A Male Pseudo-Hermaphrodite: Jane Carden

Twenty five years ago, as my girlfriends were getting their periods, I was told a lie. It went something like this: “When you were born, your ovaries were twisted. And a very smart doctor discovered this because he saw that you had hernias. Well, these twisted ovaries here at risk for becoming cancerous. So, to prevent this from happening, when you ere just a baby, they removed your ovaries, to make sure that you didn’t develop cancer.” I have an IQ in the top one percentile.

Something in this story just didn’t make sense. That night my father told me that he was proud that I didn’t cry when my mother told me the lie. He was proud; I was numb.

A few weeks later my mother took me to a reproductive endocrinologist. He wrote a prescription for Premarin, told me I would have to take it for the rest of my life, that I would never have babies and never have a menstrual cycle. From that day forward, no one in my family has ever again spoken to me about my medical condition. Not my parents and not my elder brothers, one of whom is a medical doctor and one of whom is a clinical psychologist.

At age 20, I was in my first year of law school and in the habit of studying in the medical school library. I visited the library late at night to avoid being seen poking around the stacks. In those days before computerized medical databases, I worked with the huge Index Medicus, beginning with the extensive entries for “oophorectomy.” After several weeks of poring over medical texts and comparing the appearance of my body with the clinical photographs, I reached a firm diagnosis: testicular feminization. Not an oophorectomy, as my parents had told me. The doctors
had removed my—testes.

Alone and frightened, in the deserted stacks of the medical library in the wee hours of the morning, I learned that I was a “male pseudo-hermaphrodite.” This discovery didn’t really change my course of treatment. At age 17, I had decided to stop taking Premarin and stop going to doctors. I stopped taking the hormone because no one had ever given any reason why I needed it other than the absence of ovaries. If I needed a pill to make me “female,” then I preferred to allow myself to be whatever I would be.

Quite honestly, there was no perceptible change after I stopped the prescription. My decision to drop all medical care was the direct result of the humiliation and obfuscation I had been subjected to over the prior seven years. Interns were paraded past my vagina at age 14 or 15. I was never told about my prospects for sexual intercourse. Not once was I asked how I felt about any of what had transpired. I was a patient with a terrible secret that even the doctors and my own mother couldn’t or wouldn’t discuss.

Last year I resumed medical care, because I decided that I needed to start dealing with all of this. I learned that years of hormone depletion had caused my bones to lose mass. My bone density is now so low that I am at immediate risk of spontaneous spine and hip fractures. I had been completely unaware of the connection between estrogen and osteoporosis.

I also learned that I needed to use a series of increasingly large lucite “tampons” to dilate my vagina, if I wanted to be able to have vaginal intercourse. I would have liked to believe hat the medical community is now more in touch than it was when I last saw a doctor 18 years ago. It isn’t. The first three times I visited my new endocrinologist, the intake nurse asked when my last menstrual cycle was. When I answered that I thought the doctor wouldn’t need to know that, she told me, “Oh yes, Dr. — specifically asked me to inquire.” When I told her I didn’t have menstrual cycles, she said, “Oh, hysterectomy, huh?”

To those who have experienced menarche, this might not seem like much of an issue. Some might think it a relief not to have periods. But imagine everyone from gym teachers to best friends asking about your nonexistent periods. I simply do not know how to answer such questions.

Since resuming medical treatment I have repeatedly and persistently asked to be put in contact with other AIS patients. The answer I always got was “why would anyone want to talk about it?” I was regarded with suspicion for even asking. For the past twenty five years I believed I would live my life never being able to share my secret with anyone. I had never discussed this syndrome with any person other than doctors until last year. I had hit a wall and felt that my life wasn’t work-ing and I didn’t see much point in continuing. I sought professional counseling, taking care to avoid psychiatrists, who are medical doctors. The social worker I turned to has been quite helpful in allowing me to express the thoughts that have been bottled up within my mind for most of my life. But still I was unable to locate another soul who knew what it feels like to inhabit my body. Then, on December 26, 1994, something
called me to return to the medical library.

I discovered in the British Medical Journal three articles describing, not case studies, but real human beings with AIS. One included the phone number of a new support group in England. For two days, I rehearsed what I would say to the contact at the support group, how I would maintain my composure; talking about this condition inevitably reduced me to tears. Somehow I got the words out in between sobs. I was amazed to learn that most people who contact the group are in a near hysterical state because of the complete lack of emotional support they have received.

In March the inaugural issue of their newsletter, ALIAS, announced that their first meeting would be held on March 15. Within the hour I was booked on American Airlines flight #105 to London. Next week, for the first time in my life, I will meet other people with AIS. I will meet others who understand the fear, humiliation, shame and secrecy which surround my status. I have been locked in a closet for 36 years. But from this moment I am committed to dedicating all my resources, emotional and financial, to ensuring that no one suffers a lifetime of emotional neglect because of a ridiculous social taboo. I welcome the friendship of all ISNA members as I undertake this journey.