European Researchers Stop Using The Name IC

[icnmgrjill]

At last weeks 2006 International Symposium: Frontiers in Painful Bladder Syndrome and IC (Bethesda, MD), the European ESSIC Society announced that they would no longer be using the name "interstitial cystitis" in favor of a new name "bladder pain syndrome." They also proposed a drastic change in the diagnosis methodology that created a dramatic and hostile debate during the conference. Let's take a closer look at what was probably the most acriminious discussion to occur in the IC community in decades.

ESSIC is the European Society For The Study of IC/PBS. It was formed in 2004 by IC researchers and clinicians throughout Europe who, I believe, felt that their voices and expertise had not been heard nor were they respected in other parts of the world, particularly the USA. After an international meeting in Japan to create consensus on various aspects of IC, they split off from that movement and created their own society. Having met four times in the past few years, they announced (earlier this year) that they were proposing some drastic changes in the way IC was to be diagnosed and/or treated in Europe. They created a huge debate during the meeting last week among other researchers indicating, yet again, that international collaboration still has a long way to go before it can create world wide consensus on IC.

A panel of several European notable researchers made their proposal to a packed and surprisingly hostile crowd of predominantly American clinicians, though representatives were also present from Mexico and Japan. Joop van de Merwe, MD PhD (Rotterdam, Netherlands) presented the ESSIC approach to diagnosing IC. Jorgen Nordling, MD (Copenhagen, Denmark) presented the classification strategies for IC. Andrew Baranowski, MD (United Kingdom) had the unenviable task of justifying a name change for IC.

Simply put, ESSIC believes that the diagnosis of IC needs to be more rigorous and demanding with specific classification criteria so that it cannot be confused with other, similar conditions. Specifically, they require that a patient must have pain associated with the bladder, accompanied by one other urinary symptom. Thus, a patient with just frequency or urgency would be excluded from a diagnosis.

Secondly, they strongly encourage the exclusion of confusable diseases through an extensive and expensive series of tests including (A) a medical history and physical exam, (B) a dipstick urinalysis, various urine cultures, and a serum PSA in men over 40, (C) flowmetry and post-void residual urine volume by ultrasound scanning and (D) cystoscopy. Lastly, a diagnosis of IC would be confirmed with a hydrodistention during cystoscopy with biopsy.

One strong point in their favor is that they propose a ranking system based upon the physical findings in the bladder. Patients would receive a numeric and letter based score based upon the severity of their disease as found during the hydrodistention. A score of 1-3 would relate to the severity of the disease and a rating of A-C represents biopsy findings. Thus, a patient with 1A would have very mild symptoms and disease while a patient with 3C would have the worst available symptoms. It's not a bad idea to have a severity rating scale but there are other issues that will, undoubtedly, prevent this from being implemented in the USA and other countries.

Why a change in name? They feel that the term "interstitial cystitis" is not descriptive of IC because the "interstitial" layer of the bladder isn't really involved in the disease process. Furthermore, they felt that it should ONLY include patients who experience pain in the bladder. On the otherhand, they were quite resistent to the idea that IC might extend beyond the bladder to include IBS and, perhaps, endometriosis. We, for example, feel that IC is really a pelvic pain syndrome that involves other organs in the pelvis. They do not.

In any case, the primary argument against this is COST. Here in America with such rampant underinsurance or lack of insurance, few companies would support the idea of expensive testing. Certainly many countries lack the basic equipment to do this testing and/or lab work. It simply didn't incorporate the day to day reality of medical care in a non-socialized health care system. And I have to say that the Europeans really seemed oblivious to the day to day reality of the american medical clinic. Their response to our concern about the cost of these procedures was basically "That's too bad."

Secondly, a name change now could be disastrous to the public awareness campaigns which have been launched throughout the world, particularly in those countries where IC has recently been approved for disability insurance. It will also create tremendous confusion among doctors and the public and, basically, ignores the last 20 years of extensive PR campaigns.

