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Is this a flare or a UTI? Freaking out. Please talk me down!

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  • Is this a flare or a UTI? Freaking out. Please talk me down!

    OMG, I'm such a moron. I had an appt yesterday with my GP to have a urine test and cancelled because I started feeling better and I figured this could all wait until I see my new uro/gyn next week. I took an AZO so that it would speed up the healing process but now I feel SOOOOOOOOOO much worse. I'm still confused because I have no pressure like I would with a UTI but I have urgency and MAJOR burning after I pee. I had gotten positive leukocytes but no nitrites on my home dip stick so I assumed it was just a flare. IS IT???
    And to make matters worse my husband left at the wee hours this morning for a business trip so it's just me and the kids until Sunday. I seriously want to cry.

    This all started after taking Uribel after sex late last weekend like my former doc suggested. Caused major stomach pains/diarrhea and retention.

    So....can I get a urine culture today even though I'm peeing orange from the AZO? If AZO is doing nothing for my burning/urgency, would pyridium be the same?

    Even though I've been having UTIs/IC issues for like 15 years I still can't tell the difference between a flare and an infection. I don't want to take antibiotics without results because I suspect that might've been what gave me IC in the first place.
    I've been in remission for ages and this all started after Christmas (long drive home from New England in a blizzard) and that wound up feeling like a UTI but was a flare.

    I'm rambling. Gotta take my daughter to school...
    ARGHHHHHHHHH.
    Mom to two littles (remissions while pregnant/breastfeeding)
    Sufferer since mid-90s
    Finally dx'd properly much later

  • #2
    Please do call your doctor's office. It sounds like infection is a possibility.

    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


    • #3
      Definitely get to the doctor. The only way I know I have a UTI besides seeing that WBC on the test strip (thats definitely a signal something is going on) is the burning at the end and after I pee.

      I think you're right though the AZO will cause a problem because they won't be able to dip stick it. Should still call your doctor, maybe they will call you in a prescription either way.

      Antibiotics don't cause IC that I know of, I've never heard that before. I think what happens is alot of times people say their IC started after a UTI because the bladder gets inflamed and irritated and maybe the lining gets compromised. Its not the antibiotics per se that are the problem.

      Hope you feel better. Anytime I see those leukocytes I have something going on that isn't good and its usually not just my IC acting up.

      Yes, I think pyridium is the same active ingredient as AZO.
      Cindi


      Gelnique for frequency/urgency - works great
      Macrobid after sex
      Prilosec, continuous birth control pills
      synthroid .088mg, mucinex-d, restasis

      Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

      Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

      IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
      AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
      AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
      Great treatment flowchart on page 19 of the pdf

      Comment


      • #4
        Yes, over the counter AZO is a low dose pyridium.
        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


        • #5
          Originally posted by cmclien View Post
          Definitely get to the doctor. The only way I know I have a UTI besides seeing that WBC on the test strip (thats definitely a signal something is going on) is the burning at the end and after I pee.

          I think you're right though the AZO will cause a problem because they won't be able to dip stick it. Should still call your doctor, maybe they will call you in a prescription either way.

          Antibiotics don't cause IC that I know of, I've never heard that before. I think what happens is alot of times people say their IC started after a UTI because the bladder gets inflamed and irritated and maybe the lining gets compromised. Its not the antibiotics per se that are the problem.

          Hope you feel better. Anytime I see those leukocytes I have something going on that isn't good and its usually not just my IC acting up.

          Yes, I think pyridium is the same active ingredient as AZO.
          I'm not saying that antibiotics caused my IC, but I do think that they might have contributed. And I think it's a terrible idea to take antibiotics without having a diagnosis first -- this is why antibiotic resistance happens.
          When I've had UTIs in the past I had extreme pressure and I don't have that now so that's why I'm wondering if it's a flare. I've been flaring since Christmas very much like this -- feels like a UTI and then it goes away and then comes back a few weeks later. Hence my trip to the new urogyno next Tuesday.

          So I called the company who makes AZO and they told me that it's really common for a person with IC to have the leukocytes be positive but not the the nitrites. And they told me that if I'm still peeing orange a urinalysis won't work. So then I called the doctor's office back (had made an appt or 11 today prior to calling AZO) and told them what AZO said. The receptionist asked the doc and came back and said they can send it somewhere that will be able to read it even with the AZO.

          Ugh, this whole thing is driving me batty! This shouldn't be so hard.

          The first pee this morning was killer though so I definitely want to have the urinalysis to be on the safe side.
          Mom to two littles (remissions while pregnant/breastfeeding)
          Sufferer since mid-90s
          Finally dx'd properly much later

          Comment


          • #6
            Thats good they can send it out, hope you get relief soon!

