The first worldwide study of the societal impact of endometriosis has found a significant loss of work productivity among those women who suffer from the condition, a researcher told the 26th annual meeting of the European Society of Human Reproduction and Embryology today (Monday). Dr. Kelechi Nnoaham, from the Department of Public Health, University of Oxford, UK, said that the results of this multi-centre study would help highlight the previously unrecognised plight of an estimated 176 million women around the world whose lives are affected by endometriosis.
Endometriosis is a painful inflammatory disease that, for many women, is chronic during their reproductive years. The inflammation occurs in cells similar to the endometrial cells of the uterus, which are found primarily in the pelvic cavity, on pelvic organs, and also on the bowel, bladder and (rarely) in the lungs.
Dr. Nnoaham and colleagues recruited 1459 women aged 18-45 from 14 participating centres in ten countries across five continents to the Global Study of Women's Health (GSWH). The women were all scheduled to undergo a laparoscopy because of symptoms suggestive of endometriosis. Women who had been previously diagnosed with endometriosis were excluded. The participants were asked to complete a comprehensive questionnaire about their symptoms and the impact these had on their lives. After surgical diagnosis the questionnaires were analysed according to whether the women had been diagnosed with endometriosis or other conditions. Those not diagnosed with endometriosis acted as controls.
"Scientists already know that women with chronic pelvic pain report a lower quality of life. But the GSWH is the first study to assess whether women with endometriosis-related pelvic pain are affected differently than those with pelvic pain from other or no identifiable causes, which our study confirmed is indeed the case," said Dr. Nnoaham. "Our research is the first ever prospective study to be undertaken in the field of endometriosis to assess the impact of the disease."
The researchers found that there were substantial differences between those with endometriosis and controls. "Loss of work productivity among employed women with endometriosis averaged ten hours per week, versus seven hours per week with those who had other disorders," said Dr. Nnoaham, "and this was primarily due to reduced productivity rather than absence from work. Non-work related activities, such as housework, exercising, studying, shopping and childcare were also significantly impaired by the painful symptoms of the condition.
"Through its symptoms, endometriosis impairs quality of life in all the areas covered by the Short Form (36) Health Survey (SF-36), a standard tool for measuring health-related quality of life, except for physical functioning and mental health. As symptoms become more severe, quality of life worsens," said Dr. Nnoaham.
The researchers also noted a diagnostic delay of seven years from when women first presented to their primary physicians with symptoms until they were diagnosed - clocking up an average of 6.7 consultations before referral to a specialist.
"Our results raise a lot of research questions," said Dr. Krina Zondervan, genetic epidemiologist and senior scientist at the Wellcome Trust Centre for Human Genetics, who was the principal investigator on the study. "For example, why does endometriosis affect different women in a different way? Does the impact of symptoms change after a diagnosis is made? More importantly, we can build on these findings to look at how a woman's experience of the diagnostic and treatment process can be improved. The data registries resulting from the GSWH will serve as a repository for ongoing and future studies, as well as for biological investigations into the origins of endometriosis and diagnostic markers for it."
"We hope that our study will underline the need for raising awareness, reducing time to diagnosis, improving care, and increasing funding for research into finding better treatments for this distressing condition," Dr. Nnoaham concluded.
European Society of Human Reproduction and Embryology