Who are intersex people?

The term 'intersex' refers to people who do not fit the binary model of sex — male or female. You may have differences in your:

• chromosomes
• hormones
• anatomy — including genitals

In medicine, intersex variation is also called 'differences in sex development' or disorders in sex development' (DSD).

Intersex people have a variety of bodies and identities. You may identify as male, female or neither.

What are the features of intersex people?

There are more than 30 different intersex variations. They can affect you in different ways. For example, you may:

• make more or less oestrogen or testosterone (sex hormones) than expected
• be more or less sensitive to these hormones
• have differences in the size and appearance of your genitals, both inside and outside of your body
• have variations in your X and Y sex chromosomes

For most intersex people, these differences are not noticeable to others in everyday situations.

What causes intersex variation?

Intersex variation can happen because of differences with:

• your genes
• how your body responds to sex hormones
• both your genes and how your body responds to sex hormones

This can be inherited. Often there is no clear reason why this happens.

How common is intersex variation?

It's hard to know the exact number of people with intersex variations. This is because some people may not know that they have intersex variation.

Intersex variation happens in about 2 in every 100 births. This is about the same as the number of people with red hair.

The most common intersex variations are due to differences in chromosomes, such as:

• Klinefelter (XXY) syndrome
• Turner syndrome
• triple X syndrome

Intersex variations to do with genitals that look different are less common.

When should I see my doctor?

The care you receive from your doctor will depend on the types of concerns you have and your, or your child’s, stage of life.

At birth

Doctors will check your baby for intersex signs soon after birth. If your baby's genitals look different, they may arrange some tests. These can include:

• an examination by a specialist
• an ultrasound — to look at their internal organs
• blood tests — to check their hormone levels

At puberty

Speak to your doctor if you have any concerns about your child's development at puberty. For many people with intersex variations, their variation is not visible externally.

As an adult

For some people, intersex features only become clear later in life. This can be when you:

• have a hormone imbalance
• have sexual health concerns
• are trying to have a child

Does intersex variation need treatment?

Many types of intersex variation do not need any medical care. It's helpful to understand what to expect as your child grows older.

Most people with intersex variations are healthy. Some physical health issues are linked to specific intersex variations. These can include problems with:

• bone density
• weight
• your heart
• your joints
• your fertility

For some people, there may be an increased chance of certain cancers.

You should talk to your doctor to understand any issues and risks linked with your intersex variation. This will help you to make the best choice about your care and treatment.

Hormone therapy

You may need hormone therapy.

Psychological support

A psychologist can talk with you about:

• body image
• relationships
• sexuality

Surgery

Surgery remains the most controversial area of intersex care. In the past, surgeries were performed on intersex babies. There is a strong move to ban surgeries on young children until they can consent for themselves.

Your doctor will consider and talk with you about:

• your appearance — surgery may be considered to change the appearance of your genitals
• the impact on your body's functions
• your cancer risk

Delaying surgery allows time for exploration of gender identity, which may differ from your assigned sex.

Fertility treatment

Some intersex people may seek medical treatment later in life to help them get pregnant.

Fertility counselling can help support people with intersex variations and their partners.

Gender affirming care

You may wish to access gender affirming care if you happen to be transgender or gender diverse.

How is gender assigned in babies with intersex variation?

Sex assignment is an issue for a small number of intersex babies.

If you're a parent of an intersex baby, it's OK to delay announcing the name and sex of your child until you are ready.

You could say that:

• there is some uncertainty and doctors will have more news in a few days
• you're well and mother and baby are both resting

The decision to raise your baby as a girl or boy is an important decision.

Your health team can support you in making the decision. But it's also only a decision for now. Only your child will know if they identify as male or female.

Are people with intersex variation transgender?

Intersex variation is not the same as being transgender. Transgender is when a person identifies as a gender that is different from the sex they were assigned at birth. This is also known as gender incongruence.

People with intersex variations may identify as any gender or sexuality.

Resources and support

The following organisations offer information and support:

• Androgen Insensitivity Syndrome Support Group Australia (AISSGA)
• Australian X and Y Spectrum Support (AXYS) — for people with X and Y chromosome variations
• Congenital Adrenal Hyperplasia Support Group Australia (CAHSGA)
• Intersex Peer Support Australia
• Turner Syndrome Association of Australia

For more information and support, visit InterAction for Health and Human Rights.

You can also call the healthdirect helpline on 1800 022 222 (known as NURSE-ON-CALL in Victoria). A registered nurse is available to speak with 24 hours a day, 7 days a week.