Patient Information: Interstitial Cystitis
Based on information of the 'Interstitial Cystitis Patient Group ICP'
and the Interstitial Cystitis Association
On this page you may find an answer to a number of your questions on Interstitial Cystitis, or IC. A summary on the signs and symptoms of IC, its known causes and possible treatment is provided. The term Interstitial Cystitis is most widely used, although some may refer to the same disease as 'bladder pain syndrome'. All names refer to a disease that involves an inflammation of the connective tissue in the bladder wall without an effect on the superficial mucosal layer and without a bacterial infection.
What is Interstitial Cystitis?
Interstitial Cystitis is a chronic inflammatory condition of the bladder wall. From published literature and backed by experience, it has become clear that Interstitial Cystitis occurs most often in females: about 90 percent of all cases.
The age at which the disease manifests itself varies from 20 to 65, but these limits are not absolute and IC may occur at any age. The average onset os symptoms is 40, while 25 percent are under the age of 30. Although not rare, the total percentage of the population suffering from IC is low; a survey in the Netherlands found a few thousand cases on a total population of 16 million. There are an estimated 450,000 American victims.
In the beginning of the disease, IC closely resembles a bladder infection:
- longstanding pain in the lower abdomen, suprapubic and/or perineal; a feeling like a bladder infection
- frequent urination during day and night
- antibiotics won't help and are useless
- the urine usually looks normal, but a little blood may be found in it under the microscope
Most patients are female, while most have a long history of urinary, i.e. bladder, problems. The general practitioner, and even the urologist, may not be familiar with the disease or have not thought about it as a possibility. Since urine tests, like strips or cultures, show normal urine, the doctor may think that the bladder is not the source of the problem. If IC is suspected, then the patient should be referred to a urologist for further analysis.
Many patients have other health problems or will develop those in the future, like:
- pain in the joints
- muscle pain
- irritation of the eyes
- dryness of the mouth
- intolerance to certain medication
- various other health problems
The bladder symptoms seem to point to a recurrent or chronic urinary infection (a bladder infection, cystitis), but bacteria, that exist in the urine in case of an infection, are not found. Although bacteria are sometimes found in IC, these do not seem to have any importance as a possible cause.
It seems most probable that the cause of IC may be a so called auto-immune reaction, in which the defense system of the body is targeted against normal bladder tissue.
Sometimes, IC is seen to occur spontaneously, but surgery of the bladder or a pregnancy are also mentioned as possible factors in its development. Suddenly, the defense system of the body starts acting against the connective tissue of the bladder wall, resulting in an auto-immune inflammation. The symptoms do not pass, but may persist for a long time and even get worse. A stabbing, burning pain in the lower abdomen, which may radiate to the back and the vagina, is the result. Intercourse may get painful or even impossible.
Urinating relieves the pain and makes the patient feel better. This causes the patient to go to the toilet often, even at night, in turn causing a disruption of a normal sleeping pattern. Travel and social visits may also be impaired. The fun of going out with friends or family will often be overshadowed by the question whether enough toilet facilities are available. The patient will start to feel uneasy outside her/his own home.
Unfortunately, the diagnosis of IC is often not easily made. Many patients start to feel desperate and left alone by their doctor. If IC is diagnosed, most feel relieved.
Interstitial Cystitis is largely unknown to doctors and specialists, while even some urologists are ill equipped to deal with it, so it may take a while before IC is diagnosed.
The usual urine tests and cultures will not show anything abnormal in IC, although a small amount of red blood cells, i.e. blood, may be found.
If IC is suspected, the urologist will plan more extensive tests to be able to confirm that assumption.
The urologist may decide to perform a cystoscopy to look into the bladder, but this examination usually reveals no abnormalities. When the cystoscopy is done under general anaesthesia, so that the bladder can be filled to the limit, then focal bleeding spots (pinpoint hemorrhages), due to stretching of the bladder wall, may be observed as a sign of IC.
At the same time, a small piece of tissue may be sampled, a biopsy, so that a pathologist may support the diagnosis. Under the microscope, an intense chronic inflammation of the connective tissue just below the mucosal surface may be observed in cases of IC. In the initial stages of IC, only very little scar tissue may be found, but the amount will rise later on. The pathological findings indicate a strong suspicion that the disease may be auto-immune in origin. It seems plausible that elsewhere in the body a similar auto-immune disorder may cause other health problems.
