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How common & severe, is problem with sitting (PFD) ?

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  • #1

    How common & severe, is problem with sitting (PFD) ?

    Hi
    Thanks for all best answers that I have received so far, being part of this forum. Lately I was too much occupied but I will be now starting to respond to other users too. I just have one question

    - My husband has progressive worsening PFD where he can't sit with relaxed pelvic floor even for few mins. Because of that contractions, he is facing acute bladder weakening issues. He doesn't have any frequency but 1-2 times/month he tends to get frequency during night where he needs to push while urinating & poor stream (Can it be just IC or ?)

    1. Upto what extent PFD & usage of cushions common in IC patients?. Usage of cushions relates to PNE or just IC related PFD ?
    2. Can PFD symptoms be treated upto a point where they don't have to use cushion anymore ?
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    • #2
      How common & severe, is problem with sitting (PFD) ?

      Just curious since I haven't seen anyone, taking cushions to every single place like while travel, theaters or job meetings etc

        Comment

        • #3
          I don't have PFD but I do take my IC pillow with me in the car --- I also have one I use around the house. We'll be taking our spinning wheels to demonstrate at the Oregon State Fair and I will take the pillow along to sit on.

          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

            • #4
              Usage of cushion with no PFD or in remission

              Thanks for the responses.
              If there is no PFD or remission at times, why still cushion is needed ?. Is it for PNE etc ?. If there is no remission, can it not be IC?

              Have you seen or read about people not using cushion though they have IC for rest of their life ?. What might be the percentage ?

              I am also trying to find out few forums where I can post my replies to other threads. Let me know which forum I might be able to contribute to, since I don't have spasms or bladder pains etc.

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                • #5
                  For short drives, I don't use my IC cushion if I'm feeling good. However, if I will be in the car for an hour or more, I sit on it. It's designed to keep the vibration of the moving car from causing pressure on the perineum. I have two --- one lives in our motor home --- and I think they were well worth the investment.

                  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
                      Cushions... everywhere??

                      I have a cushion... not an IC cushion yet, however, it will be my next investment. I take my cushion everywhere... driving, sitting at community gatherings, playing musical instruments. It's just what I have to do to not be in pain. I haven't been diagnosed with PFD but I have lots of trouble sitting - especially right now in this flare, I am having huge problems sitting anywhere.

                      Wizbe

                      Current Meds:
                      1 Elmiron 100mg 3x a day
                      1 Cimetidine 300mg 2x a day
                      4 Gabapentin 300mg 3x a day (3600mg)
                      1 - 2 Atarax 25mg at bedtime
                      1 baclofen 10mg 3x a day as needed
                      200mg of Pyridium 3x a day (usually do in cycles - on for a week or two as needed) - I am very careful about this.
                      2 belladonna and opium suppositories as needed for pain daily.
                      Bladder instillations (Lidocaine, Heparin, & Sodium Bicarbonate)

                      I have tried but failed -
                      lidocaine instillations, heparin instillations, oxybutynin by mouth also called ditropan, tylenol 3s with coedine, cyclobenzaphrine, Ativan, vesicare, Oxytrol patches worked for 3 to 4 years and then failed, I tried Uracyst and had some success but my urologist felt that it was not successful so we moved on to trying something else. .
                      [/I]

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                        • #7
                          Distinguish between IC or PFD or both & opinions

                          Hi,
                          I know IC can only be managed , not completely cured & other diseases can have same symptoms. In that case diagnosis of IC is not important as still same foods are to be avoided
                          - Any reliable criteria to distinguish if its IC or PFD or both. If PFD symptoms not going into remission, can that be a sign that its only PFD
                          - Any experiences regarding alternate therapies like accupuncture, ayurveda etc ?. Can things like IBS etc increase chances of IC progressing into severe stage fast
                          - I have read that IC diet shouldn't be just alkaline but 70% alkaline. How true it is ?.

                          Thanks

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