Treatment of Androgen insensitivity syndrome

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Individuals with CAIS, and most with PAIS, will have their testes removed at some time to prevent them from possibly becoming malignant (cancerous). In the past, early surgery to remove the testes was preferred in the assumption that this avoided psychological problems during adolescence or young adulthood. However recently, surgery during the late teenage years has been favoured; the individual is then mature enough to be actively involved in surgical decisions.

Ultra sound examination can monitor for any early tumour development, which is very rare before this time. Surgery is then postponed to the late teenage years so puberty occurs due to the testes producing enough oestrogen to stimulate breast development.

In addition, many individuals with AIS choose to have vaginal lengthening surgery, which can be done at the same time. The lower two-thirds of the vagina may however be fully developed and sufficient for intercourse, therefore again the individual can be fully involved in decision-making.

Again historically cosmetic reconstructive surgery was performed in infancy, in those with PAIS with a female gender who have a degree of masculine genitalia at birth, however many professionals now advocate delaying this surgery until the individual is old enough to decide for themselves and give consent. Removal of an enlarged clitoris may potentially cause a loss of sexual sensitivity, although a type of surgery (clitoral recession) makes the clitoris less prominent while preserving most of its tissue, and so is thought to have less effect on sensitivity.

Adults and teenagers will be prescribed hormone replacement therapy (oestrogen) to maintain feminine characteristics, and prevent osteoporosis.

Individuals with PAIS brought up as boys often choose to have genital surgery to make urination in a standing position possible. They may also choose to have a mastectomy (breast removal) if breasts develop at puberty. They may be treated with androgens (testosterone and/or dihydrotestosterone, DHT).

In a family with a baby or young child with AIS, the parents will often need psychological support from a paediatric psychologist or psychiatrist to help them come to terms with their childâ€™s condition and to help them explain the condition to their child as they grow up. The parents may also wish to have genetic counselling to understand the condition, to identify carriers and to explain the risk of recurrence (25% for each subsequent pregnancy).

If AIS is diagnosed later, older children and their parents will need psychological support from a psychologist or psychiatrist experienced in intersex conditions.

Ideally a long-term relationship will be established with the professional so new issues can be addressed as the child gets older.

Lack of emotional support from health professionals for adults with AIS has been a criticism in the past although this is gradually improving.