Disorders of Sex Development

By OBOS Anatomy & Menstruation Contributors | March 31, 2014

Disorders of sexual development (or DSDs) are conditions in which a person is born with sex chromosomes, external genitals, or an internal reproductive system that is not clearly male or female. The clitoris may be larger than usual, or the vagina may be small, lack an external opening, or be absent altogether.

DSDs are not always visible by looking at the outside genitals; for example, a person may be born with external female genitals but with male chromosomes and internal testes (male reproductive glands) rather than ovaries.

For many years, the term “intersex” has been used by and about people born with genital or reproductive anatomy that is not clearly or exclusively male or female. Recently, concerns about the stigma sometimes associated with the term “intersex,” along with advances in treatment and diagnosis, have led to the use of the term “disorders of sexual development” in its place.

There is also some controversy over the choice of the word “disorder” rather than “difference” or “divergence.” In her article “Divergence or Disorder? The Politics of Naming Intersex,” Elizabeth Reis argues that the term disorder is “problematic, because it implies medical conditions in need of repair, when some intersex anatomies, though atypical, do not necessarily need surgical or hormonal correction.” She advocates for a new term that she believes is less pathologizing: divergence of sex development.

When DSDs are detected in infants, most are surgically assigned a female or male sex at birth, and many discover that their internal organs are different only when they reach puberty. They may not mature physically in the way a typical girl or boy would at that age; for example, those assigned female may not menstruate.

The traditional medical model of treatment for babies born with DSDs, developed in the 1950s, involves using surgery to alter a baby’s genitals to look clearly male or female. This practice is based on the assumption that altering the genitals to look as typical as possible and keeping the condition hidden are the only way these babies (and their parents) can avoid emotional trauma and live a “normal” life.

There is growing controversy over the practice of surgically altering babies born with DSD. Often the surgeries themselves create health problems, impair sexual functioning later in life, and contribute to emotional trauma. Angela Moreno, author of the essay “In Amerika They Call Us Hermaphrodites,” describes her experience in the 1980s:

When I was 12, I started to notice that my clitoris (that wonderful location of pleasure for which I had no name but to which I had grown quite attached) had grown more prominent. Exactly one month later, I was admitted to Children’s Memorial Hospital in Chicago for surgery. They told me a little bit about the part where they were going to “remove my ovaries” because they suspected cancer or something like that. They didn’t mention the part where they were going to slice off my clitoris. All of it. I guess the doctors assumed I was as horrified by my outsized clit as they were, and there was no need to discuss it with me.

After a week’s recovery in the hospital, we all went home and barely ever spoke of it again. I’m now 24. I’ve spent the last 10 years in a haze of disordered eating and occasional depression. Four months ago, I finally got some of my medical records from Children’s Memorial Hospital in Chicago. They are shocking. The surgeon who removed my clitoris summarized the outcome as “tolerated well.”

Many people with DSDs and their advocates now believe that cosmetic genital surgery should be performed only when a child or young adult is old enough to make his or her own decisions.

Organizations such as the Accord Alliance and the Androgen Insensitivity Syndrome Support Group are fighting to end the secrecy and shame around DSDs, to develop better approaches to health care, and to create support for healing emotionally from well-meaning but misguided or involuntary medical interventions.

A woman in her 20s talks about the healing this movement brought her.

At the age of 18, a workshop on intersex changed my life. I was finally able to get angry at the way I had been treated by doctors, about the assumptions that had been made about me and my body, and about the pressure put on me by doctors that I need to be “fixed.” I made the decision that I would keep my body as it is and have finally learned to love and enjoy my sexuality again.

I really believe that the stigma or shame that is used to justify operating on intersex people is a result of this being kept such a secret. The idea that those of us outside the “norm” must conform to the status quo is absurd! If we were all raised with the understanding that not all people are male or female, it would not be so traumatic for those of us outside of the sex binary.