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I Was So Sure It Was IC

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  • #1

    I Was So Sure It Was IC

    I was diagnosed with eosinophilic cystitis yesterday. I was so sure that it was IC. My main complaints are very painful urination and severe blood in my urine. These symptoms are very common with eosinophilic cystitis. I had a cystoscopy and a deep bladder biopsy on 03/22/07. The cystoscopy showed a severely inflammed bladder. When the Doctor got my pathology report it said I had extremely high levels of eosinophil cells. This makes no sense to me because I was abused as a child and I thought that was the cause of all my symptoms. I just thought I would share my news and I hope I can still come here for support. Everyone is so wonderful here.
    prettyeyes
    prettyeyes
    ICN Member
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    Last edited by prettyeyes; 03-29-2007, 12:56 PM.
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  • #2
    Hi,

    Isn't there a section for EC here as well? I'm sure no one would want you to leave hon.

    HUGS,
    Moonheart
    http://www.TheCraftyEwe.etsy.com

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    • #3
      What is the difference in terms of treatments with Eosinophilic cystitis and IC? Are the treatments the same? I had some eosinophilis found on my upper endoscopy once. I think they only consider it a problem if there are many numbers of them found. The ones in the esophagus may be different than the ones in the bladder though, I am not sure.
      Jen

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      • #4
        Welcome! EC...IC...makes no difference to us. You still have bladder pain and we can offer support!
        mom_in_ma

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        • #5
          Thanks for the replies. I am not sure if there is a section here for EC. I will check around. The treatments for EC are steroids and antihistimines. I know alot of IC'ers take antihistimines.

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          • #6
            The EC forum is the very last one at the bottom of the page, so you might have missed seeing it. But you will always be welcome to post in all the forums; we all suffer from similar problems and can continue helping each other out!

            I am happy to hear that you have obtained a clear diagnosis and treatment plan. That's great news, and of course all the people who know you on this forum would want to know that.

            Good luck to you.
            Berkshire Road
            Berkshire Road
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            Last edited by Berkshire Road; 03-29-2007, 06:46 PM.
            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

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            • #7
              You are totally welcome on any of the forums. If we can help with support, it's why we're here.

              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

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              • #8
                yes please post anywhere you want. We are here to support each other.
                'The will of God will never take you where the Grace of God will not protect you.'

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                • #9
                  This is great news for you. Please continue to post, were all here to support one another.

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                  • #10
                    Thanks to all of you. It is a great pleasure to know I have support.

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                    • #11
                      Prettyeyes,

                      Did you have a Hydrodistention or just an office cysto? I was wondering because sometimes without the distention IC can not be detected..From what I understand it takes a hydrodistention to be forsure its IC...
                      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.

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                      • #12
                        Hey dont worry! you might still have IC!

                        at the end of the day your symptoms are still bladder related and painful so we will help you
                        x
                        Started with symptoms 2004 after a severe infection.
                        Was diagnosed with IC Feb 2006 after cystoscopy.
                        Diagnosed with vulvodyina and PN in july 2006.
                        Dignosed with ME and IBS Oct 2006.
                        Currently taking Amytriptaline 50mg, regular pain killers and birth control!
                        Also doing IC diet and regular use of heat packs.
                        Still struggling with IC and controling my symptoms so looking for some help

                        also recently had abnormal pap, CIN III and just had LEEP done 2007

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                        • #13
                          Sorry to hear of your Dio, Glad you found us. And most of all please stay. We are all here together for support & knowledge.
                          Hugs Sandra
                          "Never Give Up."

                          To view pictures of my creative interests and Maine Coon kittens click here: http://www.flickr.com/photos/[email protected]/

                          My Photobucket Link:
                          http://s237.photobucket.com/albums/f...ramack_photos/

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                          • #14
                            eosinophilic cystitis is very similar to IC, infact they use the same treatment plans as IC. It seems they use a lot of steriods to treat it and also they use DMSO. I wonder if it could just be a variation of IC??

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                            • #15
                              IC and EC are actually different. The IC Network does have a section explaining EC.

                              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

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