Although we don’t know exactly what caused your variation, chances are that you may be going into puberty because your gonads are making testosterone (T) (a.k.a. androgen). Your body might only be able to react partly to it, but your body might also use T by converting it to the hormone estrogen (E).
Since you have gonads, you can decide what you would like to do now 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: Do you have breast changes? Do you have pubic hair? Are your genitals growing?). Or, you can decide to remove them and take hormones instead. There are risks and benefits to both. For some people who have unknown DSD conditions, doctors may recommend monitoring how puberty is going and—sometimes—providing extra T if it’s needed.
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.
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. Click here for more on gonads and decisions on whether or not to keep them.
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.
We don’t know what caused your DSD, 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).
Some guys with an unspecified DSD 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. Some doctors might have given you extra T when you were a child, to see if your penis would grow further.
During puberty, how much a penis grows depends on how the body reacts to the T it has. It’s like height—you never really know what size you will be. If you want to know more about taking the wheel in your care, relationships, and sex, check out Let’s talk about Sex and In Your Care.