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  • #16
    Originally posted by Melanie526 View Post
    Confused about PFD and Biofeedback.

    I went for my first session of Biofeedback today...I was expecting her to say my pelvic floor muscles are too tight...however, she said the exact opposite...I can completely relax my muscles, and she said my contractions were kind of weak. She wants me to do Kegels, but everything I've read says Kegels tend to make IC pain worse. I don't have incontinence, pain with intercourse, or prolapse (things that Kegels usually address)...I have frequency, urgency, and pain...definitely don't want to make it worse.

    So I'm confused...the therapist admitted she has never worked with someone with IC, only patients with incontinence...but I'm assuming the Biofeedback machine doesn't lie...should I go get a 2nd opinion from another PT (my urologist works with a PT who has helped several IC patients...the only catch is I would have to drive an hour to get there, and driving causes my pain to increase).

    Also...my contractions registered at 2.5...Is this really weak according to the Biofeedback machine?
    Hello, I just read your post. I went through a biofeedback program for the bladder also. Apparently their focus is on incontinence. I went through the program for 6 weeks I think. The whole thing was to strengthen the pelvic floor using a kegel type contraction, but a little more specific, it makes the graph rise in a particular way. Oddly, she wouldnt let me see the screen until I complained I couldnt do the bio without the feedback! As soon as I could see the graph I was pretty much immediately able to figure out how to make it rise. It's like doing a kegel but high up internally, it's more subtle. I'm usually over enthusiastic and thanked her profusely. Later I had to admit nothin much was happening there. I personally feel its a bit of a scam unless your floor is really weak. She had me at extremely weak at first, then in one session I went from extremely weak to super super great ( because I could see the feedback!) I thought she was a bit lazy and uninterested, on the phone every visit-- a lot!! Meh, didn't do much for me. I want to go see the correct PT, for a too-tight floor! Especially now that sex hurts like the dickens I got to do something about that! Your mileage may vary, take care.

    Comment


    • #17
      please tell me how to do the PF stretches

      Can anyone tell me how to perform the stretches or provide a link with a description of the pelvic floor stretches you are talking about? I would like to try them at home.


      Your kind assistance is greatly appreciated.
      Mahalo,

      things that seem to help me: *Uribiotic (it's acidic so I take it with eCal) *eCal (whenever I eat a "bad" food) note: I have started taking magnesium along with the calcium (1 part magnesium to 3 parts calcium) and also zinc in a trace mineral supplement. I hope this will help balance out the calcium supplementation. If anyone has any experience with this please let me know. *ultimate lectin defense, *natur leaf
      things that worsened my condition: *aloe vera whole plant, *CystoProtek,B Vitamins
      other things that I have taken: *femflora probiotics seem to be Ok, please be careful with probioitics -since large amounts of probiotics seem to cause bladder problem/irritation.*Vestriol, *Cabbage celery juice in the vitamix
      *Avoid Fruit and Acids
      - used to take 100 or 200 mg. ketoconazole about once a week
      -used to take Peppermint and Oregano oil
      Other health problems: menstrual migrane, allergies, and arthritis (arthritis is sopratic and somewhat helped by grapefruit pectin and very small doses of pregnenalone - 5 mg or less).
      I like to drink nettle tea.

      Comment


      • #18
        My stretches were shown to me by my physical therapist but you can find all of them in Amy Stein's book -Heal Pelvic Pain. Another book by Wendy Cohan -The Better Bladder Book is informative and helpful but doesn't show any stretches that you can do.

        Comment


        • #19
          thank you

          thank you,


          I'm going to order the book with the stretches

          things that seem to help me: *Uribiotic (it's acidic so I take it with eCal) *eCal (whenever I eat a "bad" food) note: I have started taking magnesium along with the calcium (1 part magnesium to 3 parts calcium) and also zinc in a trace mineral supplement. I hope this will help balance out the calcium supplementation. If anyone has any experience with this please let me know. *ultimate lectin defense, *natur leaf
          things that worsened my condition: *aloe vera whole plant, *CystoProtek,B Vitamins
          other things that I have taken: *femflora probiotics seem to be Ok, please be careful with probioitics -since large amounts of probiotics seem to cause bladder problem/irritation.*Vestriol, *Cabbage celery juice in the vitamix
          *Avoid Fruit and Acids
          - used to take 100 or 200 mg. ketoconazole about once a week
          -used to take Peppermint and Oregano oil
          Other health problems: menstrual migrane, allergies, and arthritis (arthritis is sopratic and somewhat helped by grapefruit pectin and very small doses of pregnenalone - 5 mg or less).
          I like to drink nettle tea.

