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  • #1

    Unrelenting pain

    I am in unrelenting pain. It feels like I'm 15 again and curled up having period cramps, but I don't have the "equiptment" for that anymore (after an unneeded hysterectomy). I have both IC and pelvic floor disfunction.
    I don't know what to do. The percoset helps but only for a little while, norco does the same.
    I have a very very understanding dr, but I fear I am testing his patience with my problems. I'm not responding to any of my meds. To be honest, I wonder every single day why God gave me this test, and I feel like I'm failing it miserably.
    I just was to die if the pain's not going to stop. I can't go on like this.
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  • #2
    I'm really sorry you're in this kind of pain. I can relate to how bad you're feeling. I also had IC and pelvic floor spasms, and both together are a killer combo for sure. You mentioned that you're not responding to any of the meds. Are you sure there aren't any others you could try? Maybe some of the supplements that have been talked about here in the forums? I know what you mean about the Norco. They only seemed to help me for a very short time also. It took me quite a while to get out of the pain cycle I was in but I eventually did and tried a lot of different meds and supplements until I found something that worked. I was ready to go to a pain specialist but luckily things calmed down with diet, meds, and supplements. Maybe it's time to find another dr. who can offer you more options. I went through three before I found my current one who is open to anything and has heard it all, so I didn't feel like I was trying her patience.

    Comment

    • #3
      I'm so sorry you are in such a difficult place. How long has it been since you had your surgery? I also developed IC following what I now know was an unnecessary hysterectomy. During recovery from the surgery was when my IC reared its ugly head. I also found out that I had severe adhesions that were causing the largest amount of my pain.

      Are you following an IC diet? If not, I suggest you begin today. You'll find the latest food list at the link in my signature below.

      It's important to remember that many of us were where you are right now --- and most of us have improved with treatment enough to lead normal lives.

      I hope your tomorrow is better.

      Warm healing thoughts,
      Donna
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

      Have you checked the ICN Shop?
      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.

      Patient Help: http://www.ic-network.com/patientlinks.html

      Sub-types https://www.ic-network.com/five-pote...markably-well/

      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

      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

      Comment

      • #4
        I'm strictly following the diet, have lost 40 lbs since diagnosis.
        I don't know what else to do, the instills didn't help, DMSO made the pain worse. I have the added pressure of no insurance right now.
        I don't know what adhesions are, but I did have endometriosis. The surgery was 2 years ago. 2 months later, I got the "oops! It was really IC causing the pain" speech.

        I just don't know what to do, don't know where to turn. So I sit here crying on my couch with a heating pad and tears streaming down my face.
        I have the best IC dr in the area. He's wonderful and compassionate, but I'm starting to lose hope. And that's a hard thing to admit at 34 years old.

        I've thought that thing we're all afraid to say, but have probably all thought. I've thought it, but would never do it.

        Comment

        • #5
          Having no insurance definitely doesn't help. Have you tried the simple remedies like baking soda in water or plain white Tums? Sometimes they will help ease pain. Have you tried anything like elavil at a low dose? I mention elavil because it is very inexpensive and does help lots of people with pain control. It's an antidepressant, but at low doses can help with pain.


          Donna
          Stay safe


          Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
          Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

          Have you checked the ICN Shop?
          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.

          Patient Help: http://www.ic-network.com/patientlinks.html

          Sub-types https://www.ic-network.com/five-pote...markably-well/

          Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

          AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

          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

          Comment

          • #6
            Oh I am so sorry for you. I have been where you are at and it's horrible. I too have endo and IC and now I actually have discolored skin on my lower abdomen and inner thighs from how many times I burnt myself with a heating pad!! I actually take the cover off and put the heating pad right against my skin. For me percocet and vicodin did not take the pain away. During my menstral cycle I popped Motrin 800 like it was candy and Nerve meds like lyrica and Savella were the only one's that had any impact on my IC pain....Hang in there. I know its much more difficult without insurance. I hope you find answers soon!!

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