I was born in the 1980s, and much to my parents surprise, the doctors could not say whether I was a boy or a girl because my body had ambiguous genitalia. They then conducted a chromosome test and the result was XX chromosomes. I was assigned female and only later was diagnosed with congenital adrenal hyperplasia (CAH). Fortunately for me the endocrinologist who treated me did not mention the option of surgery, so my medical treatment consisted only of taking cortisol. Apart from this, from the time I turned one, I was subjected to genital examinations twice a year, during which the endocrinologist would touch my genitals and look to see how they were developing.
These unnecessary and intrusive examinations had a profound effect on me. As a young child, I did not understand why I had to lower my pants in front of a stranger—the endocrinologist—and let him touch me. The fact that my mother was present, and approved of this was something that made me feel completely helpless. All this seemed very strange to me; I found it confusing, and terribly uncomfortable, and I just felt it wasn’t right.
I remember the doctor always spoke as if I wasn’t right there, and I did not always understand everything the doctor said when I was young, because of all the medical terms he used. I grew up with a feeling of being “inadequate,” of having a sense that something was wrong with me, though I didn’t know exactly what. These exams lasted until I was about 12 years old. Years later, as I began my adult, sexual life, I realized how much those displays had affected me emotionally.
I discovered what was “wrong” with me during sex education classes in the first year of high school. There was a class session in which two images were shown: one displaying the external female sex organs, and the other the male sex organs. I noticed that my body was not like either of them. I was very distressed, thinking “I have deformed genitals!” I feared I could not perform sexually as either a man or a woman. I became very depressed. I was sure nobody would want me, that I would never have a relationship. I was unacceptable, “abnormal,” or at least that is what the doctors had said. And in any case my parents never spoke of it, and I didn’t know that I had CAH.
Skip forward a few years: I was still looking for answers, I found my medical file and read in the documents “pseudo–hermaphrodite,” and [End Page 95] “congenital adrenal hyperplasia.” I searched the internet, but only found medical opinions that said that in the case of genital ambiguity, the best option was surgery. I wondered to myself: “Why didn’t they operate on me?”
I put the question to my parents, and, at fifteen, I found myself being examined once more in the doctor’s office, this time to consider the possibility of a genital surgery which might once and for all, I believed, make me a “normal” person.
I have never told anyone outside my family before, but one of those exams was the most humiliating experiences of my life. One doctor wanted to speak with me alone, so she made my mother wait outside the exam room. My mother agreed, thinking that after the doctor talked with me, my mother would be able to be present during the rest of the exam. The doctor asked me questions, some of which made me very uncomfortable: “Do you feel good about being a woman”? Did you ever feel like a man? Why don’t you dress up more, use more makeup? Are you a lesbian? Have you ever had sex? She then said she wanted to see my genitals. I felt awful and wanted my mother present, but I also wanted it to be over quickly, and said nothing. Examining my genitals, the doctor told me they “would not be adequate for sex,” and that she needed to “perform surgery.” Something else that made me uncomfortable was the presence of another doctor in...