What is Interstitial Cystitis?
Interstitial cystitis is a system complex (the medical term for lumping many different symptoms together in a disease complex). The most important symptoms tend to be urgency of urination as well as frequent urination (this is the repetitive emptying of small amounts of urine in the bladder). People suffering from interstitial cystitis may also experience pain, particularly as the bladder fills, or particularly as the bladder empties at the conclusion of a void (urination).
Many of the symptoms would appear to the patient as a bout of cystitis (bladder infection). It is difficult for the patient to determine the difference between a true bacterial infection and a bout of interstitial cystitis. Interstitial cystitis is usually suspected by the referring physician after the patient has presented on several occasions with what appears to be cystitis but no bacterial growth in the urine.
What is the natural history?
The natural history of the disease is to progress very slowly and usually the first symptom is just urgency and the patient may ignore them. Many patients feel they are normal despite being told that they have urgency and frequency. This is because the brain becomes accustomed to the manner in which the bladder fills and empties, and this becomes “normal” for the individual. When compared to the larger population, however, this individual may be viewed by the urologist as being abnormal. As the disease progresses it may continue until the urgency is present all of the time and then, in addition, have the associated pain. Other patients may present with periods of absolute normality followed by periods of what we term “flares.” It is usually during these flares that an incorrect diagnostic of bladder infection is made. It is acceptable standard for the patient to call the primary care physician or gynecologist and complain of a urinary tract infection and be given a course of antibiotics.
Many patients go for years with feeling that their bladder is not behaving normally. This is usually noticed in times in which one compares oneself to say, classmates.
Bacterial cystitis (inflammation of the walls of the bladder) is caused by abnormal bacteria in the urine. The treatment for this is antibiotics. Many patients are incorrectly treated with repeated courses of antibiotics prescribed for the symptoms of urgency, frequency, and burning with micturition (urination). Because many patients actually present with intermittent flares, oftentimes as the flare resolves antibiotics may be prescribed, and the resolution of the flare would be incorrectly ascribed to the taking of antibiotics. It is interesting to bear in mind that interstitial cystitis does not respond to antibiotics.
Interstitial Cystitis Flares
Interstitial cystitis can flare up as a result of physical exercise, during a menstrual cycle, and psychological stress. Exercises such as a riding in a car, traveling in an airplane, and working out can cause a flare of interstitial cystitis symptomatology. Regular menses, without the regulation of birth control pills, may result in flares the week before the menses begins and the symptoms may diminish once the actual flow begins. This is related to the lower levels of estrogen. A patient on the pill may have this cycle of flares ironed out.
Interstitial cystitis may also flare during sexual intercourse, or shortly after this. Invariably this is the day following sexual activity. It must be borne in mind that exercise (working out regularly) and sexual activity do not cause the disease; they merely aggravate it or highlight it. It is important to remember that the main goal of therapy for patients with interstitial cystitis is to maintain a regular healthy exercise state and normal sexual life.
As the interstitial cystitis (IC) begins to improve – and will do so regularly – the periods between the flares will lengthen themselves, eventually ceasing altogether.
Allergies and Interstitial Cystitis
If the patient has pre-existing allergies it will be noted that any time these allergies flare there will be a corresponding flare of the interstitial cystitis. It is necessary to not only treat the existing allergies but to treat the interstitial cystitis and treat them both simultaneously. Allergies may be seasonal and thus, interstitial cystitis may be seasonal. In various areas of the United States there is a definite seasonal variation of interstitial cystitis. Antihistamine is to be used when prescribed regularly.
Stress and Interstitial Cystitis
Interstitial cystitis is not a psychosomatic disease. It is not caused by emotional stress or psychological problems. This is a disease of the wall of the bladder. However, psychological stress may result in an increase in the amount of symptoms. If the patient has ongoing tremendous psychological strain that requires psychotherapy, the psychotherapy must be applied for the psychological aspects only. Medication and other treatment will be applied to the bladder in an attempt to reduce the interstitial cystitis.
Progression of Interstitial Cystitis
The natural history of the disease is slowly progressive in most patients. It is never associated with cancer of the bladder or other diseases in this category. If untreated, the interstitial cystitis will result in a gradual shrinking of the capacity of the bladder and this will usually progress to the associated symptom of pain; thus, as the disease progresses, pain becomes a predominant feature. This may be ascribed as pelvic pain, lower abdominal pain, or fleeting pain. Invariably, this is associated with pain after intercourse or during sexual activity.
Frequent Voiding and Drinking Large Amounts of Water
Frequent voiding should be discouraged in interstitial cystitis patients. By giving in to the urgency you will begin to make your bladder functionally smaller. It is best to ignore the urge to void if this occurs every 10-15 minutes. Allow this to subside and attempt to go at least for two hours. This will ultimately prevent the bladder from becoming functionally smaller and will prevent muscle shortening in the muscles of the bladder. It is important not to drink large volumes of water as this may be detrimental to the bladder. Recommendation is to continue with normal volumes thus resulting in normal output of urine. Urinary output is anticipated between 1-1½ quarts per day.
What causes interstitial cystitis?
