BRIEF COMMUNICATION  BREVES

Endometriosis in Canada: It Is Time for

Collaboration to Advance Patient-
Oriented, Evidence-Based Policy,
Care, and Research
Kate J. Wahl, MSc;1 Paul J. Yong, MD, PhD;1 Philippa Bridge-Cook, PhD;2
Catherine Allaire, MD1 on behalf of EndoAct Canada *
1
Department of Obstetrics and Gynaecology, University of British Columbia, Vancouver, BC
2
The Endometriosis Network Canada, Toronto, ON

Résumé

L’endome triose est une maladie e nigmatique, douloureuse

K.J. Wahl
Abstract
Endometriosis is an enigmatic, painful, complex disease that
affects approximately 1 million people in Canada. The disease
can involve multiple organ systems, often resulting in debilitating
chronic pain and infertility. Social, medical, geographic, and other
factors are implicated in years-long diagnostic delays and may
limit access to care. An integrated approach from bench to
bedside to community is urgently required. A pan-Canadian
collaboration among patients, clinicians and researchers will
improve endometriosis awareness, provide best practices, and
link research across Canada.
Keywords: endometriosis; community-based participatory
research; patient-centered care; evidence-based medicine; health
services; health policy
Corresponding author: Catherine Allaire, callaire2@cw.bc.ca
* See Acknowledgements.
Disclosures: This work is supported by the University of British
Columbia Office of Community Engagement (CUES_Exp_023).
The authors report potential conflicts of interest outside of this work.
Dr. Allen reports personal fees from AbbVie. Dr. Belland reports
personal fees from AbbVie, Allergan, Bayer, and Olympus and
grants from AbbVie and Allergan. Dr. Kroft reports personal fees
from AbbVie, Allergan, Bayer, and Hologic. Dr. Maksymowicz
reports personal fees from AbbVie and Hologic. Dr. Randle reports
personal fees from Allergan and Hologic. Dr. Singh reports personal
fees and grants from AbbVie and Bayer. Dr. Wessels reports a
licensing agreement and patent PCT/CA2014/000742 pending with
Exeltis. Dr. Yong reports a nonfinancial letter of support from AbbVie
for a grant application currently under review. Dr. Allaire reports
personal fees from AbbVie and Allergan.
All authors have indicated that they meet the journal’s requirements
for authorship.
Received on April 6, 2020
Accepted on May 13, 2020
Available online on June 2, 2020
et complexe qui touche environ 1 million de personnes au
Canada. La maladie peut atteindre de multiples organes. Elle
est souvent source de douleurs chroniques de  bilitantes et
. Des facteurs sociaux, me
d’infertilite  dicaux, geographiques
et autres entrent en compte dans les anne es qu’il faut parfois
pour poser le diagnostic et peuvent limiter l’acce
s aux soins.
Il est urgent de trouver une strate gie integre
e allant du banc
d’essai au chevet a
la communaute  . La collaboration
pancanadienne entre patientes, cliniciens et chercheurs
contribuera a
la sensibilisation a

l’endome triose, indiquera les
pratiques exemplaires et reliera la recherche d’un bout a
l’autre
du pays.
© 2020 The Society of Obstetricians and Gynaecologists of Canada/La
Société des obstétriciens et gynécologues du Canada. Published by
Elsevier Inc. All rights reserved.
J Obstet Gynaecol Can 2021;43(1):88−90
https://doi.org/10.1016/j.jogc.2020.05.009
ndometriosis is a complex disease that affects approx-
E imately 1 million people in Canada. There is neither a
definitive cause nor a known cure for endometriosis. The
variable nature of the disease poses a therapeutic challenge
to both patients and clinicians. Endometriosis also repre-
sents an important societal burden, carrying an estimated
annual cost of $1.8 billion.1 The objectives of this com-
mentary are to offer current perspectives on the problem
of endometriosis in Canada and to propose a collabora-
tive approach to identifying evidence-informed, patient-
oriented solutions.
Those of us with lived experience of endometriosis (P.B.C.,
M.A., L.P.) understand the challenges of having this disease
in Canada, and we are not alone. Every year, The

