How Having a Hysterectomy at 17 Changed My Life

Julie Jacques underwent a hysterectomy when she was just 17—but later her chronic pelvic pain only got worse.

I have vivid memories of a significant moment before undergoing surgery when I reached out to my doctor, earnestly expressing, “I implore you to avoid removing my uterus unless it is absolutely necessary.” This marked the beginning of my journey towards a life-changing decision.

My journey to health took an unexpected turn when, at the age of 17, I underwent a hysterectomy. My surgeon skillfully extracted my uterus, while sparing my ovaries and a portion of my cervix. This pivotal moment followed years of enduring excruciating cramps that began plaguing me at the tender age of 13, even before my initial menstruation. By 14, I had already collapsed due to the sheer intensity of the pain. The medical community started hinting at the possibility of endometriosis, a condition characterized by the migration of endometrial tissue beyond the uterus, adhering to nearby organs.

Subsequent years were marked by relentless pain that frequently left me bedridden and incapable of participating in daily life. This agony often reached levels where it compromised my cognitive clarity. After enduring numerous laparoscopic procedures, my medical team ultimately proposed the surgical removal of my uterus.

The eve of the operation found me in a hotel room with my mother, grappling with an overwhelming mix of emotions. She was on the brink of flying me back home, understandably hesitant to witness her child undergoing such a weighty decision. Together, we meticulously outlined the pros and cons. Among the drawbacks loomed the inability to conceive. On the flip side, the allure of a pain-free existence and the opportunity to pursue education and personal growth beckoned. Ultimately, the positive aspects held greater sway, though the specter of infertility remained a formidable concern.

I distinctly recall the distressing thought that arose: “Who would choose me if I could not offer the prospect of a biological family?” While my perspective has since evolved, this was my initial reaction—a fear that I represented a genetic terminus. The conventional trajectory that society envisions seemed at risk. Admittedly, adoption and alternative paths crossed my mind, yet the melancholy of not providing grandchildren for my parents weighed heavily.

In Atlanta, where I was residing at the time, specialists suspected adenomyosis—an anomaly where endometrial tissue infiltrates the uterine wall rather than residing externally. Following my surgery, the diagnosis came full circle as they confirmed the presence of both adenomyosis and endometriosis within my excised uterus.

This journey, marked by pain, decisions, and resilience, encapsulates my transformation and the complexities of confronting medical challenges head-on.

Severe Pain Came Back After the Hysterectomy

In the subsequent months, though an improvement was noticeable, there persisted a lingering pain that cast a shadow on my emotional well-being. This period also brought about a touch of melancholy. Despite these hurdles, I managed to commence my college journey, a significant achievement. However, as my sophomore year unfolded, a disheartening recurrence of intense pain emerged, reminiscent of a sharp blade piercing my abdomen. The ordeal was a stark reminder of the sacrifices I had made and the challenges that still lay ahead.

Unveiling the root cause, I discovered that my endometriosis had not been completely eradicated through proper excision during the initial surgery. A portion of it had persisted and begun to grow once again. Throughout my college years, I underwent a series of surgeries performed by local specialists. These interventions demanded remarkable resilience as I would resume my studies less than a week post-operation, driven by my determination to persevere in my education. Despite this unwavering resolve, when I sought guidance from my Atlanta-based healthcare providers, their discouraging response planted seeds of doubt within me. Self-questioning ensued: Am I being overly sensitive? Is enduring this pain my only recourse?

A turning point arrived during the midst of my inaugural year of law school, as I grappled with what I refer to as the “pinnacle flare.” The gravity of the situation cannot be overstated; it was as if I were on the brink of my demise. This phase rendered basic functions a Herculean task—I could barely eat, and life’s vibrancy had dwindled. This episode was unprecedented in its severity, eclipsing all previous encounters with pain. It served as a resounding wake-up call that change was not only necessary but imperative.

Navigating my studies became an unconventional endeavor, with my bathtub transformed into a makeshift study space and lectures accompanied by the solace of a heating pad. The pursuit of relief led me to crank up the temperature to such extremes that my abdomen bore the scars of this ordeal. The toll on my body was evident, yet so was my unwavering determination to transcend these tribulations.

Connecting With an Endometriosis Specialist

After an arduous struggle spanning two years, my path fortuitously intersected with that of Dr. Tamer Seckin, a distinguished expert in the realm of endometriosis and notable for his association with Lena Dunham. In March 2015, Dr. Seckin, graciously offering his expertise on a pro-bono basis, orchestrated a transformative excision procedure that marked a pivotal turning point in my life. His analogy likening my endometriosis to a tightly crumpled bundle of newspaper poignantly captured the severity of my condition. Expressing sincere remorse for the extent of the ailment, he elucidated how the residual part of my cervix had been contributing to the complications I faced. This experience served as a stark reminder that a hysterectomy, though significant, does not offer a panacea for endometriosis.

The ensuing two-year period was dedicated to my recovery, during which I received support from injections and underwent pelvic floor physical therapy—an endeavor that carried a substantial financial burden. However, the investment was unquestionably worthwhile. As time unfolded, I slowly began to reclaim fragments of the person I had once been, a process that unfolded incrementally, symbolizing a triumphant resurgence from the depths of my struggle.

Life After the Final Surgery

As the year 2020 dawned, I was on the cusp of embarking on a journey towards acupuncture school, fueled by the aspiration to aid women grappling with pelvic issues. My overarching desire was to savor the experiences that my 30s had to offer, a luxury that eluded me in my formative years. The semblance of a “normal” teenage existence had always eluded me, despite the steadfast presence of cherished friends who would accompany me through moments of pain by reading to me while I soaked in the bathtub or simply lying beside me, sharing the solace of watching TV. Yet, there lingered an undeniable yearning for the quintessential rites of passage that my peers looked forward to, like school dances and similar occasions.

Navigating the realm of dating posed its own set of challenges, as I grappled with the prospect of sharing my pain. The thought of broaching this topic felt inherently awkward. Amidst these trials, I’ve reached a point of acceptance regarding my inability to conceive. While I hold hope that this joy might be realized through my brothers’ future families, I’m aware of the option to harvest my eggs due to the presence of my remaining ovary (the other was removed during my college years). However, the specter of undergoing another hormone-injected process and potentially triggering a resurgence of my endometriosis looms large, a prospect I’m unwilling to embrace after enduring 12 surgeries between the ages of 14 and 25.

Upon learning of Lena Dunham’s own hysterectomy, a surge of empathy flooded my heart for her plight. Though I’ve achieved a sense of reconciliation with my own circumstances, a palpable undercurrent of disappointment persists. It’s difficult to ignore the realization that alternate paths and outcomes might have been within reach. The knowledge that hysterectomies don’t invariably equate to a cure, and the specter of enduring a lifetime of pain while wrestling with endometriosis, serves as a sobering reminder. The intricacies of treatment are inherently multifaceted and unique, tailored to the individual needs of those grappling with this condition.