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  • anyone flare worse from therapy

    Hi All! I have had at least 4 visits for theray for PFD. I have been in pain all week. Is this how it is going to be? My pain level has been about 7-8. I thought (ok... hoped) it might be uti but my test with my GP was negetive. they called in norco for me. it took the edge off, i am about a 5 right now. I am having a lot of rectal pain (sorry). This last time with pt she did a lot of work on me.
    my pain has been increasing each week 3 with this.
    Will it ever get better? any experiences out there with this? Did you go thru a bad period and did it then get better? is there a point where you say enough? my uro wants me to do this 8 times total before she will see me. what if i just can't go thru this pain that long?
    mom to 3 wonderful kids


    IC symptoms 7/03,
    hysterectomy 11/04,
    prolapse cervix 7/07
    diagnosed: IC 2007
    IBS 2008

  • #2
    I'm sorry that you're feeling so horrible Charmed. I don't do physical therapy so I can't answer your questions but I just felt so bad that you're hurting so much that I wanted to give you (((((((((hugs))))))))) and I hope you feel better soon.
    Christine



    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus

    Comment


    • #3
      thank you. I am feeling better pain is about a 4 it started to get high again about a 7. so I took another pain pill so I am really fuzzy. My husband is so good. he is taking care of everything. my neice & nephew are coming over to spend the weekend (11 & 13) so we will have 4 kids but he is up to taking care of everything. I hope that my pain doesn't go back to where it was earlier I have to work tomorrow! 730-5 yuck!
      mom to 3 wonderful kids


      IC symptoms 7/03,
      hysterectomy 11/04,
      prolapse cervix 7/07
      diagnosed: IC 2007
      IBS 2008

      Comment


      • #4
        Hello,

        sorry you are in pain, but i can relate. After my first PT session I thought i was ruined for life! but i talked to my PT and she changed some of my stretches, and now goes slow with me to see how i will react to each session.

        Can you take a muscle relaxer after your PT? are you doing internal or external?

        hang in there, but i would mention your pain to your PT.


        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


        • #5
          Right now we are doing both external & internal. She did more work this time. I will have her back off on everything. I think (if this makes sense) I want to do whatever it takes to get better but I am realizing need to take it slow.
          while I have exams (sorry) or even sex I don't always feel it at the moment (the pain) it is afterwards. So maybe that is my problem. I just don't know.
          Will it get better? When do you say enough? how long until you felt better?
          mom to 3 wonderful kids


          IC symptoms 7/03,
          hysterectomy 11/04,
          prolapse cervix 7/07
          diagnosed: IC 2007
          IBS 2008

          Comment


          • #6
            The first 2 PT visits I thought I was going to die. Told her just can't take the pain from some of it so we stopped doing that. Maybe doing the internal and external (don't know what that one involves) is what you shouldn't be trying. Ask her if there is something else. My PT was thinking about doing the stim thing internally but she is holding off for now because of the pain I have. Right now when I leave PT my pain is worse but I take the darvacet when I get home and then my mind/quieting time and the pain level goes down more then what it was when I arrived. Hope you find something that will help out. I have found there are more then just one certain type of PT treatments.
            Last edited by waterflow; 04-29-2007, 02:49 AM. Reason: typo

            Comment


            • #7
              Make a "frosty". It helps me since I get really sore.

              Ingredients:
              1 condom-unlubricated
              ky lubricating jelly
              Rubbing alcohol

              Open condom and squeeze about 1/4 c of ky into it. Top that off with about 1 tbsp alcohol. Mush that all up and then tie a knot at the end. Place in a ziplock bag and then in the freezer. Use it on the external genital area, and maybe even a small portion of the internal. This really helps the burning. My pt made one for me and it is fantastic.

              Erika
              IC diagnosed officially via cysto/urodynamics 1/26/07

              Grade II Endometriosis diagnosed via lap 12/11/07

              "Fall down seven times, Stand up eight."

              "Life is a tragedy for those who feel and a comedy for those who think."

              Current Treatments:
              Interstim Since 5/25/07!
              Birth Control

              Comment


              • #8
                What is the internal PT like, what does it entail? I am going for PT in a week and just want to be prepared. I also have alot of stomach issues, so I am going to tell the P-therapist right from the get go what she is not going to be doing as I am not going to risk getting worse with my motility issues.
                Jen

                Comment


                • #9
                  She does internal massage to pelvic muscles. to me it is like going in to GYN for a pelvic.
                  mom to 3 wonderful kids


                  IC symptoms 7/03,
                  hysterectomy 11/04,
                  prolapse cervix 7/07
                  diagnosed: IC 2007
                  IBS 2008

                  Comment


                  • #10
                    Kegels really triggered off bladder spasms for me. PT went a lot better when we eliminated those. I only did external. I got a UTI/kidney infection right after the internal exam, so I refused all internal work after that. Overall the PT was very helpful. But there have been several exercises we tried & dropped when they made me worse. (The kegels were by far the most problematic)
                    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!

