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  • New to forums, pessimistic about instillations

    Hi everyone

    I have had IC for at least 8 years now, but I am new to the forum. I have carpal tunnel syndrome in both hands, so I can't post much.

    Due to my hands, I am not going to list all of the things I have done to eliminate IC symptoms. I'll just say I am currently on an extremely limited IC diet to control pain, frequency, and urgency. I eat no processed food, additives, preservatives, or foods that I know hurt. I have tried almost everything else I have heard of, except for Botox, the new needle-in the-ankle electric thingie, and anything that is in clinical trials. I have been through all the tests, been through the gyn routine, everything.

    Diagnoses:

    Chronic Interstitial Cystitis
    Vulgar Vestibulitis
    Pelvic floor dysfunction
    Possible endometriosis
    Ovarian cysts
    PMDD/Painful periods
    IBS

    Other diagnoses:
    Sacroiliitis
    Bulging discs at L4 and L5
    Cubital and carpal tunnel syndrome bilateral
    Bilateral chondromalacia, plantar fasciitis, and hyperpronation
    Chronic daily migraines
    Musculoskeletal pain in neck from car accident
    Etc I can't remember all of it!
    GERD


    My primary symptom is pain, and it is severe. Without meds, I have level 8-10 pain in the vaginal/urethral area and in the pelvic region.

    I had my first Elmiron bladder instillation last week, and really don't want to go back for another. It was so painful that I had a return of the level 9 pain and just laid in bed. I didn't sleep the night after the treatment. The pain did not go away for a whole 36 hours. Then, I had flares that kept me awake all week. A small amount of spice or food that would normally cause minimal or no pain caused agony for me this week.

    I just don't see a reason to return to the uro other than to see if I have a UTI. I don't want to put up with 8 weeks of instillation agony for 1-2 levels of pain difference for 4-6 months. The math just doesn't add up. That, and when you take the placebo effect out of the Elmiron studies, the drug only helped like 15% of people. The odds just seem against me, and I don't want to put myself through 7 more weeks like this one just to get minor changes in pain relief (according to Elmiron clinical studies).

    Can anyone fill me in on their own experiences? I'm slightly curious why, when I google Elmiron, I seem to come up with more positive forum threads than negative ones, even though the drug statistically only helps a select few.

    If people have had awful experiences like mine, I need to hear it, so I don't feel like a giant baby.

    Thanks for reading.
    Miss Mittens

    Angry but silly dog-loving hausfrau with love of fashion

    Diagnosed with: (not counting misdiagnoses)
    IC
    Vulvar Vestibulitis/Vulvodynia
    Pelvic Floor Dysfunction
    IBS
    GERD
    PMDD
    Endometriosis (not confirmed)
    Ovarian Cysts
    Chronic Migraines
    Carpal and Cubital Tunnel Syndrome
    Sacroiliitis/Arthritis
    Degenerative Disc Disease/MusculoSkeletal Pain
    Chondromalacia
    Plantar Fasciitis
    Hyperpronation
    Asthma
    Allergies
    Ovarian cysts
    Chronic UTI's

    Tests:
    Cystoscopy (2)
    No ulcers present, patches of inflammation present
    Urinalyses (54,00)
    Usually neg.
    Vaginal Exams/Pap Smears (1 million)
    All negative
    Pelvic and Vaginal Ultrasounds (3)
    Negative except for cysts
    Bloodwork
    All normal

    Treatments tried for IC:
    Acupuncture/Chinese herbs
    OTC herbs (various)
    Pelvic floor massage
    Pelvic physical therapy
    Amytriptyline
    Nortriptyline
    Carbamazepine
    Ditropan
    Neuropathic pain patches
    "Try some extra-strength Tylenol"
    Tui Na Chinese massage
    Chiropractic
    Western massage
    Lyrica
    Wellbutrin
    Opiate meds
    Lexapro
    Celexa
    Neurontin
    Topamax
    Premarin Cream for VV
    IC diet since 2004, extreme IC diet since 2009
    Bladder Instills of Elmiron

    Working now:
    Neurontin
    Celexa
    Opiates
    Nortriptyline
    Topamax (migraines but helps IC slightly)
    Inderal for migraines
    Extreme IC diet: no additives (preservatives, vitamins, spices, sweeteners, etc) allowed in any of my food. Water only for beverage. Diet is so limited I have lost weight and feel better. Organic food when I can afford it.
    Exercise daily including walks
    Meditation
    Heat applied to belly
    Some yoga poses
    Support network
    Husband, family, dogs and cat

  • #2
    First of all...Welcome! Secondly, don't ever think you are a big baby. This pain is real and everyone has their own tolerance to pain. When I was first DX'd I was always at a pain level 10 (+). I am really sorry to hear you are in such pain. I know how you feel. Yes, I would check to see if you have a UTI.