Thirdly, it's a much more invasive and traumatic method of handling a new diagnosed patient. The trend in the US in the past few years is to start the diagnosis process without invasive, traumatic procedures, perhaps by using the PUF or ICSI questionnaires. If, after 3-6 months of therapy, a patient does not respond, then more invasive diagnostic testing is suggested.

My conclusion is that it's premature to narrow and confine the name of this condition to "bladder pain syndrome" when research presented the very next day at the conference showed substantial similarities between IC and IBS, particularly in the nervous system. I don't believe there is evidence supporting that IC is only a bladder disease. I think that it is, in fact, a pelvic pain disorder that can involve other organs as proven by the thousands of patients who also struggle with IBS, vulvodynia, penile pain, endometriosis and the like. Clearly, there is a piece to this puzzle that we have all yet to find. Until that happens, having a "generalized" name makes far more sense.

PS. My question is this. If they don't believe in the name IC... why haven't they changed the name of their professional organization? Go figure!

Jill O.

[vm]

Simply put, ESSIC believes that the diagnosis of IC needs to be more rigorous and demanding with specific classification criteria so that it cannot be confused with other, similar conditions. Specifically, they require that a patient must have pain associated with the bladder, accompanied by one other urinary symptom. Thus, a patient with just frequency or urgency would be excluded from a diagnosis.

Boy, that would have knocked me right out of a diagnosis. I've never had pain - just intense discomfort.

[melanie626]

Interesting, thanks for sharing. I can imagine the debate. I agree, why keep the name of the group the same but demand something so stringent and you are so right, the name change would so muddy the water on all the public health efferts! Lets hope it doesn't catch on!

Thanks Jill.

[ICNDonna]

I'm very glad our doctors in this country have rejected their recommendations. They just don't sound very realistic.

Donna

[blendno14]

Hi,

this information is very interesting, thanks for sharing

I would wish that these doc do something for the patient and not just for the research - I don't get the feeling this is the same thing here..... What do they gain in excluding patients that have no pain? I don't understand.....

Regards form Germany.....

[BaltoDCIC]

Jill:

I felt it was such a waste of time for the European group to veer in another direction. However, if that is what they wish, there is nothing the Americans or other nation groups can do. The Europeans sure seem determined, but so did all of the researchers who stood up at the microphones to challenge their view. Those challengers proved dedicated to making progress and I'm not too worried about what the Europeans decide. They'll just, unfortunately, fall behind.

Despite the controversy, this meeting blew me away! I attended the last physician meeting at the ICA's 20th Anniversary and I couldn't believe how far research has come. Often, I am asked by many patients in my support group if I feel there will be a viable treatment or cure in our lifetime. I can now say, "Absolutely!">

Tina Nachodsky ~ Group Leader
The Baltimore/Washington DC
IC Support Group

[blendno14]

and I'm not too worried about what the Europeans decide. They'll just, unfortunately, fall behind.


that is exactly what worries me most... if they have the wrong attitude to this disease, then what about us here in Europe?..:mad:

[BaltoDCIC]

blendno14:

What I believe will happen is there will come a point where the Europeans researchers will have to measure their progress. If other countries are ahead, and patients like you are in the know about foreign research and challenge them, then they will have to get up to speed. The great thing about the international meetings is that it lets everyone know where they are in the research continuum. Who knows, maybe they'll continue to make discoveries despite the strict definition. I wouldn't lose hope. After all, it wasn't too long ago the the NIDDK had to loosen their definition up because it precluded too many patients.

Perhaps these folks have "Ivory Tower" disease and the European patients can cure that by demanding progress and direct donations towards research to reward just that, progress. Nothing talks like money, that's for sure.>Tina

[BaltoDCIC]

P.S.>blendno14:

I hope my comment about not being too worried about the Europeans wasn't perceived in the wrong context. I wholeheartedly embrace all patients, not just the American ones or those who believe that the American researchers are the only ones who have valuable contributions. That is absolutely untrue. The Europeans have a lot going for them that is different than what American medicine has to offer. I respect those differences and understand that cultural differences also play a role. Americans are brash and jump in, Europeans are more conservative. There is value in being conservative too.

