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  • New with questions

    Hi,
    I just was diagnosed with IC. I am scared, and I dont even really know what to expect. Will this ever go away? My doctor put me on elmiron 3x a day, for who knows how long. Will I ever be able to have a baby? This literally happened over night last october. I woke up one morning, and I have been burning and itching ever since, but had felt fine other than that. Any help is appreciated. Has anyone else ever had this come one so fast? Or was it a gradual process for you. I am still wondering how in the heck that I got this??
    I have only been married for a little under 2 years, and I was married for over a 1 1/2 after my symptoms started?? weird
    Thanks
    Christi

  • #2
    Christi~ We all here know and understand your fear. I was diagnosed in January of this year and I too was afraid, and have been on a rollercoaster ride in and out of flares, but this website is a great place for you to be. Aside from a good Uro or Gyno, get the IC Handbook on this website...it will teach you so much and assure you that you too will find the right combo of medications and diet. First thing is you need to de-acidify your urine. Drink water (Evian or Arrowhead are the two that I drink and both have high PH--that is a must in any water you drink). Also, what has helped me is taking Prelief at every meal (also in the IC store if you cannot find it in your pharmacy). I hear Tums or Rolaids do the same thing. They will take the acid out of the food you consume. Talk to your Uro about all the concerns you have (having a baby). I'm sure he or she will assure you that once your IC is under control (and it will be) you will be able to live quite normally as long as you follow the protocol your Dr sets you up with. I am doing quite well now (unlike how I was when first diagnosed which was completely beyond any pain I ever experienced). I follow the IC diet religiously and am taking the combo of meds that have truly stabilizd me. Hang in there... remember, learn all you can...knowledge is truly empowering and the IC Handbook is an excellent place to start.
    Peace
    Danica


    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
    MSM

    ~God's mercy and grace are infinite~

    Comment


    • #3
      to the IC Network. Danica has given you some good advice. If you are in a highly clorinated water area, you will probably want to drink bottled water for a while to see if it helps. We have a well so no chemicals added and I can drink tap water at home. I usually buy Costco's brand of spring water --- I do read labels to be sure it's plain water with no additives.

      And you'll want to put yourself on an IC diet. You'll find it in the Patient Handbook at http://www.ic-network.com/handbook Some ICers find that single step helps more than any other.

      There are at least several who post here regularly who go through pregnancy and have healthy babies in spite of having IC. Somewhat like non-icers who are pregnant, some have an easy time, others are miserable for months. My children were born before I developed IC and I had two easy pregnancies; the other I felt nauseated and just plain yucky for at least six months. At least that one was the easiest delivery!

      As Danica said, most ICers do find effective treatments. And most of us feel good most of the time. It may take you a while to get there, but don't lose hope --- you'll make it.

      Sending warm healing thoughts,
      Donna
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

      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: http://www.ic-network.com/patientlinks.html

      Sub-types https://www.ic-network.com/five-pote...markably-well/

      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

      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.
      [3MG]

      Anyone who says something is foolproof hasn't met a determined fool

      Comment


      • #4
        Donna~ I have a question for you...I came down with my very first bad cold since diagnosed with IC and have all the normal symptoms--body aches, fever, congestion, headache, and a really nasty cough that gets worse when I lie down. Do you have any suggestions for me? I'm afraid to taking anything that is known to bring on a flare. Thanks so much:-)
        Peace
        Danica


        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
        MSM

        ~God's mercy and grace are infinite~

        Comment


        • #5


          I think we all are scared in the beginnig, but I think thats because we dont know much about this disease to begin with.. I found that the more I know the more I am not affraid of it..Will it ever go away? Well im sorry to say there is no cure for IC. Hopefully one day there will be a cure...
          I have found that the IC diet really helps...And you should check out the ICN handbook it has alot of info in it..
          And keep asking questions!!!!!
          Hugs
          Ronda

          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:
          http://www.ic-network.com/handbook/

          Diet Reference Sheet:
          http://www.ic-network.com/diet/icndi...tsheet0909.pdf

          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.

          Comment


          • #6
            "Will it ever go away?" was my first post to these boards almost three years ago. I was scared too. The answers I received told me no, it won't, but things usually get better, and that's exactly how it turned out for me. I am so much better now than when diagnosed thanks to a combination of meds, diet and a few self-help tricks! Odds are, you'll find the same!

            My symptoms also came on suddenly. I've asked what I ever did to deserve this?, did I cause this?, and my favorite,...why me? Lots of theories out there but it seems no-one knows for sure yet. Seems all we can do is deal with IC the best we can until someone figures it out and comes up with a cure! This site is a great place to learn how to live with IC! The handbook is a perfect place to start.

            As far as children, I was pregnant three times and for some reason I was completely sypmtom free through each pregnancy. Not everyone has that experience, but I do believe I've heard many others say they did as well. Hormones? I don't know. It sure was a nice break though!

