CAIS and PAIS and AIS

[imysworld]

What is the difference between all those three, i dont really understand any of it! Doctors just always confused me

Someone please help!

[spacegirl]

There are people here who know much more about ais than I do. But I think cais is "complete ais", and pais is "partial ais". Complete or partial describing how thorough your body's insensitivity to androgens is. They have a scale of insensitivity which runs from 0 to 7.

[miriam]

Something like this?

http://www.aissg.org/21_OVERVIEW.HTM

http://www.aissg.org/22_CAIS.HTM

http://www.aissg.org/23_PAIS.HTM

http://www.aissg.org/24_RELATED.HTM

Groeten, Miriam

[PAISWoman]

Something like this?

http://www.aissg.org/21_OVERVIEW.HTM

http://www.aissg.org/22_CAIS.HTM

http://www.aissg.org/23_PAIS.HTM

http://www.aissg.org/24_RELATED.HTM

Groeten, Miriam

I'm so glad they updated this site because now they finally include the true lowest grade 1 as being completely masculinized but with infertility.

It was because of this mishap that so many people were calling my doctors a lie because people didn't understand that not all people with grade 1 will have hypospadias and/or Gynecomastia.

I had someone contact me about doing a story on PAIS and when I told her about my story, she told me that I wasn't born with PAIS and that I simply had something else going on. Of course, I thanked her for her time and never contacted her again.

What really bothers me is the people that insist that my doctors and the test results are not real because I don't fit into their definition of what AIS really is.

I left this message board because I was constantly being told the same thing by people who simply found it hard to believe what my doctors were telling me. I've grown tougher skin now and I really don't care what people think of me anymore. Think what you may, but my medical records are very clear. :happydanc

Anyway, to the OP, AIS is like a spectrum. At the one end is male with partial androgen insensitivity and at the other end is female with complete androgen insensitivity. In the middle is all kinds of variables. The variables come in all different shapes and sizes and aren't so neatly presented in nice easy to identify categories.

As Miriam posted, that is a good place to start learning about AIS besides speaking with people who do have AIS. I have grade 1 and have been re-assigned to female. There are other who have grade 7 and are completely happy with their gender. I believe that if you talk with people who have AIS, you can get a good idea of how we are related and the differences that we share. Feel free to PM me, I'll try to stick around this time until someone comes and runs me off the board again.
:thumbs_up

[Laura Robison]

It was because of this mishap that so many people were calling my doctors a lie because people didn't understand that not all people with grade 1 will have hypospadias and/or Gynecomastia.

Hi PAISWoman,

I have been talking to Peggy about my symptoms and she says it sounds like I have PAIS, but she questioned that my puberty was more feminizing than it should have been. According to the way my scars were, and the smallness of my genitals, I may have grade 3 PAIS. During puberty I had some breast development, and I have a more female figure and hips. I had some very light slow growing hair on parts of my face by the age of around 20, but not coarse hair like a beard, that I shaved off around every 4 days or so. I do have pubic hair but it is sparse. I have some light fine hair under my arms that's hard to see, the longest is about a half inch, but almost invisible, and that is all. As for body hair, I have a few darker hairs at the front of my shins, but the rest of my legs are hairless.

Does my puberty sound that unusual? I have never been tested for PAIS and I have heard the tests are very expensive. I have heard they do a biopsy of genital tissue for the test, but since I have had sex reassignment surgery, I don't know what could be biopsied. During my SRS, the surgeon found the remainder of my vagina.

Anyway, to the OP, AIS is like a spectrum. At the one end is male with partial androgen insensitivity and at the other end is female with complete androgen insensitivity. In the middle is all kinds of variables. The variables come in all different shapes and sizes and aren't so neatly presented in nice easy to identify categories.

That's why I wanted to ask you about this, if my puberty was that unusual, or if it's just part of the variables.

Laura

[PAISWoman]

Hi PAISWoman,

I have been talking to Peggy about my symptoms and she says it sounds like I have PAIS, but she questioned that my puberty was more feminizing than it should have been. According to the way my scars were, and the smallness of my genitals, I may have grade 3 PAIS. During puberty I had some breast development, and I have a more female figure and hips. I had some very light slow growing hair on parts of my face by the age of around 20, but not coarse hair like a beard, that I shaved off around every 4 days or so. I do have pubic hair but it is sparse. I have some light fine hair under my arms that's hard to see, the longest is about a half inch, but almost invisible, and that is all. As for body hair, I have a few darker hairs at the front of my shins, but the rest of my legs are hairless.