No matter what, somewhere along the line, there is someone who will make the key discovery, like the recent discovery of serotonin's role in SIDS (Sudden Infant Death Syndrome). Anyone ignoring this discovery in future SIDS research will look like an idiot. And doctors hate looking like they don't know what they're doing, right?:smile tee >Tina

[glassd18]

I agree tremendously about it damaging the IC publicity efforts put forth so far, and the insurance companies hear are confused enough as it is. It would be damaging for patients. Great article Jill. Thank you.

[~*~Christine~*~]

Totally agree with you, Jill, changing the name to "Painful Bladder Syndrome" not only secludes it to a one symptom disease but also a one area disease, which IC is not.
It also makes it sound like a pseudo-disease

Just a bad move on the ESSIC, as they should be more worried about finding treatments or a cure and getting the disease known to the public rather then focussing on semantics

[Katrina]

Not very thrilled with that at all. I am glad the USA hasn't taken this on. That was my big problem with the name PBS....what about those patients that either don't have pain???

[talksick]

Wow that's pretty dramatic. :( This is bad news...I worry that it could set the whole IC community behind....not just those in Europe. We need as many researchers on board as we can get. It doesn't help to have divisions and rivalries between countries....we should be working together to tackle this thing.

I thought the IC community as a whole was moving toward a broader definition of IC. I don't know if I would qualify as having IC or not under the new European model. My main symptom is constant bladder pain/pressure. (Only when I'm in a flare do I have frequency and urgency.) It's important to have this broad definition so everyone can get the help they need.

And I believe Jill is right I think there are other systems of the body involved besides the bladder. I have always had intestinal symptoms as well and ever since the IC started I've noticed my body is different.
Kim

[Katrina]

Well put Kim, I agree....ever since the IC in me my body has been different too! :grouphug: A different name may be more appropriate....and there may be different forms of IC that separate us....but I also beleive there is something that connects us.....a broader defination that has types...A, B, C, or whatever would be more appropriate to me.

[Silverfox]

While living in Europe, I have always received excellent and very kind care for myself and my family. I was told by a top European Urologist that "he did not agree with the US Doctors" He explained that they have always believed that "TRUE IC IS VERY, VERY, RARE!"

Well now, we have taken that name Interstitial Cystitis for our disease. Maybe, we need a different name for a disease that is systemic throughout the entire body and the bladder. This top urologist did say that I "absolutely did not have Interstitial Cystitis." He also told me that my bladder pain was real and I was not crazy. Only four months later, after I returned home to the US, I did learn that I had another disease that is the cause of all my health problems including my bladder symptoms. I am doing much better now, with very good care here in the US. Things have improved here in the US for patients.

One thing about giving patients a number/letter rating, this does not help some who start off mild and then suddenly wake up very severe change in their symptoms. How do you get help when your conditon changes?

Sorry about all the hostile, bitter feelings, but maybe some competition will help reveal the cause with a totally new name.

The only people in this world who need to feel hostile and bitter, are those who suffered without any treatment, and those that were treated very poorly.

Sincerely Silverfox :cat:

[green_the_fish]

Jill, thank you for posting this.

I'm trying not to get hostile or bitter here, but this quite honestly makes me upset, and the ICN is the only place I have to really express my thoughts about IC.

See, I think it just doesn't make sense to exclude IC patients who don't experience pain. As us ICers always say here at the ICN: we all are different. I've talked to many people here who have been diagnosed with IC, but don't have pain. What would their diagnosis be? More importantly, can someone please give me an operational definition of pain? Because I have always considered "pain" to be one of the most relative terms in medicine. Two ICers could have the exact same symptoms but experience them completely differently. One could interpret the sensation of constant urgency as "painful", while another ICer, who may have a higher pain tolerance, may just think of that sensation as "intense discomfort". So, would that mean that the first patient has IC, but the second one does not? That makes no sense!

