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The authors of a new report on diagnosing and managing endometriosis hope it will help doctors to more quickly recognize and treat the often painful chronic condition, which affects roughly one million people in Canada.

The condition happens when tissue similar to endometrial tissue, which lines the interior of the uterus, is present outside of the uterus, and can lead to the formation of lesions, cysts and other growths. People can suffer for years before receiving a diagnosis, said lead author Catherine Allaire, medical director of the BC Women’s Centre for Pelvic Pain and Endometriosis.

The paper she and her co-authors wrote, published in the CMAJ on Tuesday, provides an overview of the causes and symptoms of endometriosis, and guidelines for diagnosis and treatment.

Growing public awareness of the condition is encouraging patients to seek help earlier, Dr. Allaire said.

“However, we also need to work on the physician side, meaning our colleagues and front-line physicians are able to recognize the symptoms and really have some tools to know where to go next and what to do next.”

Endometriosis affects an estimated 1 in 10 women of reproductive age, and an unknown number of gender-diverse people, the authors wrote. Symptoms can include severe pain during menstruation, chronic pelvic pain, and bowel and bladder problems. About 30 per cent of patients have trouble conceiving.

In Canada, survey data have found about a six-year delay between the time many patients first experience symptoms and when they finally receive an endometriosis diagnosis, said Dr. Allaire, who is also a clinical professor at the University of British Columbia’s Department of Obstetrics and Gynaecology.

Until recently, the condition was poorly recognized and often dismissed, owing to the taboo around discussing issues affecting body parts “below the belt,” she said. There is also the well-documented phenomenon of normalizing women’s pain, so the health care system can sometimes brush off those who suffer from it, she added. However this has begun to change thanks to advocacy, including from celebrities who have publicly discussed their own experiences of endometriosis, such as Padma Lakshmi and Susan Sarandon.

In the paper, the authors explain that the most accepted theory about its cause is related to what’s called retrograde menstruation. This is a normal phenomenon that occurs in most people with uteruses, whereby some endometrial cells move from the uterus through the Fallopian tubes into the abdomen. Normally, these cells are cleared away. But it’s believed that in the most common type of endometriosis, changes occur, either at the cellular level or in the environment, that allow the implantation and growth of these endometrial-like cells, Dr. Allaire said.

Diagnosis has mainly been done through laparoscopy, a surgical procedure that involves inserting an instrument called a laparoscope through a small incision in the abdomen. But recent guidelines call for non-surgical diagnosis, based on symptoms and the findings of physical exams and imaging, such as transvaginal ultrasound, the authors said. This helps reduce delays to starting treatment, they added.

The authors provided details on treatment options, including hormonal suppression, surgery or a combination of both, and for patients with complex pain, a multidisciplinary approach that can include pain education, pelvic physiotherapy and psychological interventions such as cognitive behavioural therapy.

Philippa Bridge-Cook, board chair of the charity the Endometriosis Network Canada, said besides spreading knowledge among patients and doctors, there’s still a need to increase awareness about the disease among employers and policy makers. Employers should understand the need for potential work accommodations, she said, adding that endometriosis is not formally recognized as a disability, although it can be disabling for some people.

Her charity has also co-founded an organization called EndoAct, which is calling on policy makers to help develop a national action plan for endometriosis that would include funding research and improving access to specialized surgeries.

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