Bladder pain syndrome (BPS) (previously known as interstitial cystitis and painful bladder syndrome) is a chronic benign condition of unknown aetiology. It is defined by the European Society for the Study of Interstitial Cystitis/Bladder Pain Syndrome (ESSIC) as “chronic (>6months) pelvic pain, pressure or discomfort perceived to be related to the urinary bladder accompanied by at least one other urinary symptom like the persistent urge to void of frequency”.  Management of BPS is multi-modal with a variety of treatments available however good quality evidence for many is lacking and there is no global consensus for optimum management. The role of surgery is uncertain and currently reserved for patients who are considered refractory to treatment. European Association of Urology guidelines for BPS suggest patients should only undergo surgery as a “last resort” and should be managed in a specialist centre. No particular surgical technique is recommended however total cystectomy with ileal conduit is the most common. Other described techniques are supratrigonal or subtrigonal cystectomy with augmentation or total cystectomy and orthotopic neobladder formation. We aimed to report our experience and outcomes of surgical intervention for bladder pain syndrome in a tertiary referral centre.

A retrospective review was performed on all patients who underwent cystectomy or subtotal cystectomy between 2007 and 2017. Data was collected from physical and electronic case notes as well as radiology and pathology computer systems. Primary outcome measures were pain and frequency. Secondary outcome measures were complication and mortality rates. 34 patients were identified, 5 male (14.7%) and 29 female (85.3%). The median age was 49.5 years (range 30-79). The mean duration of symptoms between diagnosis and procedure was 6.4 years. All 34 patients had documented chronic pain perceived to be related to the bladder. The median episodes of nocturia was 6 and median daytime frequency was 1 hourly. 19 patients had a previous history of pelvic surgery and 4 had a history of fibromyalgia. All patients were considered refractory to treatment and had undergone a wide range of previous management modalities. Median bladder capacity under general anaesthetic was 500ml with mean maximum cystometric capacity of 275ml.

Median follow-up was 32 months. 27 patients underwent total cystectomy (79.4%) – 23 had an ileal conduit diversion and 4 had a neobladder constructed with mitrofanoff formation. 7 patients underwent subtotal cystectomy and augmentation cystoplasty with ileum (20.6%). There were no intraoperative complications. Median length of stay overall was 13.5 days (Subtotal cystectomy and augmentation 14 days, total cystectomy and ileal conduit 13 days, total cystectomy and neobladder and mitrofanoff formation 16 (days). Clavien-Dindo grade 3 or above complications occurred in 4 patients (11.8%).  Persistent pain occurred in 8 patients overall (23.5%). 50% (2) of those who underwent total cystectomy and neobladder and mitrofanoff formation continued to have pain; one of whom proceed to excision of neobladder and formation of ileal conduit, they were pain free following excision. 28.6% (2) of patients who underwent subtotal cystectomy with augmentation compared to 17.3% of patients who had undergone total cystectomy and ileal conduit formation.

The management of BPS can be very difficult due to the unknown aetiology and wide range of symptoms that can be experienced by patients suffering from the condition. Surgical intervention is reserved for cases refractory to all other treatment methods however there is limited evidence regarding the optimal surgical procedure. We have demonstrated that 76.5% of patients in our unit undergoing surgery for BPS had resolution of their pain with a complication rate of 11.8%. However it should be emphasised that all patients undergo extensive counselling with the surgical team, specialist nurse and stoma nurse before embarking on surgery.

Surgery for patients with BPS is reserved for patients with severe symptoms who are considered refractory to other treatment options. In our experience patients have lower rates of persistent pain following total cystectomy and ileal conduit formation compared to subtotal cystectomy and augmentation and total cystectomy with neobladder formation. It is important that all patients with refractory BPS are fully counselled pre-operatively in order to manage expectations and consider the risks of any procedure fully before embarking on surgical intervention.