Announcement

Collapse
No announcement yet.

Any PFD sucess stories?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Any PFD sucess stories?

    Anyone go to PT for PFD? If so how long did it take for you to see results?
    and how much did it decrease ur IC or painfull intercourse symptoms?

    thanks
    Diagnosed with IC October 2009- through bladder biopsy (no glomerations or hunners ulcers found, just irritation)

    I have moderate-severe IC

    Currently stopped taking all medications due to pregnancy

  • #2
    I just went to a new PT this week, recommended by my urologist. I felt better, when I left the evaluation. I was walking smoother and pain free (my dog a little longer walk that night.)
    I've tried therapy 2 times before. I always felt better at the end of the sessions. But it wasn't very long lasting. Both times I stopped after about 2 months.
    I told this therapist, "I'm in it for the long term, to get some permeate relief.
    Current Medications:
    Trileptal - MS
    Amantadine - MS fatigue
    Trazadone - sleep
    Elmiron -since March 2007
    Gabapentin - pain
    Citracal - osteopenia
    Vitamin D - deficient
    Valium vaginal - as needed
    Prelief - as needed
    Fish Oil
    Metamucil

    Comment


    • #3
      I did well with PT, I can sit now and the urethral burning is gone. I was in it for 8 months.

      Suzanne

      Comment


      • #4
        Daily exercise and relaxation/meditation helped me a lot as it relieved my over-all muscle tension.

        Comment


        • #5
          thanks for ur responses. I will likely start after lap surgery this month.
          Diagnosed with IC October 2009- through bladder biopsy (no glomerations or hunners ulcers found, just irritation)

          I have moderate-severe IC

          Currently stopped taking all medications due to pregnancy

          Comment


          • #6
            I was in PT for 4 months, and feel like I had some pretty drastic results. Before PT, I was unable to leave bed for long periods of time... it hurt too much to move, or even sit up. I had been like that since the onset of my IC... so about 5 months. After completing the first month of PT, I was able to resume a part-time in-office work schedule. After the full 4 months, I was able to resume my normal life, and have pelvic pain only around my period. I do not, nor have ever had, pain with intercourse.
            Symtoms started July 2010.
            Severe pelvic floor pain only.

            2 time PT graduate!
            In medical remission since August 2011; able to eat and drink anything I want currently.

            IC meds:
            200 mg Elmiron in the morning
            100 mg Elmiron @ night
            Macrobid after intercourse

            03/11 07/11 01/12
            If at first you don't succeed: 07/26/2013!

            Comment


            • #7
              I am in PT right now for vulvodynia and IC. Although both treatment plans are similar. I love where I go. I had a choice to pick between 3 places and I choose Cindy and Paul because they are amazing. They made a careplan for me. Paul sees me for my muscle inbalance and Cindy does the biofeedback. Hasn't helped yet with pain w/ intercourse but I still have 2 months left. I have been to PT many times before and it is important to find a good team. Cindy is working with me on good bladder habits and bladder retraining. It is helping with my frequency and urgency. If u have any questions I would be happy to tell you some of the exercises I do (they are very easy)
              Diagnosis: IC '09, vulvodynia '10, fructose intolerance '06, GERD '06, fibromyalgia '09, IBS '10 and TMJ '09, PCOS '11, genital herpes '12

              Current Meds: Butrans patch, welbutrin, lamictol, geodon, xanax, aldactone, linzess, topimax, trazadone and diflucan as needed.

              Meds tried before: Elmiron, elavil, antibiotics, welbutrin, cymbalta, prozac, nerve blocks, instills, nyastatin, flexerol, percocet, naproxen (which was what I was given for pain for years).

              Comment


              • #8
                I have recieved several private msg's regarding my PT exercises so I am going to post it on here so everyone can see and hopefully benefit.

                (these are handouts given to me to help with my therapy)

                The goal of bladder retraining is to return you to a more normal and convenient pattern of urination. Research studies have demonstrated that people who experience urinary urgency, frequency and excessive nighttime urination can show great improvement with this retraining technique. This process can take up to 6 weeks. The problem includes education about bladder function and urge control, record keeping, following a schedual of urinating (voluntary emptying your bladder) and follow up apt with your health care provider.

                Controlling the urge to urinate: These are several techniques you can use to delay urinating when you feel the urge before your schedualed time.
                -try and distract yourself by thinking of complex tasks or something especially happy
                -Do some belly breathing to relax your nervous system
                -Do some quick contractions of the pelvic floor muscles (like squeezing your vagina)
                -Think positive thoughts about controlling your bladder

                Helpful hints:
                -use your urge control to avoid leakage or urination outside your times schedual.
                -Never rush or run to get to the toilet when its time to go. Always feel "in control" when you stand up and go to the toilet.

