Interstitial Cystitis & Painful Bladder Syndrome

Background

Interstitial cystitis (IC) is a syndrome whose symptoms are bladder and/or pelvic pain for which no definable cause can be found – it is NOT caused by other conditions affecting the bladder such as infections, cancer, stones, irritation from drugs or radiation, etc. or affecting the reproductive tract such as endometriosis and pelvic inflammatory disease. While many theories have been put forward, the exact cause of IC remains unknown. For this reason, the treatments are ‘empiric’ – or based on educated guesses of what should work best. This is an ongoing area of intense research.

It is very common for us to see patients whom have been seen by many other specialists beforehand. Patients are looking for a cure and for answers. There is a lot of information on the internet on IC including many theories on causes and treatments. The science was recently reviewed and for those patients whom are interested in reviewing the latest information on their own, the American Urological Association produced a document summarizing the data. There are a few key points

  1. There are probably multiple different causes. As a result, treatment is tailored to the patient.

  2. There is no known cure for this condition. The goal is to improve on the symptoms to the greatest degree possible.

  3. Patient empowerment to help themselves is a primary goal.

Causes

Currently, the cause of this conditions remains unknown.  There are several theories which are being investigated.  Possible causes being investigated include - disorder of the bladder's sensory nerves, problem with the lining of the bladder, autoimmune inflammation of the bladder among several others. 

You might be surprised to know that not all urinary problems or even  all pelvic pain originates inthe bladder! There are numerous other potential causes including problems:

  1. Gastrointestinal: hemorroids, perianal fistula and fissures, constipation, inflammatory bowel disease, rectal cancer

  2. Gynecologic: atropic vaginitis, menstrual abnormalities, endometriosis (can involve the bladder), fibroids, infection

  3. Musculoskeletal: muscle and fascial sprains and strains can occur in the pelvic muscles just like anywhere else

Diagnosis & Evaluation

One of the most important issues with pelvic pain is to exclude the presence of serious conditions involving the pelvis lower urinary tract and reproductive system. IC is a diagnosis of exclusion which means that testing is required to rule out other causes of the same symptoms (eg. infection, stone, inflammation of reproductive or urinary tract).

Physical examination is an unavoidable and very important part of the evaluation to exclude serious causes and localize any pain you may have. Please note that your symptoms may become worse following the examination - this will not be permanent.

What you can do to prepare for your Clinic Visit

  1. Complete your pre-visit questionnaire (see the male and female specific questionnaires)

  2. 3-day Voiding Diary

  3. Think about what your MOST bothersome complaint is. Pain, urinary frequency, urgency, nocturia (waking at night)

What your doctor can do to prepare for your Clinic Visit

  1. Urine analysis and culture (include Chlamydia and Gonorrhea PCR)

  2. Urine cytology

  3. PSA (in males)

  4. Imaging: optional

  5. Send us copies of prior consultations, especially from gynecologists and GI specialists

Additional testing that we may arrange

  1. Specialized urine testing: Mycoplasma and Ureaplasma

  2. Cystoscopy

  3. Urodynamics

Treatment

IC tends to be a chronic condition with exacerbations and remissions; late deterioration is unusual. About half of all patients will have remissions lasting several months, though episodes may last as little as 1 month or as long as several years. There is no ‘easy cure’ for IC. Improving your quality of life by minimizing symptoms is the primary goal.

There are several things you can do to help yourself.  In general, regular exercise, stress reduction and a healthy diet are key.  Consider warm (or cool baths) for pelvic floor tension relief. If there are obvious triggers for your symptoms, try to avoid them (eg. certain foods).

IT IS CRITICAL THAT YOU KEEP WITH THE TREATMENTS FOR LONG ENOUGH. EACH CHANGE MAY TAKE 3 MONTHS TO TAKE EFFECT. DON'T GIVE UP TOO EARLY!

It is critical that you keep with the treatments for long enough. Each change may take 3 months to take effect. Don't give up too early!)

+ Lifestyle Modifications

The importance of lifestyle modification cannot be overstated.

  1. Appropriate rest and sleep. Fatigue makes pain symptoms worse.
  2. Exercise and weight reduction if overweight. Weight stresses the pelvic floor. Be aware that some types of exercises may worsen pelvic floor symptoms (e.g. bicycle riding, especially with a poorly fitted seat)
  3. Stress reduction. Includes massage, meditation. You may not realize that you are constantly contracting you pelvic floor unnecessarily and creating excessive tension.
  4. Try modifying clothing - avoid tight undergarments (anything with elastics around the thigh)
  5. Ensure you have healthy bowel habits. Pelvic floor dysfunction can be the result of constipation, or may cause constipation on its own. Use natural laxative and ensure you have adequate fluid intake.
  6. Stress Coping - cognitive behavioral therapy, mindfulness meditation and distraction.

