Cindy's Story

[Received Apr 2003]

My name is Cindy; I am a Complete AIS woman who only learned this fact in 1991. I am an administrator at a large University (for nearly 25 years) and also a part-time professor in the university's School of Business. I was born in Massachusetts in 1956, an only child. I am now 46, and a middle-aged, feminine woman, who is overweight, but luckily carries the weight on a 6 foot frame. I am also a lesbian. I was monoga-mously involved with my partner for 20 years until she died of cancer in 1995. I have now shared a home and life with my current partner for the past three years.

Unbeknown to my family, I was born with this intersexed condition and only learned the basics about my AIS syndrome at 17 - when puberty failed to occur. As is the experience with many AIS women, my physicians did not disclose the true nature of my condition to me or my parents in my late teenage years.

These physicians had ordered numerous medical procedures when I was 17 including a laparoscopic surgery, many x-rays, full blood workups, ultrasounds and chromosomal studies. But medical professionals apparently withheld the results. It's possible they could have been inept, but I believe they withheld the truth. I was from a very low income, unemployed family with poorly educated parents growing up in a city of 200,000 in New England. I don't think the doctors felt my parents and I could be told the details and understand all the ramifications of my intersexed condition. Instead, they told my family the chromosome and genetics tests they ran were all normal. I was just born without all my female reproductive organs. We were told I didn't have a uterus but my ovaries were perfectly normal, they just weren't uh "connected" due to the absence of a uterus - and "oh, by the way, you'll never have a menstrual cycle and you can't have any children…" With that news I left for college and a life in the Midwest.

By age 35 I was anxious to learn more about my health situation and that led me to being told by more caring gynecologists I had Androgen Insensitivity Syndrome and needed surgery. I received three expert opinions (two gyn's locally, and one endocrinologist in Indianapolis at a major research hospital) before even deciding to have surgery, as I "felt fine"! Plus, I had lots of energy, plenty of libido and wondered why I should go under a surgeon's knife. Finally, the physicians persuaded me with all the facts about AIS and the high risk of cancer -- I had the gonadectomy in 1992.

After coming home from the hospital and surgery, I noticed immediate changes - a less energetic me, no sex-drive (it was like a light switch was flipped off) and overwhelming menopausal symptoms. Initially, I refused hormone replacement therapy, but the night sweats, hot flashes and heat headaches were so severe I went on HRT within a year. I have since taken a heavy dose of estrogen for the past decade and continue to do so in hopes it will help the low energy, low libido, and provide me the necessary protections I need as I age. At the same time I learned of my AIS condition, I was facing other major life changes. I was caring for my terminally ill partner and was on leave from the University until her subsequent death. Afterwards, I was confronted with the deaths of both parents and maternal grandparents within a five-year period. Given all this I struggled with some binge eating disorder issues and major weight gains.

Although most CAIS women lead heterosexual lives, I believed both genetics and childhood environment pushed me into becoming a gay woman. Ten years of childhood sexual abuse combined with the AIS, I believe, doubled the odds I'd be gay. In the past decade I have received excellent counseling support which allowed me to deal with surviving childhood sexual abuse, being gay and more open about my orientation, learning of my AIS, having the gonadectomy and losing nearly all my family in just a few short years.

Despite these tough issues, I strive to be upbeat and live my life positively knowing that I was born a woman, just like my birth certificate says and as all outward appearances indicate. I have always desired to be just that - a woman. I just took a more circuitous path to becoming a woman than others take. I am most grateful for my spirituality, my loving partner and finding the AISSG and the fellow orchids on the [N. American AISSG] e-mail listserv. I am humbled and in awe of the life experiences in these personal stories and the challenges all these women have faced.

One is not born a woman. One becomes one. ~ Simone de Beauvoir