                Tips for success:
                -avoid foods and beverages that irritate the bladder.
                -Drink at least 4-8 glasses of water a day.
                -Avoid going to the toilet "just in case" These turn into bad habits and lead to more frequent urination.

                The goal is to urinate every 3-4 hours. The urge feeling needs to be suppressed on a consistent basis, be patient and stick with the program. Setbacks are not uncommon.

                Home exercise program:

                You can perform these all at once or throughout the day. They can be done lying, sitting and standing. Make sure you are using the right muscles when you are trying to squeeze your pelvic floor. Some people use their hips, clench their teeth, hold their breath. Many people often use their stomach or abdominal muscles when attempting to squeeze their pelvic floor muscles. Every time you tighten your stomach, it actually puts more pressure on the bladder.

                Exercise 1: quick squeezes
                Squeeze your pelvic floor muscles very fast and hard. Wait for 10 seconds and repeat. I do 60 of these a day.
                Exercise 2: held contraction
                The second exercise is a held contraction. Rest for 10 seconds then squeeze for 10 seconds and repeat. I do 30 of these a day.
                Exercise to control urge:
                To reduce or eliminate the urge to void, use your pelvic muscles by squeezing quickly several times (5-7 times) without relaxing completely between squeezes. Repeat until the urge subsides. (this can take weeks to start working so dont give up )
                Diagnosis: IC '09, vulvodynia '10, fructose intolerance '06, GERD '06, fibromyalgia '09, IBS '10 and TMJ '09, PCOS '11, genital herpes '12

                Current Meds: Butrans patch, welbutrin, lamictol, geodon, xanax, aldactone, linzess, topimax, trazadone and diflucan as needed.

                Meds tried before: Elmiron, elavil, antibiotics, welbutrin, cymbalta, prozac, nerve blocks, instills, nyastatin, flexerol, percocet, naproxen (which was what I was given for pain for years).

                Comment


                • #9
                  Just curious, I have some serious pelvic floor dysfunction issues. I have been recently told to start bladder retraining too. My paperwork stated to do Kegel exercises. My muscles are already extremely tight. Would kegel exercises loosen these muscles or make them tighter?

                  Comment


                  • #10
                    PT Sucsess

                    I have been in what I guess you could call PT for 5 months I have been suffering with Vulvodynia for about 9 and IC symptoms for around 5 months. I had seen little improvement with the PT for intercourse pain (using dilators helped) until I went for intensive treatment.

                    I recently came back from an intensive therapy 4 days in Adalaide. Teqniques included miofacsial release, trigger point work, massage and stretching. My ureather and clitoris had become increasingly sensitive and frequency was a problem. I also got a burning sensation in my bladder. During my time in Adalaide I received 2 2 hour sessions an day for 4 days working on the tight muscles and sore points including my lower back, hips and glutes. By the end of the 4 days I felt 75% better!

                    after the first week back home (because I had my period and some pretty bad hemorrhoids and fissures because of the PFD I am guessing) - I did not think I had progressed much at all and was very disappointed. However, for about 2 and a half weeks now I have felt the best I have since this all started. I am on laxatives for 1 month to give the fissure time to heal, I have no clitoral or ureather pain (these trigger points were worked on with the help of lidocane) frequency is still a bit annoying (once an hour compared to once every 20 minutes before intensive treatment) I have no anal pain. I have some pain with sitting but it doesn’t cause me to have to stand up all the time as before.

                    Sex is about 50% better, I am over the moon with this. My partner helps every night with stretching and trigger point work (he has become very good at this - he was shown while in Adalaide exactly what to do) I am also following low acid diet , taking endep 20mg I don’t think it's helping anything but the nerve pain in my hands and feet - and doing yoga. Yoga has been the best thing for my back hips, I practice every day. Another tip I would like to share with anyone suffering from PFD - I feel I have the least pain with intercourse when I have a warm bath for about 20 minutes then do my internal massage then use a very small vibrator on the lowest setting, it seems to relax and massage the muscles (like one of those massage chairs)

                    I hope to continue improving - I hope the success holds out. Any questions or if I can help anyone with anything please ask.

                    Claire
                    TMJ Dysfunction 2009
                    Vulvodynia and/or PFD 2010
                    IC, based on symptoms alone 2010.
                    PCOS March 2012

                    8 month remission following the birth of my beautiful daughter Imogen Rose 25/12/12....currently flaring and hoping to get remission back, life without IC was amazing!

                    Currently using: IC Diet...pain meds as needed
                    Medications / treatment tried and discounted:
                    Fluconazole 150mg 1 per week for 6 months (yeast)
                    Endep 25mg - 4months
                    Lyrica 75mg - 2 months - FLARE
                    Oxytrol patch - I think this caused retention.
                    Countless creams, lotions and potions.
                    Cystoprotek - no change in symptoms
                    PT - for 1 year
                    Various herbs and supplements

                    Comment


                    • #11
                      Just an update...

