No announcement yet.

New, scared and hurting

  • Time
  • Show
Clear All
new posts

  • New, scared and hurting

    I went to my regular doctor yesterday with just the nastiest pain in my bladder. I've had some twinges before over the years, like pain when I have to urinate, etc., but I thought it was just a bladder infection so I did all the usual things, lots of Vit. C, Cranberry juice but this time it has lasted for over a week, it's all the time and it hurt even more! My doctor was a med assistant in a urologist's office for several years before she became a MD. She said it's classic IC. I have an appointment with a urologist on Tuesday. She said to take ibuprophen (sp?) for the pain until then. It helps take the edge off a little. Until then, I'm just hanging in there. This is really scary but I don't know why. It makes me feel really anxious, jittery. Anyway, I'm glad I found this site. After reading some of the posts I can see why it got worse. Boy, I did everything wrong.

    I guess, after that long oration, I'm wondering just what to expect from the visit on Tuesday. I'm a bit scared.

    Thanks for being here

  • #2
    HI Sweetpea!
    Sorry to hear you may have IC. Sounds like you did do lots of things that probably made your pain worse. Cranberry juice is Really is Ibuprofen....OUCH!!
    Have you started the IC diet? It'll help you a lot to find your trigger foods and to help avoid things that'll make you flare.
    On your first URO visit he'll examine you and probably set you up for some tests at the hospital to get a diagnosis. Hopefully he'll get you started on some IC meds....probably Elmiron and maybe Elavil or one of the other IC meds. You can ask for pain meds if you are still in pain.
    I hope you get it all figured out soon. This is a great place to learn about IC and talk to some great people who really care. Good luck!! 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
      First let me say !! It is a bit scary to be DX with a disease that really they don't know much about and there is no cure.

      Let me say this...there are alot of women on here that are wonderful and have so much information and heart to share with you.

      I know it is going to be hard, but try your best to not be scared. When I had my 1st URO appt I was scared also. He did a plevic on me and that flipped me out. I truly did not think that was going to happen, but it did and it gave him a better idea of where my pain was.

      For your pain...get your heating pad out if you have one. That might help you for now. I have also heard that baking soda helps.

      I wish you the best and I hope that all works out for you. Good luck and I hope to see more posts....well I do but then again I don't!!! lol

      If you have insurance you may want to check into seeing a pain doc!! Alot of us see one just because they can help you get a handle on your pain a little bit better than a GP doc u know.

      These are just some ideas for you and I am in no way a doctor or RN ok.
      Live your life to YOUR best, and Love to YOUR best!!!

      DX in 03 with Shingles
      Removal of Left ovary due to Cyst in 2005,
      I have had cyst since I started my period as a child age 12
      Hysterecotmy December 06
      IC DX March 07 by PST
      2 "rescue" instills in March 07
      Cyco May 07 confirmed IC
      Uro study June 07
      1st Pain Block July 17,08
      Hydro/Cysto Nov 11, 2008
      12-11-08 was told I had alot of inflamation

      Meds: Allergic to 6 things
      Premarin......taking the gen cause I get it at Walmart for 4$$
      Presique for my drepression :woohoo:
      Abilify for my depression
      Adderall ...found out I'm ADD...makes sense now
      Kolopin for anxiety
      Noroco for my pain
      Valtrex for my shingles as needed

      Sorry if my spelling is off on the meds [/FONT]


      • #4
        HI Sweetpea,
        Just wanted to welcome you to the ICN

        Hopefully the appointment with the urologist will be helpful & bring you some relief.

        In the meantime, check out the diet in the Patient Handbook ("Understanding Diet & IC") linked at the top of the page. It can take several weeks on the diet to reduce the inflammation enough to know if it will reduce your symptoms. But, it is totally worth it. I think I read that 86% of IC patients find modifying their diet helpful in controlling their IC.

        I also recommend becoming familiar with the Patient Handbook. It's a wonderful reference tool as you check out treatment options & self-help strategies.

        Sending a hug, hang in there, it gets better as you find what works for you!

        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!


        • #5
          You might want to telephone your uro's office and ask what is scheduled. Usually they will have you fill out a questionnaire, talk with you, and schedule some testing. You'll feel far less anxious about it if you call and find out for sure.

          Stay safe

          Elmiron Eye Disease Information Center -
          Elmiron Eye Disease Fact Sheet (Downloadable) -

          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:


          Diet list:

          AUA Guidelines:

          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


          • #6

            Donna has a great idea there, just call and ask what to expect. Then you don't have to imagine what might happen!

            For self-help, for now, I agree that heat is a great help (but some people prefer ice). The baking soda trick is, drink 1/2 tsp of baking soda in a glass of water. Tastes foul, but it can greatly reduce the acidity in your urine, which in turn reduces irritation in your bladder. The only other things you can do before you see the doctor, I think, are to educate yourself as much as possible about IC (check out the Patient Handbook, link is at the top of this page), and to try to relax as much as you can. I know that's hard to do when you're hurting, but if you can lie down with a heating pad and maybe some soft music, and just try to breather deeply for a while, this can help a lot.

            Please let us know what happens at your doctor's appt., okay? Take care of yourself.
            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


            • #7
              Thank you all so very much. To tell you the truth, this has been just one more health thing that I just didn't need. I am finding some relief in my heating pad, although I never thought I could love it anymore than I already did! My husband is being fabulous about this latest bit of a trial, but he has hung in there through thick and thin with me so that is a comfort. He subs as the hp at night, what a trooper.

              The dr's office said that they would run a few tests to be sure that it is IC and depending on that, we would go the next step. The ibuprophen seems to really help me get through the day. It takes the edge off which is so strange since it has never worked for me with any other pain. Is it really that bad to use for a few days till I see the dr?

              I will check out all of the links you all mentioned. I am not feeling hopeless. I have great faith that this is part of God's plan for me and I will work with it. You all are such an inspiration. Thank you again for answering my rather frantic plea last night. I'll keep you posted.


              • #8
                Hi Sweetpea and welcome to our group. The ibuprofen thing, some are alright w/it some are not, thats going to depend on your bladder. I can handle Tylenol but not ibuprofen (and thats all I used to use when I'd have a headache or anything so it was a big change). The heating pad is my best friend too lol and the idea of baking soda in water, it makes for an alkaline environment for the bladder. I use 1/4 tsp baking soda in the COLDEST water possible, tastes awful but easier w/the cold water.
                Glad you found us. Hang in there, you have a lot of support. Dont hesitate to ask questions, someone here may have a suggestion.