Intersex Health
“Intersex” describes natural variations in sex characteristics (chromosomes, genitals, reproductive organs, secondary sex traits) that are different from what is considered typically male or female. Nearly 2% of people are born with intersex traits.
A person who is intersex may or may not identify as lesbian, gay, bisexual, transgender or queer (LGBTQ), or gender non-conforming or non-binary.
Common Health Conditions
Intersex is not a medical problem, but due to stigma and lack of awareness, intersex people face unique health challenges. This is especially true for younger people who often have less control over their medical care, more health disparities and sometimes receive medically unnecessary procedures. Such procedures, known as interventions, include any action to change intersex sex characteristics.
Health Care Rights
All intersex people have a right to competent, compassionate and respectful care. You have a right to be referred to by and to change your self-identified gender marker, name and pronouns.
Affirmative and Compassionate Care
Your health care providers should know about intersex traits, conditions and common experiences and be able to make referrals when needed. Your providers must give you ethical medical support that addresses stigma and discrimination affecting you or your family. It is a provider’s responsibility to give care that is honest, confidential and non-discriminatory.
As the patient, you should always be part of decision-making and give informed consent for any medical procedure. You have the right to information about your medical status and to your medical records. This includes your history of medical interventions, any involuntary procedures and information about your intersex status and traits.
Refusing Treatment
You can make your own medical decisions. You have the right to refuse any examination or treatment, including surgery. You can refuse treatment that is for education or research, including pelvic exams from someone who is not your primary care provider, such as students or other medical staff.
People younger than 17 have the same rights, including the right to refuse a procedure that their parent or guardian is requesting.
Information for Parents and Guardians
Be honest with your child and answer their questions or search for a professional who can. Do not lie or mislead your child about their intersex traits or medical history. Do not force your child to live as a gender that they do not identify with.
Take your child to peer support groups where they can meet other intersex children. Help your child understand that they can choose who they share their intersex identity with. If necessary, advocate for accommodations for your child in settings like school or camp.
Every parent or guardian's experience of having an intersex child is different. Find support in your friends and family, or in a support group. Consider speaking with a mental health professional.
Gender Identity
When your intersex child is born, doctors may assign the child a sex marker of male, female or X on their birth certificate. Regardless of this sex marker, you can raise your child as any gender or gender-neutral until they are old enough to express their own gender identity.
Some children may experience unwanted sex characteristics that do not match their gender identity. These children may have the option to receive medical interventions that delay puberty. In some cases, children may grow unwanted facial hair or develop a deeper voice. These children can talk to their providers about options, such as taking hormones.
Medically Unnecessary Interventions
If your child is born intersex, your provider may suggest an intervention to make their genitals look more like a common penis or vagina. Such medical interventions include cosmetic and elective surgery.
Cosmetic surgery changes the physical appearance of a body part. These surgeries are used to try and make a child’s genitals look “normal”. Genitals come in all shapes and sizes and there is no single definition of normal.
Elective surgery is a surgery that is not urgent or life-threatening. For example, removing a body part only for cosmetic purposes. Unless your child's health is at risk, the decision to remove ovaries or testes should be made when the child is old enough to consent and be involved in the decision-making process.
There is no scientific evidence that cosmetic or elective interventions help intersex children. Intersex traits rarely need immediate medical intervention.
Medically unnecessary interventions can lead to:
- Feelings of shame or depression
- Issues with trust and intimacy in relationships
- Sterilization/fertility issues
- Chronic pain
- Scarring
- Issues with bladder control
- Loss of sensation in genitals
- Loss of sexual function
Try to delay such interventions until the child can be part of the decision-making process. Surgeries for intersex infants should only be considered if it is necessary for the infant’s health, or if the procedure would be considered even if the infant were not intersex.
Shared Decision Making and Informed Consent
Parents and guardians do not have the right to make medical decisions for their intersex youth against their consent. Intersex youth should be involved in making decisions and give informed consent before any medical intervention. Youth can give full consent when they understand the nature, risks and alternatives to a treatment.
Build a multi-disciplinary treatment team that includes:
- Primary care provider/pediatrician
- Mental health specialists
- Social workers
- Pediatric subspecialists in endocrinology, urology, gynecology, genetics, neonatology, nursing and medical ethics
- Support groups which may include intersex adults and parents of other intersex children