88  JANUARY JOGC JANVIER 2021


Endometriosis Network Canada, a patient-led, not-for-
profit organization, interacts with thousands of people
who describe diagnostic delays that can exceed 20 years
and lead to progressive physical disability and significant
mental health challenges. Many have had their symp-
toms dismissed by loved ones and health professionals
as “just part of being a woman,” driving them towards
isolation and hopelessness and even leading some to
consider suicide.
After diagnosis, effective treatment is not easy to access for
multiple reasons. Many regions of Canada have few or no
clinicians trained to treat the advanced stages of endome-
triosis or to identify and treat contributors to complex pain
symptoms. Those living in underserviced areas without
resources to travel to visit experts can suffer severe conse-
quences, including debilitating daily pain, or radical surgery
such as hysterectomy, with or without bilateral salpingo-
oophorectomy, at a young age. Geographic inequalities are
not the only issue; Black, Indigenous and people of colour,
LGBTQ2S+ individuals, and members of already margin-
alized groups often face additional barriers to optimal care.
From across Canada, we repeatedly hear about the losses
that result from diagnostic delays and ineffective treatment:
loss of social ties, loss of relationships, loss of jobs, and
loss of the ability to have children.
Clinicians, patients, and patients’ families are keenly aware
of the inadequacies of the current system. Patients often
resort to accessing care in emergency departments and
may see a dozen health care providers before being diag-
nosed.2 At the few Canadian tertiary endometriosis
centres, we struggle to meet the need for timely care, with
wait times between 3 and 9 months for an initial appoint-
ment and up to another 12 months for surgery or interdis-
ciplinary pain care, depending on the site. For some
patients, the challenges of the Canadian system are signifi-
cant enough that they seek care outside of the country.
The utility of history, physical examination, and targeted
imaging for endometriosis has improved greatly but is not
standardized; as such, we are far from realizing an optimal
diagnostic and treatment clinical pathway. We now recog-
nize that the disease is not simply ectopic endometrium
that mimics eutopic endometrium, but rather a complex
disease with heterogeneous symptom expression and phe-
notypes including superficial endometriosis, invasive deep-
infiltrating endometriosis, and ovarian endometriomas.
Given the significant and unique impact of the disease on
the physical and mental well-being of patients, as well as
the potential iatrogenic effects of less than ideal medical
Endometriosis in Canada
care, an interdisciplinary approach and advanced surgical
skill set are required.3−5 Better care and outcomes for
patients with endometriosis hinge on greater understand-
ing of the similarities and differences among phenotypes,
as well as factors affecting individual responses to various
treatments and equitable access to appropriate care.
Researchers are seeking to answer questions about the
dynamics of endometriosis from the cellular to the societal
level. Despite our differences in focus, we agree that bio-
medical, clinical, population health, and health services
research on endometriosis can advance high-quality treat-
ment of this disease. Unfortunately, efforts to advance
endometriosis research in Canada have historically been
siloed and uncoordinated. Moreover, improvements in
care may be stymied by underfunding in this area; a recent
search of the Canadian Institutes of Health Research
Funding Decision Database showed that endometriosis-
related projects received only $7.3 million in the past 20
years—just $7.30 per person estimated to be living with
endometriosis in Canada today.6
Other countries are mobilizing to take action for those liv-
ing with endometriosis. In 2017, the Australian minister of
health apologized for Australia’s historic neglect of people
with the disease. This apology was followed by a National
Action Plan for Endometriosis, with the objectives of
increasing awareness of endometriosis, improving clinical
management and care, and driving research. Similarly, in
the United Kingdom, members of Parliament recently
launched an inquiry to investigate and address the chal-
lenges faced by people with endometriosis.
Like their international counterparts, people with endome-
