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  • #16
    Thanks for letting me know it did help some. She did mention about the internal massage thing but think I will only try that one if all else fails. Been having mixed emotions all day again. Happy to be trying PT but thinking how that little bit did me in. I keep thinking how I used to be. Able to leap tall buildings in a single bound. I want to give up so bad but I will not. I will not.

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    • #17
      thanks

      Thanks for letting me know! That is a relief. But for the biofeedback they seriously had to put something in your butt? sorry to be graphic....but was it worth it? did it help you learn how to relax those pelvic muscles? I haven't been told that I have PFD but I think I do from reading the descriptions of it. Was that what you were doing the biofeedback for? Thanks so much for telling me what you know about TENS. It's just nice to know what to expect when I get into this pain clinic. Just knowing what will happen takes away a lot of my fear. Oh and can someone tell me how to post a picture? I'm so glad I found you guys. I have been feeling so depressed lately with all this pain. It was funny (well not funny) to read about other people b/c you all sound JUST LIKE ME. I was diagnosed 4 years ago and have felt very alone b/c the people closest to me just think I have to pee a lot. You guys know it is much more than that and it's just nice to have found you. If anyone lives in Denver and wants to hang out just let me know. I would love to make a friend that has IC. We can go shopping together and I won't blink if you go potty 5 times an hour!
      Lee Ann
      Current Rx Meds:
      Atarax, Ditropan, Elmiron
      Prior to pregnancy: The above 3 meds PLUS Neurontin, Topamax, Loratadine, continuous OrthoCyclen, Lidocaine Patches PRN, Temazepam PRN, & Vicodin PRN
      Hooray for babies!
      Misc. lifesavers: Hot baths, ThermaCare Heat Wraps, Ice Packs. The IC Diet has changed my life.
      Didn't work for me:
      Detrol LA, Amitryptiline, Morphine, Percocet, TENS unit, Interferential Pain Stimulator Unit, Hypogastric Plexus Nerve Block
      IC (Mod-Severe) since 1996

      UPDATE: 5/21/08 Pregnancy and breastfeeding afterwards have alleviated my IC symptoms more than anything, EVER. Most days are 100% pain free & I now have normal frequency (as long as I take these 3 meds).


      My little sweetie! Jack weighed 9 lbs 12 oz and was born via c-section on Feb. 28, 2008...

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      • #18
        For the biofeedback it was either the butt way or a probe thing put in the vagina. I couldn't get it in. Was to big and painful so the butt way was easier. Only did it twice because it seems I have no problem relaxing the muscles. I know what you mean about the potty look from people when shopping. I go by myself now if I do go shopping. Got tired of feeling guilty because I had to pee or just hold it to keep them happy. Sorry, can't help you with posting a picture with your signature. I still don't really get it how to attach a picture with a post.

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        • #19
          trigger point therapy

          finding the right PT is also key. actually, i liked all my PT's (i had three in total over a 5 year time span), but the only one that truly was curative for me was the one who primarily used trigger point tx on me. i don't know what upper body trigger pt tx is like, but for PFD, it was like a serious massage on my gluts, thighs, and stomach. it hurt like heck the first several times, but i trusted the therapist and it wasn't more pain than i was already in, just different. she also did some internal work, but did not find evidence of internal trigger points on me, though i did have tense muscles. she never had me do kegels.

          i highly recommend finding a PT trained by Rhonda Kotarinos (Illinois). she is the guru/expert/pioneer in the field of PFD PT and trigger point therapy.

          I wish you all feeling better soon. It took me 9 years, but my PFD is very much in remission.

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          • #20
            vivig14, I've had the IC for 9 years this March. I can't even think of doing PT for 9 years or finding someone who can help with it. I am starting to get depressed about PT now. Ate too much junk food today because of it. Glad you had help from it.

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            • #21
              Hi All,
              I just wanted to say, especially to LeAnn, I also am in OT, took me almost 4 years to find a PT who specializes (or even knows about PFD/IC for that matter...other OT's did not know about it either...) Anyways, started with PT this past Tues., went again today, Fri.; and some of the exercises are quite painful...especially with the stim inside, doing the Kegels, it makes me have a "radiating" pain through my right pelvis area and down all the way thru "my insides" and all thru my right rear-end cheek and right hip and down right leg...wooo.....and the urethral burning/hurting...will not even go there about that...My pelvis and several of my ribs on right side are also "out" as PT said. It is only my 2nd visit, and I am SO hopeful I can get some relief...I almost feel like it is harder since I am in the "therapy field"...like I am not "doing the exercises right"...I have always been my own worst critic...oh well... just hoping we all get some relief...Thankfully my PT seems to be so caring and understanding...
              God Bless and Take Care,
              Kif
              Always try to do the right thing; it will astonish some people and gratify the rest- Mark Twain



