Carin Willis: Good morning Dr. Rosenberg, thank you for taking my call this morning. This interview will be posted on my IC website and blog and for full disclosure purposes I am an IC patient- I appreciate your time. Let's start out with a question: How has the criteria for diagnosing IC changed in the past decade?
Dr. Rosenberg: I was originally trained in urology and I was taught, along with all the other doctors in med school that IC was a 'wastebasket' disease. Excuse the phrasing but that is what it was called, meaning we were instructed to use that name when no other medical diagnosis presented itself. This was during the early 1990s. At the time, the medical community thought that IC only occurred for a fraction of a percentage of the general population. The truth is that IC has a prevalence as high as 4-13%. I have two large epidemiological studies showing this.
A few years ago, 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 they had a challenge for me in that if I was seeing as much OAB in my primary care office, I was missing IC patients. This same person challenged me to develop a protocol for identifying the IC patient in the primary care office.
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 initially 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.
Carin Willis: Those numbers are huge! That is amazing work in only a year's time.
Dr. Rosenberg: Yes, the data is finally able to capture the real number of people with IC. Urologists are taught to look for Hunner's ulcers but this is not a valid way of diagnosing IC since it is a symptom based disease and the ulcers are not present often, which reminds me of the National Nurse Health Study (both 1 and 2). Are you familiar with those studies?
Carin Willis: No I am not familiar with those studies.
Dr. Rosenberg: The National Nurse Health Study presented a questionnaire to 100,000 women asking them: “Do you have IC”. I am sure that you can guess the outcome of the questionnaire because at that time only a fraction of a percentage of the population was diagnosed with IC (if their attending primary care doctor even believed in IC) then a study asking a population of this size if they had IC the answer would be 'no'. The second part of The National Nurse Health Study tried digging a little deeper a few years later by phrasing the question as “Do you have IC as diagnosed by a hydro-distension?” Again, the questionnaire did not bring accurate results as the medical community would only suggest a hydro-distension to diagnose IC if the doctor knew about and believed in IC as a diagnosable disease. Which brings me to the question of when you look at how many people have the three hallmarks of IC: urgency, frequency and pain. How do you evaluate that it is IC? When people visit me in my office and they present urgency, frequency and pain my conclusion is IC or UTI as there isn't much else that it could be (unless they have blood if they have kidney stones, etc. then I test for that). But if I see urgency, frequency and pain presented, what does that mean is the origin?
Carin Willis: It means the bladder is the origin.
Dr. Rosenberg: That is correct. So we isolate the bladder and no tools within a general office setting are necessary. If I numb someone's bladder [with Lidocaine and bicarb] within my office and their bladder pain goes away then the diagnosis is likely IC. There is no reason for a cystoscopy or hydro-distension So remember that IC is a symptom diagnosis not a pathological diagnosis. One of the doctors within my office had a woman present with bladder pain and a history of 'chronic UTIs', and urinary frequency and urgency. He asked my advice within the first five minutes of her appointment and I asked him if had considered IC as a diagnosis. Within ten minutes he numbed her bladder and her pain went away. The patient claimed that she had not felt that great in years! So within fifteen minutes of her appointment she had a diagnosis and her bladder pain was gone.
Carin Willis: That is incredible! I am of course remembering my own long battle for diagnosis and treatment of IC as you are describing this scenario and wishing that I had had such an enlightened primary care doctor many years ago.
Dr. Rosenberg: If I were to guess I would say it took many years and many trips in an out of doctors' offices trying to get someone to listen to your pain and symptoms?
Carin Willis: That is correct. I am sure my IC story is similar to many people with IC in that the road to a diagnosis was a long and painful one. So in fifteen minutes you were able to diagnosis and treat her IC pain-that is incredible to hear as an IC patient.
Dr. Rosenberg: Yes. And that is a key point right there. Treat early! The earlier that IC is treated the better it is for the IC patient so that further damage does not occur. The data shows that it takes an average of 5-7 years for the patient to get treated for their IC. We can change this by empowering the primary care physician. Again, the sooner that we can treat IC the better and the reason for this is that the bladder, vagina and bowels have a protective glycosaminoglycan layer, which protect a healthy person from all the nasty stuff in the urine. You might hear it described as the GAG layer. People often wonder why urine does not burn the bladder as it a caustic agent. The reason it does not burn the bladder is because of the protective GAG layer. If the layer gets destroyed for some reason, like what happens in IC patients, the layer gets compromised and then you get pain.
Carin Willis: The pain of IC does make a lot more sense when you explain it like that. My next question would be is awareness that IC is not just a women's disease becoming more widely known within the medical community?
