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  • scared by new symptoms

    Hello to everyone out there,

    I was diagnosed with IC in 1999 (although I'm sure I had this since I was in my late teens -- I'm now 32 -- but it wasn't diagnosed).

    I've been able to get by with IC with flare ups here & there that have been definitely disruptive to my life & frustrating, but I've been able to get by. However, I am now going through the worst flare up I've ever had and am very scared that it will never go away... I apologize if I'm being overly negative but at this point, I can't even leave the house, I'm going to have to withdraw from my Ph.D program (which I've worked at for 5 years) and I'm really scared nothing is going to help me, so I'm feelign very discouraged.

    What has happened recently is I experienced a flare-up where I go to the bathroom every 5 -10 minutes & the horrible thing is even after I've gone I don't have relief, not even for a second... My bladder feels constantly full. Has anyone else had this problem?? If so, how did you find relief? How long did it last?? I'm very scared because this is the first time its been this bad (not finding any relief 24/7 from this constant sense of having to go really bad), and the worry that NOTHING will help and how will I live life this way looms over me...

    I would so love to hear from anyone who's had this experience and who's found relief somehow.

    Thanks to all (the board seems wonderful!)

  • #2
    I'm assuming you hve already seen your urologist and had infection ruled out --- if not, that would be a good first step. Are you following the IC diet?

    If your uro isn't able to help, it may be that you need a referral to a pain specialist. It may take a while to get things under control again, but there is definitely hope for you.

    Sending healing thoughts,
    Stay safe

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    • #3

      I know exactly the feeling you are describing. I have had to self-cath some and I still feel full even after I'm sure there's nothing left in the bladder. I understand the frustration. I get worse when I have an infection so like Donna said I always get a culture when I think I feel one coming on.

      I noticed improvement in my symptoms last summer after being on Elmiron for several months. I also did pelvic floor therapy with a biofeedback probe and that seemed to help me not feel the urgency so bad. However, over the last few months I have gotten a flare and its all come back with a vengence.

      I do not reccomend that you start off with what I'm about to tell you because its a last resort option. I just had an interstim test where wires are put in my back to stimulate the sacral nerve. I've had it in for a few days and I've noticed a dramatic change in the feeling of urgency. I go pee and I feel empty for the first time in so long. I have also been able to go on my own with out cathing. I will not be doing this permanently though because my dr. thinks this will be enough to get my flare under control. We'll leave it in for 2 weeks if the wires don't move and then see how I am without it. I think this is only a possibility AFTER you have tried other therapies such as meds and instillations.

      Have you talked to your uro about this? He may want to do more tests to make sure there is no blockages. If you aren't getting help from him I would look for another uro. I have been very happy with my urogynocologist because he speciallizes in women's urology and I.C. I hope this has been at least validation that there are others out there with that same feeling. I wish you luck in finding treatment.



      • #4
        I use to be the same way i found that heparin and marcaine at home treatments help me the most with perocets 10.325. i hope you find a treatment that works for you soon i will be honest the dmso heparin treatments they gave me in the office gave me awful pain but since i do them at home and even my husband has done the treatments for me and he doesnt hurt me either. i think its because i'm more relaxed at home. I know those treatments at the office gave me nighmare flares but the onces at home work fine unless i have a uti. hope you find a treatment that helps you soon sending you hugs hope and prayers. grouphug
        Medicine taken daily or as needed:
        1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
        2. MS.Cotin 100mg 3x daily
        3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
        4. Fentanyl 100 mg Change every 48hrs.
        5. Gentamicin 80mg install after each rescue treatment
        5 Leviquin 500mg self start as needed.
        6. Klonopin 1 or 2 daily as needed.
        7. Prosed/DS as 1 every 6hrs as needed.

        I have IC, but IC doesn't have me anymore!


        • #5
          ((((((big hugs)))))) Sorry IC is taking over your life.....I know that just adds to the pain.. (((bigger hug)).

          Yes I was that bad once....what helped me was calcium, elmiron, and antibiotics...allong with treatments for Endo that took away my hormones.

          I think that lots of calcium even between meals was a big helper for me in frequency.... as far as fully emptying the bladder....I go stop....than try to start again before I leave.

          I hope something helps you or that someone can. Good luck. grouphug
          Faith, Hope, and Love,

          I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

          IC 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.
          or find me on facebook
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          [email protected] please contact me...I am here to help!


          • #6
            Dear Shelka:

            If only I did NOT know what you're talking about; unfortunately, I know it all too well.

            Elmiron helped me immemsley with the urination aspects. Unfortunately, it did nothing for the pain for which I take Dilaudid, the Duragesic-100 patch and Valium.

            Little worried because my wife works for a small company of less than 25 people and they are negotiating for this year's helath insurance.

