Junior hospital doctors were paraded past my vagina when I was 14 or 15. Not once was I asked how I felt about any of what had transpired. I was a patient with a terrible secret that even the doctors and my own mother couldn't, or wouldn't, discuss. Doctor Patient Problem not fully male not fully female Cause faulty gene presence of unwanted hormone Concern gender identity coital adequacy, fertility Experience of AIS vicarious, via patient lived, first-hand Policy secrecy disclosure Doctors see a failure to virilise and trace the problem back to a 'faulty' gene, but XY women experience a failure to fully feminise. They trace the problem back to the presence of an unwanted hormone which inhibits the development of uterus and tubes.
Language makes the problem worse.
Doctors see the male label and worry about gender identity, but AIS individuals experience a female body and worry about infertility and sexual adequacy. Therein lies the major difference. For doctors, AIS is a condition to be known about only via their own or other patients, but for XY women it is a lived experience. In 1993 the Androgen Insensitivity Syndrome Support Group was formally established in the UK and has done much to persuade the medical profession that it is disclosure and not secrecy that is in the patient's best interests. The group provides support for affected individuals and families and aims to break the taboos and secrecy that surround the condition.