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FAQs - AIS-DSD Support Group

FAQs

 

These are just a few of the most frequently asked questions. If you have others, please feel free to contact us and we will connect you with others who can help.

questions

What does Intersex mean?

Intersex describes someone born with one of many different conditions (often called a “DSD”) causing variations of internal and/or external sex anatomy, putting their physical sex technically somewhere between the male/female spectrum. Intersex however does not necessarily mean one’s gender is between male and female – most intersex people identify strongly as either male or female. Others feel more in between. Gender is a choice, whereas one’s sex (male, female or intersex) is a physical fact.

So, what is a DSD?

DSD stands for “Difference of Sex Development”. DSD is a broad term that covers a spectrum of intersex conditions. Some occur in 1/100 people, and others are much more rare. DSD are generally thought to occur in 1/2000 people, and although that’s as common as being born a redhead, not many people have heard of them! There are three different areas that can be commonly confused when discussing the effects of DSD. Phenotype (physical appearance), gender (how you feel inside) and sexual preference (who you are attracted to) are all things to consider. A diagnosis does not change your gender or sexual preference. Only you can decide that.

How do you diagnose a DSD?

A DSD takes several steps to diagnose. A diagnosis can happen at any time in life. Phenotype (physical appearance) is often a first cue for young individuals. For others, it can be a hernia or a late menstrual cycle. After a doctor decides to investigate for a diagnosis, a quick test (karyotype) can determine if the individual has XX (typical female) or XY (typical male) genes. Blood may be drawn to measure hormone levels, and provide material for genetic testing. A genetic test can look at the individual genes that typically cause a difference of sex development and pinpoint where the difference occurs in the individual’s DNA. In other cases, the difference is known to be inherited in the family.

So if I’m XY, am I a boy (male) or a girl (female)?

Only you can answer this. You are the same person you were before you discovered your DSD, and only you know who you are and whether you feel your gender is boy or girl. 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. This is an important conversation to have with your parent and doctor. While most conditions do not require surgery, in some cases surgery is medically necessary. The important thing to remember is that everyone is different and it is okay to be who you are!

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?

Yes. For some intersex conditions or DSD, biological children are a possibility. Technological developments are being made every day in reproduction. Your ability to provide genetic material for biological children varies from DSD to DSD. It is a great question for your doctor.

My mom’s been telling me that I will have something like a period or a small period. Is that true?

This depends on your DSD. For example, those with Swyers Syndrome may have this possibility, while those with Androgen Insensitivity Syndrome may not. A period can occur if the individual has a uterus.

Why do most people not know anything about intersex and DSD?

While intersex conditions are not that uncommon, they are usually invisible. In our society it’s generally considered uncomfortable to talk about issues related to sex and anatomy. Historically, children have been raised to live in secrecy about their condition causing unnecessary shame, but happily, that is changing! It is one of our support group’s goals to help spread education and understanding so that more people are aware of differences of sex development in the future and children and their families can live more openly with their difference.

As a girl, am I going to need vaginal dilation and, if so, how do I know?

Some girls do need dilation and some do not. Dilation is needed when the vagina is either shorter and/or narrower than preferred for comfortable intercourse. If you feel you are ready for intercourse, this may be something you want to bring up with your physician. 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. Contact us here to be connected to other teens/young adults from the support group.

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