UTI not going away . Its crippling me !any help ?

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i m 37 female . i have a history of recurrent uti's since my childhood . 1 everymonth .

last 3-5 years has been a relief with nitrofurantoin prophylaxis . i only had very few attcks that were easily sorted out by a single antibiotic course .

2 months ago i developed this uti after sex . since then i have had 5 days trimethoprim , 1 week augmentin , 5 days nitrofurantoin

courses . nothing helped . i went to urologist he put me on nitrofurantoin 100mg twice a day for a month . its my 10th day on antibiotic and nothing has changed . i have burning / inflamation / raw sensation in my urethera . if it goes up i can feel irritation lower in my bladder too . i cant wear my regular trousers / jeans as it flares up my burning . i am working from home last 3 weeks . i went to work last week for a day and came back home with hightened symptoms . sitting in the office long hours caused it . although i wore a loose trouser but i think even wearing a panty gives irritation . i burst into tears when i got back home . my life is shattering into pieces . i cant operate at all . and it is hugely affecting my relationship . i am so depressed . to a point where i have started to hate myself . and i question myself will it be ever getting better ?

what if i have got an antibiotic resistant bacteria?

i have urologist appointment in two weeks for a followup . my urine test all came negative . my dr will share the culture report with me in the next appointment . mostly my culture shows no growth . but i always get instant relief from antibiotic that means the tests miss the infectiom and are not 100% reliable . but my urologist luckily understands this . and even if the test are negative . he gives importantce to the patient symptoms .

He said if it doesnt get better he will do cystoscopy mri ultrasound and all sort of tests . which i have done in past . and they all came negative . which i kind of know will be fine this time too . every person knows their body.

i can tell its a uti infection which is very persistant and showing resistant to antibiotics . i might need to ask my dr to put me on wide spectrum and heavy dose antibiotic that can help fight the bacteria within the biofilm .

Please if any of you have similar story , please share and please advise if you have any ideas whats wrong with me and how can i get rid of it .its been two months of continous agony . i cant take it anymore.


0 likes, 22 replies

22 Replies

  • Posted

    If you take a culture when your urine is diluted, it may show no growth. Do you use the uti test strips? You should. That way you can test yourself. If you find that one specimen shows positive on the stick you can take that urine to the doctor for culture. I have scripts written so I can go directly to the lab with my urine with seeing a doctor.

    My case was not like yours because I did not have a long history of UTI. What I had was a UTI that was 'persistant'. Soon as antibiotics were stopped, it came back. The only way I got rid of it was to take a broad spectrum antibiotic for a couple months. Most doctors won't prescribe that way, but I went ahead and self medicated. It worked for me, and I've been uti free for two years.

    • Posted

      Thankyou so much for your reply .

      i do have test strips . but unfortunately i was never able to catch any thing . just traces of blood i remember one time . but i think its a good idea to keep checking . and take a pic if something shows up to show it to the Dr .

      can you please tell me which antibiotic you used and the dose ? so i can discuss it with my dr in next appointment . also please can you tell me when did you start seeing the difference in symptoms ?

      its my 10th day on nitrofurantoin and no difference.

      i m thinking to ask for ciprofloxacin long term course . few people in other threads mention that thats the only thing that helped with thier persistent uti when other drugs failed .

      thanks again for your reply . its given me a hope that right antibiotic for right amount of time could get rid of this .

    • Posted

      Have you thought about fosfomycin? Probably less risky than cipro and is still effective at treating both complicated and uncomplicated UTIs apparently, especially stubborn e. coli types where other antibiotics fail.

    • Posted

      I used Cefuroxime (brand name Ceftin). It's in the Cephalosporin family of antibotics. I took 500mg a day for 10 days (250mg twice) and then stayed on the 250mg per day for a couple months.

      Taking a broad spectrum antibiotic is of course not a great idea due to antibiotic resistance developing. I personally would not be taking a Cipro or any antibiotic in that family. The side effects are way too risky. Save that one for a truly serious situation.

