No announcement yet.

Hello everyone!

  • Filter
  • Time
  • Show
Clear All
new posts

  • Hello everyone!

    Well, I guess Im kinda new to all this and I really dont know where to start, but I have had lots of stuff going on for the past six months, had cat scans, mri's, ultrasounds, tests up my ying yang and finally my OBGYN told me I have IC - so guys where so I start with this, she has given medication (Elmiron) which I dont like the sound of as the side effects can be horrible, a sheet with foods on to avoid which probably leaves me with bread and water!! and lots of unanswered questions, Im scared, can you help me out? what can I expect?

    By the way, my name is Jan and normally Im not a worry wart but but this thrown a curve ball at me and I dont know what to do.

    Any help would be appreciated.

  • #2
    Hello Jan and ..
    At the beginning of my dg with IC was the worst time for me.. I was scared, confused and didnt know where to turn. I was so glad I found this site.. There are so many wonderful pointers and tips here and everyone is very nice and helpful..As far as Elmiron I am not on it. I am trying a few other meds first.. But some people on here have had great success with Elmiron, maybe they will chime in and give you some advice.. Well again welcome and if you ever need anything just let me know


    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.


    • #3
      I'm glad you found us!
      Being told you have interstitial cystitis can be a pretty huge thing to deal with. But, once you learn more about it, you will begin to feel a little less panic. The Patient Handbook is a good place to start. You'll find it at --- there's information there about the IC diet, which includes a list of foods that are usually okay. The diet isn't as bad as it appears at first. And it's worth the effort.

      Yes, some people do have side effects from elmiron; I am one who had a headache from it and had to stop taking it --- but some ICers find it is a huge help --- hopefully you will hear from some of them. And yes, there is the potential for other side effects, just as there is with every medication, including the common aspirin and tylenol. The good thing is that if you DO have side effects, they almost always go away promptly as soon as the medication is stopped.

      Another thing to remember is that there can also be side effects from the so-called "natural" remedies --- they are medications too.

      It may take a while for you to find which treatment options work best for you and which foods and drinks you need to avoid, but most of us do get there --- and most of us feel good most of the time.

      Sending welcoming hugs,
      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


      • #4
        Hi Jan,
        I started having symptoms in Jan 07 and was diagnosed in March 07. I was also very scared. You are not alone... we are standing with you. You will find a lot of good information and wonderful support on there boards. Just wanted you to know that I am sorry that you are not feeling well and hoping that you will be feeling better soon. Sending healing energy...linda
        Sudden onset of UTI like symtoms on Dec 27, 2006.
        Diagnosed with IC on March 12, 2007.
        Current Meds: 50mg Elavil
        "Be kinder than necessary, for everyone you meet is fighting some kind of battle" author unknown


        • #5
          Jan! So glad you found us!

          I am one who has been helped greatly by Elmiron. If you decide to try it - let us know. I haven't had any side effects and have been on it for nearly 6 years now. It's been a lifesaver for me.

          Diagnosed August 2001

          Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

          Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

          I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.


          “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

          “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy


          • #6
            Hi ,

            I know it is horrible to hear that you have interstital cystitis, but the good thing is you know what it is and now you can get treatments for it. Sometimes it is trial and error to find what will work for you but for the most of part you do usually find something that will help you get some relief. I hope your medicine will do just that.

            Sending hugs, Trishann


            • #7
              Hi Jan,
              I'd definitely give the Elmiron a try. It doesn't help everyone, but many who have been helped by it feel much better & have very normal lives. It didn't work out for me, but I'm glad I tried it because compared with other medicines for IC the side effect profile isn't so bad & because it's FDA approved for IC you usually don't have an insurance company fight over it.

              If you're worried about the hair loss the pamphlets mention, it's a rare side effect, most people don't have it & it's usually not a big deal for those who do. (It's not like what we picture when we think of chemo for example). You might pay a little attention to how much hair you lose in your hairbrush now & then after you take the medicine you have a comparison...

              The diet is a drag sometimes, but I've found that by modifying my diet it gives the medicine a chance to work.

              Hang in there, once you get your diet figured out & your treatment plan set up, life gets a lot easier---

              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!


              • #8
                Hi jan and welcome!

                Your first job is to get GOOD information on IC. Our handbook... but, even more importantly, consider buying the IC Survival Guide by Robert Moldwin... which covers the treatments for IC. For example, Elmiron is basically a passive coating that sits on the surface of the bladder like a bandaid. The problem is that underneath the coating is a lot of irritated, inflamed tissue. This is why many patients are given an anthistamine (hydroxyzine) and/or an antidepressant (Elavil) to fight histamine induced inflammation AND neuroinflammation. The book is available in our shop for $13.99

                The second and immediate thing you need to do is modify your diet to remove the top five forbidden foods.

                The third thing.... don't do this alone. This is a great support group and most patients stabilize very quickly and then slowly improve. It takes dedication and patience... but you can do it!

                Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality.

                Looking for books, magazines & reports on IC? Please visit the ICN Shop at: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

                Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.