Female perspectives on endometriosis: findings from the uterine bleeding and pain women's research study

Purpose: The symptoms of endometriosis are heterogeneous and overlap with those of other conditions, resulting in misdiagnoses and/or delayed diagnosis and treatment. The Uterine Bleeding and Pain Women's Research Study (UBP-WRS) collected data to elucidate differences in diagnoses and treatment experiences of women, and to assess the impact of endometriosis on their quality of life. Methods: The UBP-WRS interviewed women aged 15 to 49 in eight countries using an online methodology. Quotas were applied for the age, region, level of education, and income of respondents. Questions assessed menstruation, diagnoses of endometriosis or other gynecological conditions (e.g., uterine fibroids), symptoms, impact on life, and perceptions of treatments. Results: Of the total of 21 749 women, 2.7% reported surgically diagnosed endometriosis, 2.4% reported nonsurgically diagnosed endometriosis, 5.5% had physician-suspected endometriosis, and 6.2% reported symptoms indicative of endometriosis but no diagnosis. Prevalence of the different diagnoses was comparable between countries. Mean age at diagnosis was 28 years and estimated time-to-diagnosis was 6.1 years. Pain symptoms were generally more common and severe in women with diagnosed endometriosis than in those with suspected disease, whereas the reverse was true for their quality-of-life. Of women receiving treatment for diagnosed endometriosis, 60% were satisfied and 40% were dissatisfied with efficacy. However, 29% of women with diagnosed endometriosis were not receiving any treatment. Conclusions: Approximately 17% of women in the UBP-WRS reported diagnosed, suspected or symptoms of endometriosis; this is comparable to previously published studies. The UBP-WRS among the largest surveys of its kind -may help to improve understanding of this enigmatic disease and guide therapeutic practices.