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We have found the ANSWER!

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  • #16
    That is such wonderful news, now you know what it is so now they can do something for you...Im so glad you finally have an answer....

    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!

    Link to Patient Handbook:

    Diet Reference Sheet:

    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

    Meds I have Tried:
    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
    Lexapro< Bad reaction to this med!
    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

    Dx With IC in Nov 2006 with Hydro/Cysto
    Hydro/Cysto Caused Bladder to Rupture.

    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.

    ICN 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.


    • #17
      Kara, I've been thinknig of you, knowing you had yoru apppointment yesterday, I was praying for you! I'm so glad to see that you've finally got an answer and that there actually ARE other treatments besides the final decompression surgery. I hope this can be the beginning of some relief for you! As always, thanx for sharing....I'll talk to you soon! Love & Hugs, Chris
      Thank You all so much to everyone here for all your sharing, caring and support!
      < My "Bear"
      Started herbal teas 6/2/06 Marshmallow root, comfrey root, and catnip. 6/25/06 added Mullein Leaf Powder to tea.
      IC Diet
      Hydroxyzine 50 or 100mg at night (Is restarted)
      Zoloft 100mg 4/8/07 (Is restarted)
      Klonopin 1/2 mg 4 X Day (started 3/17/07)
      Past Treatments: Amitriptyline, Neurontin, Hytrin, Heparin instills (was Dc'd after 5 weekly tx's due to severe urethritis), Superior hypogastric plexus block, E-stim, Elmiron instills (started 4/18/06-Dc'd 5/30/06 due to severe urethritis/infection requiring foley cath @ home 4 days), Oxycontin (oxycodone) (4/18/06)-pain (Dc'd 5/31/06), Levsin S/L (hyoscyamine) (3/17/06)-antispasmotic (Dc'd 5/31/06), Elmiron (1/24/06)-(Dc'd 6/25/06), Prelief, Zanaflex 4mg for PFD (Dc'd 10/1/06), CystaQ 1 in am & 1 in pm with food(started 5/12/06-increased to 2 in am & 1 in pm 9/20/06---Dc'd 10/18/06), Lyrica (started 10/26/06 up to 600 mg-Dc'd 12/4/06 due to urinary retention), Vicodin (hydrocodone) ES PRN for pain (Dc'd 1/4/07); Cymbalta 30mg (start 1/17/07) up to 60mg in am (1/26/07) (D/c'd 3/17/07); Ativan 1mg(Lorazepam)- PRN Anxiety (changed to Klonopin 1/2mg 4Xday 3/17/07); Pyridium (phenazopyridine) PRN-bladder analgesic; MSM (6/12/06) 1000mg after breakfast & dinner (Dc'd 3/15/07); Acidophilus (Natrol) 100mg. 1 capsule 1/2 hour before breakfast (5/20/06) (Dc'd 3/17/07)

      Added BACK in - Atarax (hydroxyzine) (started 4/6/06 Dc'd 5/31/06) Restart 50mg at night 8/18/06, up to 100mg at night 1/4/07. Zoloft 100mg-Depression (Dc'd 7/25/06) Restart 4/8/07) 100mg.
      Dx'd: Dec 05 (Positive PST in November and positive cystoscopy in Dec) Symptoms: Pain, frequency, urgency & retention

      My Myspace page -


      • #18
        Kara I am so glad to hear this news!!!!!!!
        Isn't it wonderful just to know what is wrong? I think the turmoil of the testing and treatment for all those years has taken such a toll. I know I haven't been through near what you have but went through years of treatments for the WRONG diagnosis too. I was soooooo elated just to have a name for my problems!

        You are such an inspiration to so many of us here. Your strength and generous love has helped me so many times.

        Take care and know that we love you!!!
        IC symptoms began in 1975; diagnosed in March 2006.
        Other conditions: PFD, Migraine, VV, Total Abd Hysterectormy on 12/27,06 for Cervical Cancer, Fibromyalgia.
        Current Daily Meds: Roxicet, Methadone, Flexoril, Flomax
        I use Prayer, Yoga, Relaxation Breathing and TENS to help relieve stress, anxiety and pain- LOTS of make up to hide my true identity!



        • #19
          Thank You All!

          Thank You All for you kind words, love, and support! It means so much to me. I could not wait to give you some good news for a change. I wrote everything down while I was there so I would not forget anything. As Lori mentioned with writing the date down, I will never forget it. It's been a very long road. I still have a long way to go but I feel a bit stronger now that I have some answers.

          I am having a bit of trouble with the Oxycontin. It's a 12 hour, extended release. Two times a day. It mixed funny with my Ambien and I was sick all night and could not sleep at all. I am hoping that with time that will pass. I am thinking about calling my doctor and asking if I can take it once a day in the morning so it has worn off by bedtime. The Ambien has been my saving grace these past few months so I don't want anything messing with it.

          The doctor that does my nerve blocks is a wonderful man so I am excited that he will continue taking care of me. I wish all of my doctors were like him. He's actually the one who thought it was PNE but the pelvic pain doctor had to give the final diagnosis yesterday. The pelvic pain doctor is really hard to talk to but he is really smart, so I have to take the good things away from him and carry on.

          I will finally meet the doctor that I've been emailing back and fourth with March 13th. He's about 9 hours from me. Allen will be taking me up there.

          There will be a lot of traveling. My car will get a lot of use over the next several months. Thanks for taking the ride with me! I couldn't do it without the wonderful support you all have given me.

          Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

          "One hour at a time, this was NOT my American Dream but it has to work out somehow."

          I also have some journals of my journeys, past and some present at:

          Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.