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  • #31
    OK,I sent another friend request but wil be talking to you in messsage,not on the board. My name will show and my initials are MHB. My family reads it and will get upset if they find out how sick I have been. But I'm a good listener,Brandy. Not sure how much help I can be but I'm always wiling to listen.
    The Stim unit I use is a lot like a TENS unit I think. I compared the difference from pics online and while they are similar,they are not exactly alike. It's too soon to tell if it's helping or not. I'm giving it 2 months. After that,I have to pay the balance and if it doesn't work,then I don't have to pay the balance.
    You just have to keep trying til you find a dr. you like and a treatment that helps. Even so,you may have flare up. With this last problem I had,they could not even use the scapula or their hand,I was so tight. Yet,when I had the cysto,it was fine. That makes me believe it's PDF. I asked my dr. if I had IC but he said no,I have PDF.
    I'm still not completely sold on all this but I AM willing to give it more time and keep an open mind. Having the problem with the PT and not liking his PA isn't helping matters but I DO need to give it more time. I explained to them that not a lot of people KNOW about the urogyn concepts and they should understand that. I come from being with the same uro for almost 30 years so I have to change my mind set and THEY have to give me the time to do so.
    The trick to any Cysto or dialation (my urogyn does not do dialations...YAY!) I ever had was to take deep breaths. Tell them to tell you what they are going to do and when they do it,you want to take a deep breath. They may use lidocaine that can help. But I had a cysto with this dr. and felt practically nothing. Hardly any pain at all. Just tell yourself to relax and take deep breaths. It will be over before you know it.
    How well I know the financial problems and how it even affects my husband. It's hard for them too. Just hang in there. Many people here care and this is a GREAT place!

    Comment


    • #32
      Leela11,

      What is Vesitrol? I can't find on the Internet, do you havea link? I'm also interested in the Uribiotic supplement, but the list of ingredients give me pause, like black pepper extract. I did not know anybody was working on the dysbiosis of the bladder! I will check ingredients again to see if the probiotic part has the usual cultures or something different. Yay we get something from everyone who posts, don't we! Thanks

      Comment


      • #33
        Skybluesoul,

        Can you give a bit more detail how the Kegels may have made you worse, I'm curious?
        Thanks

        Comment


        • #34
          JanieBA,

          Hang it all. I want to buy a Tens and this Stim thing you are talking about. What's the full name of the device? I can at least ask my pain doc about it. I know they are more for frequency than pain but I got both and who knows. I'll try anything.
          Thanks

          Comment


          • #35
            Originally posted by meagain View Post
            Skybluesoul,

            Can you give a bit more detail how the Kegels may have made you worse, I'm curious?
            Thanks
            Well, I forget exactly how long I was doing kegels....I think it was around 3 or more months regularly. I wasn't doing them alone, but with strengthening exercises. (Which I know now I wasn't ready for!) I started noticing pain in my bladder when I never had any before. (My main IC symptoms are frequency and urgency, though at the time I wasn't even diagnosed.) My periods also became more painful, and overall I knew something wasn't right. As if my pelvic floor wasn't hypertonic enough, it was getting even tighter. Even though I didn't know for sure what was going on, my body was trying to tell me something. I remember the last straw was when I got a bladder infection. I had a lot of pain, so I stopped the kegels all together and noticed a lessening of pain and that tight feeling shortly after. Since then, I've found a new PT who does myofascial release and helps me with alignment. I stretch on my own, and only do strengthening kegel-free exercises when I'm not in pain.

            Hope that helps, even just a little.
            ----------------------
            -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


            • #36
              I want to post about my doctor appointment and Interstim implant.

              I have been put on a 3 month waiting list for a trial Interstim. The specialist I saw tells me that not only will it help with my IC pain, he said it would help with my chronic pelvic pain, my back pain and help my bowels. He said i am a good candidate for the device.

              The doctor at the Pelvic Floor Center in Minneapolis tells me basically I have nerves that are miss-firing and they are sending messages of pain to my brain. He says that these nerves some how start sending the wrong message.

              I do not want to wait the 3 months if it will help me with all of these areas of pain.

              The doctor tells me my Burch or what he called 'a bladder vault suspension' is still intact. He doesnt want to go in and operate or remove the scar tissue. He says i am at the age where i should start menopause so when that happens the endometrosis will stop growing.

              This doctor is going to try to set up some PFD pelvic floor PT : )

              I also had a bladder scope and the Dr. gave me some peridium s.p. to numb the bladder and an Rx of Tramadol...it seems to help some.

              Comment


              • #37
                Chris, I'm glad you're trying PT! I hope you find some relief!

                I had a consultation for interstim too, at one point, and it really scared me. I'm surprised they even considered you if you hadn't tried PT yet. They usually wait until you've explored all avenues before referring you for that.
                ----------------------
                -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


                • #38
                  kegals

                  My PT says I need to exhaust my muscles, so they will relax. So she wants me to do Kegals. I am very leary, but I will try them for 2 weeks, until I see her again.

                  Right now I am doing 10 quick flicks, rest 10 sec.,hold a kegal for 10 sec., relax for 10 sec., do a downtrain (like you are releasing some gas)for 5 sec. Repeat all, 10X.

                  I was fine when I left her office, but then the pain set in and I have been alternating between the valuim suppositories, and pyridium. And spending most of my time in bed.
                  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


                  • #39
                    Originally posted by melhil View Post
                    My PT says I need to exhaust my muscles, so they will relax. So she wants me to do Kegals. I am very leary, but I will try them for 2 weeks, until I see her again.

