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  • #16
    Thanks guys, for all the responses. It sure does help to know that you people care and know what we are all going though.

    I'm due to see my uro next week so will suggest the stuff that you mention. I'm still suffering just as bad and don't know sometimes how I get through each day with the pain.

    Has anyone ever had a definitive answer on what causes the leg discomfort? Is it just referred pain from the nerves in the pelvis?

    Thanks again.

    Neil
    Neil

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    • #17
      Hey guys: I found a uro here in IA Des Moines that is. He is a know it all, and is not very compationet. It is a hassel to find a good uro that knows whats up with IC. I may try another uro in the same clinic. I have to because my insurence will not give good coverage out side my plan. Any way, I am doing much better after the DMSO cocktails and I am using Elivil for night time freaquency;it helps a lot. I know you did not post it here Breck, but I wanted to thank you for the prayer that you posted. I believe in prayer too. I have had IC for 10+ years and prayer has been a help!!! It any of you guys know of teatments that are helpful please share, I have found a lot of help that way. Thank you all again for posting. It is very encouraging to from other people who are keeping on and coping with something that is out of our control. God bless you all, Michael ps dose any one know what the UBB code is and how to use them? Thanks

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      • #18
        Hi Budgie,
        Re: leg pain, my doctor believes that the leg pain is due to nerve damage in the pelvic area. The other contributing factor is that the muscles in the pelvic region tense in a protective reaction and when there's no relief from the pelvic pain the muscles seem to "forget" their "normal" position. Ask your doc if anyone in your area does internal pelvic massage, it helps. The first several treatments will hurt like a son of a [email protected]#$%. Once the muscles have been relaxed, gentle stretching and regular massage therapy will help. I know what it's like, have been struggling with the same thing for years.

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        • #19
          Thanks Sandi

          My physio did start to do some internal myofascial release. It helped for about half a day and then the pain returned as before. When i mentioned this she said she wanted to look at my posture before doing anymore myofascial stuff. The problem in the UK is that they won't or can't see patients several times a week so I can't get the benefit of it.

          Budgie
          Neil

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          • #20
            Response to Budgie. I have been diagnosed with IC as well. My primary symptom is pain. I have been unable to sit comfortably for the past 2+ years. I have perineum pain, lower back pain, pain in the scrotum, pain in the inner thigh.

            I am presently being treated by a Physical Therapist who specializes in treating patients with Chronic Pelvic Pain. Don't know at this point if it is going to help or not.

            Please email me at maxridgerunner.wmconnect.com. I also event any other man who has been diagnosed with IC or Chronic Pelvic Pain to email me as well.

            I think we men who have this condition need to do more to support each other.

            Take care.

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            • #21
              Budgie,
              Hang in there man, I think all of us here know how tuff it can be. As far as what helps, I have found that consistenly watching your diet can help (avoiding caffine, carbonation, drinking mostly water), but it is not an overnight thing, you have to be consistent with it. Also, tylenol is a big pain reliver for me. Aspirin or other pain meds aren't as effective. As far as the pain in your legs, I do know that when your bladder is in shock, it can tighten any muscle connected to it. That is why many people with IC also have pelvic floor dysfunction. They're are many physical therapists throughout the country that teach you stretches to try to help you with this. I have gone to one, and although it is not an absolute correction, I do think it does provide some help. Ask your uro if he/she knows anything about it. Good luck with everything. We are here for you.

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              • #22
                Hi Guys

                Thanks for the responses. At last I have managed to get my physio to do myofascial release three times a week starting on 23 January. Let's hope this helps because the pain is still unbearable. I have started some new painkillers (Tramadol) which I need to take with paracetamol and they do take the edge off the urethral pain for an hour or so but it's the perineal pain that is the worst and it doesn't do much for that. I have forgotten what it was like to sit comfortably!
                I have been on the Elmiron now for over three months but it doesn't do anything for me yet.

                Thanks for the messages anyway guys. It is appreciated.

                Neil
                Neil

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