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  • New Article Seems Very Promising

    Hi All,

    I am a college student with IC who has a mom very active in keeping herself updated about IC research. Just a couple weeks ago my mom found this article that came out in February in the British Journal of Urology. I was surprised no one had commented about it yet so I thought I would post it here.

    The article discusses the cause of IC being leaky bladder epithelium cells, a theory that has been around for a while but this paper takes it to the next level. In addition the author argues that the following conditions are caused by the same phenomenon with varying degrees of severity and location: urethral syndrome, overactive bladder, chronic prostatitis, urethritis, or a type of gynecologic pelvic pain (such as endometriosis, vulvodynia, or some type of vaginitis).

    I am really convinced this is a major factor in IC and was actually brought to tears when reading this article because it gave me hope that if the cause has been found, a cure or at least a really good treatment may only be a few years away.

    Here is the abstract:
    What's known on the subject? and What does the study add? This article reviews entirely new concepts concerning the etiology, presentation and diagnosis of interstitial cystitis. It pulls the information together in a concise fashion that emphasizes there is a radical change taking place in the concepts of what generates bladder symptoms. Primarily this emphasizes that the paradigm for interstitial cysititis and the generation of bladder symptoms is going to change dramatically. The data reviewed shows that the symptoms are caused by a leaky epithelium and subsequent diffusion of potassium into the tissues causing frequency, urgency, pain and incontinence. This is totally different from current concepts. The traditional diagnosis of interstitial cystitis (IC) only recognizes the severe form of the disease. The far more common early and intermittent phases of the disease are not perceived to be part of IC but rather are misdiagnosed as urinary tract infection, urethral syndrome, overactive bladder, chronic prostatitis, urethritis, or a type of gynecologic pelvic pain (such as endometriosis, vulvodynia, or some type of vaginitis). All of these patient groups actually suffer from the same bladder disease. This disease results from a leaky bladder epithelium and subsequent potassium leakage into the bladder interstitium that generates the symptoms of frequency, urgency, pain or incontinence in any combination. Robust scientific data now support this important concept. These data will be reviewed herein. The conclusions derived from these data substantially alter the paradigms for urology and gynecology in the generation of frequency, urgency and pelvic pain. All the above-mentioned syndromes unite into one primary disease process, lower urinary dysfunction epithelium, or LUDE disease, and not the 10 plus syndromes traditionally recognized.

    The full article is fascinating but a bit too long to reprint here. I would love to hear what other people think of this.


  • #2
    Is this the same as a leaking bladder? I had a rectocele repair which was supposed to correct the leak. Please let me know about this.
    <center>
    <a href="http://s1086.photobucket.com/albums/j441/linda5552/?action=view&amp;current=Picture005.jpg" target="_blank"><img src="http://i1086.photobucket.com/albums/j441/linda5552/th_Picture005.jpg" border="0" alt="Photobucket" ></a>
    </center>

    Comment


    • #3
      Very interesting, I'd like to read it or print it and give it to my doc if it wouldn't insult him.... Will you post the link or website?
      Did they mention if its something that can be fixed?
      Cindi


      Gelnique for frequency/urgency - works great
      Macrobid after sex
      Prilosec, continuous birth control pills
      synthroid .088mg, mucinex-d, restasis

      Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

      Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

      IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
      AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
      AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
      Great treatment flowchart on page 19 of the pdf

      Comment


      • #4
        Linda May as far as I can understand it is not the same thing as a leaking bladder. It has to do more with the individual cells not producing a protective layer and therefore potassium and other solutes can "leak" into nerve and muscle cells thereby causing all the symptoms. These nerve and muscles are usually protected by the epithelium cells but in people with this disease the cells do not work properly.

        Cmclien, unfortunately the article is not regularly available. My mom found the abstract and I had to track the article down myself through the interlibrary loan function at my university. My mom found the abstract at urotoday.com if it helps and the article is from the BJU.

        Also the article was really only concerned with the root cause of these diseases (or if you follow the argument this one disease) and not with any treatment possibilities. If I understand the world of medicine, the way it seems to work is first comes the research on the actual pathology of the disease and only after does a cure or good treatment plan get developed. If this is accepted as the pathology of the disease it can years and years for that to lead to cure.

        I am only 21 and to see that there is a possibility that the pathology of my disease has been figured out gives me a lot of hope that I will not have to live like this for the next seventy years.

        Sorry for the long reply.

        Comment


        • #5
          Also the article title is "The Role Of A Leaky Epithelium And Potassium In The Generation Of Bladder Symptoms In Interstitial Cystitis/Overactive Bladder, Urethral Syndrome, Prostatitis And Gynaecological Chronic Pelvic Pain" and the author is C. Loweel Parsons from the UC San Diego Medical Center, Department of Surgery/Urology.

          Sorry I thought I put that up earlier.

