Having to Go: Understanding Interstitial Cystitis

By Christine Haran
Originally appeared at ABCnews.com

If you're going to the bathroom 18 times a day, chances are you've got less time than you'd like for more productive activities. Many women and men with interstitial cystitis (IC) not only feel the urge to urinate this often, they may also experience disabling pelvic pain that makes it difficult for them to lead as active a life as possible.

While this chronic pain disorder is still under-diagnosed, the National Institutes of Health estimates that about 700,000 Americans have IC. Many of these cases aren't being picked up because people assume the symptoms are due to other conditions such as endometriosis, or that the symptoms are psychosomatic. Below, Dr. David Kaufman, a urologist in private practice at Central Park Urology in New York City, talks about why people with IC symptoms should seek help for this uncomfortable condition.

What is interstitial cystitis (IC)?

It's a chronic disease of the bladder that is caused by deficiencies in the lining of the bladder, which allow irritants in the urine to leak through the coating of the bladder into the interstitium where all the nerves and nerve endings are located. These irritants in the urine irritate these nerve endings and basically initiate a cascade of events that is responsible for the symptoms that people with interstitial cystitis have. Part of this cascade is the release of substances that act on mast cells, which then release histamines. We believe that it is histamine that causes the bladder to sense frequency and urgency. The irritation also leads to the development of scar tissue in the bladder, which is less elastic than normal bladder tissue.

What causes these deficiencies in the lining?

We don't really know for sure. I believe that in a majority of people with interstitial cystitis the cause of the damage to the lining of the bladder is a chronic exposure to low grade urinary tract infection (UTI) for many years, at some time in the past.

What are the symptoms of IC?

Interstitial cystitis is like the worst urinary tract infection that you've ever had that never goes away. It's a triad of symptoms that includes urinary frequency, urgency and pain. Severe urinary frequency may mean going to the bathroom at least every hour. The sense of constant urgency is present even when you've already gone to the bathroom. And at least 90 percent of patients have some manifestation of pelvic pain. Different people have different interpretations of pain, so for some people, the pain is a deep pelvic pain. Others say it's a severe urgency that's very uncomfortable. And many women have pain with intercourse.

Interstitial cystitis is a devastating disease. It has a tremendous impact on quality of life, on social relationships, on people's ability to maintain their jobs. For the most part, people with IC are on disability because of their symptoms.

Is IC more common in women than men?

We used to think that, but there is an enormous population of young men who come to urologists' offices on a regular basis who have urinary frequency, urgency and pelvic pain. We urologists have been treating and diagnosing these men with chronic prostatitis, or prostate infections, for years. And yet when we do urine cultures on them and try to prove that there is an infection of the prostate gland, rarely are we ever able to prove that.

We are now realizing that we have been misdiagnosing many of those patients. I think that a tremendous percentage of these young men are just walking around with the same exact disease that women have, and they've been misdiagnosed by the urologic community with chronic prostatitis and treated with course after course of antibiotics and they never quite get better.

I think that just like women who have a history of having had urinary tract infections several years prior, the men that we're treating today with interstitial cystitis also had prostate infections several years ago.

Other than UTIs or prostate infections, what conditions is it often confused with?

A lot of female patients are misdiagnosed as having endometriosis because of their pelvic pain. But many patients have both IC and endometriosis. There have recently been some published studies that have found that the overlap between endometriosis and interstitial cystitis is really nothing short of astounding. About 70 percent of patients presenting to gynecology clinic with pelvic pain are found to not only have endometriosis but to have evidence of interstitial cystitis as well.

A lot of our patients with IC also have chronic fatigue. There's about a 15 percent overlap between IC and chronic fatigue and fibromyalgia and scleroderma and other collagen vascular type diseases, which are immune system disorders. The link with these conditions is not understood.

How is IC diagnosed?

The gold standard diagnosis for interstitial cystitis is to overfill the bladder in a procedure called a hydrodistention. This procedure is performed with a cystoscopy to look inside the bladder. When you overfill a normal bladder, the elastic tissue will stretch. You can extend a bladder to two, three or four times its normal capacity. At the end of the distention, when you empty it, it looks the same as it did before the distention. But distend an IC bladder, the scar tissue that has developed isn't as elastic as normal tissue. So the scar tissue, we believe, rips and tears, and when you empty the bladder after you've distended it for a few minutes, you see multiple points of hemorrhage and bleeding. And that's the test I've done up until recently on all of the patients.

