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  • #1

    Please help

    I am having a really bad flare. It has been going on for about a month! At first I thought it was a kidney stone and that has been completely ruled out by 3 kubs. ct scan and an ivp. And countless urine tests. My pain is from my bladder all the way up my lft side and across myback. I have not been able to eat, and have lost 18 lbs in a little under a month and I only have four pain pills left and cant get into see my uro/gyno until aug. 1. I have done every rescue that I know to do!!!!!! I am getting desperate. The more I hurt the madder I get and the worse I hurt.

    Thank u for your time and in put
    becca
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  • #2
    Do you have a primary care physician? If so, I suggest you call him/her and ask for some help with pain until your uro appointment.

    Sending warm hugs,
    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

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    • #3
      He will not call them in over the phone. I live in ky and we have a lot of problems with people using meds for fun. I am sooooooooooooo tired. I am hoping that something will give soon. It is so frustrating. Thank you for the qick reply.

      Comment

      • #4
        becca 79 pain

        If you are in mod. to sever pain and can't get in to your PCP. Then I would go to the E.R.
        YOu say the pain is from your bladder all the way up your left side.
        This does sound kidney related. However, you know all the nerves are connected. I'm concerned that your have lost so much weight . I would as the next Dr. you see re: pancreas. Of course this isn't usual for it. But the weight loss??? How old are you? Was pain and wt. loss the only symtoms?
        I haven't noticed anyone c/o wt. loss with IC. have you icnmgrjill?
        lizzie_71

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        • #5
          When I was in the process of being diagnosed, I was in a great deal of pain and definitely lost weight. I have a tendency to be overweight, but at that time I was so skinny that my knees, elbows, wrists, and ribs were protruding. I simply couldn't force myself to eat. Once I was diagnosed and began to feel better, my appetite came back and I gained back what I had lost.

          I agree that a visit to ER is a good idea if your own doctor isn't available to help.

          Sending 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

          • #6
            Lizzie 71 I am 31. I have been to the uro twice lst wk and the er. The uro said and these where his exact words "There is nothing surgically I can do u need to see ur gyno" and I said my gyno I have had a complete hysterectomy what exactly is he suppose to look at? He said scar tissue. I have had a ct scan, 3 kubs and a IVP. They said my kidneys are functioning fine But it feels like a kidney stone and I am prone to them. I called my gyno and he is the one that done my hydrodistention when i had my hysterectomy. They dont think its scar tissue they think its a really bad flare. But I cant seehim til aug. 1. The weight lose is from not being able to hold down food when Im in severe pain I have always been that way. As far as the er they just treat me like Im just lookin for drugs. That makes me so stinkin mad. Stress is my biggest trigger and I have been under a tremendous amount of stress for the las 7 months. About 3 months ago I had Pelvic floor spasms so bad that I couldnt stand for more thana couple of minutes with out cryin. I am suppose to hav the hdrodistention and a surgery for vestibulits this fall. I am hoping to have some answers soon I cant continue doen this road Thank u

            Comment

            • #7
              I really feel for you and can empathize with you.

              Your pain that goes all the way up your side sounds like mine, no one has ever figured out what it exactly is from, lots of theories but nothing proven on tests. I had all you the tests mentioned and more over the years. Many lasp, cysto, IVP, ultrasounds, Cat scans, MRI's etc. and seen a whole array of different types of Dr.'s and specialists.

              My pain has ranged from 2-10+ from this, it can be steady and can stab me out of no where's that can drop me to my knees, thankfully this doesn't happen too often.

              Another symptom I have is sometimes I have the sensation of my R.kidney being cold, with the rest of me being hot.

              I had a hysto and gallbladder removed in 2000, for other reason but they thought this would help, I have been told many times I have kidney stones, had multiple surgeries to retrieve non existent stones. This was before IC diagnoses.

              I now am have ab spasms after I eat and bad urinary retention, so I am starting all over again with the tests. I have 3 different ultrasounds scheduled in Sept. I am pretty sure this will lead too a C scan or MRI, I don't hold out much hope they will find anything this time either.

              Theories I have been told, kidney stones, spasms in the main artery going to the kidney, kidney infection, reflux from bladder due to retention, IBS, abdomen congestion what ever that is, IC in the kidney, panaceatist, flu, virus, spasms in the duct coming from the pancreas, scare tissue, back problems, GERD, spasms in the Esophagus, appendicitis, parasites, basically anything they give a name to it and get me out of their office or pushed onto another Dr.

              When this side pain started many years ago now, it started with a bad kidney infection, which took forever to get rid of and left me with this R. side pain. It always is worse with flares or UTI's, it always improves with Ab's but can't be on them all the time.

              I don't ussally loose weight with it though, but at times I have.

              You need to go back to the Dr. and keep going back till they find something that helps you even if they can't diagnose it.

              I hope you find out what your problem is and a solution for it.

              Good luck MG
              My are with you all. May you all find a way to peace and joy in your lives.

              Comment

              • #8
                Thank you Mothergoose that is exactly how I feel. This jus came outta no where after a really bad uti. It was E coli and I usually only get those with a K stone. My gyno is convinced that I am having a really bad flare. Im gonna call him tomm. to see if he wll call me something in, Even if its just enought o keep me from vomiting. Does it get better any of it?

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