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'In pain all the time': will there ever be a cure for chronic, life-changing UTIs?

Discussion in 'Other health news and research' started by hinterland, Feb 20, 2019.

  1. hinterland

    hinterland Senior Member (Voting Rights)


    roller*, Simbindi, DokaGirl and 8 others like this.
  2. NelliePledge

    NelliePledge Moderator Staff Member

    UK West Midlands
    Good article IC is yet another condition that comes under MUS isn’t it. I don’t get painful UTIs nowadays but I’ve had spells in the past of recurring UTIs and at some point it became pointless going to GP any more as the urine test always came back no infection but felt just the same as the earlier episodes when I’d been given antibiotics. So just painkillers drink water, cranberry juice and get on with it as far as possible. That was in the years when I considered myself healthy before recurrent laryngitis/flu that appears to signal the start unbeknownst to me and GPs of gradual onset of ME.

    From perspective of anti MUS advocacy seems like ME people/organisations have common cause with folks with IC if there are any organisations & groups to possibly work with on it.
  3. unicorn7

    unicorn7 Senior Member (Voting Rights)


    I hardly get uti’s anymore, but when my ME started I had about 20 uti’s in one year. Luckily, the tests came back possitive mostly and when they didn’t, I got antibiotics anyway and it always helped right away.

    They once wanted to fob me off as well with a “test is negative, it’s just an overactive bladder now”, but the symptoms were exactly the same as any other acute uti (horrible!) so I didn’t accept that nonsense. Antibiotics worked fine that time, like any other time.
    Simbindi, DokaGirl, Hutan and 5 others like this.
  4. Mithriel

    Mithriel Senior Member (Voting Rights)

    My friend had cerebral palsy which never held her back despite looking very disabled, yet interstitial cystitis floored her. Now they have discovered that urine contains lots of bacteria which do not grow on agar plates so all those "no growth found" results that meant IC wasn't real were just a flaw with the TEST!
  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

  6. DokaGirl

    DokaGirl Senior Member (Voting Rights)

    The list of those harmed by archaic testing, gender bias, and willfull blindness just keeps growing.

    I hope this article will be shared widely.

    I agree @NelliePledge, for advocacy, this group would be good to join with.
    roller*, It's M.E. Linda and Simbindi like this.
  7. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

    My year of reoccurring uti’s > to one infection which was resistant to the antibiotics > Sepsis > withdrawal of i/v a/b > increased infection (only a 4 day culture test showed the continuing infection) > back onto i/v a/b > ‘recovery’ but exhausted.

    Eventually after no improvements = M.E.diagnosis.
    DokaGirl and Trish like this.

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