Community Conversation > Intersex talk

Self-Identifying PAIS?

<< < (2/5) > >>

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:

--- Quote from: josie76 on October 09, 2019, 02:23:31 pm ---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.

--- End quote ---

@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  :embarrassed:

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:

--- Quote from: josie76 on October 09, 2019, 06:38:58 pm --- My skeletal features has made a few doctors wonder if I had Kleinfelters. 


--- End quote ---
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!

Navigation

[0] Message Index

[#] Next page

[*] Previous page

Go to full version