          Comment


          • #6
            I tried to get to it but can only get to the abstract. I have sent jill a message to see if she can get it and post it here on the website.
            This is the most promising thing I've ever seen. If its all one disease and points to that urinary dysfunction epithelium like it says then they could actually work on a medicine to re-build that, is that what elmiron does? I think alot more effort would go into solving this problem if like he says its not 10 diseases but varying severity of the same disease.
            Cindi


            Gelnique for frequency/urgency - works great
            Macrobid after sex
            Prilosec, continuous birth control pills
            synthroid .088mg, mucinex-d, restasis

            Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

            Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

            IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
            AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
            AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
            Great treatment flowchart on page 19 of the pdf

            Comment


            • #7
              If you go to the IC network home page and do a search for Dr Parsons on the network you will find some transcripts from an interview he did with Jill and some other information from him. I didn't look closely but you might even find some info on this as well.
              Last edited by sailawaygrl; 02-21-2011, 02:42 PM. Reason: Deleted something after better understanding
              Link to the patient information, everything from What is IC? to Disability
              http://www.ic-network.com/patientlinks.html

              American Urological Association Clinical Guideline
              Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
              http://www.auanet.org/content/guidel...ent_ic-bps.pdf

              Comment


              • #8
                I just read the abstract, I understand that he is saying that with this IC can be detected much earlier? I am a bit confused, I will ask my Dr about it next visit. He is good at helping me understand, and I ALWAYS ask about new research.
                Link to the patient information, everything from What is IC? to Disability
                http://www.ic-network.com/patientlinks.html

                American Urological Association Clinical Guideline
                Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
                http://www.auanet.org/content/guidel...ent_ic-bps.pdf

                Comment


                • #9
                  The date for this article was February 2011 as I said in my original post. Hopefully Jill can post the full article because it makes it easier to understand than the abstract.
                  Last edited by plmokn; 02-21-2011, 02:49 PM.

                  Comment


                  • #10
                    I see that now, thank you.
                    Link to the patient information, everything from What is IC? to Disability
                    http://www.ic-network.com/patientlinks.html

                    American Urological Association Clinical Guideline
                    Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
                    http://www.auanet.org/content/guidel...ent_ic-bps.pdf

                    Comment


                    • #11
                      I guess the reason it excites me is since according to him if it is all encompassing (all these syndromes that he mentions) then more research will be aimed at solving it for all of us. It kinda makes sense when you think about it. Maybe those with mild IC have more of a epithelium layer then those with severe pain etc. It doesn't explain why some folks feel it in the urethra, vulvodynia, endometriosis etc. but this is only the abstract. It also explains why diet makes a difference as some of the more acidic foods get through that broken down or thin layer. I did at least print out this part to show my doctor. I am hoping he saw the article in December. I don't know him very well but he seems very open minded but he did say he thought OAB and IC were two different syndromes/diseases.
                      Cindi


                      Gelnique for frequency/urgency - works great
                      Macrobid after sex
                      Prilosec, continuous birth control pills
                      synthroid .088mg, mucinex-d, restasis

                      Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

                      Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

                      IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
                      AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
                      AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
                      Great treatment flowchart on page 19 of the pdf

                      Comment


                      • #12
                        One of those sites said you can get a 24 hour membership to print the article. Not sure how much but it is an option.

                        Maybe Jill will post the article. Hopefully.
                        Link to the patient information, everything from What is IC? to Disability
                        http://www.ic-network.com/patientlinks.html

                        American Urological Association Clinical Guideline
                        Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
                        http://www.auanet.org/content/guidel...ent_ic-bps.pdf

                        Comment


                        • #13
                          Here's an older publication from 2002 basically saying the same thing. The thing to highlight here is that they recommend the Potassium Test for a diagnosis. I'm not sure where you guys are with that method of diagnosing, but my doctor thinks the Potassium Test is outdated and basically a form of torture if a patient presents with the various IC symptoms.

                          Interstitial Cystitis and Lower Urinary Tract Symptoms in Males and Females—The Combined Role of Potassium and Epithelial Dysfunction

                          The author of this article suggests that the majority of IC can be kept under control with a three-pronged approach.

                          Not sure how this older pub differs from the abstract the OP is talking about but I'd be curious to see. Also, the fact that this very subject was in a journal many years ago doesn't give me a ton of hope that this is a major breakthrough or that funding will be pouring in for more studies. Sorry to be such a debbie downer.

                          Btw, I found this article by googling "lude disease"
                          Mom to two littles (remissions while pregnant/breastfeeding)
                          Sufferer since mid-90s
                          Finally dx'd properly much later

                          Comment


                          • #14
                            Mamaz They don't recommend the potassium test any more (the AUA), here is something I ran across and posted yesterday regarding this:

                            http://www.ic-network.com/forum/show...961#post569961

                            But your right its a little disheartening if thats been around since 2002. Maybe there is more to back it up now....
                            Cindi


                            Gelnique for frequency/urgency - works great
                            Macrobid after sex
                            Prilosec, continuous birth control pills
                            synthroid .088mg, mucinex-d, restasis

                            Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

                            Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

                            IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
                            AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
                            AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
                            Great treatment flowchart on page 19 of the pdf

                            Comment


                            • #15
                              Originally posted by cmclien View Post
                              Mamaz They don't recommend the potassium test any more (the AUA), here is something I ran across and posted yesterday regarding this:

                              http://www.ic-network.com/forum/show...961#post569961

                              But your right its a little disheartening if thats been around since 2002. Maybe there is more to back it up now....
                              Whoa. Holy irony.
                              Let's just say I have a very bad taste in my mouth about Hanno.
                              Mom to two littles (remissions while pregnant/breastfeeding)
                              Sufferer since mid-90s
                              Finally dx'd properly much later

                              Comment

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