Talk:Interstitial cystitis

Recent changes
You reverted the edits I had done on Interstitial Cystitis stating that I wasn't following the Mos. Could you please give me more feedback than that?? What caught your eye that I was doing wrong. I'm recovering from surgery and had some hours to spare.. and would hate to lose these updates.. especially when this page had been clearly changed by industry.. promoting neuromodulation, etc. etc. Aruaidh (talk) 02:57, 25 September 2010 (UTC)Aruaidh


 * Look at how to format citations, and omit sentences such as "Substantiated claim". RxWatch (talk) 04:55, 25 September 2010 (UTC)


 * My bad. I was using a wikipedia guide that used "substantiated claim" as part of the reference text. I must have misunderstood their format. —Preceding unsigned comment added by Aruaidh (talk • contribs) 18:15, 25 September 2010 (UTC)

Nomenclature Debate Continues
I attempted several edits yesterday to include new research and protocols released during the AUA 2010 annual meeting. The nomenclature debate for IC has been going on for over a decade... and the problem that I have with the text as written is that it assumes that the world is now following the ESSIC name/criteria of Bladder Pain Syndrome. Simply not the case. The problem with the ESSIC criteria is that it excludes patients who have frequency/urgency without pain from a diagnosis. There are comparatively few practitioners in the rest of the world who follow these guidelines. I attended the NIH/NIDDK meeting at which this was discussed and there is, by no means, an international consensus of the ESSIC guidelines. They will never be implemented in the United States as written.

In 2008, when the Japanese Urology community issued their standards, they chose the name "Hypersensitive Bladder Syndrome" to avoid the exclusion of patients without pain and because they felt that sensitivity was a more accurate description of what is happening in the bladder wall. This is quite likely the best article written on IC to date discussing the nomenclature debate. In 2009, the Indian Guidelines were released, revealing that they would be using the term "Interstitial Cystitis/Painful Bladder Syndrome." In 2010, the American Urology Association introduced the AUA Guidelines and they will be using the name "Interstitial Cystitis/Bladder Pain Syndrome" for the foreseeable future in large part because our understanding of IC has changed so dramatically in the past year that what we thought we knew may be completely incorrect. Research now suggests that IC is an afferent gating disorder.. with systemic implications or, at the very least, a neurosensitivity disorder. Thus, if any name has the potential of being used in the future, it would be the Japanese approach. For those who are interested, there are some webcasts from the AUA meeting which discuss the pros and cons of name changes What's in a name: What Happened to Interstitial Cystitis and the new AUA standards.

The other critical development is the new phenotyping methodology which now assesses AND TREATS patients with respect to six specific domains, including the presence of infection pelvic floor muscle tension, the presence of psycho social problems (anxiety, catastrophic thinking), organ specific issues (i.e. Hunner's Ulcers).. etc. etc.. which also blows out of the water the implication that IC is a bladder specific disease.

I propose that we return to using IC or IC/BPS or IC/BPS/HBS... rather than BPS/IC for this discussion. Comments? Interestingly, the website UROTODAY uses IC/PBS/BPS/HBS in their discussions.

I attempted several edits that were reverted yesterday and would appreciate your review of these again. The treatment discussion, in particular, was poorly organized, did not differentiate between oral medications, intravesical instillations, etc. The neuromodulation area was misleading at best given the fact that there is substantial risk, including numerous fatalities when using this methodology. Please check those out and give me feedback. I am recovering from surgery so am still in a painful recovery process.

Jill Osborne - Interstitial Cystitis Network President &amp; Founder (talk) 18:14, 25 September 2010 (UTC) Aruaidh


 * Some comments:
 * Wikipedia follows, it does not lead. Nor is wikipedia a crystal ball, looking forward into the future, or a place to debate nomenclature. Until clarity emerges on naming, the oldest form ("IC") should be used in the article, but the other forms should all be noted and perhaps made into redirecting links.
 * Speculation about theories of etiology, such as gating deficiencies, should be included as theories. I inserted a citation to the theory yesterday, under the "Stress" subsection.
 * Please do not make personal disclosures about your health status here. This is not a forum.
 * I suggest you continue editing the page again, but make changes slowly and piecemeal, over a period of time, so that they can be reviewed by others and modified when necessary. RxWatch (talk) 02:30, 26 September 2010 (UTC)

