If you are a guy with PAIS, your body grew with lots of testosterone—a.k.a. T (the tiny messengers telling your body to do certain things like help the penis grow and help your gonads drop.) However, your body wasn’t able to receive all the messages that T sent because the receiver (a.k.a. “receptor”) for T doesn’t work completely (a.k.a partially).
Since you have a Y chromosome, you have no womb or periods.
Penis & PAIS
Some guys with PAIS may have a penis on the smaller side; in others the penis may be larger. It depends on how your body reacted to T before you were born. Perhaps doctors gave you extra T when you were a child, to help your penis grow larger (ask your parents or doctors if you’re not sure about this).
The penis often grows during puberty with T. Depending on how your body can react to T, there may be less or more growth of your penis.
Right now, you are going into puberty because your gonads are making high levels of testosterone (T) (a.k.a. androgen). Although your body has T, it reacts partly to it because it is “partially insensitive” to T. And, your body can also use T— by using it partly and using the E it helps make.
Should my gonads stay or should they go?
Since you have gonads, you can decide what you would like to do now that you are going through puberty. Your gonads help make your body go through puberty and help your body keep strong and fit after.
Some people choose to remove gonads for different reasons. One reason is that there is a link between PAIS and testes cancers. This pretty much means that people with PAIS are at risk of developing a tumor in the testes. For guys without PAIS, they have a risk too. Typical guys have a total life risk of .4% of getting testicular cancer. Individuals with PAIS have around a 15% risk of testicular cancer, and guys with testes that don’t descend (called ‘cryptorchidism’) have a risk of about 1.2%. (This also might be the case if gonads aren’t in the scrotum (ball sack) or if doctors test a tiny piece of one (called a biopsy) and find small and potentially harmful changes that might suggest an early form of cancer. With that said, testicular cancer is one of the most treatable of cancers, meaning the outlook is pretty good for people who have it.
Another reason to think about removal: changes from T & E are often irreversible: this means that if you get body hair or your voice gets lower, those changes remain even when you don’t have those hormones. And, for some guys, doctors might check to see if enough T is made to help the body change at puberty and give penis growth—sometimes, doctors might talk with guys with PAIS about taking extra T, even if they have gonads that produce T. It just depends.
Talk to your doctors and parents about this decision: it’s a big one, and removing the gonads means taking hormones for the rest of your life. Weigh the options and decide what feels right for you.
In the Puberty:Outside section, we show a range of body responses to T. When you go back, check out what happens when you are partly and mostly able to react to T. Some changes from T may have happened before you were born.
Remember that PAIS covers a big wide range of possibilities, so we can’t pinpoint exactly how your body will respond to T. It could be anywhere on the range.
Also check out the changes your body can make with a little E (like strengthening bones). Sometimes in PAIS with guys, T can convert to E causing a bit of breast development to occur. Some doctors might recommend taking estrogen-blocking hormones if there are signs of breast growth for guys with PAIS.
With PAIS, your body can respond partly to T, and some people with similar conditions feel that they’d like to live as female, and choose to take E instead and see how they grow and feel. It just depends on what decision and hormones are right for you.*
* Note: Feel free to go back to the section about Puberty and the changes that happen in your brain and mind, especially when thinking on what hormones your body needs.