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  • Beating a dead horse

    I've had IC for 4 yrs and so far its ruined my life. I keep reading the same theories over and over again about PFD and stupid medications that may treat some of the symptoms but nothing is aimed at the actual cause.

    Has anybody considered that this may be a virus of some sort. Has anybody taken any general antiviral medication and see what happens? Someone that knows what they are talking about please tell me that researchers are looking into this.

    I read about all the years of supposed research on this disease and I read about all the clueless answers and one word comes to mind.....

    *********
    Last edited by ICNDonna; 01-24-2011, 05:55 PM.

  • #2
    There is research going on every day to try to find a cause for interstitial cystitis. It's my opinion that there may be more than one cause --- we seem to have so many different theories about what specifically causes it. In my case, I suspect I already had the IC, but it didn't rear its ugly head until I had the trauma of a major abdominal surgery.

    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment


    • #3
      I know I was living pretty normally until I had a hysterectomy. I now have IBS, arm, back, shoulder, chest pain (no heart issue according the EKG's) neck pain, acid reflux and a hernia. I get rashes sometimes, bruising, and I became totally gluten intollerant and lactose intollerant. Just a year before this I was fine - running 2 miles a day and eating anything I want. IC has changed my body in more ways than constant bladder pain, urgency and frequency. I do think mine may be some kind of undiscovered bacteria or virus. Who knows.

      I wish that we would see more studies and research too. I talked to one of the research nurses I had worked with in a study and ask her if they had anything else going on. She told me they are not doing any studies in the IC area right now. That really bothered me because I really feel like this CAN be cured if people would pay more attention to it and have more funding put toward research.
      Teresa

      We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

      Comment


      • #4
        Every time I see my Dr I ask if there is anything new they are working on. He is involved in research studies. Last he told me they are working on growing a bladder. According to him there are several different thoughts on what causes IC. I know some believe it is an autoimmune disease. I tend to think that is what it is also. There are people working on IC, unfortunately IC isn't a disease that gets all the press. I would guess that the other diseases that do get so much attention took a long time to get there too. We all need to work more at trying to get the message out there about IC and the other conditions that typically accompany and IC diagnosis. Educating Dr's is probably most important right now, I think. That way more people would be correctly diagnosed. Another thing we can all do is right letters to our congressional leaders, at the state and national level.

        The squeaky wheel gets the oil! We need to make some noise!
        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


        • #5
          I'm a man so I haven't had any hysterectomies or any other surgeries for that matter. Just started having symptoms at 36 after a particularly stressful time in my life. Maybe that time caused my immune system to weaken which allows a virus such as epstein barr to become active again. This virus may be able to "hide out" in tissues surrounding the bladder. Who knows damnit! Doctors step it up!

          Comment


          • #6
            Shannon
            My hub Bob is the one with IC. He started having symptoms when he was in his mid 40s (he just turned 55). Started with urinary retention and had to self cath from time to time. We worked in the medical field, so he thought he would self diagnose and never saw a doc. Figured it was just normal guy aging, enlarged prostate. We sold our business and moved to Maine, he was actually okay for a while, still with frequency though. He was always in the bathroom. Think he always had IBS too. He went through an extreme bout of depression in 2008.
            That seemed to be the turning point, and his symptoms became quite bad as far as frequency, urgency. We finally saw a uro and he diagnosed a severely enlarged prostate, did surgery, removed 1/3 . His symptoms became worse. The uro said "didn't think that was going to help you" and proceeded to scope him in office (saw his hamburger bladder on the screen) and do the PST and said "yup, you got it bad."
            After that the pain started. We had tried every med out there, home instills, Elmiron, etc. Nothing relieved the pain. Went back to uro who had been to a conference and they were pushing the Interstim. Basically unless we wanted to do that, he dismissed us. Finally his NP prescribed pain meds, which saved him. He was ready to give up again. It gave him a new life. Then he had to have umbilical hernia surgery, and the flares started and never stopped.
            Theories abound. Did all that trauma make things worse? Most likely, but where did it come from to begin with? And you are right, it is extremely frustrating, but we have to remember there are a LOT of unexplained diseases out there that get a lot more press and attention. And of course they are going to focus on things that affect children first, and then the more "famous" diseases like Lou Gehrigs, cancers, etc. Let's face it, IC is near the bottom of the heap. But as more and more are diagnosed with it, and with more educated docs maybe we will move up the ladder. All we need is a few famous people to get diagnosed with it (not that we would wish that on anyone) and that will be that.
            Don't get discouraged. There is research going on. And the urologist conventions always have seminars, etc about IC (wonder if any attend) If you can participate in any online surveys or if there is a study going on in your area, please do. Then at least you feel like you are doing your part.
            Hang in there, these things take time, we can only hope our children's children will never have to suffer from this ugly thing. Take care, stay positive. There are a hundred theories, so it just takes a while to weed through them and rule things out and rule things in. Jill, wife of Bob
            Last edited by ICNDonna; 01-25-2011, 04:47 AM.

