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  • Frustated

    I was diagnosed with IC on February 22, 2007. During this time they also did the stretching of my bladder with the DSMO. They found that i also had a very small bladder. Holds only 200 cc. They were able to stretch to 250, but it did not work. I have tried tons of medications for the last 3 years and they just thought i had OAB. Tried to tell them it was something else. Anyway duri g the stretching of bladder they found all of this. Doctor said it was pretty bad. He started me right away on the Elmiron, 100mg, 3 times a day. Need to take for 4 to 6 months to see if it works. My Urologist has done all he can for me. He referred me on to Kansas City to Dr. Greibling. It took me 4 weeks to get into see him. He is the top urogynocologist in Kansas. I am going to have an Interstim Therapy Implant, but right now am waiting for Insurance to approve. This was to be sent to insurance on the 19th, have been staying in contact with insurance company and the insurance girl from the hospital. Doctor went out of town for conference, only got back last Friday, the insurance company just recieved faxed info yesterday the 27th. The girl at insurance said she would fax a priority to the committee when she faxes the rest of the information. I am to call her Monday to find out anything. I had a bad flare up that started Sunday and i went into work long enough on Monday to do payroll, then went home. The only time i don't hurt is when i take a hot shower. I did that several times on Monday and on Tuesday, went home at noon then. I am back to work today (Wednesday) still in a lot of pain but trying to ignore, i just can't miss work all the time. Nothing seems to help and it is just good to know that their are others going through what i am. No one really knows what you are going thru, you can try and explain it but if you haven't been their you really don't know. They are supportive and my husband helps a lot, with stuff around the house and cooking meals and etc. I just sometimes really don't feel well. So right now i am in the waiting game. I have to pick up prescriptions on Friday for Amitriptolene and Elmiron, which are going to cost me. I don't have prescription on my insurance but do have 125 Plan, I have already almost used up my 2400 i alotted for the year. Well thanks for letting me vent. I enjoy reading the post from everyone. Well i have made this long enough. Till later.

  • #2
    HI! Sorry to hear you are having such a time with insurance, dr.s etc. IC makes life difficult.....that's for sure! I hope you get the interstim ok'd and it helps you!
    Elmiron and Elavil has helped me tremendously! Elmiron isn't cheap.....luckily Elavil is.
    So you having the interstim before trying medication? That's quite a jump.
    Good luck to you! Roxie

    Double Spinal Cord Stimulator surgery 8/09
    Unsuccessful MiniArc sling surgery 12/07
    Dx'd Hypothyroid
    Dx'd Chronic Axonal Neuropathy & Myopathy
    June 2007
    Dx'd IC May 2006 (after suffering for 25+ yrs!)
    First Cysto 1979
    First Hydro 1981 (Many treatments since then!)
    Collagin"Durasphere" injections for urethra
    Gall bladder surgery Aug. 2004
    Gastric Bypass Dec. 2004
    Dx'd: Barrett's Esphogus July 2004
    Dx'd: Vaginal Atrophy 2005
    Bladder surgery 2000
    Dx'd: IBS 2000
    Hysterectomy (fibroids) 1999
    Laminectomy 1989
    Dx'd: Degerative Disk Disorder 1989

    For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
    I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

    Comment


    • #3
      Can you get a referral to a pain clinic? Many of them will prescribe narcotics, which is what a lot of us need just to be able to function. And the good news is, generic narcotics are usually relatively cheap.

      I'm so sorry you're in the waiting game; that's probably the worst stage.

      I also think it's unusual for them to go right to interstim (which does not help with pain, most of the time, but only frequency), before giving meds a chance to work. I've never heard of that. Interstim requires two surgeries and recoveries; it's a pretty big deal.

      Well, whatever you do, I wish you good luck and much less pain!
      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
        IM so sorry to hear you going threw so much. Its hard to face daily I know. Its wonderful you have family suport.
        Im not sure where you live, But in my state, there is a prescription help, threw the family independant agency, its where people go to get medicaid, or if your pregnat they help pay the insurance, and where you go to get food asistance.
        I went there before i got my insurance, they offer a prescription card, no matter what your income is, and its so much cheeper. Maybe your state had it. It might be somthing worth looking into to help cover some of your costs.
        OR go to the health department in your town and tell them you need help with medican coverage. I am sure they can offer some help or information, and it wouldnt be determand I think by your income.
        Good luck and i hope you can get soem relief. Do any of your docotrs have you on muscle relaxor like Elevil or Flexeril? THEy both seem to help also. THe Elivil helps a lot, if you are on it and its not helping some times it takes increasing the dosage to get the proper relief. Im on 150mg right now and also the flexeril is 10mg. My one doctor said to me some women are on even higher dosages, it just depends on each person.
        I can relate to you missing work.I have been laid off from work for a month now. Before that i was missing 1-2 weeks of work. WHich now looking for a job, I just dont know what to do about that either.It makes me worried thats for sure. I can really relate to you. Hang in there, and i hope you will be feeling some relief soon.
        take care
        stacy


        Current Conditions:
        Endometriosis,1995
        IC,Feb 06
        IBS-C

        Prenecious Anemia
        Stomach Ulcers
        Duodenitis
        Acid Reflux
        Low Blood Sugar
        Hypothyroid
        Migrains

        Surgeries
        Laporoscopy-1995
        Gaul Bladder-1996
        Laporoscopy-2005
        colonoscopy2005
        cysto/hydro-2006
        cysto/hydro-2007

        endoscope-2007

        Meds:
        Elmiron,100mg 2am 2pm
        Seasonique,1 night(helps control pain for Endo)Provera, 10mg 1 night
        Elavil, 150 1pm
        Flexeril, 10mg 1 night(was to be 1 am also but makes me to sleepy)
        Prilosec,20mg 1am 1pm
        Zoloft,100mg 1 pm
        Topamax 25mg 1am 2pmCyannobalamin(b12), 1 injection every 2 weeks
        Reglan, 10mg, 1 3xday with meals-for duonditis
        Ultram 50mg 1 every 4hrs as needed for pain
        Pyridim,100mg as needed
        Vicodin 5/500 as needed for pain
        Heating pad
        Ice Pack
        Arthritis Pain Equate brand 650mg usualy 2 at a time
        Stool softeners w/stimuli, 2am 2pm[/COLOR]

        Hopefuly no more gets added to the list!!!

        I wish the best for all of you and hope the days with pain are few. I wish you peace and calmness... for we all need it, with out it... the pain is worse.
        Try to take the best care of you that you can. When you are not happy with the care you get dont hesitate to get the help you need. Sometimes a 2nd opinion can give the calm and peace which you are seeking.
        My prays go to all of you. For I know there are many who are have many bad days and need a shoulder.. Always remember this site, for its made a huge differance to me and many people. Here you can find the the ear your looking for when you just need to vent.
        When your not looking for Im so sorry and I have no idea what can help you. Here we understand the pains the suffereing and most of all the Constant frustration. For anyone who needs it.. I will do my best to be the ear who can listen and help how ever I can. All my best to all of you.
        Dont forget to take care of you!
        Take care

        Comment


        • #5
          I'd have to agree that you should be trying other treatment options before moving to the interstim. Hopefully the amitryptaline will help with your pain. It does help many ICers.

          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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