"Bringing the nations leading researchers, clinicians and advocates directly into the homes of patients in need."

Early Diagnosis and Treatment of Interstitial Cystitis
Research suggests that up to 13% of the general population may have symptoms of IC. 

Speakers: Dr. Matt Rosenberg, Medical Director of the Mid-Michigan Center for Continence

Moderator: Jill Osborne, M.A. President & Founder
Interstitial Cystitis Network, Santa Rosa, CA USA

Event Date & Description: June 6, 2006 - 2006 IC & PBS On-Line Patient Conference


Welcome to the fourth lecture in the 2006 IC & PBS On-Line Patient Conference, made possible by our generous sponsors: Akpharma (Makers of Prelief), Desert Harvest (Makers of Desert Harvest Aloe), Algonot (Makers of Cystoprotek & Algonot ) & Astratech (Makers of the Lo-Fric Catheter).

When I look for clinicians working with IC patients, I want someone who is well balanced in their approach to IC, who looks at all of the research without bias and who puts the patient first. Dr. Matt Rosenberg fits that to a tee! Not only has Dr. Rosenberg has completed ground breaking studies on the prevalence of interstitial cystitis in his clinic, he also has the courage to challenge the older beliefs and perceptions of the IC research community that, in his opinion, may be limiting our progress. He is, in my opinion, one of the brightest stars in the IC community today.

Many of you may have seen him in this Springs Healthy Body Healthy Mind documentary on Interstitial Cystitis, which is currently being broadcast around the nation. He was a surgical resident at UC Irvine and then completed his Urology Residency at Harvard. He is currently a practicing family physician and is the Director of the Mid-Michigan Center for Continence.


JILL OSBORNE- Welcome Dr. Rosenberg. How did you get involved with interstitial cystitis?

Dr. Rosenberg - Hi everyone. It's certainly nice to be here and I appreciate Jill's kind words. Let me tell you a little about myself. I'm a bit of a hybrid in that I'm trained as a urologist, but I transferred into the field of primary care, which really gives me a funny perspective in the world. I probably should explain why I did this.

I truly believe that the majority of urologic problems belong on the office of the primary care provider. My initial research and work has been in the field of erectile dysfunction and overactive bladder. I was at a research meeting on OAB to talk about the algorithms that I had created to simplify the diagnosis of OAB in my office. After I presented this data, I was approached by someone who said “I've got a challenge for you. If you're seeing as much OAB as you are in your primary care office, you're missing IC, which means that you're not treating patients who can really use your help. I'm going to challenge you to develop a protocol for identifying the IC patient in the primary care office.”

I scratched my head about this and thought, "I'm a smart guy and I'm not going to miss IC", but when I was in training IC was a wastebasket diagnosis. That means it's a diagnosis given when you can't figure anything else out. I was taught that IC patients are difficult to treat and that there were not a lot of them. Since the prevalence wasn't very high of IC, I said “I'll accept your challenge but I don't think I'm missing it.  I will screen for a month or two in my office, both men and women, to look for IC patients.”

If you think about the old prevalence data out there for IC, it suggests that IC is found in less than 1% of the general population. I thought I'd find maybe one or two patients. We then started using the PUF questionnaire (a diagnostic questionnaire that can help identify IC patients via their symptoms) in my office. You know how long it took me to figure out I was wrong?? About an hour.  All of a sudden, all of these high PUF scores came up and we thought “what the heck is going on?” I did these surveys for one year and collected information from 4,000 patients.  Almost 1,000 came in with PUF scores that were six or greater, which suggested that they could be suffering from IC. 

What does this mean? We're sitting there with all of this data and wondering what are we going to do with this. A survey is a good tool but it doesn't identify a disease. But I had to make sense of this data. I had all these patients who had symptoms that I didn't know that they had. Over many months, I personally called each patients up and asked them about their surveys. Their answers were amazing. Patients had urgency, frequency and pain and a lot of them thought it was normal because their mom, their sister or their friend had it. They thought that it was part of being a woman or a wife. I had one woman ask me "You're not supposed to have pain during sex?" I was amazed. So I asked all of them, "Are you having symptoms bad enough that if I could give you a magic pill to treat your problem would you take it?" Almost 200 said "Give it to me".

