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The Hunger Project Bolen Report
Ohm Society
Interstitial Cystitis Print E-mail
by Ron Kennedy, M.D., Santa Rosa, CA

Dr. Kennedy Definition

Interstitial cystitis (abbreviated to "IC") is a urinary bladder disease of unknown cause characterized by frequent urination ("urinary frequency"), as often as every 10 minutes, the feeling of needing to urinate ("urgency"), pressure and/or pain in the bladder and/or pelvis. Pain typically increases as the bladder fills and reduces after urination. Some patients report pain with urination, often in the urethra. Patients may also experience needing to urinate at night several times ("nocturia"), difficulty starting the urine stream, pain with sexual intercourse, and difficulty driving, travelling or working due to pain. Misdiagnosis is not uncommon, as IC can be confused with urethritis, urethral syndrome, overactive bladder, trigonitis, prostatitis. IC affects both sexes in all cultures, members of all socioeconomic strata, and all ages. Although the disease once was believed to be a condition of menopausal women, growing numbers of men and women are being diagnosed in their twenties and ven younger. IC is more common in females than in men in a ration of 10 to 1. The term "interstitial cystitis" has been debated in recent years. In recent years it has been suggested that milder cases of IC should be known as painful bladder syndrome (PBS). Thus, many journal articles referred to the condition as IC/PBS.


The wall of the bladder is protected by a layer of molecules called glycosaminoglycans (abbreviated GAG) which contain both protein and sugar. These molecules are free floating from the wall of the bladder and because they intertwine they create a layer which gives the impression of mucus, but it is not just mucus. This layer is made up mainly of two molecules, chondroitin sulfate and sodium hyaluronate. Due to their content of sulfur, they are negatively charged and they repel water. Therefore, they repel anything that might be in urine that could be noxious to the wall of the bladder. Underneath the GAG layer are the cells that make up the first layer of the bladder, the urothelium. These are packed very tightly together and they do not allow anything to go through them, even if it got through the GAG layer. In IC and for reasons that we do not understand, both the GAG layer and the urothelium beneath the GAG layer is disrupted. There is no specific cause that has been discovered for this disruption. The trigger for the disruption could be coming from the urine or could be coming from inside the wall of the bladder due to a problem that exists in the body. If it is from the urine, it could be noxious molecules or it could be repetitive small (subclinical) infections even though IC has never been associated with any one type of bacteria. Although not even a remnant of any infectious organisms have ever been found, still doctors theorize small continuous irritations from multiple urinary tract infections over the years could account for weakening of this protective layer.


It may be that the symptoms of IC have multiple causes, and that IC is several syndromes which will eventually be distinguished from each other. For example, patients with Hunner's Ulcers are believed to be the most advanced cases. These are large "wounds," believed to be larger areas of bladder wall thinning, that can be much more difficult to treat. Patients with Hunner's Ulcers may have an entirely different condition. It is estimated that only 5 to 10% of patients have these ulcers. Far more patients may experience a very mild form of IC, in which they have no visible wounds in their bladder, yet have symptoms of frequency, urgency and/or pain. Still other patients may have discomfort only in the urethra, while others have pain in the entire pelvis. Some patients may experience pelvic floor tightness and dysfunction, while others have normal muscle tone. The symptoms of IC can be misdiagnosed as a "common" bladder infection (cystitis). However, unlike cystitis, IC has not been shown to be caused by a bacterial infection, and the mis-prescribed treatment of antibiotics is ineffective, although it is possible for cystitis to complicate IC in which case antibiotics are helpful. The symptoms of IC may also initially be attributed to prostatitis and epididymitis in men and endometriosis and uterine fibroids in women).


The Pelvic Pain Urgency/Frequency (PUF) Patient Survey, created by C. Lowell Parsons, is a short questionnaire that will help doctors identify if pelvic pain could be coming from the bladder. The KCL Test, aka the Potassium Sensitivity Test, uses a mild potassium solution to test the integrity of the bladder wall. Though the latter is not specific for IC, it has been determined to be helpful in predicting the use of compounds, such as pentosan polysulphate (Elmiron), which are designed to help repair the GAG layer. The diagnosis of IC is one of exclusion, as well as a review of clinical symptoms.