    I did however, have success with the elmiron instills. I don't know about the placebo effect. My doctor had me bring in one of my elmiron pills from home and she would add lidocaine and bicarb to the mixture and install it. What helped me get through the first few instills was she put some lidocaine in me first, and I would lay still for about 10 minutes and then she would come back in and instill the mixture with MORE lidocain. This just might not be what works for you.

    You have a lot going on besides IC. The endometriosis and the cyst don't help. I had both of those also. I am older...I had a hysterectomy when I was 35. As do I, have PFD. This alone can put into a vicious cycle. It stinks.

    All of this I would imagine stresses you out. Which is my #1 cause of flares.

    I can tell you this, I found what worked for me. I am confident you will find what works for you. You might have to go through a couple of doctors to find one that listens to you and fully understands IC and the other things that you have.

    Sending healing thoughts and hugs.

    -Louann
    Minds are like parachutes-they ony function when they are open.
    -Thomas DeWar-



    ICN Newbie Volunteer


    *ICN 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.

    Comment


    • #3
      Mittens13, It sounds like you have very severe IC. Look into cyclosporine. It is a pill. It definitely is not for everyone as it has some serious side effects. However, the results with severe IC have been amazing. Good luck! P.S. I agree with you on the frequent instills for minimal relief

      Comment


      • #4
        Thanks!

        Thanks guys!

        Barb, I kind of suspected my IC was bad, but I never want to say so bc I have a list of conditions a mile long, and I frequently feel like a hypochondriac.

        My dog takes cyclosporine for his allergies! I am familiar with the drug. I will mention it tomorrow.

        Thanks, I don't know whether I am going to get the second instill. I am going to be brave and go to the appointment anyway, and talk to the doc. I will see if we can agree to keep the pain to a minimum.

        THANK YOU SO MUCH!
        Miss Mittens

        Angry but silly dog-loving hausfrau with love of fashion

        Diagnosed with: (not counting misdiagnoses)
        IC
        Vulvar Vestibulitis/Vulvodynia
        Pelvic Floor Dysfunction
        IBS
        GERD
        PMDD
        Endometriosis (not confirmed)
        Ovarian Cysts
        Chronic Migraines
        Carpal and Cubital Tunnel Syndrome
        Sacroiliitis/Arthritis
        Degenerative Disc Disease/MusculoSkeletal Pain
        Chondromalacia
        Plantar Fasciitis
        Hyperpronation
        Asthma
        Allergies
        Ovarian cysts
        Chronic UTI's

        Tests:
        Cystoscopy (2)
        No ulcers present, patches of inflammation present
        Urinalyses (54,00)
        Usually neg.
        Vaginal Exams/Pap Smears (1 million)
        All negative
        Pelvic and Vaginal Ultrasounds (3)
        Negative except for cysts
        Bloodwork
        All normal

        Treatments tried for IC:
        Acupuncture/Chinese herbs
        OTC herbs (various)
        Pelvic floor massage
        Pelvic physical therapy
        Amytriptyline
        Nortriptyline
        Carbamazepine
        Ditropan
        Neuropathic pain patches
        "Try some extra-strength Tylenol"
        Tui Na Chinese massage
        Chiropractic
        Western massage
        Lyrica
        Wellbutrin
        Opiate meds
        Lexapro
        Celexa
        Neurontin
        Topamax
        Premarin Cream for VV
        IC diet since 2004, extreme IC diet since 2009
        Bladder Instills of Elmiron

        Working now:
        Neurontin
        Celexa
        Opiates
        Nortriptyline
        Topamax (migraines but helps IC slightly)
        Inderal for migraines
        Extreme IC diet: no additives (preservatives, vitamins, spices, sweeteners, etc) allowed in any of my food. Water only for beverage. Diet is so limited I have lost weight and feel better. Organic food when I can afford it.
        Exercise daily including walks
        Meditation
        Heat applied to belly
        Some yoga poses
        Support network
        Husband, family, dogs and cat

        Comment


        • #5
          Best wishes for tomorrow's appt. Hope you find some answers for relief.
          Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found answers...so can you...keep the hope.