Secondly, why are they so intent on excluding any IC sufferers? Do they know what it's like to be excluded because one does not present with the traditional symptoms of IC? I developed IC two years ago, when I was just 15. I know my My cysto+hydro clearly showed I had IC. But, when my mother inquired about the results of the report, the urologist told her that it was only "a little red", and there was no reason to worry. Although he had diagnosed me on paper, he never told me I had IC. I think it was because of my age. Some doctors still tend to think of IC as a disease only for older women. I only found out that I had IC SEVEN MONTHS LATER, when a different uro let me see the results! I was excluded because I did not fit their preconcieved notion of an IC patient.
Also, while I do experience pain, I don't have all of the traditional symptoms. I'm not nearly as sensetive to diet as most ICers, and I don't experience nocturia. Does this mean I should be excluded?

Patients like Vm are going to be left out if this plan is seriously implemented. They are going to go to their urologists with urgency, frequency, nocturia, diet sensetivity, and bloating, and you know what their urologists are going to tell them? They "can't" have IC, because they don't fit the narrowly defined criteria set up by a bunch of doctors in a lab. These are doctors who, most likely, have never experienced IC symptoms a day in their lives. You know, I just think "bladder pain syndrome" is a term that will exclude all patients who don't experience pain.

While the idea of ranking people according to their level of bladder damage might be useful, it is not very practical. And, I have already raised my objections regarding rating people in terms of their "pain".

And, if IC is isolated to the bladder, why do so many patients with IC also have allergies, vulvodynia, endometriosis, and pelvic floor dysfuntion, like Jill said?

I can understand perfectly why the response to these ideas was so hostile. I think that, like blendno14 said, the European doctors are thinking more about their research than about real patients. I want them to get off the platforms and try implementing their suggestions in the real world. Tell them to call in tens of thousands, if not hundreds of thousands, of IC patients and tell them, "Oh, sorry, we changed the criteria for your disease; now you're back to being undiagnosed. No, we don't know what you should tell your insurance companies. Bye." Now that would be a hostile response!

I agree with what others have posted so far; let's try to be inclusive instead of exclusive. Let's help patients; not leave them out!

Now, here's my final point. Think of all the time and money that would be spent implementing all of these ideas, particularly the global name change. Now, think of what could happen if all that time and money could go into actually finding us a CURE!

[BaltoDCIC]

I just talked with someone in the IC research community and asked a very basic question, "Were the Europeans included in the discussions to change IC to PBS in the first place?" The answer? "No, they were not included."

Historically, the US does not base all it's medical research on what the Europeans do and vice versus. This isn't so much a surprising new finding, as it is a jolt to our expectations.

Medical research is continuing as it always has in our respective countries and the European patients will still benefit. As long as European doctors continue to attend IC conferences, their minds will still remain open to US research and the US will remain open to European research.

It is unfortunate that many of you couldn't have attended the meeting to see what I saw. The PBS/BPS dust-up was a very small portion to the overall conference and it certainly didn't cancel out all the other great accomplishments occuring in the IC field. However, if patients focus only on the negative and, in this case, the fact that the Europeans are working based on a different definition, well, that's just throwing the baby out with the bath water.>Tina

[green_the_fish]

Alright, well. The subject of IC is an inherently emotional topic, especially for a 17-year old bipolar girl like me. Sorry if I offended anyone.

I guess I'll leave this thread before I stir anything up :)

[Trishann]

I can almost guantee none of them have IC. If they suffer like we do, this outcome would be different. It is a shame that people will suffer because of their ignorance and lack of compassion.

[~*~Christine~*~]

One thing about giving patients a number/letter rating, this does not help some who start off mild and then suddenly wake up very severe change in their symptoms. How do you get help when your conditon changes?

