An Introduction to Interstitial Cystitis (IC)
Interstitial Cystitis (IC) is a chronic inflammatory condition of the bladder. Its cause is unknown.. IC can affect people of any age, race or sex. It is, however, most commonly found in women. Recent epidemiological data suggest that there may be greater than 700,000 cases of IC in the US.
Some or all of these symptoms may be present: FREQUENCY, URGENCY and PAIN. OTHER DISORDERS also include muscle and joint pain, migraines, allergies and gastrointestinal problems.
Most IC patients have difficulty obtaining a diagnosis. The effect of IC on an individual’s life should not be underestimated. IC can be debilitating and may cause the patient to experience feelings of helplessness and despair.
Today, more than ever before, there is an improved understanding and awareness of IC by the medical community and the public at large. If you believe you have these symptoms, you should schedule and appointment with a Urologist.
What is Interstitial Cystitis?
Interstitial Cystitis (IC), is a pelvic pain disorder that can consist of symptoms related to the bladder and muscles of the pelvic floor. These symptoms can include any combination of frequent, urgent, or painful urination, pelvic pain, and painful intercourse.
There are many theories as to the cause of IC. One prominent theory relating to the bladder symptoms has to do with the cells lining the inside of the bladder. The natural internal lining of the bladder is protected from toxins in the urine by a layer of protein called glycoaminoglycan. In IC this protective layer may be broken down, allowing toxins to irritate the bladder wall. The bladder then may become inflamed and tender and cannot store urine well. Another theory is that IC is an autoimmune response following a bladder infection. Others believe that a bacterium may be present in bladder cells but not detectable through routine urine tests. Some scientist have suggested that certain substances in urine may be irritating to people with IC, but no substance unique to people with IC has as yet been isolated. Researchers are beginning to explore the possibility that heredity may play a part in some forms of IC but as yet no gene has be implicated as a cause.
IC is more common in females. In fact, 90 % of all diagnosed cases are in women. The age at which the disease first appears varies from 20-65, but these limits are not absolute. The average onset of symptoms is around age 40, but 25% of patients are under the age of 30 at the time of diagnosis. It is not known why the disorder is so much more common in women and because of the variability of symptoms it is considered to be one of the more frequently misdiagnosed and under diagnosed problems we see in urology.
Early in the disease process, IC closely resembles a bladder infection. Women can complain of longstanding pain in the lower abdomen, supra-pubic and or perineal pain, feeling like they have a bladder infection, frequent urination during day and night and pain associated with sexual relations. Women may suffer increased vulvar pain and may experience pain the perineum. The symptoms may intensify as the bladder fills and diminish after urination and the pain often gets worse during menstruation. For men, symptoms may include pain and inflammation of the prostate (prostatitis) and ejaculation may be painful.
The symptoms of IC do not go away on their own, but may persist for a long time and even get worse. Symptoms usually worsen within the first 5 years and then level off. Patients with IC typically experience a period of symptom flare, or intensification, followed by periods of remission.
Other conditions often found in association with IC include asthma, endometriosis, food allergies, hay fever, incontinence, irritable bowel syndrome, lupus, migraine, rheumatoid arthritis and sinusitis. The connection between IC and these conditions is not understood but researchers are working hard to understand the causes of IC and to find effective treatments.
Because symptoms are similar to those of other disorders of the urinary system and because there is not a definitive test to identify IC, doctors must rule out other conditions before considering a diagnosis of IC. The usual urine analysis and cultures typically do not show anything abnormal in patients with IC, although a small amount of red blood cells, i.e. blood may be found. In men, prostatic fluid may also be cultured.
A Cystoscopy, performed under general anesthesia, is often used to evaluate patients for IC. In this setting the bladder is stretched with the addition of water. The stretched bladder allows a better visualization of the bladder wall by a urologist who can examine the epithelium with a small, telescopic fiber-optic camera, or scope that is inserted through the urethra into the bladder. Using cystoscopy a Urologist may detect bladder wall inflammation, a thick stiff bladder wall or Hunners ulcers. Glomerulations (tiny hemorrhages that can be signs of IC) may also be revealed while the bladder is stretched to capacity. These hemorrhages may be present in up to 95% of IC cases.
A biopsy of the bladder, in which a tissue sample is removed and analyzed, is performed to distinguish between ulcers and cancer and to evaluate the presence of mast cells, which are sometimes seen in abundance in IC-affected bladders. Some IC sufferers do not have epithelial glomerulations or ulcers.
There is no cure for IC. The goal of the treatment is to relieve symptoms. Most people are helped for a variable period by one or a combinations of treatments. Treatment usually includes one or more of the following:
Elmiron® which received FDA approval in 1996. It is the only oral medication approved specifically for use in IC. It is believed to work by repairing a thin or damaged bladder lining. It may take up to 6 months to provide relief from symptoms.
Though not approved by the FDA for the treatment of IC, the following medications have also been useful for treating the condition. These include tricyclic antidepressants such as amitriptyline (Elavil®, based on their analgesic and sedative properties; anti-inflammatory agents, antispasmodics, antihistamines and muscle relaxants. Pain medication may have a soothing effect, especially the non steroid anti inflammatory drugs (Advil®), (Celebrex®). It is becoming clear that IC is not a disease on its own. Medication targeted at the whole body auto immune disorder may also have a positive effect on IC. Plaquenil that has been used in rheumatic diseases has been show to help against IC. All drugs, even those sold over the counter have side effects. Patients should always consult a doctor before using any drug for an extended time.
Because many patients have noted an improvement in symptoms after a bladder distention has been done to diagnose IC, the procedure is often thought of as one of the first treatment attempts.
This includes bladder distention (stretching the bladder by filling it with water under general anesthesia), and the instillation of DMSO, Rimso-50® (a medication instilled directly into the bladder), or a mixture of other medications. Blood, Liver, kidney test are required every 6 month during DMSO therapy. Cystistat® and BCG are undergoing clinical trials for IC treatment and are not widely available in the US.
There is no scientific evidence linking diet to IC, but many doctors and patients find that eliminating certain foods (acidic, spicy) may decrease the severity of IC symptoms. Also, smoking, drinking caffeine and alcoholic beverages may aggravate IC. Most IC patients have the least amount of trouble with rice, potatoes, pasta, vegetables and chicken. Some of the over the counter dietary aids such as Prelief® help to make the food less acidic.
Bladder training has also been used as a method to reduce frequency by using bladder training techniques. Methods vary, but patients decide to void at designated times and use relaxation techniques and distractions to keep to the schedule. Gradually, patients try to lengthen the time between scheduled voids.
With Transcutaneous Electrical Nerve Stimulation, mild electric pulses enter the body for minutes to hours two or more times a day. It is believed that the electric pulses increase blood flow to the bladder, strengthen pelvic muscles that aid in control and trigger pain blocking hormones. The unit is worn outside the body.
Surgery is typically performed only when other treatments fail to provide relief. Many approaches and techniques are used, each of which has its own advantages and complications that should be discussed with a Urologist. Many doctors are reluctant to operate because the outcome is uncertain and some people still have symptoms after the surgery. Below is a list of surgeries that can be considered:
- SACRAL NERVE STIMULATION with the InterStim® device
- fulguration and resection of ulcers
- augmentation of the bladder
- Bladder removal or Cystectomy