Please help, UTI's taking over my life

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I have been suffering from UTI's since i got into a relationship 4 years ago. They started off 2/3 times a year which I could handle but then they started being once a month. I got put onto Trimethoprim once a night for 6 months which only started 4 weeks ago. I've never really had anxiety but since having UTI's that come on so quickly and having to wait days to get a doctors appointment and trying to balance it with working full time, it has really started to take over. I currently write this as I have now got a UTI since being on the low dose antibiotics for preventing. I am so upset and scared because I really thought these would stop them until I had to come off them in 6 months time. I have really lost all hope, I dont know what to do or what options to take now. The doctors dont know what to do, either does my urologist. Does anyone have any advice on how to prevent them, having no sex isnt an option and i do everything by the book wiping properly, peeing after sex etc. I have lost hope and fear that these will happen for the rest of my life and that i am going to become resistant to all antibiotics in the future, I am only 21.

Please help sad

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  • Posted

    I am in a similar, but worse, situation so I can commiserate.

    My first question would be to ask if you were infection free once you got on the nightly antibiotic.  Prophylatic low dose abx is unlikely to do much if there is still a small infection going on.  In my case, I think that is what is happening.

    If I were in your poition, I would try a different antibiotic.  I've never used Trimethoprim by itself, and I don't think you can even get that here in USA.  Everyone uses it in combo with the Sulfameth (Bactrim).  I'm on a daily low dose of Ceftin which is a Cephalosporin.  It keeps the infection at bay, but I still feel I have a slight one.  Same as you, my urologist at at a loss of what to do.

    Clearly in my case, it has taken over my life, and the anxiety and fear is just about unbearable.  I am not sexually active, so that is not a reason for my uti.  As bad as I feel, if I thought sex was causing my problems, I'd have no problems give it up.  Can you try abstaining from intercourse for a little while to see if that is the cause of your uti?  I don't want to sound vulgar, but maybe consider some alternatives for sexual satisfaction.

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    • Posted

      Hi thank you for replying. I was on antibiotics for 1 week for an infection which cleared up and then straight away went onto them for one night.

      I'm sorry to hear you are suffering also. Are you on long term antibiotics? Have you had a cystocopy or any other tests to see if you have any abnormalities? I have heard D-mannose helps prevent infections if you haven't already tried that, it's very hard to get a hold of here in the UK.

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    • Posted

      I have had a CT-Urogram that was negative.  I haven't had a cysto as my uro doesn't think it is needed.  I'm not sure about much, but I am pretty darn sure I have no abnormalities.  I think I have e-coli that is just adhered to the wall with biofilm or whatever.

      I guess I am on long term antibiotics, at least for the time being.  I have never gone more than 5 days without a uti returning.  I have been on antibiotics now for over 7 months, with just a few days off in between before the infection returns.  I tried 25 days of daily low dose and as soon as I went off them it returned.  So I am on low dose again now on day 16.  I still feel miserable and have all kinds of weird sensations in my urethra and bladder.

      Yes, I have hear all the hype about D-Mannose and good for those it helped.  I tried it once...the powder...and it make me sick at the stomach.  There hasn't been any research proving it works; only people that claim it did.  Perhaps it works on the more simple uti's.  I hardly belief that if an antibiotic can't cure the infection, then neither will D-Mannose.

      Actually, I purchased my D-Mannose from the UK, so don't know why you can't get it there.  It's also available on Amazon.

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    • Posted

      Yes I agree Marilee, it's easy to get D mannose here in UK, but I think it only works on the simple uti and not on what you and I have. It's very stressful tho isn't it.

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    • Posted

      Hi Rebekah,

      So many of us are suffering terrible with this, it's a real shame that the government doesn't look into helping us all!! We need to form a group and put pressure on for help and research.

      Best of luck. X

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  • Posted

    Also Rebecca, I am beginning to believe that Urologists are not much help for women with UTI.  They are great for treating kidney/bladder stones and doing the various tests like the cysto, but I think they are not much better than a PCP for UTI.  I have tried 3 different Urologists plus the PCP.  All they can do is the culture and prescribe abx.  If you read enough of the forums on UTI, you will see there are many women in a similar situation with no help.