                    Comment


                    • #11
                      I didn't do internal, did alot of other exercises., they killed me. I would cry for two days after, (I was with another URO at time and called for some pain relief and they refused), that is when I switched URO and went to new one crying again about PT, she wrote me pain meds/valium and said to try two more. I did and graduated from pt, but not without a lot of pain. I don't think it really helped me. But in order to continue getting treatment, I try these things, so they (drs. don't give up). I just got a invitation that my urology group is giving for a free seminar for women with pelvic pain, painful intercourse, etc. I laughed at the end of the invite, wine and cheese will be served. ha ha. I guess us IC'ers will drink water. But I am going, hoping to meet someother women that have IC.

                      Comment


                      • #12
                        yes, yes and yes! I had five months of PT - gave it the old college try - and have been suffering for eight months. Can't get it to quiet down. Hip, back pain, but still have the tight pelvic floor. Sooooo frustrating - hope it can help you!
                        Stephanie

                        Comment


                        • #13
                          Oh my gosh, I had no idea that they actually do internal PT. That just does not sound right to me. I mean, they would have to be very very trained to do this,( maybe a doctor) and like Kadi said, I would not want to risk getting an infection. There have got to be better types of excerise that they can do externally. I have Vulva vestibulitis, and I dont even have sex because of the pain I have down there. There just is no way I am having anyone put there hands in me down there. Plus, I got bacterial vaginosis about three months ago after having several pelvic exams within a month period. I have never had bacterial vaginosis before in my life until then, so I totally think it was from that. The other day I went to see the fill in for my regular PCP since mine was out of town, since I have been having some discharge down there. Anyways, the doctor was going to do a pelivc exam, and just before she was going to do it, she was opening the doors to the cabinets and touching the desk drawers and was not even going to put a clean pair of gloves on. I had to say something. I just asked he if she could please make sure that her gloves were latex free. So she did ckeck the box and put a different one on.
                          Anyhow, getting an infection would be a big worry for me as far as the PT goes.
                          Jen

                          Comment


                          • #14
                            I guess it took me about 3 weeks of external PT before i saw improvement.

                            I canceled my 2nd PT appt and just cried at home, i was going to give up and just when i was giving up the pain subsided from the first PT session. And i saw a bit of improvement with walking.

                            I held off on internal PT as long as I could, i too have VV and it is painful, BUT i use lidocaine before my internal PT which does help. I just go into the bathroom and apply it.

                            Believe me I was one of the tough VV cases and i feared getting the internal, but my PT is great, so that really helps too.

                            I have to say the internal PT really released a lot of tight muscles, and I now can insert a supository, could get an internal exam. Before it was just so beyond tight, not even a q-tip could enter.

                            Im also on capsaisin cream for the VV and it has helped tremedously.

                            As for infections- I am also wondering about this, since i was told i have a yeast infection....I think it may be from PT since i didnt have one at all this year until i started PT. They use a anti bacterial cream and i think this upsets the Vaginal PH. So, im trying to figure out something that can counteract this. Maybe a vaginal probiotic or something, i dunno. Im going to ask my PT today when i go.

                            So far with PT, i can lay on my side without it feeling like my hip is being pulled down to my butt (very painful).

                            My urine stream is stronger, I dont have the trickle in the morning(for a month now) My urethra burning is less, I walk better with little vulva rubbing.

                            the home stretches are easier to do, I dont hurt all that much after PT, and can do more on the Eliptical.


                            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


                            • #15
                              Ok, what exactly are the symptoms of PFD? The only issues I have is pain and burning in my bladder, which is because the inside of my bladder is Very red an inflammed, at least that is what the urogyne who diagnosed me said and what the pictures showed that were taken when I had a regular cystoscopy which Dx my IC.
                              I dont see how doing PT is going to take down the inflammation and irritation that is inside my bladder. Is this what PT is suppose to be for? I dont get that. How can some one pressing inside your vagina help with the surface irritation of the inside of the bladder? Please can someone enlighten me?
                              Jen

                              Comment

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