Does my puberty sound that unusual? I have never been tested for PAIS and I have heard the tests are very expensive. I have heard they do a biopsy of genital tissue for the test, but since I have had sex reassignment surgery, I don't know what could be biopsied. During my SRS, the surgeon found the remainder of my vagina.



That's why I wanted to ask you about this, if my puberty was that unusual, or if it's just part of the variables.

Laura

Hi Laura,

I'm not a doctor and I'm no expert on AIS. You are asking me to make a diagnosis on your body when I'm not qualified to do so even just giving my opinion would be considered as a medical diagnosis. The questions you have should be address to a qualified medical professional licensed by the medical board and none other. Only they can tell you for sure rather you have AIS or not.

As far as the test to confirm AIS, I didn't have to have a biopsy done but I did have a MRI done and blood test done along with chromosomes. My doctor also ordered an anti-mullierian test which she told me that the test would determine how sensitive I was to androgens. To make a long story short, the test came back way below the average of any male or female. Along with what was found in my MRI scan, I was diagnosed with AIS.

The signs that you have listed are very similar to my own. I also had re-assignment surgery and the doctor insisted that I take Testosterone for a month and half prior to my surgery. When the test came back exactly the same because the Testosterone had no effect on my body, he insisted that I triple the dose. One week before surgery, I had 3 injections of Testosterone which he said elevated my blood levels within range. When I tell this story to my doctors they just shack their heads and question rather or not this surgeon was licensed.

Nevertheless, if you really want answers to your questions, please speak with your doctor. No one can diagnose you over the internet and it's even harder to self diagnose.

[Laura Robison]

Thanks for your answer PAISWoman. :-) Yeah, I know I can't get anything like a diagnosis, but I was just wondering if my symptoms seemed strange or unusual. I think you answered my question. I'm going to see a doctor on October the 5th about a hypothyroid condition, and I'm going to bring this up to him so maybe I can get something started on this.

I know someone else who has PAIS, and she had a low blood count and was forced to have testosterone injections before her SRS. It didn't help much if at all, but she was able to get her surgery anyway. That was a traumatic experience for her.

[Aseras]

Does low blood counts go with AIS usually? Mine are always low, the very bottom or below normal for a "male"

[Laura Robison]

I'm not sure if low blood counts go with AIS, and I don't know about my blood count, but I do know that testosterone is given to help boost it up.

[Aseras]

Yeah my endo last week tried his best to get me to go back on testosterone...

[spacegirl]

Does low blood counts go with AIS usually? Mine are always low, the very bottom or below normal for a "male"

I thought you said you already knew you are a chimera?

[Aseras]

I know I have a differing karyotype. I don't know if it is from 2 fused zygotes/fetuses or if it's from nondisjunction or any other number of things.

I'm virtually certain I don't have AIS. If anything I thing I am overly responsive to androgens.

[spacegirl]

I know I have a differing karyotype. I don't know if it is from 2 fused zygotes/fetuses or if it's from nondisjunction or any other number of things.

I'm virtually certain I don't have AIS. If anything I thing I am overly responsive to androgens.

Sorry, it just sounded like you were trying to see if ais fits your signs.

[Sypha]

Mine are always low as well. I am currently taking 200mg of testosterone every 10 days, but I am wondering if I should increase my dosage?

[Aseras]

I was taking 200mg of testosterone cypionate every 2 weeks. I had it cut back to 50mg every 3 weeks and it was still too much for me to handle. I was always feeling tired, and I slept all day. I gained at least 60 lbs, a lot of muscle and fat, so much so that I have stretch marks on my arms and stomach. I went from having no beard and no body hair to having fur, I had hair literally everywhere and I started loosing it on my head too. Even as I cut the dose drastically. Most of that has reversed now ~ 3 years after I stopped. My natural levels are only 41-90ng/dl now, before I started TRT they were in the mid 100's and it's incredible how much better I feel. It just goes with my hypothesis that I am way sensitized to testosterone.