Interstitial cystitis(cystoscopic appearance) Normal Bladder(cystoscopic appearance)
Interstitial cystitis (IC) is a condition that results in recurring discomfort or pain in the bladder and the surrounding pelvic region. The symptoms vary from case to case and even in the same individual. 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 get worse during menstruation. They may sometimes experience pain with vaginal intercourse.
Because IC varies so much in symptoms and severity, most researchers believe that it is not one, but several diseases. In recent years, scientists have started to use the term painful bladder syndrome (PBS) to describe cases with painful urinary symptoms that may not meet the strictest definition of IC. The term IC / PBS includes all cases of urinary pain that can't be attributed to other causes, such as infection or urinary stones. The term interstitial cystitis, or IC, is used alone when describing cases that meet all of the IC criteria established by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).
In IC / PBS, the bladder wall may be irritated and become scarred or stiff. Glomerulations (pinpoint bleeding caused by recurrent irritation) often appear on the bladder wall. Hunner's ulcers are present in 10 percent of patients with IC. Some people with IC / PBS find that their bladders cannot hold much urine, which increases the frequency of urination. Frequency, however, is not always specifically related to bladder size; many people with severe frequency have normal bladder capacity. People with severe cases of IC / PBS may urinate as many as 60 times a day, including frequent nighttime urination (nocturia).
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.
Because symptoms are similar to those of other disorders of the urinary bladder and because 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
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.
The doctor may perform a cystoscopic examination in order to rule out bladder cancer. During cystoscopy, the doctor uses a cystoscope—an instrument made of a hollow tube about the diameter of a drinking straw with several lenses and a light—to see inside the bladder and urethra. The doctor might also distend or stretch the bladder to its capacity by filling it with a liquid or gas. Because bladder distention is painful in patients with IC / PBS, they must be given some form of anesthesia for the procedure.
The doctor may also test the patient's maximum bladder capacity—the maximum amount of liquid or gas the bladder can hold. This procedure must be done under anesthesia since the bladder capacity is limited by either pain or a severe urge to urinate
Potassium sensitivity test (PST):
An 8F to 12F catheter is placed into the bladder. A control solution of 40 mL of water (or normal saline) is instilled and held for a 5-minute period. Patients are asked to rank their sense of urinary urgency on a 6-point analog scale. They are also asked separately to rank their sense of pain on the analog scale. The bladder is then drained. A 0.4 M potassium solution is instilled into the bladder and held for a 5-minute period. After 5 minutes, patients are asked to rank their sense of urinary urgency and pain on the same analog scale. They are also asked to contrast the differences between solutions 1 and 2 and to rank how strongly the solutions differ. The bladder is drained.
In approximately 40% of patients with IC to whom I have administered this test, the pain on administration of the potassium solution is quick and intense.The test obviously provokes symptoms. For such patients, the result is considered positive and the bladder should be drained immediately.
Scientists have not yet found a cure for IC / PBS, nor can they predict who will respond best to which treatment. Symptoms may disappear without explanation or coincide with an event such as a change in diet or treatment. Even when symptoms disappear, they may return after days, weeks, months, or years. Scientists do not know why.
Because the causes of IC / PBS are unknown, current treatments are aimed at relieving symptoms. Many people are helped for variable periods by one or a combination of the treatments. As researchers learn more about IC / PBS, the list of potential treatments will change, so patients should discuss their options with a doctor.
Many patients have noted an improvement in symptoms after a bladder distention has been done to diagnose IC / PBS. 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 that it may increase capacity and interfere with pain signals transmitted by nerves in the bladder. Symptoms may temporarily worsen 24 to 48 hours after distention, but should return to predistention levels or improve within 2 to 4 weeks.
Cystistat is approved by Health Canada as well as the competent Health Authorities of the European Union, Norway, Switzerland, China and other countries for the temporary replacement of the GAG layer. Cystistat is instilled in a safe and simple procedure directly into the bladder.
By temporarily replacing the GAG layer in a patient's bladder, Cystistat helps to relieve pain and the urgent need to urinate that is a common symptom among patients with interstitial cystitis. Cystistat must be administered by qualified medical personnel, usually urologists. Cystistat is also showing a preventive effect in bacterial cystitis and radiation-induced cystitis.
Action And Clinical Pharmacology: The glycosaminoglycan (GAG) layer on the luminal surface of the bladder wall is believed to provide a protective barrier against microorganisms, carcinogens, crystals and other agents present in the urine and has been identified as the primary defense mechanism in protecting the transitional epithelium from urinary irritants. Deficiencies in this GAG layer of the bladder epithelium may destroy its barrier function and allow the adherence of bacteria, microcrystals, proteins and ions, or the movement of ionic and nonionic solute residues (i.e., urea) across the epithelium. Hyaluronate has been developed to temporarily replenish the deficient GAG layer on the bladder epithelium. The active substance is a specific hyaluronic acid fraction of defined molecular chain length.
