The Basics
What is AIS?
In the womb, for the first few months, all our sex organs look the same. Exactly the same. It doesn’t matter if you’re XX or XY, your genitals look the same. Why is that? Well, your hormones haven’t started to tell your bits and pieces which way to go yet - male or female. (source)
You see, if there’s a Y chromosome present, that chromosome will tell the body to make androgens (male hormones like testosterone) and you’ll end up with traditional male sex organs. But what if the receptors don’t understand those androgens, what happens then? Well, that’s easy, you get us: Androgen Insensitivity Syndrome!
If you have AIS, all that means is that our body doesn’t understand androgens very well or at all. This means that our bodies may stay feminine and may not be affected by those androgen hormones at all.
Yeah, you heard me right. The default is female. You see, testosterone “Aromatizes” and is converted into estrogen (source), which our bodies do understand, and we develop as typical females, just missing a few reproductive parts.
AIS is also on a spectrum and may affect our bodies from being completely androgen insensitive to partially androgen insensitive.
Editors Note on Growing up with AIS:
When I was a little girl, I read scholarly articles about AIS and would see words like “Testicular Feminization” and “undermasculinization” and I used to cry myself to sleep thinking I was a man because I had AIS. I was assigned female at birth, and identified as female, but terms like these just made me feel worthless.
As a young woman, I finally understood the truth. These journals were written by men in the 1950s who lacked the empathy necessary to write on the subject of AIS. They ignored data, like the existence of intersex folk as proof that sex is a spectrum, and continuing to insist that sex is binary, and the false idea that male was the biological default. Ignoring data because it doesn’t fit your pre-determined conclusion is just bad science!
In short, read the medical articles if you’d like, but don’t waste a single tear on those articles and papers. Even modern papers still have old terms and biases from these early studies lingering in the margins, so be careful out there. The terms that are used can be very hurtful and antiquated, but take solace in the fact the original authors are probably dead by now. As a catholic, I’d like to pray for their souls. As a bad catholic, I haven’t bought a single candle for them yet.
What is CAIS?
CAIS stands for Complete Androgen Insensitivity Syndrome. Imagine trying to fit square androgens in a round hole / receptor. It’s kind of like that. Estrogen, your body understands; Testosterone, WTF is that?
So what does this mean? Well, as a fetus developing in your mamma’s womb, your body had to make some hard decisions. It had the Y chromosome, it had the androgens, but it couldn’t understand them, so it simply could not make the penis and the testies without those hormones. Ok, ok. Well, it didn’t have the female hormones either to make the uterus, ovaries, cervix, or the fallopian tubes. That left your little baby body in a pickle in utero (not literally in a pickle, for it didn’t have vinegar or dill either).
Instead what it left you with is external sex organs of a typical female, a clitoris, vulva, vaginal opening, because it did have and understand estrogen, but it didn’t leave you much in the way of sex organs on the inside. This means a shortened vaginal canal, no uterus and no ovaries. In their place you can often find what are called testes. Testes are just what gonads are called once they’re exposed to androgens. This doesn’t make you a boy. Sometimes these gonads / testes can cause problems, so check out the body section for more information.
Often people with CAIS don’t know they have AIS until puberty and discover they have AIS after going to the gynecologist for not receiving their period.
What is PAIS?
PAIS stands for Partial Androgen Insensitivity Syndrome. Nothing in life is black and white. We all exist in the beautiful shades of grays that make up this world. PAIS consists of a range of phallus (clitoris or penis) lengths as well as vaginal and urethra openings.
What does this mean? Well, unlike CAIS, your body understands androgen, but just a little bit. Clitoris and penis both come in all shapes and sizes, and are made of the same tissue.
Sometimes when babies are born with PAIS, parents are coerced by medical professionals to choose and assign a sex for their babies through surgery. In the Intersex community irreversible medically unnecessary surgery on infants and young children should not be allowed, and that such surgery should only occur when the person themself is old enough to consent based on their own preferences. Learn more about ambiguous genitals and medical consent in the medical section.
A simple rule with surgery is if they can pee, let them be, and never force surgery on a non-consenting minor.
What is MAIS?
“Mild androgen insensitivity syndrome is associated with a mutation of the androgen receptor gene and is infrequently reported. It presents in men as infertility but is not associated with genital anomalies. Fertility is possible if the sperm count can be restored after high-dose androgen treatment.” (source)
