Losing All Faith in Women’s Healthcare: Experiences of Living with Chronic Pelvic Pain After Pelvic Congestion Syndrome Treatment

Objectives: The purpose of this study was to describe the experiences of women with pelvic congestion syndrome (PCS). We aimed to (1) explore the experiences before receiving a PCS diagnosis, (2) describe the experience of being diagnosed and living with PCS, and (3) identify challenges with ongoing pelvic pain after PCS treatment. Method: A descriptive qualitative design with a purposive sampling method was used. Women with PCS were recruited from a Facebook PCS support group between October 2023 and February 2024. Participants completed a demographic survey, then participated in a semi-structured interview via Zoom. Data were transcribed verbatim and verified for accuracy. A modified iterative seven-step descriptive data analysis method was used to examine data, compare codes, challenge patterns, and inductively and deductively develop themes. Results: Nine women completed the study. Six essential themes characterized the experience of living with CPP after treatment for PCS: (1) life before diagnosis ; (2) diagnosis journey ; (3) pain descriptors and co-occurring symptoms ; (4) impaired quality of life ; (5) being a burden to family and friends ; and (6) losing all faith in women’s healthcare and the system . Conclusions: This was the first qualitative study of women with ongoing and recurring pelvic pain after treatment for PCS. Findings highlighted the significant challenges women faced even after treatment for PCS, indicating a need for improved assessment strategies that better capture the severity and complexity of PCS symptoms.