group campaigns for national endometriosis strategy

a new campaign is pushing for comprehensive policy action in canada regarding endometriosis, something that other western nations have either begun or have already implemented.

endometriosis, a disease that causes the tissue that normally lines the uterus to grow outside of the uterus, affectsapproximately one million canadians and can result in inflammation, scarring and debilitating pain. research indicatesthat school-aged children with the condition are more likely to miss school each month than those without the condition. adults may lose out on approximately 10 hours of work productivity, which translates into an estimated $1.8 billion loss to the canadian economy per year.

in 2021, the ontario government passed bill 273, designating march as endometriosis awareness month, with the goal of educating “the public about this common yet misunderstood disease, and to encourage conversations and education around what is a “normal” period.”

endoactcanada, launched towards the end of january, is advocating for a canadian national action plan for endometriosis. the plan, the group says, should be based on consultation with patients who have been diagnosed with endometriosis and aim to advance “evidence-based solutions.”

“as a public health and social justice issue, endometriosis has been ignored for too long,” philippa bridge-cook, phd, a molecular biologist and chair of the endometriosis network canada ’s (enc) board of directors, said in a news release. “people with endometriosis in canada need patient-centred policy that is informed by evidence, which requires collaboration combining the expertise of patients with that of clinicians, researchers, and government stakeholders.”

other countries are already committing at a national level to raise awareness of endometriosis and improve care.

in january, french president emmanuel macron tweeted that his government would launcha national strategy for endometriosis and earmark funding for research and treatment. meanwhile, the australian national action plan for endometriosis— released in july 2018 and updated in august 2021— contains overarching goals related to improving general awareness and education on endometriosis as well as improving diagnosis and treatment for patients. shortly after the action plan was announced, the government announced 2.5 million aud for research initiatives and one million for endometriosis education for health-care professionals.

‘i must be weak’

for samantha lyster, a endometriosis patient who had previously been told there was nothing wrong when she complained of abdominal pain, finding a doctor who recognized her condition was life-changing.

“being in his care changed the course of how i felt even about myself. there’s that stigma and that shame: i’m being dramatic. this pain isn’t real. no, they can’t find anything. there’s nothing on these tests. no one understands. i must be weak. i must not be able to handle this properly,” lyster toldhealthing. “it’s one of those things that just kind of gets to you and wears on you…you just kind of feel the that you’re being a burden.”

lyster’s experience is not uncommon.

“there are a lot of people struggling,” bridge-cook, phd, toldhealthing. “they haven’t found the right doctor or their pain is still being dismissed by their doctor, they can’t access the treatment, or get a diagnosis, and even if they do get a diagnosis, they can’t get the treatment they need afterwards — either because they can’t afford it or it isn’t available.”

emma jones is a multimedia editor with healthing. you can reach her atemjones@postmedia.comor on twitter@jonesyjourn

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