So, getting back to the challenge I accepted.  I was trying to develop an algorithm to treat all of these people and what I came up with has evolved over time. First I bring them in for a physical.  I've become quite fond of the potassium sensitivity test (PST) and I administered that to 188 people, and 160 were positive. At the same time, I set up an IRB to do a study where I tested the PST on 25 people with no symptoms so a PUF of zero, and none were positive on the PST. So, I had a very good control group.

Now, a side bar for a moment on the PST. I'm fully aware that some people argue about the PST because they question its legitimacy and they question its ability to define IC and the ability of patients to tolerate it. Let's talk about legitimacy. The data is pretty strong that the PST helps identify a problem in the bladder. If a patient tells me that they have pelvic pain, if I put something in their bladder and I reproduce the symptoms they are having, then that tells me that I found the source of the pain, thus putting potassium in the bladder provides useful information. Now, PST doesn't define IC but then no tests or surveys define a disease anyway, but it does give me tools to help in the process of explaining the symptoms and coming up with an appropriate diagnosis.

The third point is tolerability. I am fully aware of the issues on people saying that the PST causes pain. I like my patients a lot and I hope they like me a lot. The last thing I want to do is hurt them (I have lollipops in my office to apologize if anything hurts).  What I did in my office for everyone who got the PST, I gave them a survey to fill out on their own without me in the room, comparing the PST to other procedures that they had had in the office, and I found out that if I got rid of the PST because of severe pain then I would have to throw out other tests such as: pap smears, blood draws, sigmoidoscopies, rectal exams and rectal exams. In other  words, those other tests were rated worse for pain and discomfort than the potassium sensitivity test.

There's one thing that I won’t do with the PST. If a patient comes in with pain, I wouldn't give the PST and the reason for that is all I had to do at that point is to just eliminate the pain, which then proved that the bladder was the source of that pain. So, if a patient comes in with pain, I can use a simple instillation of lidocaine and bicarb into their bladder and if it turns off the pain, that tells me that the bladder is the source of the pain.

In doing my study, I found out that 166 patients out of the 188 that were positive with the PST. So, my best prevalence estimate in a primary care population was at least 4.4% may have IC by using the PST. On the high end, the data suggests that as much as 13% of the general population may have symptoms of IC if we rely on the PUF alone.

JILL OSBORNE - So, your study has presented dramatically different prevalance data for IC?

Dr. Rosenberg - No, that's not true. It's not dramatically different because the prevalence has always been high. They, the gurus of the IC planet, used the wrong criteria. The criteria that they used stemmed from a paper in 1978 from two fellows out of Stanford (Drs. Messing and Stamey) who said that to have IC you have to have symptoms, as well as no identifiable cause for those symptoms, and you have to have a finding on a cystoscopy of glomerulations.

Well, guess what. This has never been substantiated. It's also been proven wrong, but not after the damage was done, the touting of a low prevalence of IC. This kept it off of our radar because we thought it was quite rare.

Let's go back in history. A neanderthal is running around in the desert and he sees a horse with stripes and in comes the guy from the Harris poll and he asks Mr. Knuckle Dragger, how many "Zebras live here?" and neanderthal man says "None," because he doesn't know what a zebra is. He's been calling it the horse with stripes.

IC has been our horse with stripes. I don't think that chronic UTI's exist. In fact, if you tell me there's a patient with a chronic UTI you better show me bacteria. This idea that you can have a UTI without bacteria is WRONG. The idea that you can have pelvic pain with an unknown origin is WRONG. Why do people have hysterectomies for pelvic pain and still then have pelvic pain? Because we thought we were dealing with a horse with stripes.

A study published a few years ago in the Journal of Urology was a first symptom based prevalence trial for IC using the O'leary Sant Scale (done by Lepplihati in Finland) used the wrong survey. They didn't use a validated survey to do this like the PUF questionnaire. So, a year ago when we did a study that I'm very proud of, we replicated his study using the same number and age range of women in Michigan and we used the O'leary Sant, and we found the same low prevalence. But we also gave them the PUF, which showed a prevalence of 12.6%, unlike the O'leary Sant, which gave us a prevalance of .67%.

So, to make a long story short, did I show new data?? No! I looked at the data using the appropriate tools...and thereby was the origin of the zebra.

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JILL OSBORNE - Let's briefly walk through the protocol in your office.

