I Couldn’t Get The Surgery I Needed In Canada. I Paid To Get It In The U.S. Instead
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I first started experiencing endometriosis-related symptoms when I got my period at 13. I had such heavy bleeding that my mom taught me how to layer pads in my underwear. Sometimes I’d layer up to four pads and still bleed through them. By 16, I was becoming anemic. My mom took me to the doctor, who told me I’d have to take B12 and iron for the rest of my life. He recommended hormonal birth control and told me periods were just “a women’s issue” that I’d have to deal with.
Birth control helped with the pain and heavy flow, but it also caused me a slew of mental health issues. At 22, I developed psychogenic non-epileptic seizures: I’d get a sensation down the back of my neck, my feet would start shaking and tremors would move up my body. At first, the seizures would last for about 10 minutes, and I was able to communicate and talk through them. But after two months, they lasted anywhere from 45 minutes to an hour. I felt like I was possessed. My body would stiffen and I’d start screaming, but I couldn’t control it. At the time, I was living in Dartmouth, N.S., for college. As a result of the seizures, I had to drop out of school and move back home to Guysborough, N.S., in 2012.
That same year, I came off the birth control pills. I still had seizures, but they slowed down a bit. It was only after I sat down with my mom one day, expressing everything that had been bothering me, that the seizures stopped completely. My doctors said the birth control had affected my ability to deal with stress, which often triggers pseudoseizures. I also have premenstrual dysphoric disorder (PMDD) and depression, both of which I believe were triggered by the pill.
I tried to stay off birth control for a year, but the painful periods came back, and I just couldn’t take it. After a year of suffering from stabbing pain, unrelenting nausea and a burning sensation in my uterus, I got back on the pill.
From 2013 to 2016, things were relatively good. In 2017, I was able to take a job with the Nova Scotia government in Halifax. Unfortunately, this relief wouldn’t last long.
By the time I was 30, my symptoms worsened. The pill wasn’t helping anymore. Then came the food sensitivities and physical illness. I was throwing up multiple times a week. I couldn’t wear jeans or have anything pressed up against my abdomen. I couldn’t do things I love, like sing or play bagpipes. I ended up leaving work. I was diagnosed with Irritable Bowel Syndrome (IBS), but when I brought up the possibility of endometriosis, the doctor at the time told me my issues could be rectified through diet.
In 2021, I moved back home to Guysborough for familial support. I was able to see my old family doctor, who referred me to a gynecologist in Antigonish, N.S. I asked if she could expedite the referral because I couldn’t function. I wanted to get back to work; my short-term disability was going to run out soon. “You’re going to have to wait your turn like everyone else,” she responded. At one point, she told me I was mentally unstable and that I should see a psychologist. I wasn’t mentally unstable—I was frustrated because I wasn’t getting anywhere.
I was in excruciating pain for close to two months. It felt like someone was jabbing a hot iron into me daily. In December 2021, my mom couldn’t watch me suffer anymore. She pushed me to go to the emergency room at our small, rural hospital. The attending doctor told me there was nothing she could do—this wasn’t really an emergency because I wasn’t bleeding out, and my blood tests and urine sample results were fine. I told her the pain was so bad that it felt like the only way to get relief was to take my life—and I didn’t want to do that.
I felt like nobody was listening to me. I walked out of that hospital sobbing. When I got home, I called the gynecologist's office in Antigonish. They were really helpful. Within a week, I had an appointment. The gynecologist believed me when I said I was in pain. She was certain I had endometriosis based on my symptoms. So, within a couple of weeks, I was scheduled for surgery.
I got my first diagnostic laparoscopy on February 9, 2022. A small camera was inserted into my body, and they used a technique called ablation to burn the surface of the endometriosis. When I first opened my eyes after surgery, my gynecologist was sitting by my bed. “Was it endometriosis?” I asked her. “Oh yeah. It was endometriosis,” she said. I broke down crying. I went to so many doctors and was constantly told my results were normal. I missed out on so much school due to the pain; I couldn’t keep a job.
Unfortunately, the ablation only provided temporary relief. There are two techniques often used to treat endometriosis: ablation and excision. The latter is when a surgeon removes the disease at the root and excises it from the body. In Canada, there isn’t a consistent standard of operating for endometriosis. Not enough gynecologists are trained in excision and ablation—which can cause some damage to the healthy tissue around the lesions—is more commonly performed.