I think that reference to NRSI and SSRI drug entries could be more generalized. Duloxetine and amitryptaline (and escitalopram) may provide a therapeutic effect in a small subset of cases. eg. this article promotes duloxetine for IC Given that people who read this may be desperately seeking pain relief, and may have not tried all drugs, all should be mentioned as possible treatments with efficacy in a subset of cases. Let the patient pursue the best treatment given their own response. StephenSmith (talk) 06:21, 11 February 2011 (UTC)

A number of issues
This article should be referenced to high quality sources such as review articles rather than to primary research papers and the popular press. Doc James (talk · contribs · email) (if I write on your page reply on mine) 12:08, 5 October 2012 (UTC)
 * Do you have any suggested references to add or to use in place of the research papers currently used as references in the body of this article? TylerDurden8823 (talk) 23:41, 5 October 2012 (UTC)
 * I can help you identify sources if you need help finding them, please message me at my talk page. Forgive me for being critical on the article, but right now I see the sentence "A Harvard University study concluded, 'the impact of interstitial cystitis on quality of life is severe and debilitating' " in the lead. I don't know of a reason to name drop "Harvard" like this (see WP:MEDREV). Tha paper is from 2000 and is a primary research paper. Per WP:MEDDATE, we try to use recent review articles if possible. I see it has been cited by three review articles. The most recent is "Clinical guidelines for interstitial cystitis and hypersensitive bladder syndrome". That would be a good source to rewrite content with. And then we have "A Harvard Medical School guide...", which sounds like further name dropping and it is cited to a teriary source, which is not ideal in this case. A clinical practice guideline is one type of secondary WP:MEDRS and review articles are another. These should be cited for most of the content in a medical article (when they can be located). I came here because I noticed this article was put up for good article review. In my opinion it lacks basic verifiability because it is tagged as having potentially self published material, and in general strays from the guideline of WP:MEDRS, by citing questionable sources such as old primary research. For example, the statement "Neuromodulation can be successful in treating IC/BPS symptoms, including pain" is cited to a 1994 paper. That's not how we write articles, unfortunately. Biosthmors (talk) 20:29, 16 October 2012 (UTC)

DMSO
The DMSO page mentions use for treatment - yet this page lacks any mention. Shirley SW, Stewart BH, Mirelman S.; Stewart; Mirelman (March 1978). "Dimethyl Sulfoxide in Treatment of Inflammatory Genitourinary Disorders". Urology. 11 (3): 215–220. . . — Preceding unsigned comment added by 108.243.106.82 (talk) 16:33, 6 March 2017 (UTC)

Quantify tags
I put quantify after "IC/BPS can result" in the lead because it is vague. Is it 1/1000 or 4/10? Biosthmors (talk) 16:04, 13 December 2012 (UTC)
 * Good question. I'm really not sure to be honest but I can't seem to get a hold of any studies right now that will satisfactorily answer this question. We'll have to wait in the meanwhile until a good review source on quality of life in interstitial cystitis emerges.TylerDurden8823 (talk) 06:39, 5 February 2013 (UTC)

Kegels
My edit on Kegel exercises was reversed, but the text still has essentially the same meaning, except it's unclear, hinting that kegels can help IC. I'm not aware of papers that claim they are helpful. Got any? Ratel (talk) 07:19, 14 July 2015 (UTC)

Link to gluten
The study in question references another study by the same author (see it here ) where the claim is made that IC is linked to gluten somehow with frequency "undetermined". No data is presented in this original study, and no sources for the claim. I see they also linked "ingrown hairs" to gluten, and other unfounded claims. Junk science. Gluten probably IS linked to IC, but this is not proof. Ratel (talk) 01:24, 16 March 2016 (UTC)


 * Dear


 * To support the inclusion of non-celiac gluten sensitivity, I used this paper Ann Nutr Metab. 2015;67 Suppl 2:16-26. doi: 10.1159/000440990. Epub 2015 Nov 26. Gluten Sensitivity. Catassi C1. (Review) (Table 1 - The clinical manifestations of NCGS), which is a medical reliable source. This is a secondary source, PubMed indexed, published in Annals of Nutrition and Metabolism November 2015, which is a peer-reviewed scientific journal, with an impact factor of 2.618, ranked 34/77.


