At just ten years old, during a school camping trip, I first experienced an excruciating pain that felt like it was ripping me apart from the inside. In that moment, I truly believed I was dying. No one had prepared me for the reality of periods or the challenges of endometriosis; little did I know that this was just the beginning of a lifelong struggle. Throughout the years, I endured heavy bleeding that required me to use both a pad and a tampon, changing them hourly. I mistook my suffering for a sign of weakness, convinced that everyone else must be managing just fine. When I voiced my concerns to doctors, the response was always the same: a dismissive look that clearly communicated, “Some women just have to endure this.” And so, I did—silently and without much hope.
The cramps in my legs felt like strange, pulling sensations, while my abdomen twisted and contorted with stabbing, crushing pain. A relentless ache radiated to my back and other unexpected areas. Even going to the bathroom felt like a torturous ordeal; I would grip the walls, stifling cries as sharp pains surged through me. I foolishly accepted this as a normal part of being a woman.
Facing the Reality of Endometriosis
It wasn’t until I reached my late teens that I finally consulted a gynecologist. By that point, my ability to function was severely limited. They recommended laparoscopic surgery as a common procedure. However, when I regained consciousness, the doctor revealed that they had discovered a large tumor that necessitated further surgery for removal. The verdict? A benign tumor and, almost as an afterthought, endometriosis. I received a pat on the shoulder, advised to continue taking birth control until I was ready for children, and was assured that everything would be all right. At that moment, I was unaware of how wrong they were.
In my twenties, I immersed myself in my career within Sydney’s magazine industry. The ambition and fast-paced environment allowed me to temporarily push aside the pain. With my family far away in Melbourne and no one to confide in, I bottled everything up. What was once my dream job became a coping mechanism; I buried my agony beneath deadlines and events, striving to maintain control. Yet, the years rolled on, and I increasingly missed out on cherished activities—time with friends, travel opportunities, spontaneous adventures—all slipping through my fingers while I lay curled up at home, hoping to ride out the next wave of pain.
In my thirties, I met the love of my life, and we began crafting a future together. When the time came to start a family, I stopped taking birth control, and that’s when the pain escalated to an unbearable level. Each month, I reserved days in my calendar to cope with it, canceled plans at the last moment, and pretended to be “fine,” fearing that others would label me as unreliable. The truth was, I struggled to function at all.
As my health further declined, I turned to extensive research on endometriosis and sought alternative treatments like acupuncture, magnesium baths, and heating pads. While they provided minimal relief, nothing eased the persistent agony. I discovered online support groups and began connecting with women who truly understood my plight. Sharing our stories and treatment strategies helped me feel less isolated.
Conceiving with Endometriosis
As my health continued to unravel, my aspiration to become a mother culminated into an unexpected battle. My partner and I endured years of IVF, numerous surgeries, and stretches where I could only count on one or two pain-free weeks each month. Eventually, the only option left was a radical hysterectomy, which stripped away my hope for biological children and abruptly thrust me into menopause. In that instant, the life I had known vanished, replaced by an unending cycle of loss.
But amidst the darkness, a spark ignited within me. Post-surgery, I felt compelled to reclaim my narrative and find empowerment through my pain. I was determined to raise awareness about endometriosis and chronic pain, ensuring that others felt seen and understood—so they wouldn’t have to endure the isolation I once faced. It became my mission to stand with others, urging them to find their own voices in a medical system that often overlooks our suffering.
Today, my journey has granted me renewed purpose. Through advocacy, I have connected with women navigating similar experiences and contributed to a movement striving for improved understanding and treatment of endometriosis. Yet, as I reflect on my past, I wish I had spoken up sooner—I wish I had realized I didn’t have to suffer in silence.
Embracing Communal Pain
I hope my story reaches other women, reassuring them that they are not alone and that their pain is both real and deserving of acknowledgment. For too long, women’s pain has been trivialized and dismissed as just part of our existence. However, endometriosis is far more than “bad cramps”; it’s a chronic, often debilitating condition impacting every aspect of life. While strides have been made in awareness, we are still miles away from where we need to be.
The path has been challenging, but I aim to ease the journey for others by sharing my experience. Endometriosis remains widely misunderstood, leaving many women in the shadows, told they are simply “unlucky.” I aspire to shift that narrative, advocating for earlier diagnoses and better treatments, ensuring that future generations don’t feel as alone and invalidated as I did.
To every woman reading this who has been advised to “just deal with it,” or made to feel that her pain does not count—know that your voice matters, and your experience matters. We deserve a healthcare system that listens, believes, and seeks to understand us. Sharing our stories is just the beginning, but it is a crucial first step toward a future where endometriosis is recognized for what it truly is: a serious health condition deserving of respect, research, and meaningful solutions.
Understanding Endometriosis
Endometriosis is a chronic condition characterized by tissue similar to the uterine lining growing outside of the uterus, often affecting the ovaries, fallopian tubes, and pelvic cavity. This abnormal tissue reacts to hormonal changes, leading to inflammation and the formation of scar tissue. Common symptoms include intense menstrual cramps, ongoing pelvic pain, pain during intercourse, and infertility.
Approximately one in seven individuals assigned female at birth are affected by endometriosis, yet obtaining a diagnosis can often take years due to overlapping symptoms with other conditions and the absence of standardized diagnostic procedures. Currently, diagnosis relies on laparoscopy—a surgical procedure—as non-invasive testing methods are not yet available, resulting in significant delays.
Causes of Endometriosis
The exact cause of endometriosis remains elusive, but it is thought to arise from a mix of genetic, hormonal, and immunological factors. Some theories suggest retrograde menstruation—where menstrual blood flows backward into the pelvic cavity—could play a role in the displacement of endometrial-like cells. Other hypotheses indicate immune dysfunction, allowing these cells to settle outside the uterus or that genetic predisposition may influence the condition. The challenge remains that endometriosis is considerably underfunded and under-researched, despite its prevalence among those with a uterus, highlighting the urgent need for more inquiry and funding.
Treatment and Management of Endometriosis
While there is no cure for endometriosis, typical treatments include hormonal therapies, such as birth control pills, GnRH agonists, and progestin-based options, aimed at curbing the growth of endometrial-like tissue. Pain management often involves non-steroidal anti-inflammatory drugs (NSAIDs) and may incorporate techniques like physical therapy, acupuncture, and lifestyle adjustments concerning diet and exercise. In more severe situations, surgery may be advised to excise endometrial growths and adhesions. Many individuals with endometriosis require continuous management and supportive care to effectively address their symptoms.
Jo Barry’s personal battle with endometriosis inspired her to create Scarlet, a period care brand focused on offering essential support for those enduring menstrual discomfort. The brand’s flagship product, rae, is a wireless heat device designed to provide soothing relief anytime and anywhere it’s needed. Through Scarlet, Jo seeks to empower individuals with innovative self-care tools while raising awareness about period wellness, helping others find comfort and strength in their journeys.