After my ablation, not only did all my symptoms return, but I also developed chronic nerve pain. I returned to work, but that lasted for about a year. I was left without pay for nearly two months and ended up on EI sick benefits for six months. I tried to work again, but I couldn’t manage. Disability wouldn’t cover me, either—I had three doctors write to them about my situation, but the assessors said that, based on my symptoms, they felt I could still work.
In the meantime, I was referred to an endometriosis clinic in Halifax. Unfortunately, I was given the runaround there, too. They discouraged me from having excision surgery each time I brought it up, and instead insisted on medication I knew would make me worse from prior experience. I felt dismissed, and I decided I didn’t want this to be the rest of my life. I needed to get help.
My next best option? Heading south for a paid procedure. In February 2024, I contacted Dr. Andrea Vidali, one of the world’s leading endometriosis surgeons, in New York. I had a consultation, asked how much it would cost and began my fundraising journey. Being from a small rural area, asking for money felt like a lot. On my GoFundMe page, I wrote that I was raising money for out-of-country endometriosis surgery. I shared that I was getting worse and that it was affecting my ability to live. I just said, plainly, that I needed help. I also organized raffles, made jewelry, did tarot readings and sold my car. A few ladies in the community got together and held fundraising yard sales. A church in a neighbouring town held a silent auction, and we did a family concert to raise some money. Despite feeling isolated my whole life, I ended up finding a community of people all around the world who wanted to support me.
In the meantime, the endometriosis clinic in Halifax was still pushing medication on me. I find that for doctors to listen to me, I have to show them their methods don’t work. So I agreed to try the drugs. I ended up having neurological tremors and crazy mood swings, and I felt extremely suicidal. My legs were buckling, and at one point, I nearly fell down the stairs. My dad insisted that I come off the meds. I reported all this back to the clinic, and only then did they offer me surgery. But at that point, I was almost at my fundraising goal for the U.S. procedure. I’d have to wait up to two years to get the surgery in Canada.
I had raised $21,000 by September 2024, which was the initial amount quoted to me for the hospital fee, surgery and some accommodations. When I called to book the appointment, I was told the hospital fee had gone up. I’d have to raise more money. I messaged Dr. Vidali about my predicament, and he kindly lowered his surgical fee so I could get to New York. About $28,000 later, I finally booked my appointment.
On January 17, 2025, I woke up from my surgery, and I had no pain. The surgeons had excised all of the endometriosis. All the nerve pain was gone. Since then, most of my bothersome symptoms have been resolved. I'm working full time again. I can actively contribute to my community and advocate for better access to women’s healthcare and research in the province. It’s been liberating.
Had I not gone to New York, my endometriosis would have worsened over time. It's not one of those things that gets better on its own, and the longer I left it in my body, the more havoc it would have wreaked. There's still this thought in the back of my mind—what if it comes back? Is the worst actually over? And if it does return, will the care I need be there? I feel happy and grateful, but there’s still that lingering uncertainty. That’s why I want to see changes made in Canada. While there is some access to care, it’s limited. It’s certainly not enough.
Having to wait so long for treatment affected every part of my life. It affected my ability to work and to have a social life. I couldn't maintain relationships because I felt like a burden. While I wasn’t worried about fertility at the time, I still wanted to know that I had options. Whether someone is certain about having children or not, I still think people should have that choice. For me, the priority was getting my health under control and being able to function again. There were so many days I woke up and thought, can I keep doing this? It's extremely isolating.
That’s why I started an endometriosis support group at home. It’s a space for those suffering from endometriosis to connect with others who understand what it’s like. We advocate for better funding when it comes to endometriosis research, more excision training for gynecologists and more funding for the clinic at IWK Health Centre in Halifax. We want preventive care, like family physicians being properly educated on endometriosis and how to help patients navigate it, or at least manage symptoms until they can see specialists. We want reduced wait times to see those specialists.
Overall, we want to see a change in the culture around women’s health. This isn't some niche specialty. We make up 50 percent of the population, so it's about time. We've been left out long enough.
