Online groups help fill the gaps for Canadians with endometriosis

In the absence of medical support, patients turn to Facebook

In April 2020 I felt a sharp pain in my lower abdomen. It wasn’t gas, or a period cramp, or my appendix. It felt like something in my body was exploding. I couldn’t lie down; for two days, I slept sitting straight up. I knew something wasn’t right.

I called my doctor as soon as I could get out of bed.

“Something’s wrong,” I remember telling her. “This pain isn’t normal.”

She ordered an ultrasound to diagnose the source of my pain.

With unusual speed, my doctor called me back to tell me what the ultrasound showed. A giant cyst in my uterus—15 centimetres, to be exact.

“I’m going to need to refer you to a gynecologist for this,” she said.

I was confused as she normally does general gynecology procedures.

“Aren’t you supposed to be my gynecologist?”

She paused. “Yes,” she said, “but you’ll need a specialist for this. But it’s not serious. It’s not serious at all.”

I felt a sense of dread starting to pool into my stomach. I felt like she wasn’t telling me something, so I did what everyone does when they have medical symptoms: I asked Google.

Hemorrhagic cysts. Functional cysts. Ovarian cancer. Endometriosis.

Endometriosis is a disease diagnosed in one in 10 women, non-binary, and trans people in Canada. The tissue that would normally grow inside the uterus grows outside of it, causing lesions, adhesions, and fluid-filled cysts called endometrioma. It may affect many more people who never receive a diagnosis because it rarely presents itself on medical imaging.

Primary symptoms include pelvic pain, though some people might not have any. The best treatment and diagnostic method is laparoscopic excision surgery, where the surgeon cuts the endometriosis out to remove it.

Many have been dealing with symptoms for decades. In the process, the isolation of the illness has led patients to lose partners, friends, family members, and jobs.

Thanks to the Endometriosis Network Canada (TENC) Facebook group, patients learn to advocate for themselves, pushing to receive the treatment that is right for them. Most importantly, they gain shoulders to lean on for support.

The search bar at the top of the page has become a godsend: patients can research primary symptoms, bust myths, and learn to spot red flags in treatment.

Illnesses that affect mostly women are chronically ignored, and women’s health concerns are dismissed more compared to men. Those with endometriosis face not only their diagnoses but the medical sexism that gets in the way of their effective treatment.

A Visanne package. Photo provided by: Jessica Bouchard

As an initial symptom relief treatment for endometriosis, doctors often prescribe hormonal contraceptives like birth control or IUDs, or hormone-balancing medication like Visanne, the Lupron injection, or Orilissa which can have a variety of side effects.

Visanne, for example, is a daily pill intended to stop the menstrual cycle, reducing endometriosis pain. It is also said to suppress endometriosis growth. The side effects, however, include hair loss, weight gain, brittle bones, acne, spotting and occasionally ovarian cysts.

All of the patients The Pigeon spoke with for this story mentioned that they’ve always had painful periods. This isn’t uncommon. In fact, Plan International Canada says 70% of Canadian women say they’ve missed out on school, work, or other activities because of painful periods.

Unfortunately, patients aren’t often educated on what is normal when it comes to reproductive health. Periods remain a taboo subject across the world and people who menstruate are reluctant to speak to even their physicians about abnormalities.

Pain is often dismissed as normal menstrual cramps, and the old trope of female hysteria can remain at play. For some patients who spoke to The Pigeon, the trauma of being made to feel like they were making it up was too much for them to share many details in their interviews.

Niki Anne lives in Fort McMurray, Alberta. As a woman diagnosed with endometriosis, she said she felt like she was slipping through the cracks of the healthcare system.

She was originally diagnosed with polycystic ovary syndrome at 14, a sister disease to endometriosis that consists of irregular periods. She hadn’t known much about endometriosis at the time, especially without online resources like Facebook support groups to turn to.

Anne’s doctors suspected she had endometriosis but would not confirm it with laparoscopic surgery as they claimed there would be nothing they could do for her regardless.

“I just kind of suffered on my own,” she said. “I was told by my doctor that pregnancy would cure it.”

After her first pregnancy, her pain temporarily eased—but when her second child was born, she ended up in the hospital begging for an ultrasound.

“They told me it wasn’t necessary. They gave me paperwork and told me to get a routine one done, and where I live there’s a two to three-month waitlist. So, I ended up having to drive five hours to the nearest city.”

There, they found a nine-centimetre endometrioma in her ovary which had pushed her IUD, placed after her second pregnancy, out of the way. She had been walking around for months with a perforated uterus.

Three years ago, she finally had laparoscopic surgery. Her scheduled hour-and-a-half-long procedure took over three because of the level of scarring. By the time she woke up, her surgeon was in another operating room.

“I ended up waiting four weeks before anyone would tell me whether I had lost my ovary or not.”

In 2019, she was referred to an endometriosis specialist for a second laparoscopic excision surgery. The specialist took her on, and she waited six months for an appointment, but the specialist subsequently retired. Healthcare cuts in her province and the COVID-19 pandemic further delayed her care.

She has been asking for a hysterectomy since the birth of her second child when she was 24 years old. She began experiencing abnormal menstrual pain at 14—and now, at 29 years old, is still waiting to be treated for her endometriosis.

“You feel absolutely worthless, like you don’t matter,” she said. “It feels like nobody actually cares you’re in debilitating pain every day.”