            Comment


            • #7
              I didn't have any trouble until i was pregnant. my tilted uterus got worse with the leaning backward, and i was later diagnosed with ic. i couldn't tell if my ic treatment was working or not because of the uterus. my doc sewed it back into place, and after it tilted again and pulled out of its stitches, she did a partial hysterectomy. that was helpful because since the pain of a severely tilted uterus yanking on the ligaments holding it up was gone, i could see what was helping the ic.

              my mom is facing a possible diagnosis of ic. she's had crappy health for a while (cirrohsis of liver, diabetes, high blood pressure, high cholesterol, ibs, very low white blood cell count, etc), so it makes sense that some type of physical trauma brings it on. the researchers just need to figure out why.


              Live until you die.....don't let IC control your life. Rock your world and as my heroine says, "fiddle dee dee, tomorrow is another day!"

              Comment


              • #8
                sailawaygrl,
                Do you see Dr. Evan? I couldn't remember past posts. I have heard that he is one of the best. All his patients seem to be very happy with him.

                My dad told me that a guy at his work had bladder surgery and they put in a pigs bladder. I had never heard of this before. I thought maybe my dad had been mistaken. Has anyone else heard of this?
                Teresa

                We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

                Comment


                • #9
                  I haven't heard of a pig bladder, but my husband has a pig aortic valve.

                  Donna
                  Stay safe


                  Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                  Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                  Have you checked the ICN Shop?
                  Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                  Patient Help: http://www.ic-network.com/patientlinks.html

                  Sub-types https://www.ic-network.com/five-pote...markably-well/

                  Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                  AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                  I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                  [3MG]

                  Anyone who says something is foolproof hasn't met a determined fool

                  Comment


                  • #10
                    Oh, my gosh, well I guess it's possible then.
                    Teresa

                    We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

                    Comment


                    • #11
                      It is frustrating

                      Shannon,
                      I agree, it is totally frustrating. My rheumatologist thinks it is autoimmune as well. I have hashimotos thyroid disease, a diagnosis of sjogrens - though not sure about that one. I have gerd, had IBS for years which is now for some reason quiet, still have the C part of it but really not much pain.
                      The REALLY interesting thing was when my rheumatologist put me on plaquenil my bladder symptoms totally went away. After 3 weeks I developed an allergic reaction to the meds and had to stop and the IC symptoms came back. It effectively halts autoimmune disease to some extent. Based on that and others who had the same experience I wonder why they don't treat IC with plaquenil or at least study it to see what kind of success rate they might have.

                      Originally posted by Snowden1 View Post
                      I know I was living pretty normally until I had a hysterectomy. I now have IBS, arm, back, shoulder, chest pain (no heart issue according the EKG's) neck pain, acid reflux and a hernia. I get rashes sometimes, bruising, and I became totally gluten intollerant and lactose intollerant.
                      Hey Snowden1 - have you been tested for sjogrens and/or SLE? Both of those conditions will give all the symptoms you are mentioning.
                      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
                        Teresa,
                        I do see Dr Evans and you couldn't make me stop seeing him! He is great. Really knows his stuff and treats not just your IC but pays attention to all the other problems we have. I drive about an hour to see him, but even if I move, I will come back to see him.

                        Sandra
                        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
                          Sandra,
                          Oh, I thought you were one of those lucky ones that saw Dr. E.

                          Cindi,
                          What are those things you listed to be tested for?
                          Teresa

                          We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

                          Comment


                          • #14
                            Teresa,
                            They are both autoimmune diseases. People with sjogrens and/or lupus often have alot of pain, sjogrens especially can give muscle/joint/chest pain. Most people just think of sjogrens as a disease that causes dry eyes and mouth but it can cause many other symptoms and not always those. They are often screened by a simple blood test that your pcp can do but a rheumatologist is the better one to see about these as the blood tests are not the only factors to consider.
                            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
                              I would hope to see an answer to this in my lifetime, but I don't expect it.

                              I got ITP when I was 6 years old. Autoimmune blood disorder. May be genetic -they don't know why it happens.

                              I got MS last year (38 yo). Another autoimmune disorder. They don't know what triggers the MS either.

                              I got IC last year (38 yo). A 3rd autoimmune disorder that they don't know why it happens.

                              It's the story of my life - I'd really like to find out so that I know if I need to worry about my boys or not, or if there are extra precautions or tests they should have, etc.
                              Colleen

                              * ITP - autoimmune blood disorder - spleen removed 1978 and in remission since
                              * MS- diagnosed Jan-2010
                              * IC - confirmed by cysto and hydro Nov-2010 - currently taking no medication
                              * possible adenomyosis - suspected by urogyno May-2010
                              * low Vitamin D levels - taking 2000 IU daily
                              * sleep issues - 1/2 alprazolam

                              Comment

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