Every month, a group of women gather at the Peoples’ Place library in Antigonish, N.S.
They vary in age and background but all share one thing in common — endometriosis.
“We’re very silenced when it comes to endometriosis,” says support group member Vanessa Zwicker. “The overall feedback that we get from this room is just feelings of being valued, heard and seen.”
The support group is a judgment-free place for the women to share their experiences and what’s proven effective in helping them manage the chronic condition.
They incorporate arts and crafts into their meetings as therapeutic tools and even collaborated on a mural to express what it’s like living with the disease.
“This is just something to supplement until there’s actually effective changes that come in place where women aren’t struggling to access resources,” says Cairista MacIsaac, an endometriosis patient and women’s health advocate. “(So,) they’re not waiting three to three and a half years to see a gynecologist, they’re not waiting a year to two years for surgery.”
Dr. Craig Morton is an OBGYN specializing in endometriosis. He has no connection to the support group, but treats Maritime patients out of his clinic in Saint John, N.B.
He says endometriosis is a condition where lesions — made of tissue similar to that found in the uterine lining or endometrium — grow outside the uterus, causing debilitating pain, heavy menstrual bleeding and fertility issues, along with a host of other complications.
“Endometriosis is a condition that affects approximately one in 10 reproductive-age people,” Morton says.
MacIsaac has had endometriosis since she was 13 years old, but despite chronic pain and heavy periods, it went misdiagnosed until much later in life.
“The doctor more or less told me, here’s birth control, this is a woman’s issue, you’re just gonna have to deal with it,” MacIsaac says. “I remember my mom teaching me how to layer pads in my underwear so I could make it through a school day when I did go.”
“Why do we keep normalizing pain? Why do we keep normalizing heaving bleeding? These are things that are impacting young women’s lives to the point, some of which, they don’t even know if they’re gonna be able to graduate school.”
MacIsaac recalls being bullied and struggling to keep up with schoolwork in her teen years due to her endometriosis.
“I remember at one point, I was out for a few days. And when I came back, one of the boys in my class looked at me and said, ‘You’re always sick. Why don’t you just go die already?’ And that stayed with me to this day because I thought I was crazy,” she says.
“Eventually that shapes your perception of who you are as an individual, and then you move through life with that perception.”
Although commonly understood to be a women’s reproductive health issue, endometriosis has been discovered in some men as well, according to the U.S. National Library of Medicine.
Endometriosis lesions spread to organs, causing them to fuse and sometimes rupture, MacIsaac says, and although primarily found in the pelvic region, endometriosis can occur anywhere in the body.
“Painful periods are a symptom, they’re not the cause of the disease,” MacIsaac says. “I would argue that the disease isn’t even a reproductive disorder, it’s a whole-body disease.”
As per journal articles published to the U.S. National Library of Medicine database, there have even been reports of endometriosis spreading to patients’ brains and eyes.
“There have been cases, and when they get their period, their eyes start to bleed,” MacIsaac says.
Although not fully understood among health-care professionals, Morton says endometriosis spreads in a variety of ways.
“There’s a few mechanisms that have been described and are commonly accepted,” he says. “The most common is retrograde menstruation, meaning that endometrial tissue actually passes through the fallopian tubes into the pelvis.”
“Other mechanisms … include metaplasia, where one tissue transforms into another type of tissue, or spread through the blood or lymphatic system. And then the other that we see sometimes is what we call ‘iatrogenic,’ meaning it’s happened because of surgery. For example, at the time of a caesarean section.”
Endometrial tissue survives off hormones — particularly estrogen — and will continue to grow within the body unless surgically removed, Morton says.
Other than responding to the body’s estrogen, which is primarily produced in the ovaries of female patients, he says the lesions can create their own estrogen supply.
“So, it can feed itself,” MacIsaac adds. “This is the scary thing about it — we can do all these things. We can do a hysterectomy… (but) it’s not a guarantee it’s going to tackle the actual disease.”
Two surgical techniques to treat endometriosis are ablation and excision.
“Excision surgery at this moment in time is the gold standard,” MacIsaac says.
