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So confused! The pain is changing.

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  • So confused! The pain is changing.

    Last week I had a great week. My symptoms were very low level and I started to think I was finally coming out of this blasted flare.

    But, the past few days I've been feeling much worse (it's not a uti) and the pain is changing. My usual pain is mostly burning...uncomfortable but still able to go about daily activities. But lately it's been more intense. It's not's cramping, jabbing, sharp poking, etc.

    For the first time in four years I'm thinking I need to talk to my uro about pain meds. This flare has been hard enough to deal with, but now it's feeling so much more unpredictable and really scary!

  • #2
    So sorry to hear you are feeling so bad. I hated having to ask for pain meds, and I had a hard time with my first Doctor. But there are Docs out there who realize just how painful IC can be and that we need to function and can only do so if our pain is controlled. I wish I had ideas as to why your pain has gotten so bad, but I am fairly new at this. I have had a pretty bad flare ever since Easter and getting back from vacation. My pain got to the point where my Doc had up my meds! IC can be so tricky come times!
    I hope you are able to find some relief soon.
    IC; PFD; possible Fibromyalgia; IBS;

    Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

    I've Tried:
    three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
    Currently using:
    Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
    Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
    I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!


    • #3
      HI! Maybe what started out not being a uti is a uti now? Maybe you should have your urine cultured again, just to make sure. Have you tried Azo Standard for OTC pain relief?
      I hope you are able to get your pain under control and things get better for you soon! 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's amazing stuff!!:woohoo:


      • #4
        The sharp pains you are describing sounds like bladder spasms.. The kind of mimic labor contractions, well for me anyways.. You can ask your doctor for antispasms meds first and just see if that helps.. I know they help me..Good luck and I hope you start feeling better soon

        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:

        Diet Reference Sheet:

        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.


        • #5
          The pain I have I describe as a backward UTI pain with sort of a "sucking-in" something like when you break the seal on a jar. It comes when my bladder is almost finished emptying. I can feel it start and I always think..oh I wish I could keep peeing. I just do an instill and that takes care of it for me.
          TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
          My Helpful Hints for Home Instillation:

          Institute of Female Pelvic Medicine (J. Dell, My MD)
          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


          • #6
            My pain changes all the time too. I get the sharp pains, jabbing pains, squeezing pains, pounding pains. I think since it changes all the time it makes it harder to treat or deal with.


            • #7
              I agree with Ronda --- it does sound like your bladder muscles are in spasm. There are several different antispasmodics that could help with that. The one I usually use is hyoscyamine, but there are several others as well.

              Stay safe

              Elmiron Eye Disease Information Center -
              Elmiron Eye Disease Fact Sheet (Downloadable) -

              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:


              Diet list:

              AUA Guidelines:

              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.

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


              • #8
                Thanks everyone. I ended up calling my uro today and talking to the nurse. I
                ran into the office and had a urine culture, which I'm sure will be negative, but it's always best to rule out a uti.

                I agree that my bladder is spasming...and it's starting to affect my pelvic floor muscles. I have that horrible pressure in my vaginal and anal area from really tight muscles and the xanax is only slightly controlling it. It's a bummer because I haven't had that feeling since I was first diagnosed four years ago!

                I'm really not sure what caused this change. Although, my allergies have been flaring like crazy even on my allergy meds and I'm sure that's not helping things.

                Anyway, I'm still not ready to try instills, but I was given a perscription for elavil that I'm starting tonight. Wish me luck! I just need something to help with the pain and relax my muscles. My heating pad and I have become best friends!


                • #9
                  Robin, I hope you are feeling better by now.

                  Let's keep praying for a cure.
                  IC Symptoms began in early 2001
                  Divorced : Sept 2002 (Partly due to IC)
                  Diagnosed with IC in April 2004
                  Most recent injury - Rupurtured Left Achilles Tendon
                  Wed Jan 28 2009
                  (Ice Storm Accident)
                  2nd Achilles Tendon Surgery - May 28, 2009 after re-injury on May 17
                  Other Injuries
                  Broken Left Ankle - July 2004 ( fell off ladder)
                  Broken Left Ankle (Again) - May 2005 (car accident)
                  Sprained Left Ankle - November 2006 ( fell off my aunts porch on Thanksgiving Day)

                  CURRENT MEDS
                  Elmiron, Pyridium


                  • #10

                    I have just started back on meds and instills for the bladder. I was doing very well for about 8 months and it returned. Today, I am feeling much better. I had an instill yesterday of heprin, only, but next week the nurse wants to try DSMO, Steriod and Licocaine. I know you are concerned but it may take a instill of some kind to let the bladder heal. I also take Neurntin, Hydroxyzine and Pyridium Plus when I have urgency. Prelief has been very helpful. I did well on Elmiron for about a year and then it stopped working. You may want to give that a try. I had pain most of last week. The doc told me not to chase the pain, meaning you keep some meds in system all the time.