The foundation of therapy is a modification of diet to help patients avoid those foods which can further irritate the damaged bladder wall. Common offenders include alcohol, coffees, teas, herbal teas, green teas, all sodas (particularly diet), concentrated fruit juices, tomatoes, citrus fruit, cranberries, the B vitamins, vitamin C, monosodium glutamate, chocolate, and potassium-rich foods such as bananas. The problem with diet triggers is that they vary from person to person: one way for a person to discover his or her own triggers is to use an elimination diet. One cuts out all foods except the basics (e.g. potatoes, bread, rice, water) and then introduces new foods one at a time. Electrodermal screening can also be helpful in identifying foods to which one is intolerant.


IC therapy usually involves the use of an agent to help repair the bladder coating (Elmiron), an antihistamine (e.g. Atarax) to help control mast cell activity and sometimes a low dose antidepressant to fight neuroinflammation. DMSO, a wood pulp extract, is the only approved bladder instillation for IC. A 25% solution has been found to be safe. Recently, the use of a "rescue instillation" composed of Elmiron or heparin, cystistat, lidocaine and sodium bicarbonate, has generated considerable excitement in the IC community because it is the first therapeutic intervention that can be used to reduce a flare of symptoms. Published studies report a 90% effectiveness in reducing symptoms. Other bladder coating therapies include Cystistat (sodium hyaluronate) and Uracyst (chondroitin). They are believed to replace the deficient GAG layer on the bladder wall. Like most other intravesical bladder treatments, this treatment may require the patient to lie for 20 - 40 minutes, turning over every ten minutes, to allow the chemical to 'soak in' and give a good coating, before it is passed out with the urine.

Pelvic floor treatments

IC clinics now evaluate the pelvic floor and/or refer patients directly to a physical therapist for a prompt treatment of pelvic floor muscle tension or weakness. Pain in the bladder and/or pelvis can trigger long term, chronic pelvic floor tension often described by women as burning, particularly in the vagina. Men with pelvic floor tension experience referred pain, particularly at the tip of the penis. In most IC patients struggling with painful sexual relations, muscle tension is the primary cause of that pain. Tender trigger points, small tight bundles of muscle, may also be found in the pelvic floor. Pelvic floor dysfunction is a new area of specialty for physical therapists. The goal is to relax and lengthen the pelvic floor muscles rather than to tighten and/or strengthen them as is the goal of therapy for patients with incontinence. Thus, traditional exercises such as Kegels can provoke pain and additional muscle tension. A specially trained physical therapist can provide direct, hands on, evaluation of the muscles, both externally and internally. The standard of treatment is an aggressive self-care regimen at home to help combat muscle tension, such as daily muscle relaxation audiotapes, stress reduction and anxiety management on a daily basis. Anxiety is often found in patients with painful conditions and can subconsciously trigger muscle tension.

Pain control

Pain control is usually necessary in the IC treatment plan. The pain of IC has been rated equivalent to cancer pain and should not be ignored. The use of a variety of traditional pain medications, including opiates, is often necessary to treat the degrees of pain. Complementary therapies such as acupuncture, massage, and biofeedback are beneficial to some patients. Even children with IC should be appropriately addressed regarding pelvic pain, and receive necessary treatment to manage it. TENS (a machine connected to sticky pads which one places on their body at certain pressure points; the TENS machine sends electrical impulses to the skin, using the human body as an 'earth'). PTNS stimulators have also been used, with varying degrees of success. This is similar to a TENS treatment, except a needle is used rather than sticky pads.

Other treatments

Bladder distensions (a procedure which stretches the bladder capacity, done under general anaesthetic) have shown some success in reducing urinary frequency and giving pain relief to patients. However, many doctors still cannot understand how this can cause pain relief. Unfortunately, the relief achieved by bladder distentions is only temporary, lasting a few months at most, and consequently it is not really viable as a long-term treatment for IC and is generally only used in extreme cases. Surgical interventions are rarely used for IC.

The information in this article is not meant to be medical advice.�Treatment for a medical condition should come at the recommendation of your personal physician.

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