What are your endometriosis symptoms like? My symptoms began after my first few periods. I remember describing my cramps to my doctor as what I thought contractions would feel like. She asked what that meant and I said “ debilitating. They stop my in my tracks, I drop to the floor, I can’t get out of bed or off the toilet. I feel light headed, nauseous and dizzy.”
What was your journey to diagnosis like? I had my first period in 2001, just before school started. I was 12, starting 8th grade. I remember right away having bad cramps and being told that it was normal. I ended up getting very sick right after my 2nd period and the doctor said the pain I was experiencing was related to my appendix rupturing. By the time I hit grade 9 I was missing a full week every month due to the pain my cramps were causing. I went to my family doctor repeatedly and she told my mom that I was doing this for attention, acting out, needed more friends or a social life. I was put on birth control by grade 10. After going on birth control I experienced little to no symptoms until I was 24. I had been on a 3 month birth control for about 5 years at that time. I remember waking up one night and being in the worst pain of my life. I couldn’t move, couldn’t breathe, couldn’t cry out for help. I laid there not knowing what to do. Eventually it faded and I fell back asleep. It happened the next night and I was taken to the hospital. I was left in the ER for 7 hours without a doctor or nurse checking on me despite there being only 2 other patients. I was told to come 5 days later for an ultrasound to see what was going on. I did, and it showed nothing. This went on for a few years until one day an ER doctor asked me to answer her 3 simple questions, which I did. She asked me if I had ever heard of PCOS, diverticulitis or endometriosis. I had never heard of any of those. She said based on my age she was ruling out diverticulitis, but wanted me to come back at 7 am for a number of tests she wanted to run. I arrived back at the hospital, checked in for 7 am to begin the tests, only to find out the new ER doctor on call had cancelled all but one of my tests because he didn’t feel I had anything worth looking for. I sat in the ER waiting for my results when a nurse walked by asking why I was still sitting there! My results has been ready for over 2 hours while he sat and did nothing. I was the only patient in the ER during that time. He came in and said I had a kidney infection. Wrote me a prescription and told me to leave. I pressed for more answers about PCOS and Endometriosis. He sat on the bed across from me and said “Do you know how ovulation works? You don’t have PCOS or Endometriosis. All women experience a small cyst right before their period and it ruptures. Some women don’t feel pain, but most women who do take an Advil and move on with their day. Stop trying to exaggerate your symptoms for pills.” I left the hospital that day with a prescription for a kidney infection. 5 years later still no kidney infection. I began to google both PCOS and endometriosis and began realizing that I think I have these conditions. I asked my family doctor to be referred to someone who knew about these conditions. I was referred to a fertility specialist in 2017. He was the worst doctor I have ever experienced. My first appointment he told me the cyst I had on my ovary wasn’t a cyst but cancer and we wanted to start treatment for it immediately. Then I went back for a follow up on my treatment plan and he had zero idea about his cancer comment. He pushed Lupron, which is a cancer drug and when I refused he told me he would see me in 6 months to discuss how it worked. I went back in May of 2018 and I demanded I have surgery to find out what was going on. He told me based on my symptoms I would not have endometriosis but he was “indulge my fantasy” and see what’s going on. He recommended me to a new doctor. I went for an appointment a few weeks later and he wanted me in the next day for surgery based on my symptoms. I underwent a diagnostic laparoscopy in 2018. When I woke up less then an hour after my surgery time began I knew something was wrong. He came into my recovery room and told my mom and husband that he had never seen such bad endometriosis. It looked like someone has opened me up and poured super glue all over my pelvic region and let it harden. He said as a doctor and surgeon he did not feel he had the skills to remove the endometriosis and would be advising the recommending doctor to send a referral to someone else. I was diagnosed with Stage 4 endometriosis. My whole entire pelvis region is fused together, and I was told I will lose function of my kidneys in a few years. The fertility doctor refused to send me to someone else saying “your case is too far gone for any doctor in this province.” I went back to one of the previous physicians. He recommended 4 doctor and told me to do my research on them. I was lucky enough to have an Aunt who was a nurse and worked for one of these doctors. The physician I ended up with has been the best doctor I could have ever expected. I live almost 3 hours from the hospital and drive every few months to see her. She has been so accepting, listened to me, held my hand when I cried and explained with confidence how she would treat my endometriosis. It took me almost 18 years to be diagnosed with this horrible disease, and because of it I will loose function of my kidneys, and will most likely lose part of my sigmoid colon and end up with a colostomy bag.
What has your experience with treatment for endometriosis been? I was told birth control would help my symptoms. I found out that it was basically a mask for everything. I was recommended Lupron to reduce my endo lesions in hopes my surgery would be more successful. Incase you didn’t know, Lupron is given to men in final stages of prostate cancer and women who have breast cancer. I turned it down and took Visanne for 9 months. I experienced little endometriosis pain but the side effect from this drug were horrible: bone pain, constant fatigue and migraines.
How does endometriosis affect your day-to-day life? I have missed out on so much in my life. Friend’s weddings, work, travel. I have to pull over on the side of the road sometimes due to the pain and I don’t want to pass out.
How does endometriosis affect your emotional well-being? I have extreme anxiety when I go to the doctors because of how terribly I’ve been treated. I stayed single for 7 years because I couldn’t function in a relationship.
How has endometriosis shaped turning points in your life up until now and looking toward the future? I put off getting a higher education because I had no idea how my pain would be. I was told by a fertility doctor (who was the worst doctor I’ve ever dealt with) that I would never have kids and to stop going to the clinic.
How have you found hope and support in your endometriosis journey? Some of my doctors are the only reason I’m able to say I have endometriosis and have such an amazing plan. When my husband and I started dating, he ended up doing his own research about endometriosis and brought it up within 1 month of us dating. He even came to my diagnostic laparoscopy I had done 6 weeks after we started dating.
What do you think healthcare for endometriosis in Canada should look like? I think that the signs and symptoms of endometriosis, PCOS and adenomyosis should be taught in high school more openly. I think doctors shouldn’t push women away and give them Band-Aids for years to shut them up.