What are your endometriosis symptoms like?
I have had debilitating cramps since I was a teen. But in my early 20s I developed sharp pain in my left pelvis. It is ALWAYS there. Sometimes the onset of it getting sharper brings me to my knees or a fetal position. I’ve been trying to get this sharp, persistent, and sometimes mind numbing pain properly assessed for 10 years now. In my late 20s, and now at 30, the pain can turn into an internal tearing sensation. It has prevented me from getting to the bathroom on time, going to work or family events, and from doing basic things like cleaning or running errands.
What was your journey to diagnosis like?
I got my period when I was eight. This started my digestive issues. At age 9 my mom took me to the ER with severe abdominal pain and worry of appendicitis. I vomited in the car on the way there and was sick the next day. At age 11 I experienced ovulation pain for the first time; 19 years later, I still remember how God awful the pain was. My doctor diagnosed me with ovulation pain and likely IBS. My parents had already tried eliminating dairy or wheat to test for food allergies. We went with IBS for my teen years and the promise I’d probably experience ovulation pain again at some point. My cramping and pains were on and off for my teen years but around 22, I started getting persistent pelvic pain. One night got so bad I went to the ER. After a 7 hour wait, I was told it was likely my hip flexor. This was a day before my university finals. A year later I go back to the ER, and after a blood test that had a high white blood cell count I was given a mixed shot of gravol and morphine then sent home.
At 26 I went to a medical centre in desperation knowing how long the ER could be. I had to drive myself there then the doctor made me to go ER via a ride from my boyfriend. I waited at the ER for 8 hours to have a nurse address me and what he called “my tummy issues” by defining dysmenoreah for me. He told me they could also give me a pill they called a PINK LADY. They didn’t even tell me what kind of medicine they were offering me. It had to have a sexist euphemism. By the time I was 28 I gave up. But my symptoms interfered too much with work. I couldn’t find a GP so I asked a medical centre doctor for a gynecologist referral. He told me to join a gym or get more exercise.
By this point I had a mental break down and lost my job due to not having authoritative medical support for my missed work. I was fired immediately before the pandemic and lockdowns and have yet to find steady work or qualify for government support. I did however find an amazing GP in that time. She has assessed me in every way she can and did the work to find me a gynecologist. She was educated enough to diagnose me with endo lesions via a physical pelvic and rectal exam and rule out other illnesses or diseases. I am finally now on the wait list for laparoscopic surgery. But not before I was forced to stop a hormone treatment in March 2021. This was due to it causing what was likely a large ovarian cyst bursting. The cyst bursting caused my body to go into instant shock from pain: upon which I projectile vomited, ran an instant fever, and became dizzy. I was then physically ill with a pelvic infection. I think my lap is long overdue.
What has your experience with treatment for endometriosis been?
In January 2021 I started taking vissane. My gynecologist told me to try it before surgery and promised the allure of no more bleeding or menstruation. (Brand name without insurance is around $400/3 months.). Within my first period, no real changes, my second period was annoying spotting. The third month in, it didn’t come when expected but I got what I thought was my ovulation pain. I keeled over and lay for about 10 minutes. I struggled down my stairs with a tearing sensation in my left pelvis. I got down and bent over to get my hot water bottle when I felt a pop like a large bubble burst in my pelvis. It literally floored me. I could not hold myself up. I stripped off my clothes because it felt like my sweat was boiling while this pain tore me up. My boyfriend said my skin felt ice cold to his touch at this time. I dizzily vomited a very very painful puke on the spot and had an instant diarrhea sensation. Once my bowels were emptied my mind came to and I felt weaker than I have ever felt. I immediately followed up with my gyno who instructed me to stop taking vissane. I requested the laparoscopic surgery and he agreed. The next day my ear swelled huge and became red so I called my doctor. Turns out, whatever did burst that one night caused a pelvic infection. My following period was the most painful and heaviest of my 22 years of having a period.
How has endometriosis shaped turning points in your life up until now and looking toward the future?
Having a huge question mark on your fertility, while being someone who wants kids, while also experiencing typical pregnancy symptoms, is an absolutely heartbreaking and confusing experience
How have you found hope and support in your endometriosis journey? My mom and my boyfriend have been my biggest motivators for getting this diagnosed. They tell me things like “keep fighting,” “keep speaking up and advocating for yourself, this isn’t right.” In other words, they validate my pain.
What do you think healthcare for endometriosis in Canada should look like?
Hormones should never be the first plan of action. Why are we treating something that we’re not taking the “GOLD STANDARD” approach to? I think laparoscopic surgeries should be more prevalent and accessible
What do you think it is important for people to know about the experience of having endometriosis in Canada?
It’s being torn between questioning this free service so many around the world look to as world class, and between not giving medical professionals a pass or an excuse to provide subpar or sexist care.