The actual mechanism by which interstitial cystitis develops in different patients is not well understood. We do know that it runs in families but there has not been a gene identified. Whatever the exact mechanism, Ultimately, patients with interstitial cystitis have a deficiency in the layer of mucus that protects the bladder wall from the saltiness of the urine. Thus, salt-bearing foods and higher salt loads to the kidneys will result in an increase of symptoms. The mucus is deficient in about 90% of patients who are thought to have interstitial cystitis.
Often interstitial cystitis is associated with other well known allergies, and controlling these allergies can resolve the symptoms associated with interstitial cystitis. 90% of patients have a deficiency in the mucus lining of the bladder, and in 10% of patients with interstitial cystitis, there may be a de facto neurogenic inflammation. This neurogenic inflammation may be associated with other visceral type pains, or visceral neural dysfunction such as irritable bowel syndrome, chronic pelvic pain, a sensation of being bloated or even vulvo-vestibular pain.
Diet and Interstitial Cystitis
You will have been given a so-called “diet sheet” which lists a number of day-to-day foods commonly ingested that are said to be associated with interstitial cystitis. We do not recommend any specific diet. The overriding principle is to maintain a low-salt diet, particularly potassium (bear in mind that potassium salt is often used as a salt substitute). Another group of foods to be aware of are foods that contain vinegar. Pickled foods contain acetic acid, which can be irritating to the bladder wall.
Most patients feel that citrus fruits, tomatoes, or pineapples may aggravate the bladder. Some patients have also indicated other foods such as chocolate and coffee. Not every patient will have a response to any particular food type. It is recommended that every patient try alternatives.
Most patients will report that spicy foods containing things such as jalapeno peppers will increase the amount of symptoms experienced.
It is always important to bear in mind that diet per se does not cause the disease; it only results in the flares of the disease.
Many patients report Prelief® as being protective. One may often find, after establishing a diet regimen at home, that eating at a new restaurant may result in a flare. When there is any doubt in your mind Prelief been said to be effective and this is an entirely safe medication (see section on medications).
Changing Symptoms in Interstitial Cystitis
The natural history of the disease is for patients to report “good days and bad days.” The bad days may be associated with menstrual cycle and actual bleeding, recent history of sexual activity, a flare of allergies, or tremendous stress.
If menstrual changes are frequent and severe we will modulate and control the level of estrogen with hormone administration. Discuss this with us if it is applicable to you. If you have other allergies and they are related to bladder symptoms take your usual anti-allergy medications – this usually will be helpful in controlling the flare .
Potassium Provocation Test
The potassium provocation test is designed to challenge the nerves carrying pain signals to the brain. Pain signals in these nerves are translated in sensation by potassium ions. Hence, potassium is placed into a solution and compared with a solution of water in the patient. The patient is not told which solution is instilled into the bladder first. Most patients will not perceive any difference between the two solutions, however, 90% of patients with interstitial cystitis will be provoked by the potassium salt test.
Interstitial Cystitis Therapy with Medications
Interstitial cystitis therapy depends on the type of interstitial cystitis one has; either deficiency of the mucus lining of the bladder wall, or an inflammation of the nerves going to the bladder, or in some patients a combination of both. . Heparin and Elmiron are very effective ways of treating the mucus deficiencies.
Heparin & Elmiron:
Heparin and Elmiron may completely reverse the course of the disease and resistance will not develop to these two agents. Invariably, the length of therapy is somewhere between 3-6 months and in some patients this may be extended to 1-2 years, and in other patients they may have to continue on the therapy. DMSO and bladder dilatation will both stimulate mucus production, but neither of these two interventions are curative and are usually reserved for particular patients.
Antihistamines are frequently used in patients with interstitial cystitis and these days we have a large array available to us. Vistaril remains the gold standard on which other medications are judged.
Antidepressants are effective medications and will decrease the amount of spasm and pain experienced by the patient. They are added to the medication list in an attempt to aid sleep. Invariably, when starting a patient on an antidepressant regimen we use a tiny dose nowhere near the amounts recommended for depression. The patient will experience some feelings of fatigue despite the fact that they are on a very low dose of these medications. We encourage one to work through this for a period of at least four weeks at which time the effects of the antidepressant will be appreciated.
Progression of the Disease With Medication and Treatment
Significant interstitial cystitis symptoms will take time to resolve. Most patients will see some improvement in the initial 3-6 months of therapy and up to one year for entire resolution. A small group of patients will resolve quickly. The first sign of improvement is usually a resolution of the pain and then a resolution of the urgency. The last symptom to disappear entirely is usually frequency.
Functional Electrical Stimulation to the Pelvic Floor
Functional electrical stimulation therapy to the pelvic floor is usually advised as an adjuvant in patients who have insubstantial amount or quality of the mucous lining of the bladder. This will aid in the concomitant muscle spasm. Muscle spasm is associated with any pain signal and the urgency, frequency, and pain are conducted through nerves that usually carry pain signals. This results in a surrounding muscle spasm, which is a normal protective mechanism of the body (for instance think of a sprained ankle and the muscle spasm that occurs on either side of the joint). Functional electrical stimulation to the pelvic floor will be modulated for each individual patient according to the findings at pelvic examination and the symptom complex.
The Interstitial Cystitis Association Website: www.ichelp.org
“The Interstitial Cystitis Survival Guide” by Robert M. Moldwin, MD, FACS:
Published by New Harbinger Publications, INC
“The Better Bladder Book” by Wendy Cohan, Published by Hunter House Inc. 2011