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Flare or UTI AAAArrrgh! some help please?

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  • #1

    Flare or UTI AAAArrrgh! some help please?

    I have been doing so well for the last 6 months and now am back to square one with EXTREME PAIN! Not sure whether its a UTI or a flare but the peeing is back to constant and each time I about pass out from the pain. On top of it I've started to notice clumps of blood in the tissue paper after I'm done (and I had a total hysterectomy so no chance of that being the cause). Problem is my uro is gone for the weekend. Do you think I should call my regular doc. I can barely sit up it's so bad and have taken all of the pain meds I'm allowed for now. I'm broke so having to go to the doc is something I'm trying to avoid but the blood has freaked me out a little(okay a lot!). It's been a week now but today is the worse! Any thought guys and gals?
    thanks,
    Cynthia
    Initially diagnosed with IC July 2009.
    Officially diagnosed with IC/PFD February 2010.

    Additional problems past and present:
    Hypothyroid, joint pain(fibromyalgia or arthritis), heart problems(so far in remission with this),pre total hysterctomy:severe endometriosis, ovarian cysts, cervical dysplasia,had intestinal obstruction due to adhesions. Allergies to Tetracycline, Bentyl and Bromocriptine. Skin allergy to latex, tomatoes and hard cheese.

    Things that help my IC:
    IC diet
    Keeping stress(good or bad) to a minimum
    Percocet as needed
    Ativan as needed(rarely anymore!)
    Prelief
    Amitriptyline 20 mgs nightly

    Physical therapy for PFD
    Things that didn't help or made it worse:
    Heparin Instillations
    Prosed
    Atarax
    Pyridium
    Tags: None
  • #2
    So sorry.

    I'm sorry you're hurting so much. Does your uro have an answering service? I would think that with the blood you might need to see someone soon.
    ~Star B.

    Conditions:
    Interstitial Cystitis
    Fibromyalgia
    Chronic Fatigue
    Endometriosis
    Neurally Mediated Syncopy

    Comment

    • #3
      Hi Cynthia,
      I'm sorry you're feeling so sick! And on a holiday too

      1. I'd definitely call the urologist's office & see if you can speak with the doctor on call. If no one is available there or no one calls you back for several hours, you still have several options.

      2. There are often Urgent Care centers open on holidays & weekends during the day. If you have insurance, the insurance company will have them listed on their website or at their phone number. If not, you can google search your area for them or often, hospitals will know where they are locally.

      3. If no one is answering the phone at the insurance company, check the back of your insurance card to see if they have an advice nurse number, that advice nurse can recommend you seek treatment now (which reduces chance of dispute over your bill) and can connect you to someone who will look up the local Urgent Care offices.

      4. If those are not options, the Emergency Room is probably the next option.

      Your own urologist or primary care doctor is usually your best option, and then Urgent Care or the ER.

      I wouldn't wait two days on this, if it is a UTI, you don't want it to get worse or go to your kidneys.

      I'm sorry, 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

      • #4
        Flare Help

        Have you tried a 1/2 tsp. of baking soda in water? I put mine in an empty gel cap and swallow it down with a full glass of water, b/c I can't stand the taste. Just thought I would suggest this. Hope you feel better soon. ~Susan

        Comment

        • #5
          I hope you were able to see a doctor. It sounds very much 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

          • #6
            How are you doing, Cynthia? I sure hope you were able to be seen by someone to check out what's going on with your bladder. Hopefully it's a UTI. That's terrible to say, but I know I'm always hoping for that news since it means there's an end in sight.

            Hope you're feeling better!
            Vicki
            "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

            Comment

            • #7
              Hi guys,
              thanks for the response. I did get in to see my doc. Of course she's not sure yet whether it's an infection or not until she gets the lab results back. In the meantime she's got me on cipro. If it doesn't come back as an infection then she wants to look inside my bladder, I guess because of the blood and pain.
              Vicki, I just read you got a flare! Oy vey I'm sorry! this stuff can be such a drag.
              Initially diagnosed with IC July 2009.
              Officially diagnosed with IC/PFD February 2010.

