Long-term follow-up after cystectomy for bladder pain syndrome: pain status, sexual function and quality of life

Purpose To assess the long-term complications, pain status, sexual function and quality of life after cystectomy for bladder pain syndrome (BPS). Methods We retrospectively reviewed functional variables for 35 patients (34 women/1 man, 67 +/- 9 years old) who underwent cystectomy due to BPS since 1993 in our department. Cystectomy was offered to patients with BPS refractory to conservative treatments. Six cystectomies with ileal conduit (17.1%) and 29 supratrigonal cystectomies with enterocystoplasty (82.9%) were performed. Prospectively, patients completed questionnaires on pain [BPIC-SS, visual analogue scale (VAS) for pain], health-related quality of life (EQ-5D) and sexual function (FSFI; 2-36), rated satisfaction with surgery (0-10) and reported whether they would undergo the same surgery again. Results Mean follow-up was 107 +/- 83 months. In two (5.7%) patients, pain persisted and in one patient (2.8%) pain recurred after 20 months. Significant improvements in daytime and nighttime frequency and bladder capacity were observed postoperatively. 21 patients completed questionnaires. Mean BPIC-SS was 7.5 +/- 8.4, mean VAS score 2.5 +/- 2.8. 14 (66.7%) patients reported no problems related to pain on the EQ-5D, similar to our regional reference population. 13 (61.9%) patients had sexual intercourse after surgery, ten of them without pain. Mean FSFI score was 9.5 +/- 9. Satisfaction with surgery was 8.8 +/- 1.7 and 20 (95.2%) patients would undergo the same surgery again. Conclusion Pain persistence or recurrence after cystectomy for BPS is infrequent. Quality of life related to pain is similar to that in the general population and patients can resume sexual activity without pain.