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  • Pelvic Floor Dysfunction or IC or both?

    Hello Everyone-
    I just wanted to spread my experiences. For the past 2 years I've been in and out of doctors and on various meds for the treatment of IC. Nothing was working! ABout 3 months ago, I started with physical therapy geared toward treating pelvic floor dysfunction. And you know what? It helped...a lot. I just wanted to recommend that those dealing with pain from IC search out methods for dealing with pelvic floor dysfunction. Sometimes it can be hard to tell which is really causing the problem. I have to also add that about 90% of my pain was coming from my bladder so it definitely seemed like it was IC, so like I said it can be tricky. Just keep trying and be proactive - seek out a physical therapist who does pelvic floor therapy and give it a try!! If you're in the Central PA area, I went to First Choice Rehab and worked with both Lisa Jensen and Karen Red. HIGHLY RECOMMEND these two ladies.

  • #2
    I too am beginning to feel that my PFD has caused my IC. Sex has almost always been painful for me, for as long as I can remember, so I believe I had pelvic floor problems years ago. I now go for internal and external therapy, it is slowly helping. Glad you have finally found something to help you.

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    • #3
      Thats a really good point... they can all play in to eachother.... I wouldnt doubt it for a second if I had pelvic muscles that were playing a role in te IC symptoms. Before all this I had a bad yeast infection, and found that I was always straining and putting pressure on these muscles, then the frequent urination etc happend. I would really like to find someone but im not sure if anyone knows about IC in my area. I have a drs appt on Tues so I will ask then, and hopefully find a therapist close to me. I do know of one about 2 hours away, but if I can help it id rather not do the drive. Idont really have pain, just alot of PRESSURE.. does PT help with this too Is it possible that it can help with frequency as well....
      28 yrs old,

      I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

      What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

      Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!



      Me in my graduation gown!

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      • #4
        KM, I had been have that same situation for three months when a flare started in January 2011, I went to my urologist of twelve years and they kept giving me instills ( I had six of Lidocaine and Heparin, and three of Marcaine and Solucortef). They weren't working for me at all. If anything I begain to get more and more irritated from them. I was still taking the Elmiron, Elevil, Atarax that I'd been on for 12 years with good success and was eating super bland for all this time. This flare simply would not go away.

        A couple of weeks ago I finally went to another urologist who is more convenient to where I live and, Wow, I can't believe how just having another set of eyes on me has helped. She immediately got me into physical therapy for Pelvic Floor Muscle tightness and prescribed Lorazepam to get the muscles relaxed. I really wasn't expecting anything to help at this point because I'd been in pain for so long, have lost 20 pounds and just didn't have much hope. Just those two things have enabled me to be able to function somewhat normally. I'm still not totally out of the flare but I've improved tremendously. The other doctor never even mentioned or tried to address possible PFD. My current doctor is also giving me instills as hers are different from what I've had. Unfortunately, I still don't seem to respond well to them. They irritate my bladder for whatever reason. Once I pee them out, I'm in discomfort fairly quickly. It's almost like they undo the progress I've made with the new med and the Physical Therapy. I'm ready to stop them and just see how I do with the other two therapies with no instills. It's amazing how much a good a trained in IC physical therapist can do if you have Pelvic Floor problems along with your IC. They've explained to me that for most of us, they go hand in hand. The doctor explained that PF muscle tightness and spasms can feel like burning and stinging in the bladder. Now I know it's true because what I thought was all bladder was partly bladder and partly Pelvic. Am so grateful for this new doctor who really understands IC! Good luck to you!

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        • #5
          Does PFD PT reduce diet-related symptoms?

          Hi,

          I'm 22 years old, and I am wondering if I have IC or PFD or both. I don't have any pain, urgency, or frequency unless I eat something on the no-no list (coffee, alcohol, acidic foods, etc). The flare, which feels like either an itch or a dull or sharp pain, lasts only as long as the offending substance is in my bladder. My bladder also occasionally feels temporarily irritated after I have a difficult bowel movement. I drink lots of water and have a normal bladder capacity. I would love to no longer have to rely on Prelief and be able to eat whatever I want!

          I went to a new urologist, and she said that my muscles were hypertonic and one side was tighter than the other. I went to a physical therapist for the first time today, and she said my vaginal muscles were really tight as she gave me an internal massage. I was only mildly sore in certain places. The PT gave me strengthening and relaxing exercises to do, and I plan to go back for a few more sessions.

