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  • Too share or not to share

    I sometime think I should not post. I know so many of you have such incredible pain, not only from IC but also from lack of support from family and friends. There are those that can’t even find a physician that has experience or knowledge of IC. You have been treated insensitively and made to feel you are “mental”. You have lost jobs or had to stop work, or your marriages have suffered. It just seems the quality of your life has been sacrificed to IC.

    I just worry that my posts may be discouraging rather than encouraging. My IC has been managed so successfully that I am afraid I will discount your feeling. It’s sort of like chocolate, a little is all you need.. Too much and it causes a bunch of trouble.

    My purpose is not to discourage but to encourage. Poster seem to come and go quickly. I am not sure if it is because they have found success or if it is because they feel defeated.

    I can empathize with many of your feelings. But if sharing my success is causing defeated attitudes I am defeating my purpose. I know that my solution is the one that works for me but it is not the one that works for everyone. Someone would be really rich if that was the case.

    Please let me know your feelings.
    TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
    My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

    Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
    Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
    I post to encourage and offer total support for rescue instillations.
    Find me on facebook: L. Clark Thomas
    Louann

  • #2
    Naw, keep sharing. Everyone has good and bad in this I think. Some will be discouraged by what any of us post about but many others will be given hope. I think some people just post for a while and move on that is all. Maybe some have gotten better or maybe they found a different kind of support group. Keep on posting.

    Comment


    • #3
      Sharing our successes is very important. It gives others hope that they will also find effective treatment options.

      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


      • #4
        I agree with the others.. Keep posting if you are having good days with IC, for me it would be nice to hear..Alot of us post on our bad days and how painful it is.. I for one would love to hear more positive stories, it would give us hope..So please keep posting
        Hugs
        Ronda

        ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


        Link to Patient Handbook:
        http://www.ic-network.com/handbook/

        Diet Reference Sheet:
        http://www.ic-network.com/diet/icndi...tsheet0909.pdf

        Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

        Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

        Meds I have Tried:
        Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
        Lexapro< Bad reaction to this med!
        Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

        Dx With IC in Nov 2006 with Hydro/Cysto
        Hydro/Cysto Caused Bladder to Rupture.

        Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



        ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

        Comment


        • #5
          Please post whenever you feel like it! There are lots of depressing stories here, and lots of hopeful ones, but both have their place. If I didnt read the depressing ones, I wouldnt want to post on my terrible days. But, since others do, it makes me feel like others will understand. But, the success stories are important to, b/c then it gives us hope that we will find something that will help us too. One person's success story (or even several) arent enough, b/c no group of ICers responds to the same things. What worked for you might not work for 20 others, but then one day, the 21st will come along, read your posts and try it, and BAM, they will have finally found something that works for them too!

          Every story and every post is important, and that includes yours!

          Hugs,
          Amy

          Comment


          • #6
            Please keep sharing. I know I need to hear there are those who get better and are leading normal lives. If we don't have hope IC will over take us all together. I've gone through my fare share of depression from IC.....so please keep posting and tell what you are doing and how you are keeping healthy. Roxie

            Double Spinal Cord Stimulator surgery 8/09
            Unsuccessful MiniArc sling surgery 12/07
            Dx'd Hypothyroid
            Dx'd Chronic Axonal Neuropathy & Myopathy
            June 2007
            Dx'd IC May 2006 (after suffering for 25+ yrs!)
            First Cysto 1979
            First Hydro 1981 (Many treatments since then!)
            Collagin"Durasphere" injections for urethra
            Gall bladder surgery Aug. 2004
            Gastric Bypass Dec. 2004
            Dx'd: Barrett's Esphogus July 2004
            Dx'd: Vaginal Atrophy 2005
            Bladder surgery 2000
            Dx'd: IBS 2000
            Hysterectomy (fibroids) 1999
            Laminectomy 1989
            Dx'd: Degerative Disk Disorder 1989

            For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
            I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

            Comment


            • #7
              Hearing success stories gives me hope! Please continue to share, people who continue to post even when they are in remission are such great support for us. THanks!

