The pain and daily consequences of living with endometriosis: a qualitative online survey of women in China, France and Russia

Purpose: Endometriosis, a costly public health problem that is painful and impacts daily living and fertility, is poorly understood and managed. This study aimed to understand the impact of endometriosis on women from three culturally and economically differing regions (China, France and Russia). Methods: A 16-part questionnaire, administered to women aged 18-50 years, examined knowledge of endometriosis, diagnosis, and impact on activities of daily living. Results: 2002 Chinese, 4001 French and 2005 Russian women completed the survey. Ninety percent of respondents had heard of endometriosis in China, 61% in Russia and 54% in France. Questioning about family history was low in France and Russia. Most women were diagnosed within five years; although 15% of French women waited > 10 years for diagnosis. The numbers of women diagnosed with the different types of endometriosis were similar in China and Russia, respectively: 84% and 77% with superficial endometriosis; 22% and 23% with endometrioma; and 1% and 2% with deep infiltrating endometriosis (DIE); French women had a higher incidence of endometriomas (41%) and DIE (16%), with only 46% reporting superficial endometriosis. Most women received endometriosis treatment, although it varied by country. All women reported difficulties discussing endometriosis. Reasons included the feeling that it is normal to have pain during periods; >50% reported an impact on well-being, physical condition, morale and sex life. Conclusions: This survey highlights important national differences in endometriosis awareness, perceptions and management, and reminds us that it may not be clinically meaningful to extrapolate data from one country to another.