          What I'm wondering is, does physical therapy for PFD ever reduce diet-related symptoms of IC? If my bladder is no longer irritated by PFD, will diet sensitivity be reduced? The urologist seemed to imply this would be the best-case scenario, but I'm a little confused. Any thoughts or advice is welcome!

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          • #6
            This was confusing for me also as I was diagnosed with hypertonicity of the pelvic floor with pelvic floor spasms. Later on diagnosed with PBS/IC. I was in pt for two months and after the muscles relaxed my bladder pain seemed to subside and I could (and did) eat anything I wanted including coffee, wine, tea, etc. Two and half months later however my bladder irritation returned and I think it was due to me indulging in all the diet no no's for bladder pain. I felt the pt helped a lot with my bladder problems but also felt I would need to be in pt forever to keep it at bay. One dr.felt it was all pelvic floor related causing my bladder pain and another dr. felt it was the bladder pain causing the pelvic floor spasms. I guess it's the chicken or the egg thing. I suppose if you knew for sure that it was only pelvic floor dysfunction and not IC you could most probably resume a normal diet. Then again you may not even be that diet sensitive anyway. It seems to really vary after reading all the posts here on food sensitivities.

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            • #7
              Originally posted by azuljen8 View Post
              Hi,

              I'm 22 years old, and I am wondering if I have IC or PFD or both. I don't have any pain, urgency, or frequency unless I eat something on the no-no list (coffee, alcohol, acidic foods, etc). The flare, which feels like either an itch or a dull or sharp pain, lasts only as long as the offending substance is in my bladder. My bladder also occasionally feels temporarily irritated after I have a difficult bowel movement. I drink lots of water and have a normal bladder capacity. I would love to no longer have to rely on Prelief and be able to eat whatever I want!

              I went to a new urologist, and she said that my muscles were hypertonic and one side was tighter than the other. I went to a physical therapist for the first time today, and she said my vaginal muscles were really tight as she gave me an internal massage. I was only mildly sore in certain places. The PT gave me strengthening and relaxing exercises to do, and I plan to go back for a few more sessions.

              What I'm wondering is, does physical therapy for PFD ever reduce diet-related symptoms of IC? If my bladder is no longer irritated by PFD, will diet sensitivity be reduced? The urologist seemed to imply this would be the best-case scenario, but I'm a little confused. Any thoughts or advice is welcome!
              Originally posted by earthlady View Post
              This was confusing for me also as I was diagnosed with hypertonicity of the pelvic floor with pelvic floor spasms. Later on diagnosed with PBS/IC. I was in pt for two months and after the muscles relaxed my bladder pain seemed to subside and I could (and did) eat anything I wanted including coffee, wine, tea, etc. Two and half months later however my bladder irritation returned and I think it was due to me indulging in all the diet no no's for bladder pain. I felt the pt helped a lot with my bladder problems but also felt I would need to be in pt forever to keep it at bay. One dr.felt it was all pelvic floor related causing my bladder pain and another dr. felt it was the bladder pain causing the pelvic floor spasms. I guess it's the chicken or the egg thing. I suppose if you knew for sure that it was only pelvic floor dysfunction and not IC you could most probably resume a normal diet. Then again you may not even be that diet sensitive anyway. It seems to really vary after reading all the posts here on food sensitivities.
              Hi, boy all that sounds familiar. For me, the PT has helped with the pelvic floor issue but, so far, it hasn't calmed my bladder down. The pt thinks mine is now all localized to the bladder again and for whatever reason, I'm still struggling with the pain and burning in the bladder. We're all different, though, so you may have a very good outcome from the PT. It did help me get the pelvic muscles calmed down. The PT said that their hope is that once they get that fixed the bladder will have a better chance to calm down and heal. I hope that happens for you! I think it does in many cases. It seems that mine is a food thing. I'm eating so bland that it's ridiculous and my bladder just goes crazy once I've eaten a couple of times in the day. I've lost so much weight and am not eating outragious things that would normally cause a flare. I just can't get out of it no matter what I do, so far. Good luck to you!