triosis in Canada deserve to receive the right care in the
right place and at the right time. However, there have been
no policy initiatives to address the suffering of these indi-
viduals. We recognize that several factors may limit capac-
ity for action. As with other women’s health conditions,
general awareness of endometriosis is low, and systemwide
mobilization on any health issue is complicated by shared
federal and provincial responsibilities for health care. We
therefore appreciate new government commitments to
ensure access to reproductive services and to “tackle per-
sistent gaps” in women’s health research.7 Such commit-
ments align with the need we have identified for pan-
Canadian action on endometriosis.
Given the present challenges and opportunities, we have
launched EndoAct Canada: an independent collaboration
of patients, clinicians, and researchers dedicated to
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BRIEF COMMUNICATION  BREVES
catalyzing action on endometriosis, similar to what has been
achieved in countries such as Australia. The specific objectives
of the group are to raise awareness of endometriosis, define
current gaps in care, and partner with health system decision-
makers to generate the knowledge required for evidence-
informed policy.
This approach is centred on the principles of patient-ori-
ented research described by the Canadian Institutes of
Health Research (CIHR).8 A patient-oriented approach
requires that people with lived experience of the disease be
involved in all aspects of the work to ensure that it
addresses relevant priorities and outcomes. The value of
this approach for the endometriosis community is demon-
strated in both the Australian example and recent work
highlighting patient priorities for research in the United
Kingdom and Ireland.9,10 In our collaboration, equal part-
nership is formalized by co-chair positions that are held by
patient and clinician experts. Moreover, a priority for our
work will be to learn from people with endometriosis
about their patient journeys and needs.
According to the CIHR Strategy for Patient-Oriented
Research, patient-oriented work should encompass “the
breadth of clinical settings, health professions/disciplines,
and constituent voices across Canada.”8 In the context of
endometriosis, our collaboration includes people with lived
experience of endometriosis, clinicians who provide care
across various health settings, and researchers seeking to
generate basic and applied knowledge about the disease.
Given regional differences in Canadian health care systems,
geographic diversity is vitally important, and we have
representation from Newfoundland and Labrador, Nova
Scotia, Quebec, Ontario, Manitoba, Saskatchewan, Alberta,
and British Columbia. Because access to care is determined
by intersecting identities and experiences, the success of
this patient-oriented approach will depend on building an
inclusive perspective on endometriosis that reflects
Canada’s multicultural character, geography and unique
governmental structure.
The time has come to make endometriosis a health care
priority in Canada. We believe that bringing together
patients, clinicians, researchers, and other stakeholders will
promote the generation of relevant evidence and its inte-
gration into policy and practice. We are grateful for this
opportunity to introduce our patient-oriented approach to
the Canadian obstetrical and gynaecological community,
and we welcome insight on how to strengthen this
90  JANUARY JOGC JANVIER 2021
endeavour. Together, we can help improve the care and
quality of life of people living with endometriosis in
Canada.
Acknowledgements
The EndoAct Canada authors are Lisa M. Allen, MD,
FRCSC; Michelle Avery; Krisztina Bajzak, MD, FRCSC,
MS; Liane Belland, MD, MSc; Jamie Kroft, MD, MSc,
FRCSC; Nicholas Leyland, MD, MHCM, FRCSC; Sarah
Maheux-Lacroix, MD, FRCSC, MSc, PhD; Anet Maksy-
mowicz, MD, FRCSC; Natasha L. Orr, MSc; Laura Pencer;
Elizabeth Randle, MD, FRCSC; Sukhbir S. Singh, MD,
FRCSC; John A. Thiel, MSc, MD; Jocelyn M. Wessels,
MSc, PhD; and Colleen Miller, PhD. The authors are grate-
ful for the expertise and enthusiasm of new members who
continue to join EndoAct Canada and additionally wish to
thank members Nelly Faghani, PT, MCPA, and Arthur
Leader, MD FRCSC, who offered inspiration and insight
for the commentary.
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