Being Transgender and Intersex — Ending the Stigma, Starting the Conversation.

When I first realized I was trans, by reading someone else’s narrative and learning about gender dysphoria, I was beyond devastated. It was not so much that I ‘wanted’ to be female, as much as I wanted to be okay with who I was, and I had to admit that I never truly knew who I was as a person.

The vast majority of trans narratives start with ‘I wish I had been born a girl/boy’ or ‘I was supposed to have been born a girl/boy’ or ‘I’ve always wanted to be seen as a boy/girl.’ These narratives are valid, and there is overwhelming evidence for a transsexual brain (https://www.newscientist.com/article/dn20032-transsexual-differences-caught-on-brain-scan/).

However, my story is different.

I was born with both male and female genitals. The only thing missing was a vaginal opening. Even my biological sex (chromosomes) was smack dab in the middle. I have Klienfelter’s Syndrome, where my chromosomes are XXY. This is why I have kidney disease, heart issues (I had catheters put in as a kid), why I needed physical therapy, occupational therapy, speech therapy, why I am deaf, and why I have coordination issues. While this may or may not have impacted my cognitive function, I am thankful daily to God the gifts he has given me of a hunger for learning, and a desire to live life to the fullest. For more on Klinefelter’s, see here: http://www.uhhospitals.org/health-and-wellness/health-library/i-p/klinefelter-syndrome

However, in my case, I have a high level of androgen insensitivity, to the point where it was becoming increasingly obvious as I got older. A full androgen insensitivity would have caused me to develop female genitals only, so I have partial androgen insensitivity. Some of my friends will remember that I was very skinny, almost feminine-like as a child, and I even had girl’s hips. As I got older, I maintained my youthful appearance, and even now at 38, I look very young. While many might view this as a good thing, there has been severe consequences for this. See, androgen insensitivity syndrome means that my cells don’t absorb testosterone. So, where does all that testosterone go that isn’t absorbed? Through my kidneys, which causes further damage.

For information on androgen insensitivity, see here: (http://www.isna.org/faq/conditions/pais).

For a long time, I was told that my diet was contributing to my kidney disease. However, looking at the evidence provided to me from my doctor, and examining my ultrasound and X-ray pictures, that isn’t clear. Renal function has remained stable (+50%) since starting hormone replacement therapy, where it had dropped to 48% just before starting. For more information on kidney disease and testosterone, see here: (http://www.sciencedirect.com/science/article/pii/S2468024916300432).

For a male, my testosterone levels were lower than average. One treatment that was suggested was testosterone supplementation, however, this would have aggravated my gender identity disorder (gender dysphoria), and there is a clear link between testosterone supplements in someone with low testosterone (or testosterone being used in someone with androgen insensitivity) and mortality. For more on that, see here: (http://www.renalandurologynews.com/chronic-kidney-disease-ckd/diagnosing-and-managing-low-testosterone-in-ckd/article/403482/).

Starting hormones was indeed a matter of life or death: the average life expectancy of someone with Klinefelter’s used to be 5–10 years less than someone without it, but when you add up all the other health issues that I have, particularly my kidney disease, you can clearly see that the future looked very grim, indeed. For more on Klinefelter’s and mortality, see here: (https://www.ncbi.nlm.nih.gov/pubmed/21414026)

To add to the fun, I have a very unique situation called mosaicism. This means that if you were to take a DNA swab from somewhere, say, my mouth, you would get a reading of 47, XXY (Klinefelter’s), rather than what would be normally found on a biological male, which is 46, XY. However, if you were to take DNA from somewhere else, like my kidneys or my lungs, you would find a completely different DNA markup. Instead of 46, XY, which is biologically male, I am 46, XX. The presence of a single Y chromosome in my genetic makeup was enough to create male genitals, but this is what is known as a ‘false positive.’ I am not biologically male, nor was I ever. For more on mosaicism, see here: (https://oup.silverchair-cdn.com/oup/backfile/Content_public/Journal/humrep/26/12/10.1093_humrep_der351/2/der351.pdf?Expires=1499984445&Signature=WSO2pwhsMP9SkSKkYjNq5RbfobPp9hAMu6kw2-ab5xw0V4B0xC2DLaPjk0XB4UM-4~RDH~xCVghXelDFqHDCAvSPkw~xEvXxbCERU6B4hkMCzPE2qhBh5WGFForgY7r2LCk0X4Pptbjjl6UJ-hnjGycfTtCfJki23oODD3oToUmLGkOexd0Y7XlL9jNosuc0RF-7K2hO59eBP21G4eBpmUuzVLX8-dTHIaDzQNlf5vvjE33GMUzYJ~xpPMTQ0EfsSySzFwJC64XcBVEN5jSkj2XIGtql031p82QE7qkNHK65JZN9moSvtl92Q5uxYeMV2uKWOaFVE2awuaVvf5sCJA__&Key-Pair-Id=APKAIUCZBIA4LVPAVW3Q)

For more on 47 XXY, 46 XX, see here: (http://www.urologyannals.com/article.asp?issn=0974-7796;year=2015;volume=7;issue=4;spage=520;epage=523;aulast=Talreja)

It has taken me several months to put together a detailed history of who I am and where I came from. What happened to the girl parts that were inside me? Why wasn’t I told about this? Why did my doctors cover this up? They did cover this up, but you cannot hide scar tissue. When I was seven years old, the doctors told my parents that I needed to be hospitalized for ‘bladder issues.’ I remember this surgery well because I woke up halfway through it, unable to move. The doctors noted that I was awake and put me back under. Later, I confronted my mother about the surgery, and she was very confused. She didn’t ask me any more about this surgery, but later on, when I was about ten, she told me that ‘some boys are born with girl parts, and some girls are born with boy parts and they are perfectly normal.’ To see a story from someone like me, see here: (http://www.teenvogue.com/story/intersex-video-periods-genital-mutilation-surgery-identity)

Puberty was a huge issue for me; it felt wrong, but I didn’t know how to express that. Mentally, a sensation of fuzziness overshadowed everything, like my brain wasn’t running right. It got worse and worse, but I didn’t think anything would help me. For many years I honestly thought I was retarded or suffering from diminished cognitive function. It was only when I read the narrative of a trans person that I began to ask questions and began my journey to finding relief from my mental symptoms. After I started hormones, the relief mentally I found overshadowed everything else. It is very likely that I do not have a transsexual brain, but a female brain.

It was criminal what happened to me. It really was. No one should ever have to experience the pain and suffering of being forced to live out a role they were never designed to fit into. More importantly, now more than ever people need to share their stories. I understand the stigma is still there about people who were born intersex, and I understand that there are an overwhelming number of people who desire to transition and go stealth — without everyone knowing. However, trans and intersex erasure is real, and there are those out there who believe that trans people do not really exist, and that those who are intersex should be shamed back into the closet because their stories do not fit the binary system that God created (no offense to those who do not believe in God).

It is my sincere hope that those of you out there who have always questioned who you are will start first not with hormones, but a magnifying glass. The deception that doctors have shown toward intersex patients is real. For more on that, check here: (http://www.isna.org/faq/concealment)

I am not someone who wants to start a movement, or be what is referred to as a ‘transtrender.’ I wonder how many people who outwardly profess they are transgender are ‘loud and proud’ about being trans but inwardly embarrassed about their intersex condition.

- Sedgy