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For more than a century, interstitial cystitis (IC) was thought to be a rare, bladder specific disease that affected only women.  Through slow, steady research and several false starts, IC is now considered a pelvic pain syndrome strongly linked to the bladder, the pelvic floor muscles, the bowel, the reproductive tract and/or the nervous system.

IC is defined as an unpleasant sensation (pain, pressure, discomfort) perceived to be related to the urinary bladder, associated with lower urinary tract symptoms of more than six weeks duration, with no infection or other clear causes.

Pain is the hallmark symptom, particularly as the bladder fills with urine.  Pain can also occur in the urethra, vulva, vagina, testicles, rectum and/or throughout the pelvis.  Urinary frequency is found in 92% of patients with IC, while urgency is also common.  IC patients struggling with urgency often rush to the restroom to avoid and/or reduce pain.  In contrast, overactive bladder (OAB) patients struggling with urgency run to the restroom not to reduce discomfort but to avoid leakage and/or becoming incontinent.  It’s not unusual for patients to struggle with sleep due to a constant urge to urinate (nocturia).  Intimacy may also provoke pain and discomfort (dyspareunia).

Most IC bladders look normal when a simple cystoscopy is performed.  However, when closely examined during a hydrodistention with cystoscopy, physicians often find small, bleeding wounds, also known as petechial hemorrhages or glomerulations.  About 5%-10% of patients may have larger, more painful wounds known as Hunner’s Lesions.

How is a diagnosis of IC made?
Symptoms should be present at least six weeks in the absence of infection and positive urine cultures.  An examination of the pelvis and pelvic floor muscles should be completed to look for areas of tenderness and/or painful trigger points.  Several conditions should be ruled out, including bladder infection, bladder stones, vaginitis, prostatitis and, in patients with a history of smoking, bladder cancer.

If additional testing is required, a cystoscopy is usually the first suggested.  A minor procedure performed in a doctor’s office that  allows the physician to look at the bladder to rule out other conditions that can mimic IC symptoms, such as bladder cancer or stones.  In general, most IC patients have a normal cystoscopy because it does not allow for a close examination of the bladder wall.

Hydrodistention with cystoscopy, a more difficult procedure requiring anesthesia and outpatient care, may reveal the presence of glomerulations and Hunner’s ulcers on the bladder wall.

A finding of glomerulations are suggestive of, but not specific to, a diagnosis of IC because they can occur in other bladder conditions as well. Hunner’s ulcers, on the other hand, can confirm a diagnosis of IC.

What are the treatments for IC?
Scientists have not yet found a cure for IC, nor can they predict who will respond best to which treatment.  Symptoms may disappear with a change in diet or treatments or without explanation.  Even when symptoms disappear, they may return after days, weeks, months, or years.  Scientists are still unsure why.
Because the exact causes of IC are unknown, current treatments are aimed at relieving symptoms.  Many people are helped for variable periods by one or a combination of treatments.
As researchers learn more about this chronic condition, the list of potential treatments will change, so patients should discuss their options with a doctor.

Bladder Distention
Many people with IC have noted an improvement in symptoms after a bladder distention has been done to diagnose the condition.  In many cases, the procedure is used as both a diagnostic test and initial therapy.  Researchers are not sure why distention helps, but some believe it may increase capacity and interfere with pain signals transmitted by nerves in the bladder.

Bladder Instillation
During a bladder instillation, also called a bladder wash or bath, the bladder is filled with a solution that is held for varying periods of time, averaging 10 to 15 minutes, before being emptied.
The only drug approved by the U.S. Food and Drug Administration (FDA) for bladder instillation is dimethyl sulfoxide (Rimso-50), also called DMSO.  DMSO treatment involves guiding a narrow tube called a catheter up the urethra into the bladder.  Treatments are given every week or two for 6 to 8 weeks and repeated as needed. Most people who respond to DMSO notice improvement 3 or 4 weeks after the first 6- to 8-week cycle of treatments.

