Believing women: a qualitative exploration of provider disbelief and pain dismissal among women with interstitial cystitis/bladder pain syndrome from the MAPP research network.

INTRODUCTION AND HYPOTHESIS: Although allusions to the importance of a good physician-patient relationship are present throughout the interstitial cystitis/bladder pain syndrome (IC/BPS) literature, qualitative analysis of patients' perspectives on the clinical encounter is lacking, particularly among women who are most commonly affected by IC/BPS. Therefore, we adopted a patient-centered experiential approach to understanding female patients' perception of clinical encounters. METHODS: We re-analyzed previously collected data from a qualitative study on patient flare experiences including eight focus groups of female IC/BPS patients (n = 57, mean = 7/group). Qualitative analysis applied grounded theory to index all physician-patient interactions, then thematically coded these interactions to elucidate common experiences of clinical encounters. RESULTS: Women with IC/BPS shared common experiences of provider disbelief and pain dismissal. Discussions with participants demonstrated the extent to which these negative encounters shape patients' health care-seeking behavior, outlook, and psychosocial well-being. Appearing in more than one guise, provider disbelief and dismissal occurred as tacit insinuations, explicit statements, silence, oversimplification, and an unwillingness to listen and discuss alternative treatment. As a result, women adopted several strategies including: rotating specialists; "testing" physicians; self-advocacy; self-management; avoiding the stigma of chronic pain; crying; and opting for alternative medicine over biomedicine. CONCLUSIONS: The prevalence of provider disbelief and pain dismissal among women with IC/BPS indicates a need to improve physician-patient communication, informed by the struggles, anxieties, and gendered inequities that female patients with chronic pain experience in their diagnostic journey. Results suggest that further investigation into the power dynamics of clinical encounters might be required.

Mapping and neuromodulation of lower urinary tract function using spinal cord stimulation in female rats.

Spinal cord epidural stimulation (SCS) represents a form of neuromodulation for the management of spasticity and pain. This technology has recently emerged as a new approach for potentially augmenting locomotion and voiding function in humans and rodents after spinal cord injury. However, the effect of SCS on micturition has not been studied extensively. Here, SCS was first applied as a direct stimulus onto individual segmental levels of the lumbar spinal cord in rats to map evoked external urethral sphincter (EUS) electromyography activity and SCS-induced voiding contractions. SCS of L2-3 inhibited EUS tonic activity, and SCS on L3 (L3/SCS) inhibited EUS tonic activity and elicited EUS bursting. In contrast, SCS of L1 and L4-6 evoked EUS tonic contractions, which resembled the urethral guarding reflex during bladder storage. Next, the effects of a bilateral pelvic nerve crush (PNC) injury on urodynamic function were examined at 14 days post-operatively. The PNC injury resulted in decreased voiding efficiency and maximum intravesical pressure, whereas the post-voiding residual volume was increased, suggestive of an underactive bladder. Finally, L3/SCS was performed to induce a voiding contraction and enable voiding in rats with a PNC injury. Voiding efficiency was significantly increased, and the residual volume was decreased by L3/SCS in rats after the PNC injury. We conclude that L3/SCS may be used to induce micturition reflexes in a partially filled bladder, reduce urethral resistance, and augment bladder emptying after PNC injury.

Treatment choice, duration, and cost in patients with interstitial cystitis and painful bladder syndrome.

INTRODUCTION AND HYPOTHESIS: In order to better understand provider treatment patterns for interstitial cystitis (IC)/painful bladder syndrome, we sought to document the therapies utilized and their associated expenditures using a national dataset. METHODS: A cohort was created by applying the ICD-9 diagnosis of IC (595.1) to INGENIX claims for the year 1999. Subjects were followed for 5 years, and patterns of care and related expenditures were evaluated. RESULTS: Of 553,910 adults insured in 1999, 89 subjects had a diagnosis of IC with 5-year follow-up data. All subjects were treated with oral medication(s), 26% received intravesical treatments, and 22% underwent hydrodistension. Total expenditures per subject were $2,808. CONCLUSIONS: The majority of IC expenditures were attributable to oral medical therapy. Hydrodistension and intravesical instillations were utilized in less than 25% of patients. Hydrodistension was used more frequently among subjects with a new diagnosis; this may reflect its utilization as part of a diagnostic algorithm.

