I’ve been an avid reader my entire life, and one of my favourite books as a kid was Judy Blume’s Are You There God? It’s Me, Margaret. In it, the characters celebrated, and even bragged about, getting their first period. One even lied because she thought it would make her seem cooler. It set some expectations in my tween mind; a mixture of excitement and nervousness. But nothing could’ve prepared me for the nightmare I was about to endure thanks to a disorder known as endometriosis.
The start of a decades-long journey
Although I wasn’t diagnosed with endometriosis until I was 25, the symptoms started 16 years earlier — only a couple of months after my first period. I had menorrhagia, or abnormally heavy bleeding, at nine years of age. I didn’t even have a chance to get used to the changes happening with my body before landing in the ER. It was Halloween, my favourite day of the year, and I had to miss the class costume party. The doctors said that periods lasting more than a week — or in this case, a month — were likely going to be “my normal,” and they could prescribe something to get it back within a “normal” range. I had no clue that the medication they started me on that day was actually birth control, hoping that it would set me back on a regular cycle. It only helped for a short time.
At 14, I had a week-long stay in the hospital with severe pain on the left side of my pelvic area. The doctors thought it might be appendicitis with the pain radiating to my left side, but tests ruled that out. They diagnosed me with irritable bowel syndrome, or IBS, and gave me medication for my stomach.
Throughout high school and university, my trips to the ER increased. Most of the time, they sent me home and told me it was PMS. I even had nurses who told me, “Suck it up. Pain is part of being a woman.” I knew something was wrong with my body and continued on my quest to figure out how to find the source of my pain. I was missing classes not only because of extreme cramping and heavy flow, but also because sitting on a chair was agonizing. At night, I couldn’t sleep because the pain would wake me up. Plus, I had severe bloating after almost every meal.
At 24, during a trip to the ER where I expected another dismissal with a lecture on how I just had to deal with the pain, I insisted on further testing besides the usual blood work. The doctor performed an ultrasound that revealed a large cyst on my left ovary, and a small cyst on my right ovary. They recommended a follow-up with my physician and a referral to a surgeon.
Let the surgeries begin
At 25, I had my first laparoscopic surgery to remove the cysts on my ovaries, and that’s when they discovered I had endometriosis, where tissue that lines the inside of the uterus grows outside of the uterus. It was between Stages 3 and 4 in severity. My ovarian cysts were, in fact, endometriomas. The surgeon removed what she could and “cleaned up” other adhesions that had caused scar tissue on my fallopian tubes and my bowel, which explained why I was having digestive issues on top of it all. She told me that I should have some relief, but endometriosis was something that I had to live with.
In my follow-up six months later, I was already starting to experience severe pain again. I couldn’t believe her response. She suggested “getting pregnant” would give me some temporary relief. I’d already had the conversation with her that I never wanted children. One of the first conversations I had with my partner was about kids, and both of us agreed that it was something neither of us wanted. When I asked if a hysterectomy was an option, she was very condescending and told me that I couldn’t possibly want that for myself. She insisted that I’d probably change my mind on kids. Needless to say, I never saw that specialist again.
Luckily, my physician was very supportive and worked with me to find the right specialist. She agreed that a hysterectomy would give me the most relief from the near-constant pain I was experiencing.
I endured close to a decade of pain after that first surgery and at least a couple of emergency room visits each year. I couldn’t sit for more than 30 minutes at a time at work, and I’d collapse at the end of the day, exhausted from working through the pain. Making, and keeping, plans with friends was nearly impossible. On a road trip to the East Coast with my partner, we had to pull over at the side of the road several times so I could curl up in a ball until the pain subsided.
During one ER visit, a nurse refused to help me get to a bathroom, although I was vomiting and couldn’t walk because of the pain. She begrudgingly apologized after the tests came back. They found a new endometrioma on my left ovary, larger than the one removed in the first surgery. To top it all off, it was twisted, leading to the most intense pain I’d ever felt in my life.
A specialist who listens? What a novel concept
In June 2010, my physician referred me to a new specialist, and he listened to all my concerns. He wasn’t keen about going straight to a hysterectomy, but didn’t completely shut the idea down. He scheduled my second laparoscopic surgery and performed a salpingo-oophorectomy, removing both my damaged left ovary and fallopian tube. My endometriosis was now Level 4, so he also tried to remove the adhesions which had essentially pasted my uterus to my tailbone and tangled around my bowel. It was even on the right side of my pelvis, which explained the added hip pain. Less than six months later, the pain was back with a vengeance. During my follow-up appointment, the specialist scheduled a total hysterectomy for August 2011.
I’ll never forget the day following that final surgery. It was at a teaching hospital and during morning rounds, my specialist stopped by along with his all-female team of residents. They remarked how they’d never seen anything as bad as what my insides looked like, and told me that this was, without a doubt, the best solution for me. The specialist agreed with them and said that the pain relief would be almost instantaneous. He was right. They sent me home with anti-inflammatories, and I didn’t have to reach for any type of painkiller. Having a total hysterectomy at 35 made me instantly menopausal. With a combination of prescription medication and natural remedies, I experienced little to no side effects like hot flashes.
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A hysterectomy greatly improved my life, but it’s not a cure for endometriosis
I’ve never had a follow-up laparotomy, but endometriosis can continue to spread even after the uterus is gone. I haven’t had the pelvic pain to warrant further exploration. I also have two lasting conditions: fibromyalgia and anxiety. Then there are the recurring digestive issues sometimes triggered by anxiety, but also from the endometriosis cells that travelled through my body. It’s been a journey to learn how to cope with those conditions so I can live as full a life as possible. But I’d take them any day versus the debilitating pain I’d experienced for so long.
In the 10 years since my life-changing surgery, I’ve been able to look back at my experience with the medical system in Toronto through a clearer lens. Reproductive health issues aren’t taken seriously. I faced condescension, dismissal and disregard from medical professionals for nearly three decades. I don’t like to think about what my life would be like if I hadn’t advocated so fiercely for myself.
And then there were people in my life who, at the time, who tried to force their opinions and views on me. More than one person told me that wanting a hysterectomy was “selfish.” As a woman, I should want to have children and go to any lengths to make that happen.
On the bright side, the experience forced me to take time off and put myself first. That put everything into perspective. I learned to focus on the things I love and it completely changed my career path. I was hopeful and started pursuing the dreams I’d put aside for so long.
Celebrating the 10th anniversary of my life-changing surgery
While it hasn’t been all sunshine and rainbows over the past decade, I have zero regrets. My quality of life has improved considerably. I am far more adventurous and no longer scared to travel. In 2012, I fulfilled a dream of going to San Diego Comic-Con for the first time. I can sit through a movie or a concert without having to leave partway through. I crossed a suspension bridge and took a gondola to the top of a mountain. I was even able to sit through an entire conversation with Are You There God? It’s Me, Margaret author Judy Blume at my local library!
After feeling like I was in a holding pattern, I was finally able to start living my life in my mid-30s… thanks to a hysterectomy.
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