Female Perspectives on Endometriosis: Findings from the Uterine Bleeding and Pain Women'S Research Study

Abstract

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.

Prevalence and Symptomatic Burden of Diagnosed Endometriosis in the United States: National Estimates from a Cross-Sectional Survey of 59,411 Women

“…Our survey captured a broadly representative patient sample, as opposed to specific sub-populations that might be receiving treatment for severe disease, experiencing specific endometriosis-related symptoms, or screened for surgery in a gynecology practice. Our results agree with the DE prevalence estimate of 6.6% for the US population reported by Bernuit et al [15] , who used a similar survey methodology. However, it is possible that 6.1% is an overestimation of overall DE prevalence because our study included women with a surgical diagnosis as well as women with presumptive endometriosis.…”

“…Recent data from the United States suggest that the prevalence of endometriosis ranges from 6.6 to 16.2% [15] . However, consensus estimates in the United States have not been definitively established.…”

The Impact of Endometriosis Symptoms on Health Related Quality of Life and Work Productivity in Egypt

“…Pain is consistently reported as a central and destructive feature of life with endometriosis and several studies report a negative correlation between pain and QoL Sepulcri et al [24], Nnoaham et al [18], Souza et al [25], Tripoli et al [23]. Endometriosis symptoms, and specifically pain, have a detrimental impact on daily life and physical functioning (e.g.…”

“…There were 17 papers (14 quantitative and 3 qualitative) which reported findings relating to the impact of endometriosis on QoL [23], and one study demonstrated that a minority of women consider themselves to have a current state of health 'worse than death' Simoens S et al [7].…”

Endometriosis and Perceived Stress: Impact of Surgical and Medical Treatment

“…Indeed, endometriosis has a crucial impact on daily life and physical functioning (e.g. sleeping, eating and moving) [3,4,5], and the associated reduced energy and vitality [4] have a negative impact on social and sexual life [6,7,8,9]. There is no definitive treatment for endometriosis, either surgical or medical, and the main goal of management is to relieve symptoms by removing endometriotic lesions and/or limit the consequences of their growth [10].…”