            Did the AZO people tell you why people with IC often have leukocytes in their urine? Its probably a sign of inflammation right? Might be coincidence but they always seem to make me feel better when I have them and I take the antibiotics. Generally they are not there (the leukocytes). My UG did say maybe they are indicative of a developing UTI. Not far enough along to cause a red blood cell count to develop but maybe enough to feel symptoms...
            Cindi


            Gelnique for frequency/urgency - works great
            Macrobid after sex
            Prilosec, continuous birth control pills
            synthroid .088mg, mucinex-d, restasis

            Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

            Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

            IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
            AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
            AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
            Great treatment flowchart on page 19 of the pdf

            Comment


            • #7
              Originally posted by cmclien View Post
              My UG did say maybe they are indicative of a developing UTI. Not far enough along to cause a red blood cell count to develop but maybe enough to feel symptoms...
              That's always what I have thought too because I have felt like I had a UTI several times and had that happen when I use the home UTI test kits. Then, I go drop off a culture, but it says I dont have an infection, (even when they grow it for several days.) But, then, I usually get worse for the next few days and then it DOES show up on my home UTI test strips, so I go back again for another culture and THIS time, an infection DOES show up! It can be really frustrating. (Especially when you are sure it's an infection but it just doesnt show up at first.)

              BTW, I have dropped off a urine sample many times after I have taken AZO or Utira C (another bladder med, similar to Pyridium), and they were always still able to test my urine, (and an infection has shown up many times.)

              I often take Macrobid prophelactically after doing a home instill. Sometimes I feel like I have an infection, but always wondered if an infection will show up if you are already on an antibiotic (even a low dose)? Does anyone know?
              I am not a medical professional. I do not give medical advice. In all cases, I urge you to talk to your Dr. about your treatment options.

              D/Xed 2003 with IC. Also have the co-existing condtions of VV, Vulvadynia, Lupus, Fibro, GERD, CPP, Endo, & Adhesions, and Depression

              Meds: Estrogel (due to total Hyster)
              The meds r/xed by my Pain Dr. from the Pain Clinic are as follows: Morphine ER and IR, Baclofen, and Lyrica and Seroquel (used off-label as a sleeping pill, but it also helps with depression)


              (I listed my meds in case someone reading this has been told like so many ICers that Drs dont r/x pain meds for IC.) I want you to know that there ARE tons of us who are also dealing w/this disease and the pain and many of us ARE on pain meds.)


              John 3:16 For God so loved the world that he gave his only begotten son, that whoever believes in him shall not perish but have everlasting life.

              Comment


              • #8
                Amaranthe -I often take Macrobid prophelactically after doing a home instill. Sometimes I feel like I have an infection, but always wondered if an infection will show up if you are already on an antibiotic (even a low dose)? Does anyone know?

                I also take macrobid prophelactically now too after sex. My doctor said taking them this way won't build antibiotic resistance (guess it depends on how much sex you have ha ha lol). Anyways I have been told that once you are on an antibiotic it will mask the bacteria or knock their count down too much to be reliable. I think thats why they get really annoyed if you start them first before the culture which I only do now if I'm peeing blood! Sorry, TMI

                BTW Thats interesting about the leukocytes and then the later developing infection. I think maybe because the IC or something we feel them come on earlier, I am very aware of every little sensation in my bladder it seems like.
                Cindi


                Gelnique for frequency/urgency - works great
                Macrobid after sex
                Prilosec, continuous birth control pills
                synthroid .088mg, mucinex-d, restasis

                Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

                Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

                IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
                AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
                AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
                Great treatment flowchart on page 19 of the pdf

                Comment


                • #9
                  The Macrobid prophylactically after sex didn't work for me -- in fact it made me feel very yeasty. That required a whole other set of doctors and drugs.

                  Saw the Physician Assistant at my doc office -- super nice guy, great bedside manner. He asked a lot of questions and agreed that we should wait and see if the culture shows anything before prescribing abx. He also mentioned that he sees a bunch of IC patients who've had wonderful results with very low-dose Elmiron. That drug scares me.
                  The whole time I was at the office I felt pretty good -- just a tiny bit of uncomfortableness. My symptoms really seem to wax and wane this episode.
                  My results should be in by Saturday. They were able to do a dipstick in the office and I kind of waited around a bit to see what it showed and before I left there wasn't any bacteria. Who knows what'll happen when the lab sees it.

                  I've been using baking soda in water and it's been helping so much. Not perfect (still peeing weird and slightly itchy/burny urethra) but not awful.

