A decade before diagnosis: Young women describe the cost of endometriosis

Long waits for diagnosis, no cure and being forced to advocate for treatment a challenge for women living with endometriosis

By Judith Mendiolea

Originally published by The Telegram Mar 19, 2026

Callie Getson, a UPEI education student, was diagnosed with stage 4 endometriosis last year after living with symptoms for nearly a decade. She says earlier recognition of severe menstrual pain could prevent long delays in diagnosis. Judith Mendiolea

Callie Getson was bleeding.

Days passed by, and the 12-year-old P.E.I. girl waited for it to stop, but it didn’t.

“I had a period for two months straight, bleeding to my socks every 30 minutes,” she said.

Getson had started menstruating the year before, earlier than many of her friends. After that prolonged bleed in Grade 7, she was prescribed birth control. No further testing was done and she stayed on the pill until she was 19.

When the pain returned, it escalated quickly.

“The menstrual pain became unbearable,” she said. “Unbearable.”

Now 22 and a student in the education program at UPEI, Getson was officially diagnosed with stage 4, deeply infiltrating endometriosis just a year ago, after living with symptoms for half her life.

Unfortunately, her story is far from unique. Endometriosis is a common but under-recognized chronic condition in Atlantic Canada. Official reports from 2023 Health Canada note it affects about “one in 10 girls and women of reproductive age.”

This chronic condition can cause severe menstrual pain, chronic pelvic pain, heavy bleeding, infertility and fatigue, yet patients often wait years for diagnosis.

For example, Nova Scotia’s Endometriosis Awareness Month Act (2023) cites cases of people going “up to eight years or longer without a diagnosis.” A 2020 national survey from the Journal of Obstetrics and Gynaecology Canada found Canadian patients wait on average 5.4 years from first symptoms to diagnose.

This delay has major impacts: adolescents with endometriosis miss on average 10 times more school (often multiple days per month) than their peers, and adults lose about 11 hours of paid work per week. The economic cost in Canada is estimated at about $1.8 billion per year.

What is endometriosis?

Endometriosis occurs when tissue similar to the lining of the uterus grows outside it, causing inflammation, scarring and, in some cases, organ damage. Diagnosis has historically required laparoscopic surgery, though some specialists are moving toward clinical diagnosis based on examination and history.

Medical literature shows that the disease can affect multiple organs, including the bowel and bladder, and can progress in severity over time if untreated.

For many patients, the gap between first symptoms and confirmation can stretch close to a decade.

“For 10 years, really all it would have taken was for someone to give me a physical exam,” Getson said.

She recalled emergency room visits where she was told it was a normal period and to take over-the-counter medication.

“It felt like no one cared and no one would listen,” she added.

Lauren Rogerson began experiencing symptoms of endometriosis in junior high and says years of dismissal affected her trust in the health-care system. She now speaks publicly about the need for earlier diagnosis. Contributed

Barriers to diagnosis and treatment

Lauren Rogerson’s symptoms began in junior high. By high school, she was bedridden for nearly two years. The P.E.I. teenager was referred to specialists, but her age became a barrier.

“No one wanted to put the label of endometriosis on a young girl,” she said.

At one point, she was denied laparoscopic surgery.

“They refused surgery, which is how you diagnose and how you best treat them,” she said.

Clinical guidelines acknowledge that laparoscopic surgery has long been considered the gold standard for confirmation, though access to surgical diagnosis depends on specialist referral and operating room availability.

The repeated dismissals took a toll.

“I was being dismissed by a lot of health-care workers, which really hurt my trust in the system,” Rogerson said. “I had to do medical trauma counseling in order to be able to talk about my story.”

Today, she studies nursing in Halifax, as she plans to have a career helping women’s reproductive health.

April McHugh, originally from Toronto but now living in P.E.I., was diagnosed with stage 1 and 2 endometriosis, she described a similar pattern of cycling through treatments with limited relief since before moving.

“I’ve literally tried every single thing you guys offer,” she said.

Even when she identified side effects, she struggled to be believed.

“When I’m not on the birth control, I don’t throw up. When I’m on it, I throw up. And no one would believe me,” she said.

Advocating within the system, she said, is inconsistent.

“Sometimes doctors can be fantastic, but sometimes it can be very difficult to advocate for yourself and be like, no, this is really what’s happening.”

April McHugh, who was diagnosed with stage 1 and 2 endometriosis, says chronic pain has affected her ability to work and access disability support. Judith Mendiolea

Education and work interrupted

For adolescents and young adults, the disease often collides with school.

According to The Endometriosis Network of Canada, school absenteeism linked to endometriosis can affect academic performance, graduation timelines and long-term career prospects.