                    Right now I am doing 10 quick flicks, rest 10 sec.,hold a kegal for 10 sec., relax for 10 sec., do a downtrain (like you are releasing some gas)for 5 sec. Repeat all, 10X.

                    I was fine when I left her office, but then the pain set in and I have been alternating between the valuim suppositories, and pyridium. And spending most of my time in bed.
                    Please stop the kegels. The pain from them is not a good thing, and will set you back in your recovery. I just want people to learn from my mistakes, and I can't say it enough. You're a member of this discussion board for IC and/or PFD, and kegels are NOT your friend.
                    ----------------------
                    -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


                    • #40
                      My uro told me NEVER do kegals they are the last thing you want to do for pfd he said. pfd needs relaxation exercises.

                      MaryJo

                      Comment


                      • #41
                        Hey, my Tens unit is called a Max2Elite Tens, they are expensive. I loved mine until I developed dermatitis and now I can no longer use it because it makes me itch, the pads are stickey and they make me itch more.

                        The interstim is something surgically placed on/in the tail bone. I have been recomended for a trial interstim hopefully it works for me and then i will get an impllant. I am on a 3 month waiting list to get one.

                        I just found out I have PFD...not really sure what that all is about, I will have to do some research.

                        The specialist said he wants me to work with a PF PT for a while. I wished him good luck finding my a good one that will come to rural ND.

                        I could not use my tens unit on my abdomne because of my scar tissue, but I know they use it for IC also.
                        TTFN

                        Comment


                        • #42
                          This month I was told I have PFD and I have PT for it on the 11th. Didnt know i had PFD. I find it interesting all of the things doctors say i have when i dont even know it or what it is.
                          I have been doing a lot of reading. Guess I will find out on the 11th.

                          Comment


                          • #43
                            If you have PFD stop doing Kegels and get a second opinion from another PT. My doctor is Dr. Moldwin and he, and my PT, and many books I have read say that kegels and PFD DO NOT MIX.
                            My current regimen:
                            Dancing, Laughing, Petting Emily and Louise - my shihtzus

                            Tried and gave up on:
                            Diazepam
                            PFD
                            Warm Baths
                            Millions of supplements
                            Elmiron instillations - did 5 weekly instills and did not help. Gave up.
                            Oxytrol patch - no consistent relief after 3 weeks and very expensive
                            Sanctura XR - tried for 6 weeks with no consistent relief
                            Imipramine - tried for a week, but started to have a "hesitant" void - kind of twitchy.
                            PTNS - doctor's office was disorganized, appts took hours and gave up after 4 treatments
                            Vaginal valium suppositories - not as effective as taking valium orally
                            Cystoprotek - ridiculously overpriced - taking same supplements from CVS
                            Elmiron - 100mg in the morn, 200mg in the late afternoon - no results after 1 year
                            Elavil - 25 mg at night- no consistent relief and 5 extra pounds
                            IV Vitamin C - the only person with an allergic reaction to Vitamin C drips
                            Hormones

                            Comment


                            • #44
                              I saw my PT for the first time last week. She found a "trigger point" during my internal exam. She had me squeeze while she pressed on it...this is a kegel, correct? And I understand that if I'm already very tight, this is a bad thing? Or is this different? Is this myofascial release?

                              She said I would feel better after the first session, but unfortunately, this has not been true. I'm not really worse or better...some days are better and some are not.

                              I'm so confused...she works with IC patients and is the only PFD PT in my state...and she's listed on this website.

                              I really appreciate any feedback. I'm new to this and totally overwhelmed.

                              Bjcov: My symtoms are almost identical to yours. I have to wait until Aug. 1 to see a urologist, and the PT seems convinced I have PFD only. Mine started with a strenous exercise program. Ugh.

                              Comment


                              • #45
                                Hi everyone,

                                I just thought I would add my personal experience/knowledge to the discussion since I have been learning how to do kegels for several years now and really, the best tool I have found to help with improving the strength of a kegel contraction is the use the kegel8. it's available for sale in the UK and they will ship to the US. The kegel8 seems to mainly build muscle mass in the area where you are placing the probe however after your strength increases you will be able to feel / have a contraction of the actual entire pelvic floor - it helps greatly if you add the workouts/ execises that are available for sale on dvd (ex. habit, total control).
                                Certainly holding these muscles tense (maybe on account of trying to not leak pee etc.) will cause some of these problems that we have. But usually the instructors say that you need to learn how to relax the muscles and that relaxing is just as important if not more so than contracting. But, once you learn how to relax the muscles (and you can also stretch them), I can't see how a little strengthening would be harmful to anyone. Personally, after having three vaginal births I can say that my pelvic floor muscles were extremely pulled out and I probably would have qualified for a surgical sling, except that I have no doctor to tell me that and instead I spent my time and money serching for products I could purchase myself that would help.
                                One place to look is Michelle Kenway. http://www.pelvicexercises.com.au/
                                &
                                here's something I just found, http://books.google.com/books?id=uYL...or&f=falselook for "zip up your pelvic floor"
                                also there is another book about relaxing the muscles..called "heal pelvic pain"
                                anyhow, it's my position that most women in america probably don't know what a kegel is because we are told to use the same muscles that stop and start the flow of urine. well...if you have have had damage, muscle tearing etc. from vaginal birth you should better try something like a kegel8 to get you started, and set the probbe to give a longer resting period and slightly longer contraction since the pelvic floor muscles are really slow to contract and you won't get the full benefit unless you give it time to fully relax and fully contract. You can copy the physical therapy model, do your reps then take a short break etc. and work out only every other day.
                                hope this helps someone and if it doesn't apply to you then please don't follow me.
                                thanks,

                                love ya

                                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.

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