Without a clinical or pathological definition, IC continues to challenge the field of Urology. Reports suggest the disease may affect as many as 9 million Americans with 90% of cases being female. 2 It is clear that the number of patients with IC continues to grow as awareness of the disease increases.
Our goals as physicians are to find therapies that are helpful to our patients. While many patients are being helped by our current treatments, we found that an equal number of patients perceive their condition to have deteriorated due to treatment. By surveying this cohort of patients, we attempted to gain insight into the various treatments and their perceived efficacies. Our study group suggests that traditionally recognized procedures for IC are perceived to be beneficial only 25-45% of the time.
Hydrodistention, intravesical instillation and urethral dilation have been the mainstay of treatment for IC. However, we found that less than half of patients improved with these traditional invasive therapies. Patients reported that their illness was made worse by these treatments 25-30% of the time. Glemain et al. found that prolonged hydrodistension (3 hours) performed on patients with initial bladder capacities of >150ml had a treatment efficacy of 37.7% at 6 months and 21.9% at one year. 3 This is consistent with our findings of 24.4% improvement with hydrodistension. Others have found no therapeutic value in the use of hydrodistention for IC. 4
Although urethral dilation had been used on 26.5% of our respondents, little had been written as to the efficacy of this procedure for IC. No prospective or retrospective studies were found in a review of the literature. Our survey found, of the 199/750 women that had undergone urethral dilation, 43.2% of them felt the procedure had no effect on their symptoms. Also, more patients were made worse with this procedure (30.7%) as compared to improved (26.5%). This leads us to the conclusion that urethral dilation is of no perceived therapeutic value in IC patients and leads to a deterioration in many patients.
Of the invasive procedures studied, intravesical therapy had the best perceived outcome. Bladder instillations were found to be beneficial 45.3% of the time; however 27.7% of patients were made worse by the treatment and 27.0% felt no effect. A Scandinavian study by Kallestrup et al. found that after three months of weekly instillations for one month and monthly instillations for two months with hyaluronic acid (Cystistat), 13/20 patients or 65% were found to be responders to the therapy. 5 However, only 20% were complete responders.
Other innovations in the treatment of IC include sacral neuromodulation. This procedure has shown improvement in patient symptoms in the literature, especially in refractory cases of IC. Our study showed that 56.3% of respondents that had sacral neurostimulation were improved. Comiter found, in a prospective study, that neuromodulation is a safe and effective means of treating refractory IC. In his study 25 patients were given a trial of sacral neurostimulation. 17 patients, (68%), showed a 50% improvement in frequency, nocturia, voided volume and average pain. 6 This result was also shared by Peters et al. who found that two-thirds of their patients undergoing the implant had moderate to marked improvement in their symptoms. 7
Less utilized procedures for the treatment of IC were evaluated in our study; cauterization (5.1%), urethrotomy/meatotomy(5.1%), and cryotherapy(2.0%). Cauterization for the treatment of IC has been used in the patients with Hunner’s ulcers. Greenberg et al. reported 61% of patients that underwent fulguration or resection of the bladder mucosa and submucosa were subjectively improved. Patients undergoing this procedure were symptom free for more than one year, n=28. 8 Our study correlated to this finding showing 55.3% of patients undergoing cauterization perceived improvement. Netto et al. postulated from his small series that internal urethrotomy was not effective in treating patients with recurrent cystitis. 9 However, Krietzer and Allen reported on 800 patients undergoing extensive urethrotomy (cold knife at 12,9,6 and 3 o’clock positions) for chronic cystitis and found 73% of their patients to be asymptomatic with a mean follow up of 22.4 months. 10 Unfortunately, no quantitative or subjective data were offered in this study to corroborate the findings. Although 2.0% of our patients had undergone cryotherapy, no case reports, reviews or scientific papers were found in the literature search for cryotherapy as a treatment for IC.
