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Having my first WORST flare!!

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  • Having my first WORST flare!!

    First let me say how helpful reading a lot on this website has been!!! I am new to this, I was diagnosed last May after dealing with chronic pelvic pain for @ 2years. My pain first started about 7 days after I had a LEEP procedure at my gynos. They were sure i had some infection, blood in urine, but it all came back negative! Then they thought it was my appendix as most of my pain started in my lower right abdomen - but again negative! SO home I go and more tests and doctors! And at times you do begin to wonder if you are "crazy"!! I had my first lap in october of 04 - funny enough they found some odd tissue in my abdominal wall right where the pain was. I felt ok for about 1 month and with my periods, the pain was right back to where it started. My gyno had no clue, and unfortunately made me feel like it was "all in my head". She told me to get my stress in line etc and prescribed some antideppressants!! when that didn't help, which overall I am a very happy person, and I really do not think I was overly depressed at that point. I was more frustrated!!! SO on to a pelvic pain specialist finally after waiting 4 months my appointment was here!! he thought for sure I had endo - so another surgery was performed.... again he found nothing. from there he thought it was all trigger points, so I went to PT for almost 9 months, when I finally had enough. It def helped and I learned a lot about stretching and heat etc... but I felt like it got better and then I hit a wall and when it wasn't as helpful I started doing it myself at home. Finally 4 more months after that after reviewng all my questionares my doctor asked if I really went to the bathroom 4-5 times a night.I said yes, b/c I always have gotten up a lot at night it never seemed odd to me. He said your a bit young (29 at the time) to be up so often. b/c my pain was always at such high levels he did a reverse test with an instillation to see if that relieved anything.... and sure enough it did! I have been on Norco for almost 2 years now, and I do my installaions 2x week faithully, and for the last 6 months or so things had been in control! I considered myself very lucky not to have experienced the urgency and frequency issues that so many suffer with...... I could deal with being up all night LOL!! anyways that was until 2 weeks ago, when 2 days before my period started I was up all night in pain, and the flare has progressed from there. I have been going to the bathroom almost once an hour, or feeling like it, but when I can't go I end up crying and even more frustrated and discouraged!! And the pain is as bad as it was when I started, maybe even worse!! I also use heat alomst all day long if I have to - thermacare can be a godsend!! I also ahve a tens unit that works great for long trips in a car or plane, anywhere I have to sit for a long time. anyways .... My flare up in pain was bad, but I didn't want to call the doctor, so I waited. then the frequency started and the urgency, so I was off of work for 2 days and waiting by the phone for the dr.s office to call. The nurse there is really wonderful - normally calls back within 45 minutes if not sooner. Maybe b/c I don't call that often, but I was impressed!! She mentioned possible changing my pain meds, but then had me go for a pee test to see if there was any infection. Negative again!! SO I am into this flare now almost 2 weeks and no relief! The doc is back in the office on friday and she said to call if i am not feeling better......
    SO my most important questions are:
    1 - Can IC be progressive where it gets worse?
    2- has anyone ever had issues with vomiting during flares?
    3- And is there anyone who doesn't have issues with foods and flare-ups? I have done elimination diets, and other than alcohol, I don't find that anything else worsens the symptoms?
    4- Can you build up a tolerance to your pain medication, to the point that it is not helping ay more?
    I would greatly appreciate any input from you. Sorry this is so long, I guess I felt the need to vent!!

  • #2
    Amy I just wanted to say
    I do not have the answesr you are looking for, but I am sure someone on here will...

    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
      Amy~ I am new to IC as well...but I am currently after a hellish two month flare in a beautiful remission for almost two weeks. What I did that I think really helped me is first of all lots of HIGH PH water like Evian and Arrowhead Spring Water. I take two Preliefs with EVERY meal as well. I added to the Elavil an Antihistamine that my Dr perscribed and I am thankfully and blissfully in remission. I take one day at a time and not think about tomorrow. Listed below is the regimine I am trying and so far it seems to be the combination that works for me. Don't give up! Work with your DR. to find the right combo that will work for you. But remember it is really important that the water your'e drinking is low in chlorine and HIGH in PH. Let us know how you do and I hope you get well soon. do have the IC Handbook off this website right?? It is so helpful to have that. Take care.
      Last edited by Danica; 03-01-2007, 03:43 AM.

      Stopped taking Elmiron for the time being-- could not tolerate side effects

      ADARAX 25mg at night and at times morning
      Calcium mag citrate w/ vit.D
      Prelief 8 to 10 a day
      Cystoprotek 4 a day

      ~God's mercy and grace are infinite~


      • #4

        I believe the general consensus is that IC doesn't really progress and continue to get worse. I'm sure it could happen, but I think generally it is what it is and each individual is different.

        As for vomiting with flares, again I think this would be an individual thing. It could be caused by the pain that you are feeling or even the meds you might be taking.

        I think most people have some trigger foods, but the majority do not suffer consequences from ALL the foods on the "no" list. If you have strictly done the diet for a few weeks and then added back one thing at a time, then it could very well be that you only have that one main trigger.

        Yes, you can build a tolerance to some pain meds...that's why some people "accidentally" overdose...because they are just trying to get relief but are having to take more meds than prescribed, which of course is a huge no-no. If you have concerns about the meds you are taking, talk to your doctor and together try to find the right combination of meds that relieves your symptoms the most. And, if you require pain meds on a very long term basis, I know some people do "rotate through" meds sometimes to avoid building a tolerance to one.

        Definitely check out the Patient Handbook here on the has an incredible amount of information that you may find useful.


        "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


        • #5
          IC only progresses in a very small percentage of IC patients. Most of us do have occasional flares, however. You might want to try a low-dose antidepressant --- they can help with pain by interfering with the nerve receptors. And I would give the diet another try. You'll find the diet in the Patient Handbook.

          I hope you feel better very soon.

          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
            Hi Amy,

            I'm new too! I don't vomit, but I have really bad nausea and acid reflux.
            Hope you have a pain-free day! Ronni B.

            Favorite Quote: " I only allow five minutes a day to feel sorry for myself."
            My Mom who died from Pancreatic Cancer.

            Diagnosed with:
            Interstitial Cystitsis
            Heart Condition S.S.S , Pacemaker put in Feb. 2008
            Slipped disc in L4

            Fentylnol Patch
            Lortabs 10mg
            Florinef for blood pressure