With a Y chromosome and an unspecified DSD

Sometimes, doctors aren’t able to find the exact cause of a DSD. People often call this a ‘diagnosis most like PAIS (partial androgen insensitivity syndrome)’, even if changes in the testosterone receptor (a.k.a. ‘androgen receptor’) haven’t been found in the DNA or by genetic testing.

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. Your condition may cover a big range, from reacting a little to reacting more, so we can’t pinpoint exactly how your body will respond to T.

Also check out the changes your body makes with E.

Vaginas, Dilation, & UG Sinuses

Some girls with unspecified DSD 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 [Link to TTW Dilation].

Additionally, some girls with unspecified DSD 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.

FAQ: If I have an unknown DSD, are my gonads testes?  

The short answer is we aren’t sure.

When you were growing in the womb, gonad tissue (which is the same for everyone) probably changed into testicular tissue.

Testes make hormones like T, which your gonads most likely 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 might not have grown quite as large and might not make sperm. Essentially, they are not exactly like the testes of your guy friends. They are probably smaller and have 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)? Probably not.

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.)

What is your gonadal situation?

With gonads

Although we don’t know exactly what caused your DSD, chances are that you might go into puberty because your gonads are making testosterone (T) (a.k.a. androgen). Your body may only react partly to it. And, your body 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.

Since you have gonads, you can decide what you would like to do if you are going through puberty. You can decide to let your gonads grow, and see how your body reacts to the T and E it makes (some things you might look for are: Are your breasts developing? Do you have pubic hair? Is the clitoris growing?). Or, you can decide to remove them and take hormones to replace them (like Estrogen) instead.

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.

Also, check out the changes your body makes with the hormone E … & also your mind.

Thinking about these changes and what to do

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 this page again (PAY Your Brain & Mind).

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 section. Some people unspecified DSD 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

You have an unspecified DSD and no longer have gonads. To go through puberty, your doctor will need to provide hormones like estrogen (E). Since you have a Y chromosome, you won’t have a womb or a period.

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 body hair, body odor, etc.) Because we don’t know what caused your DSD, we can’t pinpoint exactly how your body will respond to the T you have. It could be anywhere on the range; doctors think it is likely related to how you responded to T 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 your body takes with the hormone E … & also your mind.*

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.

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 section.

Some people with 5ARD/17Beta HSD 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.