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I'm just beyond frustrated

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  • I'm just beyond frustrated

    Well, I wake up and it's a beautiful day here in New England. but sure enough, I feel the urgency/pain/pressure/ache thing relentless untl i relieve my small dose of urine.
    The pain comes and goes.
    since starting hydroxyzine 9 days ago, I went from about 5 bathroom trips a night down to 2, sometimes even 1. That's wonderful, but...
    I'm going to up my Neurontin (gabapentin) today to 300mg as my uro originally suggested. I am usually so anti-med, so I suggested 100mg at first, but I don't think that's cutting it.
    I've wrote before, and said my pain is tolerable, and that I live a highly functioning life. but since this Easter flare, I'm feeling really down, and this is supposed to be one of the BEST times of my life!
    You see, I'm getting married in October. I have the most amazing guy ever, but here I am, not able to do so many things. I've been using my weekends to rest, but there's so much i want to do. I feel so beaten down right now; I'm grateful for what the 25mg of hydrox is doing, but when will the urgency/filling with small amount of urine ache/pressure/pain go away? If 10 is the worse, I don't usually go beyond 5. but it still STINKS!
    My goal is to get this thing under control by my wedding, and have a great honeymoon. I also ahve vulbar vestibulitis, which has GREATLY improved with physical therapy, clobetasol (2x weekly), and T cream for my severe androgen insufficency. T has made a huge and positive impact on my life.
    I guess I just need to vent. life is so great, but for this. as I said, it's beautiful here, and i'm seconds away from breaking down from the sheer frustration of it all. I am praying that the gabapentin eventually takes effect. I have also been sticking fairly close to the diet, and I am on day 3 of my menses. Sigh.
    I just want to be okay, be able to be intimate with my fiance ( is that okay to say here?), and just be good. I had been doing so well...
    Thanks all, for letting me vent.

  • #2
    HI, Gosh I feel for you! I have pretty good days most of the time.......but you never know.
    Hopefully the increase in meds, resting and sticking to the diet will help you soon. I know how frustrating it can be....esp. the initimacy part.
    Sounds like you are marrying a wonderful guy who will be supportive of you and the IC monster.
    This is a great place to vent......and you can always PM me or any of the other great ladies on here......believe me we've all been thru it! Take care sweety....good luck to you! (((HUGS))) 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:


    • #3
      Thanks, Roxie. It's so great to have support from others who understand this. My fiance is so supportive, but it's only here on this site that I have truly met people that know what I'm/we're going through. Thank you for your encouraging words.
      I'm keeping my fingers crossed about neurontin. I feel a little flighty, but otherwise just like myself. i haven't gone to the bathroom in about 2 hours...
      We'll see.


      • #4
        Hi Cosette,

        I also have horrible urgency/frequency - AWFUL! My uro has me on detrol la twice a day as well at 50mg of the Atarax at night along with other meds. It helps with the feeling of having to go every second. I am also taking a med for spasms called Loprax......

        Keep working with your doctor to find medicines that will help you feel more comfortable. Share your feelings with your guy - and if you can try to do mild exercise/relaxation techniques.

        IC sucks - but these message boards are helpful as hell! Good luck with everything - planning a wedding is STRESSFUL!

        IC diagnosis 1999
        Meds: Elmiron
        hydroxyzine hcl
        DMSO as needed
        valium as needed
        librax 3x day

        TENS therapy

        Thanks to all on the boards - YOU have helped more than I can say!

        A person's true wealth is the good he or she does in the world.


        • #5

          i find tampons increase my symptoms..if your using might want to reconsider
          Quit ELMIRON due to hair loss
          Cystoprotek ROCKS!

          find me on FACEBOOK -
          search my email [email protected]

          Current Meds:
          AM Cystoprotek & ATARAX 50mg
          Dinner CYSTOPROTEK
          PM Elavil 25mg