Dr. Rosenberg: Yes, I have recently written a paper about this (about men with prostatitis). It still seems that men with IC are not as common as women with IC, but that might be because men with the symptoms of pain, frequency and urgency are diagnosed as having Chronic Prostatitis. Chronic Prostatitis in my opinion probably equals IC. Sometimes we get caught up in the naming, but if the main three symptoms are there, it is the same disease.
Carin Willis: So do you feel that the diagnosing tools and treatment plans are now becoming more standardized within the medical community?
Dr. Rosenberg: Standardization is on the horizon, but it is hard to be completely optimistic. Some doctors are getting there. Again, those of us in the medical community were taught in medical school that IC is a wastebasket disease. It will take a lot more research papers, seminars, training, etc. on what we've recently uncovered about IC for standardization to continue to occur within the future. Again, we need to get away from referring IC patients to a urologist for painful and unnecessary tests to diagnose IC. A lot of doctors and urologists still rely on the potassium sensitivity test, which I'm sure you know from a personal level can be quite painful to your bladder. If someone's already in pain, don't give them more pain! Numb the bladder and give them comfort and give the diagnosis of IC early so that you can start treating it.
Carin Willis: I was referred to have a potassium sensitivity test which I refused but I did have other painful and invasive tests such as a cystoscopy without pain medication. Oftentimes, there is pain associated with what an IC patient eats. Is diet modification still something that you recommend for IC patients?
Dr. Rosenberg: Yes, absolutely! It has been proven that diet modification can be very useful for IC patients. Unfortunately there is no set list of what not to eat but we can all agree that food items with high levels of acid such as tomatoes seem to be a culprit for most IC patients. Again, this goes back to the compromised GAG layers in the IC patient. I suggest an exclusionary diet for my IC patients by isolating known irritants and allow the patient to gradually add in foods to measure what may or may not be tolerated. It is not an exact science but diet does play a role in the IC patient treatment plan. Behavior is a huge part of this as well in order to determine what is or is not working for the IC patient. The more proactive and involved the IC patient is with their diet and treatment plan, the better hope for them as an IC patient to find some relief of their pain and symptoms.
So let me ask you this in relation to your own IC-do you have dyspareunia [pain during or after sexual intercourse]? Are you familiar with that terminology? Also, I would assume that you think you have a smaller than average bladder and you have known since childhood where the restrooms were located at every place you visited.
Carin Willis: Unfortunately, yes I have experienced dyspareunia with my IC. And you are correct about the fact that I probably urinated more than my friends as a child. For a moment I thought you were going to bring up having IBS since I have dealt with IBS since childhood.
Dr. Rosenberg: I am sorry to hear that and the reason that I could make a correct assumption is that nearly 100% of women with IC also have dyspareunia. Again, it's a matter of retraining primary care doctors in the screening process. There is connection as well for some people between IBS and IC. Also, I'm sure you've heard there is a huge part of the population being treated for OAB, but the doctors need to know if the patient has OAB with pain, to change the diagnosis to IC. And then from there the goal with any IC therapy (of course after early diagnosis) is: rebuild the bladder and break the pattern of pain and inflammation. Again the initial educational process is wrong for many primary care doctors and they need to know the minute they hear: urgency/frequency/pain they should be thinking IC. Awareness is key.
I believe that treating IC patients has made me a better doctor because they have taught me to listen better and to pay attention. I feel that both the doctor and the patient need to own the problem and have a time line for trying different treatments instead of sending an already overwhelmed IC patient home with only one treatment choice and no time line for testing it before moving on to something else. Otherwise the patient will feel like they're up a creek without any other options if the first treatment doesn't work. Again, along with medical treatments, food modification is important and if I have a patient saying they have food allergies or pain associated with eating, that tells me they have something affecting the GAG layer of the bladder. High levels of potassium can cause pain. The two most common trigger foods are orange juice and tomatoes but of course the list of foods that can hurt the bladder is much greater than two foods.
Carin Willis: Dr. Rosenberg you've just touched on all of the main things that affect an IC patient's daily life: pain, urgency, frequency combined with dyspareunia combined with issues eating and having to try a sometimes extreme diet modification. All of these things in combination create a lowered quality of life for the IC patient.
Dr. Rosenberg: That is correct Carin. Quality of life can be greatly affected by IC. Doctors should also be aware of this dynamic when treating their IC patients.
Carin Willis: Well Dr. Rosenberg our time is up for our interview. Thanks again for the interview this morning, I know it will be very helpful for IC patients to read your insights about diagnosing and treating IC on the IC support website. And even more importantly thanks for the wonderful work you are doing in the world of IC on behalf of all of us IC patients.
Dr. Rosenberg: Thank you Carin. I would also like to offer that if any IC patients would like to email me I would gladly take their questions at my personal email (please note the email address contains three 'ts' in a row): firstname.lastname@example.org
Carin Willis: That is wonderful. Thanks again, Dr. Rosenberg.