              Erika
              IC diagnosed officially via cysto/urodynamics 1/26/07

              Grade II Endometriosis diagnosed via lap 12/11/07

              "Fall down seven times, Stand up eight."

              "Life is a tragedy for those who feel and a comedy for those who think."

              Current Treatments:
              Interstim Since 5/25/07!
              Birth Control

              Comment


              • #8
                Agree with all the above posts!
                Kadi

                -------------------------------------------------------------
                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.
                ------------------------------------------------------


                New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
                Source - Pinterest
                "


                Current treatments:
                -IC diet
                -Elavil 50mg at night
                -Continuous use birth control pills (4-5 periods/year)
                -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
                -Pyridium if needed,
                -Pain medicine at bedtime daily, as needed during the day several times per week
                -Antibiotic when doing an instillation to prevent UTI
                -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
                -Dye Free Benadryl 50 mg at bedtime
                -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
                -Managing stress= VERY important!
                -Fur therapy: Hugging the cat!

                Comment


                • #9
                  Please, don't stop posting! Newbies really need to see success stories, or else they start thinking no one ever gets any better. I can promise you I have never, ever felt bad after reading any of your posts.

                  I think we need more people on the ICN that are willing to stick around after they feel better. I know that I have very, very mild IC symptoms the vast majority of the time now. And I am glad to tell people that, because it means that I survived some of the worst my IC had to throw at me, and didn't give up. You're not discouraging, you're a survivor. You're proof that not everyone with IC is doomed to a life of pain. Please, don't stop posting.

                  Chronic conditions: IC, bipolar disorder, Lown-Ganong-Levine syndrome, Raynaud's disease, bile reflux, scoliosis
                  Current IC treatments: menstrual suppression
                  Daily treatments for other conditions: Neurontin, Zyprexa, Cymbalta, Modafinil
                  As-needed treatments for other conditions: Klonopin, Ambien

                  Comment


                  • #10
                    What they ^ said. Stay with us...We all need to hear when things are good so we can rejoice with you and when things are not so good so we can lend our support.
                    Sharon

                    Shopping??? Did someone mention shopping? I'll get my hat... ;-)

                    Where I can be found most days.



                    Link to the ICN Patient Handbook:
                    http://www.ic-network.com/handbook/

                    Link to the IC Diet:
                    http://www.ic-network.com/diet/


                    IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                    Comment


                    • #11
                      I had the same dilemma early on when I was feeling good. I worried that some people might think I was bragging about feeling good or shoving it in their faces.

                      I know that the one thing that kept ME going when my symptoms were so bad and I felt SO overwhelmed were reading the postings from people who felt good and had found relief. It was like a light at the end of what felt like a very long and very dark tunnel. I needed those posts desperately.

                      I stay b/c of that. I also stay b/c I promised myself during the time when I felt so awful that if I ever felt better that I would not leave. I would GIVE BACK to the ICN what was given to me for free. That is why I have stayed over the years and why I think it's a very good thing that you have stayed, too. It's that whole "pay it forward" thingy.
                      Kim

                      Diagnosed August 2001

                      Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


                      Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

                      I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

                      *****************************

                      “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

                      “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

                      Comment


                      • #12
                        Now I know what I needed to know. My IC was diagnosed literally before I knew I had it. It's not like my knee problems...pain I have lived with since I was 18 (but thanks to TKA and 4 months I can't believe the difference!).. I knew hearing positive stories with knees were encouraging to me. I thought it would be the same for IC but I just wanted to check.
                        TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
                        My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

                        Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
                        Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
                        I post to encourage and offer total support for rescue instillations.
                        Find me on facebook: L. Clark Thomas
                        Louann

                        Comment


                        • #13
                          i def agree please keep sharing it gives us all hope!!




                          Judge me and I'll prove you wrong!!


                          http://www.babiesonline.com/babies/a/alexisriley

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