          Comment


          • #20
            I have been diagnosed with PFD,not IC yet. I started having problems when I was 23. I am now 62. Back then NOTHING was known about IC,at least not by any doctor I went to. IC wasn't even on the radar. How I suffered! I was called a hypchrondriac,sent out of drs. offices and even my husband thought it was all in my head. I was just doubled over. My pregnancy was a NIGHTMARE but I got a beautiful son out of it. I just did the best I could. I always felt like I had a UTI but none ever showed up. It was hard when drs. and nurses would get angry at me and I'd go home in tears.
            Then my husband was transferred. I went to a gynecologist here who ws SO understanding. I told him how,when I was in labor with my son,the drs. told me I didn't want to deliver him the normal way. They said I wanted it the "easy" way by C-section. There was NOTHING easy about it. They told my husband I was a hyprchrondriac and tense and that's why the baby couldn't be born.
            My new gynecologist ws outraged at the way I was treated. He said he wouldn't have cared if I came in everyday for a urinalysis. He said if a woman could stop a baby from being born women wouldn't have babies in the back of taxi cabs or at home because if you have the equipment to have a baby,that baby is going to be born whether you want it to or not.
            He referred me to yet another uro and God worked his miracles. This uro found I was having bladder inflammations. I cried and cried and felt SO vindicated. My husband felt terrible because he often was not very nice to me and now it was proven I had a problem.
            I now go to a urogyn because my urologist would not do sterile caths and cultures. With the onset of diabetes,I did begin to have UTI's occasionaly. My uro missed 2 of them because he would only do a urinalysis while I ws on pyridum. I ended up in the hospital twice with terrible kidney infections because he refused to do a sterile cath with culture. My urogyn insists on it.
            It's been a long hard journey but I am very grateful to God he has led me to help that is available now but wasn't back then. I have been receiving Interstim treatments at the drs. office but soon will be getting an Interstim unit at home. It cost me 25$ copay everytime I went in so it will pay for itself eventually. I am on valium which seems to be helping and the Interstim units seem to be helping. So,I have high hopes!

            Comment


            • #21
              went to my first PT today and we did biofeedback to check my kegals and she said that my kegals were almost non exsistent and I can't really relax my muscles either. I felt good knowing that there was actually something wrong with me but again, I thought we weren't supposed to do kegals. I already have to travel 4 hours for my doc and now my PT is "old school"? This is so frusterating. I tried asking in the WA state forum but I can't get anyone to answer me. I just want the chance to see someone who has more knowledge than I do. What should I do?
              symptoms when in a flare:

              I feel everything in my urethra but I know its really my bladder. Pressure, stinging, urgency,tingling feeling thats hard to describe.
              *I have a fibroid on my uterus near my bladder.

              Medication
              100mg Amitripyline ( I have seriously gained almost 50lbs on this drug but I feel it works)
              Flexoril 10mg (doesn't work)
              Hydrocodone 5/325 PRN
              Cetalopram 40mg *severe anxiety over flare

              Physical therapy hasnt really helped but I love her! I've learned so much! She states that my muscles around
              My urethra are very tight.

              currently seeing a Gyn in my town and a Uro in Seattle (4 hrs away)

              I have had lots of long term remissions. Currently been struggling with good & bad days since Jan 2012



              find me on Facebook! Brandy Schildknecht Covington

              Comment


              • #22
                I DO know how you feel. I've had so many drs and nurses tell me so many things over the years,I used to sit down and cry. Sometimes,it seems like there are never any answers to this stuff.
                My therapist tells me to do Kegals so I do. She also does Interstim treatments that do seem to help. We stopped them for a bit and my symptoms have returned. I go in Tuesday to learn how to use a Home Interstm unit. Sometimes,if the pain is really bad,they will implant a small interstim unit near the pain area but I am not interested in doing this nor have they suggested it.
                Are you going to a urogynecologist? Do you have one near you? So far,I really like mine but am not crazy about his PA.
                If you have a gynecologist you like,maybe you could discuss this with him or her. Or just talk to your family dr.
                I feel bad you have to travel 4 hours to see your dr. It takes me a half an hour. But I live in a city of a milion people and there are only four urogynecologists here.
                I also go to a counselor,not just for this problem but we do discuss it. Problem with counselors is finding one you like that knows what they are doing. I went to 4 before I found one I trusted. He's wonderful. He wants me to have a relaxation tape made just for me and I think I may if I can afford it. He said when I make up my mind he will arrange for a person to do it. He himself does not do them. But I had one years ago and believe me,they work! I used it for sleep,not my PDF but I do think one may help in that area.
                Today,I am in a lot of pain,especialy with my back and bladder. But I force myself to remain calm. I may never have a complete answer as to EXACTLY what is wrong..but I will never stop trying.
                Is it ok if I contact you through Facebook? Hang in there and put your trust in God.

