Ottawa woman overcomes endometriosis after rare surgery performed at The Ottawa Hospital
It’s the 1st time pelvic-neurosurgery has been performed at the hospital
Danika Fleury, a 34-year-old elementary school teacher with endometriosis, says a rare surgery she underwent at The Ottawa Hospital this fall has restored her quality of life.
Fleury has been living with endometriosis symptoms for more than a decade, but until this year she’d never received a formal diagnosis.
Endometriosis occurs when endometrial tissue, similar to the lining of the uterus, starts to grow outside of the uterus. It affects at least one in 10 girls and women in Canada, according to The Endometriosis Network Canada. The disease is incurable.
Fleury’s condition began to decline in 2022 when she was diagnosed with another disease: breast cancer.
Because her cancer was hormone-sensitive, Fleury had to stop taking birth control, a medication that had long suppressed her endometriosis symptoms.
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Fleury underwent a mastectomy and got rid of her cancer, but the endometriosis only got worse.
She began experiencing severe pelvic pain, decreased nerve and muscle function, and even difficulty walking.
"For me it became really debilitating and disabling," Fleury recalled.
Fleury sought help from several gynecologists in the city, but encountered barriers due to the severity of her condition, wait times and limited access to the complex care it required.
Last year, she was finally referred to The Ottawa Hospital’s Shirley E. Greenberg Women’s Health Centre.
"It was with advanced imaging that we realized this is not just another case of endometriosis, but a case of deep endometriosis involving the pelvic nerves," said Dr. Sony Singh, department head of obstetrics, gynecology and newborn care at The Ottawa Hospital.
Singh explained that Fleury's complex condition required a similarly complex procedure known as pelvic-neurosurgery, or neuropelveology, to remove the endometrial tissue encasing her pelvic nerves and organs.
Until Fleury’s operation in September, the surgery had never been performed at The Ottawa Hospital.
Surgery 'absolutely life-changing’
An interdisciplinary team of radiologists, gynecologists and surgeons prepared for the surgery using imaging and virtual reality technology.
"We're able to map out her disease using virtual reality, taking MRI images and translating them to something that I could understand and see easily," Singh said. "My students, my colleagues, and even Danika could see."
Singh and his colleagues practised the surgery on cadavers and synthetic tissue at The University of Ottawa’s Skills and Simulation Centre.
Singh said the planning he and his team did in the leadup to the operation was vital.
"We wanted to get a complete excision," he said. "[It] is a scary surgery because the nerves are surrounded by blood vessels. One wrong move and you can have a severe and major complication."
Though there were risks, Fleury decided to proceed with the surgery in September.
She said while she experienced some pain following the operation, the pain caused by her endometriosis went away "almost immediately."
On occasion, Fleury said she still experiences electric shock-like sensations in her pelvis, and she has difficulty with leg strength. But she emphasized that "the surgery was absolutely life-changing."
Doctor calls for national action plan
Pelvic-neurosurgery is uncommon, according to Dr. Nucelio Lemos, a urogynecologist in Toronto.
"I am not aware of any centre that is providing this kind of care outside of Ontario," he said. "We definitely need to push for the creation of centres of excellence that will help cover that gap."
Lemos is the Friedrichsen Cooper Chair of Endometriosis and Chronic Pelvic Pain at Toronto's Mount Sinai Hospital, which is home to the leading and only dedicated clinic for neuropelveology in Canada.
He attributes the lack of access to the surgery to the fact that neuropelveology is a relatively new discipline developed in the early 2000s, with few specialists trained to diagnose and perform surgery for conditions such as endometriosis.
Those who are trained to treat the conditions often don’t have the resources needed for their practice, he said.
The team was able to perform Fleury’s pelvic-neurosurgery thanks to grants from the province and funding from the hospital, but Singh said it's not enough to make the procedure accessible to more patients. That's left many with few options for care unless they can afford to pay for it outside of the country.
Singh is among advocates calling on the federal government to develop and fund a co-ordinated national action plan for endometriosis. Australia and France have implemented similar plans.
"This will make a positive return on investment," Singh said. "You get Danika working back as a teacher. You get families back together because of the years of suffering. You get them healthier and better."
Fleury is also hoping to advocate for other women dealing with endometriosis by sharing her story.
While she’s still recovering from the surgery she underwent in the fall, Fleury is eager to return to teaching French immersion at Broadview Public School, hiking and travelling — passions once impeded by her disease.
"The best thing that's happened to me is just regaining the quality of life that I'd lost," she said. "It's really given me back my spark and my light and my hope for the future."
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