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  • Not sure about pelvic floor therapy

    Hey Gals.
    I have been having second thoughts about the PT. I started about a month ago, I have only had three sessions though so far. I have had to cancel a couple times due to having UTI or because my stomach was not well ( I have bad motility issues).
    ANyhow, I am thinking about stopping the therapy for a while. I will not do the internal as I cannot risk getting a UTI. Also, everytime I go, I end up not feeling well afterwards. The table is sooooo uncomfortable to lay on, ( I have major back pain issues and also it upsets my stomach something awful laying on that table. SHe does give me pillows and stuff to try and help with my back, but it just does not.
    Also, I am wondering if I even have PFD. I mean,I get the severe pain and burning in my bladder, but when I did the instill using the lidocaine, heperin, saline instills, it helped the pain alot. That tells me the pain is coming from my bladder, not my pelvic floor.
    I just am not sure what to do. I told my dad about it, and he said that it seems like a money making thing to him. He said it probably does help some women who have issues with incontinence, but does not think it will help with IC pain especially if the pain in is the bladder itself, which mine is.
    I also have a good friend who has had IC for 15 years. She is also totally against PT. She said in her opinion, it not good to go messing around down there, it is better to leave well enough alone.
    Just wanted your opinions. Thanks
    Jen

  • #2
    Well, I tried it and it did not help me at all. It may help some but it wasn't beneficial for me. I think I did about six or eight sessions. I have bladder endo along with IC so it is hard to tell if the chicken or the egg came first. It would be easier to treeat me if they knew for sure that my pain was coming from A-Endometriosis or B-IC. Ten years ago I was diagnosed with this horrible disease and the doc said he felt like there would be a cure in five years! Boy was that ever false hope!!!!!!!!!!!!!!! The whole thing is maddening to me. Can you tell today hasn't been a good day? Okay, back to the PT thing. I would give it a good shot but if it doesn't work then I would forget about it and move on to plan B. -Vicki
    Blessings and Hope

    Current Meds.
    OFF MY MEDS
    Vivelle Dot: .10 changed every 72 hours
    Compoounded Progesterone 25mg/night

    Current Supplements
    Hydroeye: 2 pills AM

    Diagnosed
    1995: Endometriosis
    1998: Interstitial Cystitis
    2006: Bladder Endometriosis, Total Hysterectomy and Bowel Re-Section
    2008: Removal of Ovarian Remnant and Endometrial Cyst That was Obstructing Ureter
    2012: Laparoscopic Removal of Adhesions and Staples

    Comment


    • #3
      I think that it probably depends on your pt. I have been blessed to have a really good one. Also, a lot of ICers seem to have pelvic floor problems along with IC bladder problems. I fought going to pt for a long time, but am glad I eventually went. Sometimes I do hurt after a session, but in the long run it helps me. Mine mainly works on doing trigger point release which seems to be a big help for me. There were some of the lectures on this site which helped me to realize that a lot of my bladder pain was triggered by PFD or vice versa. Maybe you could try reading some of them before you make a final decision. Hope you feel better soon.

      Janice

      Comment


      • #4
        For me, it's been really helpful. But, the physical therapist I see is one that my doctor at Stanford referred me to, who has been trained specifically in pelvic floor issues. I also do not do internal work. She works on the muscles in the low back, adductors, rib cage.

        The physical therapy is helpful with frequency, constipation, and the pain I get when exercising, driving or riding in a car. Even though I am greatly helped by instillations, this physical therapy has helped further. I sometimes come home with muscle soreness after the appts, but overall I have greater freedom of movement & less pain. When I first got IC, I didn't have muscle issues, but after 4 years of IC, my muscles have developed stiffness & soreness from inactivity, "guarding", & being in pain. The PT has helped with that.

        I was very clear with the therapist that I did not want therapy that was dependent on her working on me (& paying!), but that would enable me to strengthen myself & exercise more, as I have lost so much fitness due to the IC. I felt some slight improvement after a few sessions (2x a week)), but most of the improvement came about at the end of the 9 sessions in 5 weeks I had last summer. I am now doing an 8 week course of 2x a week this summer with the goal of getting me back into exercise & reducing my pelvic pain. I've had 2 sessions so far this summer & am very hopeful. I wish I hadn't had to wait from last summer to this summer to move forward, but I am a teacher so can't do this during the school year. My insurance pays some of it. I have a $40 copay plus bridge toll & gas each time, so it's definitely a sacrifice, but a manageable one for a limited period of time with specific goals (not indefinite). Keep in mind that the cost of living in the San Francisco Bay Area where I live is one of the highest in the USA, so the charge may be much less in other communities.