                Comment


                • #23
                  Yes, please find me on Facebook! There are no uro/gyn's in my area. I may drive to Seattle just to get a second opinion on the PT. I don't have what I describe as pain, just the "gotta go" feeling. Fortunately, I don't have to constantly run to the potty. I just suffer until I know my bladder is full. No doctor has ever offered Valium but now I'm I interested in it now that I know that my muscles are very tight even when I try to relax them. I sure hope I can learn to relax those muscles. I'm an anxious person in general and my massage therapist makes fun of me because I can't even relax my body during a massage! Lol
                  symptoms when in a flare:

                  I feel everything in my urethra but I know its really my bladder. Pressure, stinging, urgency,tingling feeling thats hard to describe.
                  *I have a fibroid on my uterus near my bladder.

                  Medication
                  100mg Amitripyline ( I have seriously gained almost 50lbs on this drug but I feel it works)
                  Flexoril 10mg (doesn't work)
                  Hydrocodone 5/325 PRN
                  Cetalopram 40mg *severe anxiety over flare

                  Physical therapy hasnt really helped but I love her! I've learned so much! She states that my muscles around
                  My urethra are very tight.

                  currently seeing a Gyn in my town and a Uro in Seattle (4 hrs away)

                  I have had lots of long term remissions. Currently been struggling with good & bad days since Jan 2012



                  find me on Facebook! Brandy Schildknecht Covington

                  Comment


                  • #24
                    I can't say it enough -- everyone please stop doing kegels!! They will just cause more damage in patients like us. I went to a lecture with Dr. Moldwin about a month ago, and he was very emphatic about those of us with IC, PFD, etc. should never do kegels. His comments cemented what I've known for awhile. So no matter how good you think your PT is, if they even suggest kegels, they're not doing you any favors. Bjcov, I hate to say it since you drove for so long, but it's true. I learned the hard way. Honestly, I think 2 years later, I'm still trying to overcome the setbacks.
                    ----------------------
                    -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


                    • #25
                      I tried PT, it didn't help me, but I think because I don't have PFD very bad and I had many hrs drive each way to the PT, that the drive undid any good that was done.

                      Riding in a car is really hard on me, and I couldn't find one who knew anything closer to home.

                      A source for finding names of PT closer to you is to call the uros and gyno offices close to you, I find they often have a list of local PT, you can then call and ask the office questions as to if they treat PFD and how.

                      Take Care MG
                      My are with you all. May you all find a way to peace and joy in your lives.

                      Comment


                      • #26
                        Sky, thanks for replying! When she told me to do the kegals, I was hesitant. I have felt worse since starting them and I was astonished that I was so weak there. Heres a question tho. I haven't officially been diagnosed with IC. I've tried instills and they didnt work. I'm on all sorts of meds and although I do feel a little better, I don't feel a good as I hoped. I think I will head to Seattle and get a second opinion. Just wish I had someone like DR Moldwin near me.
                        symptoms when in a flare:

                        I feel everything in my urethra but I know its really my bladder. Pressure, stinging, urgency,tingling feeling thats hard to describe.
                        *I have a fibroid on my uterus near my bladder.

                        Medication
                        100mg Amitripyline ( I have seriously gained almost 50lbs on this drug but I feel it works)
                        Flexoril 10mg (doesn't work)
                        Hydrocodone 5/325 PRN
                        Cetalopram 40mg *severe anxiety over flare

                        Physical therapy hasnt really helped but I love her! I've learned so much! She states that my muscles around
                        My urethra are very tight.

                        currently seeing a Gyn in my town and a Uro in Seattle (4 hrs away)

                        I have had lots of long term remissions. Currently been struggling with good & bad days since Jan 2012



                        find me on Facebook! Brandy Schildknecht Covington

                        Comment


                        • #27
                          Originally posted by bjcov View Post
                          Sky, thanks for replying! When she told me to do the kegals, I was hesitant. I have felt worse since starting them and I was astonished that I was so weak there. Heres a question tho. I haven't officially been diagnosed with IC. I've tried instills and they didnt work. I'm on all sorts of meds and although I do feel a little better, I don't feel a good as I hoped. I think I will head to Seattle and get a second opinion. Just wish I had someone like DR Moldwin near me.
                          If you think about it, it makes sense that we're "weak" in our pelvic floors, though for a completely different reason than those with incontinence. Our PFs are clenched so tightly that to try to overload them with kegels is adding insult to injury.

