Interstitial Cystitis

Article Conference CoverageFrom International Pelvic Pain SocietySimsbury Connecticut - April/May, 1999

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Dr. Paul Perry: "I'm Paul Perry, Chairman of the International Pelvic Pain Society, and we're here with Dr. Jill Peters, who is one of our speakers today. Dr. Peters, if you'd just introduce yourself and tell us where you're from."

Dr. Jill Peters: "I'm Dr. Jill Peters, I'm a urologist in Connecticut. I'm the Director of a continence program for Women's Health Connecticut, which is a statewide network of gynecologists, and I practice urology."

Dr. Paul Perry: "As you know, we have two main areas of focus in the IPPS, one is to educate patients, and the other is to educate physicians. If we are going to talk to the patients in a way that would explain to them what interstitial cystitis is, and what some of the symptoms they need to watch for are - how would you go about presenting that?"

Dr. Jill Peters: "Interstitial cystitis is a chronic problem of the bladder, and it frequently presents with urinary frequency - normally you having to get up at night more than two or three times, frequency throughout the day, sometimes urgency where you have an incredible urge to have to get to the bathroom very quickly, and often times pain. The pain may be somewhat of a pressure, it's often described as a superpubic pressure that makes you feel like you need to get to the bathroom. Sometimes it can be pain with intercourse or pain in the urethra."

Dr. Paul Perry: "As far as the clinicians out there - could you give us some idea about the spectrum of disease that we see that will specifically relate to chronic pelvic pain whenever we are investigating it?"

Dr. Jill Peters: "Again, as a clinician, often times we see women or men with what we think of as a urinary tract infection - frequency, urgency, sometimes discomfort. But the key is if you're seeing those patients, and they're having kind of up and down symptoms, and there's not really a positive culture - then you should always suspect interstitial cystitis. Often times people will have symptoms for years, and we kind of label them as chronic cystitis or urethritis, and it's really a symptom complex that you need to think of. Again, whenever you have frequency, urgency, and any superpubic discomfort or pain - typically that discomfort is relieved with voiding - that's one of tale-tell clues. Again, you just need to think of interstitial cystitis."

Dr. Paul Perry: "What are some of the other symptoms that might go along with interstitial cystitis? Is there a problem with pain with intercourse or any other medical entity?"

Dr. Jill Peters: "About 60%-70% of women may have pain with intercourse, they often describe this kind of pain as deep inside the pelvis. Many of these people will also have migraines or irritable bowel, a pain on the external part of the vulva, and sometimes there are other associated problems - fibromyalgia or joint problems. There's a lot of concomitant diseases that go along."

Dr. Paul Perry: "Why do you think it is that there seems to be more women with interstitial cystitis than men?"

Dr. Jill Peters: "I think part of this has been just our knowledge, as urologists we're the ones that primarily make the diagnosis of interstitial cystitis. It's diagnosed first because you think of it as a possibility but in part it's a diagnosis based on excluding other things. In men, we tend not to look for it and to do the tests that would make the diagnosis. Men tend to get labeled as having prostatitis or chronic prostatitis. So I think we see it more often in women because we're looking for it more often in women, and I think as we get further along understanding what this disease is, we may actually see it more often in men. That's the trend that we're seeing right now."

Dr. Paul Perry: "We've talked about the symptoms that these patients may have, what about when a patient presents at your office with those symptoms? Just kind of go through your examination if you would, and let me know how you pick up interstitial cystitis."

