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  • Newly diagnosed can't leave my house

    I'm a nurse practitioner and am newly diagnosed with IC. I'm in so much pain I'm unable to leave my house...unable to sit down since the first of June. I've had nerve blocks, on elmiron, gabapentin, pain meds....unable to work and very scared. I don't have flares I hurt constantly. Anyone out there in the same boat?

  • #2
    Re: Newly diagnosed can't leave my house

    to the IC Network.

    How long have you been taking Elmiron? It can take six months or longer to become effective. Have you tried an IC diet? There's a link to diet information in my signature below. There's also a link there to AUA Guidelines for Treatment that lists some options you may want to try.

    And... if you go to https://www.ic-network.com/interstit...es-phenotypes/ you'll find information about subtypes, which may help you make treatment decisions.

    I hope you feel better very soon.

    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

    Comment


    • #3
      Re: Newly diagnosed can't leave my house

      Yes, I understand when you say that you don't have flares. You are actually having a flare right now but you just don't have it under control now. I have different names for my 'various' flares depending on the length lol. I have mini flares, flares, and major flares. I have had flares that last 4 hours to flares that lasted really long. However, with that being said, over time you will discover what works for you. Try a heating pad on your back with an ice pack on your bladder. How much Gabapentin are you taking?? I was told that Gabapentin only works for IC pain at high doses (2700mg to 3600mg). I really hope you start to feel some relief soon.

      Current Meds:
      1 Elmiron 100mg 3x a day
      1 Cimetidine 300mg 2x a day
      4 Gabapentin 300mg 3x a day (3600mg)
      1 - 2 Atarax 25mg at bedtime
      1 baclofen 10mg 3x a day as needed
      200mg of Pyridium 3x a day (usually do in cycles - on for a week or two as needed) - I am very careful about this.
      2 belladonna and opium suppositories as needed for pain daily.
      Bladder instillations (Lidocaine, Heparin, & Sodium Bicarbonate)

      I have tried but failed -
      lidocaine instillations, heparin instillations, oxybutynin by mouth also called ditropan, tylenol 3s with coedine, cyclobenzaphrine, Ativan, vesicare, Oxytrol patches worked for 3 to 4 years and then failed, I tried Uracyst and had some success but my urologist felt that it was not successful so we moved on to trying something else. .
      [/I]

      Comment


      • #4
        Re: Newly diagnosed can't leave my house

        I have been in your shoes. I was diagnosed in early 80s after having so much pain. I had bladder infections for years and then I was in the pain of severe bladder infection except my urine showed no bacteria. In 1987 I heard about Elavil for pain. It works. You may have to increase your dose until you get to the point the pain stops. For me that was 50 mg. at night. I know some who went up to 75 mg. at night to finally catch the pain.. Once you break the pain cycle and KNOW you can get better, everything will change for the positive for you because you will know how YOU can control these symptoms. The DIET is so important. Find out what causes flares. If you drink any type of iced tea, STOP. I loved sweet iced tea but just a few sips will throw me into a terrible flare. I drink KAVA no acid coffee. I can find it at some Walmarts or order online. No citrus and no 7 up, sprite, citrus juice. When you get your IC under control and YOU WILL, consider starting a support group so you can share your success with others. As a nurse practitioner you have so much to offer and can be of so much help to others. You can read my story in the remission thread.

        Comment


        • #5
          Re: Newly diagnosed can't leave my house

          I am in the same boat. I was diagnosed 3 months ago. I have not had a single day in months that my urethra wasn't burning. It hurts 24/7. I have been on the diet the entire time, but only 2 months on Elmiron. I just retired and we can't travel or enjoy life much now. I hope I go into remission soon, this is miserable��

          Comment


          • #6
            Re: Newly diagnosed can't leave my house

            One thing that can help is to keep a detailed diary, listing everything that goes in your mouth, urinary frequency and about how much each time, activities, and pain levels. Sometimes we can go back to the diary and find something in common when there's a flare.

            Sending encouragement,
            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
              Re: Newly diagnosed can't leave my house

              Thank you all so much..this is so scary. Never thought this could happen. My cystoscope was clear just small bladder. Is there a chance this is not IC?? Can you have IC with no glomerulations? Can't believe I'm in so much pain

              Comment


              • #8
                Re: Newly diagnosed can't leave my house

                Anyone have urethral, bladder and vaginal burning too?

                Comment


                • #9
                  Re: Newly diagnosed can't leave my house

                  I'm so sorry. This is an awful disease

                  Comment


                  • #10
                    Re: Newly diagnosed can't leave my house

                    600mg three times a day

                    Comment


                    • #11
                      Re: Newly diagnosed can't leave my house

                      Originally posted by Okie girl View Post
                      600mg three times a day
                      Are you saying you urinate three times a day and it's 600 mg? That's a lot, but bladder capacity isn't always reduced in IC. When I had my first cysto in the doctor's office, my bladder appeared to be normal and healthy, but when it was stretched during a hydrodistention under anesthesia, the IC became visible.

                      An IC diagnosis involves ruling out other problems, as well as on symptoms. One thing you can do is to treat yourself as if you know you have IC --- give the diet a try --- keep a diary. There's a link to AUA Guidelines in my signature below, which has some helpful information.

                      Sending healing wishes,
                      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


                      • #12
                        Re: Newly diagnosed can't leave my house

                        They are treating me for IC due to symptoms but no glomerulations. I take neurontin 600mg three times daily but urinate all day. I'm just not sure due to the constant nature of my pain, severe burning that the diagnosis is correct

                        Comment


                        • #13
                          Re: Newly diagnosed can't leave my house

                          Am following the diet? Any suggestions as to what I should do? Interstim is not helping

                          Comment


                          • #14
                            Re: Newly diagnosed can't leave my house

                            Originally posted by Okie girl View Post
                            Am following the diet? Any suggestions as to what I should do? Interstim is not helping
                            If you aren't following an IC diet, please click on the diet link in my signature and get started on it today --- and stick with it 100% for at least several weeks so you'll know how it effects you. There are also links to American Urology Association Guidelines and the sub-types of IC.
                            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


                            • #15
                              Re: Newly diagnosed can't leave my house

                              Give that D-Mannose for that--just the plain powder. It seems to help. I have had the burning symptoms too. That was years ago after I had been on different antibiotics from urologist. I had a OBGYN friend from grad school and he told me to get lactobacillus capsules and take them and plain yogurt by mouth daily. He said to use the plain yogurt with a lactobacillus capsule opened into the yogurt (about 1.5 tablespoons of yogurt to 1 emptied capsule lactobacillus capsule (get at health food store). Let it sit at room temp and then insert vaginally at night. You can get one of the over the market yeast meds with tube with it and use that tube with this mix. I did that for a month. It worked. I have not had the burning since then, so I think that was not part of the IC in MY case even though at the time I thought it was. I can't stress enough about the diet. I have been in a flare for a month because every time I eat a few pecans (my fav food) I double over. I keep thinking, Nah it can't be caused by just a few pecans but it is. YOU WILL GET BETTER. As Donna said, keep a chart of your symptoms and what you ate. YOu can look back 3 yrs. later and see what caused a problem and how you got over it.

                              Comment

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