To examine women’s experiences of pelvic congestion syndrome (PCS) pain.

Descriptive, cross-sectional.

Online questionnaires in a Facebook PCS support group.

Convenience sample of 143 women who self-identified as being diagnosed with PCS.

We recruited women through a social media support group and invited them to participate in a self-reported questionnaire. We collected demographic information and used the McGill Pain Questionnaire to elicit responses related to pain quality, pain intensity, quality of life, and satisfaction with health care. We analyzed data using descriptive statistics and correlation coefficients.

Respondents characterized their PCS pain as exhausting, stabbing, sharp, shooting, and tender. Respondents indicated that 19 of 24 daily activities increased PCS pain, whereas only 5 reduced PCS pain. Pain intensity was negatively related to the quality of life, health satisfaction, sleep, and sexual relationships.

Chronic pelvic pain from PCS severely affected quality of life among respondents. These findings suggest a difference in the presentation of PCS from historical pain depictions and further highlight the need to identify pain profiles to increase timely and precise diagnosis. Further research is needed to evaluate interventions to increase the quality of life for women with PCS.