This first oral drug developed for IC was approved by the FDA in 1996. In clinical trials, the drug improved symptoms in 30 percent of patients treated. Doctors do not know exactly how it 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 mg, three times a day. Patients may not feel relief from IC pain for the first 2 to 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.
Elmiron's side effects are limited primarily to minor gastrointestinal discomfort. A small minority of patients experienced some hair loss, but hair grew back when they stopped taking the drug. Researchers have found no negative interactions between Elmiron and other medications.
Elmiron may affect liver function, which should therefore be monitored by the doctor.
Because Elmiron has not been tested in pregnant women, the manufacturer recommends that it not be used during pregnancy, except in the most severe cases.
Aspirin and ibuprofen may be a first line of defense against mild discomfort. Doctors may recommend other drugs to relieve pain.
Some patients have experienced improvement in their urinary symptoms by taking tricyclic antidepressants (amitriptyline) or antihistamines. Amitriptyline 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 with codeine or longer acting narcotics may be necessary.
With transcutaneous electrical nerve stimulation (TENS), mild electric pulses enter the body for minutes to hours two or more times a day either through wires placed on the lower back or just above the pubic area, between the navel and the pubic hair, or through special devices inserted into the vagina in women or into the rectum in men. Although scientists do not know exactly how TENS relieves pelvic pain, it has been suggested that the electrical pulses may increase blood flow to the bladder, strengthen pelvic muscles that help control the bladder, or trigger the release of substances that block pain.
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. Smokers do not respond as well as nonsmokers. If TENS is going to help, improvement is usually apparent in 3 to 4 months.
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. Patients may try eliminating various items from their diet and reintroducing them one at a time to determine which, if any, affect their symptoms. However, maintaining a varied, well balanced diet is important.
The IC Diet: A list of problem food.
There are a variety of lists floating around the IC community which document some of the diverse IC food irritants. Many lists are similar, yet not identical. Whether or not a particular food is listed is sometimes a matter of the beliefs, priorities, or personal experience of the author(s).
The problem foods we've listed below are the most common ones that thousands of IC patients have reported trouble with. Your goal is to determine IF these foods irritate you, perhaps by using an elimination diet! If you are like most, you'll probably be able to eat a few of the foods listed as "problematic". You also might have to avoid a few others listed as "okay". Remember, this list is only a rough guide. Be prepared to be creative with your meals and in your kitchen!
Please note: About 15% of women with IC also have vulvar pain (vulvodynia). Some of the foods in the "May Be Okay" column have high levels of oxalates, which women with vulvodynia react to. Those who don't have vulvodynia typically don't react to the oxalates, so they may have a much easier time getting away with foods in the "May Be Okay" column.
USUALLY OK |
MAY BE OK |
USUALLY PROBLEMATIC |
|
Beverages |
chamomile herb tea |
alfalfa tea |
beer |
Grain |
buckwheat |
amaranth |
bread or cereal w/ |
Fats |
butter |
almonds |
filberts |
Soups |
homemade soups |
Health Valley® chicken broth |
bouillion cubes |
Meat, Fish |
beef |
anchovies |
bologna |
Cheeses and |
cream cheese |
buttermilk |
aged cheeses |
Vegetables |
broccoli |
avocado |
chili peppers |
Fruits |
dates w/o |
bananas |
apricots |
Desserts |
brown sugar |
banana bread |
acesulfame K |
Seasonings |
allspice |
black pepper |
ascorbic acid |
These foods win our vote as the biggest misery makers for people with IC! These are the foods we hear about from IC patients all the time. Of course just because they cause trouble for so many others, that doesn't guarantee they'll make you miserable too. But if you do eat these, watch out! Be sure to pay close attention to how you feel afterwards. If you feel worse, then there is a good chance that this is a trigger food for you. Information is power. Whenever possible, talk with other patients and compare your trigger foods. They may help you discover some hidden triggers in your own diet.
#1: Coffees and Teas
Yes, we know that "lattes" are all the rage these days. Coffee is, regrettably, our number one bladder irritant. In a sensitive bladder, the acid, caffeine and tannins in coffees have little competition for causing intense irritation and discomfort. In our experience, the patients who seem to struggle the most with symptoms are those who still have that one cup of coffee (or tea) in the morning.
Is decaf coffee safe?? For most patients in flares, it isn't. A decaffeinated coffee is still very high in acid and can provoke symptoms. There are a number of herbal coffees, such as Cafix or Pero, that patients have reported to enjoy. There are also low acid coffees, such as Euromild & Puroast, that may be more tolerable. If you're struggling with IC symptoms and/or a flare, the safest hot drink is hot water and honey!
Teas can be surprisingly irritating to the bladder. A regular tea, such as Earl Grey, is usually out of the question. Remember, just as with coffees, decaf regular teas can still provoke symptoms. Herbal teas, particularly herbal blends, are also notorious for triggering symptoms due to the acidity added from other herbs, such as rosehips. Despite the hype, green tea is so acidic that it can create agonizing pain for some. If you're a tea lover, we suggest that you try a plain organic or mint tea!
