Mary's Story

[Received Sept 2001]

When I was 12 I noticed that I was different from the other girls. I hadn't started to develop secondary sexual characteristics and I was taller and stronger than all of the females in my year at school. This didn't change, and all through my adolescence I had self-ostracised myself from my peers as I knew they were noticing too.

At the age of 18, I finally received an appointment with a gynaecologist as I hadn't started my periods and I was quite worried. I had a blood test and I was told that I would have to have a laparoscopy to see if anything was wrong. Within 3 months I had had my 'ovaries' removed, (because of cysts...I was told) and started on HRT. I didn't argue as I was young and naive. Due to the HRT I started to grow more pubic hair and my breasts slowly increased in size, so much that I actually bought my first bra.

I was married at 22 and was having terrible times with the HRT. I had been prescribed patches, to reduce spot bleeding and was having an embarrassing time at netball practice trying to cover them up, so I made an appointment with the GP. He had to leave the room during my visit and left my notes open on the desk and highlighted in my notes was a statement that I had XY chromosomes and I wasn't to know. I quizzed my GP when he got back and he was shockingly insensitive, saying that it was only HRT keeping me female and if I stopped taking them I would turn into a man!!!!!  This I couldn't understand as although I was flat chested and tall there was no way I had ever resembled a man and had once been offered an interview with a modelling scout.

Since then I feel I have been walking into a brick wall, as no-one will give me a straight answer to my questions. I am now 28 and in the past months, due to an unrelated illness, something is getting done about it. I am awaiting an appointment at a special genetic clinic, where I hope someone will make a proper diagnosis. I have been told that I have a rudimentary uterus and I had one ovary. That is my sole information to date.

I feel much happier knowing that other people have AIS and I can now that I have a name for it I can look up information about it in books and on the internet. I feel happier than I have done in years.

[Webmanager's Note: Not sure if Mary actually has AIS? If pubic hair developed then she can't have the Complete form of AIS, although women with the Partial form can have pubic hair, but she hasn't mentioned a larger than average clitoris which PAIS women of grades 5 and below would be expected to have. If she really did have an ovary, as opposed to a testis, this again excludes AIS. Maybe she has another XY condition like XY gonadal dysgenesis (Swyer's syndrome) in which streak gonads (testes) and a uterus can be present. Menstruation is possible in Swyer's women but bleeding, even spot bleeding, doesn't sound like AIS since there are usually no internal female organs above the upper vagina.]

[Mary emailed in October to say that her diagnosis had now been confirmed as Swyer's Syndrome]