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  • #1

    help pain but no evidence

    Help I just want another opinion. I just had my 2nd Hydro last week. Due to the fact that I am in so much pain. The doc said that my IC symptoms are not very bad The only prooblem is why am I in so much pain??? Any input would be appreciated or stories of others in that boat??d
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  • #2
    Hi there: I have a few questions for you first...
    Are you in pain as a main symptom? Or is it that you were painfree prior to the hydro and now you're just having a hard time healing? (I hate hydros because I take so long to heal from them).

    And your doctor is telling you that you have no classic symptoms of IC? It is possible to have IC and not have the classic signs upon examination (ie: the tiny tears and bleeding). If you don't have the classic signs I think you might benefit from seeing another Uro and even ruling out other possible urolgy/pelvic problems: like severe PFD, fallen bladder, endometriosi, adhesions and the like

    Is he/she also telling you that you don't really have it that bad (as if he/she knows what you're feeling???). If that is the case perhaps consider seeing another doctor....There are a few that I could recommend in the North Shore, Metro and West of Boston. Don't feel bad about seeing a new doctor, many of us have gone thru doctor after doctor looking for the right match.

    Let us know how yoiu're doing, k!?
    Somewhere there's a reason /Why things go like they do /Somewhere there's a reason /Why some things just fall through /We don't always see them /For what they really are /But I know there's a reason /Just can't see it from this far /Maybe I don't like it, /But I have no choice /I know that somewhere, /Someone hears my voice / I thought I knew it all /I thought I had it made /How could it end this way? /I thought I knew Somewhere there's a reason /Why things don't go my way /Somewhere there's a reason /That I cannot explain /Just like the change of season, /Just may not be my turn /But I know there's a reason, /The lesson's mine to learn

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    • #3
      Hi,

      Sorry I should have explained more I had a hydro about 2 years ago. That was positive for IC I had DMSO's, nerve blocks and Elmiron. I urinate about 50 times a day. My pain is pretty severe, it hurts when I urinate all the symptoms. But I just had another Hydro cause I wanted to see if there was anything else wrong and he said there were some mast cells (not much) and there was inflamation and he cauterized some of the lining.
      Then I wonder why am I in so much pain still? Do any of you have this problem or know of anyone with this problem??? I was dx with endometriosis but the Dr. lazered that away a year ago!! I am so confused and frustrated please help!!!

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      • #4
        It is very normal to have severe pelvic pain with IC. Some people have mostly pain with hardly urgency frequency....I have the opposite--urg/freuency and no pain. Some people have all of it: pain frequency, urgency and even other conditions like Chroniuc Fatigue, Fibro etc.

        Mast cells can wreak havoc for some.....I know some take Benadryl and/or Atarax to help with those mast cells. Histamines being realeased in the body create those mast cells -- just like someone who gets hayfever in Spring...mast cells crop up in their nasal tissue--causing inflamation and making overall lousy feeling.

        What meds are you taking to help with pain and other symptoms? Maybe this is a better question: do you even have any meds precribed for you? Tell me if I misunderstood, this how the situation sounds to me:

        You are in extreme pain, your doctor however feels that you're *not so bad off* and you prolly have no medication regiment because he does feel you can get by with just...ack. Please tell me I'm wrong.
        Somewhere there's a reason /Why things go like they do /Somewhere there's a reason /Why some things just fall through /We don't always see them /For what they really are /But I know there's a reason /Just can't see it from this far /Maybe I don't like it, /But I have no choice /I know that somewhere, /Someone hears my voice / I thought I knew it all /I thought I had it made /How could it end this way? /I thought I knew Somewhere there's a reason /Why things don't go my way /Somewhere there's a reason /That I cannot explain /Just like the change of season, /Just may not be my turn /But I know there's a reason, /The lesson's mine to learn

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        • #5
          Yvette,

          No I am on strong pain meds Fentanyl patch. I just feel he thinks that it is no big deal and I feel like I am in so much pain and have so much frequency and burning that there should be something they could do to help. Again this disease baffles me. Why am I in so much pain. And it frustrates me so much to think that it wont stop. Thank you for helping me I think I will go to the expert the pain clinic told me about. You said you know of a doc in the North shore area do you know of any PT places for IC?

          Frannie

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          • #6
            If your pain has increased following the hydrodistention, it could be from the procedure itself, especially since you had some cautery done. If that's the case, you should feel better fairly soon. You should also be checked to be sure you don't have an infection.

            You'll want to be sure to follow your IC diet closely and drink an adequate amount of water.

            I hope you feel better soon.

