It is only recently that I have discovered the term “Intersex” and how it relates to my body. I like this term because I prefer more choices than male or female, I think there’s a continuum of Male———-to———–Female just like shades of grey from black to white. It wasn’t until I was twenty-nine years old that a label was placed on my physical differences, differences I never quite understood. I had large nipples on smallish breasts, peanut sized testicles and cellulite type hairless fatty tissue over most of my body. I was told at a fertility clinic that I had an extra X chromosome and a Karyotype of 47XXY. 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 begin testosterone replacement therapy. I was told my libido 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 referred to my “condition” as Feminised Male and to me explained why I had always felt between the sexes without understanding why.
My differences were not evident at my birth in 1947, but when puberty came along, I knew I was different to other boys and was often teased for having small testicles and gynecomastia (male breast tissue).
It was an awkward time, as I was very tall measuring six feet nine inches at fifteen years of age. I have since learned testosterone is needed to stop growth of the long bones in the arms and legs. I was a self-conscious, sensitive and emotional kid. My mother was concerned about my 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 knowledge about my situation, at the advice of the doctor at the fertility clinic, I faithfully got my 300mg injections of Enanthate Testosterone every two weeks. I soon found myself going through puberty all over again but this time round I was in my early thirties. I was a first Tenor turning into a Baritone, I began shaving and eventually grew a beard, the hair extended itself to everywhere on my once smooth body. These were phenomenal changes for me both physically and psychologically with the greatest impact being dramatically increased sexual energy, so much so that I finally began to appreciate what the word “horny” meant.
During this period (1976 – 1981) I did not receive any counselling for emotional issues, instead 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 administering Testosterone was like reverse menopause combined with the feeling my female persona was dying it was an overwhelming time of confusion, yet the confusion was mixed with discovery
I didn’t understand why I had been chosen to have this experience in my life and wondered if I should 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 having made 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 intramuscular into my buttocks. Over the next ten years I became quite strong and trim I exchanged sedentary employment for more challenging and physical 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 head was beginning to bald, I failed to realise these were side effects of testosterone replacement therapy. Now my body appeared very masculine and I was told 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 and I feared that my testosterone replacement therapy had failed
I started to think of testosterone as a poison in my system and began to get back in touch with my female side realising 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 made in 1976 to find out what being male was like. My sexual orientation had not changed, I was still attracted to men
I considered lowering my testosterone dosage, but doctors advised against it, telling me there would be serious side effects. But I wondered if the side effects could be any more painful than the fear of prostate, breast or testicular cancer if I were to continue the injections. Why wasn’t I told any of this when I started hormone therapy? Have I become a “virilised female” ? I likened my experience to that of a female to male transsexual with a penis and I felt caught between once more.
For two or three years my doctor raised my testosterone level to 350 to 400mg every two weeks to see if that would improve my sex drive. My sex drive remained unchanged, but I started having more prostate and urinary problems. I was placed on another drug to try and compensate for the side effects of testosterone.
In October 1995 I attended the first National Conference of Klinefelter’s Syndrome & Associates (KS&A) in Washington DC. The conference was a disappointment for me. In that Intersex and Gender issues were never discussed. I assumed this was probably due to what I perceived as Homophobia on the part of the group’s founders (who were parents of children with Klinefelter’s Syndrome) and of the supporting staff of Johns Hopkins Hospital. There was a small group panel that was supposed to discuss Gender but, instead they discussed Sexual Orientation. The panel immediately became polarised and did not move forward. There was about eighty people with Klinefelter’s attending including quite a few children. Some twenty of us adults spotted each other as Queer and spontaneously got together to discuss our sexuality and our disappointment over the lack of support by KS&A for gender issues.