The exact cause of IC remains unknown. The therapy must therefore be targeted at the bladder to make the symptoms bearable and try to keep it that way.
- Diets, avoiding specific foods may ease symptoms, but general guidelines cannot be given; many patients found that acidic, alcoholic or carbonated beverages, as well as coffee and tea may increase pain, but diet measures are often very individual.
- Rinsing of the bladder, using different types of medication has a varying effect and needs to be repeated often. Medication used:
- DMSO (DiMethylSulfOxide)
- Painkilling medication may have a soothing effect, especially the non-steroid anti-inflammatory drugs or NSAID's.
- Tricyclic anti-depressant medication probably acts to help patients to be more indifferent to the pain, thus rendering it less bothersome.
- Cannabis has been used to ease the symptoms of IC. Cannabis (marihuana, pot) has recently been approved for medical use by the Dutch Ministry of Health and is now available in standard dosages. For more information visit www.cannabisbureau.nl (in Dutch).
- Stretching the bladder to the limit (bladder hydrodilatation) under general or spinal anaesthesia may also have a (temporary) effect.
- Pentosan polysulfate sodium (Elmiron®) may be used orally or as bladder instillation and seems to 'coat' the bladder wall
- It is becoming clear that IC is not a disease on is 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 shown to help against IC.
- In the long term, IC may lead to a gradually decreasing bladder volume due to scar tissue formation. The symptoms may then grow worse, especially urgency and pain. The end result may be an extensively scarred and small bladder, which may necessitate surgical removal.
|The following text is based on information from the Interstitial Cystitis Association|
The Bladder Retraining Program is a self-help process by which patients suffering from conditions that produce urinary urgency and/or frequency can learn to control their urge to urinate in an attempt to improve their symptoms.
Why Retrain the Bladder?
The theory behind the program is that whenever a patient experiences pain or
urgency in the bladder, the normal impulse is to urinate in order to stop the symptom. This establishes a pattern of frequent voiding, which, once begun, can be difficult to reverse. The bladder is a muscle, and that muscle wall becomes weakened in the course of frequent urinating. The goal of the Bladder Retraining Program is to use a series of simple steps to achieve longer and longer periods between urinations. Rehabilitation of the weakened bladder muscle is the objective, with increased urinary capacity and reduction of discomfort the expected result.
How Does the Process Work?
Working with a urologist, a protocol is established for each patient beginning with a four-week period of holding the urine for a minimum of a certain number of minutes or hours (based on the individual's current average voiding schedule). The patient is encouraged to wait a specified period after the first urge is felt before urinating (15 minutes, for example). If severe pain is felt before the period has elapsed, voiding is encouraged. If after waiting, the patient finds that the need to urinate has diminished, then she/he should wait until the next urge to void is felt. At the end of one month, the time interval is increased, and at the end of the second month, the interval is increased again. The goal is to have the patient meet the required interval most of the time. It is acceptable if intervals are occasionally longer or shorter, as long as the minimum interval occurs most of the time.
Who Can Benefit?
In mild IC cases where urinary urgency is the only symptom, improvement may be evident within several weeks. With more severe symptoms, the retraining process may take longer. Paul Koprowski, MSW, an expert in bladder retraining, recommends that in patients whose symptoms are varied and in whom pain is the major feature of the diagnosis, the pain must first be addressed before bladder retraining can be effective.
In a 1989 study of 21 IC patients by Dr. Parsons, 86% of patients with no pain or mild-to-moderate pain reported improvement, while 43% of patients with moderate or greater pain improved. Success was defined as a patient reporting a greater than 25% improvement in their overall feelings.
What Else Can Be Done?
Many IC patients -- probably due to confusion between IC and cystitis -- have been instructed to drink large quantities of liquids and urinate often. In fact, it is important for IC patients to drink a moderate amount of liquid, with the optimum volume being about two quarts in a 24-hour period.
While caffeine and acidic foods are often mentioned on lists of foods for IC patients to avoid, in addition, salt (sodium) and salt substitute (potassium) -- widely used in processed and frozen convenience foods -- can be serious bladder irritants. Putting salt on an exposed muscle causes it to contract: the bladder seems to react to sodium and potassium similarly.
