What are your endometriosis symptoms like? When I was 13 (the year I my period started), I was at school in the 8th grade. I started experiencing cramps during my period. It was unrelenting pelvic/abdominal cramps. The worst pain I had ever felt, and no pain had ever felt somewhat similar. I left school early and was convinced I was going home to die. This type of pain, I thought, definitely meant I was going to die. Only to find out, this would be a monthly occurrence for the next 20 years.
What was your journey to diagnosis like? I went to my family doctor multiple times growing up about my painful periods and was told that it was a normal part of being a woman. I went to a gynaecologist at age 20 due to painful sex, and I was told this was normal. I had routine blood work done on my period, which showed that I was anaemic. My family doctor was convinced this had nothing to do with my period. I finally got diagnosed with endometriosis 20 years after dealing with excruciating periods because I couldn’t get pregnant and went to a fertility clinic. I have huge endometriomas on both of my ovaries.
What has your experience with treatment for endometriosis been? I’ve only ever been treated with pain meds and muscle relaxants until recently (I still have pain while on meds and when it nears the time for another dose and it starts to wear off can be excruciating). No one ever cared about my pain growing up. Doctors only paid attention when I couldn’t get pregnant. I’ve gone through IVF to try to get pregnant, which can cause endometriosis to flare because it grows off of estrogen. I’m now on Lupron to try to suppress my endometriosis (still waiting for results). Lupron scares me due to the risks of osteoporosis, hair loss, weight gain, joint pain, hot flashes etc. I’m waiting for a consult with a specialist, which has taken 4 months to get an appointment. I’m concerned about the wait time for surgery once I get consulted with.
How does endometriosis affect your day-to-day life? On my period, life stands still. Nothing else matters except my pain meds and my heating pad. I suffer through work, my husband makes me food, so I don’t have to leave my heating pad. I can’t exercise or do anything productive.
How does endometriosis affect your emotional well-being? I have been dealing with anxiety and depression due to my infertility. I feel betrayed by my doctors for ignoring me. This has taken a very hard toll on my marriage due to fertility treatments, miscarriage, waiting for a specialist while crying and feeling hopeless.
How has endometriosis shaped turning points in your life up until now and looking toward the future? I have done IVF that ended in a miscarriage. Our idea of multiple children or any at all seems like an unattainable dream. It’s heartbreaking to think that we may not have a family of our own. However, I’m also afraid that if we have a daughter, I may pass down endometriosis to her, which is also terrifying.
How have you found hope and support in your endometriosis journey? My husband is the only person to really take my pain seriously. He was the first person to ever suggest that I may have endometriosis. My endometriosis and struggles to conceive have shown me his unconditional love for me and his commitment to stand by my side no matter what.
What do you think healthcare for endometriosis in Canada should look like? Women should be taken seriously. It’s not normal for women to suffer, and doctors should investigate what is causing their pain, not dismiss it. There should be access to specialists, treatment, and surgery without extended wait times.
What do you think it is important for people to know about the experience of having endometriosis in Canada? It is important for people to know that this is a disease, and it can be debilitating.