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  • the constant "got to go sensation"

    Hello everyone,
    I was wondering what you found the best to treat this constant sensation of having to use the bathroom...even when you know you don't. I generally walk around with this feeling 24/7 it seems. I have been on the IC diet strictly for i month now. I don't pee a ton of times a day...maybe 8-10 (usually2x at night)...and when I go, I really go. But my problem is that the "sensation" is always there and very distracting. It's bad enough during the day, but at night it literally prevents me from sleeping. I will get up to pee when my bladder is "actually" full...there is a definite difference in my bladder when I really have to go...but then I come back to bed and it's like constant feeling in my urethra/low bladder to go. Anyone had success with making this exhausting sensation go away?
    Thanks, Tish

  • #2
    Yes, that feeling is maddening!

    I find that a heating pad at night is essential, also sleeping on my side with a pillow between my knees. For me though, those things aren't enough, so low dose (10-20mg) amitriptyline has helped. Pelvic floor physical therapy also helped with that sensation. I have severe IC, so I have a lot of treatments I use, but these two are what I would ask your doctor about first.

    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!

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    • #3
      Hi, Tish ~ Just wondering if you've tried Pyridium? I know I've gotten relief from the urgency by taking it. I'm not sleeping very well myself but because I actually have to "go".

      I know there are several overactive bladder meds....Vesicare, Detrol...you might benefit from something like that.

      Hope you get some relief soon.....and some good sleep!
      Ginger
      Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found answers...so can you...keep the hope.

      11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
      8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
      8/2010 Surg gallbladder
      TREATMENTS (updated 4/15)
      IC Diet since 8/2009 (Able to vary 4/15)
      Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
      Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
      Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
      *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
      Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
      PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret

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      • #4
        I use a heating pad at night. My husband stays up later than me so he turns it off when he goes to bed. If I have time, I will also take a very hot bath before bed. I use sleeping pills like unisom sometimes. I also find that it is best to stay distracted, so I use a noise machine that makes nature sounds at night. I try to concentrate on the sound of that so I can relax enough to fall asleep. I know these are all small solutions to a big, very aggravating problem, but I hope they will help you. I hope you find some relief!
        Wife of Andrew and Mom to Asher, 8; Raina Beth, 6; Oberon , 4; Shiloh, 2; and Hava, 1

        I am a Homeschooling mom, Autism advocate, and manager of a busy household of 8.

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        • #5
          I use allergy meds or antihistamines to help control the "gotta go" 24/7 feeling. I can stay pretty busy during the day so it doesn't bother me too much during the day, but the evening/night it drives me crazy. So I take an antihistamine and I don't feel the need to go as often. If I don't take it, I'm up 4-5 times a night to use the bathroom. If I take it, then I am usually only up 1 time a night. Big difference

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          • #6
            I have the same thing. I know my bladder isn't full, so I dont go into the bathroom but I constantly feel that I have to go! Its maddening!
            symptoms when in a flare:

            I feel everything in my urethra but I know its really my bladder. Pressure, stinging, urgency,tingling feeling thats hard to describe.
            *I have a fibroid on my uterus near my bladder.

            Medication
            100mg Amitripyline ( I have seriously gained almost 50lbs on this drug but I feel it works)
            Flexoril 10mg (doesn't work)
            Hydrocodone 5/325 PRN
            Cetalopram 40mg *severe anxiety over flare

            Physical therapy hasnt really helped but I love her! I've learned so much! She states that my muscles around
            My urethra are very tight.

            currently seeing a Gyn in my town and a Uro in Seattle (4 hrs away)

            I have had lots of long term remissions. Currently been struggling with good & bad days since Jan 2012



            find me on Facebook! Brandy Schildknecht Covington

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            • #7
              Re: the constant "got to go sensation"

              What antihistamine do you take?

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              • #8
                Re: the constant "got to go sensation"

                This is an old thread so that poster might not reply but I will. Many people including myself take Hydroxyzine. As another poster also stated above Amitriptyline also helps

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                • #9
                  Re: the constant "got to go sensation"

                  I accidentally found out that OTC Allegra helped.My uro PA had me switch to OTC Zyrtec,which was even better. Then my uro (wisely) switched me to Rx Hydroxyzine which is the most effective. I have been on it ever since. I am allowed to self adjust my dose to manage symptoms. Started at 25 mg every night and maintaining well on only 12.5 mg. I know a lot of ICers use higher doses though. A plus is how well my environmental allergies are so much better. Plus,it makes you drowsy & sleep better (hence taking it at bedtime).

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