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Intersexuality Frequently Asked Questions Table of Contents

© 2000 Intersex Society of North America
This document is reprinted from the original at
http://www.isna.org/FAQ.html
You may wish to visit this original site if you have further interest in this topic.

Additional FAQS include:


What is intersexuality (hermaphroditism)?

Our culture conceives sex anatomy as a dichotomy: humans come in two sexes, conceived of as so different as to be nearly different species. However, developmental embryology, as well as the existence of intersexuals, proves this to be a cultural construction. Anatomic sex differentiation occurs on a male/female continuum, and there are several dimensions.

Genetic sex, or the organization of the "sex chromosomes," is commonly thought to be isomorphic to some idea of "true sex." However, something like 1/500 of the population have a karyotype other than XX or XY. Since genetic testing was instituted for women in the Olympic Games, a number of women have been disqualified as "not women," after winning. However, none of the disqualified women is a man; all have atypical karyotypes, and one gave birth to a healthy child after having been disqualified.

The sex chromosomes determine the differentiation of the gonads into ovaries, testes, ovo-testes, or nonfunctioning streaks. The hormones produced by the fetal gonads determine the differentiation of the external genitalia into male, female, or intermediate (intersexual) morphology. Genitals develop from a common precursor, and therefore intermediate morphology is common, but the popular idea of "two sets" of genitals (male and female) is not possible. Intersexual genitals may look nearly female, with a large clitoris, or with some degree of posterior labial fusion. They may look nearly male, with a small penis, or with hypospadias. They may be truly "right in the middle," with a phallus that can be considered either a large clitoris or a small penis, with a structure that might be a split, empty scrotum, or outer labia, and with a small vagina that opens into the urethra rather than into the perineum.


What is androgen insensitivity syndrome?

Androgen Insensitivity Syndrome, or AIS, is a genetic condition, inherited (except for occasional spontaneous mutations), occurring in approximately 1 in 20,000 individuals. In an individual with complete AIS, the body's cells are unable to respond to androgen, or "male" hormones. ("Male" hormones is an unfortunate term, since these hormones are ordinarily present and active in both males and females.) Some individuals have partial androgen insensitivity.

In an individual with complete AIS and karyotype 46 XY, testes develop during gestation. The fetal testes produce mullerian inhibiting hormone (MIH) and testosterone. As in typical male fetuses, the MIH causes the fetal mullerian ducts to regress, so the fetus lacks uterus, fallopian tubes, and cervix plus upper part of vagina. However, because cells fail to respond to testosterone, the genitals differentiate in the female, rather than the male pattern, and Wolffian structures (epididymis, vas deferens, and seminal vessicles) are absent.

The newborn AIS infant has genitals of normal female appearance, undescended or partially descended testes, and usually a short vagina with no cervix. Occasionally the vagina is nearly absent. AIS individuals are clearly women. At puberty, the estrogen produced by the testes produces breast growth, though it may be late. She does not menstruate, and is not fertile. Most AIS women have no pubic or underarm hair, but some have sparse hair.

When an AIS girl is diagnosed during infancy, physicians often perform surgery to remove her undescended testes. Although removal of testes is advisable, because of the risk of cancer, ISNA advocates that surgery be offered later, when the girl can choose for herself. Testicular cancer is rare before puberty.

Vaginoplasty surgery is frequently performed on AIS infants or girls to increase the size of the vagina, so that she can engage in penetrative intercourse with a partner with an average size penis. Vaginoplasty surgery is problematic, with many failures. ISNA advocates against vaginal surgery on infants. Such surgery should be offered to, not imposed on, the pubertal girl, and she should have an opportunity to speak with adult AIS women about their sexual experience and about surgery in order to make a fully informed decision. Not all AIS women will choose surgery.

Some women have successfully increased the depth of their vagina with a program of regular pressure dilation, using aids designed for that purpose. Contact the AIS Support Network.

Physicians and parents have been most reluctant to be honest with AIS girls and women about their condition, and this secrecy and stigma has unnecessarily increased the emotional burden of being different.

Because AIS is a genetic defect located on the X chromosome, it runs in families. Except for spontaneous mutations, the mother of an AIS individual is a carrier, and her XY children have a 1/2 chance of having AIS. Her XX children have a 1/2 chance of carrying the AIS gene. Most AIS women should be able to locate other AIS women among siblings or maternal relatives.


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Last Updated: 15 March 2016
Reviewed by Harry Croft, MD

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