Increased startle responses in interstitial cystitis: evidence for central hyperresponsiveness to visceral related threat.

PURPOSE: Hypersensitivity to visceral stimuli in interstitial cystitis/painful bladder syndrome may result from enhanced responsiveness of affective circuits (including the amygdala complex) and associated central pain amplification. Potentiation of the eyeblink startle reflex under threat is mediated by output from the amygdala complex and, therefore, represents a noninvasive marker to study group differences in responsiveness in this brain circuit. MATERIALS AND METHODS: Acoustic startle responses were examined in female patients with interstitial cystitis/painful bladder syndrome (13) and healthy controls (16) during context threat (application of muscle stimulation electrodes to the lower abdomen overlying the bladder), and cued conditions for safety (no stimulation possible), anticipation and imminent threat of aversive abdominal stimulation over the bladder. RESULTS: Patients showed significantly greater startle responses during nonimminent threat conditions (baseline, safe and anticipation periods) while both groups showed similar robust startle potentiation during the imminent threat condition. Higher rates of anxiety and depression symptoms in the patient group did not account for the group differences in startle reflex magnitude. CONCLUSIONS: Compared to controls, female patients with interstitial cystitis/painful bladder syndrome showed increased activation of a defensive emotional circuit in the context of a threat of abdominal pain. This pattern is similar to that previously reported in patients with anxiety disorders as well as those with irritable bowel syndrome. Since these circuits have an important role in central pain amplification related to affective and cognitive processes, these results support the hypothesis that the observed abnormality may be involved in the enhanced perception of bladder signals associated with interstitial cystitis/painful bladder syndrome.

Short-term results of bilateral S2-S4 sacral neuromodulation for the treatment of refractory interstitial cystitis, painful bladder syndrome, and chronic pelvic pain.

We evaluated the efficacy of bilateral caudal epidural sacral neuromodulation for the treatment of refractory chronic pelvic pain (CPP), painful bladder syndrome, and interstitial cystitis (IC). Thirty consecutive patients (21 female, 9 male) with severe refractory symptoms underwent bilateral S2-S4 sacral neuromodulation for CPP/IC. Patients were evaluated with the O'Leary IC symptom and problem index (ICSI, ICPI), the short form of the Urogenital Distress Inventory (UDI-6), and the RAND 36-item health survey (SF-36) preoperatively and 6 months postoperatively. The mean and minimum follow-up were 15 and 6 months, respectively. Of the 30 patients, 23 (77%) had a successful trial stimulation and were permanently implanted. Among these patients, the ICSI and ICPI scores improved by 35 (p = 0.005) and 38% (p = 0.007), respectively. The pain score improved by 40% (p = 0.04) and the UDI-6 score by 26% (p = 0.05). On average, patients reported a 42% improvement in their symptoms. SF-36 scores did not improve significantly. In refractory patients, bilateral caudal epidural sacral neuromodulation is another possible mode of treatment, which appears to improve both pelvic pain and voiding symptoms.

The effects of bilateral caudal epidural S2-4 neuromodulation on female sexual function.

This is a pilot study to evaluate the effects of caudal epidural S2-4 neuromodulation on female sexual function in a population of women with voiding dysfunction. We prospectively studied 36 consecutive female patients who underwent caudal epidural sacral neuromodulation. Patients received the Female Sexual Function Index (FSFI) questionnaire preoperatively and 6 months postoperatively. Six months after permanent implantation, the overall score on the FSFI improved by 52% (p = 0.05). Results were better in patients who underwent the treatment for voiding dysfunction compared to those who had pain as their primary complaint. In this group, the overall score improved by 157% (p = 0.004). Stimulation of S2-4 by bilateral caudal epidural neuromodulation in this small group of women with voiding dysfunction, retention, and/or pelvic pain resulted in self-reported improvements in sexual function. Further studies are needed to evaluate the potential role of S2-4 sacral stimulation in the treatment of female sexual dysfunction.

Bilateral caudal epidural neuromodulation for refractory urinary retention: a salvage procedure.

