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TORONTO — Katie Luciani spent years being told that her weeklong debilitating pain every month was a “normal” part of getting her period.
“My symptoms showed up when I was 11,” said Luciani, who is now 38.
“I was in bed in the fetal position, cramping with a heating pad, throwing up all daylong, not able to go to school at all,” she said.
Her family doctor at the time dismissed her symptoms. It wasn’t until she was in her mid-20s that a physician at a walk-in clinic in Vancouver said she might have endometriosis, a chronic disease where the type of tissue that lines the uterus grows in other parts of the body.
One in 10 girls and women live with endometriosis — often called “endo” — in Canada, but there is an average delay of five years until it’s diagnosed, according to the Canadian Society for the Advancement of Gynecologic Excellence (CanSAGE).
“There’s so many things that physicians have to learn in medical school. So when a general provider learns about endometriosis, they may have one one-hour lecture that touches on a small amount of endometriosis diagnosis and management,” said Dr. Jamie Kroft, president of CanSAGE and an obstetrician-gynecologist at Sunnybrook Health Sciences Centre in Toronto.
As a result, many health-care providers don’t think of endometriosis as a possible diagnosis right away, leaving patients with severe menstrual, pelvic or abdominal pain without answers or treatment, sometimes for more than a decade, said Kroft, who specializes in minimally invasive surgery to remove endometriosis tissue.
On Thursday, the society announced almost $500,000 in funding from Health Canada to educate primary-care providers and emergency room doctors about endometriosis.
It will also fund specialized ultrasound training, because endometriosis doesn’t always show up in regular ultrasound images, Kroft said. There will also be surgical training for general gynecologists.
Luciani, who turned to a support group at Endometriosis Network Canada after she was officially diagnosed 11 years ago and is now the non-profit’s executive director, called the funding “exciting.”
“If your family doctor doesn’t know about endometriosis, that’s sort of the first barrier that you come across because they’re really that person that can connect you with the help that you need,” said Luciani, who now lives in Halton Hills, Ont.
Conversely, having a doctor who recognizes the signs and symptoms is “life-changing,” she said.
Kroft said endometriosis invades not only parts of the reproductive system, where it can cause both pain and infertility, but can also grow in the bowel, bladder, intestines, stomach and other organs.
The disease can cause kidney damage when it grows in the ureters that connect the kidney to the bladder. In rare cases, endometriosis can even grow in the lungs, she said.
Luciani had endometrial tissue in her bladder, appendix and throughout her body from her rib cage to her pelvis.
She had the invasive tissue surgically removed, but some grew back. She’s now in medically induced menopause to stop the pain.
Hormonal medication to stop menstruation is often the first line of endometriosis treatment, Kroft said.
If that doesn’t work or if the patient is trying to get pregnant, surgery is another option, she said. Some patients may also need specialized surgery if endometriosis is damaging their organs.
Although it’s still underrecognized, public awareness about endometriosis has improved in recent years — thanks to celebrities and other high-profile people publicly sharing their personal experiences, Kroft said.
One of them is Jamie Milne, a Toronto recipe developer and social media personality with the handle “Everything Delish,” who is also Kroft’s patient.
Like Luciani, Milne had painful periods starting in adolescence, plus serious bloating, but was told by her doctor that this was normal and she should take Advil.
In her 20s, she saw a different family doctor who ordered tests and found an ovarian cyst “the size of an orange.”
She was referred to Kroft for surgery to remove the cyst, but during their consultation, the possibility she might also have endometriosis came up.
“She said, ‘do you have painful periods? Are they heavy? And you have bloating?’ And I said yes to all three. And she’s like, yeah, I think you have endo,” Milne, who is now 32, recalled.
During surgery, Kroft removed endometriosis from multiple places, including her bowel, which had been contributing to her bloating and stomach issues.
Infertility was one of Milne’s biggest fears when she was diagnosed
But eight months after Kroft performed her surgery, Milne conceived her son, Jack, who is now 16 months old.
“After the surgery, I was like, ‘I feel like a new person.'”
Milne started raising awareness about the disease from her hospital bed at Sunnybrook, reaching out to about three million followers.
“I posted just saying, you know, ‘endometriosis is more than just a painful period.’ My social media just blew up,” she said.
She was amazed at how many people saw her posts and recognized their own symptoms.
“They were like, ‘oh wow. Everything that you’re saying is what I experience,” she said.
Milne continues to use her platform to share information and have conversations about endometriosis regularly.
“It pains me to see how many women are struggling and they’re not getting the care that they deserve,” she said.
But she’s happy that her posts are helping people realize they may have the disease and then taking that information to their health-care providers.
“So many women have approached me being like, ‘you helped me get my diagnosis.'”
This report by The Canadian Press was first published Sept. 18, 2025.
Canadian Press health coverage receives support through a partnership with the Canadian Medical Association. CP is solely responsible for this content.
Nicole Ireland, The Canadian Press
