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It's back after a long remission

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  • #1

    It's back after a long remission

    I don't know how many of you will remember me here. I was diagnosed with IC in 2006. I posted from 2003 till about 2006. My IC symptoms got less and less frequent and by 2010 I was nearly back to normal. I suppose I was in remission.

    Last month, while getting ready to go to visit my son, my husband made coffee that morning and it was stronger than usual. That's when my symptoms started coming back. This weekend was the worst and I will be going to see my doctor tomorrow morning. My main and only symptoms are severe urethral burning, bladder pressure. Urine is clear. Some frequency, every 30 minutes (but I'm drinking lots of water). No getting up at night to pee.

    I have no idea what has transpired as far as help for IC. I know about the diet and I'm now back on Prelief and planning menus to reduce acid. Since I have been out of touch with this forum, I have no idea if there are other medications (herbs) out there that I can try.

    My urologist only had me on amitriplyine and I cant remember if I was on Elmiron or not, I can't find a record of it. I haven't made an appt with this urologist because I would like to seek out another one who knows more about IC. This would make it my third urologist. Do urologist know more about IC now, or is it still an issue?

    I have also been treated with Estrace (estrogen) back in 2006, without help. I'm pretty sure my doctor will recommend it again at my appointment tomorrow. I'm 58 years old. I was going though peri-menopause during the first IC flare. It took me nearly four years to get though the menopause stages.

    Please give me some guidance on where to start first in these vast forums. Being in pain (severe urethral burning) is enabling me to spend much time on the computer. Thank you for your help.
    Connie
    Tags: recurrent, remission, returning, urethral burning
  • #2
    Hi Classics, I remember you! I hate to say it, but,..welcome back! Sorry to hear you're having to deal with this again after having what sounds like a nice stretch of remission!

    I'm afraid I can't be of much help with most of your questions. I'm not exactly up to date on the new meds or supplements as I seem to be doing fine with what I've been taking (Cystoprotek). I haven't had the need to search further.

    Do urologist know more about IC now, or is it still an issue
    I'd say it's getting better all the time, though we still hear the occasional "My Uro doesn't believe in IC", or people saying that they are treated like it's imaginary. My guess is there are still plenty of dinosaurs out there practicing.

    You might try looking up your old posts. Perhaps you mentioned whether you were taking Elmiron, and/or anything else you found helpful. Maybe it will help again!

    It's good that you're back on the IC diet. Since you've found your way to remission before I'd take it as an indication that you can get back there again!

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

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    • #3
      I'm sorry your symptoms have returned. One good thing is that you have had a fairly long remission --- and it will happen again.

      And yes, I definitely do remember you.

      Warm hugs,
      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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      • #4
        Originally posted by VickiB View Post
        Hi Classics, I remember you! I hate to say it, but,..welcome back! Sorry to hear you're having to deal with this again after having what sounds like a nice stretch of remission!

        I'm afraid I can't be of much help with most of your questions. I'm not exactly up to date on the new meds or supplements as I seem to be doing fine with what I've been taking (Cystoprotek). I haven't had the need to search further.


        I'd say it's getting better all the time, though we still hear the occasional "My Uro doesn't believe in IC", or people saying that they are treated like it's imaginary. My guess is there are still plenty of dinosaurs out there practicing.

        You might try looking up your old posts. Perhaps you mentioned whether you were taking Elmiron, and/or anything else you found helpful. Maybe it will help again!

        It's good that you're back on the IC diet. Since you've found your way to remission before I'd take it as an indication that you can get back there again!

        Vicki
        Hi Vicki!

        Thank you! I'm glad we remember each other. I did find my IC story and saw that I was on Elmiron. I'm just not sure how long I was on it. I'll be off to see the doctor in about 15 minutes. Talk later.
        Connie

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        • #5
          Originally posted by ICNDonna View Post
          I'm sorry your symptoms have returned. One good thing is that you have had a fairly long remission --- and it will happen again.

          And yes, I definitely do remember you.

          Warm hugs,
          Donna
          Hi Donna,

          I remember you the most! You are so helpful to everyone. I'm glad you remember me. Thank you for the encouraging words. I too, hope that a remission comes back. Off to the doctor in about 10 minutes. I hope it will be a good appointment.
          Connie

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          • #6
            I'm back, too. Here's hoping we find some relief soon!

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            • #7
              Originally posted by sjoprice View Post
              I'm back, too. Here's hoping we find some relief soon!

              Hi sj,
              Thank you for your comment. See you around the boards. I went to my MD and she prescribed Amitryptiline and Naproxen.
              Connie

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              • #8
                fivefoottwo

                Hi Classics,

                My goodness, I was reading your 'return' story, and our symptoms are os similar I could have written it!!!!! Am being bothered right now, 98% urethral, with a little bladder discomfort mostly feeling like I have to go when I just went. I am using amitriptyline and Prelief and I am feeling great for a couple weeks or so, then symtoms return. Have stayed away from the 'no' foods because most of them I don't like anyway. You feel good for a for a week or so and you feel great and the symptoms return and the hopes get dashed again. One question that maybe someone can answer for me. My regualr doc say that with IC you can have white and red cells in your urine when it is not really a UTI. I know the symptoms of a flare can sometimes mimic a UTI, but I always thought when you tested positive for a UTI you needed meds for it. Anyone else ever hear of this?

