What are your endometriosis symptoms like? My endometriosis symptoms are debilitating cramps during my cycle, painful ovulation, extreme fatigue, and random pain and cramps throughout the month. When I have flare ups due to endo, I feel like I’m being stabbed with a hot knife, while someone is twisting my insides. Before my diagnosis, my doctors told me this was all normal, but it didn’t feel normal.
What was your journey to diagnosis like? I started having horrible pain at the age of 13. It took me 10 years to finally receive a proper diagnosis through a laparoscopy. I went through multiple gynecologists, fertility doctors and general practitioners. Ultrasounds came up clear, some appointments were even paid for out of my own pocket. I was finally referred to my specialist at the age of 23. Based off a physical exam alone, he said he could feel endometriosis nodules which likely indicated I had either stage three or four, but the only way to be sure was through surgery. We did an MRI prior to, which showed some abnormalities – it turns out my uterus and bowel had been fused together by my endometriosis. Throughout my experience of trying to be referred to a specialist, I was told I likely didn’t have it unless I was in pain daily. I was put on countless birth controls and medication, all of which came with side effects. I was told to just have more children as a “cure” (one doctor even told me to “just have 4-5 more pregnancies and breastfeed each” when I was already a single mom!) or that we’d worry about it when I wanted another baby. That surgery shouldn’t even be an option, at the risk of affecting my future fertility. My ability to have children was more of a priority than my chronic pain and quality of life.
What was your experience with treatment for endometriosis been? Personally, I still haven’t found a treatment plan that works for me. I’ve had side effects with every birth control I’ve taken. I’ve tried Visanne and other medication for pain. Before I had my daughter, I was on Marvelon for years and that worked wonderfully to stop the pain, but it no longer does. Laparoscopy can also give you a few months or even years of relief. The best way to figure out the treatment plan that will work for you is to talk to a specialist who understands how debilitating endo can be. My heating pad is the only thing I can rely on right now, for the slightest bit of relief.
How does endometriosis affect your day-to-day life? Endometriosis took away most of my high school experience for me. I missed a lot of school because of how pain I was in, and it affected my mental health because nobody understood how badly it hurt. I started believing that I was just being overly dramatic. I remember being in an exam, having horrific pain and not even being able to sit down. I begged my teacher to let me re take it another day, crawled across the school to make it to the bathroom, throw up, and then passed out in a taxi. We have to stop telling women, but especially young women, that this is normal. It’s not. Having a proper diagnosis has made me feel like I’m not crazy, but there are still days where I’m unable to even move. Now that I have a daughter of my own, it’s become even more difficult when I have a flare up.
How does endometriosis affect your emotional well-being? When you have suspected endometriosis or even endometriosis in general, you’re made to feel like you’re lying. We’re constantly told that painful periods are normal, but the truth is that cramps are uncomfortable, but they should never be debilitating. I felt alone and started believing that it was all in my head. Even with a proper diagnosis, I often feel like people think I’m being overly dramatic. But that’s why it’s so important to keep talking about endo – the misconception that this is something normal that women have to go through is what’s holding us back and delaying diagnoses.
How have you found hope and support in your endometriosis journey? Without endometriosis support groups on Facebook, I probably wouldn’t have a diagnosis today. Most of the women in these groups are more educated about the disease than the doctors I’ve seen, and they put me on the right path and encouraged me to keep pushing for a diagnosis. Specifically for Canada, the Endometriosis Network Canada on Facebook has compiled a list of specialists in each province, which was a huge help when picking a specialist when I did get my referral.
What do you think healthcare for endometriosis in Canada should look like? I feel that healthcare providers need to listen to their patients symptoms more. Birth control should be a tool to help ease cramps, but not a permanent solution and not a replacement for a laparoscopy. Solely prescribing birth control instead of referring your patient to surgery is like putting a band aid on a broken arm without doing an X-Ray. A referral to a specialist should not be as difficult as it is. Endometriosis & other women’s health issues should be taught in sex education and we need to stop telling women these problems only matter when they’re trying to have a baby.
What do you think it is important for people to know about the experience of having endometriosis in Canada? Endometriosis is not just bad cramps. It doesn’t even come close. The more we talk about endometriosis and become knowledgeable on the subject (regardless if you suffer or not, odds are, you probably know someone who does), the more likely we are to make steps towards better treatment options and less of a wait time for diagnoses for all the women currently suffering, and who will be in the future.