Androgen Insensitivity | Diagnosis & Treatment

How is androgen insensitivity diagnosed?

Complete androgen insensitivity is usually not diagnosed before puberty, unless a lump is felt in the groin or abdomen, and it turns out to be a testicle during surgery. Usually, androgen insensitivity is diagnosed only after a young woman discovers that she hasn't started menstruation

Partial androgen insensitivity is usually discovered earlier in life because the baby will have ambiguous genitalia

A physician may use the following diagnostic tests to diagnose androgen insensitivity:
  • genetic testing
  • blood work to check the levels of testosterone, follicle-stimulating hormone (FSH) and luteinizing hormone (LH)
  • pelvic ultrasound

What are the treatment options for androgen insensitivity?

Girls with androgen insensitivity have a Y chromosome, which causes testes to grow. So, your daughter will have testes in her abdomen or groin that may appear as hernias. Treatment will involve surgically removing the testes during childhood or after puberty, because they are at risk of forming a germ line tumor.

Once the testes are removed, your daughter will need hormone replacement therapy with estrogen. She won't need progesterone because she doesn't have a uterus.

Since your daughter doesn't have an upper vagina, her vagina may be short. She may need surgery to lengthen it, but every girl is different and sexual intercourse also naturally grows the vagina. Before she becomes sexually active, she can use a vaginal dilator to gain some length. Your daughter may find the following guide from the Center for Young Women's Health helpful: Instructions on the Use of Vaginal Dilators.

What is the long-term outlook for a child with androgen insensitivity?

The outlook for a child with androgen insensitivity is good if at-risk testicle tissue is removed at the proper time. Women with androgen insensitivity won't be able to give birth to a child, because they don't have internal reproductive organs.