    My uro gave me several prescriptions so that I can go to the lab and get a culture done as soon as I feel symptoms.  My uro also has a 'patient portal' where I can communicate with the practice and get a response quickly.

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  • Posted

    Hi Rebecca,

    Sorry to learn you're struggling so.  I am new to this group, but joined because after a hysterectomy I've had two UTI's in less than 6 months, but from different bacteria.  The first round, I was given macrobid and for the second round, I was given cipro.  Just finishing up with that.

    My method to cope is to try probiotics. I did some research on line and bought one that would re-colonize my urinary and gastrointestinal tracts after I took the macrobid.  

    Antibiotics kill all the good bacteria as well as the bad bacteria, so you need to repopulate the good bacteria.  I was taking a very highly touted probiotic, but it did not have two cultures that women particularly need, so I just found those on line and started taking them. I will also start taking cranberry capsules regularly.  I also am doing research on line into the origin and treatment of UTI's. It never hurts to be informed.  

    I understand that giving up sex isn't an option, but I suggest that before you and your parter have sex that you both shower. Sounds like a turn off, I know, but though you know that you keep yourself squeeky clean, you don't know that about your partner. 

    Best of luck to you! 

     

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    • Posted

      Hi Lynda thank you so much for your reply sorry to hear you are suffering also. Can i ask are you from the UK? If so, could you recommend the name of the probiotics you use as i think it is my last hope. Have you had some progress whilst using probiotics or is it too early to tell? I tried cranberry capsules but they didnt work however the may be more effective if i take them alongside a probiotic. Thanks.
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    • Posted

      Hi Rebecca,

      Am not from the UK, but I will send you a private message to let you know the brands and the strains I take.  I'm hopeful that if you can't find the brands, at least you will know what strains.

      Also, you need to make sure that the probiotic is entereic, that means that the bacterial cultures will be able to survive the harsh environment in your stomach and get on to your intestines. xx

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  • Posted

    Hi Rebecca,

    No one's asked you if your partner has been checked for a hidden infection.  Sounds gross, but if he's got something in there that he doesn't know about and you keep taking ABs to clear up your side of things it's not going to work, is it?!  If he loves you (and he should if going without isn't an option!), he'll do the smart thing and get checked at the same time as you.  THis isn't a joke and at the moment you're the one risking your health by taking endless courses of ABs.

    Warning to everyone, the flouroquinolone group e.g. Cipro are very strong Abs but may be prescribed if other ones like Trim don't sem to be working.  Please think very carefully before you take Cipro (or it's relatives). The FDA announced last year that they're restricting their use and the EMA (Europe) are reviewing them right now to see if the long lasting and permanent damage they can cause is worth the risk.  There are many other options but doctors usually wind up reaching for the Cipro as it's so strong it saves them looking for anything else.

    Good luck with your problem!

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  • Posted

    Hi there rebecca, 

    I understand that this was 11 months ago, but I hope you get this message.

    I am 23 years old and am currently suffering the same as you. t started off with 2/3 a year which is manageable. But since getting a new sexual partner early January I've had one a month (now its april). I do not believe it is the sex causing it, as it has still occurred after not having sex. 

    Despite telling my doctor I've had three already with three courses of cephalexin for each (which did get rid of it), they have given me Trimethoprim for this fourth one. 

    I have an appointment for an ultrasound and a blood test to be done soon. 

    I was just wondering where you are at now with your troubles? How you are going? Please let me know if you can. 

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  • Posted

    Hi Danielle.

    Sorry to hear you are struggling. I did 6 months antibiotics once a day and when I came off them I started d mannose which I think helped a lot. Mine are defiantly intercourse related and peeing after sex has stopped them. I wrote that post 11 months ago and have been infection free since. If you haven’t already request a cystocopy to see if anything underlying is going on in your bladder. Best of luck 

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  • Posted

    hi rebecca.same with me ,i tried all antibiotics ,until doctor said am resistant. this month am detoxing my body so that all the medication ,toxins and bacterias can come out. am so tired of using antibodies and they are not working. buy some chlorophyll and use it for 1 to 4 weeks. my friend used it last month and is perfect normal
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