The BC Women’s Centre for Pelvic Pain & Endometriosis and BC Women’s Hospital + Health Centre strive for better health and improved quality of life for people living with endometriosis. The experienced interdisciplinary team provides patients with a range of care, including physiotherapy, clinical counselling, and pain education workshops alongside standard gynecologic care. They also undertake research to advance the knowledge of and treatment options for endometriosis.
Dr. Catherine Allaire, Medical Director, spoke to WHRI about endometriosis in honour of Endometriosis Awareness Month, a global initiative which aims to shed light on a disease that affects approximately 176 million people worldwide.
What is endometriosis?
Endometriosis is a chronic condition where the cells that line the uterus are found implanted outside the uterus usually in the pelvic cavity, on the ovaries, the peritoneum (lining of the uterus), the uterus, but also on the bowel, bladder and fallopian tubes and rarely on distant sites throughout the body. These endometrial-type cells (which are why the condition is called endometriosis) respond to estrogen and create an inflammatory process that can cause pelvic pain symptoms as well as infertility. It is estimated that 1/10 women of reproductive age have endometriosis and the condition can have a tremendous impact on quality of life.
What have we learned recently about this disease and how to treat it?
There has been an exponential rise in the number of publications about endometriosis over the last decade. Finally some good research is being done on this condition and we have made some recent strides in understanding its cause. For example, Dr. Paul Yong from our centre, in collaboration with OvCare at the BC Cancer Agency, recently discovered a gene mutation called KRAS that is associated with an invasive type of endometriosis. (NEJM May 2017)
We know that there is a great delay for women with endometriosis to get diagnosed and treated. Women suffer with severe menstrual cramps (the most common symptom), ovulation pain, pain with sexual activity, and possibly even painful bowel movements an average of 7 years before being diagnosed. We have to do a better job of increasing awareness among the medical community and the public to consider this diagnosis earlier and treat it appropriately to prevent possible progression to chronic pelvic pain. Though surgery is still the gold standard for diagnosis, we have changed our approach over the years to emphasize early empiric medical management and reserve surgery for the right time, the right reason and by the right surgeon.
As the Medical Director for the Centre for Pelvic Pain and Endometriosis what is your clinical approach to treating endometriosis?
We are a tertiary centre so many times the patients referred to us have already been diagnosed and are not doing well with standard management. There are 2 main reasons we find for this.
- Some patients have undiagnosed or incompletely removed deeply infiltrating endometriosis. At the BCWH clinic we perform a thorough clinical exam and use bedside ultrasound to look for signs of deep endometriosis. All the gynecologists working at the clinic have advanced laparoscopic surgical skills and are able to perform complete excisional surgeries for all stages of endometriosis.
- Some patients have developed a chronic pain syndrome or central sensitivity syndrome. They may have co-existing conditions such as irritable bowel syndrome, painful bladder syndrome, pelvic floor muscle tension, trigger points, anxiety, and catastrophizing. These patients benefit from the multi-modal interdisciplinary approach we offer at the BCWH with the help of our nurse, physiotherapist and counsellor.
You have a very active research program. How has this research impacted your clinical practice?
The majority of our research projects and findings have been derived from our Endometriosis Data Registry. All our incoming patients are invited to participate in this data collection and most agree, so we have over 3000 patients registered at this point. They fill out extensive questionnaires at intake, the doctors also enter their clinical findings and plan, surgical findings, pathology and we send out follow-up questionnaires at 1, 3 and 5 years. We have been able to validate our model of care by looking at the one-year results and were pleased to find that our patients were definitely doing better, with less pain, better quality of life and less health care utilization (AJOG Jan 2018). This was tremendously affirming and gives ammunition to our colleagues across the country (and the world) to lobby their health authorities/government to financially support an interdisciplinary model of care for their patients.
You recently had an event for Endometriosis Awareness Month called the Celebration of Hope. What was this event about?
This is the second time we have had this event and will probably do it annually going forward. All our patients with endometriosis are invited to hear a distinguished guest speaker (this year it was Dr. Suzie As-Sanie from University of Michigan), and members of our team present our most recent research findings. The talks were followed by a Mix and Mingle with delicious food and refreshments which allowed the patients to chat with us and each other, thus helping foster networks.
What inspired you to create this event and to include patients?
The main purpose was to share-back our research results with our patients. They are our partners in this ongoing research project and we could not do this without them. This is one way to thank them and keep them engaged at the same time. The other purpose is to create awareness about endometriosis through social media, and the press. We had a patient advocate who shared her story in a very compelling video. We also hope that increased awareness may lead to increased financial support for research on endometriosis.
Awareness days/weeks/months are great opportunities for knowledge translation. What would you say to other research teams considering events like the Celebration of Hope to disseminate their findings with a public audience?
Try it! Through knowledge translation events such as this, we can increase awareness for a particular condition or issue and also give back to the community. It’s a win-win.