What is IC (Interstitial Cystitis) / PBS (Painful Bladder Syndrome)?
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.
What causes IC?
Some of the symptoms of Interstitial Cystitis / Painful Bladder Syndrome resemble those of bacterial infection, but medical tests reveal no organisms in the urine of patients with Interstitial Cystitis / Painful Bladder Syndrome. Furthermore, patients with Interstitial Cystitis / Painful Bladder Syndrome do not respond to antibiotic therapy. Researchers are working to understand the causes of Interstitial Cystitis / Painful Bladder Syndrome and to find effective treatments.
In recent years, researchers have isolated a substance found almost exclusively in the urine of people with IC. They have named the substance antiproliferative factor (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 Interstitial Cystitis and to possible treatments.
Researchers are beginning to explore the possibility that heredity may play a part in some forms of Interstitial Cystitis. In a few cases, Interstitial Cystitis 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 because there is no definitive test to identify Interstitial Cystitis / Painful Bladder Syndrome, doctors must rule out other treatable conditions before considering a diagnosis of Interstitial Cystitis / Painful Bladder Syndrome. The most common of these diseases in both genders are urinary tract infections and bladder cancer. Interstitial Cystitis / Painful Bladder Syndrome 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 Interstitial Cystitis / Painful Bladder Syndrome in the general population is based on
- Presence of pain related to the bladder, usually accompanied by urgency and frequency
- Absence of other diseases that could cause the symptoms
Diagnostic tests that help in ruling out other diseases include urinalysis, urine culture, cystoscopy, biopsy of the bladder wall, distention of the bladder under anesthesia, urine cytology, and laboratory examination of prostate secretions.
Treatment – Transcutaneous 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 Transcutaneous Electrical Nerve Stimulation will be used. It has been most helpful in relieving pain and decreasing frequency in patients with Hunners ulcers. If TENS is going to help, improvement is usually apparent in 3 to 4 months.
Treatment – Drugs
Ibuprofen and Aspirin may be a first line of defense against mild discomfort. Although the latter takes between 2 – 4 months for the pain to subside and up to 6 months to alleviate all symptoms.
Some patients have experienced improvement in their urinary symptoms by taking antidepressants (amitriptyline) antihistamines or tricyclic. Amitriptyline may help to increase the size of the bladder, reduce pain 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 longer acting narcotics or acetaminophen (Tylenol) with codeine may be necessary.
There is no scientific evidence linking diet to IC / PBS, but many doctors and patients find that tomatoes, alcohol, 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.
Many patients feel that smoking worsens the symptoms. How the by-products of tobacco that are excreted in the urine affect Interstitial Cystitis / Painful Bladder Syndrome 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.
Many patients feel that gentle stretching exercises help relieve Interstitial Cystitis / Painful Bladder Syndrome symptoms.
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.
There are two procedures; resection of ulcers and fulguration. This is done with instruments inserted through the urethra. Fulguration involves burning Hunners 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 Hunners 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, ulcerated, scarred and inflamed sections of the patients bladder are removed, leaving only the base of the bladder and healthy tissue. A piece of the patients colon 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; Interstitial Cystitis / Painful Bladder Syndrome can sometimes recur on the segment of colon used to enlarge the bladder.
Even in carefully selected patients; 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 Transcutaneous Electrical Nerve Stimulation (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 under way.
Bladder removal, called a cystectomy, is another surgical option. Once the bladder has been removed, different methods can be used to reroute the urine. Most of the time, 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.
Are there any special concerns?
Cancer There is no evidence that Interstitial Cystitis / Painful Bladder Syndrome 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 Interstitial Cystitis / Painful Bladder Syndrome goes into remission during pregnancy, while others experience a worsening of their symptoms.
Coping The emotional support of friends, family 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.