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  • #1

    Is this pain normal?

    I have not yet been officially diagnosed with ic. I'm going back to my urologist Thursday. Some days I feel pretty good, and others, I'm suffering. I haven't been able to tell how much diet is or is not affecting me. I was originally having just pressure and urgency. Then, it changed to more of an uncomfortable burn at my urethra. Now for the past week, it's been a pin point pain very low on the right side. I can't tell if it's my bladder or my urethra. That pain will come and go, but I always get the with the pain.
    I am scared to go back to the urologist because I don't want him hurting me down there?

    Does anyone else have pain like this?
    Jane
    Diagnosed 1/7/14 via cysto/hydro

    Current Treatment:
    10 mg amitriptyline, DH Aloe Vera

    Used During Flares:
    Uribel, extra DH Aloe Vera, Klonopin and Tramadol (as needed)

    Practicing bladder training and stress control (hot baths, pelvic stretching)
    Recently tried PT, do not appear to have PFD

    Things that have not helped in the past:
    Oxybutynin, Vesicare, Pyridium, Myrbetriq, Vagifem

    Also have migraines and IBS
    Tags: None
  • #2
    Hi

    Your symptoms sound exactly like mine. The diet helped a lot with the urethral burning but I do sometimes get a sharp stabbing pain in the urethra too. The IC specialist explained it as referred pain from the bladder. I sincerely hope you are feeling better!

    Suzi

    Comment

    • #3
      Thx and more questions

      Thx Suzi, I was wondering if you could answer a few questions for me. First, we're you officially diagnosed and if so, how? Also, do you follow the diet strictly? I can't figure out if it's helping or not. Do you take any meds for your ic?

      Thx again for your help,
      Jane
      Jane
      Diagnosed 1/7/14 via cysto/hydro

      Current Treatment:
      10 mg amitriptyline, DH Aloe Vera

      Used During Flares:
      Uribel, extra DH Aloe Vera, Klonopin and Tramadol (as needed)

      Practicing bladder training and stress control (hot baths, pelvic stretching)
      Recently tried PT, do not appear to have PFD

      Things that have not helped in the past:
      Oxybutynin, Vesicare, Pyridium, Myrbetriq, Vagifem

      Also have migraines and IBS

      Comment

      • #4
        Hi,

        I was diagnosed on Friday by cystoscopy(to rule out cancer) and then on the basis of my symptoms alone. I saw an IC specialist. He tried a rescue instill of sodium bicarb, heparin and lidocaine. Caused such urethral discomfort during procedure he recommended not doing it again so as not to aggravate the nerves any further.

        I am on a very strict IC diet and have lost an extreme amount of weight. It definitely does help, it seems to have taken care of the urethral burning I was experiencing. I have been on it for almost 4 weeks now. I sure wish it would take all the symptoms away like abdominal pressure but that is slowly getting better too. It is the vulvar vestibulitis and pelvic floor muscles that are bothering me now. Could be that I am eating too many oxolate containing veggies but I am truly running out of options for food so I don't know what to eliminate

        The specialist put me on Elmiron. I am loath to take any meds but I did decide to try it. He said that as we seem to have caught it in the early stages we have a much better chance of treatment being effective. I sure hope so!!!

        Are you following the diet strictly? How long have you been following it? Please let me know how you are making out.

        Best wishes

        Suzi

        Comment

        • #5
          More

          Suzi,

          My doctor said the next text for me would be a cystoscopy, but fortunately, my doctor puts the patients out for the procedure. I was sure glad to hear that. I do realize the procedure itself could cause discomfort later. I'm still not looking forward to it.

          I am trying the diet, but finding it very hard. These are the things I really miss: most fruits, peanut butter, all spicy foods (my favorite!), salsa, tomatoes, and my gin martinis! It sucks, but so does the pain. I'm sorry to hear you've lost all that weight. It's hard when you limit everything you eat. I hope you're right about catching it early and having a better chance of it getting better.

          I am currently on a very low does of oxybutynin (anti-spasmodic), but I really don't think it does much to help. Hopefully, the Elmiron will help you.

          I just don't understand how this all happened so quickly. I have read the average age of onset is 40, and that's my age. It was like I was fine one minute, then the next day, I had problems. It doesn't make sense to me that some days, I feel almost completely normal, and others, I am so bothered by it. It's certainly frustrating.

          To make matters more complicated, I have a 4mm kidney stone which they found by catscan, in my right kidney. I had horrible pain over my kidney the other day for about 15 minutes, then it went away. So, I don't even know where the stupid stone is now. I keep bracing myself for major pain. Looking back, I think I passed a stone right before all this ic stuff happened.

          Well, it's chicken and veggies tonight again. Oh, and a plain salad with boring dressing!!

          I will let you know how my appt goes on Thursday.

          Thanks for all your help,
          Jane
          Jane
          Diagnosed 1/7/14 via cysto/hydro

          Current Treatment:
          10 mg amitriptyline, DH Aloe Vera

          Used During Flares:
          Uribel, extra DH Aloe Vera, Klonopin and Tramadol (as needed)

          Practicing bladder training and stress control (hot baths, pelvic stretching)
          Recently tried PT, do not appear to have PFD

          Things that have not helped in the past:
          Oxybutynin, Vesicare, Pyridium, Myrbetriq, Vagifem

          Also have migraines and IBS

          Comment

          • #6
            Penut butter

            OMG I have been eating this for about 3 weeks every day for breakfast. I had no idea it was on the no-no list!
            TMJ Dysfunction 2009
            Vulvodynia and/or PFD 2010
            IC, based on symptoms alone 2010.
            PCOS March 2012

            8 month remission following the birth of my beautiful daughter Imogen Rose 25/12/12....currently flaring and hoping to get remission back, life without IC was amazing!

            Currently using: IC Diet...pain meds as needed
            Medications / treatment tried and discounted:
            Fluconazole 150mg 1 per week for 6 months (yeast)
            Endep 25mg - 4months
            Lyrica 75mg - 2 months - FLARE
            Oxytrol patch - I think this caused retention.
            Countless creams, lotions and potions.
            Cystoprotek - no change in symptoms
            PT - for 1 year
            Various herbs and supplements

            Comment

            • #7
              Jane,
              Please tell me what the boring salad dressing is. I haven't had any salad in a month because I don't know what the heck to put on it and I can't stand to eat lettuce plain and no tomatoes to boot!

              Comment

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