 * The study you cited and you misprize http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4488826/ is not by "the same" author but a group of the most prestigious experts worldwide in celiac diseases and non-celiac gluten sensitivity (Catassi C, Elli L, Bonaz B, Bouma G, Carroccio A, Castillejo G, Cellier C, Cristofori F, de Magistris L, Dolinsek J, Dieterich W, Francavilla R, Hadjivassiliou M, Holtmeier W, Körner U, Leffler DA, Lundin KE, Mazzarella G, Mulder CJ, Pellegrini N, Rostami K, Sanders D, Skodje GI, Schuppan D, Ullrich R, Volta U, Williams M, Zevallos VF, Zopf Y, Fasano A). It was published in Nutrients June 2015 and PubMed indexed . Nutrients is a peer-reviewed scientific journal and have a 2016 impact factor of 3.27, and is ranked 21/77 (as 2015).


 * It's a shame that all these experts and reviewers have not noticed all that "other unfounded claims" that there are in the article, in your opinion.


 * You said "no data, and there are no other studies linking IC to gluten". In Medicine are considered not only studies, also documented cases. And yes, there is some case report, such as this one BMJ. 2012 Nov 30;345:e7982. doi: 10.1136/bmj.e7982. A Patient's Journey. Non-coeliac gluten sensitivity. Rostami K1, Hogg-Kollars S., published in The BMJ 30 November 2012. The BMJ's impact factor is 17.445, ranking it fifth among general medical journals.


 * Wikipedia states: "Some people with IC/BPS have been diagnosed with other conditions such as irritable bowel syndrome (IBS), fibromyalgia, chronic fatigue syndrome, allergies, Sjogren's syndrome". All of these diseases, at least in some cases, are linked to celiac disease or non-celiac gluten sensitivity and improve with a gluten-free diet.      So... why be surprised?


 * Anyway, I agree to withdraw the NCGS of that list and include it apart, with "less weight". And I will add: There is also some evidence of an association with non-celiac gluten sensitivity in some patients.


 * Best regards. --BallenaBlanca (talk) 10:21, 16 March 2016 (UTC)

Yes, I agree that there is "some evidence" of an association of NCGS with chronic pelvic pain (IC and CP/CPPS), but as you have discovered yourself, it all goes back to anecdotal evidence, as in the case report you offer above (who also seems to be the source of all the other "undetermined" maladies, like "ingrown hairs"). I accept your modification, but rather than citing only the review study (Carlo Catassi reviewing his own studies), I'll insert a cite to the case report too. Ratel (talk) 21:54, 16 March 2016 (UTC)

Associated with other disorders
, you removed reference to links to fibromyalgia and IBS. But "For example, epidemiological studies have revealed that IC/BPS is commonly associated with other chronic pain conditions, including fibromyalgia, irritable bowel syndrome and chronic fatigue syndrome." This from a review study, and Pubmed full of other evidence to support. Please re-insert. Ratel (talk) 21:06, 6 October 2016 (UTC)
 * We still say "Many of those affected also have irritable bowel syndrome and fibromyalgia."? Doc James  (talk · contribs · email) 21:28, 6 October 2016 (UTC)
 * And CFS? Ratel (talk) 21:39, 6 October 2016 (UTC)
 * Do we need to list them all in the lead? There are lots of associations. Doc James  (talk · contribs · email) 00:05, 7 October 2016 (UTC)

Covering hyaluronic acid (Cystistat)
I would like to see some coverage of Cystistat. When I first looked at the literature there seemed like a lot of good studies of it - for example Long-term results of intravesical hyaluronan therapy in bladder pain syndrome/interstitial cystitis. (2011) found half in remission after five years which is discussed in Review of intravesical therapies for bladder pain syndrome/interstitial cystitis (2015) but without much in the way of interesting commentary or critique. Apparently Cystistat is approved in many countries (Canada, EU per this) but not the U.S. II  | (t - c) 21:49, 12 February 2017 (UTC)
 * Also on the topic of instillation, sort of, is this study on the effect on pH on pain: no effect. II  | (t - c) 21:57, 12 February 2017 (UTC)

