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  • #1

    flare

    I haven't been on the boards for such a long time. I was doing so well for the past six months. I could eat anything that I wanted except for tomatoes and soft drinks. I didn't have any pain at all so I went off the elmiron due to thinking it was causing stomach problems. Well now I am hurting and burning in my urethra. I feel like I am having so much pressure on my urethra. I have been peeing constantly. I went to the doctor, but no infection. They gave me cipro anyway and gave me some kind of overactive bladder pills. I did a treatment, but they are not working. (lidocane, sodium bicarb, and heparin. The only thing I have been eating that I usually don't eat is cheese and vanilla ice cream. Could cheese cause problems? It is just american cheese. I feel like it is PFD, but nothing is helping. Any suggestions?
    thanks,
    Maryann
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    • #2
      How long ago did you stop elmiron? Most people who are helped by it do keep taking it, sometimes at reduced dosage. It can take a while for symptoms to return after you stop taking it. Have you tried emptying the elmiron tablet into water (discard the empty capsule) and taking it that way --- some people find it's the capsule itself that is the problem.

      I think it would be a good idea to get back on the IC diet as well.

      I hope you feel better soon.

      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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        • #3
          Hi,Maryann ~
          I'm sorry you're back into a painful cycle...I don't have any experience with Elmiron. I understand urethral pressure as that is one of my main symptoms. Have you been able to try Pyridium? It makes me sick to my stomach unless I eat something first, but seems to ease up some of that spasm type pain when I "go". I also understand eating just about anything you want. I'm in the same situation as you, enjoyed eating many of the "forbiddens" but slowly those horrible symptoms have crept back into my life.....even the frequency at night is bothersome again. Also, my trusted friend, my rice bag heated in the micro works wonders. It seems to relax down there enough that I even fall asleep.

          The "hope" is that you and I both had relief at some point so we just have to get back to our routine that WORKS. I've also been contemplating instills again, but first want to try the Pyridium. My doc has given me an Rx for 3xDay for a month to keep on hand....I've done that in the past due to the tearful agony but am now just trying as needed to see if my IC diet will get me out of this cycle. So far, I can feel some relief, but pressure returns.

          I'm really terrible at being able to "pinpoint" the cause of my problems so I don't have an answer about the cheese. I have the most success with the "strict" IC diet. I would think almost anything can cause this beast to rear it's ugly head however.

          I'm sure you'll get things under control. In the meantime, take good care of yourself and truly watch your diet. You must have been doing something very RIGHT to have felt so good for six months.

          Blessings,
          Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found answers...so can you...keep the hope.

          11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
          8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
          8/2010 Surg gallbladder
          TREATMENTS (updated 4/15)
          IC Diet since 8/2009 (Able to vary 4/15)
          Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
          Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
          Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
          *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
          Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
          PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret

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            • #4
              American cheese does often have citric acid in it and colorants, so you might stop that for awhile and see if it helps. Sometimes I can get away with a slice on a burger, but not much more than that. And as Donna suggested, if you had good results on Elmiron, there may be another solution to the nausea than stopping it.

              Wishing you relief soon,
              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!

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                • #5
                  Thanks everyone for the suggestions. I really appreciate it!

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