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  • Bladder Neuralgia

    Hi All,

    I posted a thread a while ago, but here's a bit of an update on my situation. I haven't been diagnosed with IC officially as my bladder appears normal and fills to a normal capacity. No infection, no signs of endometriosis, had all sorts of tests, lived with this for well over a decade now. Basically it looks like I have some haywire nerve somewhere making my life hell. There's no infection, no ulcers, nothing out of the ordinary which has lead me and my doctors to think that this is so and treating that is all they can do. Some form of Neuropathic pain. At the moment I'm stuck in the house, can't work or get out and socialize. I'm getting quite depressed about it, I can't escape and take a break from my body. It's wearing me down. Pain is my main problem. That awful burning. Urgency and frequency to some degree, but I can deal with that. Burning I can't.

    Things that used to help, no longer do like Baking soda and other alkalizers. Rarely they help. Sometimes acidic things help, but I can't rely on these, usually it makes things worse. Hormones make it go up and down too. Mid cycle and also when I'm on my period. I'm wondering, a doc prescribed some estrogen vaginal cream, has that ever helped anyones symptoms? Ovestin I think it was called. The only drug that has helped me where others haven't, was Lyrica. I felt great for about 3 weeks then it quit working which was hugely upsetting. It's considered the best drug out there at the moment, however my doc said just because it's considered the best, doesn't mean it's the best for me. Another drug might suit me better. However it's given some hope as maybe these sorts of medications are the way to go. Antidepressants (i've tried quite a few,) have had no effect.

    Of the other Epilepsy/Neuralgia drugs I've tried so far, Gabapentin, no luck. Currently on tegretol, only been a week though, no change. The pharmacist said it can take 2-4 weeks to see an effect. I'll stick it out just to rule it out if there is no change. Anyone had any success on this? can't see much evidence in my searches though. Can anyone suggest some other drugs like this for neuralgia to suggest to my GP if tegretol's a no go? i'm on a waiting list for a pain clinic but god that could take forever at this point, i'm still only on a list to get an appointment, so it'll take a while to get in and see someone. In the meantime, it's trial and error, see what we can do.

    I don't want to live in fear of toilets or be afraid to use one when we go out. Any advice would be appreciated, thank you.
    Last edited by Sour; 01-22-2011, 02:15 AM.

  • #2
    Ic

    Did your uro do a hydro-cysto on you yet?
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    • #3
      Yes, twice. A few years apart. And I've had a laparoscopy too. It's been a long road and it's down to this basically, finding a medication to help with the pain. Burning is the main problem I have. Like acid's been thrown at my bladder.

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      • #4
        Ic

        I hope you find relief soon, I am so sorry for your pain. All anyone can do is pray for a cure.
        <center>
        <a href="http://s1086.photobucket.com/albums/j441/linda5552/?action=view&amp;current=Picture005.jpg" target="_blank"><img src="http://i1086.photobucket.com/albums/j441/linda5552/th_Picture005.jpg" border="0" alt="Photobucket" ></a>
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        • #5
          The fact that you have a normal size bladder does not 100% rule out IC --- neither does the hydrodistention. Have you tired going on an IC diet? If not, I suggest you begin today and give it a try. You'll find the link to the latest food list in my signature below. Have you had a potassium sensitivity test? I know of at least one person whose IC didn't show during her hydrodistention and who has a bladder that's larger than normal, but her reaction to the potassium test confirmed IC. I haven't seen her for a while, but the last I knew she was doing well with IC treatments and diet.

          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

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          • #6
            Apart from soda diet doesn't really seem to bother me. I just read up on the potassium test. My uro was reluctant to administer any sort of instills on me as she felt they were a bit to extreme for me. None of the uro's i've encountered here have mentioned anything about potassium tests. The uro I just saw said she used all methods she could think of to diagnose me. I don't have the classic scarring and ulcers on the bladder so i'm being treated as having neuropathic pain only in my bladder.

            I'm no longer seeing my uro though, as she's refered me onto the pain clinic after exhausting all her reasources (she's the third one i've been too) I really need to get this pain under control.
            Last edited by Sour; 01-22-2011, 02:03 PM.

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            • #7
              I have severe IC and my bladder doesn't have hunners ulcers and doesn't look horrible. My capacity is lower than a healthy bladder but higher than a lof to others with IC. I do have food sensitivities but not like some people do.

              Donna is right. There really is no definitive test for IC as this point. It is a diagnosis of exclusion and based on symptoms.

              Sometimes it takes 4 or even 5 uros to get the right diagnosis. Good luck and keep trying!
              Sandra
              Link to the patient information, everything from What is IC? to Disability
              http://www.ic-network.com/patientlinks.html

              American Urological Association Clinical Guideline
              Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
              http://www.auanet.org/content/guidel...ent_ic-bps.pdf

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              • #8
                Thank you. My bladder capacity is normal. I can hold, depending on what mood it's in, for 6 hours sometimes. (provided I've been lying down and not doing much to begin with.) Though sometimes withing 20 mins I need to go again. In the future I might give another uro a go. Right now, I'm broke unfortunately due to not being able to work. However the tegretol seems to be starting to help. So we'll see after a month, how I am, if it's working well or has just flopped. Not having as good a day today as yesterday. Fingers crossed, I really need an answer to this.
                Last edited by Sour; 01-23-2011, 02:32 PM.

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