            If they can't get a good deal, then I'll have to goin on PacifiCare or Secure HOrizons or whatever it's called.

            The big, bad bummer is that don't cover ANY brand name prescriptions even if there aren't generic(s) available! So, if the premiums are too high or the co-pays jump again, I'll be stuck with my Medicare thru the Pacificare which will force me to take out-of-date (Morphine was isolated before the Civil War; i.e. it's 150 years old!) meds that don't meet my needs. But I can't bankrupt the family, we already spend too much on my IC. Too much of everything in the family is concentrated on that.

            I pray they can get good terms, but I'm not holding my breath. Fortunately, Medicare pays for my doctor-copays, so I never have to make one of those.

            but I am scard I'm going to lose the patch. It's finally given me "plasma stability"; that is, the amount of pain killer in my system is contant and I don't have to worry, "Uh, when did I take that? When time did I take the MS Contin?" That was the problem with the Oxycontin. My plasma levels would end up all over the place and that was uncomfortable.

            Donna is right; listen to her. There is hope for you. It can't fix it, but there's things that can make it better. Given the goofy nature of IC, it may take considerable time and effort to find what works for you.

            Like you I've had IC for over 12 years, just a few years out of high school. I never had the chance to complete and education or start a career or learn a profession or a trade. In those 12 years I was fired from 20 jobs for missing to much work from IC.

            I felt like the biggest, most worthless failure on Earth. Even still, I fight these feelings. My wife brings home 3/4ths the bacon. It's not a chauvanistic thing, I feel inadequate because I cannot do the things I need to do to support my family.

            I have a couple of time's nearly reached my wits end. Fortunately, faith, love and my little girl's love and my wife's love pulled me thru.

            Remember: the demon can only take you if give him your hand.

            As long as you...

            Rage, rage against the dying of the light!

            You've still got breath in your body.

            God bless. And Don't Give UP!


            • #7
              Thanks to ALL of your for responding, it?s a real comfort to know people understand! Aslo, my heart goes out to those of you who are still suffering so much...

              I just came back from the hospital. My nurse put a catheter in (1st time) to see how that might help ? she took a urine sample to test for infection but I?m about 95% sure that it will be negative ? in the past 6 years I?ve never had one. Unfortunately, that awful feeling of urgency is still there even with the catheter & my muscles are all tight & tense b/c I?m afraid to move around (since every time I do I can feel the little balloon & it?s just so strange and I don?t want it to irritate my bladder even more!). Even with the catheter in, I still have the urge to go the bathroom!! I don?t know if that?s normal or not??

              A bit more background on me & to answer some of your questions: I?ve seen 3 urologists, my current has the best ?bedside manner? but he?s suggested that if the hydro distention doesn?t work for me I?ll have to go see another one here in Montreal who is doing more of the research & experimental treatments ?something to do with a derivative of chili peppers as an instillation, my very simplistic understanding of it is it?s based on the idea that it being so caustic it will kill some of the nerves)

              I tried Elmiron for about a year and its very hard for me to say if it worked or not b/c I had the usual little flare-ups & remission as usual, I?ve also had DMSO instillations for the past 4 years on an on again-off again basis (whenever I feel something coming on, I just call my nurse & pop in for a treatment). Again, I don?t know if this is really what works or not b/c sometime I get better, sometimes not. It?s really all a mystery for me, it really does seem to come on (& go away) just out of the blue. I have been to the Montreal General Pain clinic and they assessed me but decided I should go for the hydrodistention first, then come back to see them. I didn?t go right away as I had planned b/c things improved for me for quite awhile with only little flare ups every once in awhile. I?ll going this Tuesday my first hydro ever & am really hoping I?ll be one of the 35% that gets relief (relief lasting up to ~ 6 months sounds almost too good to be true!).

              As for the interstim, I believe my doctor mentioned it as possible next step IF the hydro doesn?t help. I?m really pleased to hear that it?s working for you Rachel -- it must be quite a relief (excuse the pun!!) to find something that does the trick ? it?s also great to hear that you don?t have to have it installed permanently.

              Well, thanks again for your replies, I wish each & everyone of you the very best ? I know how this disease can take over one?s life?I can only imagine what some of you have been through. AS for myself, I've spent so much on student loans in order to get my BA,MA & now almost Ph.D in Educational Psychology, and just when I'm about to put it all to use and finally start living...this!

              One fortunate thing is b/c I live in Canada, I'm very very lucky in terms of health coverage. As a Canadian, almost everything is covered automatically by medicare. One doesn't have to worry about insurance plans or not being able to get treatment because of money. I really do feel for you pain-man.

              If anyone wants to email me privately, I'd be more than happy to chat & help in whatever way I can!!

              Best wishes,


              • #8
                Sorry about the message above...I typed it in my wordprocessor b/c I knew it would be long & all those question marks should be commas!! oops! jester