How Many More? The System's Deadly Neglect
Freya was brilliant, undeniably so. Even her grumpiness, a constant low hum in her personality, was somehow endearing. Her sister describes a woman of fierce intelligence, humor, and a surprising well of kindness. But Freya's brilliance was overshadowed by a battle fought in the shadows, a battle against endometriosis that ultimately claimed her life.
Freya's passions were a testament to her strength. She loved food, a necessity and a joy in her struggle to maintain her weight. As a qualified personal trainer, she understood the power of movement, living by the mantra, "the more you move, the better you feel." Even as her body betrayed her, she found solace in the gym, a space where she could reclaim control. A passionate advocate for women's rights, she fought for the women under her care in her role as an emergency department assistant, recognizing the systemic neglect she herself faced. And she loved big dogs, the bigger the better, a simple joy in a life increasingly complicated by illness.
Her sister misses the ease of their twinship, a silent understanding that transcended words. "When Freya and I did something together, even complex physical tasks, we could do it in complete silence. Despite being two individuals, together we moved and functioned as one." This ease extended to a profound physical comfort, a sense of safety and reassurance, a unification of two halves.
Freya was stoic, her strength amplified by her illness. She possessed a strong sense of justice, a dry wit, and a fierce loyalty. She was a contradiction, yet this only amplified her potential.
Her symptoms began at 14, at the onset of menstruation. Debilitating pain, heavy bleeding, and overwhelming fatigue were dismissed as "normal." But Freya's endometriosis was not confined to her pelvis. She suffered from thoracic endometriosis, experiencing nosebleeds, chest pain, and breathlessness, all exacerbated during menstruation. By 24, she was experiencing recurring pneumothorax/hemothorax.
It took 12 years and over 30 pneumothoraxes for Freya to be diagnosed, and even then, it was by chance, not by diligent medical investigation. There was no exploration for pelvic endometriosis. The diagnosis came only after samples were taken during a pleurodesis procedure.
Endometriosis shrunk Freya's world. Pain and fatigue were constant companions. Work and the gym, a necessity for pain management, were her only escapes. Her sister recalls a growing sense of isolation, a need to know where Freya was at all times.
The misconceptions surrounding endometriosis compounded her suffering. That it's "just a painful period," that it's "rare," that it's "a gynecological condition," that it's "benign." These dismissals fueled Freya's frustration and despair. The only treatment offered, medical menopause, worsened her symptoms. Support systems were nonexistent. Freya was left isolated, dismissed even when facing life-threatening situations.
The emotional toll was immense. More than the physical pain, it was the constant dismissal and invalidation that crushed her spirit. "She died believing she was of no value," her sister reveals, a heartbreaking indictment of a system that failed her. Freya's diagnosis was accidental, not a result of care or curiosity. Even after diagnosis, she was discharged from appropriate specialties, offered ineffective treatments, and left without proper monitoring.
““We simply don’t understand enough about endometriosis,” her sister asserts. “There needs to be significant investment in research, a recognition that it’s a systemic disease, not just a gynecological one.””
To those struggling with endometriosis, her sister offers a powerful message:
"You know your body. Find a doctor who respects that."
And to those who want to support them:
"Listen, hold space, and have unwavering belief."
Freya's story is not a legacy, but a call to action. "There is no cure without curiosity," her sister declares. "Without professional curiosity, there will be more women harmed. There will be more Freyas."
Freya's story is just one of countless others who have fallen victim not only to the disease itself, but to a system that has promised to uphold the core principles of respect for life, to do no harm, to do good, confidentiality, and overall professional integrity. We must demand better. We must demand change. We must remember Freya, and all those like her, by refusing to let their stories be in vain.
Her story echoes the experiences of countless women, including my own. My symptoms began as early as 8 or 9 years old, with fainting spells and severe stomach pains that led to a series of GI scopes. By high school, I was suspected of appendicitis, but when tests proved negative, I was dismissed. Cysts began to appear, dismissed as 'part of being a woman.' My health deteriorated as I was shuttled between 'professionals,' eventually leading to a stint in a mental hospital. During this period, I began to question my own worth, my pain, my very existence. Told that it was all in my head, I turned to self-harm, seeking physical proof of my pain. The weight of misdiagnosis permeated every aspect of my life, leaving me vulnerable to chronic injury from domestic violence. Eventually, emergency surgery revealed endometriosis on my colon, rectum, and bladder. Two months after excision, I was hospitalized again, on the verge of needing a blood transfusion. A colorectal surgeon became my second savior. After a pregnancy that interrupted unsuccessful non-surgical treatments, I underwent a hemorrhoidectomy, followed by another excision of endometriosis on my large intestine and a hysterectomy for adenomyosis, with a diagnosis of interstitial cystitis. A year later, I required a rectal prolapse repair and colon resection. We currently suspect thoracic endometriosis involvement, another prolapse and I am in active symptom management through pain management and physical therapies.
This is the reality for so many – a reality of years of misdiagnosis, dismissed pain, and a constant battle for validation and to simply LIVE.
The true extent of tragedy caused by endometriosis is only beginning to surface, as more and more stories come to light. We have discovered a disturbing pattern: women whose deaths, while perhaps not directly attributed to endometriosis, were undeniably influenced by the disease and its mismanagement. These include a mix of adverse reactions to medications never fully discussed with patients, deaths by overdose or suicide, and even cases labeled 'Sudden Adult Death Syndrome' triggered by medicine-induced cardiac arrest. One tragic case involved bowel surgery complications stemming from opioid use for pain management, a readily available solution in some countries, like Ireland. Another woman simply laid down and never woke up, with limited details available, yet her connection to endometriosis was clear through her active involvement in social media forums. These are not coincidences; they are symptoms of a system that consistently fails those with endometriosis.
The devastating reality of endometriosis is further illustrated by the heartbreaking stories of women like Nicola Thyne, Trinity Graves, Aubrion Rogers, and Laura Newell.
Nicola Thyne, a 35-year-old mother, faced a 15-month wait for surgery, only to have it canceled and pushed back another 18 months. Overwhelmed by despair, she tragically took her own life in March 2025. Her pre-written letters to her family serve as a stark reminder of the emotional toll of medical neglect. Similarly, 18-year-old Trinity Graves, burdened by the relentless challenges of chronic illness, succumbed to suicide. Her inability to attend school, hold a job, and maintain her ambition led to unbearable suffering.
Surgical complications also claimed the lives of Aubrion Rogers and Laura Newell. Aubrion, after years of dismissed symptoms, died during surgery to remove endometriosis, an ovary, a fallopian tube, her appendix, and endometriomas. She suffered a fatal cardiac arrest during recovery. Laura, in Ireland, died from bowel damage caused by prolonged use of over-the-counter opioids, a desperate attempt to manage her undiagnosed endometriosis pain, which then resulted in fatal surgical complications.
These deaths, and many others, often go without proper acknowledgment of endometriosis as a contributing factor. The condition can lead to organ failure, complications from surgeries performed by inadequately trained practitioners, and fatal overdoses from medications sought for relief. By implementing appropriate screening for endometriosis-related ovarian cancers, enhancing training for medical professionals, and increasing overall awareness, we can potentially prevent organ shutdowns, other life-threatening complications and save lives.
These devastating events underscore the urgent need for systemic change. We must demand improved informed consent practices, explore alternative pain management options, and mandate increased awareness of endometriosis-related complications within the medical community. We must work together—patients, advocates, and medical professionals—to ensure that those affected by endometriosis receive the timely, compassionate, and competent care they deserve. Only then can we prevent such tragedies and honor the lives lost.