PURPOSE: Sacral neuromodulation with InterStim is approved for idiopathic urinary retention with a success rate of approximately 69%. To our knowledge currently no alternatives exist for patients in whom S3 neuromodulation fails. We report a new technique and our experience with bilateral caudal epidural neuromodulation in patients in urinary retention in whom unilateral or bilateral S3 InterStim failed. MATERIALS AND METHODS: Eight patients with multifactorial urinary retention in whom S3 InterStim previously failed underwent retrograde placement of bilateral tined leads into the caudal epidural space for sacral nerve stimulation. Patients with a 50% or greater clinical response underwent stage 2 Synergy-Versitrel implantable pulse generator placement. Patients were evaluated with voiding diaries, the Urinary Distress Inventory Questionnaire short form, quality of life assessment, need for catheterization and post-void residual urine preoperatively, and 6 months after implantation. RESULTS: Five of the 8 patients experienced return of micturition and underwent placement of a permanent implantable pulse generator. At 6-month followup 4 of the 5 patients voided to completion. One patient improved more than 50% and now catheterizes once daily with a post-void residual urine of 200 cc. There was a significant decrease in obstructive symptoms on the Urinary Distress Inventory Questionnaire short form and improved overall quality of life. CONCLUSIONS: To our knowledge this is the first report of the use of bilateral caudal epidural neuromodulation for refractory urinary retention. This therapy can be successful in patients in whom prior InterStim therapy failed.

Failure of sacral nerve stimulation due to migration of tined lead.

PURPOSE: Stimulation of the sacral nerves is a commonly used treatment for frequency, urgency, urge incontinence, retention and other types of voiding dysfunction. Minimally invasive placement of a percutaneous permanent quadripolar tined lead into the sacral foramen has been described. No lead migration has been reported. We report on our experience with lead migration and the subsequent failure of InterStim in a large cohort of patients with a focus on possible diagnostic and salvage techniques. MATERIALS AND METHODS: Between February 2002 and April 2005 tined lead electrodes were implanted in the S3 foramen in 235 patients using the InterStim system. Patients with a good response during the testing phase (greater than 50% improvement) underwent placement of an implantable pulse generator. Position was confirmed by radiographic evaluation intraoperatively. Sacral radiographs were obtained at the first postoperative visit, after IPG placement and whenever there was a change in symptomatic response. RESULTS: There were 5 patients (2.1%) in whom treatment failed after a successful trial of stimulation due to lead migration. This was seen as early as 3 weeks and as late as 8 months. Migration of the lead occurred between first and second stage implantation in 1 of the 5 cases, and occurred after the second stage in 4 of 5. Anterior migration was noted in 4 patients and posterior migration was noted in 1. CONCLUSIONS: Lead migration after placement of the tined lead can occur and thus sacral radiographs should be routinely used. This complication can be easily resolved without significant morbidity to the patient.

Prospective analysis of patients treated with a distal urethral polypropylene sling for symptoms of stress urinary incontinence: surgical outcome and satisfaction determined by patient driven questionnaires.

PURPOSE: We evaluated the safety and efficacy of the distal urethral polypropylene sling for stress urinary incontinence using patient self-assessment by questionnaires. MATERIALS AND METHODS: We performed a prospective study of all consecutive patients who underwent a mid distal urethral sling procedure between November 1999 and February 2002. Surgical outcome was determined by symptom, bother and quality of life questionnaires completed by the patients. The physicians were blinded to patient responses. These outcomes were compared to the SEAPI determined by the physician and to physical examination findings. RESULTS: There were 301 patients, of whom 2.3% required treatment for persistent stress urinary incontinence (SUI) after the polypropylene sling procedure. In the 92 patients with a minimum followup of 12 months the objective cure rate was 92%. The patient determined subjective success rate (cure and improved greater than 50%) was 89%. On questionnaires only 69% of the patients reported no symptoms of SUI under any circumstance and the same number reported never being bothered by SUI. The physician determined SEAPI overestimated patient self-reported symptoms by 10% to 50% depending on the symptom. CONCLUSIONS: The polypropylene sling represents an inexpensive, safe and simple alternative treatment for patients with stress urinary incontinence. The procedure provides high objective and physician determined cure rates but a lower patient self-reported subjective cure rate. Patient self-assessment of symptoms, bother and quality of life should be an integral part of the outcome of stress urinary incontinence surgery.