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  • #16
    Originally posted by maryla View Post
    Lynn,

    .

    My bladder pain does not exist any longer. right now I'm dealing with other health issues.
    Is that because of the naltrexone ??

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    • #17
      Originally posted by mar60 View Post
      Is that because of the naltrexone ??
      Mar60,

      No I had my bladder removed. I would like to start the LND for other heath issues. However, none of my drs will prescribe. I'm searching into an alternative like Suzanne suggested.

      Is the LDN helping with your bladder?? Pray so...
      Hugs and blessings,
      MARY


      Serenity isn't freedom from the storm.....it's peace within the storm.....I had my sick bladder removed Jan 7th 2010.....Even though I had many complications.......I would do it again in a moment.....I have no regrets......Sunflowers in memory of my sister who passed March 14th 2010......they were her favorite....

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      • #18
        Lynn, glad to hear you got some relieve after you're bladder surgery and hope you continue on the road to good health. I have just one question though. When the took your bladder out did they examine it with a fine tooth comb, dissect it backwards and forwards, inside and out? Did they check for any signs of bacteria/viruses/fungi/yeast demons and monsters????
        I guess that's two questions sorry

        Scott

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        • #19
          Scott, I don't know about how things are now, but usually when they remove organs, unless there is a reason they do not do such an extensive dissection of the organ, at least that is how it was when I had my bladder removed. I suppose you one could request it to be done but I would also think they might charge more for doing the tests.

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          • #20
            I would like to think, and I appologize for my sarcasm but I would like to think that this organ that has caused so much pain for so many people and ruined so many lives that their are competent researchers out there that are jumping at the chance to examine these extracted bladders for a clue to this disease but.....

            Maybe there is no hope.



            I've never been a conspiracy theorist but other than that I see no other answer than sheer stupidity and incompetence.

            Comment


            • #21
              I am sure there are researchers out there wanting to examine bladders that have been removed, but it is not as simple as you think to acquire them. I understand your frustration, but I respectfully disagree that it has to do with stupidity or incompetence. I feel it has more to do with red tape and lack of communication.
              When other organs are removed they are also not usually dissected and examined inside out, and tested for bacterias, fungus, etc. unless the doctor orders it. If you or some one you are close to is about to have the surgery, then they should take steps to request it and possibly have it done at teaching hospital that is also doing IC research. I think as with many things, what it boils down to in the end is money.

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              • #22
                I agree that "these" removed bladders should be researched. How else are we going to find a possible cure - if everything is just speculation? I would seriously like to leave my bladder to science (if I die with it in), but don't know how to go about this and if anyone is truly really looking at them anyway. I would leave my whole body to science if I thought it could help find a cure so no one else would ever have to endure it. Doctors look at me like I'm crazy when I say I would rather have cancer (but not IC and cancer). You get better or you die. You don't live in constant torment of pain and suffering like this. Also, you can eat. I can hardly eat anything. It is my birthday today and I can't have cake or anything else except the usual. I am gluten intollerant, dairy intollerant and seriously can't eat more than about 7 foods literally without having major pain (bladder or intestinal). I am now having joint pain as well as other issues. I was VERY healthy (I had NONE of this) until I developed IC after two (known) infections following a hysterectomy. It seems the smartest thing would be to go to the source of the issue for more answers.
                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.

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                • #23
                  Hippocrates had described several types of cancers as early as 460 BC. He did this by examining the tissues of affected individuals. That's where the name cancer, greek for crablike comes from.

                  If removed bladders from people that have suffered from IC for many years are simply being thrown away in 2011....I'm sorry but that's pathetic, at best


                  Scott

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                  • #24
                    Happy B-day Teresa!

                    On the joint pain...Don't know if you are on antibiotics but almost every antibiotic I've tried gives me joint pain. Cipro and Macrobid being the worst. After a weeks worth of Macrobid it took three months for the pain to go away in my hips and knees.

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                    • #25
                      Thanks, Scott for the bday wish. I am only on Klonapin .5mg and Diluadid extended release pain med right now. Although, I have taken Macrobid serveral months ago for blood in my urine (more blood than urine) - but the culture came back saying it was free of bacteria. My blood did go away, though.

                      I agree with you, although it seems our small opinions don't count in the grand world of medicine and IC. There is NO question that ic bladders should be researched. I know they take biopsies in some areas of the country and keep these in research banks. But, an entire bladder inside and out should be studied. Especially, in cases like mine and others who have severe IC - maybe there would be more clues.

                      I didn't know that information about cancer. Thanks for sharing.
                      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


                      • #26
                        Happy Birthday Teresa

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                        • #27
                          Scott, my advice for you is to channel your anger and frustration and find out who is doing research and question them directly.

                          Comment


                          • #28
                            Teresa, if you want to leave your body or parts of it for medical research, contact the nearest medical school or teaching hospital. Hopefully they will be able to give you the information on how to do it. I know Dartmouth college/hospital has in the past had people donate their bodies to them for such purposes.

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                            • #29
                              I still have my bladder so I rarely post much here. However, just to clarify --- I did spend 25 years working in a major hospital and I absolutely assure you that no piece of tissue is ever removed without its being thoroughly examined.

                              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

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                              • #30
                                Judith,
                                Thanks for the bday wish and the information of where to leave your body for medical purposes. I did not know this. Another question, I just talked to a Urologist here in Hershey, PA about bladder removal. They don't remove the bladder, but leave it in and divert the urine. What is the advantage or disadvantage to leaving your bladder in?
                                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

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