What are your endometriosis symptoms like? The fatigue weighs me down, I’m always scared of pain and suffer from PTSD because of it. Flare-ups are unbearable but I have pain almost every day that nags at me. I have to be careful not to overdo it and have a hard time making plans in advance. Headaches, pelvic pain, lower back pain, sciatic type pain that radiates down my legs, chronic fatigue are all symptoms that regularly make my life more difficult.
What was your journey to diagnosis like? I remember from the time I was 11 and I got my first period experiencing pain that I thought was normal. Through highschool and my work life I missed at least one day from school or work every month because the pain was too much. In the early months of 2017 things became unbearable. I kept thinking the pain would just disappear on its own. It was becoming hard to walk, hard to move, hard to lay down. The pain was becoming more and more intense. I started to think maybe I had something with my sciatic nerve as I was getting intense pains shooting down the right leg I visited a doctor’s clinic, I was told to try physiotherapy. In March 2017, I was visiting my parents. In the middle of the night I was woken up to excruciating pain. I dragged myself to the bathroom finding my period started but I nearly passed out. I walked back into the bedroom and woke my husband up to say I needed to go to the hospital. He said I looked grey. I sat at the emergency room curled in a ball from the pain. I was given Tylenol and waited 6 hours and decided I didn’t want to wait anymore. I went home and slept, but woke up to the same intense pain. I went to the emergency room again but at a different hospital. This time I did get in to see a doctor. They did a urinalysis and bloodwork. I waited a couple hours and saw the doctor again who tells me I have blood in my urine which I say, « I told you I was on my period, so yes it would. » She then said they could do an ultrasound in a few weeks but I didn’t live there so she said I’d have to go back to Nova Scotia to get care. Fast forward to the following month. My period arrived again and the pain was excruciating. I called my husband at work and he came home to bring me to the ER. I sat in a wheelchair in the waiting room for 5 hours, screaming, crying, truly feeling as if I was dying. They took bloodwork and after an hour of waiting they finally got me out back. I was told I had a severe infection. They called a gynocologist in and they got me in for an ultrasound where they found a 13cm endometrioma. I was going to need emergency surgery, multiple antibiotics and lots of painkillers (which by the way hardly stopped the pain). I was peeing constantly which was very painful, not only the act of doing it but having to constantly get up from the cot I was laying on. I spent the night on an emergency room cot. The next day they got me into a real bed for a short amount of time, until they got me a room of my own that also had a cot. I was in extreme pain and that cot definitely didn’t help the matter. The following day I had my surgery in the evening. They drained the endometrioma and removed a fallopian tube but they could not finish the surgery because the infection was too bad. The gynaecologist that took care of me was phenomenal. I don’t know how I would have got through it without her. Between the first surgery and the second surgery I was on several antibiotics and they put me on Lupron to try and shrink the endometrioma even more. The gynaecologist who took care of me at first was at the hospital for only a short time as she was covering a maternity leave and I was told another doctor would be doing my surgery. I was really upset about it but met with the new doctor. She performed my second surgery in July 2017, where she removed the other fallopian tube and an ovary and had to unstick part of the bowel and ureter. I was put on another round of Lupron and then later tried Visanne. Hormones do not react well for me. I have mental health problems and I find hormones make things worse. I become suicidal. By the end of that I swore I wouldn’t take hormones anymore.
What was your experience with treatment for endometriosis been? Lupron treatment over 4 months caused me to feel suicidal and did not affect pain. Visanne also affects moods and made me feel suicidal. Pelvic floor physiotherapy did not really change pain but I loved my physiotherapist. She referred me to my massage therapist. Massage therapy didn’t really change the pain but I enjoyed having my appointments because it was for me. Even though it was painful a lot because of the abdominal and pelvic massage, my therapist would finish with shoulders and neck to relax me. Acupuncture I tried a couple times. First time was very relaxing, second time made my pain worse so I stopped going. Vitex supplements I took for a long time. I couldn’t really tell if it was doing anything but I kept trying. Wait times are very long here. Getting into seeing a gynaecologist that specialises in endo took over a year. And then covid made it even worse.
How does endometriosis affect your day-to-day life? I have good days and bad days, but even on good days I have to monitor how much activity I do as not to cause flare-ups. I haven’t worked in nearly 4 years because I find it hard to plan ahead and if I’m in pain it feels impossible. I’ve lost friends because of my endo and them not being able to deal with a friend with a chronic illness. My marriage has suffered and almost gone to the brink of collapse but thankfully my husband has stuck by me through it all.
How does endometriosis affect your emotional well-being? I have bipolar disorder and have suffered from anxiety a large part of my life. After my experience close to death I now suffer from PTSD. I wake up in the middle of the night and have panic attacks. I have health anxiety and it causes me to constantly think I am dying and it sends me into panic. I frequently get depressed and feel hopeless.
How has endometriosis shaped turning points in your life up until now and looking toward the future? When I look back on my life I feel like endometriosis has held me back from many things.
How have you found hope and support in your endometriosis journey? I found an endometriosis support group not too long after my second surgery. The girls of Undo Endo helped me so much understand the disease and feel less alone in the world.
What do you think healthcare for endometriosis in Canada should look like? Doctors who actually know what endometriosis is and who listen to their patients. We are the ones who live with this disease. Wait times need to be shorter and access to gynocologists needs to be easier.
What do you think it is important for people to know about the experience of having endometriosis in Canada? It is an invisible illness but it really impacts and in many ways controls your life. I’ve had to learn this is my new normal. I’ve gone through basically a mourning period coming to terms with living with a chronic illness.