      Nitrofuratoin, Bactrim were pretty worthless for me. In fact, I think the problem started with taking those two antibiotics and it didn't kill all the bacteria and the bacteria keep multiplying and getting stronger and more resistant.

      With my UTI's the test strips were usually +3 on leukocytes and blood. Rarely did I have nitrates positive. On all antibiotics, my symptoms were relieved in less than 3 days. However, only one two occasions did I have symptoms that were painful and that was burning like fire on urination. Otherwise, it was just urinary frequency and the cloudiness and color of the urine was a dead giveaway.

      The other thing with me is I am in menopause. That I think contribution to the suseptibility for UTI.I started estrogen cream and that probably helped ward off UTI. I am also not sexually active.

    • Posted

      I'm a male so besides obvious differences, you are no doubt aware that male UTIs are usually related to some sort of disease like an atonic bladder that I suffer with. Thankfully I've been free of UTIs for almost 3 years now. Prior to that I experienced a year or more of almost continuous e. coli infections, which became resistant to all of the common antibiotics a GP in the UK can prescribe scaringly fast! The last common antibiotic used was Nitrofurantoin, which did not clear the infections, but did subdue them while I was taking it. Thankfully my UTIs eventually became asymptomatic for whatever reason so I decided to stop taking antibiotics and eventually even my dip tests became clear and long may it continue........................

      Anyway, this is of little help to you, so I can but wish you the very best of luck with getting a very long respite from those UTIs.

    • Posted

      A urologist told me that notrofuantoin is not to be prescribed for males but is OK for the ladies was his exact words.

      For male prostatitis the first line antibiotic according to Mimms ( the chemist's and doctor's 'bible') the prescribing hand reference book which is now on the net states that Ciprofloxacin ay full strength should be taken for a month if the patient has prostatitis infection by bacteria.

      Some contributors would love to see that antibiotic banned because as one 'contributer' on here said = it kills everything! This is of course because Cipro does not treat everyone 'kindly'. However many have been grateful of Cipro because that treatment has indeed saved them from nasty bacterial infections that was ruining their existence in every respect.

      It seems very unacceptable that modern medical science cannot identify what bacteria or bacterias are infecting us. What about the 'modern'

      polymerase chain reaction test? Why is that test not used more often? Is the lack of it's regular use down to financial reasons? It is now used apparently to identify bacteria other tests fail to identify.

      Perhaps Sara would be quite within her 'rights' to put pen to paper and ask her doctors =Am I getting the tests on the problem to resolve it. Have the tests so far not been adequate to get to the problem? According to my experience and many others mistakes can be made and the patient must lay it on the line that a resolution to health problems must be resolved if at all possible.

    • Posted

      Hi Micklemus

      Thanks for your reply. While googling i came across PCR Test services . i m pretty sure i can order a kit and get it done by myself . Doctors here doesnt even mention any such thing exist .

      I am going to call my insurance company if they cover it or not? even if not i m happy to pay for it myself . i want to get rid of this hideous infection no matter what it cost.


    • Posted

      Interesting what you say about nitro not being suitable for males. Is that just for prostatitis or other conditions as well? My infection issues were not due to prostatitis, but probably down to a combination of things such as self catheterising, bladder stones which were removed on two occasions, taking immuno suppressants for my rheumatoid arthritis and probably slight urine retention due to my atonic bladder which is obviously the core of my problem. It's no wonder I was having frequent UTIs having to contend with that little lot! Can't say I was very happy with my urologist with the benefit of hindsight, who has thankfully moved on and been replaced.

      Having the bladder stones removed and changing to a relatively mild non immune suppressing med must be why I have been UTI free for nearly 3 years.

    • Posted

      I couldn't see a private PCR test when I ought to have had one! I had a private Quantiferon gold test for Tuberculosis antibodies which was positive. My infection was ongoing for decades . No doctor and even senior ones at that ever consulted my medical history. Although a patient should not have to tell the professionals about one's medical history but is confirmed that is essential due to the distinct possibility the same could happen to others as most definitely happened to me. This seems unbelievable but I have the 'evidence ' in writing.

