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PFD and urethra burning, could it be helping

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  • PFD and urethra burning, could it be helping

    For the last three days I havent had urethra burning, or burning with urination, i feel normal. It feels so good to pee without the pain. I just wish i knew why i was feeling good.

    I noticed that it feels like it did before i got the IC and PFD, feels like im peeing more smoothly if that makes any sense.

    Ive been doing my stretches, but i guess this also could be hormonal, since i have the montly egg white dischrge i get before my period.

    Oh and i could walk today without burning or any vulvar and urethra rubbing pain

    I sooo wish this good feeling could last.


    Lyme disease diagnosed 11/05
    vulvar vestibulitis diagnosed 2/06 -worst case she has ever seen..very bad.
    IC diagnosed with hydro/cysto- may 17, 2006

    Over growth of lactobicilli found 8/07 treating with doxy.

    Was able to get my first internal exam evaluation for PFD....wohoo 1/18/07:woohoo:

    8/22/07- was able to get my first speculum exam, with pap

    Strep D found in bladder with United medical labs May 2006
    2 strains of strep in stool culture 9/06
    high Strep ASO titre found 10/06

    NEW MED

    Capsasin cream-once a day for 20min,
    BUt wont lie it does burn

    About to start valium supositories for PFD

    Trigger point injections- oct 07

    Current meds:
    Neurontin- 100mg at night supposed to work up to 300mg if i can tolerate it
    Zanaflex 2mg
    IC and low oxalate diet, no sugar diet
    Xanax for appointments to help relax me since they cause so much pain

    Started PT 3/07, PT has really helped me in ways I never knew that it would

    Meds ive tried
    Lyrica
    Klonopin
    Singulair
    Claritin
    Pyridium
    Soma- can barely tolerate half a pill
    Atropine cream- didnt seem to work, although i found out I was applying the creams wrong
    Estradiol cream
    Urelle- caused worse bladder spasm and retention

    Various antibiotics for lyme which caused yeast and made the IC and VV worse

    waiting for the next chronic illness to pop up


    "Did you know?
    Every 15 seconds,
    a person is
    diagnosed with
    interstitial cystitis."
    Source: J. Dimitrakov, MD

  • #2
    OMG I love days like that when I am pain free w/ no pain meds!!!!!!!!

    ENJOY IT!!!!!!!!!!! I hope it lasts forever for you.......think remission!!

    Have a great day

    Comment


    • #3
      I hope that this is a good sign and you will just continue to feel better and better.
      Interstitial Cystitis Stomach problems
      diastolic dysfunction
      vascular insufficency of left leg
      pelvid floor disorder
      hypothroidisim
      asthma
      bread cancer - 5yrsl. remission
      swollowing difficulty
      fatigue
      lots of doctors
      lots of med.














      Keep your eyes on the Lord and he will direct your paths.

      Comment


      • #4
        Yay, mich!

        I think we both started PT around the same time, and I am seeing improvement too

        My muscle tone started out at 6.4,
        then next week was 4.4,
        then 3.7,
        then my PT cancelled one week and I felt HORRIBLE,
        then 2.4
        then 3.0,
        and now 2.8.

        Now if I could only get it down into the "normal" range (0-2)

        I'm so glad that this works for some of us!
        Best wishes
        Last edited by froelica; 03-23-2007, 07:37 AM.
        Diagnosed with IC: October 2006

        Related diagnoses: PFD, chronic back pain, vulvodynia, IBS, anxiety.

        Treatment:
        Lots of water
        Fiber, when I can remember...
        Elmiron (I'm down to 200mg per day)
        Kegels (10 sets of 10 second holds per day)
        Yoga and Pilates, each weekly
        Exercise 3x weekly

        Have tried:
        PT for PFD and chronic back pain (VERY helpful)
        IC diet (I'm not diet-sensitive while on Elmiron)

        Comment


        • #5
          When did you two start PT. Im wondering when I might feel better.
          Interstitial Cystitis Stomach problems
          diastolic dysfunction
          vascular insufficency of left leg
          pelvid floor disorder
          hypothroidisim
          asthma
          bread cancer - 5yrsl. remission
          swollowing difficulty
          fatigue
          lots of doctors
          lots of med.














          Keep your eyes on the Lord and he will direct your paths.

          Comment


          • #6
            I started in the beginning of March. I had PT today and i told her about the urethra not burning and asked if it was coincidence, and she said it was most likely coincidence........BUT then she felt one of my muscles in my right leg and she said it was very loose, so that is loosing up......and i asked could that be tied into the urethra and she said it could.

            My back is still very tight.......i tried the bike today but the way i was sitting it was hitting my pelvis and hurt. but i was able to do an excerice using the ball...my groin felt ver relaxed after. It would be nice if the burning stayed away.

            we will be trying internal in a week........i told her that my NP has a tough time with this and she said its probably due to the stirrups)all along i thought it was my position that affected her ability to exam me. we shall see.

            froelica- how do they measure your muscle tone?


            Lyme disease diagnosed 11/05
            vulvar vestibulitis diagnosed 2/06 -worst case she has ever seen..very bad.
            IC diagnosed with hydro/cysto- may 17, 2006

            Over growth of lactobicilli found 8/07 treating with doxy.

