Guest Post: “My Body Is a Puberty Blocker”

A warning about disease-causing drugs

James contacted me when I put a call out for people to talk for the book I’m working on, about the youth gender culture war. He spoke with so much knowledge and compassion and concern, and I wanted to share his story with all of you.

-LD

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Photo by Roberto Sorin on Unsplash

I was thirteen years old when I realized I wasn't growing. Around me, the boys stretched out, taller and stronger, and I stayed the same: smaller, weaker, than those around me, my muscles less taut. The boys spoke about girls with a desire I couldn’t understand. I felt nothing. The concept of sexual orientation confounded me; I didn't have any sexual attraction, only naïve child crushes on other girls. Everybody could beat me up, including those girls.

One day, a boy kicked me in the groin. It felt simply like a punch to my arm, and the boys were stunned, expecting me to collapse in pain. My testicles had never descended and didn't grow; they were basically the size of little hard peas. Eventually, around age six, I required surgery. I recall lying on cold, hard steel as a group of men examined me to see what the best procedure would be.

My problems extended beyond my body, and they’d started long before junior high. By fifth grade, I still couldn't read, write, or spell. Because teachers were not well-trained to deal with students with learning challenges, many students in my class, including myself, were held personally responsible for learning problems. They irritably gave us drills and mindless exercises that were tedious and repetitive.

After years of agony, a teacher noticed that I could have a learning problem. I was referred to a diagnostic facility, where I was diagnosed with dysgraphia, dyslexia, coordination issues, and attention deficit hyperactivity disorder (ADHD). I was prescribed Ritalin because I couldn't calm down and had extreme difficulty controlling my emotions. I was sent to a special school and placed in a class with children who had autism, Down syndrome, and other developmental issues. I had a high IQ and could express myself verbally, but I struggled with reading, spelling, and grammatical nuances. I remained in special education throughout my whole public school career, from kindergarten through high school graduation. I was trapped in a child-like mindset and unable to communicate with those around me.

The only explanation that made sense to me was that I was some new species born on this planet. These learning and physical challenges also affected my psychological and emotional well-being, and I developed body dysmorphic disorder. As my body refused to progress, I found myself withdrawing into seclusion, hoping the other males wouldn't notice anything different about me, terrified that the other kids would discover that I wasn’t like them. I frequently went home for showers and never undressed in front of my classmates.

My mother, a former kindergarten teacher turned homemaker, was very patient and compassionate, but my father didn't understand any of my problems, including my learning difficulty. A manic depressive, he just became angrier when I began to have all of these developmental issues. He wanted to present an idyllic household to the world, and the reality of my body and mind interrupted his desires.

There were no Internet, cell phones, or peer groups of like-minded people. I had to devise my own coping techniques. I played with toys designed for children considerably younger than myself. With my dolls and sci-fi toys, I fled into a fantasy world of Dungeons & Dragons comic books, or played with imaginary playmates on a swing in my backyard.

No one realized how severely underdeveloped I was at a normal doctor's appointment, when an intern spotted some unusual growth patterns. My legs were extremely lengthy in comparison to my torso. He then did a genital exam on me. I still remember his surprised expression when he realized I hadn't gone through puberty. He was worried because I was already sixteen years old! He phoned my father right away and urged him to take me to the UCSF Pediatric Endocrinology Center.

A thorough blood workup (including genetic testing for Klinefelter syndrome (KS) and other genetic disorders), a CAT scan, and an MRI were performed by the experts at the UCSF Pediatric Endocrinology clinic. My pituitary gland was visualized via a CAT scan and an MRI. This is significant because when the pituitary gland ceases to function, it is usually because of a tumor or a DSD disorder such as KS. But they discovered nothing: no chromosomal changes, no malignancies.

Subsequently, I was diagnosed with 'idiopathic'  congenital hypogonadism. The term "idiopathic" refers to a condition whose cause is uncertain. I was unable to create gonadotropins (FSH and LH), the hormones secreted by the pituitary gland to stimulate the testicles to produce androgens. There’s only a limited time that you can go through puberty and all metabolic systems revolve on this critical part of development. Without it, they told me, I would lose—or never gain—all sexual function. My learning disabilities and neurological problems would increase. My bones would go into a state of osteoporosis and become weak and shatter. And the primary cause of my dysfunctional emotional regulation was that my body wasn't producing any of these hormones, and therefore I had no stabilization that hormones offer.

