CAIS (a.k.a. Complete Androgen Insensitivity Syndrome)

You have complete androgen insensitivity (CAIS.) Your body grew as a girl while inside the womb because your body did not react to the testosterone (T) that it was making.   Since girls with CAIS have a Y chromosome, the body doesn’t have a womb and will not get periods.

In the Puberty: Outside section, we show a range of body responses to T. Take a look at this picture cloud, to see what happens during puberty when you don’t react to T and have E, too.

If you have your gonads (also called testes), your body is going into puberty because they are making high levels of testosterone (T) (a.k.a. androgen) and estrogen (E).

FAQ

If I have AIS, are my gonads actually testes?

The short answer is both yes and no.

When you were growing in the womb, gonad tissue (which is the same for everyone) changed into testicular tissue because of a gene on your Y chromosome.

Testes make hormones like T, which your gonads do.

At puberty, testes usually grow larger to produce sperm and make more T. Because testes need to respond to T to make sperm, your gonads didn’t grow as large and do not make sperm. Essentially, they are not testes like your guy friends. They are smaller and with a different set of things going on. They just make T and do not make sperm. Can you call them testes?. If you want, sure! Do they do everything a testis typically does (e.g. make sperm)? No.

This gets down to why we say gonads here—it’s a more general term. You are free to use whatever word makes sense to you (including making up names for them yourself.)

Hormones

For a girl with CAIS, the body doesn’t react to T directly because it is “completely insensitive” to T. However, the body will use T by (a.k.a. changing or ‘aromatizing’) some of it to the hormone estrogen (E) and using that. The E will help the body go into puberty and grow. Since the girl has a Y chromosome and gonads that make T and work like testes, that girl doesn’t have a womb or a period.
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Vaginas

Vaginas vary a lot in size. Girls with CAIS may be more likely than others to have vaginas on the smaller end of the scale. It just depends on your body and how it grew before birth. All vaginas, no matter the size, stretch, and your vagina doesn’t have to be a specific size to enjoy having sex. You might decide that you want to stretch yours–a process called ‘dilation’. For more on vaginas and how to stretch them, check out our step-by-step dilation guide.

If you are thinking about starting dilation, talk to an experienced gynecologist to understand what is needed before you start. It’s important to involve an experienced gynecologist in this from the start. This typically means a gentle examination and working with them on a plan to go through the process of helping expand your vagina. Everyone has different needs for their body. Talking with a doctor first is important to make sure you are doing what is right for you and your body.

What is your gonadal situation?

 

With gonads

For girls with CAIS who have, doctors might discuss whether or not we would like to remove them. Some of us do, and others don’t—we all have to weigh the pros and cons of both options. For more information on that decision, questions you need to ask your doctor, and things to consider, check out Taking the Wheel

With gonads removed

For girls with CAIS who no longer have gonads, chances are that doctors will discuss hormones and provide pills or patches of hormones like estrogen (E) to help get puberty started and to continue taking as an adult.