"AIS, Androgen Insentivity Syndrome"

I have been attending hrt/gyne for 55 years. When I was 4years old my mother discovered a lump on my side and after tests and X-rays it was discovered I was born with AIS. Androgen Insensitivity Syndrome. This means, although I was born female, my genetics are male. I attended the children's hospital at the Royal Victoria hospital and later, in my teens I switched to the adult outpatients.

I had my first operation at 5 years old and my second operation when I was 21. They removed a gonad each time. Growing up I always thought it was ovaries that needed removed, I was never corrected and left to believe this. When I was 53 years old I was asked by the hrt doctor if I'd ever been told what I'd been born with and I was really confused. What I'd always assumed was obviously a lie. She explained that my mother never wanted me to know. She never wanted me to feel different from others so they hid this from me. Obviously I was a bit traumatized by this, but suddenly everything growing up, made sense. All the visits to the hospital, sometimes three times a year, every year. The tests, the internal smears and the row of young doctors who used to stand at the bottom of the examination couch, taking notes. Having to stand almost naked as they examined my breasts. I was young and embarrassed. I was in my teens after all.

The Royal hospital is a teaching hospital and AIS is quite rare. Students would be sent to sit in on my examination, learning how to deal with other cases. At 22 I was married to my soul mate and went on premarin 1.25 mg tabs. This was after numerous tablets to find the right one. This is pregnant mare's urine. Pre, mar,ine. This has kept me sane. Hahaha. I was always flamboyant, full of mischief, happy, always in the middle of something exciting. This is a trait of AIS. After my doctor retired, he made sure I would always be seen by HRT and looked after. I met Philomena, the hrt/gyne nurse when she started working in the hospital as a young girl. We have completed this journey together, myself as the patient and her as the nurse who comforted me when they took bloods ect. I still attend the Clinic and still see Philomena.

I know my story might sound sad or unreal to readers but I've had the most wonderful life, I'm with my husband 41 years and he's still my rock. I'm still a little bit of crazy. To anyone who is diagnosed with this condition or maybe a parent trying to come to terms with it. Be honest with each other, my mother didn't have great support and mostly because of the times and the fact it is quite rare. Today, there is so much help and support. I never told my mother I knew. It was her secret, when she died she never knew I was aware of this. It took me a while to adjust to this knowledge, I looked at myself and realized I am ME. My husband said when I told him . I always knew you were special. I'm not embarrassed or shy to tell people. I hope anyone reading this is in a position to pass it on to someone who needs reassurance. Someone who has just been diagnosed and feeling confused. There is loads of help, people who care, fantastic doctors and specialists. Remember. You are soo special. Own it. Xx