Interstitial Cystitis (IC), also known as painful bladder syndrome (PBS), is a chronic, painful condition of the bladder. Although there is no cure, many treatment options are available to help alleviate the symptoms of IC. The ICA Treatment Guidelines help healthcare providers and patients develop a step-by-step treatment plan. Since IC symptoms vary from patient to patient, treatment plans also vary. Healthcare providers and patients should discuss all viable treatment options. Contact the ICA for Brochures and Fact Sheets about IC treatment options.
Founded by a physician/patient in 1984, The Interstitial Cystitis Association (ICA) is dedicated to helping all people with IC. The ICA provides the most comprehensive and up-to-date information on IC; offers IC patients, their families, and friends a support network; educates the medical community and the public about IC; advocates in the public and private sectors for research funding and patients' rights; and promotes and provides research funding to find effective treatments and a cure for IC. To fulfill this mission, we:
- produce the ICA Update magazine, to help you and your loved ones keep up-to-date on the newest IC developments
- publish ICA Professional Perspectives, to further educate healthcare providers about the latest IC developments
- host www.ichelp.org, the website with the most current educational resources, support, research, and IC-related news
- provide the authoritative, monthly online news digest, Cafe ICA—the source for medical highlights, self-help and coping strategies, and ICA news
- offer a nationwide network of ICA National Patient Support Advocates for individuals needing a friendly, informed, and understanding ear
- fund the ICA Pilot Research Program and administer the Fishbein Family IC Research Foundation—in the past decade these programs have distributed over $2.5 million in IC research grants
- work closely with Congress and the National Institutes of Health (NIH) to ensure continued funding of IC research at the federal level.
Interstitial cystitis is a chronic inflammatory condition of the bladder wall. The cause of IC is unknown. Symptoms are similar to a urinary tract infection (UTI), also known as bacterial cystitis. However, UTIs are caused by bacteria and can be successfully treated with antibiotics. Unlike a UTI, IC is not caused by bacteria and does not respond to conventional antibiotic therapy. It is important to note that IC is not a psychosomatic disorder nor is it caused by stress.
IC can affect people of any age, race, or sex. It is, however, more commonly found in women. Studies estimate that there are more than one million cases of IC in the US. However, this is considered an underestimation because IC is often undiagnosed or misdiagnosed. Although it is considerably less well known, the incidence of IC is similar to that of Parkinson's disease or type I diabetes.
Some or all of these symptoms may be present:
Frequency: Day and/or night frequency of urination (up to 60 times in 24 hours in severe cases). Some patients experience mild, moderate, or severe nighttime frequency, while others may experience no nighttime voiding. The absence of nighttime voiding does not exclude the diagnosis of IC.
Urgency: The sensation of having to urinate urgently, which may also be accompanied by pain, pressure, or spasms.
Pain/Pressure: Can be in the pelvic region, bladder, urethral, or vaginal areas. Pain is also frequently associated with sexual intercourse. Men with IC may experience testicular, scrotal and/or perineal pain, and painful ejaculation. The absence of pain/pressure does not exclude the diagnosis of IC.
Other Disorders: Some patients also report muscle and joint pain, migraines, allergic reactions, and gastrointestinal problems, as well as the more common symptoms of IC described above. It appears that IC has an as yet unexplained association with certain other chronic diseases and pain syndromes such as vulvodynia, fibromyalgia, and irritable bowel syndrome.
[Alagiri, et al, "Interstitial Cystitis: Unexplained Associations with Other Chronic Disease and Pain Syndromes," Supplement to Urology, May 1997, pp. 52-57]
More research is needed to understand all aspects of IC, including variations in treatment response.
Many people with IC have difficulty obtaining a diagnosis. Currently there is no fool-proof diagnostic test for IC and medical professionals may make a diagnosis based on your symptoms and on ruling out other conditions.
Typically, the following tests can be helpful in making the diagnosis of IC:
Urine cultures to determine if there is a bacterial infection present.
Tests to rule out other conditions that have symptoms resembling IC. These may include bladder cancer, kidney problems, tuberculosis, vaginal infections, sexually transmitted diseases, endometriosis, radiation cystitis, and neurological disorders. It is important to note that these conditions can co-exist with IC.