Getson said she has missed university classes despite providing medical notes. Rogerson lost significant time in high school during her most severe years. And McHugh described days when pain made even basic movement impossible to the point she couldn’t work anymore.

“Literally, I can’t walk. I can’t sit. I can’t do anything. I’m screaming in pain. And they’re just like, ‘yeah, that’s endo,’” McHugh said. “Some people would call me lazy… literally, all I want is to (be able) to work.”

The unpredictability of the condition makes planning difficult. Flares can last days. Exercise, for some, can trigger setbacks.

“It’s such a lonely, isolating condition,” Rogerson said, referring to her formative years.

Before her diagnosis, she turned to the internet.

“The first YouTube video I watched of someone explaining her symptoms, I felt so heard and validated in that moment,” Rogerson said.

This sentiment was echoed by both Getson and McHugh, who talked about the need for social support and awareness regarding the condition.

For Getson, the lack of clear information compounded the stress.

“There are so many contradicting things out there and it just feels so overwhelming,” she added.

Navigating the system

Public reporting has shown that Atlantic Canada faces some of the longest specialist wait times in the country, particularly in gynecology and diagnostic procedures.

In 2021, the IWK Health Centre in Halifax opened Atlantic Canada’s first multidisciplinary endometriosis and chronic pelvic pain clinic. The clinic offers integrated care — gynaecology, pain management, physiotherapy, mental health support, etc. — to patients whose symptoms persisted despite initial treatment.

However, demand is high: the IWK reports wait times of 12–18 months on average for this clinic.

Such multidisciplinary programs are important steps, but they serve only part of the region.

In 2024, N.L. still did not have a dedicated endometriosis centre, and P.E.I. has no endometriosis specialist on the island, requiring many patients to travel — often to Halifax — for expert care.

Endometriosis Canada’s directory confirms that care in N.B. likewise depends on general gynae clinics or distant referrals.

Rogerson eventually travelled to the United States for surgery after exhausting local options. Getson, meanwhile, was referred to the IWK and is currently awaiting further testing to determine the extent of bowel involvement. Her condition has filled the space between her uterus and bowel with scar tissue.

For chronic conditions, emergency departments triage based on immediate life-threatening risk. Patients with endometriosis, whose pain can be severe but not immediately fatal, often fall lower in priority categories.

“It would feel like very bad period cramps, but 24-seven,” McHugh said. “You don’t really understand until you’re off work everyday that it’s so boring and just draining on you mentally.”

Financial strain and disability gaps

The cost of managing the disease extends beyond appointments.

National advocacy groups like The Endometriosis Network have pointed to the cumulative financial burden of chronic gynecological conditions, including medication, travel for specialist care, surgical procedures and unpaid time off work.

Getson takes Dianogest, a medication commonly prescribed for endometriosis. Insurance covers the generic version, but she said it was ineffective for her.

“Every three months, my medication costs $180,” she says.

Rogerson requires regular hormonal management and follow-up care. Travel for specialist appointments adds to expenses.

McHugh had to apply for income support when pain limited her ability to work.

“I had to fight for the social assistance that I did get,” she said.

Endometriosis is not consistently recognized as a disability in eligibility assessments.

“It’s hard for people to get disability coverage because it’s not considered a disability,” McHugh said.

Advocacy organizations have called for broader recognition of endometriosis as a chronic condition with functional limitations, particularly when symptoms interfere with employment and education.

Endometriosis affects one in 10 Canadian women. Photo by Unsplash /Unsplash

Living with uncertainty

All three women described the psychological shift that came with diagnosis, relief at finally having a name, and the recognition that they will manage the condition for the rest of their lives. The three of them are still in their twenties.

There is currently no known cure for endometriosis.

Treatment focuses on symptom management through hormonal therapy, pain control, physiotherapy and, in some cases, surgical excision. Recurrence remains common.

Getson now speaks openly about her diagnosis with peers who reach out for advice. Her message is direct.

“Advocate, advocate, advocate,” she says.

She also urges those around patients to offer practical support.

“Listening and understanding and being a safe space,” she adds.

Rogerson, who has since become involved in awareness initiatives, said visibility has improved in recent years, though gaps remain.

For McHugh, the reality is ongoing management.

“It’s kind of like a cancer that won’t kill you,” she said. “All of a sudden, this realization hits you that no matter what I do, I’m still going to deal with this every day for the rest of my life.”

March is endometriosis awareness month, and the women say recognition is only a first step. Earlier diagnosis, consistent specialist access and institutional acknowledgment of the condition’s impact on education, employment and daily life remain unresolved.

For those still waiting for answers, Rogerson said the first step can be validation, the recognition that severe menstrual pain is not something to simply endure.