Beliefs and Narratives Associated with the Treatment of Chronic Pelvic Pain in Women.

STUDY OBJECTIVE

Female patients with chronic pelvic pain (CPP) face complicated healthcare journeys, but narrative perspectives on CPP treatment are lacking.

DESIGN

We collected data in English and Spanish from discussion groups and individual interviews with stakeholders around female CPP.

SETTING

A tertiary care center for gynecologic care.

PATIENTS

Patients with CPP who self-identified as women/female, community healthcare workers, and providers who care for women with CPP.

INTERVENTIONS

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

MEASUREMENTS AND MAIN RESULTS

Patient participants completed condition specific validated questionnaires. De-identified transcripts were coded with NVivo software. We contrasted patient characteristics and codes between patients with CPP who did and did not report opioid use in the last 90 days. The mean pain score of patient participants was 6/10 ± 2/10, and 14 of 47 (28%) reported recent opioid use, without significant differences between patients with and without recent opioid use. Thematic saturation was achieved. Five main themes emerged: the debilitating nature of CPP, emotional impacts of CPP, challenges in CPP healthcare interactions, treatment for CPP, and the value of not feeling alone. Common threads voiced by stakeholders included difficulty discussing chronic pain with others, a sense of inertia in treatment, interest in alternative and less invasive treatments before more involved treatments, and the need for individualized, stepwise, integrated treatment plans. Participants agreed that opioids should be used when other treatments fail, but women recently using opioids voiced fewer concerns about addiction and positive experiences with opioid efficacy.

CONCLUSIONS

These findings among female patients with CPP and also among community healthcare workers and providers advocate for a move toward patient-centered care, particularly the acknowledgment that every woman experiences pain in a singular way. Furthermore, stakeholders voice a deep need for development of individualized treatment plans.