Why have so many interstitial cystitis patients in Canada come to the USA for care? Despite the glowing reviews about universal health care, there is a sad IC truth behind the scenes north of the border. There is no national IC organization to advocate on their behalf. Only a handful of physicians in the nation specialize in IC, including some who are no longer taking patients. Worse, it can take many months to see a urologist only to discover, at that first meeting, that they have little if any training in IC. Some patients believe that they have had no choice but to come across the border into the US for care.
We hope that this will change with the release of the first guidelines for the treatment of IC/BPS in Canada. The guidelines are very similar to the guidelines issued by the American Urological Association with some importance differences. They can be used by every patient to research their treatment options and standard of care. More importantly, they should be used by every urology and medical care provider to guide their diagnostic workup and treatment of IC patients!
Here’s a quick summary!
Treatments Rated From Conservative to Radical Surgery
Conservative Self-Help Therapies
Like the AUA, the CUA guidelines focus on using those therapies with the least risk of adverse events and side effects first, including patient education, diet modification, bladder training, stress management and psychological support for those patients who are suffering from stress. They encourage physicians to be emotionally supportive just as they encourage patients to work actively to reduce stress by exercising, reducing working hours, meditation, yoga, and guided imagery.
The CUA encourages a thorough examination of the pelvic floor muscles as part of the diagnostic workup. If tight, high tone muscles are found, they strongly recommend physical therapy and massage. Studies have shown that 50 to 62% of patients receiving physiotherapy experienced a moderate or marked improvement with another 21% experienced a complete resolution of their symptoms .
The CUA suggests most of the oral therapies (amitryptiline, hydroxyzine, pentosan polysulfate, cimetidine, etc.) as the AUA, including a strong recommendation for quercetin based OTC supplements. Another oral medication, cyclosporine, is only suggested for more severe cases due to the high risk of side effects.
The typical bladder instillations are also discussed in depth including DMSO-50, Heparin, Hyaluronic Acid (aka Cystistat, Chondroitin Sulfate (Uracyst), pentosan polysulfate (Elmiron) and lidocaine. They do not recommend the use of Resiniferatoxin (RTX) or Bacillus Calmette-Guerin (BCG). Please note that the very old, outdated bladder treatments of silver nitrate and clorpactin were not included nor discussed in the guidelines.
Minimally Invasive Procedures
Despite the lack of evidence supporting success, hydrodistention continues to be commonly used in Canada though the complications are potentially severe including: IC flares, bladder rupture and bladder necrosis. They only encourage the use of short-term, low pressure procedures, stating that prolonged procedures should be discouraged due to a 20% complication rate.
Treatment of Hunner’s lesions is a priority using fulguration, laser therapy and/or steroid injection.
Botox and sacral neuromodulation are also recommended.
Radical surgeries such as urinary diversion or cystectomy are rarely used and “should be considered an absolute last resort.”
Several new and promising therapies were discussed though additional research is needed including: hyperbaric oxygen, Phosphodiesterase-5 inhibitors, monoclonal antibodies, cannabinoids and intravesical liposomes.
Phenotype Driven Treatments
What makes the CUA Guidelines the most revolutionary of all the national guidelines, however, is their strong recommendation that patients be first assessed to determine what pelvic pain phenotype they may fit within. This way, the most promising and appropriate therapy can be directed for that unique patient situation.
It is the panel’s expert opinion that the traditional and structured tiered mono therapy approach is not the optimal therapeutic strategy. An individualized treatment plan, directed towards that patients unique clinical phenotype… will lead to the best outcomes.
They suggest using the UPOINT phenotype system which assesses patients in six ways: bladder symptoms, muscle tone, neurologically related conditions, bladder wall condition, UTI if present and anxiety/catastrophizing. In research studies, the application of the UPOINT system resulted in a significant improvement of 47.2% of participating patients and a major improvement in 26.9% of patients.
Lack of Pain Care Discussion
If there is one glaring deficiency in these guidelines it’s the lack of discuss about pain treatment. The American Urology Association guidelines demand that patients struggling with pain be treated compassionately and that pain should be assessed and measured at every appointment. The AUA also encourages the use of a variety of pain treatment modalities including, if necessary, the use of opiate medications. The CUA guidelines, on the other hand, rarely discuss pain care other than a brief mention of the use of gabapentin. This is very disappointing for those patients who are seeking evidence to support pain treatment. Let’s hope that they revisit this issue in the near future.
Cox A, et al. CUA Guideline: Diagnosis and Treatment of IC/BPS. Can Urol Assoc J 2016;10(5-6):E136-55