Cystitis everyday for over two weeks..advice?

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Okay, so my cystitis is an on going problem i've had all year. It's non bacterial so cant be treated with anti biotics. i've been taking cystopurin (and other brands) sachets EVERY DAY and i'm worried to take more in case I a) get immune and B) they're starting to make me feel sick because i've been drinking them every day.

It's not a bacterial infection, so its not a Urinary Tract Infection.

I have my suspisions about BV, i've started using BV gel but so far, no major improvements.

Does anyone know anything about Uthethritis or Urethral Syndrome? I'm suspecting those now too.

My doctors haven't been helpful, i've had numerous hospital and GP appointments but they haven't fully looked in to me even though i've been going almost every week for a year.

Does anyone have any advice on how to cope or what it might be? Or even anyone gone through something similar?

P.S 

I drink at least 5 pints of water a day

Cranberry juice and suppliments don't work for me

I keep up personal hygiene

Wear cotton underwear

Don't use any soaps or anything 'down there'

Don't drink alcohol anymore

Avoid acidic foods and drink

(Just in case people ask if i've tried these!)

Thanks so much in advance!

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6 Replies

  • Posted

    Have you had a cystascope, which is usually the best way to see if there is a problem with the bladder or urethra, such as inflammation. l think you said your gp said its not likely intersticial cystitus, due to your age or health probs, but people of all age groups can get intersticial cystitus, and l dont understand how other health probs would rule it out, as people with ic get all manner of other health probs, including anxiety,

    Is it mainly frequency or pain, soreness, burning, you can get all that with i c, and thrush fairly common along with it.  There is more info on c.o.b site about ic and different bladder urethra probs.  If youve not had cystascope ask your gp to refer you for one, l know its not easy with some gps to get a referral  for manner of consultants tests, but keep at them.  Good luck 

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  • Posted

    Hi Becky, l agree with Lynne it sounds like ic to me , its known now as painful bladder syndrome which l think describes it perfectly. I have been treated for cystitis for 10 years l have swallowed loads of antibiotics week afyer week and only 1month ago after having a sample tested in the hospital they did mot find any bacteria and came to the conclusion that l get cystitis very rarely and have pbs all the time . I am having bladder installations 12 weekly sessions and have been given a powerful painkiller and a antiacid tablet both to be taken every day . I had a cystoscopy done and it was not conclusive but its good to have one to eliminate other possible problems. It was the blood test that proved it. You can get testing kits on amazon l found these helpful l was able to see there were no nitrates which usually means no infection if your water bringd this result thats the sample to take to the docter if you do it and cannot get a quick appointment it will keep for 24 hrs at least in the fridge.l have also radically changed my diet , lots of help on line about this , a good bonus is l have lost a lot of weight . I do feel a lot better the test will come when the installations are finished. Dont be afraid of the urology dept they make a very sensitive problem a lot easier by there brilliant care they are so nice to you and try to spare your blushes. I hope my story helps , Take care x
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    • Posted

      Hi Winifred, l had frequency pain and soreness heat, though not when passing, just most of other times, and blood in urine at times, still took years to get diagnosis, due to gp incompatence in not referring me, once he did the urologist did a scope and diagnosed it, the meds he gave me reduced symptoms a lot, maybe 90 percent, just the odd niggles time to time.  in last year or two its been more problematic, maybe due to age, bit sore more often, and l can tell when theres traces of blood in urine by colour, and soreness before. l did have a cystascope several weeks ago, the first was when asleep, this last time chose to be awake, and despite thinking l,d lost all my modesty long since, l did worry, about pain embarresment, but it was fine, no pain discomfort, and not embarressed only took 5min, the worst part was the anaschetic gel, freezing shock, but they were all very good, and made it easy. They said my urethra was a bit narrow, though l,ve no problem with passing a decent flow and amount, cystiat was mentioned in passing, l guess installations, something lve never had, l said l think about it and see how l went on, the urologist wrote to me saying just get in touch if needed. So l,m interested to see how you go on when your installations are over with, hope youll post with results and know it will take time to improve. Best wishes to you and all with bladder probs, 
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    • Posted

      Hi Lynne, l will post again in a few weeks after seeing how l go. You mention soreness and a narrow urethra have you had the skin in that area checked out l have Lichen Scleroris down there and it can cause the urethra to narrow and other parts to fuse together l am on the forum for that as well and a lot of women seem to have the two problems plus a lot of us have thyroid problems and think the whole thing is connected to the immune system and forms a vicious circle . The whole lot need to be treated to get any relief. Its not easy because the systems are all similar . Stress needs to be avoided as that activates all these problems ( not easy to avoid stress, its a bit like a doc telling a mum of 3 children to go home and rest ! ) I do feel better now l have changed my diet , just look up pbs on the internet there are is lots of imgormation about diet. Hopefully a day will come when there is a cure , in the meantime we must just try to help ourselves !! Take care , best wishes x
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    • Posted

      Hi Winifred, Thanks for info, no ive not had l.s. checked, never heard of it till you mentioned it, sometimes seems youve to come on here and learn from other posters and reading up on things. It is immune probs for many, quite a lot of women with ic have sjorgens, myalgia, and as with me skin probs common, touch of eczma, psoriasis, and allergies, lve had allergic rhinitus many years, l guess it was the first of my allergy probs, Over the last year or over lve had different symptoms, general aches and pain on top of pelvic ones due to ic, tiredness, fatigue at times, sleepy, sore eyes, thirst, usual tests and probs re diabetes etc ruled out, it doesnt do to get anything unusual, more so immune conditions.  l have changed my diet, as also had chronic debilitating nausea for several months, scope showed bit of gastritus, omprazole and diet change, no processed or tins now, plain meal evening.

      Anyway thats settled quite well  now, but stick to new diet supplaments.

      l recall an old friend saying to me `well your just greedy, when l told her of latest, she wasnt being nasty, just a bit cheeky tongue in cheek, it does seem like that at times to me,  But as you know once you get one allergy immune prob you get others, near everyone does it seems. My sons are adults and live away, though still worry if theyve probs, but at home just me and pets, its often the health probs that cause the stress also, and money of course, lack of it, but others worse off than me, There was no net when l first started with ic symptoms, so no idea what was causing it, relied on gps, and theyd no idea, misdiagnosis, bad experiences, l might have found out years earlier if there,d been a site like this, its good for info and advice. l think l,ll refer gps to it!, let us know how affective instills are, best wishes.

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  • Posted

    Cranberry juice may be good for infections of the bladder but for most people it makes ic worse as it irritates the lining, I made the same mistake, it sucked rolleyes
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