Real-world characteristics of women with endometriosis-related pain entering a multidisciplinary endometriosis program

Abstract

Background Women with endometriosis are commonly treated by their sole provider. In this single-provider model of care, women frequently report long diagnostic delays, unresolved pelvic pain, multiple laparoscopic surgeries, sequential consultations with numerous providers, and an overall dissatisfaction with care. The emergence of multidisciplinary endometriosis centers aims to reduce diagnostic delays, improve pain management, and promote patient satisfaction; however, baseline data at the time of presentation to a multidisciplinary center are lacking. Methods A real-world, retrospective, single-site, cross-sectional study of women with surgically confirmed and/or clinically diagnosed endometriosis generated baseline data for a planned longitudinal assessment of multidisciplinary care of endometriosis. The primary objective was to determine the proportion of patients experiencing mild, moderate, or severe pain for dysmenorrhea, non-menstrual pelvic pain (NMPP), and dyspareunia at entry into a multidisciplinary endometriosis clinic. Also explored were relationships between pain scores and clinical endpoints obtained from electronic medical records. Results More than half (59%) of the study participants (n = 638) reported experiencing pelvic pain for ≥ 5 years. Pain intensity was highest for patients reporting dysmenorrhea, followed by NMPP, and dyspareunia. Significant correlations were observed between total pelvic pain and patient age (r = –0.22, p < 0.001, n = 506) and number of previous healthcare providers (r = 0.16, p = 0.006, n = 292); number of previous providers and duration of pain (r = 0.21, p = < 0.0001, n = 279); and duration of pain and years since diagnosis (r = 0.60, p < 0.001, n = 302). Mean pain scores differed significantly by age group for dysmenorrhea (p < 0.001), NMPP (p = 0.005), and total pelvic pain (p < 0.001), but not for dyspareunia (p = 0.06), with the highest mean pain scores reported among those < 30 years of age. Conclusion These real-world data indicate that in the single-provider model of care, unresolved pelvic pain is common among women with endometriosis. Alternative care models, including a multidisciplinary approach, need to be evaluated for improvements in clinical outcomes. These data also highlight the importance of addressing NMPP, which may be particularly troublesome for patients.

A single‐blind, randomized, pilot study of a brief mindfulness‐based intervention for the endometriosis‐related pain management

“…Endometriosis is a heterogeneous gynaecological disease characterized by endometrial glands and stroma outside the uterine cavity, associated with immunologic, genetic, hormonal and environmental factors (Koninckx et al, 2019). It affects from 6% to 10% of reproductive age women and leads to infertility and pelvic pain (Agarwal et al, 2021). Pain can manifest through different symptoms such as dysuria, dyschezia, dyspareunia, dysmenorrhoea or non‐cyclical, negatively impacting women's quality of life (Qol) (Facchin et al, 2018).…”

“…However, the pain remains in 5%-59% of women, whilst 11%-19% do not show pain relief with standard medical care (SMC) (Becker et al, 2017). Despite the lack of improvement in a significant number of women and the recognized need for a biopsychosocial perspective (Carey et al, 2014), few conservative treatments have been investigated (Agarwal et al, 2021).…”

Lessons from implementing the Australian National Action Plan for Endometriosis

“…The prevailing model of endometriosis care in Australia reflects this westernised biomedical approach, with a single provider caring for a person living with the disease. The solo-provider model has been associated with persisting symptoms, long delays in diagnosis, repeated surgeries and low care satisfaction ( Agarwal et al 2021 ). As few as 24% of Australian women with endometriosis are satisfied with the management of their condition, with barriers to accessing interdisciplinary care that addresses functioning beyond infertility and pain one of the main reasons for dissatisfaction ( Evans et al 2021 ).…”

A critical appraisal of the circulating levels of differentially expressed microRNA in endometriosis

“…On average a definitive diagnosis is typically achieved by laparoscopy 5.4–12 years after the onset of symptoms [ 4–6 ]. Laparoscopy remains the gold standard for diagnosis, and women with endometriosis can expect to undergo multiple diagnostic and operative laparoscopies over the course of their disease [ 7 , 8 ]. Diagnostic delay, cost, surgical risk, and poor correlation between symptoms and extent of disease are the basis for arguments to shift from surgical to clinical diagnosis [ 9 , 10 ].…”