Caught Between: An Essay on Intersexuality

D. Cameron

It is only recently that I have discovered the term “intersexed” and how it relates to my body. I like the term because I prefer more choices than male or female. I think there is a continuum of Male to Female; like shades of gray from black to white. It wasn’t until I was twenty-nine years old that a label was put on my physical differences, differences that I never quite understood. I had large nipples on smallish breasts, peanut-size testicles and cellulite-type hairless fatty tissue over most of my body. I was told at an infertility clinic that I had an extra “X” chromosome and a karyotype of XXY-47. This is commonly known as Klinefelter’s syndrome. I was informed that I was genetically sterile and that my “sex glands” produced only 10% of what was considered normal testosterone levels for a male. I was advised to immediately start testosterone replacement therapy. I was told that my “sex drive would increase,” I would “gain weight and my shoulders would broaden,” and that I would have to do this every two weeks for the rest of my life. The medical journals called my condition “feminized male.” I had always felt caught between the sexes without knowing why.

This reality was not evident at my birth in 1947. When puberty came, I knew I was different from other boys. I was often teased for having small testicles, and I had gynecomastia (breast growth in a male). It was an awkward time for me, as I was very tall (6’ 9” at 15 years old). As I now have learned, testosterone is needed to stop the growth of the long bones, in arms and legs. I was a self-conscious, sensitive and emotional kid. My mother was concerned about the lack of development and after several visits the doctor—incorrectly—assured her that I would grow up “normal” and that I could produce children.

Not having any other information or knowledge about my situation, I faithfully got my 300 mg injections of testosterone every two weeks. I soon found myself going through puberty all over again—in my early 30s. I was a first tenor turning into a baritone. I began shaving, and eventually grew a beard. Hair sprouted everywhere on my once smooth body. There were phenomenal changes for me both physically and psychologically. The greatest change was having so much sexual energy. For the first time I appreciated what the word “horny” meant.

During this period (1976-1981), I did not have any counseling for emotional issues. My main support came from my life-partner, Peter, whom I met in 1978. I dealt with most of my “transformation” alone.

The first few years of testosterone replacement therapy, I had the sensation of “reverse menopause” combined with the feeling that my female persona was dying. It was an overwhelming time of confusion, yet mixed with discovery. I didn’t understand why I had been chosen to have this experience in my life, and wondered whether I should instead have stayed who I was. In the end, because I was so tall, I decided to proceed, in order to find out what being “male” was like. I often regret that decision. When I first moved to San Francisco in 1979, I got my injections at Kaiser Hospital, but by 1983 I had learned how to inject myself. I would have to get into a semi-yoga position to push the large needle intra-muscularly into my buttocks.

For the next ten years I became quite strong and trim. I exchanged sedentary employment for more physically challenging work, and started my own home and garden renovation business. By now my once hairless body was covered—much to my dismay—with hair, and my hair was beginning to bald. I did not realize that these were side-effects of testosterone replacement therapy. Now my body appeared very masculine and I was told that, to further “improve the effect,” I could have testicular implants and have my breast tissue removed. I chose not to have surgery.

In 1991, my sex drive began to diminish significantly. I feared that my testosterone replacement therapy had failed. I started to think of the testosterone as a poison in my system. I started to get back in touch with my female side—and realized that I had never completely lost her.

Emotionally and spiritually, I have always felt more feminine, and I began to doubt the correctness of the decision I had taken, in 1976, to find out what being male was like. My sexual orientation had not changed — I was attracted to men. I considered lowering my hormone dosage, but doctors advised against it. There would be serious sideeffects, they told me. But could the sideeffects be any more painful than the fear of prostate, breast or testicular cancer by continuing the injections, I wondered? Why wasn’t I told any of this when I started hormone therapy? Have I become a “virilized female?” (Not unlike a female-to-male transsexual with a penis?) I felt caught between again.

For two or three years, my doctor raised my testosterone dosage to 350 - 400 mg every two weeks to see if that would improve my sex drive. My sex drive was unchanged, but I started having more prostate and urinary problems. I was put on another drug to try to compensate for the side-effects of the first drug.

In October 1995, I attended the first national conference of K.S. & Associates (a Klinefelter’s Syndrome support group) in Washington DC. The Conference was a disappointment to me, in that intersex and gender issues were never discussed. I assumed this was probably due to homophobia on the part of the group’s founders (who are parents of children with Klinefelter’s Syndrome) and of the supporting staff of Johns Hopkins Hospital. There was a small group panel which was to discuss gender, but instead they discussed sexual orientation. The panel immediately became polarized and did not move forward. There were about eighty people with Klinefelter’s attending, including quite a few children. Some twenty of us adults spotted each other as queer, and got together spontaneously to discuss our sexuality and our disappointment over the lack of support by K.S. & Associates for gender issues.

At that conference, I learned the FDA had just approved the Androderm patch, a method of delivering testosterone without injection. I was unable to wear the Testoderm patch because my scrotum is so small that it does not provide enough area for the patch to work on. In December 1995, I decided to stop my injections as they had become painful and I needed a rest after nineteen years. Some side-effects occurred within five weeks: fatigue, mood swings, depression, more difficulty urinating. I had my testosterone level checked. It was 12 (normal male levels are 400 to 1100). I realized that I could not return to where I was in 1976, before the testosterone injections, and decided that it was best to stay on the journey I had started. Somehow I would cope. I knew that being “caught between” would be my life challenge and that would be OK since I felt whole with all my unique parts. I needed to treasure my “X”ception.

In January I returned to testosterone therapy, with one Androderm patch a day. My energy improved, but flattened out in two weeks. Three weeks later I began wearing the recommended two patches to see if my moods and depression would improve. They have. My sex drive, however, is still nonexistent, and I’m not sure why. It has been strange adjusting to wearing patches. They must be changed once a day and cannot be worn on the same site again for seven days. You rotate the placement, with preferred sites being upper arm, back, thigh or abdomen. They are about three inches in diameter and have white rings around the circumference of the adhering portion. I feel self-conscious at the gym and in the shower. The last thing I wanted to do was draw more attention to myself.

Having done this, I realize that this is an important educational opportunity. There are many courageous intersexed people on our planet, not just males and females. Our sex hormones define us or set us free from categories. When others look at me they probably see a big hairy bearded man. But I know the truth. I will strive to continue to redefine myself.