            Was able to get my first internal exam evaluation for PFD....wohoo 1/18/07:woohoo:

            8/22/07- was able to get my first speculum exam, with pap

            Strep D found in bladder with United medical labs May 2006
            2 strains of strep in stool culture 9/06
            high Strep ASO titre found 10/06

            NEW MED

            Capsasin cream-once a day for 20min,
            BUt wont lie it does burn

            About to start valium supositories for PFD

            Trigger point injections- oct 07

            Current meds:
            Neurontin- 100mg at night supposed to work up to 300mg if i can tolerate it
            Zanaflex 2mg
            IC and low oxalate diet, no sugar diet
            Xanax for appointments to help relax me since they cause so much pain

            Started PT 3/07, PT has really helped me in ways I never knew that it would

            Meds ive tried
            Lyrica
            Klonopin
            Singulair
            Claritin
            Pyridium
            Soma- can barely tolerate half a pill
            Atropine cream- didnt seem to work, although i found out I was applying the creams wrong
            Estradiol cream
            Urelle- caused worse bladder spasm and retention

            Various antibiotics for lyme which caused yeast and made the IC and VV worse

            waiting for the next chronic illness to pop up


            "Did you know?
            Every 15 seconds,
            a person is
            diagnosed with
            interstitial cystitis."
            Source: J. Dimitrakov, MD

            Comment


            • #7
              Mich- They measure my resting muscle tone with a sensor. It's placed in the vagina and it reads muscle tone, with outside sensors on my tummy, so if you clench your muscles, it goes up close to 10. If you relax your muscles it goes down. With this inside, I do kegels and relax, which slowly helps bring down my resting tone. One time I was at about a 5 or 6 when we started, then came down to about a 2 by the end of the 15 min. session.
              I've never done "internal work". I'm not sure what that entails. All I do is the kegels with the sensors and then the same object that senses muscle tension makes my PF muscles contract and relax without me doing anything.

              Big Red- I started in early February. I was seeing some major relief by the third week, but my PT was surprised by my progress, so I'd assume it usually takes a bit longer. Maybe 1 to 1 1/2 months? Also, when I had to miss a week my symptoms came FLOODING back. I'm so mad about that. Never again, I'm making sure!!!
              Diagnosed with IC: October 2006

              Related diagnoses: PFD, chronic back pain, vulvodynia, IBS, anxiety.

              Treatment:
              Lots of water
              Fiber, when I can remember...
              Elmiron (I'm down to 200mg per day)
              Kegels (10 sets of 10 second holds per day)
              Yoga and Pilates, each weekly
              Exercise 3x weekly

              Have tried:
              PT for PFD and chronic back pain (VERY helpful)
              IC diet (I'm not diet-sensitive while on Elmiron)

              Comment


              • #8
                Was my PT does interal manipulation of the muscles we don't use stirups. Both knees are bent and spred apart with one on a pillow resting against the wall and one resting on her which is held by her free hand. I hope this isn't to graphic but I also hope it helps.
                Sounds like you PT has you doing alot of exercise also. I try to do 45min. of pool arobics (PT didn't order this), She has given in the past week 5 more exercise to do. Some stretching some strengthining. Some are 1-2 x a day and some our 4 x a day. I am giving it my bes shot. I have been doing this only two weeks. Yesterday in our conversation I got the impression that I will be doing this with her for a good period of time.
                Last edited by Big Red; 03-23-2007, 12:01 PM.
                Interstitial Cystitis Stomach problems
                diastolic dysfunction
                vascular insufficency of left leg
                pelvid floor disorder
                hypothroidisim
                asthma
                bread cancer - 5yrsl. remission
                swollowing difficulty
                fatigue
                lots of doctors
                lots of med.














                Keep your eyes on the Lord and he will direct your paths.

                Comment


                • #9
                  Glad PT is working for some of you. I have had WORSE symptoms since starting PT. I stopped PT over two months ago and still can't get things to settle down. Like everything else it - things work for some and not for others. I'd just like no hip, pelvic and back pain.

                  Comment


                  • #10
                    I'm sorry to hear that rosesitty.
                    It's so true that each person responds to different treatments in different ways. For me, PT relief came after half a year of trying literally EVERYTHING recommended for IC. Absolutely nothing helped and I was beginning to think nothing ever would. I think there is at least one good treatment for each of us, we just have to figure out what it is!
                    Diagnosed with IC: October 2006

                    Related diagnoses: PFD, chronic back pain, vulvodynia, IBS, anxiety.

                    Treatment:
                    Lots of water
                    Fiber, when I can remember...
                    Elmiron (I'm down to 200mg per day)
                    Kegels (10 sets of 10 second holds per day)
                    Yoga and Pilates, each weekly
                    Exercise 3x weekly

                    Have tried:
                    PT for PFD and chronic back pain (VERY helpful)
                    IC diet (I'm not diet-sensitive while on Elmiron)

                    Comment


                    • #11
                      The only thing that I am tired of is all the abdomenal exercies that I have from the PT to do. I feel with my water aerobics every moorning and the PT exercises thats all I do. I guess if I all comes to good thats wonderful. I just get so tired.
                      Interstitial Cystitis Stomach problems
                      diastolic dysfunction
                      vascular insufficency of left leg
                      pelvid floor disorder
                      hypothroidisim
                      asthma
                      bread cancer - 5yrsl. remission
                      swollowing difficulty
                      fatigue
                      lots of doctors
                      lots of med.














                      Keep your eyes on the Lord and he will direct your paths.

                      Comment


                      • #12
                        as crazy as this sounds, have you tried changing you toilet paper?
                        My mom and my aunt also have IC, they went to the Casino, and now bot are burning and have pain. The TP there is like wiping with sandpaper, that is the only thing they can come up with for the reason.
                        'The will of God will never take you where the Grace of God will not protect you.'

                        Comment

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