Dr. Jill Peters: "Usually the patients have already been treated, for example, with recurrent urinary tract infections and had negative cultures. I'll go through a pretty thorough history - seeing how far back they've had symptoms. I'll ask them if there's any things that cause a flare up of their symptoms and often times diet, caffeine, alcohol, intercourse, or their menstrual cycle may cause a flare up of symptoms. Those are all clues that that's what this could be. Next, we'll have them go through and look at their medication, and see if there are any concomitant diseases. Examination is basically like a typical gynecological exam, we're looking carefully to see if there's any tenderness along the urethra, any tenderness in the vagina. Sometimes women can get little cysts or diverticulum that can mimic this, and normally the exam is really pretty normal other than some mild tenderness in the pelvic area. Urinalysis is normal in the most part, so what we'll do is give them some dietary instructions, and have them go home and do what's called a "voiding log" to try to see if they're voiding small amounts or large amounts of urine throughout the day. Then based on that, if there's a high enough index of suspicion, we'll usually then bring them in for a test which is typically done under anesthesia. It involves looking inside the bladder and actually distending the bladder, and that's how we usually will make the diagnosis."

Dr. Paul Perry: "Is there any one physical finding that you can think of that would be the most typical for interstitial cystitis?"

Dr. Jill Peters: "Not really, it's not something that you can pin point on physical exam, it's usually the history more than anything. If you really talk to patients, some people will have frequency because they'll leak if they don't go to the bathroom very often. With interstitial cystitis, it's almost like this nagging pressure feeling in their pelvis that makes them feel like they have to go to the bathroom, and if they don't go - if they're stuck in traffic - they'll actually start having pain. Characteristically, that discomfort or pain is relieved once they urinate. So because they only get relief with voiding, what they tend to do is then start voiding very frequently because that's the only time that they really feel somewhat good. That's a classic kind of picture but there's a lot of variation along the line."

Dr. Paul Perry: "What do you think about the association between the pelvic floor dysfunctions and interstitial cystitis - why is that seen so often, and what can we do about that?"

Dr. Jill Peters: "Pelvic floor dysfunction is basically a muscle spasm of the pelvic muscles that kind of are the floor of the pelvis in which the bladder sits. I use the analogy if someone has a herniated disk in their back, the body's response to that pain in the disk is a paravertebral or a muscle spasm next to the spine, and that's a protective defense that we have that stabilizes the back and keeps the back from moving, and it helps the pain. In the pelvis, if you have pain whether it be from the bladder or from endometriosis or any entity that's causing pain even a bladder infection, you'll get a response - a natural response - I think, in some cases of a pelvic muscle spasm. And we see this after hernia operations, people have surgery then they can't urinate because the muscles are in so much spasm as a response to the pain. So I think it may be the pelvic pathology - the endometriosis, the interstitial cystitis, the whatever that causes the pain that then the body reacts by having this muscle spasm. That could be one scenario. We do see children that almost learn to not relax their pelvic muscles and become very dysfunctional at an early age."

Dr. Paul Perry: "In your experience, what treatments would you propose for a patient, and how would you present their course of therapy? Do you tell them that you have X% of a chance of being cured or how do you establish that?"

Dr. Jill Peters: "Interstitial cystitis is a disease that we don't know what causes it, and we don't have a cure at this point. There are maybe about maybe 10% of people who will have their symptoms spontaneously go away as oddly as it comes but for the most part, people with interstitial cystitis will either have lots of pain and very little frequency or they'll have lots of frequency and very little pain. The people that have lots of pain will tend to use medications such as amitriptyline or Elavil - things that focus more on pain. There are medications available to help to restore the lining of the bladder and make the lining more healthy. People that have lots of frequency, on the other end of the spectrum, with less pain will tend to focus more on the frequency, and medications like DMSO that go inside the bladder, and Elmiron which is a tablet that you take that helps to restore the protective barrier on the lining of our bladder - that works quite well. There are many different treatment options, and the key thing is that each person's a little bit different, and they're on different points of the spectrum - so we individualize it quite honestly."

Dr. Paul Perry: "Dr. Peters, thank you very much for being here on, and we thank you for speaking at the IPPS meeting today. I'm sure you'd want to acknowledge that there is hope for patients with interstitial cystitis."

Dr. Jill Peters: "Definitely, we're spending an incredible amount of money on research right now. There's great hope that within the next couple of years actually, we will have this thing figured out and hopefully have a cure for interstitial cystitis."

Dr. Paul Perry: "Thank you very much."

Dr. Jill Peters: "Thank you."

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