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Is this just pfd??

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  • Is this just pfd??

    During my flares: I wake up every day feeling completely fine, then about 2-3 hours later I start to feel a tight burning feeling in my urethra and after I urinate I just feel like I have to urinate again and again. This burning/frequency lasts until mid afternoon then subsides through the evening. Usually by the time I go to bed I'm feeling pretty good!

    I've never had bladder pain and my cystoscopy was totally normal. Could this just be pfd?

  • #2
    Re: Is this just pfd??

    Sounds like it could be, or maybe some urethral spasms. Often PFD gets worse as the day goes on so unusual that it would go away in the evening.
    Are you drinking coffee in the mornings and stop about lunchtime drinking any coffee??? Could this be what's causing some bladder spasms?
    UTI 3/2015
    IC ,PFD
    prescribed meds: Endep 60mg, Elmiron 400mg, BC. Enablex 7.5mg.

    Supplements: Chitomur peptide, colostrum, Echinacea, liver detox swisse, calcium citrate, glucosamine, Psyllium Husk.

    Daily diet: Breakkie- oats with chia seeds and no fat milk. Post workout-turkey breast with mixed veggies. Lunch-raw green soup with rye roll and handful of peanuts/almonds. Dinner- changes but meat and veg. Dessert-banana and sugar free custard (homemade) or banana and apple bake with almonds cinnamon and honey with a dollop of coconut cream.


    Tried: tramadol, cystoprotek, multi right, diazepam, vesicare, Ditropan, mirabegron, Flomax, lyrica, progesterone.

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    • #3
      Re: Is this just pfd??

      I stopped drinking coffee when I started the IC diet about six months ago. I am a teacher so things get pretty stressful once I get to work, so I kind of wonder if the stress of the day is what causes spasms? I tend to feel better on the weekends and then worse during the week. To be honest, I actually kind of hope this is PFD because I feel like that might be a little bit easier to treat then ic

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      • #4
        Re: Is this just pfd??

        Stress can definitely have an effect on symptoms. Also, if you're spending a lot of time standing or walking, that could increase symptoms.


        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.

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        [3MG]

        Anyone who says something is foolproof hasn't met a determined fool

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        • #5
          Re: Is this just pfd??

          Have you tried instills (Uracyst), Tramadol, Tamsulosin, Amitriptylin?...
          Def find out vaginal problems, and try for a while vaginal lactobacillus / probiotics and coconut oil vaginally. It can a bit calm the bladder as well.

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          • #6
            Re: Is this just pfd??

            I'm starting pelvic floor therapy tomorrow, and I am really really hoping it will make a big difference!

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            • #7
              Re: Is this just pfd??

              I am very sure it helps! Buy also that book, forgot now.. , about pelvic floor with exercises. So you can do some good stretching at home yourself as well.

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              • #8
                Re: Is this just pfd??

                I feel the exact same way. I live weekend to weekend because it's the only time I have relief.

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                • #9
                  Re: Is this just pfd??

                  Originally posted by krist656 View Post
                  Have you tried instills (Uracyst), Tramadol, Tamsulosin, Amitriptylin?...
                  Def find out vaginal problems, and try for a while vaginal lactobacillus / probiotics and coconut oil vaginally. It can a bit calm the bladder as well.
                  Can you tell me more about the vaginal lactobacillus/ probiotics and coconut oil?

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                  • #10
                    Re: Is this just pfd??

                    I've had 2 pt sessions so far and I've been doing the "letting go" exercises from the book "Heal Pelvic Pain" and I've had a slight reduction in symptoms. I know it'll take time to really see a difference but I think with the pelvic floor therapy I'm on the right track!

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                    • #11
                      Re: Is this just pfd??

                      My last pfd therapist was a godsend.

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                      • #12
                        Re: Is this just pfd??

                        Songbird, did it help with burning and/or frequency? How long did it take to see a difference?

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                        • #13
                          Re: Is this just pfd??

                          Yes you t does help with both. I have been in PT for over 2 years on and off now.

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