          11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
          8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
          8/2010 Surg gallbladder
          TREATMENTS (updated 4/15)
          IC Diet since 8/2009 (Able to vary 4/15)
          Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
          Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
          Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
          *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
          Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
          PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret

          Comment


          • #6
            Thanks for the feedback! Going to try one more instill.

            Hi everyone!

            Thanks for reading and posting. I needed the support and feedback. I was so sure the doctor was going to insist on more instillations. (this is a new Uro for me).

            Well, he was very kind and said he wasn't going to push the instills on me. I said I would be willing to try again if we could minimize the pain. We are going to try again in 2 weeks with a smaller catheter, and I am to come into the office on Pyridium and Lidocaine applied topically at the site of the urethral/vulvar pain.

            If the next one doesn't work, We will move on to new treatments. He provides the transcutaneous tibial nerve stimulation treatment which is supposed to help frequency and urgency. Even though pain is my primary symptom, I could use help in those areas to reduce my medication load. If that doesn't work, I will talk to him about other possibilities.

            I have already used up my Medicare prescription drug benefit for the year, can you believe that? Whoa!

            Thanks again ladies, you were all a great help.
            Miss Mittens

            Angry but silly dog-loving hausfrau with love of fashion

            Diagnosed with: (not counting misdiagnoses)
            IC
            Vulvar Vestibulitis/Vulvodynia
            Pelvic Floor Dysfunction
            IBS
            GERD
            PMDD
            Endometriosis (not confirmed)
            Ovarian Cysts
            Chronic Migraines
            Carpal and Cubital Tunnel Syndrome
            Sacroiliitis/Arthritis
            Degenerative Disc Disease/MusculoSkeletal Pain
            Chondromalacia
            Plantar Fasciitis
            Hyperpronation
            Asthma
            Allergies
            Ovarian cysts
            Chronic UTI's

            Tests:
            Cystoscopy (2)
            No ulcers present, patches of inflammation present
            Urinalyses (54,00)
            Usually neg.
            Vaginal Exams/Pap Smears (1 million)
            All negative
            Pelvic and Vaginal Ultrasounds (3)
            Negative except for cysts
            Bloodwork
            All normal

            Treatments tried for IC:
            Acupuncture/Chinese herbs
            OTC herbs (various)
            Pelvic floor massage
            Pelvic physical therapy
            Amytriptyline
            Nortriptyline
            Carbamazepine
            Ditropan
            Neuropathic pain patches
            "Try some extra-strength Tylenol"
            Tui Na Chinese massage
            Chiropractic
            Western massage
            Lyrica
            Wellbutrin
            Opiate meds
            Lexapro
            Celexa
            Neurontin
            Topamax
            Premarin Cream for VV
            IC diet since 2004, extreme IC diet since 2009
            Bladder Instills of Elmiron

            Working now:
            Neurontin
            Celexa
            Opiates
            Nortriptyline
            Topamax (migraines but helps IC slightly)
            Inderal for migraines
            Extreme IC diet: no additives (preservatives, vitamins, spices, sweeteners, etc) allowed in any of my food. Water only for beverage. Diet is so limited I have lost weight and feel better. Organic food when I can afford it.
            Exercise daily including walks
            Meditation
            Heat applied to belly
            Some yoga poses
            Support network
            Husband, family, dogs and cat

            Comment


            • #7
              Happy to hear you are doing better. The lidocaine really does help a lot. Good luck with everything. Oh yeah, I forgot to mention that about the catheters. They used an infant one on me.

              Please keep us posted.
              Last edited by hoping4acure; 09-25-2011, 09:22 AM. Reason: added to post.
              Minds are like parachutes-they ony function when they are open.
              -Thomas DeWar-



              ICN Newbie Volunteer


              *ICN 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.

              Comment

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