Canada must offer ‘gold-standard’ endometriosis care so women don’t seek help abroad: patient
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Global News 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 3 of a three-part series on why women are choosing to leave their own country for medical help. Part 1 was posted on Friday, Aug. 30, and Part 2 was posted on Tuesday, Sept. 3.
After years of chronic pain ruling her life, Lauren Walsh says she finally feels like a normal person again.
However, it took a costly procedure to get that sense of normality back.
Last year, the 24-year-old Toronto resident went to Atlanta, Ga., for excision surgery to treat her endometriosis, a procedure that, due to long wait times, she would still be waiting for had she scheduled it to be done in Canada.
The minimally invasive procedure involves removing the endometrial tissue that grows outside the uterus and repairing any damage caused by endometriosis.
“It’s completely freeing just getting to exist as a healthy person,” she says.
“I don’t have to think about endometriosis in the background of my day-to-day life. It’s not something that I have to prepare for every time I leave the house.”
But the freedom she feels now is very different from how she felt just a short time ago.
“It was always something that I had to think about, even when it wasn’t directly impacting my life and forcing me to miss school, or to miss work, or to be unable to do hobbies that I liked to do, or just generally making me feel miserable on any given day.”
Walsh first started to experience immense pain when her period began around the time she was 14 years old, but she was 21 by the time she was officially diagnosed.
Endometriosis Statistics.
Infographic by Fasai Sivieng
‘This was what it must be like to be a woman’
“I didn’t know what I was going through was wrong, and I just felt this was what it must be like to be a woman — this must be the experience. There were many, many years where I didn’t even question it. I just felt that that was how I had to live,” she recalls.
Walsh says she assumed the level of pain she was in was normal because other women in her family also had severe pain, and it was not until she was older that she started feeling something was not right.
She said she feels the health education in school failed to teach her what a normal period does and does not look like.
Walsh would later go on to be the first in her family diagnosed with endometriosis and she says other family members have since also gotten the same diagnosis following her experience.
“I really think that had I had a better education around my body and what was normal and what was not normal, I would have been so much better equipped to advocate for myself at a younger age, and so many years wouldn’t have passed wherein my disease was able to progress to the point where I had so many symptoms.”
When she had surgery to remove the endometriosis adhesions, the doctors told her it had spread throughout her body, impacting not only her uterus but also her intestines, bladder, and appendix.
“As the disease was allowed to proliferate in my body over the years, my symptoms started to progress beyond just a bad period as the disease started to affect my other organs,” she says.
But Walsh is upset it took leaving Canada to get the treatment she needed.
The long and painful journey to treatment
After she was diagnosed with endometriosis, Walsh was put on medication to suppress the hormones, but she says that only slowed the spread of the disease.
“With that decrease of estrogen in my body, I was introduced to menopause at the age of 21, which brought with it some pretty unfortunate experiences. I was anxious all the time, I had brain fog, hot flashes, night sweats, insomnia, hair was falling out, and all of this while I was just trying to survive as a university student.”
Walsh says after a few months on the medication, all of her symptoms came back.
“I had to up the dose of that medication, and with that increase in dosage came an increase in those debilitating side effects, and so with that increase in side effects, unfortunately, I could not continue to function. So even though it was helping with my symptoms of endometriosis, it wasn’t a bearable way to live my life.”
Eventually, she says the medication stopped working again, and she had to decide whether to try a different medication or get the endometriosis surgically removed.
“What I was told was that if I pursued the surgical route, I would have to have repeat surgeries every few years, and I would be unlikely to be able to get off of the hormone-altering medication in between surgeries,” Walsh recalls.
Walsh says that not being confident in either option, she started to do her own research, which was when she discovered the Centre for Endometriosis Care in Atlanta.
She says she was enticed by the idea of having a surgeon who treated only endometriosis versus a gynecologist who treats several different conditions because they were more highly trained to remove more of the endometriomas, leading to more time in between surgeries and long times without pain.
In May 2023, she went down to Atlanta for treatment.
“A few weeks after my surgery, all my symptoms of endo were gone, and my function as a 23-year-old was fully restored,” Walsh recalls.
She says now she is symptom-free and is “really looking forward to enjoying the next decade” before she needs the surgery again.
While Walsh would not say how much the treatment cost, she did say that she is grateful to be in a position where her parents were able to help her pay for it. Yet she says she hopes that in the future, the level of care she received is something all women have access to.
With more visibility toward endometriosis and to what women are going through, she says she is hoping women can get “gold standard treatment” without having to leave Canada.
Creative solutions to addressing wait times
While wait times for treatment are long, doctors are working towards creative solutions to address the backlog and lack of specialized physicians.
“I think that we really have to start looking at the wait times and how many people are on the wait lists and better align with that with what is being done across provinces with cancer cases where they look at wait times and allocation of OR time based on the number of patients waiting for surgery, but I think we need to make sure that that’s done more for patients with endometriosis as well,” says Dr. Jamie Kroft.
Kroft is the deputy chief of gynecology and obstetrics at Sunnybrook Hospital and an associate professor at the University of Toronto.
She says that with the support of the provincial government, Sunnybrook has partnered with Women’s College Hospital to share OR time to alleviate the backlog of women waiting for benign gynecological procedures like endometriosis.
She says that creative solutions like this are what is needed to cut down on the long wait time for surgery, but also that more needs to be done to improve education and more funding is needed to enhance training for physicians to know how to treat endometriosis, thereby improving access to more subspecialists for patients who really need it.
Kroft, who is also the president of the Canadian Society for the Advancement of Gynecologic Excellence, says the society is trying to improve education as well as access to endometriosis treatment by partnering with patient support groups and advocacy groups as well as both primary care physicians and gynecologists.
“Patients can have quite significant morbidity from the disease, but traditionally, it hasn’t been given the same recognition, the same kind of funding for research and clinical funding as cancer cases. I’m not taking away from the severity and the need for those cases, but I think that it is becoming more recognized that although this isn’t cancer, it can have a huge impact on patients’ quality of life and then also, more significant medical impacts.”
Looking to the future, Walsh hopes that more awareness will help make it easier to access care in Canada.
“I’m hoping that by the time I may need another surgery, it’ll be available in my local hospital, and if it’s not, I would without hesitation go back to The Center for Endometriosis Care because the care that I received there was absolutely fantastic,” Walsh says.
She hopes that moving forward, the government will take the experiences of women more into account when making changes and decisions.
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