The Curious Case of the Hormonal Enigma.
An "intersex person's" gender-affirming memo to parents with transgender youth.
In the extraordinary lottery of life, I found myself a rare specimen, afflicted by Congenital hypogonadotropic hypogonadism (CHH), a condition impacting a mere 1-10 individuals per 100,000 births, hindering the production of sex hormones. It was in the turbulent landscape of adolescence that my diagnosis emerged, leading me to embark on a journey of medically necessary “gender-affirming care”, inclusive of hormone replacement therapy (HRT), rescuing me from an eternal pre-pubescent limbo. My peculiar predicament bears semblance to Kallmann syndrome, albeit sans the olfactory impairment. Intriguingly, treatments such as Lupron, Supprelin, and Eligard, employed to obstruct puberty in children, mirror the hormone deficiencies wrought by my own condition, CHH.
In this piece, I shall endeavor to illuminate the experiences of receiving gender-affirming care and the ramifications of a pituitary system bereft of essential hormones, such as lifelong chronic illnesses, infertility, and neurodevelopmental disorders.
Growing up in the suburbs of the Bay Area, I was an only child, born to a retired kindergarten teacher and a professor. My mother, the embodiment of understanding and kindness, contrasted sharply with my father, who, vexed by my learning disability and burgeoning developmental issues, could not comprehend the challenges I faced. My mother's inability to confront the reality of my disabilities led to a romanticized vision of me as an idyllic son, misunderstood by others. My father, meanwhile, insisted on projecting the image of an ideal family, concealing my developmental problems behind a façade.
The world I inhabited in the 1980s pales in comparison to the present, where adolescents encounter a plethora of gender identities and variations. In my era, the confines of masculinity and femininity were rigid, and gender roles were narrowly defined. Androgynous figures such as David Bowie faced unwarranted scrutiny and moral policing. Transgender individuals were virtually non-existent, and the term itself was seldom uttered. Gender presentation deviations, such as cross-dressing, were signs of homosexuality.
During my school years, the internet remained the exclusive domain of the military, with local papers and daytime television as the only means to keep abreast of trends. My education began under the weight of a severe learning disability that impeded basic language skills acquisition. By the age of 10, these difficulties intensified, and I struggled to read, write, or spell. Eventually diagnosed with dysgraphia, dyslexia, coordination problems, and attention deficit hyperactivity disorder (ADHD), I was prescribed Ritalin and enrolled in special education.
In the end, despite the obstacles, I found that out of intense complexities, intense simplicities do indeed emerge, shaping the course of our lives in ways we could never have anticipated.
In the grip of an absent pituitary progression, I found myself physically and mentally arrested, as though an unseen hand had administered Lupron to thwart my pubertal development. At the tender age of 12, I first sensed the wrongness, the diagnosis later confirming my lack of development. A disquieting awareness of my difference gnawed at me as I observed my peers and pondered the nature of sexual attraction. Bereft of the internet and awash in a society fixated on sexual orientation, I wondered if I were some alien species, newly spawned on Earth. My genitals bore an infantile aspect; my testicles, resembling tiny hardened peas, remained stubbornly unresponsive to growth, and my penis felt like an inexplicable appendage.
My aberrant physicality reverberated throughout my psyche, profoundly shaping my emotional landscape as I approached my 13th year. Clinging to hope, I yearned for the transformative metamorphosis my peers underwent, only to find myself retreating further into isolation. Shame and fear haunted me, as I dreaded the prospect of being deemed homosexual and the attendant maltreatment. Desperate to remain inconspicuous, I concealed my inadequacies, even in the face of a swift kick to the groin that left me disoriented and my peers dumbfounded.
Ensnared in a childlike state, I grappled with my inability to connect with others and the societal pressures that governed my mental health. Bereft of internet, cell phones, or like-minded individuals, I found solace in television's masculine and feminine role models, devising my own coping mechanisms. My peers' fascination with sports, aggression, and girls mystified me, leaving me feeling awkward and out of place. Seeking refuge in a realm of fantasy, I played with dolls and sci-fi toys, avoiding the gaze of my peers by taking private showers and never undressing in their presence. Thus, I maintained my clandestine existence.
The concepts of masculinity and femininity, relegated to the abstract realm, were dictated by television and my social circle. Without a frame of reference for my own body, I languished as an outsider, gravitating toward younger individuals and those struggling with challenges like autism and behavioral issues. My underdeveloped state and perpetual dread of exposure plagued my youth, as any deviation from the norm, particularly in matters of sexuality or sexual characteristics, was linked to homosexuality. Though devoid of sexual attraction, I harbored innocent, fawn-like crushes on girls.
At 15, I immersed myself in the fantasy worlds of comic books and Dungeons & Dragons, engaging with neighbors playmates younger than myself. My emotional regulation remained precarious, as I continued to seek solace in the company of imaginary playmates. The school system's ignorance and misinformation regarding learning disabilities compounded my struggles, and my high school experience was marred by bureaucratic indifference and ill-equipped instructors. Teachers favored mature students who could keep pace with their instruction, leaving students like myself, burdened with learning disabilities, to flounder under the weight of personal responsibility. The tedious, repetitive drills only served to alienate me further from my peers, exacerbating my developmental issues as I entered my senior year of high school at 17, struggling to mask my growing challenges.
