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Having an endless Flare-up

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  • Having an endless Flare-up

    Hi all.I'm new to the forum and from the UK.
    I'm looking for some messages of hope, I suppose.I'm 35 years old and have been suffering a couple of years, with some partial remission in between the beginning, which was horrible and scary, and what is now a month-long flare-up, despite diet, yoga, supplements and so on.I resisted formal diagnosis via Cystoscopy because I didn't want to aggravate the condition.
    Just been through a break-up from 5 year relationship, house move and so on. Maybe that's related?
    The flare-up seems to have been triggered by sex with my ex!! But after a month now it won't go away, I have terrible urethral burning, feeling of insides falling out, pressure: worst of all are the feelings of despair that I will never get better. It's really hard not to give in to these.I want to start a relationship with a new person, but how can I possibly do that when I am like this? I feel like I will never have a normal sex life again, and that in a way I am deceiving the new person into thinking I am like everyone else, when in fact I have all these problems. The time has not yet come to have "the talk". ARGH!!
    I am considering doing one or a combo of the following: Alkaline diet; Anti-Candida diet; Bladder distension and instill if diagnosed properly.
    Please can anyone offer messages of hope or advice?
    Thank you so much.

  • #2
    1. try Elmiron. If you can not get in UK get online from Canadian pharmacy.This is like lotion for your bladder
    2. Add amitryptilline.25 to 50 mg. This will block the pain signal that goes from bladder to brain
    3. Add ranitidine 300mg daily. This is an H2 blocker and stops the degranulation of mast cells that causes the pain.It is commonly used for heartburn and can be obtained over the counter.
    4. Follow the ic diet carefully
    5. Do vaginal stretching and pelvic physical therapy.. You can find some great books for this on this web site.
    6. Get some narcotic pain medication for severe pain
    7. Do all the above and then be patient.. YOU WILL GET BETTER BUT IT WILL TAKE TIME!


    • #3
      There is hope...

      Hi AJ2011. I'm 37 and also in the UK, and I have to say that the advice given by Barb M is pretty much what worked for me.

      I had a cystoscopy which confirmed what I already knew, but it took 6-7 months of horrible pain (and no life!) before the Elmiron(300mg daily) and Amitriptyline(30mg daily) started kicking in. After that, I could eat what I wanted and even drink alcohol. Although in the first flare sex had made things worse, I started a new relationship around this time and it was almost as if sex actually helped - I would be a bit sore for a short while afterwards but in the long term the pain disappeared for the most part.

      About 3 months ago I split up from my now-ex - and 6 weeks ago I started with the pain again! It might sound crazy but I think that sex was actually helping - lots of people on here report that pelvic floor exercises etc do help, so I suppose it isn't too far-fetched. Like you I'm hoping this will go away again like it did before - but maybe I need to find a new man for that to happen!

      I think that it is the nature of this illness to come and go when we are least expecting it - and as long as we remember this, there is hope even on the darkest of days. I hope you're feeling better soon - but really - see a urologist and ask for Elmiron. Not all consultants will prescribe it, as it isn't actually licensed in the UK, but these days with 'patient choice' you can do some research and ask your GP to refer you to one that does. In the meantime, ask your GP for Amitriptyline (Elavil in the US), I felt a bit groggy for a few days/week at first but it soon disappeared - it also helps you sleep.

      I know you posted this a while ago, but if you're still around, let me know how things are going.


      • #4
        Hi are you doing now? I just saw your post..I have just started flaring two weeks ago and once again I am a mess..Alkaline diet is a must and there are some good books to read if you pm I can tell you which ones..they have given me hope and encouragement once again...I am also back on Cystoproteck which helped the last time..drinking lots of ph9.5 water as well as ativan .5 mg as needed..I was already on celexa 20mg which I had weaned down to 5 mg over the last six months...I am also taking Amoryn a natural product for depression...sincerely carol


        • #5
          Thank you

          Many thanks for the kind words and encouragement on this post.
          I have recently been into hospital (a week ago) for Cystoscopy and Laporoscopy, so they checked for Endometriosis too and didn't find it- thank goodness. Also they didn't find scarring or ulceration on my bladder (although they didn't do the biopsy due to equipment malfunction) , which must mean that I only have a mild case or that what I've been doing so far since August has calmed me back down again. Although I have just had a standard urine infection after the op and obviously the accompanying fears..
          I have been rigidly sticking to the IC diet. In fact when I deviated the other day by having a glass of wine, I really felt the effect. Also I've been taking Cimetidine, bio fish oil, zinc, vitamin A, Loratidine and a probiotic. Drinking Marshmallow Root tea and peppermint tea religiously. Avoiding stress
          Krysia, thanks very much for sharing your experiences with me- it's very helpful and as my next step is to do exactly as per your advice (GP then Urologist) I will be sure to ask for Elmiron. and try Amytriptyline.Also, I think I know what you mean about pelvic floor tone helping. When I was doing Pilates regularly, sex was improved. There was still pain, but the end result made it much more worthwhile!
          Carol, sorry to hear you're on a flare again I have ordered a tub of Cystoprotek but it was so expensive to ship from the US once I had paid shipping and customs that even if it did help I'm not sure I would be able to sustain it- wish we could get it here. But I will certainly try what I do have and see what happens. I hope you're doing ok.
          I am certainly keeping the faith and staying positive.


          • #6
            Barb 1

            any one in Canada with problems with their interstim