Thursday, February 17, 2011

Complete Androgen Insensitivity Syndrome (CAIS)

            CAIS is a genetic disorder. It is usually passed down through the mother. It only effects genetically XY patients. Since it is a recessive trait, it is impossible to be XX and have CAIS. There are other versions of this Androgen Insensitivity Syndrome (mild and partial), but are more rare, and is not the case for me.
            The mutation that causes CAIS is usually located somewhere on the X chromosome. Androgen is a type of the male testosterone. It is what is responsible for male development of the gonads, hair growth, body odor, and oil production. This mutation on the X chromosome prevents the body from recognizing the androgen (testosterone) in the body. Since the body does not know what to do with this hormone, it is unable to use it to develop like a normal male. So basically, even though the body has hormones running through it, it might as well not be there, because the body doesn’t know how to use it. Since the body can’t recognize the hormone, the germ cells didn’t know how they were supposed to develop. They began developing into gonads, but stopped because it didn’t know any better. When the body doesn’t have any hormones in the body, the body decides to develop female. So even though I had gonads, my body started to develop female characteristics. My outward appearance has always looked female, and I have never had any type of surgery to alter the way I look.
            So even though my genetics say I have a male sex chromosome, I am 100% female. I have a vagina (not a penis, balls, or anything like that). I can have normal sex, and I was one of the few that didn’t have to use dilators. I don’t grow much hair besides on my head, arms and legs. I will never have armpit hair, and will always have sparse pubic hair. The hair on my head will never get greasy. My body lacks the ability to produce the oil that builds up in hair, which makes it look greasy if it’s not washed often. I have also been told by others that is the reason why my skin is so naturally soft. But this is also why I have really clear skin. Sure I will get a pimple every once in a while, but because my body doesn’t produce the same amount of oil like everyone else, my skin will always be really clear. I also don’t have a lot of body odor. I could go without using deodorant, and you would never know; even after a tough workout. But I still do use it when I’m active, because I’m still scared that I will stink. And no one likes being the stinky kid! The most obvious plus to having CAIS is that I will never have a period, ever. I will never have to buy tampons or pads. I will never have to buy a pregnancy test. I will never have to go through the cramps. But that also means I can’t use that as an excuse :( HAHA. CAIS patients are usually taller than normal. I am 6 feet tall. I was the 2nd tallest girl in my graduating class. Before the surgery, and before estrogen is started, CAIS patients are usually extremely skinny. My senior year of high school, I was 6 feet tall, and only 130 pounds. According to BMI, I was underweight. I still wonder what my body fat % was. I'm sure it was pretty low.
            Well, I just told you about all the positives. Now its time for me to mention the drawbacks of CAIS. The main one, and the most obvious, is the infertility. I will never be able to have children of my own. To some, this is not a big deal. But I would give anything to be able to have a child that is biologically mine. I would give up all the athletics I’ve participated in, even if that meant having a baby at 14. But it will never happen. Women with CAIS are said to have bigger bodies once the HRT has begun. This biggest aspect is these women are said to have large breasts. I mean HUGE boobs. I however, have been on HRT for 8 years now, and am still an A cup. The estrogen also makes you gain weight. I definitely gained after college. But I am proud to say that I have been losing some weight in the past 7 months.


  1. Thanks so much for this wonderful blog. It is incredible to learn about this difference in your genetic structure and I so much appreciate your sharing this with the world.

    You seem like a totally awesome chick! Maybe one day we will run into each other. I am taking a human sexuality class and am researching AIS so thank you so much!


  2. Thank you for sharing your experiences and feelings. I'm in medical school and becoming more and more open minded to all the possibilities life dishes and reading experiences like yours helps to personalize the psychosocial aspects of some of the conditions I've read about in the text books.

    I had a hard time reading this page because of the font color and background colors - I found myself leaning from side to side as my eyes adjusted to the contrast of the light and dark background and the green font. Don't change it for me but consider it for future readers. Otherwise, I loved the layout and the title bar and graphic.

    Please keep sharing your truth.

  3. Dear Meg
    Hey :) do you sometimes feel the world is watching? Is it hard for you?

    I don't see myself as that different, but growing up a lot of my friends liked other girls, and a lot of my girlfriends liked everyone, and all that was pretty early for me.
    People are people - they are *who* they are.
    I grew up as a guy people thought was more pretty than hardened (People thought I was a girl till I was 3 or 4.). It's the one thing people think sets me different than guys, but really doesn't.

    Do you feel a glow of truth inside? An intensity? Keep it close and you'll feel strong and open enough for people to admire you over anything else about you. I promise that.

    So I wanted to share where I'm coming from, and a few people I look up to (a few of them have CAIS too).

    Eden Atwood (HOT/Beautiful! an dead famous singer)
    Andrej Peijic (I envy this guy. He doesn't look like a girl but he's pretty enough the world thinks so - but he doesn't care about that. It's something I agree with)
    Guy lives in Japan.
    Bill Kaulitz - Brother to Tom K from one of my favorite German rock bands. Used to get teased for looking pretty/girlie. I can relate <.<

    This is a TINY sample of what people under the weight and eye/judgement of a tough world did - if you just want a normal life, I hope in a small way, sharing what big things people have done lets you feel a little that asking for something just for you isn't that big a thing to ask for.

    -Jesse Lee

  4. Hello Meg!

    it's been a while since the last comment was posted here
    I just wanted to tell you that it is great to create a blog about that
    I have an intersex condition too but have made bad experiences with a female doctor
    before that my appearance really bothered me but meanwhile I am proud of who I am and do not want to be any different:)
    I have ambiguous genitalia and have to shave every morning eventhough my shape is extremely feminine and my face looks feminine as well
    I identify as girl

    anyway...a huge THANKS and respect for creating this blog