It was not until a doctor's perfunctory examination, during which an intern noted my peculiarly elongated limbs, that my aberrance came to light. The intern proceeded to conduct a genital examination, and his astonishment upon discovering my lack of pubertal progress remains etched in my memory. At the age of 17, such developmental stagnation was deeply troubling, prompting an urgent referral to the Stanford Pituitary Center.
The physicians at the center subjected me to a barrage of tests—blood work, genetic assessments for Klinefelter syndrome and other chromosomal anomalies, CAT scans, and MRIs—aimed at visualizing my pituitary gland. Dysfunction in this gland is often attributable to tumors or intersex conditions such as Klinefelter syndrome. However, the tests yielded no conclusive results, leaving me with a diagnosis of idiopathic hypogonadism. The term "idiopathic" denotes an unknown cause and, at the time, neither “intersex” nor DSD were applicable descriptors, being reserved for newborns with ambiguous genitalia. Bereft of support groups or others grappling with similar conditions, I was left to make sense of my medical predicament with only the expertise of physicians, who were trained in medicine, not psychology or sociology.
My treatment hinged on the severity of my idiopathic hypogonadism, which rendered me incapable of producing the gonadotropins necessary for androgen production. A solitary pubic hair testified to the presence of androgen in my system. Injections of gonadotropin were administered to ascertain whether my testes could produce androgens, and to diagnose the root of my hypogonadism—hypergonadotropic or hypogonadotropic. The latter was confirmed, implicating my pituitary gland in the dysfunction.
Though gonadotropin injections might have spared me infertility, they were deemed neither standard nor cost-effective. Instead, I was subjected to hormone replacement therapy (HRT), which involved regular testosterone injections and periodic "masculine checks" to ensure the development of my primary and secondary sex characteristics. These intrusive examinations encompassed measurements, assessments of hair and muscle mass, and blood tests to monitor estrogen and testosterone levels.
interview with gender non-conforming recount similar experience on Lupron)
As the HRT took effect, my predilection for toys and dolls waned, supplanted by age-appropriate interests. My newfound physical maturation engendered a sense of self-confidence and assurance, and I became acutely aware of the interdependence between bodily and cognitive development. Research has substantiated the critical role hormones play in the restructuring and maturation of the adolescent brain, particularly in relation to memory, muscular coordination, cognition, decision-making, and emotional development.
The onset of androgen-induced maturation propelled me from merely admiring women to pursuing relationships with them. However, my delayed development exacted a toll, as it was not until the age of 26 that I entered into my first full sexual relationship. The enduring shame and stigma of underdevelopment, coupled with my inconspicuous testicles, proved challenging to overcome. The endocrinologist's haste to complete my pubertal progression precluded the option of freezing any of my sexual characteristics. As such, the physicians remained vigilant in their masculine checks, evaluating muscle and fat distribution according to a predetermined checklist of masculine traits.
The physical transformation unfolded over the course of four years, but the mental and emotional aspects of my development were an ongoing process. The subtle social strategies and nuances of dating, lost to me in my formative years, demanded a steep learning curve as I navigated the complexities of adult relationships.
In the wake of an unusual journey through the obscure world of hypogonadotropic hypogonadism, I emerged from the chrysalis of my condition, forever transformed. Grappling with the complexities of a rare hormonal disorder, I've come to appreciate the delicate balance of the human body and the profound impact it can have on one's sense of self. With each step forward in my hormone replacement therapy, I've not only conquered the physical barriers but also learned to navigate the intricate tapestry of societal expectations and personal identity.
In the aftermath of my remarkable odyssey through the enigmatic realm of HH, I emerged from the cocoon of my affliction, irrevocably altered. Wrestling with the intricacies of a rare hormonal aberration, I have come to recognize the fragile equilibrium of the human body and the consequential bearing it holds on our very essence. As I advanced in my hormone replacement therapy, I transcended not merely the corporeal obstacles, but also learned to chart the labyrinthine interplay of societal norms and individual identity. This journey, replete with trials and revelations, has endowed me with an unparalleled vantage point on life and the diverse manners in which we carve out our place in the world. Regrettably, as you reach the end of this account, countless children continue to face dire developmental risks and chronic Illnesses, as meddling with their healthy bodies with Puberty Blockers ironically exacerbates the very issue they seek to rectify.
To write this article, I hired a development editor who specializes in fertility and a professional medical document editor. This was a labor of love for me, and I put my own money into it. If you would like to contribute to help defer the cost.
PayPal https://paypal.me/jwlinehan?locale.x=en_US
Bitcoin Address bc1qcsq4e9k5v3e4n0vsk7u7vq8ws2wsvuua3atgp4
Ethereum Address 0x9F0672d838588f0f869764BFF135dB032B4B1402
My next article “Puberty Blockers Psychosocial Effects on Adolescents Exhibiting Gender Dysphoria” is still in the works and I hope to complete it if I can defer the cost.
Incredible account James, thank you. I had no idea of the complexities. Obviously it wasn’t the main focus but I didn’t understand how your cognitive and intellectual capacity ‘caught up’. All best wishes to you.