If you've ever had a bladder infection (also known as cystitis), then you have a tiny inkling of what it feels like to have interstitial cystitis (IC). You have the same strong, uncomfortable need to urinate frequently and pain when you do, but with IC there are no bacteria to hang the blame on. Consequently, antibiotics, which kill bacteria and knock out a bladder infection, have no effect at all on IC, so the symptoms persist.
Doctors estimate that 700,000 people in the United States have IC — 90 percent of them women. "Some believe that number is too low and that IC is still significantly underdiagnosed," says Michael O'Leary, M.D., associate professor of surgery at Harvard Medical School.
Although there's no cure for IC and nobody knows for sure what causes it, the picture isn't as bleak as it once was. IC has garnered a great deal of research interest (and the money to pay for it), and there are more useful treatments than ever to help you tame the symptoms and get on with your life. It's an encouraging start.
|Pinpointing Interstitial Cystitis
IC is considered one of the chronic pelvic pain disorders, since that's where many of the symptoms congregate. However, symptoms vary from person to person and even within the same person. Typically, if you have IC you may experience mild discomfort, pressure, tenderness or even intense pain in your bladder or the surrounding areas. You may feel the need to urinate 10 times a day or up to 50 or more times a day. Pain may change in intensity as your bladder fills with urine or as you empty it. Menstruation, diet and sexual intercourse may exacerbate your symptoms. "Most women recognize these symptoms in themselves, especially after they've heard other women talk about them," Dr. O'Leary says. "I hear people call it 'the painful bladder syndrome' and that's exactly what it is."
In fact, the symptoms described by women are key to diagnosing the condition. But because there's no definitive test to nail down IC, your doctor must rule out other conditions first — especially those with similar symptoms, such as bladder infection, bladder cancer, sexually transmitted diseases, kidney disease and vaginal infections.
Your doctor also may want to perform a cystoscopic examination to look inside your bladder for abnormalities. This procedure is done using a special instrument called a cystoscope, a narrow hollow tube fitted with lenses and a light. Since the exam can be painful, it's done under local or general anesthesia.
With IC, your doctor is looking for petechial (pinpoint) hemorrhages, also known as glomerulations. About 90 percent of people with IC have glomerulations on the walls of their bladders. "If they're not present, however, it doesn't necessarily mean you don't have IC," Dr. O'Leary says. "In fact, many doctors don't even do a cystoscopic examination to make a diagnosis. If you pay careful attention to what your patient is telling you, and you've been able to rule out other diseases with a properly done urinalysis and culture for bacteria, you can make a diagnosis without a cystoscopic exam."
Now it gets more complicated. "IC is so variable that it's very difficult to point to any one particular therapeutic alternative as best," Dr. O'Leary says. "That means it's worth trying a lot of options, because there's usually something that will work for someone. The good news is that many patients with IC have symptoms that just spontaneously resolve for reasons that we don't understand." For those who continue to be plagued with IC symptoms, here's what's currently recommended:
- Elmiron — Also known by the generic name pentosan polysulfate sodium, this is the drug that most women start with. The U.S. Food and Drug Administration approved Elmiron in 1996 as the first drug specifically for IC. In clinical trials Elmiron improved symptoms in 38 percent of people treated. If you take this drug you may not feel any relief from IC pain for the first two to four months. Doctors urge you to stay with it for at least six months to see if it helps.
- Aspirin and ibuprofen — These over-the-counter pain relievers can be helpful if your symptoms are mild.
- Antidepressants such as amitriptyline and imipramine — Sold under the brand names, Elavil and Tofranil-PM, respectively, these can help reduce pain and also help you deal with the psychological stress associated with chronic pain.
- Antispasmodics and muscle relaxants — These can help relax the bladder muscle.
- Dimethyl sulfoxide (DMSO) — This medication is put directly into the bladder and is thought to work by reducing inflammation and blocking pain. DMSO also can be mixed with steroids, heparin and/or local anesthetics to help reduce pain.
- Bladder distension — In this procedure, your bladder is filled with water under general anesthesia. The water is held in the bladder for 10 to 15 minutes before being emptied. It may increase bladder capacity and interfere with pain signals transmitted by nerves in the bladder.
|Helping Yourself Feel Better
Along with the treatments your doctor offers, you can take steps to help control your symptoms. The more active you are in your own disease management, the better you're likely to feel. Dr. O'Leary and the Interstitial Cystitis Association suggest you give some or all of these self-help tips a try.
- Pay attention to your diet. Many patients and doctors have noticed that certain foods can contribute to bladder irritation and inflammation. They include alcohol, tomatoes, spices, chocolate, caffeinated and citrus beverages and high-acid foods. You can try eliminating them to see if there's any reduction in your symptoms. You also may want to restrict aged cheeses, yogurt, onions, MSG, aspartame (Nutrasweet), most nuts and cured or smoked foods.
- Keep a bladder diary. Record urination times, symptoms, response to foods, exercise, etc. That way you can keep track of what helps your symptoms, what has no effect and what makes them worse.
- Eat several small meals a day instead of larger ones.
- Try exercises such as low-impact aerobics, walking, yoga and tai chi. If your symptoms are mild you may want to try swimming, jogging, weight training and bicycling.
- Reduce stress by learning basic relaxation techniques, using meditation and self-hypnosis and getting massages. Biofeedback also has been helpful for some people with IC.
- Try using a heating pad or a cold pack on your bottom. You'll have to experiment to see which feels better.
- Take a warm sitz bath.
- Wear loose-fitting clothing such as baggy pants or skirts.
- Wear cotton underwear.
- Avoid belts and other articles of clothing that put pressure on your waist and below.
There's no cure for IC, but it's not a progressive disease, either — it doesn't continue to get worse as time goes by. In fact, most people get their symptoms under control and live comfortably. "At least now there's a much greater awareness of the disease and much more research being done today than even 10 years ago," Dr. O'Leary says. "So I think — I hope — we'll have a better understanding of what the condition is, and when we understand it better, I believe we'll be better able to treat it and ultimately prevent it."
|Do You Have Interstitial Cystitis?
The following checklist may help determine whether you have interstitial cystitis:
- Do you have an urgent need to urinate day and night?
- Do you urinate frequently?
- Do you have pain when you empty your bladder?
- Does the pain change in intensity as your bladder fills with urine?
- Do you have pain and pressure in your lower abdomen?
- Do urine cultures fail to turn up any signs of bacteria?
- Do your symptoms get worse during menstruation?
- Do you have pain during intercourse?
- Do your symptoms get worse when you smoke?
- Do some foods make your symptoms worse?
- Do your symptoms wax and wane?
If you have any of these symptoms, see your doctor.