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  • Lurker turns member - need to break the silence

    Hello all!
    I am new to this community, although I have been lurking for over a month, gathering much knowledge from your posts.

    I finally joined, and wanted to introduce myself and tell my story:

    I am 28, and married 5+ years now, with a lifetime of UTI's and kidney stones (over 7 so far since I was 16). 2010 I started having symptoms of IC, thinking they were UTI's - but the "tummy bloat" is what threw me off - that and no urethral pain. My husband and I move around every 3-4 years due to his work, and being new to the SpaceCoast area of FL, I found a local Urologist - Prodromos Borboroglu. Supposed to be one of the "best" urologist in the area. Well, after my full experience with him, I think his field of expertise is NOT IC.

    After a month of different tests, he Dx'ed me with IC. I DO believe his diagnosis. It's the treatment I've been having difficulty with....

    I began Sanctura for the spasms/urgency and Elmiron in 9/2010 and it solved all my problems.....until over the course of 6 months 50% of my hair fell out, broke off, and became almost irreversibly damaged to the core. I had to quit the Elmiron (as my studies showed no hair loss issues with Sanctura).

    FFWD - August of this year, 2011 - I quit Elmiron, and stayed on Sanctura. My Uro was NOT happy about this, and not open minded at all to "alternative methods" like Cystoprotek, Aloe Vera, nothing! He offered me nothing, and I left there empty handed and lost.

    That's when reserach led me to IC-Network! After a few weeks of study, I ordered and started taking Cystoprotek and Desert Harvest Aloe Vera capsules. I hoped the weaning/transition would be smooth - but it is not. Within the month, my symptoms have returned, and NOW I have to follow the IC Diet, which I have never had to do before.

    I returned to my Uro, telling him that I AM taking these new "non FDA regulated" meds, with the Sanctura, but the Sanc isn't helping enough. He was not open minded to anti-depressants, and skeptical about antihistamines.
    I had to PUSH him into giving me other meds, and just this weekend began Enablex and Atarax to help the Cystoprotek and Aloe Vera.

    I am thinking that none of these meds have been in my system long enough to know if they are going to work, and bring me back to normal. But I don't know how long is long enough to wait, before moving onto another combo.

    In conclusion - I feel like I am floundering in the water, guessing at which direction to take. I will NOT be going back to Dr. **** in Melbourne, and now have to seek out a new Uro who understands how to treat IC! I am willing to drive to Orlando.

    If anyone has any suggestions on a great Uro - PLEASE message me or respond. If anyone has any comments on my ongoing plight - commiseration or thoughtful hugs are always welcome. Just trying to find out my "dynamic combo" and eat each day without winding up in stinging, distended, urgency riddled pain.

    Thank you if you read all of this...... you deserve a cookie!
    Last edited by QueenMellyBee; 01-24-2012, 04:25 AM. Reason: Removed name of physician from negative comment.

    Dx'd IC : 9/2010 Dx'd PFD : 4/2012

    Currently on:
    *Back on Elmiron [100mg] + *Elmiron/Bicarb/Lido INSTILLS 2x weekly----*Nortrel Birth control--*MagOx400--*Nitrofurantoin (1 after intercourse to avoid UTI's)--*Prelief--*Prosed--*Clonizapem--*Flexeril 10mg--*Zyrtec
    *PT for IC&PFD - Both hands on/all-up-in-there approach, and the breathing techniques/stretching approach--- helpful, but difficult to continue at home and make time in daily life

    Didn't work:
    *Nexium ,*Sanctura , *Enablex ,*Atarax ,*Allegra,*Arginine
    *Elavil (2 pills and I passed out, cold on the floor....)
    *Hydrodistention - Done by the best Dr, but did not prove to relieve any pain over long term at all
    *Gabapentin (DANGER - Caused suicidal thoughts, inconsolable crying & erratic behavior when mixed with Clonazepam & Flexeril)

    Hair loss/thinning/breakage Elmiron 300mg daily caused to my hair.... it is NOT a slight side effect

  • #2
    to the IC Network. If you scroll to the top of this page and click on "Professionals" you may find a physician in your area. There are several support groups listed in Florida --- they can be an excellent resource for finding a physician.

    I hope you feel better soon.


    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


    • #3
      Hi, "Queen" ~ So sorry this is all happening to you. Sure hope you find a great doc in your area and you find relief soon.

      Take Care.....
      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


      • #4
        and I hope you find relief soon.
        IC diagnosis 3 weeks ago.
        Vesicare 10 mg once daily
        IBS and Gerd-Zegerid
        IC diet
        Elmiron 100 mg three daily
        Hydroxyzine 25 mg at night
        Amitriptyline 10mg at night
        Diovan 60/12.5 daily
        Topral 50 mg daily
        Zoloft 100 mg at night
        Klonopin .5 twice daily

        Comment


        • #5
          Hi there,

          I would encourage you to find a different doctor. Definitely look at the "Professionals" listing on this site, as Donna mentioned. Before this happened, I was never one to doctor-hop, but I'm already on Urologist #2. The first urologist I saw had never heard of Cystoprotek either, and basically felt that the hydro is the only way to go.

