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But even so, surgery continues to be practiced on children with atypical sex characteristics too young to participate in the decision, when those procedures both carry a meaningful risk of harm and can be safely deferred.

Some intersex traits—such as atypical external genitalia—are apparent at birth.

Many intersex people did not learn about their conditions until they accessed their medical files as adults—sometimes as late as in their 50s.

Ruth, now 60, spent much of her youth questioning the constant medical attention, including surgeries, she received in her early childhood in the 1960s.

But in recent decades, many doctors have defaulted to advising early irreversible surgery on intersex children.

These operations include clitoral reduction surgeries—procedures that reduce the size of the clitoris for cosmetic reasons.

Such surgery carries the risk of pain, nerve damage, and scarring.

Ruth told Human Rights Watch: “After my vaginal repair surgery, I had my first encounter with a truly compassionate and candid doctor.

Complete androgen insensitivity prevents the penis and other male body parts from developing. The complete form of the syndrome occurs in as many as 1 in 20,000 live births. A person with complete AIS appears to be female but has no uterus, and has very little armpit and pubic hair.

At puberty, female sex characteristics - such as breasts - develop.

Growing pains: Pagonis said she always felt different with constant hospital visits but didn't learn the full truth about her condition until a college instructor described the hormone syndrome one day during class Androgen insensitivity syndrome (AIS) is when a person who is genetically male (who has one X and one Y chromosome) is resistant to male hormones (called androgens).

As a result, the person has some or all of the physical traits of a woman, but the genetic makeup of a man.

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The 29-year-old from Chicago has Androgen Insensitivity Syndrome (AIS), a very rare disorder affecting 1 in 20,000 which prevents a womb from growing and causes testes to grow in the abdomen or other unusual places in the body.

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