Endometriosis is a painful disease of the female body that occurs when the endometrial lining blooms in areas other than the uterus. This tissue often adheres to the ovaries, fallopian tubes, and pelvic cavity. In advanced stages, it can spread to the intestine, bladder, and in rare cases, it has been reported to spread to the lungs, heart, and even the brain. Endometriosis affects 1 in 10 women of reproductive age, but little progress has been made in terms of treatment options. The lack of information and available medical advice has left women struggling to cope with their physical and emotional trauma with little hope of finding a permanent solution.

As a child, puberty hit me like a tidal wave at the tender age of ten. There were no warning signs and I had yet to get the puberty pep talk or start sex ed in the classroom. I remember hearing from a friend that periods were something a woman had once in her life, and even the thought of menstruating for a full week nearly set my teenage mind on fire. When I frantically yelled at my mom from the bathroom and presented my situation, she was faced with something she thought she had years to prepare for. It was at that moment that the roller coaster started.

The bread started almost immediately. I’m not talking about typical uterine cramps, I mean intense shooting pain that radiated through my pelvic cavity and lower back, down my legs and through the soles of my feet. I missed school a lot and spent a week out of every month curled up in a fetal position, holding on to a heat pack for dear life. I struggled to comprehend in my ten year old mind why this had suddenly become my fate as I lay in bed listening to the carefree game of my companions outside. At that moment, I felt that I had to be the only one; now, given the statistics, there were probably plenty of other little girls at home with their mothers, facing a similar battle.

Of course my parents were worried. We were constantly in and out of doctors’ offices for physicals and ultrasounds. Each time they indicated a new specialist who quickly moved us to the next one. By the age of thirteen, I had at least ten ultrasounds under my belt and was referred to a handful of gynecologists without an explanation of the cause of my pain. So for the next nine years, I bit my tongue and fought the pain of what doctors chalked up to simple ovarian cysts and heavy periods.

As a result of the pain, I missed a lot of work due to absence. I felt my self-esteem drain more with each company that let me go. I even began to wonder if this was all “in my head”; after all, they had never told me that something was wrong with me. Anxiety and depression jumping on the pain bandwagon proved just as debilitating. For years I had been fighting a mysterious and painful monster inside of me. With no answers or hope in sight, he reduced me to a weak, self-loathing confinement.

At age 22, while visiting family in British Columbia, I was rushed to the ER in the middle of the night. I felt like a bomb had gone off inside me. I arrived pale and writhing in pain, and for the first time, the medical staff took me seriously. I was due to have emergency surgery in the early hours of the morning so they could cut me open and take a close look at what the ultrasound couldn’t find. When I woke up from surgery, I finally had answers. When I came to in a daze, the surgeon was at my bedside to explain that they had found severe endometriosis. He called my case “stage IV” and said it had spread like wildfire through my body. He went on to explain that although they had not felt comfortable removing my ovaries, this would greatly affect my fertility and chances of having a child. He left me several photos of my pelvic cavity before and after surgery and did his best to answer my questions.

I lay in that hospital bed and tried to accept the news that I had received just hours before. Due to lack of space in the hospital, I was kept in the maternity ward, which seemed like a cruel joke under the circumstances. Throughout the night I heard women plowing in nearby rooms while I, too, suffered from twitch-like pain caused by a very different diagnosis. Every day that I recovered physically, I fell apart emotionally. During all those years of pain, I had never felt alone. Receiving the answers she had been searching for all those years did not bring the closure she had hoped for and only made the future seem more bleak. I wondered why me? If there is a God, how could he do this to me? I was born with a strong maternal sense, this cannot be my destiny.

I struggled for the rest of my twenties, but these years gave me time to reflect, grieve, and gain coping mechanisms to help me lead a more productive and peaceful existence. I underwent more surgeries to clean up endometriosis spatter and improve bladder and bowel function after a few painful episodes. When I recovered, I decided it was time to take matters into my own hands. Frustrated with the lack of guidance provided by medical personnel, I vowed to arm myself with the tools necessary to do everything in my power to delay the destruction of the disease. I researched endlessly. I completely changed my diet to make sure I didn’t eat foods that would literally feed the disease. It was encouraging to be aware of the aspects of endometriosis that were under my control. I have learned to be patient with my body and encourage healing through healthy eating, gentle exercise, and positive self-talk. I continue to take each day as it comes and understand that living with chronic pain often forces you to make adjustments. I have hope again for the first time in a long time, but I know my fight is far from over.

This disease has no limits and in terms of cure or successful long-term treatment, the world of medicine lags behind. My story is not weird. Too many women go through similar experiences and feel ignored and isolated. Women have taken their own lives after battling the physical and emotional aspects of endometriosis, which for some means chronic, daily pain that results in the inability to get out of bed, have a career, or have a child. Fortunately, many people with endometriosis have begun to communicate with each other through online forums in an attempt to connect with others who can relate, sympathize, and offer advice and sympathy. Many of these women have come together to raise awareness and organize charity events to raise money for much needed research. They have established petitions targeting the government and the medical field in the hope of shedding light on the often-underplayed effects endometriosis has on the quality of life for millions of women around the world.

If you or someone you know is struggling with menstrual problems or pain that is more than just cramps, let your doctor know right away. If they reject you without enough answers, keep at it. The sooner you can control endometriosis, the better your chances of delaying the disease before it threatens fertility and/or organ function. Reach out to those around you and join a support group. There really is no better support than for those who are also living with endometriosis and I cannot encourage this enough. It has helped me gain empowerment, support, and valuable insights that cannot be found through a Google search. If we continue to come together, keep moving forward, and express our experiences, our voices will eventually be heard. We are not only fighting for our own health, but for future generations of women for whom protection is not yet available.

© Brittany Dayman