The article says they would rate the severity based on the visual symptoms seen during a hydrodistention:

"Patients would receive a numeric and letter based score based upon the severity of their disease as found during the hydrodistention"

But yah, you're right, the bladder can change for better or worse so unless an annual hydro was done the ratings system would be pointless.
They should have stuck with the ratings they originally used of mild (signs of inflammation and possibly some pin-point bleeding), moderate (obvious signs of inflammation and pinpoint bleeding) and severe (obvious signs of inflammation, pin-point bleeding and hunners ulcers)

[~*~Christine~*~]

I can almost guantee none of them have IC. If they suffer like we do, this outcome would be different. It is a shame that people will suffer because of their ignorance and lack of compassion.
tis true, tis very true. People just don't care unless you die from the disease or show physical signs of disability, which is a sad bias many medical experts have

[med_head_09]

i think that part of the reason they are wanting to separate/differentiate between types of IC patients is because generally the same medicine will not treat such a wide range of symptoms. American doctors have thought for years that IC is really a group of syndromes held together by the complete lack of knowledge. Diseases usually have rather stringent criteria. I am not saying it is right to exclude the non pain patients, as I do not have typical IC pain, but before I had IC they called it frequency/urgency syndrome which they speculate has different causes. probably why frequency/urgency pts respond to interstim, while pain pts do not. I am sure there are other instances where there are differences. I know that it would be frustrating to try and do trials on such different pts. It will throw off data if there really are different diseases lumped together...if there is something that works for pain pts, but not those without pain yet they are all in the same trial, the results are going to be thrown.

I am really just rambling, so I will stop now.
~J

[sami4]

One of the reasons a lot of Uro's were upset over Gyno's getting in on their act and offering a simple Potassium test to diagnose IC and then RX meds to treat it was simple-money. Hydro's are billable to insurance companies, give them information that may or may not be helpful, the treatment and meds to try are still the same.
To try to complicate this by implementing a convoluted system of diagnosis when the treatment is still the same trial and error with meds, is just plain silly and overkill.
You are going to find a lot more IC diagnosis in the near future as many Gyno offices are now screening for this and doing Potassium tests. I say good for them, any help people can get that are suffering is a good thing. Making something more bureacratic, and complicated is just one more reason for insurance companies to refuse to pay for meds or treatments.
Sammie

[slukic]

For us who alternate between living in US and Europe, we know way too well
that the doctors and researchers should and need to be connected.
A lot has been said on this topic but to add my 2 cents: IC community worked so hard to make this a recognizable disease that this look to me as a step back. Should all the research papers, web sites and organizations be rewritten? And we are not even close to have a cure!
Further more, we can not find a cure until we cannot diagnoze it correctly. I guess this is European attempt in that directions but it might do more harm than good.
For example I do not have bladder pain and lately not even bladder tenderness but my urethral symthoms are strong (burn and pressure).
Actually I think I have some kind of female prostatis and when I read about male one .. the symthoms and treatment match quite well with ...IC.

[Meemer]

What surprises me is the arrogance of these European doctors. No one knows enough about this disease to change anything. I realize the medical community is trying to get a grip on this, but eliminating urgency from IC is like eliminating fever from the flu. It is an integral part of our disease.

I think changing the name from IC to PBS would be good, because public recognition of our condition is critical. The name "interstitial cystitis" is too confusing for most people to understand. Whenever I mention the name, I always get these weird looks and I've always had to repeat the name. If changing only the name to PBS, not the criteria, is for public recognition and fundraising efforts, then I'm all for it!>Meemer

[sacausa]

Personally, I think there is a certaint sense of stigma associated with a "syndrome" and not with a "disease." If I were to tell my friends that I have "blah blah blah syndrome" they would be much less receptive to seeing it as real than if I were to say I have the following disease called Interstitial Cystitis. I also think that the IC diagnosis should be limited to the bladder because not all IC patients have the other related illnesses such as endo or IBS. (I also have endometriosis but I think that if those illnesses were included in the diagnosis that would exclude many patients from an accurate diagnosis) Also, many diseases are related but still called by different names, right? For me, I would just like for it to have a more permanent name instead of one that ends in "itis" which implies that there's inflamation which is most likely temporary....