              Additional problems past and present:
              Hypothyroid, joint pain(fibromyalgia or arthritis), heart problems(so far in remission with this),pre total hysterctomy:severe endometriosis, ovarian cysts, cervical dysplasia,had intestinal obstruction due to adhesions. Allergies to Tetracycline, Bentyl and Bromocriptine. Skin allergy to latex, tomatoes and hard cheese.

              Things that help my IC:
              IC diet
              Keeping stress(good or bad) to a minimum
              Percocet as needed
              Ativan as needed(rarely anymore!)
              Prelief
              Amitriptyline 20 mgs nightly

              Physical therapy for PFD
              Things that didn't help or made it worse:
              Heparin Instillations
              Prosed
              Atarax
              Pyridium

              Comment

              • #8
                Okay, I'm so frickin' annoyed right now, I just need to vent! After taking the 3day supply of antibiotic and waiting to see if I have an actual infection, I finally get ahold of the nurse only to find out that she had "inadvertantly forgot to send the sample out"!!!?? I don't like taking antibiotics unless I absolutely need to as I tend to develop intolerances to them over time. so now she wants me to take 3 more days since I'm still having symptoms and THEN if it's not clear to come in for ANOTHER urine sample!!!
                .

                I feel like skipping it for now and just see if things will calm down since it's a little better. Is that crazy?
                Initially diagnosed with IC July 2009.
                Officially diagnosed with IC/PFD February 2010.

                Additional problems past and present:
                Hypothyroid, joint pain(fibromyalgia or arthritis), heart problems(so far in remission with this),pre total hysterctomy:severe endometriosis, ovarian cysts, cervical dysplasia,had intestinal obstruction due to adhesions. Allergies to Tetracycline, Bentyl and Bromocriptine. Skin allergy to latex, tomatoes and hard cheese.

                Things that help my IC:
                IC diet
                Keeping stress(good or bad) to a minimum
                Percocet as needed
                Ativan as needed(rarely anymore!)
                Prelief
                Amitriptyline 20 mgs nightly

                Physical therapy for PFD
                Things that didn't help or made it worse:
                Heparin Instillations
                Prosed
                Atarax
                Pyridium

                Comment

                • #9
                  Sheesh! She forgot to send it in? I wonder, can she now, or do you have to go in and give another sample? Does a sample get 'old' or perhaps compromised over time?

                  I understand your reluctance to continue with the antibiotics in case they're un-needed. On the other hand if you're feeling a little better maybe they are doing something. Tough call. I'm sorry they put you in that position.

                  Vicki
                  "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

                  Comment

                  • #10
                    Hey Vicki,
                    no she actually lost it! I started calling yesterday to find out whether it was an actual infection or not and they didn't bother to call me back until this evening after I called several more times to tell me this and ONLY after I insisted on knowing whether it was an infection or not! She was trying to just prescibe another refill and not tell me!?? Anyway, I think I'm going to wait since it's Cipro and that stuff can be gnarly on the body. Hope you're doing better yourself?
                    Cynthia
                    Initially diagnosed with IC July 2009.
                    Officially diagnosed with IC/PFD February 2010.

                    Additional problems past and present:
                    Hypothyroid, joint pain(fibromyalgia or arthritis), heart problems(so far in remission with this),pre total hysterctomy:severe endometriosis, ovarian cysts, cervical dysplasia,had intestinal obstruction due to adhesions. Allergies to Tetracycline, Bentyl and Bromocriptine. Skin allergy to latex, tomatoes and hard cheese.

                    Things that help my IC:
                    IC diet
                    Keeping stress(good or bad) to a minimum
                    Percocet as needed
                    Ativan as needed(rarely anymore!)
                    Prelief
                    Amitriptyline 20 mgs nightly

                    Physical therapy for PFD
                    Things that didn't help or made it worse:
                    Heparin Instillations
                    Prosed
                    Atarax
                    Pyridium

                    Comment

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