Beliefs and narratives related to the management of chronic pelvic pain in women

Objective

: Women with chronic pelvic pain (CPP) face complex health journeys, but narrative perspectives on CPP treatment are lacking.

Design

: We collected data in English and Spanish from focus groups and individual interviews with stakeholders around women’s CPP.

Setup

: Center for Tertiary Gynecological Care.

patients

: Patients with CPP who self-identify as female/female, community health workers (CHWs), and providers who care for women with CPP.

Interventions

: We conducted focus groups with all 3 types of stakeholders and individual interviews with female patients who have CPP.

Measurements and main results

: Patient participants completed validated condition-specific questionnaires. Deidentified transcripts were coded with NVivo software. We compared patient characteristics and codes between CPP patients who reported and did not report opiate use in the past 90 days. The mean pain score of patient participants was 6/10 ± 2/10, and 14/47 (28%) reported recent opiate use, with no significant differences between patients with and without recent opiate use. Thematic saturation has been achieved. Five major themes emerged: the debilitating nature of CPP, the emotional impacts of CPP, the challenges of CPP interactions in health care, the treatment of CPP, and the value of not feeling alone. Common themes expressed by stakeholders included difficulty discussing chronic pain with others, feelings of inertia in treatment, interest in alternative and less invasive treatments before more involved treatments, and a need for individualized, stepwise, integrated treatment plans. Participants agreed that opioids should be used when other treatments fail, but women who recently used opioids expressed fewer concerns about addiction and positive experiences with opioid efficacy.

Conclusions

: These findings among CPP patients and also among CHWs and providers advocate a shift toward patient-centered care, especially the recognition that each woman experiences pain differently. In addition, stakeholders express a profound need to develop individualized treatment plans.