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  • Urethral Urgency and Frequency

    I was diagnosed with IC when I was 25. I am now 40. In the last year, I have been having increasing bladder/urethral urgency. It feels like my urethra is irritated and that is where I feel the pressure. I had a hydro last month which did not help but in fact made it worse. This was 6 weeks ago. I do not have infection according to my doctor. I feel like I have to pee all the time. When I do go, afterwards I feel an uncomfortable burning and an even more intense urge to go. Does anyone out there have this? Have you found anything that helps other than diet, Prelief, and alkaline water? I am so miserable.

  • #2
    Have you tried Azo? Sometimes when I get the feeling I have to go right after I went, Azo helps for a while. It actually helps more than any pain med for that particular feeling.
    Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
    Lexapro-20 mg
    Aciphex
    Ambien-as needed
    Percocet-7.5 up to 3 per day as needed
    Valium-10 mg x2 per day
    Phenergan-1 at night
    Prelief w/everything
    Now recovering from acute pancreatitis

    Currents treatments that help somewhat:
    Heating pad
    Hot baths
    Ice
    Being VERY still while lying down with legs elevated

    Comment


    • #3
      My experience with Azo is that it irritates my urethra more. I took UTA (blue pill) after the hydro but had a reaction of facial flushing with it. I have been hesitant to take it again but I'm about to pushed to do it anyway. Thanks for your reply!

      Comment


      • #4
        Sometimes when I get that way I will drink two big glasses of water to flush out my bladder. Sometimes I'll put 1/2tsp of baking soda in the glass. That usually calms it down for me.
        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


        • #5
          If you can't do the baking soda, try tums to cut down on your acidity. How has your IC been during the years you have had it. Many flares? What is your main symptom? Sorry to ask so many questions I am just interested in knowing how it is with people that have had it for a while. I was diagnosed 3 years ago. What is your treatment regimen if you don't mind me asking?

          I hope you are able to get the burning under control. There are several of the meds that turn your urine blue,maybe a different one with a different make up of meds and fillers might work better for you. I would talk to the pharmacist and see if they can find one that is slightly different.
          Sandra
          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


          • #6
            Urethral burning has always been my worst symptom over the course of having IC for the past 23 years. I sleep with ice packs at night. It's the only way I can fall asleep most nights. The burning is worse after sex, and with, and after, a UTI. It is always the last symptom to calm down.

            The Cystoscopy with Hydro made me miserable for weeks afterwards. I thought I'd never be able to get back to the minimal burning again.

            And catheters (sp?) are just as bad for setting me on fire. I will never let anyone put one in again.

            My regimen of meds for IC are:
            50 mgs. of Atarax at bedtime
            15 mgs of Enablex at bedtime
            50 mgs. of Tofranil at bedtime and 25 mgs. in the mornings
            Urelle up to 4 times per day
            Estrace Cream --- 2 grams, 3 nights per week

            Supplements:
            Calcium
            Magnesium
            Glucosamine
            Chondroitin
            MSM
            Fish oil

            I do use baking soda in water as needed. I used to have to take it almost every day.

            I make sure that I completely empty my bladder each time I void. When I think I'm done, I relax to a count of twenty, do a Kegal, and then try to void again. I almost always go a little bit more.

            Drink lots of water to keep your urine from getting too concentrated and acidic.

            Stick closely to the IC diet when you're in a bad flare.

            Don't wear tight jeans or anything else constricting when you're in a flare.

            I pray that you get some relief soon. I hate it when a flare takes over your life. It is so miserable, and you never know when it's going to end. (((hugs)))

            Comment


            • #7
              Originally posted by sailawaygrl View Post
              If you can't do the baking soda, try tums to cut down on your acidity. How has your IC been during the years you have had it. Many flares? What is your main symptom? Sorry to ask so many questions I am just interested in knowing how it is with people that have had it for a while. I was diagnosed 3 years ago. What is your treatment regimen if you don't mind me asking?

              I hope you are able to get the burning under control. There are several of the meds that turn your urine blue,maybe a different one with a different make up of meds and fillers might work better for you. I would talk to the pharmacist and see if they can find one that is slightly different.
              Sandra
              Thank you for your reply. It makes me feel so much better to know that I'm not a oddball with this particular symptom. When I was first diagnosed with IC, I suffered miserably for 2 years. I then started Elavil which helped so much. Over the years, I have had alot of flares. Over the past year, it has been an ongoing thing. That's why I had my 3rd hydrodistention thinking it might help but it actually made the urethra worse. I will say I'm not having as much bladder pain though. As for my treatment regime, I tried Elmiron but it made things worse. I've also tried various herbal treatments with no success. So for the last 6 years, I have been taking Elavil and Atarax (hydroxyzine) at night. I take baking soda w/water as needed when I can't stand it anymore. And the occasional UTA (blue pill). I never had a reaction to it before until this last hydro. I took the generic. My doctor gave me an Rx for Urelle this time and I will try it and see if the formulation makes a difference. I'm also about to see a physical therapist who does pelvic floor therapy. I'm hoping this will help.

              Comment


              • #8
                Originally posted by Tuckersmom View Post
                Urethral burning has always been my worst symptom over the course of having IC for the past 23 years. I sleep with ice packs at night. It's the only way I can fall asleep most nights. The burning is worse after sex, and with, and after, a UTI. It is always the last symptom to calm down.

                The Cystoscopy with Hydro made me miserable for weeks afterwards. I thought I'd never be able to get back to the minimal burning again.

                And catheters (sp?) are just as bad for setting me on fire. I will never let anyone put one in again.

                My regimen of meds for IC are:
                50 mgs. of Atarax at bedtime
                15 mgs of Enablex at bedtime
                50 mgs. of Tofranil at bedtime and 25 mgs. in the mornings
                Urelle up to 4 times per day
                Estrace Cream --- 2 grams, 3 nights per week

                Supplements:
                Calcium
                Magnesium
                Glucosamine
                Chondroitin
                MSM
                Fish oil

                I do use baking soda in water as needed. I used to have to take it almost every day.

                I make sure that I completely empty my bladder each time I void. When I think I'm done, I relax to a count of twenty, do a Kegal, and then try to void again. I almost always go a little bit more.

                Drink lots of water to keep your urine from getting too concentrated and acidic.

                Stick closely to the IC diet when you're in a bad flare.

                Don't wear tight jeans or anything else constricting when you're in a flare.

                I pray that you get some relief soon. I hate it when a flare takes over your life. It is so miserable, and you never know when it's going to end. (((hugs)))
                Thank you for your reply. It makes me feel better that someone else suffered for weeks after a hydro, as it seems that most other people rebound more quickly. I was feeling like there was something wrong with me. I do use baking soda water when needed but it's so awful and I worry about the side effects of it in my body (high salt, etc.). About to try the Urelle that my doctor gave me this week, hoping I won't have the same reaction to it that I did with the generic UTA pill. I too cannot tolerate a catheter AT ALL. I avoid them completely. Even when I had my child, my OB used a pediatric catheter on me. I have to use ice as well, particularly after sex as the burning is unbearable. Thanks for sharing your situation. I appreciate the support and am so thankful for this website.

                Comment

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