Beliefs and Experiences of People in Australia Living With Chronic Pelvic Pain, and Associations Between Their Illness Perceptions and Pain

BACKGROUND: There are gaps in understanding females' beliefs related to chronic pelvic pain. Beliefs might be linked to illness perceptions and behaviours. AIMS: (1) Explore beliefs and experiences of Australian females living with chronic pelvic pain, against categories based on clinical guidelines. (2) Explore associations between illness perceptions and pain experience (severity and interference). MATERIALS AND METHODS: A community-based, online cross-sectional study targeting women with chronic pelvic pain in Australia (n = 465) was performed. Data collected included participant beliefs and experiences related to diagnosis, healthcare practitioner interactions, assessments undertaken and management. Associations were assessed between illness perceptions and separately for pain severity and pain interference. RESULTS: 64.3% experienced pain before 18 years of age, but only 36.4% first sought help before 18. Of those seen by a healthcare practitioner, 42.9% felt their pain was not validated and 45.6% were not asked about their personal beliefs regarding the cause of their pain. Of those consenting to answer sexual abuse questions, only 25.6% reported having been screened by healthcare practitioners for a history of sexual abuse. Controlling for confounders, more threatening illness perceptions were associated with higher pain severity (coefficient 0.07 (95% confidence interval 0.05 to 0.09), p < 0.001) and higher pain interference (coefficient 0.15 (95% confidence interval 0.12 to 0.18), p < 0.001). CONCLUSION: Participants with chronic pelvic pain reported delayed care seeking during adolescence, a lack of validation by healthcare practitioners when seeking care and suboptimal screening of sexual abuse. These issues contradict guideline-based recommendations, might negatively impact illness perceptions, which could contribute to increased burden.