Recently, there is a new method of diagnosis, which is not as well accepted but it certainly makes a lot of sense to me, and that's something called the potassium stimulation test. One of the substances that leaks through the defective lining of the bladder and irritates the nerve endings is potassium. In this test, potassium chloride is placed into a woman's bladder. A normal bladder won't respond to this potassium challenge yet an IC bladder will respond. The response is one of severe irritation and urgency and frequency and pelvic pain.

Instead of bringing a patient to the hospital and putting them to sleep and doing this whole stretching test, I can be fairly confident of a diagnosis of interstitial cystitis by doing this potassium stimulation test right in my office. I just put a dilute solution of potassium chloride in the bladder and see if it instigates a reaction. If it does, we have a solution of local anesthesia we can put into the bladder at the completion of the test so the patients are relatively comfortable when they walk out of the office.

What medications can be used to treat IC?

The first line of treatment is Elmiron (pentosan polysulfate), which is an extremely well-researched drug. Basically the results of most these studies show that by three months about 40 to 50 percent of patients on the drug will have a greater than 50 percent improvement in their symptoms. By six months, the number goes up to 60 to 70 percent of patients having a significant improvement in their symptoms. We think it works by repairing the lining of the bladder and preventing substances from leaking through.

Do patients also need pain relievers?

If pain is a big component of these patients' complaints, and it is for many, we'll treat with other medications. We don't use standard pain medicine per se because the pain that these patients suffer from is neuropathic pain. It's a pain that is caused by an activation of pain nerve fibers.

Typical drugs that we would use for neuropathic pain include an antidepressant, antiepileptic or antihistamine because histamines are one of the inflammatory mediators that are released by cells in the bladder wall that cause that feeling of urgency and frequency.

Do you treat pain and inflammation with a bladder instillation, in which the bladder is filled with a solution through a catheter and then emptied?

Until recently, bladder instillations were an "old fashioned" treatment for IC. We were using anti-inflammatory compounds like DMSO (dimethyl sulfoxide), along with steroids instilled into the bladder. Now, however, I am putting patients on a specific formulation of local anesthetic, an alkalinizing buffer and the drug heparin. I begin at the same time as the oral Elmiron prescription and instill this solution every other day for two weeks. The benefit is that most patients will feel significantly better after several treatments while we await Elmiron to kick in, which can take three to six months.

Do you recommend physical therapy?

Physical therapy can be crucial in a good percentage of patients with interstitial cystitis. And that brings us to a whole another concept, which, again, is not accepted by everybody. That is that, after a while, interstitial cystitis becomes more than just a disease of the bladder. Because of this neuropathic activation, the nerves irritate other nerves. And one of the structures that they go to is the pelvic musculature. That's why it's very important to when you're examining your patient with interstitial cystitis not only to evaluate the bladder but also the muscle tone of the pelvic floor muscles.

If I find that the pelvic floor muscles are spastic and extremely tender, which we call pelvic floor dysfunction, it is crucial to recognize that and to refer that patient to a physical therapist. Unfortunately, not all physical therapists have experience with this disease. So it's very important to find physical therapists who are trained in women's health issues and have some background in pelvic floor pathologies.

Do you make dietary recommendations?

Yes, I do. I have lists of food to avoid that I can give patients that includes spicy food and acidic food and caffeine products and alcohol. Because of the potassium connection, foods such as bananas and cantaloupe melon are often irritating to patients.

Are there any treatments on the horizon?

One of the newer more exciting treatments that we're using in patients who don't respond to drug therapy is a technique called "neural modulation." And there is a device called InterStim, which is basically a bladder pacemaker that is implanted into the patient. Electrical currents from this pacemaker modulate nerve activity. I've done seven of them for my IC patients. And six out of seven have had a dramatic improvement in their symptoms where nothing else really worked.

What is your advice to people with IC symptoms?

Many women who have urinary tract infection-type symptoms, such as frequency, urgency and pain, are told by their doctors: "Oh, your urine test is negative. There is nothing wrong with you." These women, and men with urinary symptoms, shouldn't stop there because most of the time the culture that a doctor takes in the office is not going to show a chronic low-grade infection, which I feel is a risk factor for interstitial cystitis. But it's not normal to go to the bathroom every hour or to have sense of urgency all the time. So people need to keep on going until they find a doctor who will recognize that there is something wrong with them.