The McGill University Health Centre (MUHC) is proud to launch Quebec’s first multidisciplinary referral centre for multisystem endometriosis. EndoCARES, or the Endometriosis Centre for the Advancement of REsearch and Surgery, aims to provide patients suffering from pain and infertility due to endometriosis with timely access to specialized diagnostic imaging, followed by multidisciplinary care based on individual needs.
Endometriosis is an inflammatory condition where endometrial-like tissue (similar to the inner lining of the uterus) grows outside of the uterus. Affecting about 1 in 10 women of reproductive age, it commonly causes infertility and debilitating pelvic pain, often severe enough to limit a woman’ s ability to carry out normal daily activities.
“While half of women with 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. Togas Tulandi, chief of the Department of Obstetrics and Gynecology at the MUHC. “EndoCARES aims to significantly reduce this delay by uniting a team of gynecologic surgeons specialized in minimally invasive surgery – more specifically, in the removal of endometriosis lesions – along with other specialists, such as bowel surgeons, urologists, radiologists and fertility specialists, in a single patient-centered clinic.”
EndoCARES specialists come together regularly to discuss complex surgical cases and devise the best treatment strategies to offer patients. Meanwhile, a dedicated nursing staff provides continuity of care for the patients by facilitating the coordination of care between specialists and monitoring post-operative recovery following complex surgeries.
A centre of excellence
Drs. Dong Bach Nguyen and Andrew Zakhari, co-directors of the centre, both pursued additional 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 an endometriosis referral centre for women with multi-organ endometriosis in Quebec,” explains Dr. Nguyen.
“The primary objective of this centre is to provide women with severe endometriosis affecting other organs like the bladder,bowel or diaphragm, with dedicated surgical and radiological expertise,” says 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 Quebec women suffering from endometriosis.
Many questions remain unanswered
“Today, we still do not understand the exact cause of endometriosis, nor do we have a cure,” explains Dr. Tulandi, who is also an associate investigator at the Child Health and Human Development Program at the Research Institute of the MUHC.
Moving forward, EndoCARES aims to enhance basic, epidemiological and clinical research in endometriosis with the establishment of a patient registry that will function as a database for future research. Additionally, the program will facilitate international networking, collaborative research and the standardization of clinical practice through the exchange of ideas and experiences.
EndoCARES’ state-of-the-art clinical care and forthcoming research are made possible in part by generous donations made to the MUHC Foundation, which has pledged to raise $700,000 in support of personnel and equipment for the EndoCARES program.
“Endometriosis is very common and yet, so many women endure years of pain before receiving a diagnosis. This is completely unacceptable. The MUHC Foundation is proud to support the EndoCARES program, because it will change women’s health care for the better and reduce the pain and uncertainty so many women endure,” says Julie Quenneville, president and CEO of the MUHC Foundation.
Someone to reach out to
It took five long years before Anisa Gjoka was referred to Dr. Andrew Zakhari and diagnosed with stage 4 endometriosis at 25 years old. “On February 8, 2021, in the middle of a pandemic, I finally had my surgery,” recounts Anisa. “After a four-hour surgery, and with only four small incisions, they were able to carefully remove the endometriosis lesions, leaving all of my organs intact!”
Today, at 28 years old, Anisa maintains a pain-free lifestyle, something that seemed unimaginable before entering under the expert care of Dr. Zakhari. “It gives me great peace of mind to know that EndoCARES exists – that there is finally someone for me to reach out to whenever I’m in need, and that the young women experiencing their first symptoms will be spared years of suffering and will be cared for by a multidisciplinary team of experts, all in one place.”