5ARD or 17B HSD (a.k.a. 5 Alpha Reductase Deficiency Syndrome or 17 Beta Hydroxysteroid Dehydrogenase deficiency)

What is your gonadal situation?

With gonads removed

You have 5ARD or 17 Beta HSD and no longer have gonads. As a baby, your body either didn’t make T, and/or didn’t make another type of T called ‘DHT’. DHT is much more powerful than ordinary T. As a result your genitals may not have grown much.

To go into puberty and to help your body further grow as a woman, your doctor will probably give you hormones like estrogen (E). Since you have a Y chromosome, you won’t have a womb or a period.

That being said, your body can respond to T, and some people with 5ARD or 17 Beta HSD choose to take T instead and grow as a guy. It just depends on what decision and hormones are right for you.*

In the Puberty: Outside section, check out the changes your body makes with E. Also check out what happens when your body reacts to small quantities of T from the adrenal glands (like skin oil, body odor, and pubic hair).

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.

Hormones help each body develop into adulthood. Right now, it is important that you have the right hormones for your body. To help with this, your medical team and parents can help you think about what hormones are right for you and your body.

With gonads

You have 5ARD or 17 Beta HSD and have gonads. As a baby, your body either didn’t make T, and/or another type of T called ‘DHT’. DHT is much more powerful than ordinary T. As a result, your genitals may not have grown much. Since you have a Y chromosome, you won’t have a womb or a period.

As a teen, your body can now start to make T that can do lots of work, but still no DHT. Your body may make a little estrogen (E).

In the Puberty: Outside section, this means your body will grow and respond to T. It’s hard to know exactly how your body will change, but usually the genitals will grow larger and the body will respond to T (for example, some might grow some facial hair and the voice may deepen). When you go back, check out what happens when your body reacts mostly to T. Talk to your doctor more about what to expect. Your gonads might even one day have the potential (with the help of science) to help make a child with your genes, biologically.

Thinking about these changes and what to do can be really 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. We guarantee that everyone wants to hear your thoughts 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

Vaginas, dilation and UG sinuses

Some girls with 5ARD or 17 Beta HSD may have a vagina on the smaller side; in others it may be larger. It just depends. For more on vaginas and ways to stretch them, check out TTW Dilation.

Additionally, some girls with 5ARD or 17 Beta HSD have a UG (urogenital) sinus and have a vagina internally. This means that the vagina and the urethra 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!

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 it. 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.

Question: If I have 5ARD or 17 Beta HSD, are/were my gonads testes?

The short answer is both yes and no.

When you were growing in the womb, gonad tissue (which starts as 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. Your body and your gonads will respond to the T. Your gonads can probably grow a bit, however you need to talk with your doctor about whether or not they might be able to make sperm. Essentially, they are not exactly like the testes of your guy friends. They might be smaller and with a different set of things going on. Can you call them testes? Sure. Do they do everything a testis typically does (e.g. make sperm)? It depends on your body.