The MUHC Foundation is breaking the silence on endometriosis

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.

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 surgery, fertility, radiology, urology, 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-centred 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 collaborative meetings where doctors across different specialties weigh in and help us offer patients the best treatment strategy. We are proud to offer this 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: