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  • new flare after 2 years and trying new things

    I was doing fine for about 2 years. I was doing instills every two weeks of 40,000U of heparin. I also had lidocaine but did not need it. I was also taking daily supplement of 120mg Vit C, 500mg Glucosamine Sulfate, 1600mg Collagen Type II, 400mg Chondroitin Sulfate and 200mg of Hyaluroni Acid and 200mg aloe vera.

    At the end of May I had back to back UTIs presumably from catheterization of instills. I also have HSV2 occasional breakouts that started during menopause about 5 years ago. They were infrequent I looked it up but never went to the Dr. about it because it was not that bothersome and did not make my IC flare. After my UTIs were over I did have a small outbreak so I did go to the Dr. this week and took a blood test and am waiting for the results of that. In the meantime my flare is not going away. I have started taking Bladder Rest plus started doing my instills every week now instead of every 2 weeks, that now include the Heparin, 20ml of 1% lidocaine and 3ml of sodium bicarbonate. I also take 100mg of aloe 2x a day and 500mg of Magnesium. The heparin is supposed to support your bladder lining, the lidocaine is for pain and I am assuming the sodium bicarbonate is to help with the pH of your bladder. I was not able to do my instills until the UTI was gone so my first one was last thursday, the lidocaine works immediately but only lasts for about 1 1/2 to 2 hours. Oh and I also think I have a yeast infection now maybe from all the Macrobid? I am also doing a 14 day course of vaginal inserts of premarin supposed to help with UTIs, dryness and help tissue, I am wondering if that is causing my swolleness down there and a little itching or a yeast infection. When I saw the nurse practitioner last week she only addressed my HSV2 but blisters were gone, and I did not even think about a yeast infection. She did not do an exam . . .My Dr. is out and they are not doing exams because of Covid-19, bunch of BS! sorry but I feel a lot of people are not getting proper care of their every day things because of all this.

    My symptoms are all swollen down there, itching but no discharge, tingling and dryness around the bottom at the opening of my urethra, mild backpain, no frequency but urgency when I have to go I have to go! I also have a different symptom that I haven't heard yet and that is it seems worse when my stomach is empty, after I eat I feel better . . . My IC was always more muscular pain and bad bladder throbbing only when I laid down at night . . .. Going through menopause really messed with it. It has been 5 years since last period but I was spotting all the way until 2017, not really spotting but always a maroonish tint on my pad (I wear light pads during the day). That is gone now. But sometimes I swear I will have slight syptoms of premenstrual things like tenderness under arms and breasts, backpain and bloating like now.

    Oh and also I am also glad I came back here to read because I forgot about loradatine (clariten) it did help me as well, is it safe to take that every day? Does it just calm down the mast cells and you can stop after that or do you have to take it everyday to keep it at bay?

    Anyway I started reading on hear to see if there was anything new and was wondering if CBD oil has worked for anybody? It is so confusing but I have read a little and found out what I can buy and what dose I should take to start out but was wondering if it has helped anyone with their IC problems.

    Thanks and am looking forward to any advice. I know it is a lot but I guess my main questions would be:

    1. Has CBD oil help anyone with their IC and if so what symptoms?

    2. How long after a flare caused by several things does it take to get back to "normal" I feel if is going to but when?

    3. My supplement of choice used to by Cystorenew but had bladder rest on hand, has anyone had bad luck with Bladder Rest? Good luck?
    Last edited by tangerine3; 07-22-2020, 03:26 AM.
    Diagnosed with IC sept. 2008, treatment then was hydrodistension, heparin instills for about 4 months and IC diet; symptoms lasted until sept 2009. Then only a couple of relapses overworking, stress etc. Then completely in remission until Jan. 2016 now pretty much symptom free as of mid august 2016.

    Symptoms: overall body aches, dryness feeling at vaginal opening, sitting makes it worse, standing makes it worse, stress makes it worse, no frequency or urgency, worse symptom is at night with panging of uretha/bladder.

    - went on diet, started Cysto Renew 3/31/16 and yoga at least twice a week.
    - tried uribel but really not for my symptoms since it seems it is for frequency and painful urination which I don't have
    - Ativan when needed to relax.
    - Elmiron only took for a couple of days; didn't like it
    - took atarax 1/2 10mg atarax pill at night really helped but gave me nightmares
    - tramadol worked great for back aches
    - generic claritin D worked best for me for calming bladder down and my panging
    - still taking cysto renew 4x a day and believe this and diet helped the most.
    - took dosage of cysto renew down to 2x a day and still ok

  • #2
    It seems like if we have IC, our bodies don't want to let us forget it!

    Are you instilling the lidocaine before you put in the other ingredients? If not, you might want to give that a try --- it might make the relief last longer. Also --- if you feel like you have a yeast infection, your doctor may be willing to prescribe for it without seeing you.