        I don't know if that answers your questions. My mom also has IC & PFD and has been greatly helped by physical therapy, also. She also selected a physical therapist specially trained in pelvic floor dysfunction & IC.

        Keep in mind that your best sources of information on this or any other therapy are: your own body, your doctor, reputable research (you might look at the patient handbook linked above for articles or the ICA website). Family & other patients (including me) aren't really your best sources.

        Wishing you success in whatever you decide to do,
        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


        • #5
          Physical Therapy helped me quite a bit. I learned how to release muscles I didn't even know were tight. Those tight muscles just increased my pelvic pain. I went into PT with a very closed mind. I was doing it because my Dr told me to. Now I'm very glad I did. I've even gone back for a refresher course.

          Comment


          • #6
            Thanks ladies.
            I am so up in the air about this. I gues because I have so many health issues, it is hard for me to do the therapy. I have major stomach issues, and laying on that table is just hell for my stomach and my back.
            Also, she wants to do internal therapy, and I am just not willing to do this because I cannot risk getting a UTI, and I am prone to them.
            I believe I do have some pelvic floor issues, Like for instance, she did thing on the computer where I did these kegel type things and she said that it took me longer to relax them. I do not have alot of the typical PFD issues like pain in my thighs, or stuff like that though. In fact when I first went to the PT, she checked internally and pressed the pelvic floor muscles and it did not hurt at all. My pain is more so in my bladder.
            She did say my pelvic floor felt somewhat tight though. The thing that I am confused about is, everytime I go there, I end up feeling worse afterwards, and I mean it puts me in a flare if I am not already in one, and this will last for days. I am not sure if it is worth it. Like last week when I went, I was ok, but then afterwards, BAM , I went into a huge flare for a week. I think my body just does not like to be manipulated.
            My husband keeps saying that I should leave well enough alone, meaning if I am having a good spell where I am not in so much pain, why mess that up.
            Thanks for all the info ladies. I guess I will really have to think about this. Oh, one other thing that makes me iffy on continueing the PT is that if my pain was truely from PFD, why would the bladder instills help sooo much? Also, why would I have some good days where I dont have alot of pain. If it were my pelvic floor, I would think I would have pain all the time. I am just so unsure. The PT is expensive, I have to pay $25 every time I go. I just would hate to spend all this money for nothing. I just have way to many other health issues and money is tight.
            Jen

            Comment


            • #7
              I totally hear you. For me, I have both IC and pelvic floor issues. They're two different problems & the PT only helps the muscle pain & frequency.

              I don't have pain in my thighs or pain all the time, but I do have pelvic floor discomfort that is triggered by muscles being overly tight and others being overly loose & then the ligaments holding the bladder & bowel being "pulled on", causing more irritation & frequency, constipation, discomfort. I can feel it mostly when I've been under stress or with exercise or driving.

              For me, I'm not looking at it to fix everything, but just some of the problems & by lowering some of the pain, it makes life with IC more liveable.
              It's not going to cure my IC, won't change my bladder lining, doesn't take away all the burning, doesn't change my food sensitivities. It does make it possible to exercise & is strengthening my body.

              I've not had the experience of flaring for a week after the appt, that would really make me think twice. Honestly, from your posts it sounds like you really don't want to continue & are building a case or looking for support to not continue. You absolutely do not have to continue a treatment that you feel is causing more problems than helping. You can also ask your doctor for a referral to a different physical therapist if this is not working for you & if one is available in your area who knows IC/PFD. There are so many variables with IC & PFD & what helps one of us may be completely frustrating for someone else.