The superiority of medical therapy was not a surprising outcome of this study. Of all of the therapies surveyed, pentosan polysulfate sodium (PPS), had one of the best outcomes overall. 52.7% of the patients reported an improvement of their symptoms using PPS. Nickel et al. of the Elmiron study group found that the duration of PPS therapy, not the dosage, was the most important parameter in ameliorating symptoms of IC. Their trial tested PPS dosages of 300, 600 and 900 mg per day and found after 32 weeks that 49.6%, 49.6%, and 45.2% of patients were responders. 11 These results are similar to the result of our survey showing that 53.4% of patients reported an improvement in symptoms while taking PPS for their disease.
A mainstay in the medical arsenal of IC is amitriptyline. In 2004, van Ophoven et al. published data studying the safety and efficacy of amitriptyline in the treatment of IC. 48 patients were evaluated using the O’Leary-Sant IC symptom and problem index and was the primary parameter of the study outcome. The mean symptom score in the amitriptyline group decreased from 26.9 to 18.5 as compared to the placebo group with 27.6 to 24.1 (p=.005). 40% of the amitriptyline patients experienced a reduction in their symptom score. 12 In a 2005 follow-up study, van Ophoven et al. found a favorable overall therapeutic outcome in 46% of patients. 13 Our survey found similar numbers with 47.4% of responders stating that amitriptyline helped their symptoms.
A surprising finding in the survey was the number of women (40.1%) that had taken the over the counter medication, calcium glycerophosphate (Prelief). Calcium glycerophosphate neutralizes food acids. 60.7% of patients that had taken calcium glycerophosphate felt their symptoms were much improved. The side effect profile was superior to all medications surveyed. This unexpected finding lends credence to the theories of IC being caused by environmental irritants and allergy. However, on a review of the literature, no studies or anecdotal case reports have been published studying the efficacy of this food acid reducer. Calcium glycerophosphate may be a strong candidate for a new study designed to test the true efficacy in IC patients and its mechanism of action.
Phenazopyridine also had a large percentage of patients with improved symptoms, 57.3%. Phenazopyridine is commonly used for bladder analgesia and for 60% of patients, appears to offer relief from the symptoms of IC, again lending credence to the local irritant theory of the disease.
Our study had a large number of responders. However, due to the computerized nature of this English language survey, a socio-economic as well as language bias may be seen. Because the study was an internet based survey, the patients were self-selected and may have possibly been self-diagnosed. Our study did not survey the responders as to the length of time they had their disease or the severity of their disease. These parameters were not quantified. Our outcomes for the procedures and medical therapies were not qualified with symptom scores and pain indices. Also, our study did not look at the dosages or length of time that the drugs were taken by our responders. Although our study is limited by the nature of our self-reported data, the overall outcome is apparent. Future studies will have a standardized approach in the evaluation of the respondants.
Long term studies of the treatment options must be performed if any consensus is to come in the treatment of IC. 14 To treat these patients, a more sound mechanism of pathology must be elucidated and more aggressive treatment regimens delineated.
The invasive procedures looked at in our study appear to be perceived as less efficacious when compared to medical therapy. The invasive procedures also have a higher likelihood of causing a perceived deterioration as compared to medical therapy. Therefore, invasive therapies must be used with caution in IC patients.
Medical therapy is perceived to be superior to invasive therapy in the treatment of IC. Medication should be considered the first line therapy for IC. A greater percentage of patients reported a perceived benefit from medical therapy versus invasive therapy. Calcium glycerophosphate (Prelief), an over the counter food acid reducing agent, has shown the greatest number of patients with improvement in symptoms and best tolerability from our survey.
| Invasive procedures used for IC and treatment outcomes
||# of patients
| Intravesical agents used and perceived outcomes
|| # of Patients
|| Made worse
|| No effect
|| 159/750 (21.2%)
|| 59 (37.1%)
|| 57 (35.8%)
|| 28/750 (3.7%)
|| 15 (53.6%)
|| 3 (10.7%)
|| 10 (35.7%)
| Heparin Sodium
|| 25/750 (3.3%)
|| 16 (64.0%)
|| 5 (20.0%)
|| 4 (16.0%)
|Top 10 Medications Used by Patients for Symptomatic Relief
||# of Patients
||Side effects intolerable
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