What are your endometriosis symptoms like? I had cycle-related pain in my right abdominal area for decades from my mid-twenties on, that stopped after menopause. I had sharp monthly pain between ovulation and my next period. It started after I had a D&C for breakthrough bleeding while on the pill, in the 1970s. I always thought it might be endometriosis and wondered if the D&C had caused some endometrial tissue to be displaced and migrate to a nearby site. Bleeding while on the pill may have been related to the relatively high strength of the pill in the 1970’s. Simply going off the pill was never suggested. I decided to do that on my own shortly after the D&C which did not solve the bleeding issue.

What was your journey to diagnosis like? My doctor was oblivious to any cycle-related suggestions. He seemed uncomfortable with « woman issues » in general. He sent me for several tests for possible intestinal problems that did not match the symptoms. The tests were negative (no intestinal problems). I was never formally diagnosed with endometriosis but that’s likely what it was. The symptoms disappeared completely after menopause.

What was your experience with treatment for endometriosis been? I received none. I took off-the-shelf pain killers.

How does endometriosis affect your day-to-day life? I didn’t want that area of my body touched for half of each month. It affected which side I slept on. Certain clothes were too uncomfortable. I always made sure to buy underpants and pants that had high bands above the painful area. I couldn’t stand a band being in the area where the pain was. I could tell when trying clothes on that they wouldn’t work even if I was pain-free at the time.

How does endometriosis affect your emotional well-being? I had to adjust sleep positions. I didn’t want to be touched on my right pelvic side. It was something I had to work around constantly. My partner didn’t understand and had no empathy. I probably tried mentioning it a few times but he didn’t get it or take it seriously. I’m sure he forgot all about it.

How has endometriosis shaped turning points in your life up until now and looking toward the future? In terms of my intimate relationship, it didn’t help matters. My partner had a background of sexual abuse and gender confusion, unacknowledged for many years. There was no room for me to have a physical issue. Any issues I had couldn’t possibly be real. They were my presumed psychological problems that I was inflicting on him, because he couldn’t possibly have any problems. Over time, it all became moot. He became seriously mentally ill and was repeatedly hospitalized. Ultimately, our marriage broke down.

How have you found hope and support in your endometriosis journey? None.

What do you think healthcare for endometriosis in Canada should look like? Step 1. Get it recognized as a real thing. I expect that means addressing awareness, publicity, and education. Step 2: Since I never got to step 1, I don’t know. Clearly it needs more research.

What do you think it is important for people to know about the experience of having endometriosis in Canada? It’s hidden, It’s unacknowledged. It’s nothing.