otherwise female genetic fetuses. If you don't have a Y chromosome then likely your T hormone therapy should go just fine.

@josie76
ok thats definitely an idea.

Hmmmm, don't know how I would manage it without stating my reason for wanting it.  Do you know what kind of test a karyotype test is? Is it a blood test?

I got preliminary bloodwork done for starting HRT a few weeks ago, which showed ridiculously high DHEA-S levels (above male range), and high, though not worryingly high testosterone levels. Not sure how much that might affect this.
I'm getting ultrasounds done of my Adrenal Glands, and, where my Ovaries *should* be. Am I right in remembering reading that the "pelvic" ultrasound should show if I have PAIS or not?

[josie76]

Well often PAIS is diagnosed by genital formation on an identified as male at birth child. However you being at the other end of the scale definitely brings up further questions. An ultrasound might be able to ID if you have mullerian structures (uterus or partial) but a CT is way more specific at identifying organs.

The karyotype is a blood test. The lab just makes many multiplications of your chromosomes then uses a microscope to identify your 23rd chromosome pair. It's a visual test. They don't actually do any gene sequencing of any kind in this test.

So high adrenal androgens and high for female range testosterone? Well if you are XY and PAIS then you may have internal testes. But there are other genetic conditions that can cause XX person to produce high androgens. There is no way to know without determining which form of gonad you have. Also possible to be ovatestes where they have cells of both types.

Chromosomes after all don't determine our physical sex. They just set the pattern to follow. Sex development is all based on hormones and cell receptors.

I have been identified as a grade 2 PAIS based in genitals. I have other skeletal traits that match the female norms. So I asked my doctor when o started HRT about the karyotype. He ordered it. Mine came back 46 XY. After that he said there was no medically necessary reason to order the gene sequencing test for the AR gene. Either way the only treatment for androgen Insensitivity is hormone therapy based on the gender identity of the patient.

[ParkerTalks]

Well often PAIS is diagnosed by genital formation on an identified as male at birth child. However you being at the other end of the scale definitely brings up further questions. An ultrasound might be able to ID if you have mullerian structures (uterus or partial) but a CT is way more specific at identifying organs.

The karyotype is a blood test. The lab just makes many multiplications of your chromosomes then uses a microscope to identify your 23rd chromosome pair. It's a visual test. They don't actually do any gene sequencing of any kind in this test.

So high adrenal androgens and high for female range testosterone? Well if you are XY and PAIS then you may have internal testes. But there are other genetic conditions that can cause XX person to produce high androgens. There is no way to know without determining which form of gonad you have. Also possible to be ovatestes where they have cells of both types.

Chromosomes after all don't determine our physical sex. They just set the pattern to follow. Sex development is all based on hormones and cell receptors.

I have been identified as a grade 2 PAIS based in genitals. I have other skeletal traits that match the female norms. So I asked my doctor when o started HRT about the karyotype. He ordered it. Mine came back 46 XY. After that he said there was no medically necessary reason to order the gene sequencing test for the AR gene. Either way the only treatment for androgen Insensitivity is hormone therapy based on the gender identity of the patient.

@josie76 from what I've read it's definitely possible and not uncommon for PAIS kids to get raised female, just less common than to get raised male.

They grade PAIS based on the Quigley Scale: 1-7
1 is the basic "typical male" and 6/7 are the "typical female".
2-5 are ambiguous, but not all of them are visible at birth. 3&4 are visibly ambiguous in babies. 2 probably depends on the doctor and how thoroughly they're examining the baby's genitals, 5 I doubt very many doctors would notice.

I've done some more research and looked at a bunch of diagrams and I think I'm a 5?

I've been avoiding doctors or anyone else looking at my genitals since I was a little kid and all my pediatrician could get me to agree to when I was starting puberty was a "look to see if there's hair" check. I've never seen an OB/GYN. I don't think anyone except me has seen my genitals since I was a toddler.

Dysphoria, you know how it is.

I worry that if I tell my endo about this and try to get karyotyped he'll want me to get an examination first 

But if it is the case idk how testosterone hrt would work for me so...?

[Linde]

Not to long ago, I found out that I had something like the XX male syndrome.  I always knew that I was different, but I did not realized that i was that different!  i might even have some other things.
Further testing revealed that i have one ovary (mind you, i was assigned male at birth), and very recently I found out that my pituitary seemed to have never worked and that my boy never produced testosterone.

You could have something like the androgen insensitive syndrome, which means you have external female sex organs but internally you are a guy.
Intersex syndromes are a funny thing, and you could have a little bit of several conditions!