            Vicki
            "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

            Comment


            • #7
              Christi,

              Sorry to hear about your diagnosis of IC. It seems that you have gotten great advice so far! The IC diet is usually the most important step and can really alleviate some of your symptoms. Finding a great uro that is well-educated in IC is another important thing. And, know that you will always have support and comfort here on the boards.

              ~Claudia

              "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


              Comment


              • #8
                Hi sweetz0625,
                This is about the best place to get info I've found so far. We've all had that freaking-out phase, and most of us still go through it. I did some of my own flipping out a couple of nights ago. While it won't go away, the good news seems to be that for most people it won't get worse. I've read several things that say for many women, their symptoms actually go away when they get pregnant...the hard part is getting there seeing as this tends to make the horizontal boogie not so fun much of the time.
                If you're in a quick fix and can stomach the taste, a quarter teaspoon or so of baking soda in a pint of water can be helpful. It saved me from a flare yesterday, as a matter of fact. Prelief is expensive so I use Tums more often, but my case is pretty mild compared to a lot of other folks. Chances are, as you work through the diet (and oh, how I hate this diet!) you'll find what's good and what's not, and you might be surprised at what you will be able to have. It'll just take patience and time, two things we all can be short on.

                Comment


                • #9
                  I too was fine one day and the very next date I thought I had a Bladder Infection. I called my Doctor and he gave me a precription for an anitbiotic. I took all of the medicine like I was supposed to, but the pain did not go away. He referred me to a Urologists who did a Cystoscopy and took a Urine Sample. He told me my bladder looked red and irritated and put me on Detrol LA, which did nothing for me. I didn't really care for the doctor and later was referred to another one. The last doctor ran all kinds of tests and diagnosed me with mild IC. I would hate to know what it feels like it was not mild. He did not put me on any medication at all. On my own I found out about Prelief and I also take AZO which seems to help.

                  Has anyone heard of taking Glucosamine with MSM? Are there any side effects and can you take them if you have an occasional drink?

                  Comment


                  • #10
                    IC is a lifelong disease that does not have a cure or even "one effect for all treatment". I was diagnosed with rapid onset of IC. It started after extensive pelvic reconstruction.

                    I have a urogynocologist. He specializes in IC. I am not sensitive to foods so I don't have to watch what I eat. My treatments are effective and my urogyn feels that my IC will not progress as it was diagnosed early and the treatment was effective. IC is really only a slight aggravation for me, in that I have to mix the compund for the instillation rather than jsut take a pill.

                    My knee causes me much much more problem.

                    I am really very comfortable and feel extremely positive about the future.
                    TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
                    My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

                    Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
                    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
                    Louann

                    Comment


                    • #11
                      well I just started today on elmiron and so we will see how it works I have mild ic, and so hopefully I wont be in anymore pain soon

                      Comment


                      • #12
                        p.s. I dont know how many other women are like this. But I really only burn when I go to the bathroom and for a little bit afterwards. I usually sit in a bath until it goes away. But I also start itching externally. And this is what started last october, the burning and itching. I think that I might have had an uti because under the microscope the doctor said thats what it looked like but I guess I will never know. But do any of you ladies only burn or itch when you go to the bathroom and a little bit afterwards???? Thanks

                        Comment


                        • #13
                          Oh Im sorry for posting so much. But I also thought that I might add that when my doctor did that potassium test. The potassium started burning around miute 3- 3 1/2, and so I guess I am a mild case. Since he said that a lot of women start burning right away. But that makes me wonder hhmmm. Oh well I will take this medicine and see if it goes away

                          Comment


                          • #14
                            I'd suggest a second and/or third opinion of your diagnosis. Your symptoms could be due to Vulvodynia rather than IC. The Potassium Sensitivity Test (PST) is not always accurate; I have a fact sheet on PST - if you're interested in reading it, you can email me privately through this website or at [email protected].

                            You can find excellent information on Vulvodynia at www.nva.org. The burning could be a build up of potassium in your bladder, especially if you don't drink enough water throughout the day. I suggest a sip of water every 10 minutes or so during the day. The vulvar itching can be part of vulvodynia. Elmiron will not help if you have vulvodynia. However, some of the same medications that help IC patients, also help Vulvodynia patients; such as, Vistaril, Topamax, Elavil, Cymbalta, Neurontin, etc.

                            I suggest that you consult with your healthcare provider if you believe that the information above may be helpful; your healthcare provider will determine the appropriate treatment regimen for you.

                            Only your healthcare provider can determine if the above suggestions are appropriate treatment options for you; these are just some suggestions that you can discuss with him/her.

                            The contents in this post are provided for informational purposes only. The contents are not intended in any way to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your medical condition.

                            Best wishes, ICB

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