Cystoscopy with hydrodistention under general anesthesia if no infection is present and no other disorder is discovered. Cystoscopy during a routine office visit may not reveal the characteristic abnormalities of IC and can be too painful for those who have IC. During cystoscopy with hydrodistention the bladder is distended under general or real anesthesia in order to see the pinpoint hemorrhages on the bladder wall that can be a sign of IC. A biopsy of the bladder wall may be taken at this time to rule out other bladder diseases and to assist in the diagnosis of IC.
Note: While bladder hydrodistention is part of the diagnostic procedure for IC, it may also be therapeutic for some patients.
Non-invasive techniques, such as diet modification and self-help measures, may be used in combination with other, more traditional medical therapies, and are considered a first step in relieving IC symptoms. Response to treatment is individual.
Diet & Self-Help: A diet low in acidic foods and beverages— such as coffee and most teas—and avoiding carbonated and/or alcoholic drinks, may be helpful in reducing IC symptoms.
Physical Therapy: The goal of physical therapy for IC patients is to relax the pelvic floor muscles and avoid overly stressing them. Many people with IC have problems with this group of muscles and develop a condition called pelvic floor dysfunction (PFD). Treatment usually combines physical therapy, home exercise, medication, and self-care.
Tricyclic antidepressants: Used for their anti-pain properties, and prescribed in low dosages. Benefits include: anticholinergic effects which help decrease urinary frequency; sedative effects; and the blockage or reuptake of certain neurotransmitters that cause the brain to misinterpret or ignore pain impulses.
The most common tricyclic antidepressants used to treat IC are: amitriptyline (formerly Elavil, now generic), desipramine (Norpramin), nortriptyline (Pamelor), doxepin (Sinequan), and imipramine (Tofranil). Also, selective serotonin reuptake inhibitors (SSRIs), such as paroxetine (Paxil), or selective serotonin and norepinephrine reuptake inhibitors (SSNRIs), such as duloxetine (Cymbalta), may be helpful in select patients.
Antihistamines: Especially useful for IC patients with allergies. The most widely used antihistamine to treat IC is hydroxyzine (Atarax, Vistaril), which affects mast cell degranulation (thought to play a part in causing some IC symptoms). It also has sedative and anxiety reducing effects. Hydroxyzine is available in two oral forms—hydroxyzine pamoate, and hydroxyzine hydrochloride. Hydroxyzine pamoate has a slightly higher absorption rate. Hydroxyzine hydrochloride is available in liquid form for patients allergic to fillers or dyes used in the capsules or pills. Cromolyn sodium (Gastrocrom), a mast cell inhibitor, may also help to relieve IC symptoms in some patients.
Elmiron (pentosan polysulfate sodium): FDA-approved in 1996, Elmiron is the only oral medication approved specifically for use in IC, and is thought to work by restoring a damaged, thin, or "leaky" bladder surface. Elmiron eases the pain and discomfort of IC in many patients.
Pain Medications: Anticonvulsants such as gabapentin (Neurontin), pregabalin (Lyrica), and clonazepam (Klonopin) are currently being used to treat chronic pain, as are muscle relaxants such as Valium and Flexeril. Short-acting opioid analgesics such as Vicodin and Percocet may be used to treat moderate, intermittent IC pain. OxyContin, MS-Contin, and Duragesic are longacting analgesics that are useful in treating chronic, severe IC pain.
[Brookoff D. The Causes and Treatment of Pain in Interstitial Cystitis, p. 177-192. In Sant, GR (ed ] Interstitial Cystitis. Lippincott-Raven, New York, 1997. Reprints of this article are available through the ICA.]
A combination of these treatments may be needed.
An example of an individualized treatment plan might include diet modification, combined with the regular use of a low-dose tricyclic antidepressant; Elmiron; and an opioid analgesic for breakthrough pain.
Other oral medications: Given the range of IC symptoms, additional medications may include: anticholinergics (Detrol,Ditropan XL, Levsin); H2 blockers, such as Tagamet and Zantac; urinary alkalinizing agents (Bicitra and Polycitra-K); adrenergic blockers (Cardura, Flomax and Hytrin); leukotriene inhibitors such as Singulair (montelukast); and combination urinary tract medications such as those that contain an antispasmodic, analgesic, and antiinfective.