To give you an idea what is all possible (at least know at that time the list was made), take a look here.
http://www.isna.org/faq/conditions

[josie76]

@parkertalks

Yeah I fit as a grade 2. I might have been on the edge between grade 2 and grade 3 but I was able to make fertile sperm which puts me in grade 2. My skeletal features has made a few doctors wonder if I had Kleinfelters. The urologist who did my surgery noted my hips right away when I first met him.

Grade 6 appear fully female on the outside but have internal testes and grow pubic hair. Grade 7 are immune to androgen hormones and so grow not even female pattern pubic or body hair.
Grade 5 would generally be raised as female. There are over 700 k own mutations of the AR gene and they all have differing effects on the person's body.

So the only issue I could see is that if you have testes then extra T can be converted into estrogen which I'm guessing you would not want. So the doctor might prescribe an aromatase inhibitor. So determining if you have ovaries or testes inside might make a difference.

[Linde]

My skeletal features has made a few doctors wonder if I had Kleinfelters. 

That was the first thing my internist guessed when he saw me, and it was believable, and I hang on to this for quite a while .  Until first my genome analysis said I had the typical gene structure of a post menopausal female, and than the first buccal swap tests (3 of them) came back saying that no Y chromosome could be detected.  Later the karyotype also said I was XX.
Here I had 5 independent tests tell me that I am female, I slowly start to believe this!

[ParkerTalks]

Not to long ago, I found out that I had something like the XX male syndrome.  I always knew that I was different, but I did not realized that i was that different!  i might even have some other things.
Further testing revealed that i have one ovary (mind you, i was assigned male at birth), and very recently I found out that my pituitary seemed to have never worked and that my boy never produced testosterone.

You could have something like the androgen insensitive syndrome, which means you have external female sex organs but internally you are a guy.
Intersex syndromes are a funny thing, and you could have a little bit of several conditions!

To give you an idea what is all possible (at least know at that time the list was made), take a look here.
http://www.isna.org/faq/conditions

Yeah, it's.. complicated.

I know I have a uterus, because I have (albeit irregular) periods. But beats me about whether I've got ovaries or any of the rest of the system.

I'm getting my estrogen from somewhere, I know that.
I have normal female levels for someone my age for all the different hormones in the estrogen family. But also skyrocketed DHEAS, and raised testosterone. So who knows.

That compounded with what I am fairly sure, from the perspective of an amaetur, is ambiguous genitalia, and an Inguinal hernia I had removed as a kid, really makes me wonder.

[josie76]

Inguinal hernias are very rare in anyone who did not have a gonad drop through the abdominal wall during development. That is normally triggered by testosterone or other activation of androgen receptors.
I know talking about these things can be a major anxiety cause but finding a good doctor and discussing it with them is the only way you will get the answers.

[Linde]

I wonder how many people have secondary hypogonadism, which is one of my newest diagnosis.  The just reached this conclusion during my recent visit to the Mayo Clinic

  I suspect she did have some reason for secondary hypogonadism which would explain her incomplete masculinization, development of breasts, etc., throughout her whole life.

If one consider that it took many decades until a doctor came to the conclusion that did not develop into a male.

If it was never discovered with me, who knows who else has something like this?  Anyone who did see my naked body when I was still presenting as a male could not miss that this was not a male body, ut nobody looked at me.  The closest was an internist, who thought I had Klinefelter.

Anyway, who knows what you have, you would never know it until somebody really start to turn you inside out.  I probably should have gotten something like HRT for my entire adult life, and my diabetes, kidney problems and who knows what else, could have been prevented.

I urge you really, have some doctor looking at you to find out what i going on with you!
Hugs
Linde

[ParkerTalks]

I wonder how many people have secondary hypogonadism, which is one of my newest diagnosis.  The just reached this conclusion during my recent visit to the Mayo Clinic If one consider that it took many decades until a doctor came to the conclusion that did not develop into a male.

If it was never discovered with me, who knows who else has something like this?  Anyone who did see my naked body when I was still presenting as a male could not miss that this was not a male body, ut nobody looked at me.  The closest was an internist, who thought I had Klinefelter.

Anyway, who knows what you have, you would never know it until somebody really start to turn you inside out.  I probably should have gotten something like HRT for my entire adult life, and my diabetes, kidney problems and who knows what else, could have been prevented.

