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Freedom from frequency and urgency!!!

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  • Freedom from frequency and urgency!!!

    I haven't been on this site in years. I am only coming back because I think I may be able to help others. When I was diagnosed with IC, my only symptoms were frequency and urgency. I felt like I needed to urinate all the time, even though my bladder was empty. I had NO PAIN. I tried everything. The IC Diet, Elmiron, Instillations, Interstim and physical therapy.......and more. NOTHING HELPED. I was miserable.

    In June of 2014, I went to Beaumont Women's Urology Center in Royal Oaks, Michigan. I was there for three days. On the last day my physical therapist, a pelvic floor specialist, had me roll on my side. She started pushing on my backside....my bottom. It hurt so much I almost jumped off of the table. WHAT NO ONE EVER TOLD ME.......you have pelvic floor muscles on the front and back sides of your body. I had only been treated vaginally (my front side). My PT at Beaumont found my tight muscles...in the back (not inside my rectum but outside on my bottom.) She used a technique called myofascial release. Later that day, on my 8 hour drive home, I stopped for something to eat. When I got out of my car I felt a huge release of pressure and my symptoms...the constant feeling of the need to urinate disappeared! I had no symptoms for three or four days. I went back two months later for more physical therapy. My husband came with me and learned how to do myofascial release so it could be done at home. (I could not find a PT in my area who knew what I was talking about.) To make a long story short.....it worked. My symptoms are gone. Once in a while I feel a ping of urgency but it is usually related to constipation. The urge I was feeling was my back pelvic floor muscles against my bladder. IT WAS PELVIC FLOOR DSYFUNCTION THE ENTIRE TIME! If you are suffering from frequency and/or urgency, please have this checked out.

  • #2
    Re: Freedom from frequency and urgency!!!

    Thank you for sharing your success.


    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


    • #3
      Re: Freedom from frequency and urgency!!!

      Thank you so much for coming back here and giving us some important information. I think , well I know I forget about how my orthopedic issues do affect my bladder.
      If you do have tight obturators, or spinal degen, stenosis or any other lower back conditions/pathology, then your pelvic floor is most certainly affected.

      Your post re-affirms my need to re-start my PT again. She always works on both: internal (obturator internus) and then on my spine and hip....

      I am so glad you found answers, it can be so tiring and frustrating being your own doctor.

      Best-Songbird

      Comment


      • #4
        Re: Freedom from frequency and urgency!!!

        So I am confused? Do you have IC or just pelvic floor dysfunction?

        Comment


        • #5
          Hi Kristin41,
          I sent you a private message about Beaumont... Who was your Urologist and who was your PT at Beaumont?

          Comment


          • #6
            Has anyone been to Beaumont Women's Urology Center in the last year or so? If so please let me know who you saw there... Doctor, Nurse Practitioner, Pelvic Floor Therapist....?
            I want to make an appointment and would love a little info on your experience!

            Comment


            • #7
              Dr. Ken Peters is always the first choice at Beaumont!!
              Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

              Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

              Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.






              Comment


              • #8
                That is awesome! So glad you found a "cure"!
                Diagnosed with IC in 2005, PFD in 2016. My sister has had IC for 21 years and our mother over 30. 66 years of bladder fun combined!

                Comment


                • #9
                  I do pelvic floor therapy! It’s a Godsend!

                  Comment


                  • #10
                    Originally posted by sarich99 View Post
                    I do pelvic floor therapy! It’s a Godsend!
                    Thank you for sharing your success --- I know we have members who are considering this --- your success will help them with their decisions.

                    Sending warm hugs,
                    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


                    • #11
                      Make sure you find a PT who does deep visceral pt. Donna, I’m very sorry for your loss...it’s been awhile since I’ve been on.

                      Comment


                      • #12
                        Originally posted by sarich99 View Post
                        . Donna, I’m very sorry for your loss...it’s been awhile since I’ve been on.
                        Thank you.

                        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


                        • #13
                          These are my exact symptoms. I'm seeing an NP and MD at a urogyno clinic and nothing has helped yet. I need hope. This is the worst thing ever. I've felt like I have to pee 24 hours a day for over three months. So far I've only tried medications and PTNS. the PTNS seems to help a little sometimes but the meds do nothing. I live in Texas, how could I find out where one of these places is near me, or would I have to fly across the country? I probably would if I really thought it would help!

                          Comment


                          • #14
                            I'd just like to say to the IC Network.

                            Warm hugs,
                            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


                            • #15
                              Originally posted by KitaKat View Post
                              Hi Kristin41,
                              I sent you a private message about Beaumont... Who was your Urologist and who was your PT at Beaumont?
                              I saw Dr. K Peters. However, the magic was in the physical therapy. The PT I saw was:
                              Lisa Odabachian <[email protected]>
                              Linda no longer works at Beaumont but this is how I reached her recently. The technique she was the following: It is external myofascial release to pelvic floor muscles, primarily iliococcygeus, pubococcygeus, obturator internus, the perineal body posteriorly, and ischiocavernosus and bulbocavernosus anteriorly. It was life changing. She even taught my spouse how to do the technique because we did not live in Michigan.

                              Comment

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