Interstitial Cystitis
C. Lowell Parsons, M.D.
So, you have been diagnosed with interstitial cystitis (IC) and a number of questions have come to your mind such as: What is it? What causes it? What can I do for it?
Symptoms
Interstitial cystitis is mainly a disease that is a symptom complex or may be better understood as having the urge to urinate frequently (even though there is little or no urine in your bladder). A person with IC begins to feel a discomfort associated with this urge and maybe even pain as the bladder fills. The disease tends to progress very slowly and usually the first symptom is just urgency. It is frequently diagnosed as recurrent bladder infection since the symptoms are the same. For some people the disease will slowly progress until the urgency is present all the time and associated with pain. For others, the disease will be present but not severe enough to cause any problems, only intermittent flares. It is during these flares that the incorrect diagnosis of bladder infection is made.
IC is a complex of symptoms not associated with true bacterial infection of the bladder but has all the same symptoms. There is also much confusion as to what an individual may have for perhaps several years before the symptoms of urinary urgency and frequency are constantly present and the culture shows no true infection. This is why many people take longer to be diagnosed than others because of the confusion between the two diseases. Bacterial cystitis of the bladder is treated promptly and effectively with antibiotics. On the other hand, interstitial cystitis will not respond to antibiotics. When these medications are taken during a short flare of IC, the improvement after several days may be wrongly ascribed to antibiotics.
Interstitial Cystitis Flares
Interstitial cystitis has a tendency to flare under any type of physical stress such as exercise, riding in a car, traveling in an airplane and viral infections. If you have a regular menstrual cycle and are not taking birth control pills, it will tend to flare the week before your menses and will diminish once the actual flow begins. It will also flare during sexual intercourse or shortly after. Exercise, sexual intercourse, or any other stress factors do not cause the disease, they merely aggravate it. These factors do not promote the development or progression of the disease and it is our recommendation to not give up any aspects of your life that are important to you since it will not actually affect the disease. If your IC improves (with therapy or by itself) these flare periods will decrease.
Allergies and Interstitial Cystitis
If you have any type of allergic problem such as hay fever, sinus problems, congestion, allergies to food, dogs, cats, etc., when your allergies flare, your IC will also flare. In fact, it is necessary to treat the allergies and control them as well as treat the IC directly. Most commonly people’s allergies will flare in the spring and the fall. In places like Southern California, the flare associated with the allergy season begins near the middle of January and extends well into May and then reappears in the fall when the Santa Ana winds stir up all the pollen. For control of allergies Atarax is the best antihistamine to use. See Therapy section for details on this drug.
Stress and Interstitial Cystitis
Interstitial Cystitis is not a psychosomatic disease and is not caused by emotional stress or psychological problems. But, if there is emotional stress present, it will flare the disease. It is important to realize that the symptoms are not in your head. You have a problem with your bladder. Psychotherapy may improve some emotional problems that you have, but you will still void 17 times per day. You must direct medical therapy at your bladder if you wish to have control of your symptoms.
Progression of Interstitial Cystitis
Interstitial cystitis has a tendency to slowly progress in some patients. It is never associated with cancer of the bladder or any other disease in this category. What occurs with IC is a gradual shrinking of the bladder and usually progression of pain.
Frequent Voiding and Drinking Water
Frequent voiding should be discouraged with IC patients. By giving in to the urgency, you will actually start to make your bladder smaller. It is best to ignore the urge, if you have to void for at least 10-15 minutes to see if it will subside spontaneously. This will prevent your bladder from becoming very small and its muscle functioning poorly. It is important to not drink large volumes of water as this may also be detrimental to your bladder. We recommend that you drink only normal volumes and have a normal output of urine, approximately 1-1.5 quarts per day.
The Cause of Interstitial Cystitis
Most people with IC have a mucus lining in their bladder and this mucus protects the bladder from all substances that are present in the urine that your kidneys clear from your blood stream. In particular, the salt that you ingest whenever you eat (all food has salt) is excreted by your kidneys into the urine and this salt alone will provoke your symptoms if the mucus lining in your bladder is not protecting it. The mucus problem is most likely the immediate cause of IC in well over 90% of patients. We don’t know why the mucus is bad, but this is currently being investigated.
People who have severe allergies may have their allergies as the primary reason that their mucus is defective and controlling the allergies may be sufficient to resolve the problem. In another group of patients where there appears to be no mucus problem (less than 10%), there may be a type of neurogenic inflammation (inflammation of pain and urgency nerves), cause unknown.
