Having partial or mixed gonadal dysgenesis means that your gonads are only partially developed. As a result, your body may not make a lot of hormones like testosterone (T) or estrogen (E).
Before you were born, your body probably had some hormones like T in it, and your body can respond to T. Some changes from T may have happened as a baby even if your body doesn’t have T now. For example, this might mean that your genitals didn’t grow very much 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 have either a little or some T.
Also check out the changes your body makes with E.
Vaginas, Dilation, & UG Sinuses
Some girls with MGD or PGD 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 dilation guide.
Additionally, some girls with MGD or PGD 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.
Genetics and PGD/MGD
Many young people with Partial or Mixed Gonadal Dysgenesis may wonder why their body developed that way. Most likely, your genes give your body instructions to develop that way.
For individuals with PGD, you likely will have an X and a Y chromosome that helped your body and gonads grow as they have.
For those with MGD, there are a lot of different combinations of chromosomes that you may have. Some people have XX chromosome, some have XY, and some have XX in some cells and XY in other cells, and we call this ‘mosaicism.’
Genes give your body a unique set up, and what genes you have are unique to you. This means it might be difficult to predict exactly what will happen for you at puberty.
What are my gonads like?
With MGD, gonads typically have 3 types of tissue in them: ovary-like tissue, testes-like tissue, and non-functioning tissue (called ‘dysgenetic.’) While there might be some hormones (T & E) and even egg/sperm, it isn’t clear whether or not babies can be made from them.
With PGD, gonads typically have 2 types of tissue: testes-like tissue and non-functioning tissue (called ‘dysgenetic.’) While there might be some hormone T produced and some sperm, it isn’t clear whether or not babies can be made from them.
What is your gonadal situation?
During puberty, your gonads may start to produce testosterone (T). Since your body can respond fully to T, it might mean things like a voice change, facial hair, or genital growth. You may also discuss the risks and benefits with your parents and doctor of whether or not to have your gonads removed and take hormones like estrogen (E) to start puberty. Although you have a Y chromosome, you may have a small womb; if you do, it might grow because of E.
Before you were born, your body had some T in it, and your body responded to it. Some changes from T may have happened as a baby, even if you don’t have T now. In the Puberty: Outside section, we show a range of body responses to T. When you go back, check out what happens when you have either a little or some T.
Also check out the changes your body makes with E.
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.
Some people with PGD/MGD 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.