I urge you really, have some doctor looking at you to find out what i going on with you!
Hugs
Linde

Inguinal hernias are very rare in anyone who did not have a gonad drop through the abdominal wall during development. That is normally triggered by testosterone or other activation of androgen receptors.
I know talking about these things can be a major anxiety cause but finding a good doctor and discussing it with them is the only way you will get the answers.

Hmmm... If I were to contact a doctor, would you two recommend I contact the endocrinologist who I will soon be starting HRT treatment with, or my primary care physician?

[Linde]

Hmmm... If I were to contact a doctor, would you two recommend I contact the endocrinologist who I will soon be starting HRT treatment with, or my primary care physician?

I think you can forget about your primary care physician.  One needs to have some kind of specific knowledge about intersex/trans conditions to be diagnosed properly.  I don't know how your endo is in that field, but I assume better than the average family doctor.  i am a medical professional, and the only thing I could identify was that I was different.  My primary physician is a friend of mine, and an internist, and he thought I was Klinefelter, and everyone of my three endos had a different opinion on what I was!
It took the endos of the Gender department of the mayo Clinic, physicians who deal with people like us on a daily basis, to make my last diagnosis that I simply could not develop as a male, even though I had aone, supposedly, functioning testiccle!  Your case could be very similar, with the difference that my brain seems to be more female than male, and yours seems to be more male, and you have female genitals, while I have male one.  But it shows that no matter what the genitals are, they have no influence on your development.

Good luck with finding out, who you are, but it will not make much difference in your daily life!  You have to live the life that makes you happy!
I was a female kind of looking like a male, while you are a male, kind of looking like a female!

[HughE]

I have female ("eunuchoid") skeletal proportions and visually, I look a lot like someone with Klinefelters. I had quite a lot of tests done last year including a pituitary MRI, and I have congenital hypothalamic secondary hypogonadism. My testicular function appears to be completely fine, with the problem just being that my brain isn't sending out enough of the signal (LH) that tells my testicles to produce testosterone. In March this year they started me on testosterone replacement, and from what's happened to me since then, it's clear I'm not androgen insensitive in any way, the thing that's made me androgynous looking has just been low testosterone the whole time.

In my case there's so many similarities with what seems to commonly happen with prenatal DES exposure (hypogonadism, eunuchoidism, feminised personality, behaviour and gender identity), that I'm pretty sure the cause is being prenatally exposed to synthetic female hormones. The conventional causes of intersex all tend to act throughout that person's prenatal development, whereas what appears to have happened to me is completely male development for most of the pregnancy, but with a period of completely female development partway through. Again that ties in with exposure to testosterone blocking hormones/chemicals as the cause.

I was born with a hydrocele, and when I was about 10, a loop of my intestine dropped through the gap where the hydrocele was, creating an inguinal hernia. Hydroceles and childhood inguinal hernias seem to be quite common among male assigned intersex people.

[ParkerTalks]

Getting an ultrasound "of my ovaries" today. We'll see if I have any.

[ParkerTalks]

Also, reading up on my DHEAS levels and some other symptoms... I suppose I could also have the XX form of Congenital Adrenal Hyperplasia.
But, that would still make me intersex, now wouldn't it? I guess the conclusion I'm getting to is that the chances of me not being intersex are pretty low at this point.

[Linde]

Also, reading up on my DHEAS levels and some other symptoms... I suppose I could also have the XX form of Congenital Adrenal Hyperplasia.
But, that would still make me intersex, now wouldn't it? I guess the conclusion I'm getting to is that the chances of me not being intersex are pretty low at this point.

I don't think that this condition would make you intersex.  It is more like a mutation.  I have secondary hypogonadism, and this is not considered to be part of my intersex syndrome, but an additional mutation.

If they would find undescended testes instead of ovaries, you would be intersex, specifically if you have female genitalia.  In that case you might not have an uterus either.
Most intersex persons do not have a single stand alone syndrome, but a mixture of several things plus a lot of mutations

[ParkerTalks]

I don't think that this condition would make you intersex.  It is more like a mutation.  I have secondary hypogonadism, and this is not considered to be part of my intersex syndrome, but an additional mutation.

If they would find undescended testes instead of ovaries, you would be intersex, specifically if you have female genitalia.  In that case you might not have an uterus either.
Most intersex persons do not have a single stand alone syndrome, but a mixture of several things plus a lot of mutations

Hmm. All of the intersex advocacy organizations and websites I've seen include CAH? Perhaps it is one of the more debated forms, I don't know.

But for example, it's mentioned on the blog "Intersex Roadshow"  which is an information platform ran by an intersex activist.
Or here, on the website for the old nonprofit, the Intersex Society of North America