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  • Is going to ER a bad idea?

    I'm an IC veteran and I've never gone to the ER for IC pain. But several times during this past week I have wanted to. I am on pain management, but my meds are not helping.
    I am starting to wonder if this is more than my bladder... sometimes it is so bad I have to cry, I am in bed all day with the heatng pad on my abdomen and ice between my legs (I also have pudendal neuralgia). I follow the IC diet strictly, and all I have had today is a glass of milk. I have a regular pain clinic and plenty of pain medication

    Can anyone relate your experience when you have gone to the ER? Is it helpful, or does it just cause more grief?
    thanks....
    [SIZE="2"][FONT="Lucida Console"]
    My blog: http://icandpne.wordpress.com
    1995 - Original symptoms: urethral pain and knife in the left side of vulva. Dx'd with "urethral syndrome" 1997- Dx'd with IC (potassium test) by Dr. Lowell Parsons. Tried all "usual" IC treatments, Elmiron, Atarax, DMSO, heparin, lidocaine instillations. 2000- First hydrodistention by Dr. Daniel Curhan, classic IC glomerulations & mast cells. 2005 - 2nd hydrodistention by Dr. Christopher Payne, Stanford University; dx'd with "refractory" Interstitial Cystitis. 2006 - Dx'd with left pudendal neuralgia by Dr. Jerome Weiss, had two unguided nerve blocks, pain worsened. 2008 - Botox, unguided intravaginal blocks (*WARNING* risk of further damage) by Dr. Felicia Lane; PT with Julie Sarton. 2010 - PNE (Pudendal Nerve Entrapment) surgery, TG approach, by Dr. Michael Hibner. (FAILED) 2011- PNE surgery by Dr. A. Lee Dellon, frontal approach. (FAILED)
    Jan, 2012 - Dx'd with "centralized pain" by Dr. Joshua Prager, UCLA Pain Management. 3-day ketamine infusion, nearly pain-free!!! Bad news: Bladder flared as ketamine is known bladder irritant. Oct, 2012 - Pain pump trial on Dr. Prager's recommendation. Awesome results!
    Nov. 13, 2012 - Surgery to implant intrathecal pain pump, which has been a lifesaver! Success at last! Thank you Dr. Prager!

  • #2
    It's not a bad idea if you truly need to go and have exhausted all options. I would however contact your pain management doctor or your primary care doctor first if you can get in touch with them. You can call the hospital and ask if they have a urologist on staff in the ER that can help you better or just go and let them know about your situation. Either way you should tell someone about your increase of pain so they can help you. I hope that you feel better. Let us know how your doing.
    Last edited by jennjenn; 07-01-2011, 10:55 AM.
    Jenn



    Never, never, never give up! - Winston Churchhill

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    • #3
      If you really need to go id go.. All they did for me though was give me morphine.... which in my opinion helps a little with pain but doesnt take the urge to pee away..... The last time I had a flare I went to go to the ER but it was PACKED.. and in that case not worth it... But it could be that you have an infection or your right it could be something more... better go in to be safe. I really hope you feel better.

      Thinking of you.

      Jenn xoxoxox
      28 yrs old,

      I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

      What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

      Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!



      Me in my graduation gown!

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      • #4
        If you have signed a contract with a pain management specialist, you definitely need to contact them before going anywhere else for help with pain. If not, ER can be a wise choice.

        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


        • #5
          Thank you for taking the time to read my message and respond.
          My mind doesn't work when I am bombarded by pain.
          I did the usual flare remedies and it helped some - baking soda in water and pyridium.
          I did get in to see my primary dr., and she is concerned I am having bowel/intestinal problems as well as my bladder -- my abdomen goes into spasm and gets tight and tender. When this happens I am afraid to eat.
          She prescribed antibiotics, thinking I might have a blockage, or infection.

          OOOWWWWWW!!!!! WRONG THING to TAKE!!! After two days (4 doses) of flagyl and cipro, my IC went into full-out agony. I was moaning and crying in bed and called the doctor to tell her I was discontinuing antibiotics. She said okay but is referring me to a GI dr. to follow up.

          I see my pain dr. next week. I am aware, on an hourly basis, that my pain is not controlled. I don't know what to do. I am already on pain management (Fentanyl patch with Norco for breakthrough and diazapam for spasms) I avoid taking the Norco and diazapam except when absolutely needed -- and I also don't want to go up any further as I feel it is already compromising the health of my digestive system.

          I've had IC (and pudendal neuralgia) for over 15 years.
          I am ready now to research the next steps, as I cannot continue to live in such pain.
          My local pain dr. and urologist keep pushing a stimulator, such as Interstim, but my PNE surgeon and I are dead set against it. For one, it is not even FDA approved for pain, but frequency and urgency, which are not my problems.

          So I am starting to research:
          - pain pump
          - getting my bladder removed

          Any feedback or recommendations are appreciated. Thanks!
          - Sharon
          [SIZE="2"][FONT="Lucida Console"]
          My blog: http://icandpne.wordpress.com
          1995 - Original symptoms: urethral pain and knife in the left side of vulva. Dx'd with "urethral syndrome" 1997- Dx'd with IC (potassium test) by Dr. Lowell Parsons. Tried all "usual" IC treatments, Elmiron, Atarax, DMSO, heparin, lidocaine instillations. 2000- First hydrodistention by Dr. Daniel Curhan, classic IC glomerulations & mast cells. 2005 - 2nd hydrodistention by Dr. Christopher Payne, Stanford University; dx'd with "refractory" Interstitial Cystitis. 2006 - Dx'd with left pudendal neuralgia by Dr. Jerome Weiss, had two unguided nerve blocks, pain worsened. 2008 - Botox, unguided intravaginal blocks (*WARNING* risk of further damage) by Dr. Felicia Lane; PT with Julie Sarton. 2010 - PNE (Pudendal Nerve Entrapment) surgery, TG approach, by Dr. Michael Hibner. (FAILED) 2011- PNE surgery by Dr. A. Lee Dellon, frontal approach. (FAILED)
          Jan, 2012 - Dx'd with "centralized pain" by Dr. Joshua Prager, UCLA Pain Management. 3-day ketamine infusion, nearly pain-free!!! Bad news: Bladder flared as ketamine is known bladder irritant. Oct, 2012 - Pain pump trial on Dr. Prager's recommendation. Awesome results!
          Nov. 13, 2012 - Surgery to implant intrathecal pain pump, which has been a lifesaver! Success at last! Thank you Dr. Prager!

          Comment


          • #6
            Sharon,
            I'm so sorry that these days have been so tough on you. Your journey for treatment and understanding is amazing thou.
            I hope you get good answers and find some relief.
            I'm cheering for you!

            Joslyn
            Joslyn
            IC symptoms in May 2011
            Mild IC dx by Cysto July 2011
            Symtoms decrease 80% by September 2011!






            Tums 100mg
            fish oil 3-5 grams
            Probiotic 5 billion
            Magnesium
            Bladder Ease
            Unda Drops
            Mediclear Plus Protein Shake

            Physical Therapy Graduate!
            Meditation 2x a day
            Running
            Castor oil pack
            Teas (nettle leaf, linden flower, camomile, marshmellow root)

            Have tried
            In office instills (pridium, heprin, lidocain, elmiron)
            Cystoprotec
            Desert Harvest Aloe
            atarax 25 mg
            Vesicare
            Lexapro
            5HTP
            sanctura

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