What are your endometriosis symptoms like? It felt like my right ovary was burning from the inside out, or that I had been branded inside with a hot iron. The pain would sear repeatedly and bouts of pain lasted from 2- 8 hours and cycled about twice a day every day for 6 months. The pain always came in the middle of the night and forced me out of bed. I also had repeated painful bowel movements when the pain was searing. My lower back was always in agony and I had referred pain shooting through my side.

What was your journey to diagnosis like? I was diagnosed with endo 20 years ago but it never meant anything other than I had bad periods. No one ever offered any treatment nor was there any follow up. My periods got worse between 45 and 50 years of age and I started to get an intermittent ovarian pain. My nightmare began in the ER where a Dr. told me I had a 7 cm cyst on my right ovary that would go away on its own. Two GYNs declined my family doctor’s referrals to follow up – one of them declined to see me because I required immediate care and she couldn’t see me for 6 months. I went back to the ER 3 weeks later when the pain hadn’t improved and the endometrioma had grown to 8 cm. The ER Dr. kindly referred me to a GYN accepting patients who was only able to see me 6 weeks later. Although I had a history of endometriosis and symptoms of deep disease and no effective pain medication, she put me on Visanne and ordered an ultrasound 6 weeks later. Then she waited 2 weeks to share the results which showed deep infiltrating endometriosis. She said that I required specialized care which she could not provide but she could refer me to an endo specialist. She expected it would take 6 months to get an appointment and another year to get surgery and she had no opinion about which Dr. to approach. I had been in excruciating pain for 4 months at that point and it felt like no one really cared. A friend of mine knew a GYN based within a hospital and asked for help — two months later they scheduled my surgery which otherwise would have taken another year through the referral process.

What has your experience with treatment for endometriosis been? I was offered many pain meds that were ineffective: Advil, Tylenol 3, Naproxen. Finally I started Visanne which did nothing for the pain but I had to take it for 6 weeks before the Dr. would assess its efficacy. I was offered Lupron but when I raised evidence-based concerns about negative side effects, no one validated them or could offer anything safer. I eventually agreed to try Lupron because the pain was unbearable and I did not have bad side effects (so far) but everything I had read made me terrified to take it. On my own, I sought acupuncture, Traditional Chinese Medicine herbs, physiotherapy, pain relief from CBD oil, and education and support groups, but none of the Drs. I saw helped me find them nor did they validate any of these approaches. During this process, I was most shocked by all the Drs.’ lack of priority to address my excruciating pain.

How does endometriosis affect your day-to-day life? For five months I was barely functioning either because I was writhing in pain or I had missed so much sleep from the pain. I could barely walk from the pain so I was unable to exercise or just take a stroll. I stepped away from anything social and I lay in a ball on the couch most of the time. My employer was extremely supportive and that is the only reason I didn’t have to quit my job.

How does endometriosis affect your emotional well-being? I struggled with depression during that time, largely related to the lack of sleep. I just couldn’t function. I felt like no one was helping me and no one cared about the pain. My family didn’t know how to help me and they were scared too. I had no intimacy with my husband at all as I was always in pain.

How has endometriosis shaped turning points in your life up until now and looking toward the future? I managed my period-related symptoms all of my adult life and worked around endo. I had to modify plans around my periods but I just got used to that. When my problem became acute I suddenly had to make a decision to have a hysterectomy and excision. I wish I had received knowledgeable care for the last 20 years so I didn’t end up in crisis.

How have you found hope and support in your endometriosis journey? Honestly I didn’t feel supported much. I felt entirely alone with the exception of my acupuncturist. What I learned through support groups didn’t mesh with what Drs. told me so that was very stressful. In the end I had to accept treatments that I wasn’t really comfortable with.

What do you think healthcare for endometriosis in Canada should look like? Family doctors need to be able to identify endo and GYNs need to be available in a timely fashion to respond, especially when patients are in great pain. Surgery needs to be easily accessible and we need better and safe meds to control pain. We also need integrated holistic care.

What do you think it is important for people to know about the experience of having endometriosis in Canada? It is like winning the unlucky lottery. You will be in great pain. You will struggle to find professional GYN care. Then you will learn that the specialist is not specialized enough. You will never get a second opinion because you will just be lucky to get the first one. You will feel that the system is broken.