                      My biofeedback is going great. My nocturia is down to once a night!!!! Last night I slept through the whole night My pain is getting better and I've only been going for 5 weeks and I've already achieved all the goals Cindy set for me. I would defiantly look into getting biofeedback. Cindy did say though that it wont help everyone. If anybody lives around the toledo area and wants to know where I go just let me know.
                      Diagnosis: IC '09, vulvodynia '10, fructose intolerance '06, GERD '06, fibromyalgia '09, IBS '10 and TMJ '09, PCOS '11, genital herpes '12

                      Current Meds: Butrans patch, welbutrin, lamictol, geodon, xanax, aldactone, linzess, topimax, trazadone and diflucan as needed.

                      Meds tried before: Elmiron, elavil, antibiotics, welbutrin, cymbalta, prozac, nerve blocks, instills, nyastatin, flexerol, percocet, naproxen (which was what I was given for pain for years).

                      Comment


                      • #12
                        thats great! Im going to start PT. A couple of weeks after my surgery. Im starting to wonder if I had PFD first then got IC. I started having symptoms after a UTI. I was reading some stuff doctor moldwin wrote about the afects uti's can have on the pelvic floor specifically. I suffer from nocturia also.
                        Diagnosed with IC October 2009- through bladder biopsy (no glomerations or hunners ulcers found, just irritation)

                        I have moderate-severe IC

                        Currently stopped taking all medications due to pregnancy

                        Comment


                        • #13
                          Valerie,
                          You shouldn't be doing Kegels until your pelvic floor muscles have lengthened and become stronger, and maybe not even then. Doing them when you're still in pain will only make everything worse. Trust me....I've been there. I did Kegels for months before learning that they aren't good for an IC bladder, or when you have PFD.
                          ----------------------
                          -Amanda
                          34 years old, bladder symptoms all my life
                          diagnosed with PFD and VV October 2009; IC May 2010

                          Current meds:
                          Cystoprotek 2 pills twice a day, Hydroxyzine 10 mg, Gabapentin 600 mg, Myrbetriq 25mg, Zoloft 25 mg, Mircrogestin, capsaicin cream (for vulva)
                          Other past treatments:
                          IC diet, physical therapy, Traumeel injections as needed, TENS unit, heating pad, instills with sodium bicarb, lidocaine, and mucosa compositum
                          Tried and didn't work:
                          Pyridium, Singlair, Nortriptyline, Elmiron, lidocaine and heparin instills (worked at first, then didn't anymore), various creams, acupuncture

                          Comment


                          • #14
                            Amanda is right, Kegels are not recommended for us at all. Our muscles are already tight, we need them to relax. If you read the AUA recommendations for treatment it even states specifically that we are not to do kegel.

                            Gina,
                            What you are describing sounds a lot like a kegel type exercise. Am I misinterpreting them? Maybe you are further along in your treatment and can do that type of exercise.

                            I have been to pt as well (very anxious for new ins. so I can go back) I think that sometimes we all need different types of exercises so I would caution some on doing someone else's recommended exercises as their muscles may require something different that someone else's do. My PT sounds very different from what Gina describes which leads me to think that even more, as obviosly my treatment probably wouldn't help her but did help me. There are some good books sold on this site that have some great at home exercises that are generally safe for us.
                            Link to the patient information, everything from What is IC? to Disability
                            http://www.ic-network.com/patientlinks.html

                            American Urological Association Clinical Guideline
                            Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
                            http://www.auanet.org/content/guidel...ent_ic-bps.pdf

                            Comment


                            • #15
                              yes they are kegal exercises. I asked Cindy about it because I read that we shouldnt do them. She said they help some and some they dont. For me, it is helping. Cindy said by wearing the muscles out by using them they relax. I do believe since I do the biofeedback where she watches on a screen and can see if im using the right muscles, this is different than some kegal exercises that other patients may have done. She watches me to make sure I do the exercises right.
                              Last edited by ginaaa22; 03-10-2011, 03:26 PM. Reason: add more
                              Diagnosis: IC '09, vulvodynia '10, fructose intolerance '06, GERD '06, fibromyalgia '09, IBS '10 and TMJ '09, PCOS '11, genital herpes '12

                              Current Meds: Butrans patch, welbutrin, lamictol, geodon, xanax, aldactone, linzess, topimax, trazadone and diflucan as needed.

                              Meds tried before: Elmiron, elavil, antibiotics, welbutrin, cymbalta, prozac, nerve blocks, instills, nyastatin, flexerol, percocet, naproxen (which was what I was given for pain for years).

                              Comment

                              Working...
                              X