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  • Burning making me crazy

    Hi...

    My bladder seemed to calm down for about a week. I even could hold my urine for two hours. Seemed like a miracle. I thought maybe, just maybe, the diet was working a little. Then BOOM... suddenly it feels like I am on fire down there. I cannot understand this. This has been happening to me for about a year now. (though I've had this IC condition maybe since I was a teen)

    I really worry IC can get worse and worse and that I'll be crippled by it eventually. I don't understand this burning sensation. I don't have infections. I have been tested many times for UTI's and other infections, and often treat myself, thinking it's a yeast infection. I know it's not. It feels like my entire genital area is burning on the outside.

    Can someone tell me why this happens? Do doctors even know about this? Could I have ingested one small thing that would cause these symptoms for days?

    I'm so frustrated. Thanks for letting me vent. I feel I need a better understanding of IC and right now I just don't have that.
    Frances

    Diagnosed: 2011 - have had symptoms for over 20 years. Diagnoses so far: Overactive Bladder, then IC, and now Myofacial Pelvic Pain Syndrome.

    Medicines: For IC am doing PT, and will be taking Gabapentin, Ativan, Tramadol and Ambien. Ice packs and drinking vanilla shakes help. Foods that cause a flare, tomatoes, yogurt, coffee, soda, all sports drinks, and most teas. Take Verapamil, Naproxen (as needed), Omeprazole, Frova (as needed) and receive Botox shots(every three months) for migraines. For allergies I use Claritin and Flonase. (Feel free to ask me any questions about meds.)

    Other conditions: Migraines, allergies, mild IBS.


    "If you believe, you will receive whatever you ask for in prayer." (Matthew 21:22)

  • #2
    you need to talk to you uro on this so you can find a treatment that works.
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    • #3
      Are you taking any baking soda in your water? It mitigates the acid in your urine. Just 1/2 teaspoon in a big glass of water if you don't have high blood pressure. See if that helps.

      Also do you use a "pour bottle" while you are urinating? Just get any kind of a long nosed empty bottle and fill it full of warm water and pour it over your urethra as you begin to "go." Throw it in your purse for when you go out and use it always.

      The homeopathic remedy, cantharsis, is very good for burning. Its only $6.00 and you can get it at WHole Foods, for one.

      Good luck.

      Comment


      • #4
        I would suggest you see your gyno about this it sounds as if something other than IC might be going on. Many people with IC have accompanying conditions such a vulvar vestibulitis or vulvadynia. Those are more nerve related but it feels as if it is outside on your skin. There is treatment for these conditions. Please see someone as soon as you can, the sooner you find out the cause you can get it treated. Look up these conditions and others and see if the description matches what you are feeling.
        Link to the patient information, everything from What is IC? to Disability
        http://www.ic-network.com/patientlinks.html

        American Urological Association Clinical Guideline
        Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
        http://www.auanet.org/content/guidel...ent_ic-bps.pdf

        Comment


        • #5
          If this is something that happens regularly, I suggest you start a diary and enter everything that goes in your mouth, along with activity levels and pain levels. You may find the irritant that way.

          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
            Are you sure you are drinking enough water?

            I find Evian is best. 2 big swallows every half hour from when I get up til an hour before going to bed.

            Comment


            • #7
              Good ideas here. Could be vulvodynia or related that your gynecologist could help you with. The bottle with water helps like said also taking prelief with every meal could help neutralize your urine making it less acidic and less prone to burning your skin.
              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


              • #8
                I, too, have a burning sensation like you describe when I flare. It is so intense it makes my eyes water and is the one symptom I'm least able to tolerate.

                "Could I have ingested one small thing that would cause these symptoms for days?" It happens that way for me. I have found I am very diet sensitive, though on the most part only to a limited amount of items. But, one small slip up with one of those items and I can pay with days of burning pain. Keeping that diary as Donna mentioned can be really helpful in identifying a trigger if your flares are being set off by diet.

                Besides the ideas already mentioned, baking soda, urethral rinse rinse bottle, and drinking enough pure untreated water, I always keep Uristat or Azo on hand to calm the burn.

                I hope this ends for you soon!
                Vicki
                "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

                Comment


                • #9
                  THANK YOU!!!!!!!!!!!!!

                  I had no idea people responded to this. I was stupidly waiting for some email message to see about responses.

                  Well...I'm going to do all the suggestions. Tomorrow I'll be going to the grocery store to buy a few things, firstly the water bottle!

                  I have been taking some AZO yeast pills to rule out a yeast infection. Also I bought Dreft laundry detergent and decided to wash all underwear in that and forgo the fabric softener from now on. I'm getting that recommended water bottle and homeopathic remedy tomorrow!

                  Honestly, I don't drink much water. I should because I've had four kidney stones. I guess psychologically I think I'll urinate more! And my bladder capacity is small.

                  Oh...I have a couple questions regarding responses.

                  First, I bought the Prelief. But wasn't sure if I should take it all the time. Should I take it daily? Or it is something I should take only with "assumed" acidic food. (like if I try a food that's not on the IC friendly list)

                  And I'm wondering about the Uristat or Azo. Should I take it continually for a few days. How do you usually take it?

                  Maybe I'm just not taking the diet seriously enough!

                  Thank God for the nice folks here!
                  Last edited by Toto; 03-06-2011, 04:41 PM.
                  Frances

                  Diagnosed: 2011 - have had symptoms for over 20 years. Diagnoses so far: Overactive Bladder, then IC, and now Myofacial Pelvic Pain Syndrome.

                  Medicines: For IC am doing PT, and will be taking Gabapentin, Ativan, Tramadol and Ambien. Ice packs and drinking vanilla shakes help. Foods that cause a flare, tomatoes, yogurt, coffee, soda, all sports drinks, and most teas. Take Verapamil, Naproxen (as needed), Omeprazole, Frova (as needed) and receive Botox shots(every three months) for migraines. For allergies I use Claritin and Flonase. (Feel free to ask me any questions about meds.)

                  Other conditions: Migraines, allergies, mild IBS.


                  "If you believe, you will receive whatever you ask for in prayer." (Matthew 21:22)

                  Comment


                  • #10
                    I pretty much take prelief with every meal unless I know for sure each and every thing I'm eating is totally safe. I even take it with the low acid coffee to make it lower. Because you're having burning I'd try taking it with each meal to see if that helps at all.
                    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

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