    The Covid pandemic is certainly raising havoc with everyone's lives. I just wish there were a way to get it under control without masks and isolation, but it seems like every time an area loosens up on restrictions, there's an increase in new cases --- and I wonder how many cases there are out there that aren't being reported because they are having milder illness and don't seek testing or medical help.

    Almost forgot to mention that Bladder Rest helps my symptoms. I don't take it full time, but for me it's a great "as needed" supplement.

    Hope you feel better 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
      yes i mix all ingredients together, i'll try the lidocaine first next time (tomorrow TG), thanks! As for the yeast infection I'm not sure. I haven't had a yeast infection in probably over 35 years, there is no discharge so just guessing because it is red and swollen down there with a little itchyness. I'm also thinking now that the premarin might be irritating me. I can get a 3 day monistat dose at walmart but don't know if you should use it if you don't really have a yeast infection. . . . .

      As for Bladder Rest I thought supplements like it or Cystorenew took about 3 mos before any symptom relief. How do you use it as needed for frequency and urgency only I need something to help recover from the 2 UTIs HSV2 breakout, etc. One symptom I cannot stand is this constant feeling like pulling down from the inside from my bellybutton like a tugging and the dryness at the end of my urethra. I wonder if that is what they call bladder spasms . . . Funny thing that is happening is just 600mg of ibuprofen puts it at bay. In the past ibuprofen did absolutely nothing. I think I have a lot of inflammation going on somewhere. I did another urine culture that just came back negative for nitrates but my WBC was high haven't heard yet if any bacteria grew though.
      Diagnosed with IC sept. 2008, treatment then was hydrodistension, heparin instills for about 4 months and IC diet; symptoms lasted until sept 2009. Then only a couple of relapses overworking, stress etc. Then completely in remission until Jan. 2016 now pretty much symptom free as of mid august 2016.

      Symptoms: overall body aches, dryness feeling at vaginal opening, sitting makes it worse, standing makes it worse, stress makes it worse, no frequency or urgency, worse symptom is at night with panging of uretha/bladder.

      - went on diet, started Cysto Renew 3/31/16 and yoga at least twice a week.
      - tried uribel but really not for my symptoms since it seems it is for frequency and painful urination which I don't have
      - Ativan when needed to relax.
      - Elmiron only took for a couple of days; didn't like it
      - took atarax 1/2 10mg atarax pill at night really helped but gave me nightmares
      - tramadol worked great for back aches
      - generic claritin D worked best for me for calming bladder down and my panging
      - still taking cysto renew 4x a day and believe this and diet helped the most.
      - took dosage of cysto renew down to 2x a day and still ok

      Comment


      • #4
        well finally flareup is pretty much gone almost back to normal. Things I had to do not sure which worked

        - Did you know for dryness feeling you can use plain yogurt externally around your vagina area and instill as well says can get rid of yeast infection? It worked better for me than the Premarin which I think actually did harm https://www.healthline.com/health/wo...-home-remedies

        - every other day (instead of weekly) of my 40,000U of Heparin, 3ml of sodium bicarbonate, 20ml of 1% lidocaine or 10ml of 2% lidocaine instills for 7 days

        - claritin every other day that I did not do instill

        - 600mg of ibuprofen when needed

        - rest 1/2 hr each day (i'm usually running around like a chicken with my head cut off

        - TENS machine everyday for 1/2 hour (while resting), place pads in the suprapubic area as high as you can tolerate on continuous mode https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5367222/

        - diet

        - started bladder rest or similar again

        - yoga if feel like it

        - 14 day dose of omeprozole

        - prelief before eating anything you think might cause problems

        - 5 days mini vacay at beach and doing nothing but shopping and lounging around by pool; took everything with me 🙄

        Hope this helps!
        Diagnosed with IC sept. 2008, treatment then was hydrodistension, heparin instills for about 4 months and IC diet; symptoms lasted until sept 2009. Then only a couple of relapses overworking, stress etc. Then completely in remission until Jan. 2016 now pretty much symptom free as of mid august 2016.

        Symptoms: overall body aches, dryness feeling at vaginal opening, sitting makes it worse, standing makes it worse, stress makes it worse, no frequency or urgency, worse symptom is at night with panging of uretha/bladder.

        - went on diet, started Cysto Renew 3/31/16 and yoga at least twice a week.
        - tried uribel but really not for my symptoms since it seems it is for frequency and painful urination which I don't have
        - Ativan when needed to relax.
        - Elmiron only took for a couple of days; didn't like it
        - took atarax 1/2 10mg atarax pill at night really helped but gave me nightmares
        - tramadol worked great for back aches
        - generic claritin D worked best for me for calming bladder down and my panging
        - still taking cysto renew 4x a day and believe this and diet helped the most.
        - took dosage of cysto renew down to 2x a day and still ok

        Comment


        • #5
          I'm glad you're feeling better --- it's been a long time since I've heard of the yogurt treatment --- I'd almost forgotten about it. Thanks for the reminder.

          You might want to be cautious about ibuprofen --- it's a problem for some ICers, including me. I can get away with a few doses, but don't take it often.


          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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