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I have no idea what to do..HELP

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  • I have no idea what to do..HELP

    I don't know what to do? I have such severe pain that will not stop.
    My doctor does not know what else to do for me.
    I urinate every 5-10 minutes around the clock. It has been like this the last month. I had a catheter in the last two weeks as the doctor said
    this would help me rest. I just had the catheter out for a day and because my
    frequency is so bad the doctor said I should have the catheter put back in.
    I have tried numerous medications and the doctor has said that he has exhausted all the resources he knows. He doesn't know what else to do for me. I was in the hospital for 5 days a couple weeks ago just trying to control the pain and they had a catheter in than also. I haven't been able to work for many months now because of my endometriosis surgeries and the IC.
    I just don't know what to do. I use the heating pad and ice packs every day. I take baths several times a day.
    I can not take being so sick already and no doctors able to help me.
    My bladder is always in spasms. When the catheter is in it leaked all the time and the doctor said it was from spasms.
    I have tried every med available for bladder pain and spasms according to my doctor.
    I just want an hour without pain and having to urinate.
    What do I do? I am ready to give up already.
    I will travel anywhere to find a doctor to help me get my IC under control.
    Thanks for listening
    Current diagnosis
    Severe IC, Severe Endometriosis(keeps growing back all over despite surgeries and treatment), Chronic ovarian cysts, Chronic Pelvic Pain Syndrome,Fibromyalgia,Inguinal hernia, bursititis of the hip, Migraines, IBS, Celiac disease, CROHN'S Disease, Chronic Constipation, Chronic anal fissures, Vulvodynia, Pelvic Floor Dysfunction, Pirisformis muscle spasms,vulvar vestibulitis, chronic insomnia, Burning Mouth Syndrome, Brain TUMOR, Chronic Lyme Disease,Temporomandibular Joint Disorder,Degenerative disc disease,Arthritis.
    Allergies: Elmiron, Levaquin, Sulfa-Anaphylactic shock,Morphine, Doxyclycline,Cipro

    Treatments I have tried:Bladder instillations, Oral meds-Elmiron, Elavil (amitryptyline), Hydroxyzine (Vistaril & Atarax), Ditropan, Levsin, Urispas, Urised, Pyridium, Cystoprotek, Desert HarvestAloe,antibiotics,Ultram,Neurontin,Valium,Tramadol,Lunesta,Ketor olac,Cipro,Meloxicam,Dilaudid,Morphine,Vicoden,Darvocet,oxycontin,Lyri ca,Cymbalta,Nortriptyline,Enblex,Baclofen,Clonidine,oxybutynin,Detrol, Nitroglycerine ,Vesicare,Sanctura(there are more but this is enough)
    Physcial Therapy, Cystoscopy with Hydrodistentions, Numerous Nerve Blocks, Neuromodulation-including Sacral neuromodulation(Interstim) and post-tibial nerve stimulation (Urgent PC-12week), Botox, bladder instills, physical therapy, natural(herbs)Current meds: Long list..just email if you are interested
    Interstim implants--8 plus surgeries for them.
    I am selling IC awareness bracelets, keychains, pens and pins..if interested please email me! ThanksFeel free to email me at [email protected].
    One day at a time

  • #2
    Bless your heart! I am so sorry to hear you having been going thru all of that. I know you said you have tried everything your Dr. has suggested, but since coming to the ICN a year ago, I have learned that there are alot of things that many Drs. just dont know about. Your Dr. sounds like he/she means well, but may very well be one of them that is doing his/her best, but just doesnt know about other options. So, my first suggestion would be to get a 2nd opinion from another Dr. and if that one has no suggestions, then get a 3rd opinion. There are always more things to try. The drugs and drug combinations alone are endless.

    It will help all of us (and your future Drs.) alot if you could list the things you have tried. That way, we will be able to tell you about other options.

    I am curious about everything you have tried, (meds, therapies, surgeries, etc.) Specifically, though, I am wondering if you have tried Interstim, Cysto/hydro, the IC Diet, Pelvic Floor therapy, DMSO or Rescue Instills, Elmiron, Detrol LA, Vesicare, Pyridium, B and O suppositories, Cytotec, Cyclosporine A, Urelle, Urimar T, Urogesic Blue, antispasmodics, neuropathic meds, Elavil, other antidepressants, muscle relaxors, pain meds, etc. Please list which things you have tried.

    You mentioned that you have been this way since last month. Were you d/xed last month? Or is that when your symptoms intensified to this level.

    I hope that your Drs. can help you soon. My heart goes out to you. I hope things get better soon and they can find something to help you.



    • #3
      HI and Welcome!
      Gosh I'm SO sorry to hear about all the pain you are going through! IC pain is SO miserable!
      Ihurtoo has some good suggestions....let others know what you have tried and they can give you some great ideas on other treatments that's worked for them at this stage of IC.
      I hope you get relief soon! 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's amazing stuff!!:woohoo:


      • #4
        I'm so sorry you're having a tough time right now.

        A list of the treatments you have tried and failed could help us to make some suggestions that might help.

        Sending gentle hugs,
        Stay safe

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        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.

        Anyone who says something is foolproof hasn't met a determined fool