Dr. Rosenberg - It's very simple. The symptoms I look for are urgency, frequency, pain, nocturia. If a patient has any or all of these symptoms, as well as a normal urinalysis and a physical finding of a normal exam but with pain on palpation of the anterior vagina in women and the perineum in men, that is enough to make an empiric diagnosis. However, I think its important to further define it as the bladder and this is where I use the anesthetic bladder challenge or the potassium sensitivity test.

Once I've identified IC, which can all be done in one visit, I initiate therapy. My treatment regimen has evolved. I use hydroxyzine to stabilize the mast cells. I use Elmiron to help regenerate the GAG layer.  I then put the majority of patients on an intravesical regimen of lidocaine, bicarb and heparin 3xs a week for 3 weeks, and I do this to break the pain cycle (aka rescue instillations).

I believe that if we wait, the average time of over seven years for a typical IC patient to get a diagnosis then we're dealing with a more difficult to treat patient. But, if we take that patient early on the disease process then our opportunity for treatment is going to be markedly better.

If you show me a patient who is refractory (non responsive) to treatment, I immediately question where was that patient years ago when we had a better chance to treat it. When we realized the prevalence of IC is much greater than had been previously thought then this will get onto the radar of the average primary care doctor and we can potentially limit those unfortunate refractory patients who become pelvic cripples. Some patients can become crippled by the pain in their pelvis.

JILL OSBORNE - One patient asks “What are your thoughts on a possible genetic origin of IC?”

Dr. Rosenberg - Absolutely and I can tell you, first hand, that I treat a lot of mothers, daughters and sisters. I've noted this hereditary link. I wish that I had more students to help review the data. It's not the ONLY cause but it's there.

JILL OSBORNE - Would you agree that, for some of us, the genetics have predisposed us to having a defective GAG layer, or that it prevents us from healing or slows down the healing process, aka the APF factor?

Dr. Rosenberg - Yes. It's the same reason why people with fair skin get sunburned. People may have a weak GAG layer for some genetic reason and they are predisposed to injury.

JILL OSBORNE - Leslie asks "What else do you think can trigger IC?"

Dr. Rosenberg - I think there are a lot of things, such as certain foods, that can trigger an event, but I don't think they can trigger the injury. Event = Pain. We know that stress can trigger a flare/event. There's a thought that maybe an infection starts the process, or maybe it's an environmental stimuli that starts the process. Or maybe there is some programming in our body that it just becomes deficient after a while. I hope that in years to come we can look back at these series and say “Of course that was it. Of course, it was exposure to “xyz”. What were we thinking??”

That will happen, but we haven't gotten there yet. We haven't evolved yet. The way that we evolve is understanding that this disease does not just affect a few, it effects millions of men and women.

JILL OSBORNE - Dixie asks "What about patients who really do have positive UTI cultures that don't respond to any therapy?"

Dr. Rosenberg - IC patients still do get UTI's. In fact, a young lady I saw today has been getting instillations and got a UTI. It's not the first time. We treat the UTI and then get back on course with their IC therapies which, in her case, were intravesical rescue instillations. If you are telling me that you have a patient who never gets the infection cleared and has positive cultures, then there are other things to look at. Whereas that IC may still be in the differential, we have to look at other causes as well, such as a deficient immune system.

JILL OSBORNE - Another patient asks about Hunner's Ulcers. Do you believe that Hunner’s Ulcers can respond to an intravesical solution or should they be removed first, etc. etc.

Dr. Rosenberg - I think that Hunner’s Ulcers are very, very rare. I think if I saw one, I could certainly recommend more interventions such as removal or cauterization because they may have an immediate response. Intravesical therapy would probably help as well, but the response time would be so long that I wouldn't necessarily put the patient through that.

JILL OSBORNE- What are your thoughts on the older instillations used for IC, such as Silver Nitrate, Argyrol, Chlorpactin??

Dr. Rosenberg - I personally wouldn't go there because I find no support in the literature for any of these. I don't even like the DMSO because I don't think the evidence is appropriate or compelling.

JILL OSBORNE - Meona asks "What do you feel are the new therapies on the horizon, if any, that might show promise??"