            Donna
            Stay safe


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            Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

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            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.             [3MG]

            Anyone who says something is foolproof hasn't met a determined fool

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            • #7
              Ahhhh I see. Well actually I do know of a PFD Therapist in Danvers at Health South (up at the Hunt Hospital Complex) Gretchen Fishman was my PFT...she is wonderful....alhto she still may be using up her last weeks of maternity leave. I heard about that in late December. So who knows, perhaps she is already back to work.

              I think that checking out that pain clinic is an excellent idea. I hope they can help you with what you need.
              Somewhere there's a reason /Why things go like they do /Somewhere there's a reason /Why some things just fall through /We don't always see them /For what they really are /But I know there's a reason /Just can't see it from this far /Maybe I don't like it, /But I have no choice /I know that somewhere, /Someone hears my voice / I thought I knew it all /I thought I had it made /How could it end this way? /I thought I knew Somewhere there's a reason /Why things don't go my way /Somewhere there's a reason /That I cannot explain /Just like the change of season, /Just may not be my turn /But I know there's a reason, /The lesson's mine to learn

              Comment

              • #8
                Hi,

                Thank you all for your help I am going to call the doc today about possible infection and watch my diet. This disease is like mental abuse sometimes!!!

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                • #9
                  Franya:

                  I really can feel for you. I've had IC for 12 years plus. It started in 91-92 and I didn't get a diag until 1999. I had a hydro done and it landed me with a Foley catheter (otherwise known as hell on Earth for men!) and bleeding so bad I was in the hospital for almost three days.

                  But at least I got my diagnosis which lead to my Social Security Disability!!!! Two weeks of hell got me a new house, new computer, completely out of debt...

                  But before I had the diag it was an endless round of trips to the ER to ask for drugs. I was usually treated--once I'd been there a half dozen times or so--as "Oh, here he comes again." They'd give me T3s or Vicodin to go away.

                  I also had an old idiot uro give me a cystoscopy WITHOUT distention! So, of course, he found nothing.

                  Back in the days before diagnosis and before getting heath insurance again (strange I went from having none to having private and Medicare; my Rx bill last year was $13,400), I used to use ibuprofen 800 mgs and medical marijuana.

                  I'm not encouraging anyone to do anything illegal. Just relating mine own experience. And this was what I needed to sleep during a minor remission. AT least it lasted long enough for me to leave my home state, move 2200 mile away and became a man; found out I could make it on my own; also lost a wife a long the way (a very GOOD thing).

                  And found the most wonderful saint who consented to be my lady wife FIVE years ago on the 6th of this month.

                  She posts sometimes under Piceses228.

                  If you can't get the narcotics you need, try the OTC stuff, especially the anti-inflamatories.

                  I get relief sometimes from

                  ibuprofen
                  naprosen (Aleve)

                  There's also Orudis KT, and, finally, good old fashioned aspirin. If you can tolerate it, take it. It could help you. It not is an anti- finlammatory but it works like Acetaminophen and acts on pain both centrally and at the site of the injury.

                  Get Dr. Robert Moldwin's book.

                  You might also try to get Elmiron. It did NOT help me with pain, but other people report differently. It's not a Controlled Substance, so a skittish doctor would probably be more comfortable giving your that w/o a diag as opposed to the "Schedule IIs and IIIs."

                  Finally, you might try Valium, Soma, Methocarbomol.

                  A key component of IC is spasms of the "pelvic floor" muscles which both sexes have, tho' one imagines the female version being much thicker or tougher. This can cause your pain to significantly increase.

                  I'm in a LOT of pain now, but I have to pick my my daughter before noon at preschool, so I can't be all wasted when I do that. So I suffer for the sake my 4 year old's safety. When I get home tho'...

                  Anyway, by relaxing the smooth muscles of the Pelvic Floor, you may get relief. Valium is a Schedule IV and the scrutiny is not nearly as harsh as Schedule IIs (e.g. Perocet or Morphine).

                  Beware of ULTRAM.

                  Chemically, it's related to the NSAIDS (e.g. Aspirin, Ibuprofen, Aleve) it actually binds itself to the morphine receptors in your brain and your brain stem.

                  Some people get great relief from it. Many others report addiction or "being high" like feelings.

                  I never had none of that, but it made incredibly paranoid (ironically, the people I thought the drug was making me paranoid of WERE consipiring to get me fired; funny coinkidink, hunh?).

                  ULTRAM also gave me auditory hallucinations and made my temper terrible.

                  May be it'll work for you. Just be careful. Stop taking it if you feel any side effects. Be sure to quiz your pharmacist about it. Most doctors know very little about drugs. Experience pharmacy techs usually have far greater familiarity and knowledge of medicines that MDs.

                  Sorry this was so long. Time to start getting ready to get my li'l darling.

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