              Hang in there & move on to the next thing without guilt, if this is not for you.
              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


              • #8
                Hi Kadi.
                Thanks for the reply. I guess I will have to think on it. I mean I would hate to give up on something that may help me in the long run, but at the same time, I should not have to feel so afwul after a session. It does not make sense to feel worse off when you leave the office if you know what I mean.
                I may look into seeing maybe a different PT. I have a friend who see's this PT who is suppose to be very gentle and will go very slow. I also do not go for the internal PT. My urogyne is all for the internal though, he says it is what really helps. But I just dont want to risk getting a UTI since I cannot tolerate most anti-B's anymore, I have become allergic, and besides, they are not good for your overall health. To be honest, most of my health issues started after being on antibiotics.
                My urogyne does not think internal PT can cause a UTI. I wonder how it does cause them. I know I never had a UTI until 5 1/2 years ago when I got my first one. Now though since getting IC, I seem to get them alot. It just does not make sense.

                I would like to be able to do more at home excercises to help relax my pelvic floor more, as I believe this is an issue for me. But most therapists are into making money and rather have you come there twice a week, which I cannot afford.
                Thanks for all the advice. I guess I will take it one step at a time.
                Jen

                Comment


                • #9
                  I just started going, today was my second session, so I can't give much feedback. I do know that I didn't think I had much problems with my pelvic floor muscles, and I definitely do have bladder pain and frequency issues that I didn't think PT would help, also not incontinent at all. But I wanted to try because I want to say I have tried everything I could, not just pills, pills, pills.

                  During her eval (today was the internal eval) I was surpised to find I did have a lot of pain, more than I realized. I also have fibro, wonder how much of that is related. I also have RA and have had problems with my left hip ever since my RA dx, and a lot of my pain today was on that left side and my hip rotator muscles.

                  For me, it still remains to be seen. I will say, my PT is teaching me exercises to do at home. If your doesn't, I'd try someone new!

                  I do wonder about the internal causing a UTI.....I imagine it could only really happen if they did a sloppy job and didn't wash first, or something was unclean somehow. If I were you, I might consider trying the new PT, and if you try the internal, make an appointment for soon after you've showered. Make sure the PT washes her hands in front of you, and if she doesn't, ask her to! Mine just gently went around the most external area, not near my urethra. I would also clean up throughly, not just wiping with a kleenex. Ask for a wipe, or a washcloth (or bring your own), and wash front to back very carefully. I definitely can understand not wanting to get a UTI-we have enough problems at it is, and being on antibiotics so frequently has it's own set of problems!

                  Good luck with whatever you end up deciding!
                  My dx: RA, Fibro, Interstitial Cystitis, Bipolar Type 2, Pelvic Floor Dysfunction, IBS
                  My meds: MTX, Leukovorin, Humira, Prednisone for RA flares, Celebrex, Orphenedrine, Tramadol as needed, Wellbutrin, Lamictal, Lyrica, Trazodone, Nexium, Singulair, Atarax, Elmiron, Provigil, and Macrobid/Trimethoprim (rotate monthly). I also take a multivitamin, Magnesium, Calcium supplements, fiber supplements, probiotics, and vitamin D.
                  Current treatments: bladder instillations


                  Come play with me on Facebook!

                  Comment


                  • #10
                    Hi sphinx,
                    Thanks for the reply. The therapist I am seeing did give me excercises to do at home. I have to be careful though because to much moving or bending really upsets my stomach ( I have motility issues that cause severe pain and bloat in the gut, and bending of any sort makes it worse).
                    As far as the UTI's from the internal therapy, she was clean, and used latex fre gloves as well. I even ask her NOT to use any gels when doing the internal check, I asked her to use just water, which was fine. I think the thing is, any kind of manipulation down there can cause an infection just from putting pressure anywhere down there. I am at a loss as to why I am so prone to getting UTI's. I am VERY clean. I even just recently bought a book about IC and UTI's by ****** *********. She says that it is essential to bottle wash after every BM to prevent UTI's. I always washed with soap and water after a BM, but she has a specific way to do it, not using a washcloth, but rather applying the soap with your hand and then sitting on the toliet and having 2 500ml bottles filled with warm water to pour down the front of the labia and it will clean off all bacteria. She swears by it.
                    I just think that IC makes the bladder very susseptible to getting infections since we done have any protective lining like healthy normal bladders do and that any little bit of bacteria that get it can cause a huge infection is us, where in a normal person, they would be able to just urinate the bacteria out as it has a hard time sticking to the wall of a healthy bladder.
                    I am going to try another session of the PT This Tuesday coming up. I am not going to do any internal though. I will see how it goes. Thanks.
                    Jen

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