Alternative therapies
Hey, what is the problem with the source added here? II | (t - c) 17:55, 14 February 2017 (UTC)
 * It is an internet based survey (a primary source). The conclusion is "Randomized, placebo-controlled studies are needed to demonstrate which therapies may indeed control IC symptoms". What percentage of people in such a survey say an alt med treatment is useful or not does not mean much. Doc James  (talk · contribs · email) 00:36, 15 February 2017 (UTC)
 * Hmm, I might be able to find a review which summarizes at a high level, although perhaps not for a few months. But to your comment, I think it misses the point a bit: the intent of a medical article is not solely to identify effective treatments. The intent of any article is to inform readers of important content in a neutral manner with reliable sources. It seems quite appropriate and effective, in the sense of writing to help people understand the topic (which should be the goal!), to lead off this section with an overview of number of treatments that people have tried and some basic information about them. Maybe there's a different way to approach that, but this section should start with a very high-level survey. That's not to suggest that these are effective, but as I said in the first sentence, that's not always the point. I also don't think it's a reasonable bar that everything has to be passed through RCTs to be mentioned. These are "alternative treatments", so we wouldn't expect there to be a lot of RCTs. As an aside, I am going to push back - and always will - against the idea that all medical content needs to be in a medical review. I was there in the discussion when MEDRS was promoted (as were you), and that certainly wasn't how it was presented at the time. I doubt it would've become a guideline if it had. Meanwhile, it's not wholly uncommon for non-peer-reviewed articles to be used to directly contradict peer-reviewed sources by long-term editors circling the medical project, such as the discussion over at alkaline diet right now. My hope is that Wikipedia doesn't end up a ghostly place occupied by a handful of people enforcing a byzantine and frankly arbitrary set of rules. It should be open, a bit democratic, and even fun. II  | (t - c) 08:21, 15 February 2017 (UTC)
 * There are lots of great review articles on this topic. A survey is basically testimonials. The conclusion of the paper is really that no evidence exists on the effectiveness of alt med not that half of them "work". Doc James  (talk · contribs · email) 09:01, 15 February 2017 (UTC)
 * I agree with James that an internet-based survey is a low-quality source and should be avoided. I'm confident there are reviews discussing the use of alternative medicine modalities in IC and the level of study these modalities have received. If they haven't gone through high-quality RCTs, then you'd be hard-pressed to say that they're proven to work. Anecdote means very little when stacked against evidence since various biases (cognitive or otherwise) skew our view on such matters. Since this is a medical article, I too will insist that WP:MEDRS-compliant reviews are used for such content. Primary sources such as internet-based surveys are inappropriate (even if you disagree, II). If the information is not yet available, we can wait and improve other sections of the article in the meantime. TylerDurden8823 (talk) 13:40, 15 February 2017 (UTC)
 * By all means, it's not a perfect or even good source source, and I'll admit it's probably a good idea to remove it (as my user page states, "to change your mind and to follow him who sets you right is to be nonetheless the free agent that you were before"). With that said, if the bar for contributing to Wikipedia is to do a complete lit review and identify the best source possible... well, it's no wonder that few will bother.  If you glance at the history of this article, in terms of substantive content work it's basically been two people for the last five years: Doc James and TylerDurden. And probably a similar statement could be made for most medical articles.
 * Also, while I appreciate the calm tone, Tyler, I feel like it kind of talks past my above comment, as if my point was not really understood. Demonstrating some sort of efficacy is not the point. That patients reported half helped could be removed entirely while accomplishing the purpose, perhaps by instead mentioning that "84.2 % had tried complementary therapies and 55 % said that physicians had recommended complementary therapies". Starting with a broad number and survey of a wide number of potential therapies, with a hint of the patient perspective, is the point. With a survey showing patients responses, the nice thing is that it is obviously poor evidence and there is less temptation to single individual therapies out, as compared to a review covering a bunch of low-powered, misleading RCTs ("Why Most Published Research Findings Are False" (2005)). I suppose there may be a difference in perspective: to me, it seems that most of our readers would recognize that a survey isn't good evidence.
 * Anyhow, I dug a bit deeper and found Complementary therapies for bladder pain syndrome: a systematic review. In addition to covering some RCTs (which are rather tricky to analyze), it spends a paragraph on the survey. Not up for dealing with the hassle of trying to predict/figure out what content might be worth adding, though - maybe in a few months.  II  | (t - c) 07:22, 17 February 2017 (UTC)
 * I acknowledge that I've contributed quite a bit to the article; however, I disagree with the assumption that most readers will critique a survey as a low form/unreliable form of evidence. Every day people are bombarded with sensationalist news headlines horribly distorting scientific findings and the vast majority parrot what they hear without being able to critically appraise the evidence. I agree that sorting out the quality of RCTs and studies, in general, can be a herculean task, but it's one that's worth doing so we know what works and what doesn't. I see little value in adding a survey of self-reported claims from IC patients were surveyed and thought X, Y, and Z worked for them. That's anecdote (not evidence) and I disagree that it has a place in an encyclopedic entry in an article about a medical condition (aside from, perhaps, a society & culture section about what patients perceive to work best for them but that's often not consistent with more objective forms of evidence). Millions of people will swear to you that homeopathic products make them feel 100% better but it's still implausible pseudoscientific nonsense. The systematic review might potentially be worth including but it will have to undergo the same scrutiny by the community as all other papers considered for inclusion in the article. I don't know if I would characterize "the bar" as doing a complete literature review but Wikipedia is meant to be an encyclopedia, a tertiary source, built on high-quality/reliable (primarily) secondary sources. I think that's important if this is going to be a well-sourced high-quality article. TylerDurden8823 (talk) 03:28, 18 February 2017 (UTC)

