If you are XXY, it’s essential to realise your uniqueness and know what works for others may not work for you. To that end, if you are seeking the intervention of testosterone, it’s important you realise the most significant impact it will have is that it will cause your body to virilise, which may or may not be in your best interest. For this reason, we suggest working through any concerning issues you may have with a Psychologist who will assist in making a decision that’s right for you.
For those who have affirmed their gender identity and received the green light to proceed with treatment, it’s vital to undertake pre-treatment blood tests that will serve as a baseline for all future tests. Significant tests are estradiol, testosterone, luteinising hormone, and follicle-stimulating hormone. One would expect the treating doctor to understand XXY and realise there is no gold standard approach, that we are all different, and when compared to XY males, we have our own natural (endogenous) supply of testosterone which can be high or low. Knowing your baseline is important because too much testosterone may cause physical and psychological side effects, whereas too little will not achieve the desired effect.
The trouble with most forms of exogenous testosterone is they are not Bio-Identical (do not match what the body naturally produces). For this reason, annual physicals are essential, allowing your doctor to monitor your health closely. Too much testosterone can thicken your blood and increase haematocrit levels (red blood cells). In extreme cases, this is called Polycythemia. For older XXYs, too much testosterone can enlarge the prostate (BPH – benign prostate hyperplasia). Annual prostate digital exams are essential from forty-five years of age onwards.
XXY’s who are raised male and identify their gender as something else often seek alternative sex hormones but find conventional medical practices reluctant to prescribe them. This is a clear sign that doctors are treating a disease of the testes, not the overall individual. These people do not view their differences as a disease but rather a celebrated part of their individuality.
All too often, their care falls upon Gender Clinics who are willing to help but seldom understand our issues which are atypical when compared to Transgendered. The vast majority are not seeking gender affirmation surgeries, only access to appropriate pharmacological care that would allow them to be themselves. Unlike XY Males who also avail of such clinics, it’s highly unlikely XXYs will require a testosterone inhibitor unless the individual was mosaic and their natural testosterone was high from the outset. The plight of these people is exacerbated further by XXY/Klinefelter Support Organisations, who see them as a threat to the status quo, and inform their members that people who come to reject exogenous testosterone and masculinity are atypical of an XXY experience. For this reason, those who come to reject the gold standard masculinity approach are never included in research, which invariably leads to biased outcomes.
Please remember I am not you. Allow me to make my own choices and explore my being. Don’t ask me if I feel like a boy or a girl. Chances are I cannot explain my feelings to you in a way you can understand. I need you to make decisions on my health care when I am too young to make them, to base them on good information and not out of a desire to shield me from something you may perceive uncomfortable.
I need you to be honest with me about my health. Allow me to see my doctors on my own. When I am young, please keep my health and school records organised. When I get older, teach me how to do this myself. Always be my number one advocate and speak for me when I cannot communicate my needs and wishes. As I grow, teach me to advocate for myself. Regardless of my age, always respect my privacy. Please don’t use me as a poster child for XXY to your friends or the XXY community. These are sensitive issues, and my health and welfare are confidential information. One day I will become an adult, and it will be my decision about how much of my privacy I am willing to surrender. When you talk about me on support forums, remember nothing on the internet ever truly goes away.
I need you to love and accept me unconditionally for who I am. Take the time to listen to me and get to know me. I am the one to speak to about my private information. Doing so lets me know there is no shame in being me. Let me explore my artistic and creative self through art, dance, language, music, and skills.
If you are a doctor and consider yourself an expert in all things XXY, then it’s best to leave now because you will never learn anything about us. Adult XXY’s often have adversarial relationships with physicians. If you have a patient like that, don’t take it personally, it’s usually because the medical community has mistreated us for several decades. We might be wary when we meet a doctor for the first time. We assess you as a potential doctor as you consider us a likely patient.
Please don’t assume that you are more knowledgeable by going to Medical School than those of us who live it. When you went to medical school, research done and given to you about XXY was smaller than a paragraph, and most of it was negative.
I need my doctor to keep an open mind. Their primary oath is not to harm. I expect them to be interested in new studies and educate themselves about the latest research in complex data and testimonials of XXY people. If I say testosterone is making me ill or if I ask for a trial of estrogen, please explain the outcome without judgment and based on my medical tests. Please respect that I know my body and am in sync with how I feel.
Remember, I am a human being first, not a condition, disease, anomaly, or freak of nature. I am so much more than my chromosomes and my physical body parts. Care for my body to keep it healthy but don’t try to manipulate or change it with hormones or surgery to how you think it should be without asking me first.
Avoid assumptions. Just because I also have a phallus, don’t assume that the best solution is to cut off my breasts. Maybe my breasts are an intricate part of maintaining my inner sense of well-being. I need my doctor to show me how to give a self-breast exam for breast cancer and teach me how often I should do this.
Take the time to explain the virilising effects testosterone will have on my body and allow me to decide if I want to incorporate body and facial hair, male pattern baldness, and hyper sex drive into my being. When you consider any treatment or procedure, be sure also to tell me what will happen if I choose to do nothing.
Just because I choose to identify my gender as male and take testosterone does not cancel out any in-betweenness I might display. Testosterone does not change my genetics. Let me talk about how I experience the Intersex quality of my being in an open, non-judgmental place of safety. The most important aspect of life for all XXYs is appropriate medical care. Forcing them to limit their gender expression to male-only can harm their well-being.
Talk to me, not at me and not just about me with my parents. I can understand things if explained to me, and I can make decisions about my own body. Be honest with me. Ask permission to examine me so I know that you recognise my body and choice. Don’t speak in absolutes or tell me how I will turn out. Always remember that my needs come before the needs of my parents, my doctors and society. If you are unsure about my needs, please proceed cautiously, especially in areas that cannot be undone, such as mastectomy.
Ask to see me without my parents always being in the room. Allow me or my family to disagree about a particular treatment you wish to try. Be willing to be a part of a respectful negotiation process about any disagreements regarding treatment. Celebrate my successes with me. Ask me about my hopes, dreams, and plans. Don’t fix my gender without helping me to understand who I am. Don’t try to fix me with hormones or surgical intervention before I am old enough to understand.
Qualities We Look For In a Doctor
- An ability to actively listen.
- Someone who provides cooperative healthcare as in co-relationship, not a doctor “doing” something to me, but a doctor working with me to help me achieve my optimal health.