Endometriosis is a chronic and debilitating inflammatory condition that affects one in every ten women and gender-diverse individuals, yet it remains one of the most underdiagnosed conditions. Characterized by abnormal growth of endometrial-like tissue outside the uterus, it invades other organs, leading to pain, infertility, ovarian cysts, and in extreme cases even bowel obstruction or kidney failure, which many silently endure. This condition highlights a critical gap in health care—reminding us that despite women being half the population, they are underrepresented in medical research. The McGill University Health Centre (MUHC) Foundation is committed to bridging this gap by raising funds for women’s health priorities, including supporting the MUHC’s Department of Obstetrics and Gynecology, led by Dr. Togas Tulandi.

“While almost half of women who experience infertility and up to 70 per cent of those with chronic pelvic pain have endometriosis, studies show an average delay of seven years from the start of symptoms to diagnosis,” explains Dr. Tulandi.

For many, these numbers are hard to grapple with. How can the suffering of such a large fraction of our population be dismissed for so long? In an effort to make up for lost time, the MUHC Foundation is supporting Quebec’s first multidisciplinary referral centre for complex endometriosis, known as the Endometriosis Centre for the Advancement of Research and Surgery (EndoCARES).

EndoCARES, led by co-directors Drs. Dong Bach Nguyen and Andrew Zakhari, brings together a multidisciplinary team of experts in minimally invasive gynecologic surgery, fertility, radiology, colorectal surgery, urology, thoracic surgery, and pathology all united by a common goal: to provide the highest standard of care to patients with multisystem endometriosis and push research forward to better understand this challenging condition.

“In recent years, thanks to the media and patient and physician advocacy, the public’s attention is turning more and more towards neglected areas such as women’s health and endometriosis, which makes it an exciting time to be developing EndoCARES. I believe our commitment to patient-centered care and our multidisciplinary approach exemplify the highest standards of care for endometriosis, which is something we are very proud to offer in Quebec.” shares Dr. Nguyen.

Dr. Nguyen and Dr. Zakhari both pursued training at renowned endometriosis hubs in Europe after completing minimally invasive surgery fellowships in Ottawa and Toronto respectively. As a result, patients treated at EndoCARES now benefit from innovative surgeries specific to endometriosis not previously offered in Quebec.

“In Europe, several countries have established centres of excellence to provide specialized care to patients affected by endometriosis. Training in these centres allowed us to bring back not only new surgical techniques, but also the foundations to build a world-class endometriosis referral centre for women with multi-organ endometriosis at the MUHC,” explains Dr. Nguyen.

The primary objective of this centre is to provide women with severe, multisystem endometriosis affecting other organs like ovaries, intestines, kidneys, or even the lungs, with personalized care that includes medical options but also dedicated surgical strategies guided by radiological expertise.

“Multisystem endometriosis can cause serious complications, ranging from infertility to chronic pain and organ damage—underscoring the urgency of a comprehensive, targeted program like EndoCARES,” explains Dr. Zakhari.

Along with Drs. Srinivasan Krishnamurthy, Fady Mansour, Jessica Papillon-Smith and Togas Tulandi, this team of surgical gynecologists is committed to improving the care of women suffering from endometriosis. In just its first year, EndoCARES has already made remarkable strides, marking a new era in the fight against this largely misunderstood condition.

“Although hundreds of patients with deeply infiltrating endometriosis have already been seen at EndoCARES, the waitlist continues to grow. At their first visit, patients complete questionnaires to help us better understand their symptoms and their priorities and, if needed, a dynamic endometriosis ultrasound is performed the very same day. Complex cases are discussed at team meetings called Endoboards where doctors from all different specialties weigh in and help us offer patients the best treatment strategy. We are proud to offer this streamlined and comprehensive multidisciplinary approach which we believe gives patients the best care possible,” shares Dr. Nguyen

At the MUHC’s EndoCARES clinic, equity and people-first care are some of their core principles—the team recognizes that a complex condition, especially one that has been historically overlooked, requires a dedicated, holistic approach to care. Melissa Lam Shang Leen, a Nurse Navigator who joined the program in February 2024, has been crucial in guiding patients through their treatment journey, offering support and ensuring continuity of care:

“I love my job because I get to witness firsthand the relief on these women’s faces when they realize that someone is finally listening to them. Many of them spend years trying to find a diagnosis, validation, and ultimately appropriate care, and in EndoCARES we are privileged to offer them just that,” shares Lam Shang Leen.

EndoCARES is exciting because it is about more than patient care; it is about the future of women’s health. Thanks to support from the MUHC Foundation, the team has been making incredible strides in women’s health research—like developing an innovative research database and tissue biobank, a crucial platform that will deepen our understanding of how endometriosis develops and responds to certain therapies. They are already exploring novel treatment that could potentially shrink ovarian endometriomas—lesions on the ovaries caused by the disease.

The impact of EndoCARES extends beyond the clinic and laboratory. In November 2023, Co-Directors Dr. Bach Nguyen and Dr. Andrew Zakhari were invited to speak at the House of Commons Standing Committee on Health in Ottawa.

“It was an honour to speak at the House of Commons about EndoCARES, because not only is it a project that means so much to so many of us, but it signals a long-awaited shift in public awareness. Our big dream is to educate and gain widespread support for a national action plan like we see in France and Australia where expert centers have ministry of health backing for the resources needed to provide care like better access to imaging, pelvic physiotherapy, and most importantly operating room time for the countless patients in need of surgery,” says Dr. Zakhari.

The EndoCARES team has a strong and ambitious vision for the future. Over the next 12 months, they hope to expand their services to include pelvic physiotherapy, nutrition counseling, and psychological support—essential components of comprehensive care for women with endometriosis, enhancing the program’s ability to address the full spectrum of patient needs.

The work being done at EndoCARES is nothing short of transformative, and it could offer a model of care that could serve as an example for other medical centres around Canada and the world.

“The MUHC Foundation is proud to support the life-changing work being done by EndoCARES. It shows us what we can accomplish when we educate, innovate, and work together to build a world where health care is more inclusive and accessible to all. The EndoCARES team is made up of changemakers who are positioning Quebec as leaders in women’s health,” shares Marie-Hélène Laramée, President and CEO of the MUHC Foundation.

As awareness of endometriosis grows, so too does the potential for better diagnosis, treatment, and, ultimately, a cure for this challenging disease.

Join the MUHC Foundation in raising much-needed funds for EndoCARES. Help Drs. Dong Bach Nguyen and Andrew Zakhari make a difference in the lives of women and people living with endometriosis by donating today: https://muhcf.akaraisin.com/ui/pledge/p/ENDOCARES2024

The MUHC Foundation is accredited by Imagine Canada for excellence in non-profit accountability, transparency and governance.  https://muhcfoundation.com