Nicky’s Story
I was born in 1943. This is relevant because Testicular Feminization, later to be renamed Androgen Insensitivity Syndrome was not identified until ten years later, in 1953. I was born apparently a normal female with a double hernia. The hernias, in the inguinal canal were causing me pain when I walked, so they were surgically repaired when I was 18 months old. This meant they pushed what were actually my testes into my abdominal cavity. There was apparently a report of some ovarian tissue being found in the hernia. I suspect that, because no-one in those days was looking for testicular tissue in a girl, what was actually testicular tissue was identified as ovarian.
When it was time for me to go through puberty, I was able to develop breasts. This was thanks to the excess testosterone produces by my testes being converted to estrogen. I never started to menstruate, nor did I develop the secondary body hair consistent with female puberty. Unbeknownst to me, my aunt (my mother’s sister) had the same condition. Her gynaecologist came to Vancouver when I was 16 and he examined me. He told me that he couldn’t feel a uterus and that I would never be able to have children. This was when I was told that my aunt had the same condition.
When I had a medical exam for university in 1961, My family doctor told me my vagina was somewhat shorter than normal. He suggested that, if I got engaged he would want to meet with my fiancé and myself before we go married. Then he said, maybe it would be best if I just met with your fiancé.
A few years later I did have a boyfriend. We tried to have sex, but it wasn’t going very well. I had moved to a new community and had a new job by then and so I was examined by my new GP. He asked If I were sexually active. I said I was trying but it wasn’t going very well. He told me I could have a surgery which might help. I needed to wait until my Medical insurance became active. He told me “in the meantime, carry on”.
My boyfriend and I broke up, so I didn’t pursue anything for a while. In 1968, I decided to pursue surgery. I was referred to Dr. Bryans the then head of gynaecology at UBC. He told me I might have a condition called testicular feminization. I might have male chromosomes. He did a test for Barre bodies (the X chromosome has more genetic material than the Y and in XX females the extra material can be seen at the edge of the cell) and there were none. I then had my blood tested too check the ratio of red to white cells and I tested male. At the time, we were years away from being able to test DNA. I had a vaginoplasty using a skin graft from my thigh, and an exploratory surgery to determine whether or not I had testes and, if they were present to remove them for fear of cancer.
“I thought I was doing fine with all this, but the emotions around it surfaced in 1972, and I did a resident fellowship at a place called the Cold Mountain Institute to deal with my feelings. This was a 3 month program.”
In 1992, a friend told me about an ad she had seen in the paper from a male to female transexual who was wanting to meet platonic female friends. I was intrigued, because I felt this was the closest I would get to meeting someone like myself. Leslie and I met, and we become friends. A year later, I realized I had deeper feelings for Leslie. We started a relationship and in 1994 we started living together. We got married in 2003, when same sex marriage became legal in BC.
We got our first computer in 1998. Thanks to the internet, I was able to connect with the intersex community for the first time. Thanks to Leslie’s encouragement, I decided to go public with my condition. I only ever got positive feedback.
Leslie was diagnosed with Parkinson’s in 2006. She passed away in 2013. I started going to conferences of the group which is now called Interconnect in 2014. I value the connections I have made in the intersex community.
The views expressed in the stories shared do not necessarily reflect the beliefs of Intersex Canada. This section of the website acts as a platform to project intersex voices, and empower intersex people and their loved ones.