Dr. Rosenberg - Catching the patient early is the best thing that we can do in the world of IC. I have evolved to using a 2 to 4% lidocaine therapy which I have found tremendously beneficial. I don't think that InterStim is going to prove much, and we all know that BOTOX hasn't worked well. I'm also a research site for the Urigen 101 rescue instillation and I think it's promising. But, having said that, many are already using it. I'm already a believer in rescue instillations so I mix my own and have a home brew. Urigen is studying the safety of this product so that it can be actually be FDA approved as this agent. Currently, the use of lidocaine is off-label. So, what the urigen trial is doing is very appropriate, the reality is that a lot of us are already using it.

JILL OSBORNE - Silver fox asks if you've encountered a lot of hypothyroidism and/or neuropathies in your patients?

          Dr. Rosenberg - No, nothing is showing up.

JILL OSBORNE - BabyKahuna asks about any connection of bladder cancer with IC?

Dr. Rosenberg - No. There was a paper recently published that talked about IC and the misdiagnosis of bladder cancer, but the data was really skewed, and what the paper was looking at was the requirement of doing a cystoscopy on everyone with IC. My feeling, which is backed up by the data, is that unless you have hematuria (blood in the urine) there is no reason to do a cystoscopy. There is no correlation to date with bladder cancer and IC.

JILLOSBORNE - This brings up a popular question, the role of hydrodistention in the diagnosis of IC. There are still some providers who insist that patients must have a hydro before they will be diagnosed with IC. Your thoughts.

Dr. Rosenberg - LOL! I was lecturing to a group of urologists recently and I was showing them data on an evidence based approach to the diagnosis of IC, and I showed them a lot of data saying that there is no diagnostic value to a cystoscopy and hydrodistention. The only value of cysto/hydro MAY BE limited therapeutic benefit in the occasional patient. So, the urologist who asked a question about it got very upset with me

“You can’t tell urologists not to do cysto/hydros because we bill for those.”{ I answered "If that is the best that you can come up with, that is pathetic." I am writing a paper right now that will be published in October in the Cleveland Clinic Journal of Medicine where I will reiterate that exact thought.

I'll take this one more step. If I had a doctor recommend a cysto/hydro for a patient to make a diagnosis for IC, I would run the other way. Again, it may have therapeutic appeal, but not diagnostic.  I also sit on the credentialing board for two major insurance programs in Michigan and I have advised both of them that they should no longer reimburse for those procedures without a explanation from the physician as to why that is to be performed.

JILL OSBORNE - Meona asks "Do you feel that there is enough research currently being done on IC??? What barriers are researchers facing right now??"

Dr. Rosenberg - No, there is not enough research being done. My personal feeling is that the members of the “old school” approach to IC are blocking progress. I recently was at a lecture at a major meeting on IC and was listening to a fellow. He's a member of the "old IC guard" and his slides would have made a good wine given their age.. They were old and they were wrong. The prevalence data was a problem.  And, again, until we understand that the disease is more prevalent we are blocking research knowledge.

It is important to go shake the bushes on this one. We have to let people know that there are lot of people suffering with this. This is the way of the world. If one person has the disease, no one will help. If more have the disease, more will help. Even though we have published numerous papers on the prevalence, the old guard isn’t recognizing it, and, unfortunately, they influence the NIDDK grants.

JILL OSBORNE – Do you have any suggestions for patients who struggle with using catheters and/or procedures which require catheterization, particularly men who struggle with catheterizations for instillations?

Dr. Rosenberg - You know, it's tough. Men pose a very difficult problem. Rare is the male who is going to let you catheterize him, especially more than once. But I have had a couple  of men who have let me do a retrograde instillation of lidocaine jelly prior to using the catheter. Basically, that’s a urethral instillation where you just squirt the lidocaine in first to numb the urethra. You just hope it gets far enough. Be willing to try it. In knowing what I know about IC, I think instillations are a godsend.

JILL OSBORNE - Your thoughts on AUA this year... anything catch your eye at last month's  big urology conference??

Dr. Rosenberg - There was some buzz, but I didn't see anything out there that was new. I presented some new data. I was hoping to see more on APF, but I don't think that's going anywhere. We've stalled a little bit this year. Hopefully more information will come out at this Falls' NIDDK meeting.

JILLOSBORNE - Thank you Dr. Rosenberg for the gift of your time tonight. We so appreciate your thoughts, opinions and appearance.

Contact Information:

Dr. Matt Rosenberg
Mid Michigan Health Centers
214 N. West Ave.
Jackson MI 49201
Office Phone: (517)784-9189.

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