But the fix wasn’t easy. Their first intervention was an attempt to stimulate my pituitary gland. However, because my pituitary gland was not functioning properly, doctors had to start me on HRT medication—androgens like testosterone—which they informed me would be a lifelong agony of injections. They didn't want to make me a permanent medical patient, but my psychosocial and emotional growth would be halted without testosterone. My immune system wouldn’t develop if I didn’t go through puberty.

The doctors told me that they could take me through puberty and hit the main marks of masculinization, but the endocrinologist said that we couldn’t replicate Mother Nature's Symphony of Hormones. I might still be susceptible to other chronic illnesses. I got androgen injections every three weeks for three months, and then visited the doctor for "masculine checks." This was done to check that the medication was effective and that my primary and secondary sex traits were maturing. These were highly intrusive checks; the doctor had to examine every developing area to see if the androgen was having the desired effect. The inspections included measuring sticks, hair and muscle mass assessments, and blood tests to evaluate estrogen and testosterone levels.

The treatments yanked me out of an adolescent infantile state and placed me in an adult world, in which I had to accept the reality of being a lifelong medical patient. The doctors were blatantly honest with me about the limits of what they knew, what they could do for me, the side effects, the challenges. But they gave me good health care. I was able to be taken off Ritalin and I ceased any of my emotional irregularities and a lot of my body shame started to get better—though I still have a lot of that today. I went to community college for four years to make up for lost time, but my learning disabilities never got better because I missed critical part of my early education that cannot be retrieved.

That is, I have navigated a lifetime of physical, cognitive and psychological problems because my puberty was blocked—by my own body—until I was 16. Even once it was unblocked, the challenges remained.

Over the years, I’ve searched online for my condition to see if there’s any new information, and a few years ago, I saw it mentioned on a transgender website. Someone spoke about androgens as if they were like antihistamines, not serious medicines with serious side effects. Then I saw the video of WPATH president Marci Bowers saying that none of the males she’d operated on, whose puberty was blocked at Tanner stage 2, were able to have orgasms. I thought, well of course: that’s because they’ve never had androgens in their systems, to make not just their bodies but their brains properly grow.

They’ve taken puberty blockers like Lupron: a medication that interacts with the GnRH receptors in the pituitary gland and can induce a state in the body that closely resembles hypogonadotropic hypogonadism, the condition I was born with. Doctors have made those kids’ healthy bodies into my unhealthy body.

As I followed the increasingly contentious debate about child and adolescent sex trait modification—or gender-affirming care—I became more and more concerned that doctors were going to recreate my own experience in kids, just because those kids felt gender dysphoric or identified as transgender.

Though I’ve spent nearly twenty-five years in frequent contact with endocrinologists, I’ve never heard them talk the way they do about gender-affirming care. They dismiss the side effects of puberty blockers and cross-sex hormones, treating this over-the-rainbow idea of gender identity, not a concrete medical problem. It’s as if none of them has ever seen what happens when a child’s puberty is blocked, as if none of them can remember actual medical problems related to a nonfunctional pituitary gland. It’s as if they’ve forgotten that when you introduce puberty blockers, you’re basically retarding growth and causing a child to go into a pre-adolescent state, starving them of hormones that their body needs and causing all these other problems. It’s as if they forgot that the problems caused by hormone imbalances during puberty manifest later in life, and that side effects often happen downstream.

Despite how they’re talking and testifying, endocrinologists cannot create a natural puberty of the opposite sex, they can only mimic certain growth marks, like height. Endogenous puberty is a natural process that’s critical for development and good health; it’s not an aesthetic choice. Your hormones are always in flux, shifting based on whether you’re awake or asleep, sick or well—shifts your body learns during puberty. And blocking puberty can interfere with relationships, with fertility, with neural development, with emotional growth. Puberty blockers are disease-inducing drugs.

I've been on this therapy for 40 years. My life has been riddled with health challenges. Each year, my insurance company has to handle $33,000 in claims. Despite these challenges, I've been fortunate enough to receive outstanding care because of my pituitary gland condition. The thought of what lies ahead for adolescents taking Lupron and cross-sex hormones for the rest of their lives deeply saddens me, as I have a clear understanding of the potential serious health complications. If you give a child with gender dysphoria puberty blockers, that’s a whole other endocrine disease you just added to their list of problems.

We know very little about the long-term consequences of puberty blockers, especially as part of the gender-affirming protocol. But we can look to people with my condition—a kind of inborn puberty blocker—for clues. And those clues should make us cautious, and deeply concerned.