What are your endometriosis symptoms like? One minute everything is fine. The next minute pain strikes so hard I lose my vision. Nausea sets in. I am doubled over in pain and don’t know if I can make it home safely. My internal organ functions are compromised are on a cycle that is independent of anything within my control. The disease grows through scars from abdominal surgeries and sets off sudden rapidly spreading infections, requiring again more surgeries. Hormonal therapies bring on side effects that outweigh the benefits. And the cycle of surgery, healing, living life to the fullest, and having it taken away again repeats every few years.
What was your journey to diagnosis like? I remember passing out on the bathroom floor as a teenager on my way to get pain killers for cramps. At 29, I had, unknown to me, endometriosis growing out of my C-section scar. I had a minor surgery by a gynecologist, a pathology report confirming it as endometriosis tissue, but no diagnosis or management of the disease. 2 years later I had secondary infertility issues that got me into a fertility clinic where a chocolate cyst was identified by ultrasound, and I was diagnosed with stage 4 endometriosis.
What has your experience with treatment for endometriosis been? Hormonal therapies have brought on side effects that outweighed any benefits. A hysterectomy provided me with 2 years of full and high quality of life, before symptoms returned. I had a 4 hour laparoscopic surgery completed 6 weeks ago. After a total now of 6 abdominal surgeries, I am reaching the limits of this form of treatment and I don’t have many good, affordable, next options. I had noticeable improvements with acupuncture every 2 days, but this was not affordable long term. I have tried diet changes, meditation and yoga to reduce stress and pain, exercise, all with varying results. One day it seems to help, the next day it doesn’t.
How does endometriosis affect your emotional well-being? It is hard to maintain intimate relationships as what I bring on a good day will be very different from what I bring on the bad days.
How have you found hope and support in your endometriosis journey? I have a group of local women with stage 4 endometriosis that I connect with and share experiences with so that I don’t feel crazy and alone with this invisible disease. I am grateful to have sufficient sick leave and long term disability benefits with my employer. This disease has pushed me to reach out more for support and connect with others because I can’t do it alone.
What do you think healthcare for endometriosis in Canada should look like? Early diagnosis and continual management of the disease from the point of diagnosis. Hormonal therapies need large scale randomized controlled trials instead of the current approach – trial and error with your obstetrician-gynecologist. Because of the lack of funded treatment options in our health care system, pelvic floor physiotherapy, acupuncture, nutritionist, and other areas with documented benefits should be available for free, as alternatives to surgeries.