You can find a wide variety of low acid, IC Friendly coffees, herbal coffees & teas in the Health Shop!
#2: Cranberry & Other Fruit Juices
Otherwise known as the ACID BOMB when it hits, cranberry juice may be the biggest bladder irritant in an IC patient's diet. It's often recommended for consumption during urinary tract infections because it is believed to have substances in it that help keep bacteria from sticking to the bladder wall. (If they can't stick, they can't infect. They just get flushed out). But cranberry juice can VERY be difficult for an IC bladder to tolerate. Citrus juices such as orange juice, grapefruit juice, lemonade, will also be very irritating to the bladder. If you're desperate for a juice, we recommend trying a Baby Pear or Apple Juice. Baby juices do not use as much citric acid and seem to be much more bladder friendly!
#3: Carbonated beverages
If we had $1 for everytime a patient reported that they had a flare from drinking a diet cola, we'd be rich today! Whether it be plain carbonated Perrier water or flavored sodas, IC patients often complain about their irritating effects on the bladder. The biggest problem appears to be the acid, though most flavored sodas also have big doses of caffeine.
The most difficult carbonated beverage for an IC bladder to tolerate appears to be diet cola. Diet colas are a quadruple whammy of acidic carbonation, citric and other acids, caffeine, and artificial sweeteners-- four well-known bladder irritants. Taken all at once it can be an IC bladder's nightmare! If you must have a soda, try a non-diet, usually non-caffeinated, root beer-- and load the cup with plenty of ice to dilute it!
#4: Tomato Products
They're found in so many foods these days, tomatoes and tomato products are darn hard to avoid. Though we think of them as mild mannered vegetables, those tempting red globes are really a very acidic fruit. A few IC patients can tolerate tomato sauces on pizzas and pasta, but most cannot. Low acid tomatoes may be good substitutes for some people. The book A Taste of the Good Life: A Cookbook for an Interstitial Cystitis Diet, has a lengthy list of lower-acid tomato varieties you can grow at home!
#5: Multivitamins
Multivitamins are notoriously irritating to the IC bladder due to both the Vitamin C (Ascorbic Acid) and Vitamin B6. Unless you require multivitamins for another medical condition, we suggest that stop any multivitamins to determine if they are irritating your bladder.
#6: Tobacco
Ok, we admit it, we cheated to get this one on the list... tobacco isn't really a food. But it does have some significant effects on an IC bladder. For one, it acts to constrict the bladder's blood vessels, interfering with the body's natural way of washing out inflammatory substances from the bladder tissues. Veteran IC patients prefer less pain rather than more. Is that cigarette worth a night and day of pain?
The two hardest foods to give up
As a support group leader, every once in a while I encounter an IC patient who, despite their horrible, continuous pain, insists on drinking coffee and/or eating chocolate bars. Coffee and chocolate are among the most common comfort foods. We depend on these to wake up, soothe our bad mood, or just give us a cheerful lift. In addition to caffeine, these both have a load of substances any one of which can potentially affect an IC bladder.
For me, as an IC patient, it was a choice between pain and frequency or coffee. I chose not to be in pain. But, still, some coffee addicts insist that they can drink coffee and not experience discomfort.I say, PROVE IT!
The only way to know if coffee, chocolate, (or any other comfort food) bothers your bladder is to do your own research! How? Complete a voiding diary for a few days, WITH COFFEE AND CHOCOLATE, in your diet. Then, keep the same diary and avoid drinking and/or eating either for a week!
If your voiding diary shows that you urinate less and/or are in less pain when you're not consuming them, then they are clearly irritating you! Do you need any more evidence than that?
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.
Many patients feel that gentle stretching exercises help relieve IC / PBS symptoms.
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 its own advantages and complications that should be discussed with a surgeon. Your doctor may recommend consulting another surgeon for a second opinion before taking this step. Most doctors are reluctant to operate because the outcome is unpredictable: Some people still have symptoms after surgery.
People considering surgery should discuss the potential risks and benefits, side effects, and long- and short-term complications with a surgeon and with their family, as well as with people who have already had the procedure. Surgery requires anesthesia, hospitalization, and weeks or months of recovery. As the complexity of the procedure increases, so do the chances for complications and for failure.
To locate a surgeon experienced in performing specific procedures, check with your doctor.
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 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 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 under way.
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.
Even after total bladder removal, some patients still experience variable IC / PBS symptoms in the form of phantom pain. Therefore, the decision to undergo a cystectomy should be made only after testing all alternative methods and after seriously considering the potential outcome.
There is no evidence that IC / PBS increases the risk of bladder cancer.
Researchers have little information about pregnancy and IC / PBS but believe that the disorder does not affect fertility or the health of the fetus. Some women find that their IC / PBS goes into remission during pregnancy, while others experience a worsening of their symptoms.
Consultant Urological Surgeon
University hospital
Galway Clinic
Bons Secours