UK cystitis sufferer

Posted , 7 users are following.

OK it's 2.54 am Ive been sat in agony on the loo for 3 hours but after suffering from cystitis since I was 12 years old I am used to this.

I have had several tests including ultrasounds, cytisccopys and also radiation testing, Mri scans but no answer have been found. The main concern was my kidneys but astill these only have mild scarring due to infections no further treatment or help is available.

I have given up going to the gp s everytime it is a differnt doctor who insists I wash more, pee after sex and take trimethoprim ( my uti results rarely come back positive).

The only remedy that seems to work for me is Azo but I do not see why as into the UK we need to be ignored by our medical system and purchase from amazon!

After suffering from this awful condition for so long I know why I am suffering tonight..almost 24 hours after having sex I am being punished for having a bit too much wine and forgetting to pee afterwards.

I am meant to be going vegas in April to get married but now I am thinking great no sex no alcohol and plenty of azo ...surely this is not the normal way to be living?

Does any one in the UK get taken seriously when reporting these issues to their gp?

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13 Replies

  • Posted

    Hey Kim,

    I'm in the same boat as you! Currently in hospital right now with IV antibiotics! But after one ultrasound which proved inclusive that's the end of their investigations!!

    I have emailed a urologist at Spires...I can't really afford to go private but I'd rather but broke and healthy! The NHS don't seem to care about the reasons behind them, just give you antibiotics (Im on my 4th lot!).

    They're letting me go home today - although my pee has been burning the past few times but they did a dip test which was normal thankfully and apperently my bloods and urine are normal so I'm hoping it's just thrush after all these antibiotics....

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    • Posted

      I hope you feel better soon. It is so frustrating as I have read articles that state antibiotics may not actually work as there is no infection with a bout of interstitial cystitis.

      Also I tried trimethoprim is a preventative so I was on a daily dose of these for 12 months but in all honestly it made no difference just the occasional thrush.

      I have thought too about going private but the Dr I saw last at the hospital also workedo at Nuffield and he had no answers at all for me.

      Have you received any medication apart from antibiotics?

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    • Posted

      Thank you! It is really fustrating!

      I have tried trimethoprim too and that doesn't work for me either!

      Yeah that's my worry about going private sad but they can do more tests private I have read about one with an X-ray and red dye! They also look at the pressure put on the bladder too.

      I haven't had anything but antibiotics no sad

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    • Posted

      I had a similar test done on the NHS but it seemed to be more of a check on my kidneys rather than the bladder.

      I had a cystoscoption a couple of years ago and although the first wee afterwards was excruciating it did seem to make a difference until recently.

      I suppose the only way to get help is to keep going to the gp and consultants (try private) as therever are so many sufferer's out there and not much help.

      I have Azo on order so hopefully after the next few days it will pass. Although these do mask signs of infection so I ensure I do ph stick testing every morning whilst on them.

      One thing I did find helped was having the contraceptive stick fitted as a result I have no periods. I tried several brands but all of them seemed to be a trigger, also avoiding all form of citrus fruits especially grapefruit helps.

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  • Posted

    Hi Kim I would recommend you look on the Cystitis and bladder foundation web site, there is lots of excellent advice on their forums.  Also contact them tomorrow during office hours and they will be able to advise re perhaps seeing someone privately and who to go to.  I think persoanily this is prob your best option.  Its going to cost initially but once you get seen they consultant can then advise your GP re further treatment.  Sounds like you may have a biofilm infection. Theres more about this on the bladder and cystits website.  I hope this helps.
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    • Posted

      Hi

      Thanks I am sure I have looked on there before but I have never heard of a biotherm before so I will check it out.

      I have seen consultants in the past urologists gynaecologist but none have any answers.

      Thanks

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  • Posted

    Hi Kim,

    I really feel for you as its such a painful and depressing illness to suffer with. I had cystitis the first time on my honeymoon and once I had my first baby it seemed to clear up thankfully. I am now 71 and suffered constant attacks for the past 4 years. I have antibiotic after antibiotic and the only one that works for me now is Ciprofloxacin. 

    I have also been put on a continual dose of antibiotics taking one a night which helps for so long and then it kicks off again. I follow all the tips the consultant gives me from wiping from front to back after a wee, and wiping myself with wet wipes after a motion. I am unable to take anything which contains cranberry as I am on blood thinners, but I have heard that they don't really clear the condition up anyway. Drinking plenty is very important especially after alcohol as it dehydrates you. Another remedy I've heard is very effective is called D Manose and you can get it from Health Food Stores, it might be worth you trying it. 

    I have been in and had my bladder stretched (cystoscomy) and scans on 3 occasions, and now I am being taught to self catheterise myself which I don't like, but if it helps to keep the infections at bay then it has to be done. In your case of course you don't really want to have to do that, especially if your getting married very soon. 

    I wish you all the best and if you do try the D Manose please let me know if it helps you. Never give up and insisting you see a urologist consultant as he will understand your situation. Go to your GP and tell him you want a second opinion to see a consultant, he has to listen to you and refer you as its your right.

    Best Wishes 

    Gill

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  • Posted

    Hi, is Azo licensed for use in the UK? I stopped taking my last lot of Trimethoprim not even 4 weeks ago and I feel as if Cystitis is about to rear it's ugly head yet again, this will be the 5th time since August last year, I am taking Probitotics,cranberry tablets, Vit C tablets to try and help keep it at bay but it doesn't look as if they have made any difference, getting fed up now, I will buy Azo to try, but if not licensed I may research it a bit more first.

    Thanks

    Phoebe.

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    • Posted

      Hi

      No itsnot as it can disguise syptoms of a kidney infection.

      I purchse them from amazon and if in doubt i do a ph test to check for infection

      They are a god send to me

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  • Posted

    Hello Kim and everyone else! 

    I am Hana from Czech republic.. sorry for my bad english in case smile. I have similar problems like you. It is really big issue for me as well. I feel good now for 2 month only because I took antibiotics again and then just stopped having sex. It is not a solution.. I know.. but I wanted to feel fine at least for some time. 

    I wanted to share with you a new approach that I am testing. E.i. I dont know if it will help or not, but I hope. The thing I am trying is kind of vaccination based on my own bacterias from the urine. It was recommended to me by an urologist. This way I should support my imunite system to fight against the bacteria more easily. I have also found out that we have some products based on this method in pharmacies - these usually include the most common bacterias. 

    Maybe you would like to try this as well.. try to ask some doctors at your in case. I have been suffering from these problems since 3 years and this is the first time I heard about this way.. A disadvantage of this approach is that you have to take these for several month till you feel some effects of it. 

    Good luck to all of us, girls! I wish you to get over it and think positivelly! I know it is hard but I try it all the time.. 

    Bests

    Hana

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  • Posted

    Hi, I'm 50 years old and have had recurrent cystitis since my late teens. Anything can trigger it, these days it is usually stress and forgetting to drink enough water. I hate having to take antibiotics. However - this weekend, I started to get symptoms on Friday night, I know them so well now and was planning to go to doc on Saturday. BUT - I had bought a bottle of Lugols iodine and was just about to start taking it on Friday night - for energy - and I noticed that my symptoms werent so bad. I googled iodine and cystitis and lo and behold, i read that iodine can cure bladder infections. So I doubled my dose, added with water, and for the first time in my life, my cystitis has cleared without antibiotics. I had all the symptoms, pain peeing, cloudy smelly urine, pain in my back, feeling tired and deyhydrated. It all went by teatime yesterday. It's a bloody miracle. So my advice to you is to get your hands on a bottle of lugols iodine asap...I am amazed.

     

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