What are your endometriosis symptoms like? I have to be careful how I exercise or play with my kids because it can cause painful flare ups for a couple of days afterwards. The pressure and ache throbs inside my hips and radiats down my thighs making it difficult to focus and do my daily tasks. Sometimes I also get symptoms of a UTI to go along with it. My toddler thinks it’s great to watch movies all day, but there’s definitely a fair bit of “mom-guilt” that comes with only being able to do the minimum some days.
What was your journey to diagnosis like? I’ve had painful periods since the very first one! My mom and both grandmothers had a history of the same thing, and so I was led to believe that this was just my lot in life. Since women were less fortunate than others. As I got older, I started seeking medical treatment but was met with the same answer my mom and grandmothers gave: “some women have painful periods” and was prescribed birth control which didn’t help. After I got married I started having pain with sex (instant and lingering) but again was told it was nothing and to take oral contraception. It never helped, no matter which pill they tried and I eventually started having pain between periods and it eventually got so bad that I was having more painful days than not. I saw countless doctors. No one knew how to help me. Some were sympathetic, some all but rolled their eyes at me. A couple actually told me that if I focus on it too much it becomes more of a problem and to get a hobby and another referred me to a psychiatrist saying “the pain is in your head” (yes, that’s a quote). One night I woke suddenly in excruciating pain. I was literally writhing. Could barely talk. The ER doctor thought it was a kidney stone blocking the ureter but when the CT came back, there was no kidney stone, but it showed a bunch of free fluid in the abdomen and two 7cm hemorrhagic cysts (one on each ovary). They suspected there was a 3rd that ruptured. I finally got my referral to a gynaecologist. It took a few months to get an appointment, but when I got in, he read my file, took my history and diagnosed me on the spot in the first 10min. He said it was a textbook case and scheduled me for surgery to confirm the diagnosis. He confirmed I have stage 2 endometriosis. I felt so vindicated!
What was your experience with treatment for endometriosis been? I’ve had 5 surgeries for it. 4 laparoscopic cautery – which didn’t help for more than a couple months. And 1 excision – after which I finally got pregnant (after 2.5yrs of trying) and had lasting relief for a time after the pregnancy. The treatment for endometriosis is chemical suppression of the menstrual cycle which brings with it all the symptoms of menopause (not surprisingly). The drugs are expensive (Orilissa is $200/mo) and it’s better than nothing, but it’s definitely no cure. I’m still taking Gabapentin for nerve pain and regularly dosing with Tylenol. Because of COVID closures, I can’t get the surgery I know would help because this is considered an elective procedure and the ORs are already backed up for months with patients who have been cancelled. But honestly, even without COVID, it’s not considered that important. One of my surgeries was cancelled and rescheduled more than once because the anaesthesiologist wanted to go on holidays (I don’t think they were supposed to disclose that info though!).
How does endometriosis affect your emotional well-being? During a flare up sleep is difficult. So my doctor prescribed something to help me sleep on those nights. But the grogginess lasts into the next day and makes it hard to focus, but then again so does the sleep deprivation.
What do you think healthcare for endometriosis in Canada should look like? This condition affects at least 1 in 10 women. That’s not considered rare. Perhaps this is already being done, but there should be more education on the symptoms for GP’s. Not that they should necessarily be intricately familiar with treating it, but that it should be on the list of possible diagnosis for a woman presenting with persistent pelvic pain and a referral should be sent to gynaecology. It seems ridiculous to me that with a disease affecting at least 10% of women (probably more) it takes so long to even get sent to the right professionals, let alone a diagnosis. An average of 10 years to diagnose should be unacceptable! Especially when treatment is alot more effective if addressed early!