“(With) ablation, you just essentially burn the disease at the surface. Meaning that if there’s anything below the surface, it will just continue to grow. Excision is actually when you go in and you dig it out from the root. And you remove it from the body.”
Typically, excision is the preferred surgery method because it results in less inflammation and decreases the likelihood of the disease’s reoccurrence, Morton says.
“The accepted and preferred way to deal with endometriosis is through a minimally invasive type of surgery done through small incisions,” he explains, adding, these surgeries can also involve restoring a patient’s anatomy.
“Meaning unsticking organs from each other,” Morton says. “And in some settings, also excising the disease from certain organs like the bladder, or the bowel, or the ovaries.”
MacIsaac received ablation surgery at the IWK Health Centre in Halifax, but says when that didn’t eliminate her chronic pain, she ended up fundraising to get excision surgery in New York.
It cost her C$28,000, and that included “everything — the flight, the meals, the surgery, the accommodations, the hospital fees. And it was well worth it,” MacIsaac says.
“I’m very, very fortunate that I was able to have this surgery and have the results I did, because not everybody has those results. The reason being is that the disease gets left in the body so long, it does its damage.”
But MacIsaac says travelling internationally for care is a burden no one should have to endure.
“My story isn’t a success story that I navigated the system successfully, because I didn’t,” she says. “I had to go out of country, and nobody should be left in that position.”
According to the Nova Scotia Department of Health and Wellness, endometriosis care in Nova Scotia is provided by approximately 45 general gynecologists across the province.
“If the case is deemed to be complex and requires excision of endometriotic deposits or ablation to preserve fertility, it would generally be referred to IWK Health, where both ablation and excision are performed,” a statement reads.
“At this time, IWK Health has two gynecologists fully trained in minimally invasive procedures who lead this work. If procedures require bowel or bladder surgery, they would work with other surgical disciplines to facilitate this care. The range of care is at a high standard and on a par with other tertiary centres across Canada.”
However, MacIsaac says, in her experience, when significant lesions are found in areas outside the pelvic region, more expertise and manpower is required than is available in-province.
“Definitely access to excision surgery for endometriosis is low,” Morton says. “And that’s not just Nova Scotia — that’s New Brunswick, Prince Edward Island, and I believe Newfoundland as well.”
“We don’t have control over our colleagues in other surgical disciplines,” he adds. “Often you are reliant on their level of training and comfort level with managing endometriosis of extra-pelvic sites … Any surgery that involves multiple disciplines is challenging from a scheduling perspective. It’s also challenging from an (operating room) allocation.”
And if gynecologic surgeons are working at a facility that doesn’t have ready access to a colorectal surgeon or a thoracic surgeon, this can complicate the process, he says.
“It can be challenging to manage all of that in the course of one operation. And I would say that reflects most of the hospitals in the Maritimes, where that expertise is not readily available.”
But there are strict criteria to be eligible for out-of-province surgery.
The health department states, “Referrals for care outside the province or country are made by specialist physicians for medically necessary services not offered in Nova Scotia (or Canada for out-of-country referrals), only after all other treatment options have been exhausted, and submitted to the MSI medical consultant for review.”
“If the treatment is not provided in Nova Scotia (or Canada for out-of-country referrals), the Province may cover the treatment where it is available, along with some travel and accommodation costs for the resident and a person to support them, if necessary. That said, because endometriosis treatment, including both ablation and excision, is available within the province, if a referral were sent seeking pre-approval for these treatments outside the province or country, it would not meet the eligibility criteria.”
Zwicker’s endometriosis is currently being monitored, but she will eventually need surgery.
The 26-year-old has diaphragmatic endometriosis, meaning the lesions grow on her diaphragm.
“So far it’s only in front of my stomach, so they’re not super concerned, ” Zwicker says. “But down the road it’s definitely going to be more of a concern.”
Zwicker currently manages her endometriosis by taking stomach medication every day, but she hopes surgery will be more accessible down the line.
“It could spread to my heart and my lungs if they don’t keep track of it,” Zwicker says. “I’m hoping that by the time that I have to get excision surgery, there will be options available (for me) in Canada.”