          Because there is no one clear method of treatment for everyone, I think it is an unfortunate fact that many of us have to "shop around" to find the best doctor/treatment combo.

          The diet is difficult. But, it did help me pull out of the three week flare I was in when this all began. Since then, I've added Cystoprotek and DH Aloe--both have been beneficial. In July, I also began Atarak--very helpful! I feel much of my discomfort is due to allergies.

          Have you considered having allergy/food sensitivity testing? I recently discovered that I'm allergic to cow's milk. I ADORE cheese and ate it everyday for most of my life. But, eliminating it has helped too. I'm getting a comprehensive allergy test in October.

          Last week I started Elavil. It's too soon to see much of a difference, although I am sleeping better at night.

          My rule of thumb is to stick with a supplement/prescription for a month. If I don't see an improvement, then I move on to something else.

          I also highly recommend reading "The Better Bladder Book" which is sold in the ICN shop. I read it my second month into this and it has a lot of useful info, in my opinion.

          Take care, and I hope you feel better soon!
          March 2011-Symptoms began
          May 2011-Tentative diagnosis by OB/GYN
          October 2011-Confirmed diagnosis -- IC/PFD

          Current treatments:
          Elmiron- 300 mg (Began 12/11)
          Hydroxyzine- 50-75 mg (Began 7/11)
          Tizabidine- 2mg 3xTID, if needed (Began 12/11)
          IC Diet-Began 5/11
          Pelvic Floor Therapy-Began 12/11

          Current Supplements:
          Cystoprotek
          Magnesium
          Fish Oil
          Biotin

          Comment


          • #6
            Thank you so much ladies for your thoughts and welcome.

            I have looked at the Professionals list provided by IC-Network, but unfortunately, there is only 1 that my insurance covers - so I am hoping to find more people with Orlando/Vero Bch/Kissimmee etc. recommendations (while I background check reviews on the provided Doc, of course).

            I think since my system has only really been on Cystoprotek and DH Aloe vera for about a month, it's too soon to tell. I was 1/2 dosing it while coming off Elmiron - so I guess that part didn't count. I am now taking the full recommended doses, and hoping that things kick in well.

            I really don't want to have to resort to hydro treatments, as my pain isn't astronomical, and usually fades by the next day to an annoying, stinging, urgency with distended belly........ALWAYS the distended belly. First things first - gotta find a new Uro to f/u my new meds with.

            To answer a question, I have never been tested for any FOOD allergies, only the usual scratch back mold, grass, dust type tests. With what kind of doc do you get a food allergy test done - an Allergist? Haha. I find it odd that only in the past year of my life, that ANY food would all of a sudden cause allergic reactions in my bladder, and nowhere else?...... I am almost skeptical at the thought.

            Anyways, keep the advice coming. I drink it all in

            Dx'd IC : 9/2010 Dx'd PFD : 4/2012

            Currently on:
            *Back on Elmiron [100mg] + *Elmiron/Bicarb/Lido INSTILLS 2x weekly----*Nortrel Birth control--*MagOx400--*Nitrofurantoin (1 after intercourse to avoid UTI's)--*Prelief--*Prosed--*Clonizapem--*Flexeril 10mg--*Zyrtec
            *PT for IC&PFD - Both hands on/all-up-in-there approach, and the breathing techniques/stretching approach--- helpful, but difficult to continue at home and make time in daily life

            Didn't work:
            *Nexium ,*Sanctura , *Enablex ,*Atarax ,*Allegra,*Arginine
            *Elavil (2 pills and I passed out, cold on the floor....)
            *Hydrodistention - Done by the best Dr, but did not prove to relieve any pain over long term at all
            *Gabapentin (DANGER - Caused suicidal thoughts, inconsolable crying & erratic behavior when mixed with Clonazepam & Flexeril)

            Hair loss/thinning/breakage Elmiron 300mg daily caused to my hair.... it is NOT a slight side effect

            Comment


            • #7
              The allergy tests are worth looking into. I developed a severe allergy to peanuts at age 28 and a very severe allergy to fish & shellfish at age 30. The allergist says I'm also mildly allergic to legumes, soy, and treenuts. She says I can still eat those things, but not in large amounts & that if I begin to notice symptoms, to discontinue them. I discovered that avocado makes me flare and itch and so do latex catheters - turns out they're related, who knew that? So now I avoid both. I had lots of food allergies as a baby, but outgrew them (grew up eating peanut butter sandwiches and fish sticks without a single issue, then suddenly became allergic). All I did was the scrach tests on my back and follow up tests by blood draw for anything positive on my back.
              Hope that helps and that you start feeling better soon,
              Kadi

              -------------------------------------------------------------
              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.
              ------------------------------------------------------


              New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
              Source - Pinterest
              "


              Current treatments:
              -IC diet
              -Elavil 50mg at night
              -Continuous use birth control pills (4-5 periods/year)
              -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
              -Pyridium if needed,
              -Pain medicine at bedtime daily, as needed during the day several times per week
              -Antibiotic when doing an instillation to prevent UTI
              -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
              -Dye Free Benadryl 50 mg at bedtime
              -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
              -Managing stress= VERY important!
              -Fur therapy: Hugging the cat!

              Comment

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