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  • Anyone Else Here With EC?

    Let's Talk!

  • #2
    I know there are some with EC who visit occasionally. Hopefully they will see your post.

    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


    • #3
      Hi prettyeyes,

      I too have EC. Willing to chat anytime you are. Hope you are doing well.

      Jeanne

      Comment


      • #4
        Hi Jeanne.D

        I have been having bladder issues for a year now. My symptoms are frequency, urgency, painful urination and blood in my urine (gross and microscopic). I also cannot hold my urine for a long period. Does that ever happen to you? I was diagnosed by a deep bladder biopsy. My urologist said that I had a very large number of eosinophil cells in the bladder tissue. My bladder was also severely inflammed. I don't have any ulcers. I am taking hydroxyzine, pyridium plus, enablex and percocet (for severe pain). I have not seen much improvement in my symptoms. How do you cope with your symptoms? I will say it has made a huge impact in my life.

        Comment


        • #5
          Hi!

          May I ask, is the deep biopsy different than the regular biopsy the surgeon does during the hydro? Or just the same one and they test for EC?

          Your symptoms sound even closer to mine than most here so I'm wondering is it possible that I have that instead, or along with?

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

          Comment


          • #6
            Moonheart, I suggest you discuss this with your physician. The symptoms of the two diseases are very similar.

            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


            • #7
              Hi, Moonheart

              I am not exactly sure what the big difference is. The way my Doctor explained it to me was that he was going to take a lot more tissue than he would during a regular biopsy. I still think I may have IC as well. When I see him again I will ask him.

              Comment


              • #8
                Sorry to hear you are having such a difficult time. My symptoms are pain, burning, dysuria, bladder spasms, Hunner's ulcers, and severe bleeding. I'm not your typical case as my symptoms and disease process are much more intense than the norm.

                A deep bladder biopsy usually involves taking tissue from all the bladder layers not just the mucosa. The bladder has a mucosa and three layers of bladder muscle. Eosinophils infiltrate my entire bladder.

                I have had this disease for 33 years. Nothing seems to help me but as I have said, mine is a much rarer form of the disease.

                If I can help you or answer any questions you may have, please let me know.

                Hang in there

                Jeanne

                Comment


                • #9
                  I have been curious about this subject, when I have gotten bloodwork done the last 5 years my Eosinophils are higher than normal. They are not way up there but there is always a flag stating high on my bloodwork. Did any of you have a high reading on your bloodwork? I also have grass and tree allergies so I am not sure if that alone can make the number higher? I tried to take an antihistamine(atarax I think) but it made me flare really bad so I went off it. I just find it interesting. How did your drs determine you needed the biopsy, I am not sure if I had one when I had my cysto or not. Like I said just curious.

                  Comment


                  • #10
                    Hi to all of the ladies with EC, I was dx with EC 2.5 years ago, unfortunately mine is as the Specialists said "A very rare form of Eosinophilia" I have for the past 2.5 years had to go into hospital for biopsies any thing from 7 to 17 at a time. my EC has also had cancer cells on top of it. I have massive allergies, to the point that there is not much that I can eat now. I survive mainly on Ensure, coffee and what I can get into my mouth that doesnot cause me to have a metalic taste or it no fizzing from it. If I do eat any thing that causes the fizzing or tastes metalic I end up in a worse flare than I have been in for the past 2 years. I am bed bound now as I also have Arachnoiditis which is akin to MS. I am treated with Opiates, Oxybutilin for my EC, but have many other meds for my other medical conditions. Heart Disease, Asthma, chronic fatigue, fibromyalgia plus many more. I have a suprapubic catheter inserted as I have not been able to pee since 1994 and use to self cath, but as I got further on with mu med conditions the gave me an indwelling then 2 years ago the suprapubic. I suffer with chronic pain and spasms in the bladder, intermitent bleeding, must admit that since having the indwelling cath the bleeding has slowed right down, I pass a lot of EC cells through the cath, My Eos cell count in the blood is very high, I suffer badly with Sinus, joint pain, swelling of feet and hands but not normal odema, my stomach is always blotted and the area around my bladder is very tender. I have been suffering from what I thought was Thrush in the vagina to be told by Spec last week that it is Eos cells. I could go on for hours writing about my situation, so will finish and hopefully get back into read replies as soon as I can, that is something that has recently happened to me, is my eye sight has gone funny and at time I cant see much through blurriness, my eyes are constanly dry and I have to use drops for that, but that is not the cause of the blurriness. Regards Phiddy

                    Comment


                    • #11
                      All of you with Eosinophilic Cystitis lets talk

                      Would love to speak with others who have EC.

                      Comment


                      • #12
                        Hi English

                        That would be great, but I dont know how we go about that, do you? I dont know if we can instant message through this site, maybe Donna can help us with this.

                        Comment


                        • #13
                          You can communicate through the Private Message system or on the forums, but we don't have instant messaging.

                          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


                          • #14
                            Hi, I have IC, EC and VUR(bilateral) I would love to talk to someone whe knows about EC

                            Comment


                            • #15
                              I have both IC and EC also VUR (bilaterial) Vesicoureteral Reflux (both) which has occurred because of the shriveled size of my bladder and the flap valves are distorted so that I am open to kidney failure. My Dr is urging me to have my bladder removed, but I have heard from some that it doesn't always end the pain or answer the problems with EC. Do you have thoughts on this?

                              Comment

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