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              • #8
                I wonder if it's not just what is eaten during the day but just having food in the colon period that presses on the bladder nerves and irritates it. I would have bladder irritation every day at the same exact time (6:00), after I had eaten lunch and dinner. This happened even if I ate extremely bland foods for several days. After a BM the pressure would go away and my bladder would be fine! Geez- are our bladders that sensitive that even food sitting in our colon would irritate the bladder nerves? Makes me wonder though.

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                • #9
                  Originally posted by earthlady View Post
                  I wonder if it's not just what is eaten during the day but just having food in the colon period that presses on the bladder nerves and irritates it. I would have bladder irritation every day at the same exact time (6:00), after I had eaten lunch and dinner. This happened even if I ate extremely bland foods for several days. After a BM the pressure would go away and my bladder would be fine! Geez- are our bladders that sensitive that even food sitting in our colon would irritate the bladder nerves? Makes me wonder though.
                  That sounds so much like my pattern, too. I have mostly good mornings and then anywhere from 3 to 6pm my pain will start. It's always worse at night, too. And the longer I go in the day without eating the less pain I have. I do sleep through the night now due to a new med she put me on and I'm so grateful for that! Another problem is that in the middle of this four month flare, my colon and bowel system started acting up in moving too slowly and my not being able to go regularly. I actually have a hard knot that moves around the navel area that the doctor and I can feel when I'm lying down. She thinks its fecal matter in the colon. Both she and my PT say that can certainly be putting pressure on the bladder. So, now I'm on Benefiber and stool softeners to help with that. It is helping but My bladder has continued to be very tender anyway. I still wonder about food, too, though. I have trouble eating certain things that shouldn't normally bother the IC. I'm eating very bland but I do keep trying to introduce things in like pears or a little watermelon just so I will be getting more vitamins and not lose anymore weight. Every time I try them, I get in tons of pain within in a few hours. So, it's just so hard to tell what exactly is going on and how to get it all fixed. Am having a colonoscopy soon to see what's going on there and due to blood in the stool, etc. It's so hard to function normally when all of this is going on. I have to do everything basically in the morning or early afternoon hours, and I hate all the things I've had to give up due to this.

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                  • #10
                    I noticed the exact same thing- the longer I went without eating in the day the better my bladder felt. I ended up seeing my gastroenterologist who told me to use Miralax every other day to divert more water to the intestines. I've never been constipated in my life until I started on these bladder meds and it most assuredly effects my bladder. He also mentioned how drying the antihistamines are to our system, not to mention any tricyclic med being constipating. As long as I don't keep too much food in me at one time my bladder is pretty happy. As for the colonoscopy- yuck- I have to set up my appt. for this soon.

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                    • #11
                      So sorry everyone for straying from the original post thread concerning pelvic floor PT. I got carried away on another subject.

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                      • #12
                        Good luck to you!

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                        • #13
                          I am reading all your posts with great interest! Does anyone know of a good PFD therapist in the San Francisco Bay area or southern Oregon? I'm willing to travel; I live in far northern California. Does anyone know how I should go about finding someone?

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                          • #14
                            Originally posted by naturegal View Post
                            I am reading all your posts with great interest! Does anyone know of a good PFD therapist in the San Francisco Bay area or southern Oregon? I'm willing to travel; I live in far northern California. Does anyone know how I should go about finding someone?

                            Hi, I don't know of anyone personally but I live in Southern California and would be happy to ask my PFD PT and my urologist if they know of someone in your area. I will see them next week on Tuesday and Thursday.

                            Cherie in the OC

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                            • #15
                              Hi all,

                              Can someone tell me if PFD can cause frequency? I'm reading an interesting book on PFD, and I'm willing to start the recommended stretches, but the book is mainly describing pain. My symptom is primarily frequency.

                              Thanks-T
                              March 2011-Symptoms began
                              May 2011-Tentative diagnosis by OB/GYN
                              October 2011-Confirmed diagnosis -- IC/PFD

                              Current treatments:
                              Elmiron- 300 mg (Began 12/11)
                              Hydroxyzine- 50-75 mg (Began 7/11)
                              Tizabidine- 2mg 3xTID, if needed (Began 12/11)
                              IC Diet-Began 5/11
                              Pelvic Floor Therapy-Began 12/11

                              Current Supplements:
                              Cystoprotek
                              Magnesium
                              Fish Oil
                              Biotin

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