She believes there’s a lack of knowledge of endometriosis among general practitioners and patients. Both may not recognize symptoms as being associated with endometriosis. The knowledge she now has of the disease comes from what she learned online.

“These Facebook groups are great because there are a lot of problems I’ve had my entire life that I didn’t associate with endometriosis,” she explained. “Then seeing other people post […] everyone else has these same problems.”

Dr. Sarah Maheux-Lacroix is a gynecologist, clinician-researcher, and an assistant professor in the Department of Obstetrics and Gynecology at l’Université de Laval. She did a laparoscopic gynecology surgery fellowship in Sydney, Australia, and is hoping to improve treatment for people with menstrual disorders here in Canada.

For some gynecological procedures, even with pre-operative mapping of the abdominal and pelvic area, doctors won’t be able to know the extent of the endometriosis until they’re in surgery.

“It’s not every gynecologist that can operate for severe endometriosis,” she explained. “For them, it might be a huge challenge.”

According to Dr. Maheux-Lacroix, what’s missing is funding for endometriosis research.

“If they gave us money to put in place good programs for pain tolerance, [or] if they gave money so we could have psychologists, physiotherapists, immunotherapies,” she explained. “We’d have a nice clinic that would attract people who are ready to fight again this kind of pain.”

She recognizes it’s not easy for patients to deal with the pain they are in and not get any care. “It’s not easy for the doctors either—to feel useless, to not be able to help their patients,” she said.

She compared the disease to diabetes, which has the same frequency as endometriosis—it affects one in ten adults in Canada. In the last 20 years, endometriosis has received 7.3 million dollars in funding – or $7.30 per diagnosed patient.

She and her colleagues launched EndoAct Canada in 2020, a collaboration between physicians, patients, and researchers aiming to take action for endometriosis. She hopes the program will push Canada onto a path similar to that of Australia.

There, the government has both acknowledged endometriosis as a debilitating illness that affects thousands and issued a formal apology to those who suffer from it. They also introduced a National Action Plan that will fund awareness campaigns, research, treatment options, and patient care.

“If we had more resources to build good teams, it would encourage the increase of more specialists which would favour patient care,” she said.

Endometriosis education and awareness has increased in Canada in the last ten years. The diagnosis time has also decreased from an average of 10 years to five years.

What endometriosis care needs, as Dr. Maheux-Lacroix is pushing for, is funding from the federal government and recognition that it’s a chronic disease. If research is made more “attractive,” she believes the number of patients who have access to a specialist across the country could increase.

When help can’t be found from mainstream healthcare, patients often turn to alternative relief.

Pamela Frank is a licensed naturopath practising in Toronto. She said at least two of the clients she sees each week have diagnosed or undiagnosed symptoms of endometriosis.

“Often I’m seeing people that are trying to get pregnant as well,” she said. “So birth control pills aren’t really an option, Lupron isn’t really an option, [and] Visanne isn’t really an option.”

Clients often come to her after experiencing skepticism from their medical doctors. Frank blames that skepticism on the difficulty of achieving a diagnosis. There are no blood tests that can be done to diagnose endometriosis: the only way to “prove” someone has endometriosis is through surgery.

Frank helps clients manage inflammatory pain and hormones, and claims a combination of medicine for pain and natural therapy can be the most effective.

Dramatic fluctuations in hormone levels can cause some problems and discomfort—especially if these medications are being used to treat pain.

Frank uses natural remedies to try and help balance her clients’ hormones without contraceptive treatment methods when they are trying to conceive. For example, a change in diet away from hormonal or inflammatory foods can sometimes help ease discomfort.

“If you ever want to come off Visanne, then we need to have your body balanced out so then you’re not suffering,” Frank said as an example, noting the intense adjustment period clients may experience when their hormones fluctuate.

On Facebook, there is both TENC and Nancy’s Nook, a site housing documents of recommendations for pre-ops, post-ops, treatment, and endometriosis certified doctors from around the world.

When patients can’t find a doctor in Canada, they’ve turned to the list to go where they’ll be heard.

Natalia Forero is 41 years old and is originally from Colombia. She moved to Toronto two years ago and is currently a permanent resident in Canada. Her care providers, she said, missed her endometriosis. She felt she didn’t get support from the beginning.

“My first shock to understand the Canadian system is [that] it’s lacking a lot of the preventative care I had in a third-world country,” Forero said.

The waitlist for excision surgery in Canada would be two years. Going to the United States wasn’t an option financially. She decided, with her husband’s consent, to use a part of their savings to fly to Romania and get treatment from a doctor she found through the support group.

Yet, she doesn’t blame her doctors. “They learn what they learn,” she said.

Everything she’s learned about endometriosis has been through the experiences of others, not her doctors.

“Every time I have a question, I go back to the group,” she said.

When I came out of my laparoscopic surgery, my surgeon had successfully removed the cyst, but there had been more endometriosis than what appeared on my imaging, and they could not remove any of it.

When I posted my disappointment on the TENC Facebook group, people with similar diagnoses reached out to me. Patients told me they found relief in second opinions.

More importantly, they told me not to give up hope.

Jessica Bouchard was born and raised in Montreal and is currently completing a graduate diploma in journalism at Concordia University. She previously completed a bachelor’s degree in political science at McGill University.

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