      Would it be possible to get the NHS to do what they should do?

      I made an effort to resolve what I was infected with but was challenged by a urologist who said I could not prove I had had an infection. He was wrong.

      It seems that because almost everyone has urinary infections most are deemed to be 'self limiting'. that may well be the case in most instances but it is a sorry state that doctors in some cases just do not listen to the 'sufferer'. Due to that I would always advise every single word is in black and white because if necessary words on paper can be referred to....... face to face can be brushed off at an instant as well as on the phone!

    • Posted

      It's nice when you achieve the situation whereby you are OK. I am surprised when they say there is no infection evident when the patient knows damn well there is one! There are more in depth tests as I said which is the PCR test but will they use it?

      I saw a chap in Bulgaria I think where he advocated his wife had a PCR test which revealed she had urinary TB. Her urine was tested and proved positive. It is unfortunate that some bacteria are very hard to isolate and confirm. Each and every one of us has varying resistance to bugs. I have wondered long ago, is a humans resistance same as their fingerprints ,unique?

      A special very senior nurse who seemed very experienced and knowledgeable said - don't get me going about urologists! She said ,my dad had a catheter in place for three months he did not need! It really is let's say educational when one hears that. Could do better,how on earth can that happen?

    • Posted

      Thanks Micklemus . So i just right down in a piece of paper the tests i would like my urologist to run? i would do it in my next appointment .

      i am trying to do as much homework as possible before seeing my dr .

      it is sad that uti infections are taken so lightly by the doctors . and worse is when the urine test comes negative . and they just brush you off .

      i cant forget the look my GP gave me when i went to him 3rd time saying my symptoms are not improving . He said i have treated you with couple of antibiotic courses . and your test says you dont even have an infection . he asked me " how can i help now ?" .seriously ! you are the dr . you should know how can you help me and what the next step should be ?

      anyway i told him i am going to the urologist privately and if he can write me a referal letter that would be great ( luckily i have insurance from my work ) . i came out of the gp practice in tears .

      People who hasnt suffered from uti just simply dont understand how excruciating the pain is . its like having your private part on fire .

    • Posted

      I couldn't agree more about doctors not listening to their patients, hence the negative comment I made about my urologist. It remains to be seen what my new one is like. I appreciate that most doctors are very busy and perhaps my expectations were too high, but that's no excuse for disregarding what a patient, who knows their own body, has to say.

      I knew next to nothing back when I was having frequent UTIs and relied on my doctors to have my best interests at heart. It was only due to me suggesting that I try stopping antibiotics because I was symptom free, which I'd previously informed them of, that anything happened. They just seemed to rely on my urine dip and lab tests that showed high levels of bacteria, e .coli I presume as that was the bug causing my problems, and carried on filling me up with nitrofurentoin which I eventually refused to take. This was after I'd become antibiotic resistant and been hospitalised with two serious UTI related infections. One needing surgery.

      I found out I had my first bladder stone completely by chance approx 4 months after it was detected by a routine ultra sound scan. It was my own fault in a way as I never phoned for the result, but I was naive back then and mistakenly believed that I would be informed if anything of concern was found as many people do. I certainly know different now!

    • Posted

      edit... correction, it was just the infection requiring surgery . The other serious infection happened some time after I stopped the nitrofurentoin.

      Well, I don't want to give urologists a bad name do I! 😉

    • Posted

      Tony, I was like you, not knowing anything about UTI and trusting doctors. In fact, I had been very healthy until the UTI, so I was clueless about most health ailments.

      Once I got the UTI, starting researching and researching. It was then that I was able to determine just how little some doctors knew about UTI.

      The way it seems to work here in USA is that you got to your Primary Care Doctor who prescribes antibotics a few times. If that doesn't cure the UTI, they send you to a Urologist.