At that conference I learned that The US Food & Drug Administration had just approved the Androderm Patch which was a method of delivering testosterone without the need for injection. I was unable to wear this patch because my scrotum was so small that it does not provide enough area for the patch to work. In December 1995 I decided to stop my injections as they had become painful and I need to rest after nineteen relentless years, at the time I stopped my dosage was 350mg fortnightly. Side effects began within five weeks, things like Fatigue, Mood Swings, Depression, Difficulty Urinating. I had my testosterone level checked; it was a 12 (normal male levels are anything between 400 – 1100)
I realised I could not return to where I was in 1976 before the testosterone injections and I decided it was best to stay on the journey I had begun. Somehow, I would cope. I knew that being “caught between” would be my life challenge and that would be okay especially given how I felt whole with all of my unique parts. I needed to treasure my ‘X’ception
And so it was that in January of 1996 I returned to testosterone therapy with one Androderm patch per day, my energy improved but flattened out within two weeks. Three weeks later I began wearing the recommended two patches to see if my moods and depression would improve. I endured these Androderm patches for five months it felt strange having to adjust to wearing them, they had to be changed every day and could not be worn on the same site again for seven days. I had to rotate the site with preferred areas being Upper Arms, Back Thigh and Abdomen. They are about three inches in diameter and have white rings around the circumference of the adhering portion. Wearing them I felt I felt conscious at the Gym and in the Shower, where the last thing I sought was to draw more attention to myself.
Because of the patches I had constant skin rashes and itchiness that required hydrocortisone cream to heal. The adhesive from the patch was so sticky that only a pumice stone would remove it. I was reminded daily that I was different, and I had to adjust to that experience. At times I had several splotches of red circles on my skin, over time applying the patches to my preferred areas resulted in my skin becoming very sensitive and resulted in having to find alternative areas (front thighs) where it meant having to shave that area of hair so that the patch would stick to my skin. After four months of wearing two patches every 24 hours I had my testosterone level checked and it was only 345mg, I had expected a higher level but was not motivated to use a third patch.
The main side effects from the androderm patch was the development of two large fat deposits, one on the back of my neck “a Buffalo Hump” (my adrenal and thyroid gland tests were normal) and the other in the form of a spare tyre was located under my navel. I’m sure this due to my ingestion of hormones and changes to my overall hormone ratio. My moods were somewhat altered, and I felt more depressed during that five-month period. Painful injections started looking good again, at least I only had to deal with them every two weeks and they were virtually garbage free. Yet again I felt “caught between” . I decided this rollercoaster had to end that I needed more control over my destiny. My sex drive was still absent even with the patch and so I wondered how unfortunate all this hormone therapy had been since my lack of sex drive was the main reason I originally started on the hormones.
On Father’s Day I decided I had enough of the patches, I decided to return to the injections and wait and see if the medical community would ever come up with an acceptable alternative.
I injected 200mg of testosterone enanthate into my glutes, it felt good, I’ve had two shots since then both at 250mg and I suspect I will stay at this level indefinitely. My energy levels have returned along with my sex drive and I generally feel very good. I do not miss the hassle of patches at all
Having gone through the writing of this I realise this is an important educational opportunity, there are many courageous Intersex people on our planet and not just male and females. Our Sex Hormones define us or set us free from uncertainty, when others look at me they probably see a big hairy bearded man but, only I know the truth and I will strive to continue to redefine myself.
My body feels more androgynous and I am adjusting to my reality of my fat deposits, I guess we are all a combination of male and female, muscle and fat. I’m allowing my emotions to flow again and adjusting to another stage of my Intersex self, I no longer feel caught between, instead I have realised I am a unique blend of my female and male essences and I expect to continue evolving on that level.
This 1999 account of David’s journey toward self-discovery was originally published in a book by Alice Dreger titled Intersex in the Age of Ethics and marked the first time an entire volume had been dedicated to exploring the ethics of those subjected to Intersex interventions. Much of David’s long career in activism including that of being the first volunteer member of The Intersex Society of North America, serving on its board from 2002 – 2005 is housed in digitised format at the San Francisco Public Library and is available offline and/or by request for research purposes. To that end David has kindly given us permission to publish “Caught Between” and hopes by doing so, it will make the journey that little bit easier for those who follow on behind.
These days David is making the most of their retirement and is firmly focused on looking after their health, realising their limitations and doing what they can to support Intersex youth. They have recently acquired a Canadian birth certificate with an X and have legally changed their gender to Non-Binary. In a recent conversation David shared they had been a long time member of the Radical Faeries and has played an active role in the community, their Faerie name is Bearded Iris. We mention this because the further The XXY Project reaches out and connects within an XXY space, the more we uncover a heightened interest in the Faeries and to our mind it should serve to indicate how our lives are not as hetero-normative as parents and doctors so readily make them out to be
Your world is looking up David and the XXY community is looking toward you in awe of your achievements, wishing you all the best in your retirement and thanking you from the bottom of our hearts for being there and being who you are.