Simply instructing the patient to hold the urine will inevitably fail due to a lack of understanding as well as skepticism. The relatively long time period (average 3 months) required for success also contributes to patient dissatisfaction and noncompliance. The protocol does prove successful when special attention is paid to the patient, including the employment of a medical social worker to encourage the patient's belief in the method, as well as an understanding that this is not an "instant cure." In the absence of a medical social worker, the urologist should provide formal written instructions to explain the protocol, and should arrange for regular follow-up visits to monitor and encourage the patient's progress.
The Interstitial Cystitis Survival Guide, written by Robert M. Moldwin, MD,
and published by New Harbinger Publications, Inc, is a comprehensive book on IC. It gets the
uninitiated well under way to understand what is happening 'down there',
while at the same time offering the (self-)educated patient a reference on
Chapters on diagnosis, possible causes, symptoms and treatment options
guide you through the current knowledge on IC.
Trying to feed medical data to information-hungry laymen can be a
hazardous undertaking both for patient and doctor. The doctor may get
frustrated because the patient will try to present medical data as if it is a
mathematical truth, while the patient may be tempted to think that he/she
knows more than the doctor does. The 'Survival Guide' does try to give
balanced information, so the patient gets an idea why, for instance, a
specific therapy is started. On the other hand, the vast amount of information
on treatments in the book may give the impression that there is a free choice
as far as therapies is concerned.
Maybe as a reaction to the past emphasis of psychological factors as a
cause for IC, these have been largely swept under the carpet in this book,
although there is definitively a link between psychological stress and
symptoms, while IC itself may as such also cause psychological problems.
Sometimes, the author is too eager to draw laymen's conclusions, like
others did before him in the case of IC and fibromyalgia. Since both cause
pain and seem to be related in some way to the immune system, together
with some other similarities, this may lead one to believe that both are
connected. Besides the fact that this does not help you any further, since
fibromyalgia is not understood any better than IC, it is nothing more than
speculation on the part of doctors and laymen who are looking for a needle in
a haystack and just pick up any straw because it vaguely resembles a
As long as you use this book as a reference to understand what the doctor
is talking about and remember that medicine seldomly equals mathematics,
then it is highly recommended. In all, it is a well-written and rarely boring
account of the current knowledge of Interstitial Cystitis.
New Harbinger Publications, Inc.
5674 Shattuck Avenue
Oakland, CA 94609
Information and Links
It is important to know that some urologists have a special interest in Interstitial Cystitis. Some specialists in the field of auto-immune disorders are closely working together with urologists. In some countries, like in The Netherlands, patients have joined hands to share experiences and provide support.
The Dutch IC Patient Group was set up in 1997. The activities of this foundation cover a wide spectrum of bladder disorders - including IC/chronic bladder pain syndrome, enuresis and prostate problems - and both urinary and fecal incontinence.
The launch of our support group followed several years of campaigning through the media to draw the attention of patients, family doctors and specialists to the existence and treatment of IC and also to the possible link with autoimmune diseases. There is an ongoing study at Rotterdam University Hospital into the possible relationship between IC and Sjögren's Syndrome. An inter-university research programme into IC is currently at the planning stage.
In November 1997 we held our first IC patients' symposium and a second is planned for November 1998.
The Foundation already had an existing network of telephone contact persons: patients counselling patients. This was expanded to include IC patients and plays a valuable role in providing IC patients with the necessary support.
Right from the start we were aware that we needed to launch our own IC newsletter. Little information on IC was available in the Dutch language at patient level and IC is rarely if ever listed in home medical encyclopaedias. The first issue of 'Aquarius' was published in March 1998 and it is planned to make this a quarterly publication. Our active IC medical advisory board has been very supportive in this project, providing us with articles on different aspects of IC.
We keep in close contact with the ICSG in the UK and ICA Deutschland, exchanging information and ideas and keeping each other up-to-date with the latest developments at all levels.
IC Patient Group - NL
3980 CA Bunnik
More on this subject is available on the Internet:
http://www.icpatienten.nl(Dutch Interstitiële Cystitis Patiëntenvereniging)
International Painful Bladder Foundation
Interstitial Cystitis: 'Patient Driven IC Site'
Interstitial cystitis: National Institute of Health (US)
Interstitial Cystitis Association
Interstitial Cystitis Network