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Coping and support
By Mayo Clinic staffFemales with classic congenital adrenal hyperplasia — who are exposed in the womb to elevated levels of male sex hormones — are more likely than are girls without this condition to prefer typically male-gender roles and activities throughout their life. They may be more likely to identify as bisexual or homosexual.
Sexual problems are common among girls and women with congenital adrenal hyperplasia, including:
- Embarrassment about the appearance of genitals
- Uncertainty that intercourse will be possible
- Pain and bleeding during intercourse
- Discomfort telling a new partner about the disease
Early and steady support from family and health care providers can help girls grow up to have normal self-esteem and a satisfying social life. Make sure counseling is included in your child's treatment plan, and that you and your child's health care providers pay attention to her mental and emotional health as well as her physical well-being.
You can also help your child by resisting the urge to over-protect her, which may only convince her that she is different or limited. If you're having trouble coping with your child's condition or feel overwhelmed by worry, ask your doctor to refer you to a mental health professional. An experienced therapist can help you deal with your feelings and develop healthy parenting strategies.
- Parks JS, et al. Congenital adrenal hyperplasia and related disorders. In: Kliegman RM. Nelson Textbook of Pediatrics, 18th ed. Philadelphia, Pa.: Saunders Elsevier; 2007. http://www.mdconsult.com/das/book/body/208746819-6/0/1608/0.html. Accessed Jan. 13, 2011.
- Stewart PM. The adrenal cortex. In: Kronenberg HM, et al. Williams Textbook of Endocrinology. 11th ed. Philadelphia, Pa.: Saunders Elsevier; 2008. http://www.mdconsult.com/das/book/body/191205553-3/0/1555/0.html#.. Accessed Jan. 13, 2011.
- Farrrell TW. Congenital adrenal hyperplasia. In: Ferri FF. Ferri's Clinical Advisor 2011: Instant Diagnosis and Treatment. Philadelphia, Pa.: Mosby Elsevier; 2011. http://www.mdconsult.com/books/about.do?eid=4-u1.0-B978-0-323-05610-6..C2009-0-38600-6--TOP&isbn=978-0-323-05610-6&about=true&uniqId=230100505-53. Accessed Jan. 13, 2011.
- Congenital adrenal hyperplasia. The Merck Manuals: The Merck Manual for Healthcare Professionals. http://www.merckmanuals.com/professional/sec19/ch282/ch282e.html. Accessed Jan. 13, 2011.
- Nordenskjöld A, et al. Type of mutation and surgical procedure affect long-term quality of life for women with congenital adrenal hyperplasia. Journal of Clinical Endocrinology & Metabolism. 2008;93:380.
- Frisen L, et al. Gender role behavior, sexuality, and psychosocial adaptation in women with congenital adrenal hyperplasia due to CYP21A2 deficiency. Journal of Clinical Endocrinology & Metabolism. 2009;94:3432.
- Nippoldt TB (expert opinion). Mayo Clinic, Rochester, Minn. Feb. 18, 2011.
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