+ Dietary Modifications

There are only a couple well-established foods that routinely exacerbate bladder function. Caffeine , alcohol and spicy foods are well identified irritants. An approach to dietary modification in patients with pelvic pain is available. Not all pelvic patients are sensitive to food but this should be considered. Use of dietary supplements - polycitra K or sodium bicarb can be helpful.

+ Pelvic Floor Physiotherapy

Pelvic floor physiotherapy is a mainstay of treatment for pelvic pain and should be tried by virtually everyone who has significant pelvic pain. There is good evidence to support its use are there are no known long-term side-effects. Specialized pelvic physiotherapists are available. In some circumstances, pelvic floor exercises can help strengthen these muscles, but should only be used after assessment as they can exacerbate pelvic spasm.

Often more helpful is "downtraining" or pelvic floor relaxation exercises that help patients relax the pelvic floor to minimize pain, pelvic floor spasms and other symptoms of IC. Specialized pelvic floor physiotherapists can work with you for downtraining or relaxation techniques. Other techniques include trigger point release and myofascial treatments.

Neuromodulation may be helpful.

+ Alternative therapies

Complementary and alternative medicine (CAM) may be helpful. There is very little 'hard science' on the subject, so providing a medical recommendation is difficult. Having said that, most CAM approaches are likely harmless and may be beneficial. These treatments include accupuncture and naturopathy. Accupuncture has shown up to 80% response rate for pelvic pain conditions.

+ Bladder Instillations (Medications we put in the bladder)

Medications directly instilled into the bladder can be helpful with symptoms. These are usually done weekly for several weeks. Our nurse continence advisor can help with these

Bladder Instillation Mix

  • Heparin 10,000-40,000 units (1-4 cc)
  • Lidocaine 2% plain (8-10 cc)
  • Sodium bicarbonate (4-5 cc)
  • DMSO - Dimethyl Sulfoxide

+ Medications

Several oral and suppository medications have been tried for IC. It is important to note that for almost all of these treatments that a 3-6 month trial is necessary. Often patients with severe symptoms take 6-12 to take effect. Often these medications are used together.

  1. Bladder relaxants (anticholinergics) and Botox. The symptoms of IC may overlap with those of overactive bladder. Similar treatments may be used.
  2. Elmiron 100 mg three times per day or 200 mg BID (pentosan polysulfate sodium) - 21-56% respones rate.
  3. Antihistamine - Hydroxyzine 10-25 mg qhs or Ceterizine 10 mg
  4. Tricyclic antidepressants (TCA's) - Amiitryptline 25-50 mg qhs - 65% response rate
  5. Selective Serotonin Reuptake Inhibitors (SSRI's)
  6. Selective Norepinephrine Reuptake Inhibitors (SNRI) - Duloxetine (Cymbalta) 20-120 mg per day - indicated for depression and chronic pain management (can tighten the bladder neck and cause retention in patients with tight pelvic floor)
  7. Urinary analgesics - Prelief for food flares or freeze-dried aloe
  8. Alpha blockers - may help with dysfunctional voiding and retention
  9. Urinary alkalinization - potassium citrate
  10. Skeletal muscle relaxants - diazepam 2.5-10 mg TID
  11. Valium Vaginal suppository 10 mg qd (can also be used as a rectal suppository in men)
  12. Narcotics and Pain relievers - often this is used in conjunction with a chronic pain team when other therapies have failed

+ Surgery

Surgery has a limited role in the management of interstitial cystitis. Please not that it is very common for the symptoms to be come worse temporarily following surgical treatment, but no long term side effects should be expected. There are a few potential treatments.

  1. Hydrodistension. This is a water stretch of the bladder which is done under a general anesthetic. By stretching the bladder, it may increase capacity and decrease sensation of pain with filling.
  2. Urethral dilation. Probably best done under an anesthetic, it may decrease

On the Web

General Urology Websites

Canadian Urological Association  Extensive library of downloadable pamphlets on a wide range of urological conditions

Cleveland Clinic

Mayo Clinic

Medline Plus Produced by the US National Institutes of Health with information on virtually every health topic and extensive list of links

UrologyHealth.org The patient information site of the American Urological Association.