Navigating Intersex Healthcare: My Odyssey

I was born in 1965 with what the medical community called “ambiguous genitalia.” My initial announcement as a boy was called into question upon closer assessment of my atypical anatomy by medical specialists at a children’s hospital in Chicago. That team of medical experts included a pediatric urologist and a pediatric endocrinologist, as well as a prominent pediatric surgeon, who was at that time presiding president of the relatively newly established American Pediatric Surgeons Association. I have wondered over the years whether, or to what extent, that status and position had any important impact on the unfolding of my medical case.

Just over 100 days after my birth, I was surgically and socially reassigned female, and renamed Cynthia. My mother and physician father, ages 25 and 30, respectively, with two young sons at home, did the best they could to move ahead in life as a young family. Part of our family story is that my unusual birth contributed to my parents’ decision to move away from Chicago, where both of my parents had been raised and wanted to settle, and where my father had many professional opportunities. We relocated to Southern California to make a “fresh start” where no one would know the dark secret too terrible to be shared with any beyond a small circle of close friends and family. It would never be talked about openly.

With the exception of the rare and dreaded occasions of medical appointments with my primary care physician, or maybe an endocrinologist to renew hormone prescriptions, my parents chose to have me travel from our home in San Diego to a clinician in Los Angeles, away from my father’s medical colleagues. This decision was puzzling to me at the time, and maybe more so now. These trips were a source of considerable stress and anxiety, as I had no idea of what to expect; my mother told me only that treatment would “help me get my period started.” I was instructed to tell my friends and teachers that I was taking off school on a weekday to go on a “shopping trip” with my mother. As far as I know, these trips were never discussed at home with my older brothers. I heard years later that my parents disclosed some information about me with my brothers when my parents travelled outside the country. They felt that my brothers should know what had happened to me in the event of a catastrophic accident that might prevent my parents from telling me themselves. I suppose they believed that I wasn’t ready at the time to be told my own life and medical history. I can’t say for sure.

I don’t want to judge my parents too harshly for how they handled my medical care. I know that it was an extremely stressful and uncertain time for them, and peer support, which I know now is so vitally important for both parents and young affected individuals like myself, was not made available to us. I never thought to ask about such help, or even consider the idea that anyone else would be in a similar situation like mine. I don’t think I would have been even remotely comfortable or willing to discuss it openly at that point.

In my early twenties, I had to face another milestone in my journey and in my interactions with the medical community. I had yet to have the vaginoplasty I was told I “needed.” There was no discussion as to whether or not I wanted it or not. It just had to be done, and I was aware of the limitations I had at this vulnerable time in my life when my peer group was sexually active and I was not. My awareness of the obstacle posed by my difference made me avoid the topic of dating; it was difficult even to think about the possibility of a romantic relationship. I put it out of my mind, but I knew that it was a significant concern for my parents. My physician father did most of the prodding to get me to acknowledge the reality...