What are your endometriosis symptoms like?
Back pain and abdominal cramping and nausea. Cramping so bad, I would lay down with 2 heating pads applied front and back. Sleeping, I would curl up in a fetal position.
What was your journey to diagnosis like?
Years ago, in my early 20’s, I went to my family doctor because I thought my menstrual pain was more severe than it ought to be. The male doctor dismissed my concern and said menstrual pain is normal and I would have to put up with it. I tried again when in college a few years later. He reluctantly gave me a prescription for Belladonna. I felt that my pain was trivialized.
It controlled the pain, but It made me dizzy and I slept for 24 hours. I heard that birth control pills helped with period pain so I was able to get a prescription and it dramatically helped with the pain. It was still there but now manageable. Fast forward to my late 30’s and I wanted to get pregnant but couldn’t. Went to a doctor, he took my history of painful periods but no advice or follow up, except to keep trying. Went to another doctor and right away he made an appointment with a specialist. I had 2 procedures, one to diagnose endometriosis and the 2nd to remove endometrial tissue from my organs, uterus, ovaries and Fallopian tubes. It was beginning stage 4 endometriosis. I successfully got pregnant, but so many health people along the way were too quick to dismiss the pain and say it was just a period.
What has your experience with treatment for endometriosis been?
I had 2 laparoscopic procedures. The first one was to diagnose endometriosis and involved making a tiny incision above the navel. The surgeon inflated the abdomen area with a gas in order to view, diagnose and see the extent of endometrial tissue damage. The second laparoscopy involved making 3 incisions, one above the navel and one on each side of the abdomen. One incision was for the viewing scope and the other incisions were to remove the endometrial tissue. And gas was again used to cause the abdomen to expand. Post surgery, the gas in my abdomen hurt like hell leaving my body. It worked really well and 4 months later I was pregnant. However the menstrual pain did come back but no where near the level of pain before treatment.
How does endometriosis affect your day-to-day life?
Too many people, even health professionals, don’t understand the level of pain that you experience with endometriosis and are just not sympathetic. It’s just period pain to them, it’s normal and some think you are being a baby, and some even think you are faking it. Getting a diagnosis helps people to understand that’s it not just a period and getting the right pain meds means managing the pain.
What do you think healthcare for endometriosis in Canada should look like?
Health professionals who are educated in endometriosis and courses of management. Who take the pain seriously and take the patient seriously and not think of it as just a period and pain is normal, so suck it up.
What do you think it is important for people to know about the experience of having endometriosis in Canada?
It’s not just a period and the level of pain is not normal. It affects our lives and the lives of those around us.