As a teen, you may feel alone and worry that no one understands you. Being intersex can feel especially lonely, but you are not alone. Talking with someone who shares your intersex variation can be a great comfort. When you’re ready, we recommend contacting us, and joining our Youth Facebook group. Joining a supportive group of people from all walks of life who know the challenges and the beauties of it all can be an important step in the healing process.
You will also have opportunities to connect in person at our Annual Conference. The conference features informative breakout sessions and fun activities, where many people forge lasting friendships.
Here are some of the most frequently asked questions that come up when people find they are intersex. Feel free to also contact us with other questions.
What does intersex mean?
Intersex is an umbrella term used for a person born with reproductive anatomy or chromosomes that challenge the typical definitions of female or male. Although being intersex is considered atypical, it is not abnormal. Intersex traits are estimated to occur in 1 out of 2,000 people, which is just as common as natural red hair. Intersex people, both real and mythologized, are present throughout recorded history.
So, what is a DSD?
DSD stands for Difference of Sex Development – a broad medical umbrella term that covers the spectrum of intersex variations. Some occur in 1 out of 100 people, and others are much less common. DSD’s are generally thought to occur in 1 out of 2,000 people, and although that’s as common as being born a redhead, not many people have heard of them. We prefer to use the word intersex because it is less clinical. Being intersex does not change your gender identity or sexual preference. Only you can decide that.
How is intersex diagnosed?
For some people, their intersex variations are obvious at birth, while for others it can show up around puberty or later in life. If a doctor decides to pursue a diagnosis, they will order a karyotype test to learn more about a person’s reproductive genes.
So if I’m an XY female, am I no longer a female?
You are the same person you were before you discovered you were intersex. Only you know who you are and whether you feel your gender is male, female, or none of the above. People with XY chromosomes can be female, and people with XX chromosomes can be male. A chromosome test does not tell you who you are. Only you know how you feel inside about your gender.
Do I need surgery?
Maybe, but probably not. While most people lead healthy lives without surgery, this is an important conversation to have with your parents and doctors and should not be taken lightly. Surgery is irreversible and many intersex people suffer long-term effects from unneccessary medical intervention or “normalizing” surgeries. The important thing to remember is that everyone is different, and there is a place for you in this world.
What is a gonad?
A gonad is an organ, either testis or ovary or ovotestis, that typically produces the hormones for sex development.
Have there been any technological developments for me to be able to have kids?
Reproductive medicine is advancing every day, and having biological children might be a possibility for you. It is a great question for your doctor, a reproductive endocrinologist, or a fertility specialist.
My mom has been telling me that I will have something like a period or a small period. Is that true?
This depends on your exact intersex variation. You may have a period if you have a uterus.
Why do most people not know anything about being intersex?
While being intersex is nothing new, we are usually invisible. In recent history, it’s been uncomfortable to talk about issues related to sex and anatomy. When children are raised to live in secrecy about their bodies, we cause a tremendous amount of shame. Happily, that is changing. One of InterConnect’s goals is to raise awareness of intersex variations, so we can live more openly in the future.
Am I going to need vaginal dilation and, if so, how do I know?
If you feel you are ready for intercourse, this may be something you want to bring up with your physician. Some people benefit from dilation, and some do not. It can be helpful if your vagina is either shorter or narrower than you prefer for comfortable intercourse. There are different options for dilating including dilator sets, vibrators, or working with a partner. Do what feels best for you. Several young adults who have experience with this are always open for questions.