Silvia's Story

[Received July 2009]

I started to feel that something was not right at about age 15 (no menstrual blood days, no breast growth). In usual school doctor checks, when we were in her room 15 girls at the same time I even lied so naturally that I have these days and very periodically. I was very scared of such days and never wanted them, so it came quite handy as well. I somehow even then realized that I was a bit different. Seems to me this knowledge of being different comes quite early.

At the age of 20 I went to a doctor with this problem and was sent to a geneticist to analysis. It came out I was having Swyer syndrome and XY chromosomes. The gynecologist also said in the checking of me that I am having a penis. I was so shocked about it and wanted to beat her up in my mind for saying something like that and saying it in such tactless ways. They wanted to start operating on me immediately for removing what was not supposed to be there. They did not intend to make my clitoris smaller, they wanted to remove the testes tissue inside. I did not like how they tried to corner me to do something I was not ready to do and I vanished from their view for 5 years.

I fell in some kind of catatonic life, I thought of myself as a freak and hoped to die soon, although I never laid a hand on myself. At the age of about 25 I decided to see a doctor, to get a second opinion. They came to the same conclusion still and made the operations [gonadectomy] and I am on oestrogen pills since then. Although now I am not so sure I should have let them operate on me at all. My clitoris is still as big as before, and seems like it does not make men feel like it is a penis. So it is not too big. I also can have usual sex with men.

Since then I have had a bit extreme ways of living like being not very cautious about my sexlife and needing too many partners because of being in need of reasuring that I am desireable and really a woman, although I look like a woman in every ways; I only have a lower voice and some beard growth in face. I had my first experience with a man only after these surgeries, because I was too scared of what would happen or come out if I went to bed with them [?before].

I don't trust and want to burden anyone in my family or friends circle with this information as it might quite possibly ruin my relationship with them. I have seen what this knowledge can do with people and I don't want to suffer any more than I already have because of it and I don't want them to suffer or blame anyone for it as well.

At least I know it is not inherited condition in my case. It still sometimes make me feel depressed and scared and confused, but now it has only occasionally such an efect. But I want to make me feel normal also from that part of my life, from the part of being someone with Swyer syndrome and to get to know how others cope with this problem and live their lives with it.