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  • #1

    Area of pain moving around....help!

    For the 5 months I've been plagued with IC, I've always had pelvic pain with no frequency and/or burning. SUDDENLY since my Thursday rescue instill in the doctor's office, I've had urethra burning and spasms and NO pelvic pain.

    I don't know what is worse, but I think the urethra spasms are worse.

    Does this happen to anyone? What could have caused this? Can instills themselves cause this?

    Factors that could contribute (what do you think?)

    -I had my period heavy the day of my instill and used a tampon for the first time in 5 months. On Tuesday before my instill I had an internal massage by the PT.

    -Nutrionalist has me eating all kinds of greens. Kale, broccoli rabe, bok choy - could these in themselves be causing me problems?

    I used the aloe and msm gel for 2 days. I thought it worked wonderful but I'm still flaring down there. I'm wondering if the gel combo could be making it worse not better.

    I hate IC. Hate it hate it hate it hate it hate it. I read on the internet today that a patient's quality of life living with IC is comparable to someone in stage end renal failure. Do you think thats true? Will I ever be pain free??

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  • #2
    I'm sorry you're feeling so horrible. I've only been cathed a few times and it did cause some burning for me but I have uretha burning alot of I don't drink a lot of water so it's something that I'm used to. I wish I had more advise for you but I would say it could have been your period or the cath. Do you have any azo? Anytime I really start burning that is the first thing that I run for and up my water intake alot and that seems to help me. I hope that someone else comes along with some more advise and hope you start feeling better soon.
    Christine



    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus

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    • #3
      The tampon could be the culprit. The last time I tried to use one, I went into a flare-up almost immediately.
      Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
      Wishing you happiness and good health, and all the best out of life.

      Peace, Carolyn
      ___________________________________________________

      Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


      On the Beach with IC

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      • #4
        I thought it could be the tampon too - it was irritating to pull out. Do you think it could cause 4 days of discomfort though?

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        • #5
          Oh I definitely know where you are coming from!! I had my first instillation 2 weeks ago, and I did feel relief from my normal bladder pain (not 100% but definitelly significant!) for nearly 2 days. But I couldn't even enjoy my short-lived relief because my urethra was burning for 4 days!!! It was terrible. I have a very narrow urethra, and even though they always use the tiniest baby cath on me, it never helps. I bleed every time But on Tuesday, I requested them to use the pain-relieving gel I heard some other women talk about.. and they didn't have "the good stuff" but they did have some gel that would slightly relieve the pain. Well it definitely made a difference. It still hurt during the precedure, but afterwards there was almost no burning. I always wipe myself before redressing, and I could feel a slightly numb feeling. I was so appreciative Next week they said they will have "the good stuff" and so I am very excited about that. I would definitely ask your doctor to use the gel during the cath, instead of him just telling you to use it later. It definitely made a big different to me. And my little tiny urethra was thankful
          I am Jenny.
          "Karma is affiliated with the Neopagan law of return or Threefold Law, the idea that the beneficial or harmful effects one has on the world will return to oneself."

          Dx:
          -UTI's and Kidney infections: Since 6 months of age
          -HPV: November 2005
          -Advance high-grade pre-cancer cells found in cervix: January 2006
          -LEEP procedure: January 2006
          -IC: January 2007

          Medications (Began Treatment 3/27/07):
          -Elmiron 100mg 3 x per day
          -Elavil 25 mg
          -Hydroxyzine HCL 10mg
          -Sanctura 20 mg 2 X per day (added 07/24/07)

          Weekly Instillations @ Doctor (Starting 07/31/07 instillations will be performed by self at home - Wish me luck!)
          -20cc Lidocaine 2% Plain
          -2cc Sodium Bicarbonate 8.4%
          -1cc Heparin (10,000 units/cc)

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          • #6
            About the tampon -- oh, yes, it could certainly start off a reaction lasting four days or longer. Once you have irritation and pain, it tends to self-perpetuate for a lot of us, anyway. Just take a look around the boards, and see what people have succeeded with for urethral pain.

            I agree, the urethral spasms I get (rarely, thank goodness) are really worse than the bladder pain. It's a sensation I could not imagine before I had one; could not mistake for anything else when I did have one; and could never adequately describe to anyone who hasn't had one. OW!

            I hope it's getting better.
            Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
            Wishing you happiness and good health, and all the best out of life.

            Peace, Carolyn
            ___________________________________________________

            Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


            On the Beach with IC

            Comment

            • #7
              just had an instill as well...

              and i'm flaring NONSTOP!!! i was bad before...but now the urethral spasms are 100,000x worse and i'm having a hard time peeing!!! the nurse said she could feel the bladder spasms as she was putting the instill in...btw they don't even use a catheter w/me. they use a PEDIATRIC FEEDING TUBE and it still hurts like a u know what. i'm NOT having another instillation done that's for sure!!

              i wish i had words of advice for you...i don't. just wanted to say i know how you feel. the urethral spasms are worse than bladder spasms (for me anyways). just hoping i don't get a uti from the instill.

              sigh.
              (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

              Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

              I'd like to be on House, MD as a medical mystery.

              Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

              Connor & Mommy by the tree:


              Connor with Santa...so happy!


              I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

              Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

              I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!

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