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  • depressed beyond belief.

    I am not sure where to begin . Looking back this has been going on for quite some time it was 2 years ago when I had to fill my bladder for an ultrasound that led to my ablation and I remember telling them my bladder was full as i felt like I was about to pop only to be told i needed to drink more water and come back in 20 minutes because my bladder was far from full. Of coarse that issue was never addressed , the ablation was performed and i was on my way . At the time I was happy because the constant bleeding had stopped and just thought that the frequent calls of nature came with the territory of having 5 large babies in my reproductive years.
    About 14 months ago I began having extreme lower back pain especially upon waking in the morning if I had managed to hold my urine over night it was worse.
    I thought great kidney problems. I began to eliminate any drinks from my day other than my two cups of coffee in the morning and the rest was water only. That helped a little bit but not much and my bleeding returned not constant like pre ablation but every two weeks or anytime I was too physical . the bleeding would sometimes last up to a month so I knew it would soon need to be addressed but having no insurance or money to spare it was put on the back burner. Eventually I had pain that put me in the emergency room at which time I was told that I had fluid trapped in my uterus from a failed ablation . I found a clinic that I could go to and began going through a process of elimination with a Gyn that would not even talk about a hysterectomy one of the problems she wanted to treat me for was IC but I the research nut that I was just knew I need a hysterectomy and never really paid much attention to what she was saying about IC . My husband finally got insurance and I found a Gyn to do my hysterectomy . I was so excited thinking this was it , she was doing a radical hysterectomy with the DaVinci procedure so my recovery time would be minimal and I would be able to get out and help support my family. The hysterectomy was done on December 9.2010 at first things were great , or so I thought. I started having this horrible pain again that was not normal, then some incontinence (very mild ) and thought oh no what is going on here. I went in and she looked at me to assure there was no fistula or infection and the IC talk began again. Now this is the second Dr to talk to me about IC . My research mode kicks in and I just start crying . I have made my appointment with a Urologist for Jan 20th and am eliminating some of the obvious culprits from my diet . My pain is constant again and yesterday I cried myself to sleep because of the pain in my back, my bladder spasms and down into my thigh AGAIN I thought this pain would be gone after the hysterectomy . As it turns out it seems I had pain from the trapped fluid caused from a failed ablation and the IC both, there was no one good answer for me. I feel so far beyond depressed. I feel so helpless. I know I will end up in the ER before the 20th for pain management and I pray that the Urologist I picked from our insurance is good with IC . I did ask if they are familiar with treating IC but other than that I had no idea what to ask . Anyway I am encouraging others to listen to their bodies now because I put this off so long that all of my symptoms and pain falls in the severe IC diagnosis and I am afraid I only have myself to blame.
    Last edited by ICNDonna; 01-04-2011, 06:26 AM.

  • #2
    I'm so sorry you're going thru this

    I, too, had an endo ablation several years ago that I thought would take care of all my problems. I've always had frequency and like you, just thought it the way I was due to babies, etc. In October I began having pain, real "crying, I think I'm going crazy" pain. Reading your post made me think of what I've been thinking since Oct., maybe if I had a hysto it would "cure" everything! I've seen my share of uro's who say they treat IC, only to find out they really don't have a clue. I have an appt tomorrow with a specialist (hopefully he's a specialist) and we'll see.
    I got a referral from my gp to a pain mgmt doc who has absolutely saved my life. And that's not a figure of speech. If you look at the top of the page here, there is a link about suicide. There's a reason it's there. I still have pain, don't get me wrong. But with meds, it's manageable. I hope you get some relief before the 20th. That's a very long time to suffer. If you can, try to see your gp for a referral to pain mgmt or maybe your gp would be willing to do it until the 20th. I will tell you though, urologists are infamous for not prescribing pain meds. Which just baffles me because this isna chronic pain condition. Take care of yourself. And if you need me, I'm here as are a lot of other people. And we understand. You are not alone! Remember that.
    Last edited by ICNDonna; 01-04-2011, 06:50 AM.
    Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
    Lexapro-20 mg
    Aciphex
    Ambien-as needed
    Percocet-7.5 up to 3 per day as needed
    Valium-10 mg x2 per day
    Phenergan-1 at night
    Prelief w/everything
    Now recovering from acute pancreatitis

    Currents treatments that help somewhat:
    Heating pad
    Hot baths
    Ice
    Being VERY still while lying down with legs elevated

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    • #3
      I'm sorry you are having such a hard time. It sounds like you are really struggling right now. Be patient and don't blame your self. It isn't your fault. Treat yourself with kindness and be patient with yourself. Find a good doctor and believe that you can get to a point to manage this condition. Sometimes being at rock bottom isn't so bad as the only way to go is up. I hope you feel better soon. Hang in there.
      What helps
      Elmiron 200 mg bid
      Wellbutrin XL anxiety and depression
      Oxybutynin ER 10 mg
      Yoga


      tried and failed
      Cardura, Hytrin, Flomax, Prosed DS, Vesicare, Pyridium, Cystoprotek (caused GI problems), Lyrica, Pamelor

      "We can't wait until the storm is over. We need to learn to dance in the rain."

      Comment


      • #4
        You need to talk to your Dr. about how you are feeling. Are you on any kind of antidepressant? Anytime you feel the way you do you should be talking to someone about it and seeing what they can do to help you through your tough time.

        It also time to take a serious look at your diet. The coffee and other foods you might still be eating and drinking can severely impact your daily level of pain.

        First and foremost though call your Dr. today to get help with your depression.

        Hugs,
        Jolene
        Jolene

        "Life is what happens when you are making other plans" John Lennon

        IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html

        Information for Patients can be found here.
        http://www.ic-network.com/patientlinks.html


        Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]




        Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

        "IC Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you."

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        • #5
          Dyno is correct. Those two cups of coffee could be directly causing your pain if you do have IC. There's an IC diet food list at the link in my signature below. I think it would be a good idea to put yourself on the IC diet today --- it just might help.

          It's good that you have a uro appointment.

          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
            Thank you everyone for the support
            And the advice . I know the coffe has
            To go and so many other things
            I am noticing that causes me pain.
            I appreciate the adice about urologists
            And pain too . Best to know now
            Though so I can make arrangements
            To see yet another doctor.

            Comment


            • #7
              pain management question

              I just spoke to a pain management
              Clinic and the lady told me that without
              My records they would need an MRI
              To treat me . Will an MRI even show them
              Anything about IC ? I was just curious
              If anyone else encountered this problem.

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