Oral Drugs
Pentosan Polysulfate Sodium (Elmiron)
This first oral drug developed for IC was approved by the FDA in 1996.  In clinical trials, the drug improved symptoms in 30% of patients treated.  Doctors do not know exactly how the drug works, but one theory is that it may repair defects that might have developed in the lining of the bladder.
The FDA-recommended oral dosage of Elmiron is 100 milligrams (mg), three times a day. Patients may not feel relief from IC pain for the first 4 months.  A decrease in urinary frequency may take up to 6 months.  Patients are urged to continue with therapy for at least 6 months to give the drug an adequate chance to relieve symptoms.  If 6 months of Elmiron therapy provides no benefit, it is reasonable to stop the drug.

Other Oral Medications
Aspirin and ibuprofen may be a first line of defense against mild discomfort.  Doctors may recommend other drugs to relieve pain.
Some people have experienced improvement in their urinary symptoms by taking tricyclic antidepressants or antihistamines.  A tricyclic antidepressant called amitriptyline (Elavil) may help reduce pain, increase bladder capacity, and decrease frequency and nocturia.  Some people may not be able to take it because it makes them too tired during the day.  In people with severe pain, narcotic analgesics such as acetaminophen (Tylenol) with codeine or longer-acting narcotics may be necessary.
All drugs—even those sold over the counter—have side effects. A person should always consult a doctor before using any drug for an extended amount of time.

Electrical Nerve Stimulation
Mild electrical pulses can be used to stimulate the nerves to the bladder—either through the skin or with an implanted device. The method of delivering impulses through the skin is called transcutaneous electrical nerve stimulation (TENS).

TENS is relatively inexpensive and allows people with IC/PBS to take an active part in treatment. Within some guidelines, the patient decides when, how long, and at what intensity TENS will be used. It has been most helpful in relieving pain and decreasing frequency in people with Hunner’s ulcers. Smokers do not respond as well as nonsmokers.

Scientific evidence links diet to IC/PBS, but many patients find that alcohol, tomatoes, spices, chocolate, caffeinated and citrus beverages, and high-acid foods may contribute to bladder irritation and inflammation.  Some people also note that their symptoms worsen after eating or drinking products containing artificial sweeteners. Eliminating various items from the diet and reintroducing them one at a time may determine which, if any, affect a person’s symptoms. However, maintaining a varied, well-balanced diet is important.

Many people feel smoking makes their symptoms worse. How the by-products of tobacco that are excreted in the urine affect IC is unknown. Smoking, however, is a major cause of bladder cancer. One of the best things smokers can do for their bladder and their overall health is to quit.

Many patients feel that gentle stretching exercises help relieve IC/PBS symptoms.

Bladder Training
People who have found adequate relief from pain may be able to reduce frequency by using bladder training techniques. Methods vary, but basically patients decide to void—empty their bladder—at designated times and use relaxation techniques and distractions to keep to the schedule. Gradually, they try to lengthen the time between scheduled voids. A diary in which to record voiding times is helpful in keeping track of progress.

Physical Therapy
New evidence indicates that certain types of physical therapy, when administered by an experienced physical therapist, may improve IC/PBS symptoms. Patients should discuss this option with their health care provider.

Surgery should be considered only if all available treatments have failed and the pain is disabling. Many approaches and techniques are used, each of which has advantages and complications that should be discussed with a surgeon. A doctor may recommend consulting another surgeon for a second opinion before taking this step. Most surgeons are reluctant to operate because some people still have symptoms after surgery.

Two procedures—fulguration and resection of ulcers—can be done with instruments inserted through the urethra.  Fulguration involves burning Hunner’s ulcers with electricity or a laser.  When the area heals, the dead tissue and the ulcer fall off, leaving new, healthy tissue behind. Resection involves cutting around and removing the ulcers.  Both treatments are done under anesthesia and use special instruments inserted into the bladder through a cystoscope. Laser surgery in the urinary tract should be reserved for people with Hunner’s ulcers and should be done only by doctors with the special training and expertise needed to perform the procedure.

For an appointment or consultation with Dr. Gary Bellman,
please contact the office or call 818-912-1899