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  • #1

    Introduction / Request for advice

    I have a 17-year-old daughter that was diagnosed with interstitial cystitis about 4 years ago. After almost 2 years of chronic pain in her pelvic area, numerous wrong diagnoses, and two surgeries, we finally found Dr. Childs from Birmingham, Alabama. He diagnosed her with 3 pelvic hernias and IC. He performed a third surgery and repaired the hernias. He told us that, due to the location of them, there may or may not be nerve pain in her future. He put her on Elmiron and Ovcon 50 to suppress her cycle. Following the surgery, her IC worsened but after a year or so, she was much better and was able to get off of her Elmiron. Within the last year or so though, she has really had a hard time. She began having issues with her GI system (diarrhea, nausea, etc.) and pain down her leg. After going to a GI doctor, the diarrhea is under control with Welchol. However, she still has severe pain down her leg and has episodes of pain in her joints. All of this is in addition to her IC pain. It all seems to go together; when her bladder hurts is when she has the other issues.
    She is taking extra classes in order to graduate early from high school which makes this a much more difficult time for her to be in such pain. I just do not know where to turn to at this point. Is it common for all of these other symptoms to go along with IC (stomach problems, pain in joints, nerve pain, painful monthly cycles, etc. )? Also, I have no idea what type of doctor to take her to next. It seems as if everyone we've been to, with the exception of Dr. Childs who was wonderful, doesn't understand IC or how to treat it. Dr. Childs is about 7 hours away from us so it is difficult to continue seeing him.I am writing to ask your advice or any input that would point us in the right direction. Anyway, thanks for taking the time to read this and for any advice you could pass along.
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  • #2
    Questions about the leg pain

    What kind of leg pain and where is it and where does it begin and where does it go to? Is it a sciatica sort of pain? It is kind of hard to give you some advice not knowing where the pain is or what brings it on. I had leg pain but mine was sciatica and was brought on at first by disc problems at an early age and then later by spinal stenosis. It caused much leg pain, down the groin area, inner thigh, calf, buttocks, and ankle area at one time or another. I hope your daughter can find some relief.

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    • #3
      Her leg pain starts a little higher than her pelvic area and shoots all the way down her leg. Dr. Childs told us when he repaired the hernias that there may be some nerve damage, but she hasn't had any nerve pain with it until the last year or so. Also, it only seems to hurt when her IC is at its worst.

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      • #4
        I don't know about the nerve pain, but if she was doing well on elmiron, it is not usually stopped. Elmiron is like a bandaid --- it can be very helpful when taking it, but the effect isn't permanent so most do need to continue it.

        My suggestion for the leg pain is to talk with her primary care physician about a referral to a neurologist or neurosurgeon for testing.

        I hope you get some answers soon; I know it's very frustrating for her.

        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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        • #5
          I would have a consultation too. Also, I had a session with a pain management doctor who taught me isometric exercises. I had terrible groin pain and it caused awful pain down my leg and after I began the exercises the pain was eased somewhat. Mine was caused by nerve damage and altho the pain never went away totally it was so wonderful to have some relief. I wish your daughter much luck.

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          • #6
            I would recommend a physical therapist who is VERY experienced in pelvic pain. I would also start acupuncture. Good luck! Oh, and if the Elmiron worked why go off of it?

            Rachael

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            • #7
              Mom1212, I get that pain down my leg when my bladder pain is at its worst. Don't know if it is connected to IC, but it sure feels like it is. I use a heating pad everyday as soon as I get home from work. Seems to help a little.

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