Motorcycle accident toronto today had heard from dozens of women across Canada about the struggle to access care for endometriosis, several of whom are now seeking or have sought help outside of Canada. This is Part 1 of a three-part series on why women are choosing to leave their own country for medical help. Part 2 will be posted on Tuesday, Sept. 3 and Part 3 will be posted on Friday, Sept. 6.
As a nurse, Jennifer Todd is no stranger to navigating the health-care system, but after more than 20 years with debilitating pain, she made the difficult and costly decision to leave Canada for treatment.
In March, the 37-year-old travelled from her home in Kelowna, B.C., to a specialized clinic in Mexico to seek treatment for her endometriosis.
The nurse is just one of many women with endometriosis who are looking at treatment options outside of Canada due to a lack of qualified doctors and long wait times for help.
After having to take a leave from her job at the end of 2023 when the condition became too much to manage, Todd says she could not wait any longer, so she and her husband started exploring options outside of Canada.
“I just couldn’t function. I basically had 10 good days a month — debilitating cramps, headaches, fatigue, ongoing nausea — it was a lot. I felt at that stage I had so much taken from me and it just infiltrated all areas of my life,” Todd recalls.
Endometriosis is a debilitating chronic condition that occurs when tissue similar to the lining of the uterus implants abnormally outside of the uterus to form lesions, cysts, nodules and other growths. When left untreated, the condition can spread to other organs, causes obstructions and flares up each month during menstruation.
Endometriosis Statistics.
Infographic by Fasai Sivieng
Despite feeling immense pain since she started her period at 14, Todd did not get an official diagnosis until she was 27.
“I ended up just about passing out on my bathroom floor one morning and calling my husband to come home because I didn’t know what was wrong with me. At that point, I was 23 years old, and I could barely get off the floor,” Todd remembers.
She says every time she would come in for help, doctors dismissed her pain and symptoms, eventually finding a doctor at a walk-in clinic with previous experience with the condition who referred her to a clinic at B.C. Women’s Hospital for an official diagnosis.
“Over the years, you just get questioned: are your symptoms really that bad and is it really impacting you that much?” she says.
Getting treatment: ‘It is such a painful, long, frustrating process’
Todd says she was put on birth control to help manage the pain by suppressing her hormones but says that only masked the symptoms, noting her “disease progressed quite significantly on birth control.”
She later struggled to get pregnant. She says she had to stop all treatment and that after giving birth, her symptoms only got worse.
After waiting nine months to see a surgeon in 2022 she would find out her endometriosis had progressed to Stage 4 and spread beyond her uterus.
“They knew it was on my bowel. We tried to have that surgery be as most fertility-preserving as possible, I did keep my uterus, one of my ovaries, but otherwise they took out the endometriosis that they could access easily — my ovary that was totally encased, and my appendix, which also had endometriosis on it,” Todd recalls.
Following this, she says doctors told her she would likely need another surgery but was not put on a wait-list at the time.
Following 18 months of trying to get pregnant she says she was eventually referred to the B.C. Women’s clinic in November 2022.
“All these things take so much time. Anyone you talk to, you will say it is such a painful, long, frustrating process,” Todd says.
She says despite being previously told she may need a bowl resection, she was told to try birth control again.
“We kind of came to a compromise in trying birth control and then waiting for an MRI, which would give us a more definitive picture of what was happening in my bowel,” she says
“I got in quite quickly in April of 2023, and then there was another huge delay. They decided, ‘Oh, you do have endometriosis on your bowel. You’ve got a nearly four-centimetre growth on your bowel. At this point, then we have to bring in a general surgeon.’”
But Todd says because there are only a few surgeons trained enough to treat her level of endometriosis she faced a long wait for help.
By September 2023, she says she was on a wait-list of one to two years for a full hysterectomy and bowel resection, but her condition only got worse.
“My nodule on my bowel grew from nearly four to seven centimetres in a year on birth control. That could have had quite a detrimental impact on my life that if I had left that — which, at the time in Canada, my surgery date was unknown — if I’d left that, there’s the chances I could have ended up with life-altering consequences,” she says.
“By this point, I am missing out on countless family events. I am exhausted. I am struggling to maintain my job as a registered nurse. I’m missing so many shifts, due to pain and fatigue and illness because my inflammation was so high, I just got everything that my daughter brought home,” Todd recalls.
“It was really severely impacting my life at that point and in the years prior, it really was to I’d have work part-time, which I was lucky enough to be able to do.”
Feeling hopeless and faced with a wait time of another year or two she and her husband started to investigate surgeons outside of Canada, contacting clinics in the United States, and then finding one in Mexico.
Because of her medical training, Todd says it made it easier to know what to research and which questions to ask when she was looking for a surgeon but knows for most that is not always easy, and she still faced challenges.
“I know what to look for if I run into complications, but there is so much to think about: updating my will, writing a letter to make sure that my child could come to Mexico with her grandparents if I got really sick and couldn’t come back. There is getting insurance, travel, medical insurance, there’s so many things.”
She says in total for the surgery and travel expenses she paid around $30,000 Canadian but says she faced prices of $80,000 or more from some sites in the United States.
“I feel confident that I made the right decision for me. I feel like I was sort of forced into that decision by the state of our health-care system. I feel immensely grateful that I was able to act on that and go elsewhere for surgery because it’s so overwhelming to be laying in your bed day after day after day, not knowing when it’s going to change,” Todd says.
Travelling for care: ‘It’s a real equity issue’
Philippa Bridge-Cook, a board advisor and founding member of the Endometriosis Network Canada, says wait times during the pandemic grew and people waited one to two years to first see a specialist and then on average another one to two years for surgery.
She says while going out of the country to get endometriosis treatment is not uncommon, it is becoming more frequent now that wait times have grown but notes it is not an option available to all.
“It’s a real equity issue because people who consider doing that, you can only consider doing that if you have a certain level of financial means that will allow you to pay for that kind of out-of-country care,” Bridge-Cook says.
“Everybody should be able to have access to that kind of timely care in Canada.”
While she is doing well post-surgery and still recovering at home, Todd can’t help but feel that if it were caught sooner or treated earlier with surgery to remove it, it would not have spread as much as it did.
“It was really overwhelming to see that birth control was it for me. That was really, really hard to hear,” she said when asked about having to choose between treatment for her condition and having a baby.
“I think, knowing what I know now, I wish I were offered excision surgery (to remove the endometriosis) from the get-go. I would have missed out on so many things in my life if I didn’t have that, like my severe infection, all the pain, the financial hardship of not being able to work full-time as a young adult. Socially and my mental health I think there’s so many things that would have been a lot different for me if I’d had that surgery right off the bat.”
Todd feels like treatment options for women with endometriosis in Canada are severely limited compared to what other countries offer.
“I feel like a lot of the doctors are doing as best as they can, and you hear so many stories of people who’ve had laparoscopic surgery from their local gynecologists, and while their local gynecologists might have the best of intentions, they just don’t have the level of exposure to endometriosis that’s needed.
“It’s difficult. You want to be able to trust the system and trust your specialists, and it’s hard when you feel like you’ve been let down by that system, and it’s just with the limited resources.”