What is Interstitial Cystitis / Painful Bladder Syndrome?

What is IC / PBS? 

Interstitial cystitis (IC) is a condition that results in recurring discomfort or pain in the bladder and the surrounding pelvic region. People may experience mild discomfort, pressure, tenderness, or intense pain in the bladder and pelvic area. Symptoms may include an urgent need to urinate (urgency), a frequent need to urinate (frequency), or a combination of these symptoms. Pain may change in intensity as the bladder fills with urine or as it empties. Women’s symptoms often worsen during menstruation. They may sometimes experience pain with vaginal intercourse. IC / PBS is far more common in women than in men.

What causes IC? 

Some of the symptoms of IC / PBS resemble those of bacterial infection, but medical tests reveal no organisms in the urine of patients with IC / PBS. Furthermore, patients with IC / PBS do not respond to antibiotic therapy. Researchers are working to understand the causes of IC / PBS and to find effective treatments.

In recent years, researchers have isolated a substance found almost exclusively in the urine of people with interstitial cystitis. They have named the substance antiproliferative factor, or APF, because it appears to block the normal growth of the cells that line the inside wall of the bladder. Researchers anticipate that learning more about APF will lead to a greater understanding of the causes of IC and to possible treatments.

Researchers are beginning to explore the possibility that heredity may play a part in some forms of IC. In a few cases, IC has affected a mother and a daughter or two sisters, but it does not commonly run in families.

How is IC / PBS diagnosed? 

Because symptoms are similar to those of other disorders of the urinary bladder and there is no definitive test to identify IC / PBS, doctors must rule out other treatable conditions before considering a diagnosis of IC / PBS. The most common of these diseases in both genders are urinary tract infections and bladder cancer. IC / PBS is not associated with any increased risk in developing cancer. In men, common diseases include chronic prostatitis or chronic pelvic pain syndrome.

The diagnosis of IC / PBS in the general population is based on

• Presence of pain related to the bladder, usually accompanied by frequency and urgency
• Absence of other diseases that could cause the symptoms

Diagnostic tests that help in ruling out other diseases include urinalysis, urine culture, cystoscopy, a biopsy of the bladder wall, distention of the bladder under anaesthesia, urine cytology, and laboratory examination of prostate secretions.

Treatment - Electrical Nerve Stimulation

TENS is relatively inexpensive and allows the patient 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 patients with Hunner's ulcers. If TENS is going to help, improvement is usually apparent within three to four months.

Click here to see our Pelvic & Period Pain Range. 

Treatment - Drugs

Aspirin and ibuprofen may be the first line of defence against mild discomfort. Doctors may recommend other drugs to relieve pain. Although the latter takes between two and four months for the pain to subside and up to six months to alleviate all symptoms.

Some patients have experienced improvement in their urinary symptoms by taking tricyclic antidepressants or antihistamines. Tricyclic antidepressants or antihistamines may help to reduce pain, increase bladder capacity, and decrease frequency and Nocturia. Some patients may not be able to take it because it makes them too tired during the day. In patients with severe pain, narcotic analgesics such as acetaminophen (Tylenol) with codeine or longer-acting narcotics may be necessary.

Diet 

There is no scientific evidence linking diet to IC / PBS, but many doctors and patients find that alcohol, tomatoes, spices, chocolate, caffeinated and citrus beverages, and high-acid foods may contribute to bladder irritation and inflammation. Some patients also note that their symptoms worsen after eating or drinking products containing artificial sweeteners.

Smoking

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

Exercise

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

Bladder Training

Training the bladder to empty at designated times and use relaxation techniques and distractions to keep to the schedule. Gradually, patients try to lengthen the time between scheduled emptying of the bladder.

Surgery 

There are two procedures; fulguration and resection of ulcers. This is 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 anaesthesia and use special instruments inserted into the bladder through a cystoscope. Laser surgery in the urinary tract should be reserved for patients with Hunner's ulcers and should be done only by doctors who have had special training and have the expertise needed to perform the procedure.

Another surgical treatment is augmentation, which makes the bladder larger. In most of these procedures, scarred, ulcerated, and inflamed sections of the patient's bladder are removed, leaving only the base of the bladder and healthy tissue. A piece of the patient's colon (large intestine) is then removed, reshaped, and attached to what remains of the bladder. After the incisions heal, the patient may void less frequently. The effect on pain varies greatly; IC / PBS can sometimes recur on the segment of the colon used to enlarge the bladder.

Even in carefully selected patients—those with small, contracted bladders—pain, frequency, and urgency may remain or return after surgery, and patients may have additional problems with infections in the new bladder and difficulty absorbing nutrients from the shortened colon. Some patients are incontinent, while others cannot void at all and must insert a catheter into the urethra to empty the bladder.

A surgical variation of TENS, called sacral nerve root stimulation, involves permanent implantation of electrodes and a unit emitting continuous electrical pulses. Studies of this experimental procedure are now underway.

Bladder removal, called a cystectomy, is another, very infrequently used, surgical option. Once the bladder has been removed, different methods can be used to reroute the urine. In most cases, ureters are attached to a piece of colon that opens onto the skin of the abdomen. This procedure is called a urostomy and the opening is called a stoma. Urine empties through the stoma into a bag outside the body. Some urologists are using a second technique that also requires a stoma but allows urine to be stored in a pouch inside the abdomen. At intervals throughout the day, the patient puts a catheter into the stoma and empties the pouch. Patients with either type of urostomy must be very careful to keep the area in and around the stoma clean to prevent infection. Serious potential complications may include kidney infection and small bowel obstruction.

A third method to reroute urine involves making a new bladder from a piece of the patient's colon and attaching it to the urethra. After healing, the patient may be able to empty the newly formed bladder by voiding at scheduled times or by inserting a catheter into the urethra. Only a few surgeons have the special training and expertise needed to perform this procedure.

Are there any special concerns?

Cancer: There is no evidence that IC / PBS increases the risk of bladder cancer.

Pregnancy: Researchers have little information about pregnancy and IC / PBS but believe that the disorder does not affect fertility or the health of the foetus. Some women find that their IC / PBS goes into remission during pregnancy, while others experience a worsening of their symptoms.

Coping: The emotional support of family, friends, and other people with IC / PBS is very important in helping patients cope. Studies have found that patients who learn about the disorder and become involved in their own care do better than patients who do not. See the Interstitial Cystitis Association of Americas website to find a group near you.