CAH (a.k.a. Congenital Adrenal Hyperplasia)

As a girl with CAH, a lot is happening inside and outside your body.

First of all, CAH is an endocrine disorder affecting the adrenal glands. There are many other websites about how to take care of your body’s adrenal system, like CLIMB UK and About Kids Health . This section is mainly about CAH and differences in the body’s sex development, especially in girls with CAH.

For those of us with CAH, we have gonads called ovaries that work. Because girls with CAH have two X chromosomes and no Y, our gonads are ovaries that hold eggs, and produce estrogen (E). During puberty, we will likely begin to menstruate (a.k.a. have a period) and potentially be able to have a child using our eggs and uterus. 

Before you were born, your adrenal glands were very active and produced more T than usual. Because your body can respond to T, some changes from T may have happened then (like changing how your genitals look like on the outside by growing the clitoris,) Your body most likely has much less T now due to the treatment you are taking for CAH.

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?). Keep track of how your body is changing—this will help you, your parents, and your doctor take care of your body. In the Puberty: Outside section, we show a range of body responses to T. Also check out the changes your body makes with E.

Vaginas, Dilation, & UG Sinuses

Some girls with CAH 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 girls with CAH 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 CAH, are my gonads ovaries? 

Yes! Your gonads are ovaries and typically carry eggs and help to make things like periods and help make babies.