A tumour. The size of a grapefruit. In my uterus.
After leaving the emergency room that fateful fall day, I spent hours staring at the ultrasound report cataloging the uterine fibroids that could explain why I was feeling like shit nearly all of the time. Everything hurt, fatigue was ever-present, my pelvic pain was out of control – what the hell was happening?
I read that fibroids were benign nearly all of the time (one in 1,000 are not). And while that kind of made me feel better for a bit, it also made me question how something could grow and grow and grow to the point that it sidelined me from my once energetic daily life. I actually went so far as to request imaging from an MRI of my spine that had been previously done, and I spotted a large, solid white circle “thing” sitting just by the sacral spine. Hello, fibroid that was overlooked.
As I waited for my appointment at the hospital’s women’s clinic, I tried to inform myself about my options.
Finding the Right Doctor
My sister joined me at my first, and only, appointment at the women’s clinic in the fall of 2018. I was thoroughly assessed by a resident who seemed more nervous than we were, which then ratcheted up our nerves. The doctor rattled off a bunch of medical terms and mentioned doing an endometrial biopsy, which sounded terrifying, and left to confer with the chief resident.
(Pro tip: Doctors, don’t leave your computer screens unlocked because the patients are obviously going to look and see that you typed the word “cancer” followed by a question mark.)
Both doctors came back to the exam room and gave off a perceptible scent of nervousness, yet the chief resident overrode any of the thoughtfulness my examining doctor had provided by over-compensating with an unsettling harshness. She said that the endometrial biopsy wasn’t necessary and that the tumour “probably” wasn’t malignant (stats would probably help quantify what the heck “probably” means, btw). She pushed me towards a medication because surgery wouldn’t be an option to even discuss for at least a year since the supervisory surgeon was fully booked for the foreseeable future. So, that was that. I was handed a prescription as they walked out of the room abruptly.
For doctors who deal with pregnancies and babies and highly stressful times in their patients’ lives, I was left feeling dumbfounded and alone. I wanted to find someone else – and so I did.
Universal healthcare and I have a kind of love-hate relationship. It’s free – yay! – but you might be waiting upwards of a year before you actually see a specialist. Other people I knew who were dealing with gynaecology specialists warned of experiencing massive wait times for a first appointment – and that’s before taking into account the equally long wait times if you get to book surgery.
So, if you’re looking at a year to see a sought-after doctor, then do pharmaceutical treatment for six months as their first line of defense – you’re nearly at one and a half years before you may be speaking about surgery. Then, if they have a year waitlist for surgery, you’re about two to two and a half years out from surgical intervention.
I was exceptionally lucky to score a fairly quick appointment with a young but experienced doctor with expertise in MIGS (minimally invasive gynaecologic surgery). He was located across the traffic-riddled city – but worth the drive. My advice to anyone in the same situation: do your research about who you want to see (and their skill sets), get your referral, and call their receptionist to try and scoop any cancellations.
While I waited for the date of my first appointment, I started the prescription for Fibristal (Ella, EllaOne, Esmya – a.k.a. ulipristal acetate). This medication is a selective progesterone receptor modulator, which essentially puts you into menopause and may shrink fibroids somewhat. I had researched the medication before starting it and read some scary warnings, but this was the only option I had been given – and at $1,200 for a three-month run, I began.
Medical Menopause Mayhem
Fast forward a couple of weeks to when I’m in the middle of Whole Foods having an emotional meltdown at the hot bar. I had been experiencing intense hot flashes and dizziness, and my mood was…concerning. Rage blackouts and road rage became a normal part of life.
I felt like I was losing my personality. My temperament and behaviour were becoming unpredictable. One day, an unsuspecting grocery store shopper got an earful from me in the parking lot for being too lazy to return their cart to the designated area. I was getting irritated faster than Vin Diesel with a NOS boost. I was breaking out into sweats anywhere and anytime thanks to the hot flashes.
To say I was hell on wheels is putting it mildly. Just ask any of my loved ones. They were surely pushed to their limits watching me fall apart (or at the receiving end of my verbal lashes – and occasionally thrown objects).
But, luckily, I started seeing my new gynaecology surgeon and he kept tabs on my liver function, which began showing month-over-month changes (the potentially liver damaging kind). Two months later, I was taken off the medication, but it took nearly a year after that to even start feeling like myself again.
Now, Gearing Up for Surgery
By winter 2018, I had deteriorated to the point where I could barely stand up straight. I looked about eight months pregnant and had gone up five pants sizes (startling for someone who had a previously predictable body type). I actually couldn’t even fit into pants with zippers or buttons by this point, so I relied on a trusty rotation of yoga pants and jumpsuits.
Given all that, when I captured an unexpected surgical date at the end of February 2019, I thanked my lucky stars. I’d venture a guess that it is miraculous to go from diagnosis to cutting within six months in the Canadian universal healthcare system (save for, obviously, literal life-threatening issues). So, I want to be careful to articulate that my story is quite an exception and not the rule according to what I hear from other women in support groups and forums.
With my surgery date in my calendar, I took the next few months to prep for the procedure and the recovery afterwards. I put myself on a (do-able) fitness, acupuncture, and meditation regimen and worked to change my diet. These were protocols articulated by some of the top gynaecology surgeons, and this overhaul would change my life forever.
Curious what life was like before the thermo-nuclear meltdowns and hot flashes? Read Part 1 of my diagnosis journey for life before these consequences.