Swati's Story

I was born in India, but moved west with my parents at the age of seven. There was no external symptom of anything being different with me, so I grew up with all the presumably normal experiences and expectations of an average girl.

Lack of menstruation by the age of fifteen convinced my parents to take me to a doctor. I was fortunate in having a doctor who believed in full disclosure - I was given the full genetic information, and access to a counselor. Soon after that I started studying at a medical college, and filled in the scientific details. Through this whole period my parents were pillars of support. I am not sure how much of the medical information got through to them, but they surrounded me with unconditional love. Of course, knowing only the cold, clinical details didn't keep me from feeling something of a freak - I couldn't quite imagine any other real person having this condition. My doctor had also mentioned the shortness of my vagina, and had mentioned that I would eventually need plastic surgery - a prospect that filled me with dread and kept me from intimacy for many years.

When I was twenty we moved back to India - to live in the heart of a very orthodox Hindu society. My first difficulty had to do with the menstruation rituals: in this society, the onset of menstruation is greeted by a party, and later women still spend the three days in public seclusion. And here I was not able to follow the rituals of the society and, in order to keep my condition a secret from the extended family, taking on the image of a modern woman disrespectful of tradition. The bigger difficulty had to do with the fact than 'nice girls' had arranged marriages, and both my parents and I were under a lot of pressure to do the right thing. How I wished I could do it! As a result, my poor parents are still considered somewhat irresponsible for not doing their duty towards me.

Finally I moved back west to do a Ph.D. The first breakthrough in my path of acceptance was seeing a doctor who presented me with a simple plastic tube and some K-Y gel, and recommended pressure dilation. This low-tech procedure was highly effective, though I sometimes wonder if the men I have been with were just too polite to say otherwise. At 31 I started my first serious relationship; being desired and loved even after he knew about the condition did much to remove some of the feelings of freakishness. And then, meeting the other women in the support group, and identifying myself and admiring myself through them was icing on the cake, and I finally started truly accepting myself.