In their lifetime, approximately 7% of all Canadian women and unmeasured numbers of transgender, non-binary and gender-diverse individuals, will develop endometriosis.
The community of endometriosis warriors, supporters, researchers and clinicians want to see a world where people with endometriosis receive a timely diagnosis and personalized, effective treatment. To help fuel this vision, the Centre for Pelvic Pain & Endometriosis partnered with BC Women’s Health Foundation to create a space for the community to take action through fundraising, to make critical research possible.
With over $25,000 raised and counting, the community is galvanizing to build a better future for people with endometriosis. ‘it is clear we must now add fundraising to ensure we get the help we deserve and desperately need.’ – words from Erin Fernie’s fundraising page, a patient of The Centre for Pelvic Pain & Endometriosis since 2014. Erin’s fundraiser, “I’m as Mad as Hell”, encapsulates how she feels about the lack of funding for research of this disease.
Here are seven reasons why the endometriosis community are taking action and championing this cause by raising funds:
1. Delay in Diagnosis
The average delay in diagnosis for endometriosis is 5.4 years but sometimes it can take up to 20 years. Diagnosis gives comfort – people can finally understand what is causing their pain and can start the course to receiving appropriate treatment. Through funds raised, the Centre for Pelvic Pain & Endometriosis wants to conduct research identifying potential biomarkers for endometriosis that could assist with diagnosis, helping us understand disease prognosis and uncover new treatments.
2. Endometriosis is a full-body disease
Poor mental health in endometriosis patients has been demonstrated in studies again and again, around 60 per cent of the patients at the Vancouver clinic suffer from depression and anxiety, says Dr. Catherine Allaire, Medical Director of the BC Women’s Centre for Pelvic Pain & Endometriosis. That’s why they offer clinical counselling as part of the interdisciplinary approach at the centre. It’s a priority for people with endometriosis to obtain improvement in pain, mental health, and quality-of-life. The centre offers workshops, counselling and resources to promote mindfulness strategies to navigate pain. This interdisciplinary approach to care is effective and comprehensive, with incredible results. The team wants to complete an economic analysis of interdisciplinary care for endometriosis, to help newly qualified endometriosis specialists across Canada set up their own interdisciplinary clinics, so that more patients can benefit from this model of care.
3. Lack of awareness
It’s difficult to convey how challenging and isolating it is to live with endometriosis but increased awareness can aid in building community and driving policy changes across Canada. Through fundraising, the Centre for Pelvic Pain & Endometriosis will continue to design accessible, interactive, evidence based online resources for patients, providers and the public.
4. Endo research funding
In the past 20 years, only $7.3 million has been spent on research into endometriosis in Canada, that just $7.30 per person for the 1 million Canadians estimated to be living with the condition. In 2020, BC Women’s Health Foundation released a report called The Research Divide, which highlights what we all know to be true, women’s health research is funded less often, for shorter terms, and for lower funding amounts. We still know very little about how endometriosis develops, how it causes pain, the effects of living with a long term chronic pain condition and the effectiveness of available treatments. Funds raised will go a long way toward research for endometriosis-related projects and finding answers for people with endometriosis.
5. Life-impacting pain
The primary symptom of endometriosis is severe, life-impacting pain. Their pain is real and can take over their life- affecting work, family and social life. Medical experts still don’t entirely understand the condition, the research team at BC Women’s Centre for Pelvic Pain & Endometriosis wants to continue investigating how endometriosis causes pain and improve pain treatments so patients can lead happy, healthy lives.
6. There is no cure
Endometriosis is a multi-organ disease with no cure, and treatment aims to ease symptoms so that it can be not only managed, but in some cases reduced. Endometriosis can be difficult to treat – with funding, the centre wants to understand why some people’s pain doesn’t improve with current treatments and to identify new ways to treat endometriosis.
7. Endometriosis costs $1.8 billion per year to Canadian society
Difficulties accessing effective treatment lead to years of suffering for many people with
endometriosis in Canada, impacting their ability to thrive in life, work and play. We can lose so many people’s valuable contribution to the communities we live in, as studies indicate that the societal cost of endometriosis is around $2 billion dollars every year in Canada. It’s crucial we can identify and evaluate effective treatments for this condition so we can build a society where we all thrive.
