Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS) is a poorly understood chronic pain condition. For many years it was thought to be an inflammatory condition of the bladder wall, but new research over the past 10 years indicates that this isn’t necessarily so.
For many reasons, including that urologic tests often produced negative results and the vast majority of people with IC/PBS are women, patients in the past were too often told that they had an oversensitive bladder or that the symptoms were “all in their heads.” This is not true.
The most common symptom of IC/BPS is discomfort and pressure in the bladder, urethra, and pelvic area. People with IC/BPS generally experience urinary frequency (needing to go often) and urinary urgency (feeling a strong need to go). Some people experience low back pain and inner thigh pain as well.
For some people, symptoms come and go, while for others they are constant. Symptoms vary from mild to severe. In more severe cases, the pain is often described as a “lit match” or “ground glass” in the bladder. Pain during any kind of sexual stimulation or vaginal penetration is common, and many women are unable to have intercourse because of the severity of the pain.
If you are experiencing symptoms, see a gynecologist, a urologist, or a urogynecologist. She or he should obtain a complete medical history, perform a thorough abdominal and pelvic exam, and do testing to exclude other conditions that can have similar symptoms, including bladder infections, kidney infections, kidney stones, pelvic floor problems, vaginal infections, endometriosis, and bladder cancer. For some women, IC/BPS may feel like an acute bladder infection. However, urine cultures are negative, and symptoms do not usually respond to antibiotic treatment.
In the past, a procedure called cystoscopy with hydrodistention, which involves placing a thin telescope-like camera into the bladder, usually under general or spinal anesthesia, was used to make the diagnosis. However, there has been controversy over this procedure for many years, because some patients with severe symptoms have only mild findings on cystoscopy (pinpoint hemorrhages or “glomerulations”) and biopsy, and conversely, some patients with mild symptoms have very severe findings on cystoscopy and biopsy. Because of this, diagnosis is usually based on symptoms, and many urologists and urogynecologists forgo cystoscopy unless there is a concern for another cause of the symptoms, like a foreign body in the bladder or bladder cancer.
IC/BPS used to sometimes be diagnosed by using the potassium sensitivity test. This involved placing an acidic substance into the bladder and ascertaining the level of bladder discomfort. This test is now considering outdated and should not be performed in routine clinical use.
IC/BPS was frequently misdiagnosed in the past as urethral syndrome, trigonitis, or recurrent bacterial urinary tract infections. Now all those diagnoses except recurrent urinary tract infections fall under the diagnosis of IC/BPS, and treatments are similar.
COMMON CONDITIONS ASSOCIATED WITH IC/BPS
IC/BPS may be associated with other conditions, including irritable bowel syndrome (IBS), vulvodynia, lupus, endometriosis, and migraine headaches. More research is needed to better understand the overlap between these conditions.
HOW MANY PEOPLE HAVE IC/BPS IN THE UNITED STATES?
IC/BPS is more common in women than men, affecting between 3.7 – 7.9 million women in the United States. The average age of onset is 40 years old. Twenty-five percent of patients are under the age of 30, and this includes teenagers, and even children. Many people who experience the symptoms of IC/BPS are undiagnosed or misdiagnosed.
MEDICAL TREATMENTS FOR IC/BPS
There is no single treatment that helps all people with IC/BPS. Instead, you may have to try several different treatments to find the one or ones that are most helpful for you. Work closely with a doctor familiar with these treatment options. IC/BPS is a chronic disease that requires ongoing lifelong management. Additional research needs to be done to better determine which patients respond best to particular treatments and to find new treatments for those who aren’t helped by current treatments.
Treatments that may be helpful include:
- Medications, including antispasmodics, antihistamines, and pentosan polysulfate sodium (Elmiron), are most commonly used to treat IC/PBS. Elmiron is the only FDA-approved oral treatment for IC/BPS. Medications including gabapentin (Neurontin) and amitriptyline (Elavil) can also reduce the nerve-related pain associated with IC/BPS.
- Diet modifications. Many people with IC/BPS have sensitivities to specific foods. Caffeine, chocolate, alcohol, artificial sweeteners, spicy foods, citrus fruits, cranberries, and tomatoes are common offenders. Others with IC/BPS may have sensitivities to other foods. Removing these foods brings relief for some people. You can use what’s called an elimination diet, where you stop all foods in these categories for a few days, and then slowly add them back one by one, to determine which can be tolerated and which cause symptoms.
- Physical therapy by a physical therapist experienced with pelvic floor rehabilitation may help reduce the pain associated with IC/BPS. Physical therapy also helps treat pelvic floor muscle spasms, which many people with IC/BPS also experience. The American Physical Therapy Association maintains a list of physical therapists who have received specialized training in pelvic pain.
- For patients with severe, intractable pain, narcotics can be very helpful during an exacerbation (also called a flare). Because of the risk of addiction and physician concerns about prescribing, other treatments are often recommended for chronic use and control of symptoms. While less risky treatments should always be tried first, narcotics should be considered for immediate relief when pain is severe and unrelenting.
INSTILLATIONS INTO THE BLADDER
- A variety of medications can be inserted directly into the bladder via a small urinary catheter to provide pain relief. These medications include local anesthetics such Marcaine or Lidocaine, cortisone, heparin, gentamicin, bicarbonate, and sometimes DMSO (dimethyl sulfoxide — an anti-inflammatory medication that is used less frequently today than in the past). Because there is not one combination that helps all people, the medications must be used in varying combinations and doses. These treatments are usually given at a doctor’s office.
- Oxychlorosene sodium (Clorpactin) should not be placed into the bladder. It is an outdated treatment that is extremely painful and has not been shown to be successful in reducing pain.
- Botox injections into the bladder have recently been used to treat urinary frequency and urgency. However, no long-term studies have been conducted testing for efficacy or side effects in IC/BPS.
- Bladder distention (hydrodistention), performed under general anesthesia, involves overfilling the bladder with water, which stretches the bladder wall. Although it is no longer considered as a first line of treatment, some patients who have this procedure done regularly experience symptom relief. Doing so, however, exposes people to the risks of frequent general anesthesia.
- Some people have surgery that involves partially or nearly completely removing the bladder. This is considered a treatment of last resort and is limited to those patients who have a smaller than normal bladder capacity and pain limited to the bladder. It is generally not a treatment of choice because IC/BPS often recurs on the intestinal “bladder” tissue.
SURGERIES THAT ARE NO LONGER STANDARD OF CARE
- Cystolysis or Bladder Denervation, where certain nerves to the bladder are cut, in an attempt to reduce the pain
- Stretching of the urethra (urethral dilation)
Although the cause(s) and cure(s) for IC/BPS have not yet been found, researchers are working to better understand and treat this enigmatic condition. The MAPP study, conducted by the U.S. National Institutes of Health (NIH), is examining the overlap of symptoms between different chronic pain conditions and attempting to determine which subset of patients respond best to specific treatments. Other new research is examining whether various inflammatory mediators found in the urine could be responsible for the symptoms of IC/BPS. This may lead to a more accurate diagnosis and a variety of new treatments.
For more information, visit the Interstitial Cystitis Association at www.ichelp.org.