DMSO (dimethyl sulfoxide), Rimso-50: Approved for use in IC in 1978. Instilled directly into the bladder. Believed to work as an anti-inflammatory agent. DMSO can be combined with steroids, heparin, and/or local anesthetics to form a bladder “cocktail.”
Heparin: Has both anti-inflammatory and surface protective actions. Heparin may mimic the activity of the bladder's mucous lining, temporarily "repairing" the glycosaminoglycans (GAG) layer. Heparin is also a commonly used component of bladder “cocktails.”
Cystistat: This medication is approved for use in Canada and Europe. It is not FDA-approved for use in IC in the US. It is thought to work by replacing the defective lining of the bladder.
Other bladder instillations include:
Clorpactin WCS-90 (oxychlorosene sodium) and silver nitrate. Clorpactin can be very painful and usually requires generalmanesthesia. It has been used in a diluted form in an office setting. Silver nitrate, which also requires general anesthesia, is used infrequently and is considered an outdated therapy.
- Urethral dilatation/dilation
- Urethrotomy
Laser Surgery: Has been successfully used to treat Hunner's ulcers (or patches), present in 5 to 10 percent of IC patients. No other uses for treating IC with lasers have been clinically proven, therefore laser surgery should be reserved for the ulcerative form of IC only.
External Stimulators: Several nonsurgical devices are currently on the market or in development. Worn externally, they use electrical current to treat symptoms of IC, PFD, vulvodynia, etc.
Sacral Nerve Stimulation Implants: These surgically implanted devices are approved for use in treating urinary incontinence, urgency and frequency. They are not yet FDA-approved for treating IC pain, but are currently undergoing testing for this purpose.
Surgery: Considered only as a last resort. Several types of surgeries have been used to treat IC, including bladder augmentation, urinary diversion, and construction of an internal pouch. Serious complications can result from surgery, and pain may persist after the procedure.
IMPORTANT: The following treatments are not approved by the US Food & Drug Administration for use in IC.
The following are currently under investigation for the treatment of IC: Physical Therapy; Acupuncture; Botulinum Toxin (Botox); Uracyst (chondroitin sulfate); and URG-101 (a bladder instillation).
For more information on these or any other IC research studies, please visit the Clinical Trials section of the ICA’s website at http://ichelp.org.
Markers: Of particular importance is the work on IC urinary markers. A unique protein in the urine of IC patients has been isolated. This protein, called APF (antiproliferative factor), prevents the growth of new, healthy bladder cells in IC patients. APF was not found in urine specimens from patients without any urologic symptoms or from those who have acute urinary tract infections or other urologic conditions. This protein may be directly responsible for preventing repair of the damaged epithelial lining in IC patients. In addition, heparin-binding epidermal growth factor-like growth factor (HB-EGF), known to be important for epithelial cell proliferation and wound healing, is significantly decreased in IC patient urine specimens.
The results of further research could lead to identification of agents that will suppress the production of APF, or enhance the production of HB-EGF, both resulting in the formation of a healthy bladder lining. APF may ultimately provide a non-invasive clinical test for IC. This would have a major impact on early diagnosis and treatment. [Keay SK, Szekely Z, Conrads TP, Veenstra TD, Barchi JJ Jr, Zhang CO, Koch KR, Michejda CJ. An antiproliferative factor from interstitial cystitis patients is a frizzled 8 protein-related sialoglycopeptide. Proc Natl Acad Sci U S A. 2004 Aug 10;101(32):11803-8.]
Genetics: Studies indicate a higher-than-expected prevalence of IC among first degree relatives of index IC cases, concordance among monozygotic twins for IC, and several families with IC in multiple generations. These findings are consistent with an inherited susceptibility to IC. Linkage analysis and positional cloning can be used to identify location of susceptibility gene(s) to IC. The rapid progress being made in sequencing the human genome will facilitate identification of such genes.
Related Conditions: The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), along with several other NIH agencies, announced in September of 2007 that it will commit up to $7.5 million per year starting in the summer of 2008 for a five-year project to study IC and related conditions. Related chronic pain syndromes of primary interest to the NIH Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) project are fibromyalgia, irritable bowel syndrome (IBS), and chronic fatigue syndrome, as well as additional conditions if adequate scientific justification is provided