                  I didn't ask the AZO woman about why IC people might have the high WBC but no bacteria -- but the PA I saw today also mentioned that it's fairly common. It CAN be a sign that an infection is brewing or it can be just inflammation.
                  Mom to two littles (remissions while pregnant/breastfeeding)
                  Sufferer since mid-90s
                  Finally dx'd properly much later

                  Comment


                  • #10
                    I hope you start feeling better soon. I am posting because I am having similar symptoms right now. I have had IC-like symptoms on and off for a year. I don't have a full diagnosis yet, but my Uro says it is most likely IC. I have had constant irritation and the sensation to pee since after my 8 Heparin treatments that ended early this year. I was so bummed that my symptoms came back as I was feeling good during treatments.

                    For the last week the urgency and frequency have been really bad -- almost worse than they have ever been. I feel like I have to go all the time and there is a constant irritation/burning and after I pee. It feels more like my urethra than my bladder and almost like I could leak at any time. It feels like the start of a UTI... but hasn't gotten any worse. I am thinking maybe I should get a urine test. I have a prescription for a culture from my doc if I need it, but I have a scheduled appt soon too.

                    I have never tried the over the counter tests - do they work? Has anything else helped you besides the baking soda/water? I would love something to help with the frequency/burning.

                    I totally feel for you as I have a one-year-old boy and it's hard to keep up with him all day when feeling bad.

                    Comment


                    • #11
                      Why does Elmiron scare you?

                      Comment


                      • #12
                        I had a low-level UTI that I'm now treating with Macrodantin and had a fantastic visit with my new urogyn who thought our best bet would be to try Elmiron, Elavil, Instillations, and valium suppositories. Well, I was scared to death of the instillations (catheter!!!! EEK) but it wasn't too bad and it took away the majority of my pain. I still have pressure but the urgency is better and so is the urethral burning. I started taking the Elavil and was a total ZOMBIE the first day after I took it. Yesterday and today are better. I still feel groggy but it's more like how I feel after I take allergy meds. I never filled the Elmiron because it cost $500 for a month supply!!!! Um, no. I'm going to see if I can try the valium suppositories this weekend but am concerned that when it's combined with the Elavil I'll be nearly catatonic and won't be able to function. We'll see. But all in all I'm feeling optimistic about working with this new doc. I've had a ton of bad experiences with doctors in the past and this guy has given me a renewed faith in mainstream medical practitioners...

                        Originally posted by MasterAli22 View Post
                        I hope you start feeling better soon. I am posting because I am having similar symptoms right now. I have had IC-like symptoms on and off for a year. I don't have a full diagnosis yet, but my Uro says it is most likely IC. I have had constant irritation and the sensation to pee since after my 8 Heparin treatments that ended early this year. I was so bummed that my symptoms came back as I was feeling good during treatments.

                        For the last week the urgency and frequency have been really bad -- almost worse than they have ever been. I feel like I have to go all the time and there is a constant irritation/burning and after I pee. It feels more like my urethra than my bladder and almost like I could leak at any time. It feels like the start of a UTI... but hasn't gotten any worse. I am thinking maybe I should get a urine test. I have a prescription for a culture from my doc if I need it, but I have a scheduled appt soon too.

                        I have never tried the over the counter tests - do they work? Has anything else helped you besides the baking soda/water? I would love something to help with the frequency/burning.

                        I totally feel for you as I have a one-year-old boy and it's hard to keep up with him all day when feeling bad.
                        It's so hard with a toddler -- so SO hard. I completely empathize. I'm sorry you're feeling so lousy. Are you talking about Heparin instillations? What else was in the cocktails? Why does your doc think you now feel worse after? That's really scary...
                        And no, I really haven't had much luck finding something to get rid of the burning/pain in my urethra. So far I'm feeling better than I was after having my first ever instillation on Tuesday but I did have some localized pain/burning last night. Lasted for about 30 minutes or so.
                        Please report back with what happens after you have your appt. Good luck and please PM me if you want to commiserate. It's good to have a support network built up especially since seem to have a lot in common.

                        Originally posted by momto3
                        Why does Elmiron scare you?
                        Elmiron scares me because it has pretty nasty side effects (including ones that could potentially make my pelvic pain worse like diarrhea) and only helps about half of the people who take it. All things considered and in the world of drugs, those aren't bad statistics but I'm not sure I'm willing to risk the side effects for something that has a 50/50 shot of working. I'd like to try other protocols first if at all possible.
                        Mom to two littles (remissions while pregnant/breastfeeding)
                        Sufferer since mid-90s
                        Finally dx'd properly much later

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