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There are many ways you can help children and their families get the care they need.
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.
Androgen insensitivity treatment at Boston Children's Hospital
At the Center for Congenital Anomalies of the Reproductive Tract At Boston Children's Hospital, our team of health care providers will help guide your daughter through her specific treatment process at any age.
Sorting through a diagnosis of androgen sensitivity can bring up complex emotions and questions about gender and sexuality that girls don't normally face. The Gender Management Service Clinic (GeMS) at Children's is designed to address psychosocial issues that may arise from disorders of sexual differentiation. Our treatment team includes urologists, endocrinologists and geneticists, as well as a research psychologist, social workers and nurses who run support groups.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”