Diet and Interstitial Cystitis
We do not recommend any specific dietary principles to follow other than to maintain a low salt diet. In particular avoid the salt potassium which is used as a salt substitute. In general, most patients say that citrus fruits- tomatoes, pineapple and chocolate—aggravate their bladder. All of these foods are high in the salt potassium. It is not the acid but the potassium that seems to provoke the bladder. Also the spicy foods such as those containing jalapeno peppers are provocative. Diet per se does not cause the disease, only flares it. If you eat a salty meal, such as one containing teriyaki or soy sauce (high in potassium), you may see a marked increase in your symptoms temporarily. Even the most optimum diet will not cure IC, just minimize the flares and the provocation associated with it.
In general, we do not recommend anything other than what is noted above and naturally to avoid any substances that may bother you.
Changing Symptoms in Interstitial Cystitis
It is natural for IC to be associated with good days and bad days. As noted above, things that will be associated with bad days are the period just before the menstrual cycle, during or after sexual intercourse, or perhaps even allergies. Many times it will flare for unknown reasons and then spontaneously subside. Even after it subsides, if you were to measure the amount of urine you void each time, it would be substantially less than normal people. People with IC void on the average about 1-3 ounces while normal people void 10-14 ounces. Measuring the volume of urine each time you void for 3 days is a good way to see how normal or abnormal you are.
Potassium Test
The potassium test is when we challenge the bladder with a solution of plain water and a solution of salt water. Normal people cannot tell the difference between the two solutions since their mucus prevents any diffusion of salt into the bladder wall. On the other hand, approximately 90% of IC patients will be provoked by the salt. This is a very useful test to decide what type of IC you have and help direct therapy. If you have bad mucus, we recommend as noted above, using drugs like Heparin, Elmiron, DMSO and bladder dilation.
Therapy
Interstitial cystitis therapy depends on the type of problem you have. For those who have a mucus problem, drugs such as Heparin and Elmiron have been the most effective we found in recent years. These medications may completely reverse the course of the disease and resistance to their use does not develop. It is to be emphasized that patients should take the medications for 3 to 6 months to work and the medication works better after 1-2 years. It will probably be the optimum treatment for people who have bad mucus which can be determined by doing the potassium test. DMSO and bladder dilation both stimulate mucus production and, while initially may cause a marked increase in symptoms, after several weeks the mucus regenerates and people can experience substantial remission. In general, they are not permanent and there is a tendency for the disease to reoccur. This is different than when using drugs such as Heparin or Elmiron, because if you respond to those medications, the disease tends to improve and not become resistant to this type of treatment.
For the allergic individual we strongly recommend the use of hydroxyzine (Atarax or Vistaril) approximately 50-75 mg at bed time. Used regularly, this medication suppresses allergies, markedly reduces the flares associated with it, and improves symptoms. The medications will make you tired the first few weeks and even slightly depressed. We recommend staying on it because after 4-6 weeks all these symptoms will resolve and the beneficial effects are noted. Even if you have good control with another therapy such as Heparin or Elmiron, you will still need the Atarax for the allergy season or you will flare.
Antidepressants
Antidepressant medications have significant effects on bladder spasms and pain. We use them primarily to aid in sleep and reduce symptoms. The primary antidepressant that we recommend using for the bladder is amitriptyline (Elavil) at doses of 25-50 mg at bed time. These are very low doses and are not the usual amounts required for treating depression but most people do not require much more medication than this. Even at these low levels, this medication will also make you tired and feeling out of sorts for 2-4 weeks. Again, all these side effects disappear in approximately one month and the beneficial effects are seen. We strongly encourage people to work through the tiring effects and even reduce the dosage to pediatric levels of 10 mg until the 3 or 4 week period has occurred. For those individuals with normal mucus, this may be the most beneficial therapy.
If for some reason amitriptyline cannot be tolerated, we recommend drugs like Prozac or Zoloft as alternatives. These medications, unlike Elavil, will not make you tired but are probably not quite as effective as Elavil.
Progress
If you have significant symptoms of IC, therapy will take time. The longer you are under treatment, particularly with Elmiron and Heparin, the better you will become. It takes 3 to 6 months for initial improvement and up to 1 year for good responses. Patients are even better after 2 years. It is important to be patient and continue treatment. The first sign of improvement is reduction in pain-frequency takes longer.
Prognosis
If you respond to therapy (80%-90% chance), then your prognosis is good. Your symptoms will actually reverse as time goes by and not progress.