              DX: IC-2003, Systemic Lupus w/secondary Sjogren's-2009, Total Hysterectomy with BSO-2005, IBS-forever it seems, Renal Tubular Acidosis, Vitamin D deficiency-2008, Vulvar Vestibulitis-2002, Pudendal Neuralgia-2008
              I also try and manage depression/anxiety, Migraines, Too many kidney stones to count-starting in 1991 to the present
              I had my 1st urethral surgery at age 4, have had urethral syndrome from then on.
              Failed treatments: Elmiron both instilled and oral caused severe increase in liver enzymes
              Elavil and Ditropan-severe bladder retention
              Currently on pain mgmt, lidocaine gel topically also gives some relief after initial 2-4 min burning when applied.
              Prior treatment included pelvic floor therapy and TENS unit, both of which I still do as needed.

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              • #22
                Kegels usually a no-no for IC/pelvic pain

                Kegels even with a stim are usually a no-no for those of us with IC/PFD and pelvic pain. There is even info in Dr. Moldwin's book about it. A lot of these PTs have gone to a weekend or two week course on pelvic pain, but they know a lot about treating incontinence, which Kegals are great for. Please be careful. Yes, one will be in more pain with PT, but some pain is wrong. I would call my doc on the kegel issue.

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                Originally posted by kiffy313 View Post
                Hi All,
                I just wanted to say, especially to LeAnn, I also am in OT, took me almost 4 years to find a PT who specializes (or even knows about PFD/IC for that matter...other OT's did not know about it either...) Anyways, started with PT this past Tues., went again today, Fri.; and some of the exercises are quite painful...especially with the stim inside, doing the Kegels, it makes me have a "radiating" pain through my right pelvis area and down all the way thru "my insides" and all thru my right rear-end cheek and right hip and down right leg...wooo.....and the urethral burning/hurting...will not even go there about that...My pelvis and several of my ribs on right side are also "out" as PT said. It is only my 2nd visit, and I am SO hopeful I can get some relief...I almost feel like it is harder since I am in the "therapy field"...like I am not "doing the exercises right"...I have always been my own worst critic...oh well... just hoping we all get some relief...Thankfully my PT seems to be so caring and understanding...
                God Bless and Take Care,
                Kif

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                • #23
                  PT should not cause pain according to expert

                  I've read and saved the interview posted here w/ the person who really is the premier expert in PT for this problem, Rhonda Kotarinos. From her interview:

                  "<rhondak> If you are seeing a PT and you experience increased pain after your treatment, that is not appropriate most of the time. You should talk with your PT about this. The goal is to have you more functional when you leave the office, not dysfunctional. You to feel better that when you came in."

                  I worked for 10 years as a massage therapist and I know a bit about trigger point and a fair bit about muscles. These are muscles and in the massage of the back, neck, etc muscles trigger point is used and it hurts a bit while you're doing it to the person but should never hurt so much that it feels like real 'pain' to the person. As soon as you're done pressing, they should feel better. I am quite certain pelvic floor muscles work the same way.

                  I would always tell a client to let me know if the pain felt too much or if it just felt like we were 'getting something done', as opposed to just rubbing over them which feels nice but doesn't accomplish relaxing that muscle.

                  Some people had the belief that I was the expert and that they shouldn't say anything if it was too painful. After a lot of experience you get a sense of how much pressure to use but every person is different and you must let them know they call the shots. You make them worse if you traumatize that muscle by overworking it. Nothing will make me believe the same isn't so w/ pelvic floor muscles.

                  It is very easy for we 'patients' to feel we're in the hands of a medical authority and we come in vulnerable and in pain. It's easy to think they should know how much pressure to use and how soon to work the innermost areas or any area that is really traumatized. Hopefully they do know what they're doing but they never know exactly what it is like for YOU unless you tell them.

                  When I treated a client whose back was in a serious spasm I NEVER worked the spasmed muscles on the first several treatments. I worked areas around it that are involved. When you work a spasm you make it worse. Cardinal rule. You can bring a lot of relief to the spasmed area by working the muscles around it. Healing happens very effectively that way. I'm sure the pelvic floor is no different. They are muscles just the same and they are muscles of a human being who is more than a set of muscles and bones and should be treated as such.

                  I haven't started PT but I will and I want to make sure that Rhonda's ideas are put into place, otherwise I am certain I'll be made worse.

                  Please know that it is your body and you should be giving feedback and not just submitting to the practitioner's expertise. No one is that expert. My 2 cents says if they aren't willing to listen to you, you shouldn't be working w/ them.

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