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                • #9
                  Oh, and I use pyridium too which I may be doing shortly. I am getting pretty uncomfortable!!

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                  • #10
                    HI sjoprice,
                    Are your symptoms similar to classics too? Being mostly urethral I mean? Maybe you can help answer my question about UTI's and IC.
                    Thanks a bunch.

                    Comment

                    • #11
                      Originally posted by fivefoottwo View Post
                      Hi Classics,

                      My goodness, I was reading your 'return' story, and our symptoms are os similar I could have written it!!!!! Am being bothered right now, 98% urethral, with a little bladder discomfort mostly feeling like I have to go when I just went. I am using amitriptyline and Prelief and I am feeling great for a couple weeks or so, then symtoms return. Have stayed away from the 'no' foods because most of them I don't like anyway. You feel good for a for a week or so and you feel great and the symptoms return and the hopes get dashed again. One question that maybe someone can answer for me. My regualr doc say that with IC you can have white and red cells in your urine when it is not really a UTI. I know the symptoms of a flare can sometimes mimic a UTI, but I always thought when you tested positive for a UTI you needed meds for it. Anyone else ever hear of this?

                      Hi Fivefoottwo,

                      I'm not sure about your question about the cells but when I first had symptoms back in 2003 and tested negative for a bladder infection, the doctor put me on antibiotics anyway. He actually put me on two different kinds, when the first round didn't help me. The antibiotics did not change my symptoms, however. Today I tested negative for infection but there is a trace of blood in my urine.
                      Connie

                      Comment

                      • #12
                        Originally posted by fivefoottwo View Post
                        HI sjoprice,
                        Are your symptoms similar to classics too? Being mostly urethral I mean? Maybe you can help answer my question about UTI's and IC.
                        Thanks a bunch.
                        fivefoottwo--my initial symptoms back in '08 were very much like a UTI that just wouldn't go away. So I guess they were more urethral. Urgent Care docs and my own doc tried the usual route (antibiotics)--because at first I DID have trace amounts of cells, but after treatment I was still symptomatic with urgency and discomfort and urinalysis showed that I didn't have a UTI. It was finally an NP at Urgent Care who suggested IC and sent me to a Urologist for a Cystoscopy. This time around, I still have sort of a dull urgency but I feel a great deal more heaviness or pressure in my bladder and some overal pelvic discomfort. Elmiron helped me, as well as switching to water ( I was a chronic Diet Coke drinker). I went into remission and ceased the meds. However, these past few months, I had begun drinking WAY too much Diet Coke and I believe this is why I'm flaring again.

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                        • #13
                          Hi classics,
                          I remember you! I have been on & off these boards as well since 2005. In & out of remission too. I think what has helped me is staying on 300mg of elm iron, norttryplylne & an antihistamine at night. My flares come & go ( mostly urethral discomfort) but usually pass within 12 hours or so. Tonights culprit was frozen yogurt with fresh berries! Water with baking soda helps too with urelle. I hope you feel better soon!
                          Melindap

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                          • #14
                            Hi sjoprice,
                            Thank you for your reply. I ended up taking a dose of pyridium last night and my symtoms went away. Have no idea what the day will bring. I was diagnosed around Oct. of 2010. Started with treatment for a UTI at that time. It worked, A month later another UTI but this time no bad cells. They treated me anyway with Cipro. 7 days later the symptoms were still with me. Was sent to a Uro and he put me on Elavil and pyridium as needed. Will go the a couple weeks with no symptoms, then I will have them for a few days again. Stress is a big factor as I try very hard to stay with the IC diet. My symptoms are always urethral unless they get pretty bad and then I have a lot of urgency. If any of you care to stay in touch, feel free to private message me and I will send my address. Keep hoping for a emission of years! Oh, cysto showed a normal bladder like it does with many people but had other tests that ruled everything else out.

                            Comment

                            • #15
                              Originally posted by MelindaP View Post
                              Hi classics,
                              I remember you! I have been on & off these boards as well since 2005. In & out of remission too. I think what has helped me is staying on 300mg of elm iron, norttryplylne & an antihistamine at night. My flares come & go ( mostly urethral discomfort) but usually pass within 12 hours or so. Tonights culprit was frozen yogurt with fresh berries! Water with baking soda helps too with urelle. I hope you feel better soon!
                              Melindap
                              Hi Melinda,

                              I told my MD about Elmiron, but she didn't know what it was. She never has prescribed it before. The amitriptyline I'm taking is making me very sleepy, I suppose this side effect is normal and hopefully I'll adjust to it in a few days.

                              My doctor sent me for blood tests and a bone density test x-ray. She probably noticed my arthritic fingers and knows I have a history of osteoarthritis and joint problems. I'll see her in two weeks to go over the tests.

                              btw, my first name is Connie. Do any of you use Facebook? I "liked" this site on it and read that there is a live chat on here. I may seek that out, too.
                              Connie

                              Comment

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