Endometriosis is a painful disease of the female body that occurs when the endometrium lining flourishes 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 bowel, bladder, and in rare cases, has been reported to spread to the lungs, heart, and even the brain. Endometriosis effects a staggering 1 in 10 women of reproductive age, yet little progress has been made in terms of treatment options. The lack of information and medical advice available 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 receive the puberty pep-talk or begin sexual education in the classroom. I recall hearing from a friend that periods were something a woman got once in her lifetime, and even the thought of menstruating for one full week, nearly caused my adolescent mind to combust. When I frantically shouted to 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 this point that the rollercoaster was set in motion.
The pain started almost immediately. I’m not talking about your typical uterine cramps, I mean intense stabbing pain that radiated through my pelvic cavity and lower back, down my legs and through the soles of my feet. I missed a lot of school and spent a week of each month curled up in the fetal position, clinging to a heating pack for dear life. I struggled to wrap my ten year old mind around why this had suddenly become my fate as I laid in bed listening to the care-free play of my peers outside. At the time, I felt like I had to be the only one; now given the statistics, there were probably so many other little girls at home with their moms, faced with a similar battle.
Of course my parents were concerned. We were constantly in and out of doctors offices for physical exams and ultrasounds. Each time we were pointed to a new specialist who quickly passed us on to the next. By thirteen, I had at least ten ultrasounds under my belt and been passed off to a handful of gynaecologists without an explanation for the cause of my pain. So for the next nine years, I bit my tongue and fought through the pain of what doctors chalked up to being 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 worth depleting more with each company that let me go. I even began wondering if this was all “in my head”; after all, I had never been told that anything was in fact wrong with me. The anxiety and depression that hitched a ride on the pain train proved to be equally debilitating. For years I had been fighting a mysterious, pain wreaking monster within me. With no answers or hope in sight, it whittled me down to a weak, self-loathing shut-in.
At 22 years old, while visiting family in British Columbia, I was rushed to Emergency in the middle of the night. It felt as though a bomb had erupted inside of me. I arrived pale and writhing in pain, and for the first time, was taken seriously by medical staff. I was to have emergency surgery in the early hours of the morning so they could open me up and get a close look at what ultrasound failed to find. When I woke up from surgery, I finally had answers. As I groggily came to, the surgeon was at my bedside to explain that they found severe endometriosis. He rated my case as “stage IV” and said It had spread like wild fire through my body. He went on to explain that though they had not felt comfortable removing my ovaries, this would greatly impair my fertility and chances of carrying a child. He left me with several pictures of my pelvic cavity pre and post surgery and did his best to answer my questions.
I laid in that hospital bed and tried to come to terms with the news I had received just hours earlier. Due to lack of space in the hospital, I was kept in the maternity ward, which seemed like a cruel joke given the circumstances. Throughout the night I heard women labouring in nearby rooms as I too endured contraction-like pain caused by a very different diagnosis. Each day as I recovered physically, I unravelled emotionally. Through all those years of pain, I had never felt so alone. Receiving the answers I had been seeking all those years didn’t bring the closure I had hoped for and only made the future appear more daunting. 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 just can’t be my fate.
I struggled throughout the rest of my twenties but these years provided me the time needed to reflect, grieve, and obtain coping mechanisms to help lead a more productive, peaceful existence. I went through more surgeries to clean up endometriosis spatter and to improve bladder and bowel function after a few painful episodes. When I got back on my feet, I decided it was time to take matters into my own hands. Frustrated by the lack of guidance provided by medical staff, I vowed to arm myself with the tools needed to do anything in my power to slow the destruction of the disease. I researched endlessly. I completely altered my diet to ensure that I was not consuming foods that quite literally, fed the disease. It was empowering to get on top of the aspects of endometriosis that were within 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 ages, but know my fight is far from over.
This disease knows no limits and in terms of a cure or successful long term treatment, the world of medicine is behind. My story is not an uncommon one. Way too many women go through similar experiences and are left feeling ignored and isolated. Women have taken their own lives after battling the physical and emotional aspects of endometriosis, that for some, means chronic, daily pain resulting in the inability to get out of bed, have a career, or carry a child. Thankfully many endometriosis sufferers have begun reaching out to one another through online forums in attempt to bond with others who can relate, commiserate and offer advice and sympathy. Many of these women have banded together to raise awareness and organize charity events to collect funds for much needed research. They have set up petitions directed at the government and medical field in hopes of shedding light on the often downplayed effects endometriosis has on the quality of life of millions of women worldwide.
If you or anyone you know is struggling with menstrual issues or pain that is anything more than cramping, bring it to your doctors attention immediately. If you are turned away without sufficient answers, keep pushing. The sooner you can get on top of endometriosis, the greater your chances are of slowing the disease before it threatens fertility and/or organ function. Reach out to those around you and join a support group. There truly is no better support than from those who are also living with endometriosis and I can’t encourage this enough. It has helped me gain empowerment, support, and valuable knowledge that cannot be found through a Google search. If we continue to band together, keep pushing forward and put our experiences out there, our voices will eventually be heard. Not only are we fighting for our own health, but for the generations of women to come to whom no protection is yet available to.
© Brittany Dayman