For those of us with Partial Androgen Insensitivity Syndrome (Partial AIS or PAIS), even though our bodies had lots of testosterone (T) as a baby, our bodies can only partially react to T. Our bodies can also use T by converting it to the hormone estrogen (E).
Since you have a Y chromosome, you won’t have a womb or a period.
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 able to react to T (usually in the middle of images). Some changes from T may have happened before you were born. Remember that PAIS covers a big range of responses to testosterone so we can’t pinpoint exactly how your body will respond to T. It could be anywhere within the range. It just depends on your body.
Also check out the changes your body makes with E.
FAQ: If I have PAIS, are my gonads 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.
Testes make hormones like T, which your gonads do.
At puberty, testes usually grow larger to produce sperm while still making T. Because testes need to respond to T to make sperm, your gonads probably didn’t grow quite as large and most likely 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. Can you call them testes?. If you want to, sure. Do they do everything a testis typically does (e.g. make sperm)? Most likely, 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).
Vaginas, Dilation, & UG Sinuses
Some young people with PAIS may have a vagina on the smaller side because it didn’t grow fully before birth; in others it can be larger. It just depends. For more on vaginas and ways to stretch them, check out our step-to-step guide.
Additionally, some young people with PAIS have a UG (uro-genital) sinus, meaning they have a vagina and urethra that join together inside the body. If this is the case, your gynecologist can help you understand the many options you have (including not doing anything at all, if you prefer). Remember that these types of treatments are optional, and you are the most important decision-maker in all of this. What you want and need is most important.
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 process 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
Your gonads might also have some reproductive potential and might eventually (with the help of science) help to make a baby.
Talk to your doctors and parents about this decision: it’s a big one to make, and removing the gonads means taking hormones for the rest of your life. On the other hand, changes from T & E are often irreversible. This means that if you get body hair or your voice gets lower, those changes will remain even when you don’t have those hormones in your body. Weigh the options, take some time, and decide what is right for you.
For more information on that decision, questions you need to ask your doctor, and things to consider, check out Taking the Wheel - Gonads - Should they stay or should they go).
Thinking about these changes and what to do can be hard. Should you take your gonads out and take E? Or should you leave them in to see how you feel with the changes from T? This is a good time to remember: during puberty, your mind changes a lot, as does how you feel about yourself. When thinking about hormones with parents and doctors, check out Your Brain & Mind section.
These discussions are a big one to have with your family and doctors. Some doctors talk about puberty blockers—medicine that keeps your gonads from growing and making T & E. This can temporarily stop your puberty and give you some time to decide what you would like to do.
Talking to your doctors, a psychologist, or even people who have gone through the same thing can be really helpful. After all, this stuff is complicated. It’s important to find doctors and people who will hear your thoughts, work with you, and help you understand your options. For more information on that decision, questions you need to ask your doctor, and things to consider, check out Taking the Wheel.
Some people PAIS feel that they’d like to live as male and choose to use their gonad-made T 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.
With gonads removed
Remember, your body will always have a little bit of T that comes from your adrenal glands. It may change some things, depending on how much your body can respond to T (like darkening/growing of your body hair.) It’s important to discuss with your doctor what hormones are right for you. Remember that PAIS covers a wide range, so we can’t pinpoint exactly how your body will respond to the T you have. It could be anywhere on the range. Typically, doctors think that how your body will respond is similar to how it responded in the womb as a baby.
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 able to react to T. Some changes from T may have happened before you were born.
Also, check out the changes E can make with your body and mind.
Remember: during puberty, your mind changes a lot, as does how you feel about yourself. When thinking about hormones with parents and doctors, check out Your Brain & Mind section.
Your body can respond partly to T, and some people with PAIS feel that they’d like to live as male and choose to take T 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.