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  • Somebody please HELP!!!

    I am having a major flare right now and I need some advice. I would normally would call my doctors office but it's the weekend so I am going to have to wait till Monday which seems like an eternity when my urethra is on fire and my pelvic pain is bad. I follow the diet and use lydocaine gel but the problem is I'm not supposed to put on the lydocaine too much because too much of it can lead to serious side effects and I already used it once today. I am having serious burning in my urethra, urgency, and bad pelvic pain. I have pain meds but they normally don't help with the burning. Please give me some suggestions and anything that I could mention to my doctor on Monday. I am not really into alternative meds and heat/ice isn't helping. What do you take for the burning? Also I take prosed and it isn't working either. Please please help.

    Thanks,
    Jessica
    Take: elmiron 2twice a day
    Cymbalta once a day
    Prosed ds as needed
    Lydocaine gel as needed
    Tramadol as needed
    Oxycodone as needed
    Orthro Evra Patch continuously because periods make my flares worse
    Diagnosed with severe IC April 2011

    Suffered for 8 years without a diagnoses
    I'm 23 and have always had issues but when I was 16 things got much worse. I saw urologists, pediatricians, and gynecologists and nobody had any answers it was either in my head or an infection. Finally found a wonderful doctor who diagnosed me with IC.

  • #2
    Is there an Urgent Care near you so you can get checked for infection in the morning?
    Or you can use an at-home UTI test kit (CVS and most major drug stores have them. If you have an infection you shouldn't wait til Monday. If the pain is really bad, you can still call your doctor's office, most of them have someone on call. If they tell you to go to the ER, it can help if the insurance company hassles you about the cost. Just document who told you to go to the ER and what time you talked to them.

    I hope you feel better 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!

    Comment


    • #3
      Thanks for the reply kadi but I have had this before and I always get it checked for UTI's (I am prone to them) and it always comes back there's protein on a dip but when they send it off to the lab it's not an infection. My doctor thinks that's why I have such a severe case of IC because I seem to always have a little bit of protein in my urine. I have dealt with this for a long time and I have finally been able to tell the difference between an infection and a flare. I am pretty sure it's not an infection but if I call on Monday and they want to check for one I will gladly do it just to rule it out however I can't afford to spend a lot of money on an ER visit for an infection. I am so sorry if I sound rude at all I am just sick to death of always being told it's an infection and it never is. I really appreciate the feedback though.

      Thanks,
      Jessica
      Take: elmiron 2twice a day
      Cymbalta once a day
      Prosed ds as needed
      Lydocaine gel as needed
      Tramadol as needed
      Oxycodone as needed
      Orthro Evra Patch continuously because periods make my flares worse
      Diagnosed with severe IC April 2011

      Suffered for 8 years without a diagnoses
      I'm 23 and have always had issues but when I was 16 things got much worse. I saw urologists, pediatricians, and gynecologists and nobody had any answers it was either in my head or an infection. Finally found a wonderful doctor who diagnosed me with IC.

      Comment


      • #4
        No worries, you're not rude. I actually bought a huge jar of urine test strips to keep at home just so I know for sure. I always recommend to anyone who has a spike in symptoms to get checked for UTI because when I first got IC, I mistook an actual UTI for a flare and ended up with a truly awful kidney infection & was very sick. So, always better to err on the side of caution!

        The things I try for a very bad flare are:
        1. My usual pain meds
        2. A dye free Benadryl because sometimes allergies set off my flares (even if I don't have nasal congestion)
        3. A hot bath (somehow immersing myself in hot water can help)
        4. Baking soda in water, followed by 2 plain white TUMS antacids 2 hours later
        (Only do this if you don't have trouble with sodium or high blood pressure)
        5. After #1-4, serious distraction (video, book, podcast) to try not to panic

        I hope you feel better very 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!

        Comment


        • #5
          I assume you have tried a warm (not hot) bath in a 1/2 cup or so of baking soda? After my cysto when I felt 'raw' that was even better than pain meds were. I took to soaking about 6 times a day because it felt so good.

          Comment


          • #6
            I have tried the baking soda and bath- not working
            Kadi- out of curiosity why the tums?

            I understand all of the other steps because I also do those things (which reminds me I need to pick up more benadryl) but I haven't heard of using tums before. What does that help with? Also just an FYI I am lactose intolerant. I know some people swear by a good milkshake (it's supposed to coat your bladder or something) but unfortunately I can not go that route.

            Thanks
            Jessica
            Take: elmiron 2twice a day
            Cymbalta once a day
            Prosed ds as needed
            Lydocaine gel as needed
            Tramadol as needed
            Oxycodone as needed
            Orthro Evra Patch continuously because periods make my flares worse
            Diagnosed with severe IC April 2011

            Suffered for 8 years without a diagnoses
            I'm 23 and have always had issues but when I was 16 things got much worse. I saw urologists, pediatricians, and gynecologists and nobody had any answers it was either in my head or an infection. Finally found a wonderful doctor who diagnosed me with IC.