Decent source. Added a summary of it here.

Yes to bring Wikipedia to the next level of quality is going to be hard work. It however is much much less difficult editing WP than trying to publish in a major peer reviewed medical journal. And peer reviewed medical journals have no lack of people interested in writing in them.

I am not convinced that the difficulty of editing Wikipedia is the cause for the flat lining of our editor numbers. Part of the evidence I see for this is what little effect VE had on people editing. VE is much easier to edit with but it did not lead to an increase in editors. Doc James (talk · contribs · email) 09:46, 18 February 2017 (UTC)

Reference
Source of more information:
 * https://www.cdc.gov/ic/index.html
 * Barbara (WVS) ✐ ✉ and Merry Christmas 23:22, 19 December 2017 (UTC)

Could Ketamine be a cause?
Singapore Med J. 2015 Dec; 56(12): 660–665. doi: 10.11622/smedj.2015185 PMCID: PMC4678404 PMID: 26702160 The clinical presentation and diagnosis of ketamine-associated urinary tract dysfunction in Singapore

Jacklyn Yek, MBBS, MRCS,1 Palaniappan Sundaram, MBBS, MRCS,1 Hakan Aydin, MB, Am Bd Pathology,2 Tricia Kuo, MBBS, MRCS,1 and Lay Guat Ng, MBBS, FRCS1 1. Winstock AR, Mitcheson L, Gillatt DA, Cottrell AM. The prevalence and natural history of urinary symptoms among recreational ketamine users. BJU Int. 2012;110:1762–6.

Chu PS, Ma WK, Wong SC, et al. The destruction of the lower urinary tract by ketamine abuse: a new syndrome? BJU Int. 2008;102:1616–22.

Middela S, Pearce I. Ketamine-induced vesicopathy: a literature review. Int J Clin Pract. 2011;65:27–30.

Tsai TH, Cha TL, Lin CM, et al. Ketamine-associated bladder dysfunction. Int J Urol. 2009;16:826–9.

Hanno PM, Burks DA, Clemens JQ, et al. Diagnosis and treatment of interstitial cystitis/bladder pain syndrome, amended 2014. American Urological Association Available at: https://www.auanet.org/education/guidelines/ic-bladder-pain-syndrome.cfm.

Lee CL, Jiang YH, Kuo HC. Increased apoptosis and suburothelial inflammation in patients with ketamine-related cystitis: a comparison with non-ulcerative interstitial cystitis and controls. BJU Int. 2013;112:1156–62.

95.146.100.219 (talk) 16:45, 10 August 2019 (UTC)

Accuracy
I have had IC for 24 years. The information on this page is so wrong I can’t even believe it.

We (my grandmother and mother) all had cystograms which identified the deterioration of the lining of the bladder. That is what IC is. What kind of crack pot wrote this description I can’t imagine. It’s not a ruling out disease. You make it seem like a mental health issue. We live in chronic pain. The best treatment is cystostat which is inserted via catheter. 70.50.99.74 (talk) 19:32, 2 August 2023 (UTC)


 * The current evidence points to most cases of IC being chronic infections missed by lousy tests (much too low sensitivity to refute the overwhelming prior probability of infection, given symptoms). The best current treatment is full-dose narrow-spectrum urinary antibiotics and/or methenamine, taken for long enough.
 * Spidermario (talk) 22:48, 2 August 2023 (UTC)
 * Spidermario (talk) 22:48, 2 August 2023 (UTC)
 * Spidermario (talk) 22:48, 2 August 2023 (UTC)

Correction
IC is not exclusive to females. I am male and have been dealing with it for 5 years. About 2% of sufferers are male. JW0419 (talk) 17:09, 27 March 2024 (UTC)