What are your endometriosis symptoms like?
My Endometriosis symptoms affect every aspect of my life. I experience the most acute symptoms around the time of my period: debilitating cramps that last four days and do not respond to medication, stabbing pains in my abdomen and pelvis, extreme fatigue, diarrhea, nausea, painful urination, blood in my urine, loss of appetite, back pain, and heavy bleeding. These symptoms make me curl up in a ball and cry for hours on end. They’re the worst thing I’ve ever experienced. Throughout the rest of the month, I experience chronic pelvic pain, chronic fatigue, pain with digestion, exercise, and pain when I go to the bathroom. Sometimes the pain gets so bad it wakes me up from a deep sleep. I cannot stress how much these physical symptoms affect me mentally. Living with an unpredictable whole-body disease like Endometriosis is distressing and anxiety-inducing, especially when your painful symptoms aren’t taken seriously.
What was your journey to diagnosis like?
To receive a diagnosis of Endometriosis took me eight years of persistently advocating for myself, starting from the age of 13. My periods were never normal, and I knew this from talking to my friends about their periods. Between the ages of 13 and 20, I saw six different general practitioners before one of them finally took my pelvic pain seriously, and they referred me to a gynecologist. I spent years being misdiagnosed, gaslighted, and ignored while trying to cope with severe symptoms of this disease. It impacted me in so many ways, and I often wonder how much happier I would have been as a teenager had my concerns been listened to at the time. I was finally given a non-surgical diagnosis based on a pelvic ultrasound and pelvic exam at age 21. Even after 17 years of painful symptoms, I’m still waiting to have a surgical diagnosis and excision to this day at age 29. My medical journey so far has included 6 GPs, 2 gynecologists, 1 urogynecologist, 1 naturopath, 1 pelvic floor physiotherapist, 1 acupuncturist, 1 chiropractor, and soon, 1 minimally invasive gynecological surgeon. In our current medical system, if you don’t aggressively advocate for yourself, you will not receive a diagnosis.
What has your experience with treatment for endometriosis been?
Over my 17 year Endometriosis journey, I’ve tried six different birth control pills, a variety of pain medications, natural remedies, supplements, diet changes, and lifestyle changes. Non-surgical Endometriosis treatment is essentially trial-and-error with hormonal medications and NSAIDs, and surgery is a last resort. For me, while hormonal treatments can be effective at managing acute pain, they cause unbearable side effects when they contain Estrogen. I’ve had the most success with progestin-based birth control (the mini-pill) to manage my acute symptoms. In addition, I use vaginal suppositories containing gabapentin and baclofen on really bad days. To manage bothersome daily pain symptoms, I’ve found success with medical cannabis (a 1:1 mixture of CBD and THC) and NSAIDs. I avoid inflammatory foods (dairy, caffeine, alcohol, meat), and I take fish oil supplements and magnesium. I make sure to get plenty of gentle exercise such as walking and yoga. Pelvic floor physiotherapy also helped to reduce some of my pain symptoms.
How does endometriosis affect your day-to-day life?
Endometriosis affects me from the moment I wake up until the moment I go to bed. It’s hard for people to comprehend that I live with pain every day, but it’s my reality. People see a young person who smiles on the outside and they assume you’re healthy, but in reality, my life truly revolves around combatting my pain. I can only wear loose-fitting clothes due to the constant throbbing in my abdomen. I can’t drink alcohol or have caffeine like normal people because it will trigger inflammatory symptoms, and my diet has to be extremely restrictive. I changed careers because I couldn’t handle the stressful symptoms of this disease on top of my stressful job, and I have to rely on my partner financially when I’m not able to work. It’s hard to have a social life because of the stigma of being chronically ill, and because of unpredictable symptoms ruining your plans. I’ve had to put off milestones like having children because my pain is so intense without birth control that it’s emotionally distressing. I have re-arranged my entire life to abate Endometriosis as much as possible, but it still limits me every day. I wish more people understood that.
How does endometriosis affect your emotional well-being?
Endometriosis is extremely hard to cope with emotionally. Imagine being in pain for years and not having your concerns taken seriously by medical professionals; that alone would cause anyone psychological distress. Now, add in years of scary, painful, debilitating symptoms, years of worrying about your health, years of not being able to have sex without pain, not being able to sleep through the night without pain, and knowledge that the pain is going to worsen over time. Add in the fear of never being able to live the live you wanted, and the fear of potentially never having children. Those are just a few of the realities Endometriosis patients have to live with. On top of all that, inflammation in the body can exacerbate mental health issues. When my physical symptoms flare-up and inflammation levels are high, my anxiety and depression worsens. It’s not a coincidence. Living with Endometriosis is living a cycle of physical distress that leads to emotional pain.
How has endometriosis shaped turning points in your life up until now and looking toward the future?
Before my diagnosis, I used to have a very stressful job as an Interior Designer. As my symptoms got worse, working was not feasible anymore. I couldn’t manage my pain on top of my professional responsibilities, and « my period is incredibly painful » isn’t seen as an acceptable excuse for missing work.