            Comment


            • #7
              I read about the baking soda, followed by the TUMS in a book on IC. I think (?) the theory is that they both neutralize acid and can reduce burning. It's been helpful when I've been in an especially bad flare.
              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


              • #8
                I can't take the baking soda because of high blood pressure so I take 4 Tums for a flare --- it pretty much does the same thing as the soda. I agree that doing a home test kit to rule out infection is a good idea. If you get a "positive" you can telephone your doctor. As Kadi says, nearly all will have someone on call who can help.

                Sending healing thoughts,
                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


                • #9
                  Unfortunately I am not any better today . I finally sucked it up and took my strong pain med which I was trying to avoid because I have to be bed ridden after I take it because it's so strong. The pain med just wore off and now I am in extreme pain again. I am considering going to do a UTI test just to make sure it isn't. The burning and irritation is so bad I am starting to wonder if it is an infection. Briza my doctor cautioned me against using lydocaine to much because if your body absorbs to much lydocaine you could have seizures/heart problems/ and in extreme cases death. My doctor told me it's not very likely but the more you absorb into your system the better chances you have of having these side effects. So he told me only to use 2-3 times a week.

                  Thank you all for the replies and support and I will let you know if it is an infection or not. If it isn't then I will just wait until tomorrow morning so I can talk to my doctor. If it is I will call the on-call system today.

                  Thanks
                  Jessica
                  Take: elmiron 2twice a day
                  Cymbalta once a day
                  Prosed ds as needed
                  Lydocaine gel as needed
                  Tramadol as needed
                  Oxycodone as needed
                  Orthro Evra Patch continuously because periods make my flares worse
                  Diagnosed with severe IC April 2011

                  Suffered for 8 years without a diagnoses
                  I'm 23 and have always had issues but when I was 16 things got much worse. I saw urologists, pediatricians, and gynecologists and nobody had any answers it was either in my head or an infection. Finally found a wonderful doctor who diagnosed me with IC.[/QUOTE]

                  Comment


                  • #10
                    I know this is going to sound simplistic, but take Prelief several times a day. Prayer and Prelief ---- which was an answer to prayer--- ended my last bad flare. Then I tried cutting back on the Prelief, and the flare returned. Went back to regular dosing, and the flare subsided again.

                    Comment


                    • #11
                      So no UTI just a flare. I will say that I took 4 tums like Donna suggested and that really helped with the burning. It's still there but it isn't as sharp as before it's more of a dull burn right now. However my pelvic pain has gotten worse so I think I am going to try my heating pad and a hot bath. That always helps me a little. Also I will definitely check out prelief. Quick question can I find that at my local pharmacy or do I need to order it online.

                      Thank you so much for all of the suggestions and help. If anyone has any other good tips please let me know. I am willing to try anything.

                      Jessica
                      Take: elmiron 2twice a day
                      Cymbalta once a day
                      Prosed ds as needed
                      Lydocaine gel as needed
                      Tramadol as needed
                      Oxycodone as needed
                      Orthro Evra Patch continuously because periods make my flares worse
                      Diagnosed with severe IC April 2011

                      Suffered for 8 years without a diagnoses
                      I'm 23 and have always had issues but when I was 16 things got much worse. I saw urologists, pediatricians, and gynecologists and nobody had any answers it was either in my head or an infection. Finally found a wonderful doctor who diagnosed me with IC.

                      Comment


                      • #12
                        Some local pharmacies carry it, some don't. I've found it most consistently at Walgreens. Sometimes it's with the antacids, but sometimes it's located next to the Bean-o. (Same manufacturer).

                        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!

                        Comment


                        • #13
                          I've had IC for 13 yrs. just since Sept. been in a lot of pain after urinating! The pain lasts awhile & am starting to get burning too! My Uro started me on Elmiron & after just 1 dose that's when my problems got worse. Almost a month later & still having problems. Also i just got diagnosed with an Inguinal Hernia.. not sure if that is contributing to the pain after urinating? I want it to end too so bad! Very confused! Wouldn't make it without prayer!!!!!!

                          Comment


                          • #14
                            I wouldn't make it without prayer, either. I've had IC for 21 years.

                            Comment


                            • #15
                              Just wanted to mention that sometimes they keep the Prelief behind the counter. (CVS, or Walgreens, even Wal-Mart if I remember correctly.) Seems the pharmacy techs hadn't heard of it but the pharmacist always seems to know. I hope you find it soon, it's a lifesaver for me!!!
                              (formerly DonnaRenee1)


                              Diagnoses: IC, fibromyalgia, inflammatory arthritis, connective tissue disease, reynaud's, APS, (the lupus anticoagulant, also known as "sticky blood syndrome")
                              Meds: low molecular weight heparins, synthroid, methadone for pain, tizanidine, cymbalta, pyridium plus, urelle, phenergan for nausea, ambien, lisinopril, norvasc, plaqenuil for arthritis, and over the counter Prelief
                              Treatments: DMSO, occasional hydrodistentions, hot baths, strategically placed heating pads and ice packs, TENS unit, and everything from pity parties to prayer.
                              I have lots of support from my family. My husband and my parents are amazing! I have a wonderful daughter who also has IC, and she has given me 2 precious granddaughters. They are my heart and soul! Thank you God for my family!

                              Comment

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