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IC back after years of relief 😣

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  • IC back after years of relief 😣

    Hi

    I used this wonderful forum in 2012 when I first developed serious issues beginning with a UTI, then into thrush then the hell of constant burning, urination, you all know the rest and the misery it brings. I just read through my original posts and it's carbon copy again. Started with a sudden UTI - no infection present just small amount of blood, culture was negative and I was given three days of Macrobid just to "be sure".
    Following this I then had to try oral fluconazole, and the pessaries, and then I menstruated and things just got bad. I spent the last two days just wanting to sleep. It waxes and wanes but there is ALWAYS at least a low level burn in my urethra. D Mannose helps a bit - and some mornings I wake up feeling like its better only to find as soon as I pee it slowly all creeps back in again. Evening is worst. And yesterday I was at a train station, felt anxious (who wouldn't when in constant pain, right) and was obviously holding my pelvic floor tight, the burning got so bad I felt like I was trembling all over - and when I finally got into the train station toilet my pee was lava. Gradually the burning did subside to a more manageable level but it's making me sweat just thinking on how much that hurt. My appetite is ****e, I noted this happened last time and I feel really low.
    I just hope it vanishes again as this is what happened last time. Months of pain then nothing but the odd twinge or frequency (when period due) but NOTHING like this for years. I really thought I had seen the back of it. More fool me. Hate it. And I hate that any of us have to deal with this.

  • #2
    Hi LittleWitch,
    im so sorry to see your return of your ic symptoms. Ya, this disease is insidious. I have had it since 2005 and have had periods of remission and flare ups. Longest remission was 3 years. I’m always trying to figure out what triggers them. I do have pelvic floor dysfunction so my current flare and last years flare I think were triggered by doing ab work and lower body work at the gym. I’m sure my diet was not perfect either, although I try to follow the ic diet pretty religiously. When I am feeling well I can eat most things but avoid tomatoes and spicy things. I can drink low acid coffee with Prelief. Currently my flare started last month of feeling twinges in my bladder. Than a few days later I ate a ripe pear of all things that caused menstrual like cramps in my bladder. The next morning after having my 1 cup of low acid coffee, and boom, my ic was back!!! Couple hours of urgency, burning and frequency and now I am left with lower bladder (trigone area) and urethral burning 24/7. I drink loads of alkaline water and immediately cut out coffee or anything possibly acidic. My naturopath currently has me on the AIP diet (no grains, dairy, etc). I have been on it for almost 2 weeks and am feeling better. I also do series of 6 bladder installation (1x week) with a pediatric catheter of herprain and a steroid at my Uro’s office. I have done PT in the past so I do my pelvic floor stretch and use vaginal Valium. I am also on Elmiron, uribel and nortriptilyn. My flares usually take a few months to calm down but doing all of the above helps. Also, a little bit of baking soda in water helps neutralize acid in your urine. I am hoping you get back to feeling better soon!!!

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    • #3
      Thank you for your reply!
      It's the dread of knowing it will take months to settle isn't it. You have just jogged something though, prior to the "UTI" I got suddenly end of March that turns out to be another horrid flare I was pushing myself very hard working out. I did some intense yoga and afterwards could sense that perhaps I hadn't relaxed my pelvic floor during. Then that left my head. I bet that was my trigger. Or at least a contributing factor.
      I haven't had a coffee since this started and I miss it terribly. I can manage the odd alcoholic drink but it has to be a weak vodka with lots of soda water. And only one. Woo! Party!

      I need to get back into my GP and see if I can get him to really hear me this time - I think pelvic therapy is a must.
      In 2008 I had a very fast but very traumatic third labour - my son was BIG and I am not ha, and he had shoulder dystocia. They really had to drag him out of me and I mean drag. I was also given my third episiotomy but in a Y shape and as I understand it this can further down the line cause weakening/tension of the pelvic floor. I am amazed I look normal down there to be honest. Certainly don't sodding feel it! It's a nightmare when you have a healthy sex life too - because this **** really makes me dread it however I find that it can actually help me relax, although sometimes I pay for it but not immediately after, usually a few hours until things get "irritable" and I need my heating pad. Which I really cannot do without I would cry if I couldn't find it!! It's a microwavable cuddly fox and I would marry the thing if I could.
      Ugh. Isn't it all just one massive pain in the vulva!

      Comment


      • #4
        I'm so sorry your symptoms have attacked again. I suggest you start an IC diet today to see if that helps. It can also help to keep a diary, noting foods, drinks, frequency, pain levels --- you might be able to identify some triggers that way.


        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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        • #5
          I understand! I can do vodka/sprite ok with lots of ice. Although I have not tried it since this latest flare! It could have been your intense yoga. I definitely recommend giving PT a try with some vaginal Valium. It might help calm things down. It’s funny how people use heat or ice. For me, ice is most effective between my legs! Yes, the thought of it taking months to calm down bums me out, but what can I do except wait it out?? You just have to believe it went away before, it will again. Just stay the course and be careful of what you eat/ drink. You will beat it back again!

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          • #6
            Hi all.

            I became pretty poorly with another UTI and have been on my arse but very, very slowly getting there now (I think, it's hard to hope for that and I'm not a superstitious person but I get really wary of saying a flare is coming to an end!)
            I ended up with chronic thrush again, another three days of Nitrofurantoin and it was raging. I was so swollen for so long that now the swelling is gone my lady bits feel tiny in comparison it's so bizarre. This all just takes over and alters things that we take for granted when well.
            I have eased off on the probiotics now as I wasn't certain I wasn't causing TOO MUCH good bacteria, I have used baking soda in a warm bath (some easing of general soreness and definitely took last of swelling down and eased pee urges too). STI tests all normal, I was weirdly hoping it was something as simple as that. I'm in a relatively new relationship and you never know do you but no. Nothing, Doc just said during swabs (just like last time I went through this) that there was a lot of white stuff. I know Doc! It's thrush, and I smell like a bakery sometimes down there which you would think would be nice right? WRONG TRY AGAIN PLEASE FIX ME. πŸ˜‚
            Anyway. I had a couple vastly improved days and then yesterday I came on my period. I am not using tampons. To be honest today I have sat on a towel and watched Netflix and done little else as it seems the period is annoying my vagina inside. Best way I can put it. Had gentle sex Sunday and it was great. Monday morning sex right before I started to bleed it was sore again. Go figure. The healing process is as perplexing as the flares themselves, I feel like I should be fully better, but then I remember that I was so so ill not two weeks ago and full of antibiotics then sodding yeast. Damage will have been done for sure, I am probably shedding cells inside like a motherf****r.
            I have gynae on 26th June. I intend to talk his/her head off because this is ridiculous. And also, if candida was a person? I would give them such a smack in the microorganisms.

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