In Canada, women with endometriosis often experience a delay of more than five years to get diagnosed, a large study reports.
The prevalence of endometriosis in women of reproductive age is often quoted as being 10%, but global estimates point to an increased variability, ranging from 2% to 45%. In the case of infertile women, the range is from 2% to 77%.
The differences in these estimates may be due to the variability of the women analyzed, disease definition, and diagnostic methods. Furthermore, as these estimates are often based on studies with women who were hospitalized or undergoing surgery, they may not represent the prevalence among the general female population.
The time between symptom onset and diagnosis of endometriosis is often delayed, which can increase the burden, and decrease productivity and health-related quality of life for these women. This delay can be from four to 11 years, according to global estimates. Similarities between endometriosis and related pelvic-abdominal pain symptoms and other chronic pain conditions can also make it hard to diagnose the illness.
The diagnosis of endometriosis relies on a surgical procedure called laparoscopy — a method that involves a small incision to the abdomen to insert a fiber-optic instrument to look into organs — and tissue analysis.
In Canada, non-surgical methods have become more common only recently. Moreover, information is lacking about the prevalence of endometriosis, symptom burden, and diagnostic experience.
In this study, researchers set out to estimate the prevalence of self-reported diagnosis of endometriosis from women in Canada, to assess their diagnostic experience — methods for the diagnosis, physician’s specialty, and time to diagnosis — and to compare their symptoms with those in women without endometriosis.
They collected data from an online survey of 30,000 women, ages 18 to 49, in Canada.
The survey contained two parts: the first part included questions on demographics, whether they had received an endometriosis diagnosis, the diagnosis method, and their symptom experience. Symptoms experienced in the past and currently (within four weeks before the survey) were included, as well as symptom severity.
The second part included questions on diagnostic experience, treatment patterns, health-related quality of life, health-related productivity losses, and healthcare resource use.
A total of 2,004 women (7.0%) reported receiving a diagnosis of endometriosis. Extrapolating this result to the Canadian population gives an estimate of 516,327 women in Canada, in the age range of 18 to 49 years, with a self-reported diagnosis of endometriosis. The average age at the time of diagnosis was 27.9 years. Nearly half (47.5%) of women with diagnosed endometriosis were 18 to 29.
The majority (84.1%) experienced symptoms prior to diagnosis. More women with diagnosed endometriosis, compared to those without it, experienced menstrual pelvic pain or cramping (70.3% vs. 50.7%), non-menstrual pelvic pain or cramping (49.5% vs. 18.7%), difficult or painful intercourse (52.5% vs. 28.0%), and infertility (22.3% vs. 6.3%).
Furthermore, women with diagnosed endometriosis were more likely to have severe symptoms compared to the other women. For example, 37.3% of them experienced severe menstrual pelvic pain or cramping in the four weeks before the survey compared with 17.6% of the women without endometriosis.
The women with endometriosis reported an average 5.4 years’ delay in diagnosis following the onset of symptoms. This included a 3.1-year delay from symptom onset to physician consultation, and a 2.3-year delay from physician consultation to diagnosis. About a third of these women (30.8%) reported that diagnosis was performed via surgical methods, and 32.7% had been diagnosed using empirical methods. More than half (56.4%) were diagnosed using physician-suspected diagnostic methods.
Overall, the findings of this large study “indicate that further research is needed to examine the impact of symptomatic burden on women’s health-related quality of life and to establish the direct and indirect costs of endometriosis in Canada,” the researchers wrote.
“Future studies are required to ascertain factors contributing to diagnostic delay and to identify steps to reduce time to diagnosis,” they said.