What is Interstitial Cystitis/Painful Bladder Syndrome?
Interstitial Cystitis or Painful Bladder Syndrome are terms used to describe uncomfortable or painful bladder symptoms that may include or mimic recurrent urinary tract infections, feelings of urgency and frequent need to urinate (including at night), burning, pain, pelvic pressure or discomfort. A wide range of symptoms make the condition difficult to diagnose initially, and it may take years before a proper diagnosis is reached. The condition may range from mild feelings of urgency and frequency with intermittent burning or discomfort to severe, unrelenting, debilitating pain and significantly reduced bladder capacity with blood in the urine and ulcerations of the bladder wall. The cause of this condition is unknown, and is probably multifactorial including environmental, genetic, immunologic and structural factors. It is not unusual for a sufferer to also have similar associated conditions such as irritable bowel syndrome, endometriosis, migraine headache, vulvodynia/vulvar vestibulitis, or fibromyalgia.
How is it diagnosed?
The initial diagnosis may be presumptive rather than related to a specific diagnostic test. The clinical signs and symptoms may point to the diagnosis. A cystoscopy is usually performed at some point in order to determine whether any ulcerations are present, and some practitioners perform a hydrodistension to make the diagnosis. This is somewhat controversial as repeated hydrodistensions may cause scarring and shrinkage of the bladder capacity, and an initial hydrodistension may give a false positive reading. The presence of Hunner lesions (small ulcers of the bladder wall) are considered definitive diagnostic findings.
What can be done to treat it?
Treatment is usually done in a stepwise fashion, beginning with the simplest and least invasive and proceeding as needed/indicated to more complex or invasive treatments.
- Dietary: Avoidance of PERSONAL bladder irritants is paramount under all circumstances with IC. Many individuals will learn from experience that tomatoes, coffee, tea, chocolate, or spicy foods may worsen or cause symptoms. The key to finding and following the proper diet usually lies with elimination of all potential irritants at first (not an easy task for most) and gradually adding back potential irritants one at a time in order to determine which foods or liquids are on the “OK” list. Often, the list of foods/drinks to avoid includes bowel irritants as the bladder and bowel are often irritated by the same or similar substances. See the attached list or go to www.ic-network.com for a list of foods to avoid.
- Pelvic Therapy: Very often, when a painful condition exists in the pelvis the pelvic musculature and connective tissue become inflamed, irritated, spastic and tight. This leads to a vicious cycle of more pain and more clenching. The worst thing for this is to try to do Kegel exercises or “pelvic strengthening” exercises. The most important thing to do in a situation like this is to find a well-trained pelvic physical therapist who can help with reducing the muscle spasm and inflammation that has developed in the tissues. Myofascial pain, referring to the muscles and connective tissue, is extremely common and a significant contributor to the discomfort felt with interstitial cystitis/painful bladder syndrome. Therapy may consist of hot baths in Epsom Salt, intravaginal muscle release, stretching, sometimes in conjunction with muscle relaxants. This is an often overlooked but extremely important aspect of treatment. There are multiple studies demonstrating the importance of physical therapy in pelvic pain disorders including IC/PBS.
- Supplements: There are several supplements that have been useful to treat either recurrent urinary tract infection or interstitial cystitis/painful bladder syndrome. Pre-lief is quite helpful for some individuals. Also, freeze-dried Aloe Vera extract can be helpful for some individuals, particularly in reducing recurrent urinary tract infections.. As with anything, allergies to just about anything are possible, so it is important to consider a possible sensitivity or allergy if the supplement doesn’t help or seems to worsen symptoms. D-mannose has been used to reduce the ability of bacteria to stick to bladder walls and cause infection, so is often recommended to help prevent UTIs. While cranberry products such as Ellura ® and Theracran ® may be helpful in preventing UTIs, they may irritate a bladder when IC/PBS is present, so should be approached with caution. Supplements designed to treat IC which contain Quercetin, chondroitin sulfate and sodium hyaluronate have been helpful for many. There are several brand names containing a mixture of these ingredients with other things such as herbal extracts, and though data are lacking in the absence of an allergy or known interaction may be worth considering.
- Medications: Elmiron ® is the only prescription oral medication in the USA with a specific indication for Interstitial Cystitis. It is taken 3 times daily and may take up to 3 months to take effect. Other medications used may include amitriptyline, cymbalta, hydroxyzine, cimetidine or ranitidine. RIMSO-50 is a liquid form of DMSO (dimethylsulfoxide) that can be instilled directly into the bladder and is approved to treat IC.
- Bladder instillations: There are many “recipes” for various bladder “cocktails” to be used in treating IC/PBS and/or recurrent urinary tract infections. Most of the recipes include lidocaine and heparin, many include triamcinolone (a steroid similar to cortisone), sodium bicarbonate, and an antibiotic (usually gentamicin). We have seen many patients obtain relief both from recurrent urinary tract infections and symptoms of IC with this therapy.
- Surgical: Cystoscopy with cauterization of Hunner lesions (ulcerations in the wall of the bladder) and/or hydrodistension (stretching with fluid by filling the bladder to its maximum size) can be done in certain cases. There is evidence that cauterizing the ulcers may help with symptoms. Hydrodistension is somewhat more controversial, as it may relieve symptoms but the relief is often temporary and may result in scarring or damage to the bladder in some cases. It can be a helpful diagnostic tool at times as well. If there is a question regarding the diagnosis and/or treatment a cystoscopy is usually performed at some point.
Is there a cure?
Since we don’t know the cause, it is hard to say whether we can find a cure. It is possible that we are seeing several different conditions with similar symptoms. Many individuals undergo a remission of sorts. Until we understand all of the possible causes and their specific treatments, we will not be able to definitively “cure” IC. However, we can work together to make it liveable.
Linda Kiley, MD
Dr. Kiley is a Board Certified subspecialist in Female Pelvic Medicine and Reconstructive Surgery, and is also Board Certified in general Obstetrics and Gynecology.