What are your endometriosis symptoms like? My symptoms are definitely not as bad as some others, but I get really severe pelvic pain before, during, and after my period. I get incredibly sick to my stomach. I have chills and sweats, and I can’t keep any food down. The pain gets so bad my head spins and I feel like I am going to pass out (which sometimes I actually do). I also get pain frequently due to endometrioma cysts on my ovaries, and they sometimes rupture which is excruciating.
What was your journey to diagnosis like? I’ve had intense cramps since I started my period when I was 13. I missed a LOT of high school because I was in so much pain and so nauseous that I couldn’t get out of bed. My doctor was really nice but she never suspected anything other than the typical period pain and so I tried a couple birth control pills that gave me awful side effects. When I was in my mid-20s, it got so bad I was missing work and having panic attacks because I couldn’t afford to lose my job but I couldn’t work with the amount of pain I was in. My family doctor wasn’t sympathetic at all and, although he sent me for pelvic ultrasounds, he just gave up and prescribed yet another birth control. I went out of town one weekend and experienced the worst pelvic pain I’d ever had. I went to the emergency room and it turns out I had a cyst on my ovary that had ruptured, in addition to another on my other ovary. The emergency room doctor was a true blessing and it was because of him that I got a referral to a gynaecologist, and from there I got a referral to a specialist. Based on my history, and without any surgery, the specialist was 99% sure I had endometriosis and started me on a medication that has changed my life. I suffered for about 12 years.
What was your experience with treatment for endometriosis been? I tried a lot of birth control pills at the beginning, but they all gave me migraines with auras which can be incredibly dangerous and scary! I stopped taking them and just suffered through the pain for a few years. I was prescribed Tylenol 3 and about 3 or 4 other prescription painkillers, but you can’t really function as a human while on those things so it wasn’t a long-term solution. I saw a gynaecologist who suggested I try an IUD instead. That didn’t go well; I was in so much pain every day and spotting way more than normal, and I had to have it removed. When I got my referral to the specialist it changed my life. I am very fortunate to live in a city with the BEST endometriosis specialist. He explained everything to me in a way that was very clear and suggested I try a pill that was progestin-only. He prescribed me Norlutate and, as long as I take it every single day at the same time, the only pain I get is due to the endometrioma cysts!
How does endometriosis affect your day-to-day life? I’ve definitely felt an impact on my quality of life due to endometriosis. It’s impossible to be social when you have a flare-up. We host weekly game nights and I often had to duck out early or stay in my bedroom all night with my heating pad. I called in sick from work 3-4 times a month, and if I did show up I was completely useless. I didn’t know anyone who had endometriosis at first, so I had no support system to help me through the bad days and to just vent about how terrible and scary it is.
How does endometriosis affect your emotional well-being? It’s almost impossible to sleep during a flare-up without some kind of strong painkiller and a heating pad, and even then I wake up throughout the night. It’s also challenging to be in a relationship when the person (a) wants to help but feels useless and (b) doesn’t really understand what you are going through. It’s also tricky because one of the issues with endometriosis is pain during sex, so that can prove stressful! Infertility is something that terrifies me. At 30, I am having a really hard time thinking about trying to have kids. I am terrified that I won’t be able to, and I am equally afraid of the pain coming back when I stop taking my medication. Endometriosis can make you feel broken, like you’re not a complete woman because there’s something wrong with you. It’s a terrible feeling and without support it can drown you.
How has endometriosis shaped turning points in your life up until now and looking toward the future? The job I have is wonderful. I have an employer now who understands my medical conditions and, if I need to go home early or take some time off, I’m not written up or pulled into the office. It’s not where I saw myself at all; I went to school to become a teacher, but I have a hard time imagining being in a classroom after all the classes I missed in high school! But I love my job and I am glad I found a place where I fit. I want desperately to start a family, but I am so incredibly afraid that I will be unable to do so. I think about it pretty much all day, every day. I am just so lucky to have a partner who tries his best to help me however he can, even if it’s just a hug!
How have you found hope and support in your endometriosis journey? The most helpful thing I’ve found is a support group on Facebook. Because endometriosis is so different for every woman who has it, even my 2 friends who have been diagnosed have different problems and solutions from me. It’s great to have such a huge group of people because there is usually a few people who are going through something similar and can talk you through their experiences. I’ve also got someone from my home town in Nova Scotia who is incredibly helpful and supportive, and I really look up to her positive attitude! It helps me view this awful condition with a little more optimism than I otherwise would.
What do you think healthcare for endometriosis in Canada should look like? Awareness is key. The fact that my family doctor in high school and university didn’t even mention the possibility of endometriosis, and that I had to hear the word for the first time when I was in my 20s, is absolutely insane! It shouldn’t be up to the people who suffer to talk about their stories; it helps, but doctors and health care providers need to educate themselves and spread the word among their colleagues. I do my best to tell anyone who will listen, since so many women suffer without any diagnosis or treatment, but endo sufferers can only do so much by ourselves! If people know more about endometriosis, I hope it will lead to more research and therefore more treatment options, or at least more doctors across the country who are able to help. I also think it might help to have financial supports in place for those who are unable to work because their pain is so severe every single day. Even for me, if I miss a couple of days of work I could lose pay that I need to support myself. I can’t imagine how much harder it would be if I couldn’t work at all.
What do you think it is important for people to know about the experience of having endometriosis in Canada? Having endometriosis is a struggle! The fact that 1 in 10 women suffer from this awful condition, yet I didn’t hear about it until my 20s, is unacceptable! Canada needs to do a better job talking about endo and training more doctors to help women who need it. Nobody should have to be in agony for (in my case) 12 years without getting any real help. It’s a terrible way to live and can impact not just your physical health but also your mental health.