[BrookeB]

I want to keep it as a disease because first of all I thought the definition between disease and syndrome were different number 1. Also disease has so much more credibility, besides there are so many different bladder problems so I don't think PBS is definative enough. Besides IC has become very recognizable. Also if people hear the name of it and it is this long they ask me abou it more than they ask about my muscle disease. Chronic Myofascial Pain is now a disease not a syndrome and that change alone has gotten more respect from doctors. Ok maybe a few :). I just don't think changing will be good, I for one don't want to start describing why the name has changed as well!!!

brooke

[webslave]

I agree with your position, Jill.

My own efforts to come up with a name resulted in PELVIC MYONEUROPATHY. I feel it covers a much broader range of etiologies and symptoms.

What is pelvic myoneuropathy?
http://www.chronicprostatitis.com/forum/viewtopic.php?p=3095
http://www.chronicprostatitis.com/myoneuropathy.html

[broken_smile]

I say to hell with the name and what they call it they need to be concentrating on finding a cure and better treatment options. I hate to know these conferences waste time like this when they could be spending it on the real issue and the hell that we live in with this crazy disease. This disease has been documented over 100 years ago and they still act like they don't have a clue I don't think enough of us have this disease to benefit the researchers, doctors, and drug companies. It is all political and it boils down to there is not enough profit in this disease for them to be bothered. I remember reading and article on IC about a doctor during his training his instructor said to all the urologist there that there is this bladder disease called IC that little old ladies will come in to see you about and they will worry the hell out of you but it is all in their heads. When drug researches produced Elimron that made the price to be high as hell and for people that didn't have drug coverage was trying to figure out how the hell to get it thinking it was the miracle drug (which I know it is a miracle drug to some and I am glad). I was one of them at the time that had no drug coverage and on disability and husband wasn't being paid very much and I tried to get help from the drug company that makes Elimron and was denied. I guess you would have to be at the bottom of the bucket for them to help. Well the European IC people are coming up with more criteria to be diagnosed for IC don't you see it is all about how much money they can make off our sorry lot in life. Like the girl that said she would have been excluded because she didn't have pain but discomfrot that sure would have been hell for her before she could get any treatment and how many doctors she would have to go through just to get some help. I have nothing against European's in general but when it comes to this disease I don't care where you come from this is not funny. IC is still not well known and to change the name in the middle of the game will only confuse everybody to the point they will pay us no attention if we are that wishy washy. Well hope I have not affended anyone because that was not my intention I am just venting and having a major flareup right now.:cussing: :bonk:

Love,
Broken_Smile:pray:

[Moonheart]

I agree with you. Thousands of dollars go into these meetings I'm sure, and if they can't come up with something useful then they should have to pay for the meeting themselves.

Every 15 seconds there is a new case of IC diagnosed. So I would say there is enough need now for them to get off their butts and do something productive.

It may not seem like alot, but 10% of all profits from my website are going to go to The ICN. I have kids to feed and I can't hardly do anything anymore or else I'd donate all of it to the ICN. We need help and we need it now. We all have to pull together and do whatever it takes to cure this disease!

Our motto should be, "Not one more day of suffering, not one more sufferer!"

Let's put a stop to this NOW!

[Bad Cat Beta]

Pain was not realized until irritation was subdued after diagnosis via hydrodistension test. Unfortunately, just came from a visit with one I.C.’s leading authorities who still uses that criteria. He did misdiagnose me 7 years ago as did Stanford and the Mayo Clinic, etc. All failed to do a distension test.

Boy, that would have knocked me right out of a diagnosis. I've never had pain - just intense discomfort.

[Berkshire Road]

It surprises me to read this, because I have been spending some time on France's largest IC support forum -- and everyone there calls the disease interstitial cystitis (la cystite interstitielle). This site also pulls in French-speaking Belgians and Swiss, and the occasional German, so it seems that it would be fairly representational of Western Europe in general. There is no mention on the site itself of anything that might be translated as "bladder pain syndrome," and everyone refers to it as IC (well, CI, in French).

So it seems to me that the researchers may have made their decision, but doctors and patients are pretty much staying with the old name. I thought you would be interested to hear this, Jill.