                          How long have you been doing instills? In some people, they can take a few times to really kick in. It could be too that you just have PFD and not IC. It's never a bad idea to get a second (or third, or fourth, lol) opinion. Good luck in your search to find a good, understanding practitioner to diagnose and treat you! I'm lucky enough to be about 2 hours away from Philadelphia, so even though Dr. Moldwin is out of reach in NYC, I've found a nurse practitioner and PT in the area.
                          ----------------------
                          -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


                          • #28
                            I have stopped doing the kegals. I have felt worse since doing them. Before I did all this, I would take one pain pill and feel ok all day, now the pain pill doesn't take the feeling away. Its like a tingling, nervy, gotta pee feeling. My local PT is gonna try TENS unit tmrw. I have been reading Headache in the Pelvis and I am taking it to my gyno today to show him. I can't believe how frustrated I am that I don't really have any medical professionals that know a whole lot about IC,PFD. I am now starting to think its more PFD. I can usually eat whatever I want and don't feel any better or worse. I did get a referral to be evaluated by a PT 3 hours away from me. But, I'm willing to travel there to find out what she thinks about my pelvic floor. Thanks for listening!
                            symptoms when in a flare:

                            I feel everything in my urethra but I know its really my bladder. Pressure, stinging, urgency,tingling feeling thats hard to describe.
                            *I have a fibroid on my uterus near my bladder.

                            Medication
                            100mg Amitripyline ( I have seriously gained almost 50lbs on this drug but I feel it works)
                            Flexoril 10mg (doesn't work)
                            Hydrocodone 5/325 PRN
                            Cetalopram 40mg *severe anxiety over flare

                            Physical therapy hasnt really helped but I love her! I've learned so much! She states that my muscles around
                            My urethra are very tight.

                            currently seeing a Gyn in my town and a Uro in Seattle (4 hrs away)

                            I have had lots of long term remissions. Currently been struggling with good & bad days since Jan 2012



                            find me on Facebook! Brandy Schildknecht Covington

                            Comment


                            • #29
                              Hi,Brandy...I friended you on Facebook but haven't heard anything from you. My real initials are MHB. I don't like to give out my real nme anywhere else.
                              I received my Stim unit yet it's too soon to tell if it's realy working. My backache is gone but that may have been caused by my chair iwas sitting in.
                              It's so confusing with PDF,IC and other urinary problems because finding what works for you if time consuming and costly. I went in once a week for a Stim treatment and it helped a bit then. Then they waitied 2 weeks and I had problems again. So,I have a stim (not interstim) unit at home. It's costs me 65$ to rent for 2 months. If I think it works,it's $405 but the first two months apply to that cost. I use it twice a day for 20 minutes a time.
                              Maybe the tens uit will work for you. I know I had to go in once a week for my stim treatment for 4 weeks,wait 2 weeks then went back for another unit and my own stim unit. I am praying it works.
                              They ARE having me do Kegals suring the process. The stim unit will take some time for me to get used to doing myself.
                              The strange thing is that my problems usually hit me during the night,especialy back pain and bladder pain. But now that I have diabetes I have to go in to make sure it's not IC.
                              You just hang in there,Brandy,and message me anytime.

                              Comment


                              • #30
                                I just checked my facebook and it says that I don't have any friend requests. Weird huh? So the stem treatment is different than a TENS unit? It is all so confusing and the medical bills are piling up. I'm taking Elmiron, Elavil, Celexa (for anxiety) and I still feel the same. I guess I have good and bad days but ever since I've done those Kegals, I feel worse. I just wanna see someone that really knows what they are doing. I'd love to fly to NYC to see Dr Moldwin, but it'll never happen. I'm really thinking that alot of my problem is in my pelvic floor. I'm constantly tight down there and I am constantly catching myself and I make myself relax. If I'm standing up, I can feel like I need to relax but I just cant do it. I've never been offically diagnosed with IC either, My doc says that he wants to do a Cysto/Hydro if I'm not better soon. I just really don't wanna go thru the pain. Hopefully you can find me again on FB!
                                symptoms when in a flare:

                                I feel everything in my urethra but I know its really my bladder. Pressure, stinging, urgency,tingling feeling thats hard to describe.
                                *I have a fibroid on my uterus near my bladder.

                                Medication
                                100mg Amitripyline ( I have seriously gained almost 50lbs on this drug but I feel it works)
                                Flexoril 10mg (doesn't work)
                                Hydrocodone 5/325 PRN
                                Cetalopram 40mg *severe anxiety over flare

                                Physical therapy hasnt really helped but I love her! I've learned so much! She states that my muscles around
                                My urethra are very tight.

                                currently seeing a Gyn in my town and a Uro in Seattle (4 hrs away)

                                I have had lots of long term remissions. Currently been struggling with good & bad days since Jan 2012



                                find me on Facebook! Brandy Schildknecht Covington

                                Comment

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