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newly diagnosed

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  • newly diagnosed

    I am 35 and been suffering for quiet a while, thought it was prolase but found out at the first of Feb 2007 that it was IC. I am very scared and wondering if anyone could give me some advice on how to cope with the pain?

  • #2
    Welcome to the forum bamafan! Sorry to hear about the recent diagnosis, but just trust that all will be well.


    • #3
      HI! Welcome! This is a great place to find answers to questions, advice or just to vent.
      Seems we all here have or have had lots of pain with IC. It's sure not a fun thing to have! What has your dr. recommended so far? Have you had the tests already? Azo is a great bladder pain medication that is over the counter.......have you tried that yet? 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
        Are you following the IC diet? It really does help w/ the pain and urgency/frequency. Also, heating pads on the abdomen are nice, and if I'm really bad I take a hot bath and just soak. Try not to push yourself too much, I find that makes my flares much worse. Take time to yourself, especially if you're feeling bad, don't feel bad about taking it easy, its the best relief. Hope you feel better!!!


        • #5
          There is a lot of good tips in the IC handbook..And meme is right the diet has helped me alot...Well I wanted to welcome you and if you need anything just ask

          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.


          • #6
            Thank you all for replying to m questions. I am new at this and am trying to get started on the diet but I am confused and not sure what to do. The doctor put me on Elimron and I had a reaction to it so I have to wait one more week before starting it back. I have had one RIMSO treatment with many more to go.


            • #7
              First of all,

              You've come to the best place in the world to get information and support, and just to vent when you need to. This is a community filled with beautiful souls who all have two things in common: We care about each other, and we have IC.

              I know it's a scary diagnosis, but don't get too worried. There are a lot of excellent treatment options. Sometimes it takes time for doctor and patient to come up with the right combination and balance of treatments. Many, many patients go into remissions that can last for years. Most of those people stop posting on the boards, so the one downside of this forum is you get a somewhat skewed view; most of us here are still struggling, but that isn't a real-world snapshot of people with IC. Just keep that in mind, ok?

              The IC diet is not all that complicated: Just print out the list of foods from the IC Handbook on this site, and post it on your fridge. You'll probably want to avoid eating out for a little while, so you can be sure what you're consuming. I say it isn't complicated, but it is hard -- there's a lot you have to give up, at least at first. I, like everyone else, urge you to stick to it as strictly as you can. It can make a huge difference. And any time it's driving you nuts, just post and we'll try to help and encourage you. Also, drink a lot of water. You probably don't want to go to the bathroom any more than you already are, but drinking water does two good things: It dilutes your urine so it's less acidic and less irritating to the bladder; and it fills your bladder which actually makes it easier to void. For most people, anyway.

              It's a good idea to get yourself to a pain management clinic or practice. I can't get by, with my pain level, without narcotics, and a lot of urologists are reluctant to prescribe them. It's not necessarily that they are against them, but as my uro-gyn explained to me, it's not their area of expertise, and they don't feel comfortable figuring out dosage adjustments and suggesting combinations. As my dr. said, "I just don't know enough to feel that it's safe for me or my patients for me to do the pain management." There are also alternatives to narcotics; but pain management is a very important aspect of treatment. Pain is a stressor on the body, and IC symptoms tend to get worse when we're stressed. Plus, who really wants to be in more pain than they have to?

              I urge you to spend a lot of time on this site, esp. the Patient Handbook, because the more you know about your condition, the better you will be able to handle it.

              Never hesitate to poste a question, no matter how dumb you think it sounds! That's one of the things we're here for, to exchange information. And if there's anything you feel shy about posting publicly, you are very welcome to PM me. Nothing embaresses me anymore!

              I wish you all the best on this journey that you have just begun.
              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


              • #8

                I ditto what Carolyn said. Never hesitate to ask any questions you may have here. The great thing is that some of the IC'ers are also nurses, so sometimes they can bring a more clinical view to things and explain things a little better.
                Diet is key! It's really not fun, but you will probably feel much better once you get that going.
                Good luck and I look forward to seeing you around!!


                "A heart is not judged by how much you love; but by how much you are loved by others."
                ~ The Wizard of Oz

                "If I ever go looking for my heart's desire again, I won't look any further than my own
                back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy


                • #9

                  Glad you are here. This is a wonderful place. If you have quesitons, I'm sure someone can help you. Keep posting.
                  TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
                  My Helpful Hints for Home Instillation:

                  Institute of Female Pelvic Medicine (J. Dell, My MD)
                  Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
                  I post to encourage and offer total support for rescue instillations.
                  Find me on facebook: L. Clark Thomas