      The reason they send you to a Urologist is because they assume there is a reason for the UTI, such as stones, constriction, retention, and that sort of thing. I think generally there is none of those that is the reason in women.

      It is better in my opinion to see an Infectious Disease doctor instead of a Urologist. Even then, UTI doesn't seem to be a speciality of any doctor. All they know or care to do is prescribe antibiotics.

      Tony, what I did find out from research is that it is the opinion of most 'experts' that asymtomatic UTI in older patients should not be treated with antibiotics.I have a feeling that if I were to do a culture now (or even a dip stick) that I would have some bacteria. I don't want to know, so I don't test. I also wonder just how many people do have bacteria in their culture but never know because doctors generally do not do cultures on people without symptoms. What I am saying is that I think they now know that contrary to previous beliefs, urine is not sterile.

    • Posted

      I don't know if the urologist was referring to any thing other than prostatitis but one of the lucky male GPs at our surgery said he'd give me some nitrofurantoin to 'tide me over'! I asked the urologist is that antibiotic contra indicated for prostate problems he said no it's ok for the ladies........

      However I would expect that the labs can identify exactly what the bacteria is but the who thing seems hit and miss to me.

      Is it any wonder that incorrect and too short a term of antibiotics are often prescribed! The there was the TV advert telling us that we were to blame for the resistance bugs have to infection....... On most occasions I should thing they should look to their own mistakes and cut out the guesswork and know how to test for and identify exactly what the infection is before telling us not to take antibiotics.

    • Posted

      I think that's pretty similar to the procedure here in the UK. It was different with me as I left things far too long before going to see my GP with a fever and a very bad UTI. I was admitted to hospital and placed on IVAs for a few days then discharged when they 'thought' it had cleared. Within a week I was back in hospital, but this time along with receiving another course of IVAs, I was examined and scanned. The docs said there was a problem with one of my kidney tubes and referred me to a urologist who told me my bladder was not performing as it should and I was retaining a lot of water so would have to self catheterise from now on, which came as quite a shock! It took quite a while to get used to doing that!

      An atonic bladder and an autoimmune condition do not go well together and I found myself in a vicious circle of terrible debilitating rheumatoid arthritis flares, including septic arthritis and frequent UTIs. My rheumatologist wrote a letter to my urologist asking his opinion about the treatment she was considering for me. His reply was one of disinterest with words to the effect of do whatever you see fit. My rheumatologist was not very happy with his response shall we say.

      I had a very good rheumatologist who has sadly retired. Because I was having frequent UTIs and more serious infections, she referred me to an immunologist for him to run some tests and to hear his thoughts about a new type of drug she was thinking about giving me. I've been on a low dose of the new drug for almost a year now with just the odd stoppage due to a sinus infection and while a leg ulcer was treated, and though I'm far from well, I feel and look better than I have for ages.

      That's really interesting what the experts are saying about not treating older asymptomatic patients with antibiotics. My decision to stop antibiotics when I was asymptomatic must surely make me a bit of an expert then! 😃 lol

    • Posted

      I'm in the UK too. I got interested in all this when my husband had constant UTIs caused by his indwelling catheter (he's got MS). It seemed that if I sent in a sample, nitrofurantoin or trimethoprim was prescribed (first line), if that didn't clear it then Cephalexin (a 2nd line cephalosporin) and if there was still trouble they sent the big guns - Cipro (3rd line).

      Whether or not they cultured the sample or just did the dipstick I don't know. This was 2013 and, after urosepsis nearly finished him off my main concern was to work out out to prevent the repeated infections (which I did once I'd found I could get the dual balloon catheter from the USA, although I had to train to use it as no one in the UK could touch it!).

      He's been infection 'free' for the 4 years that we've been using it BUT he also takes 100mg Trimethoprim every night as a prophylactic ("just in case"). This doesn't seem to bother him at all and he balances it with a probiotic every morning but I know this wouldn't suit everyone.

      I also do a dipstick test every day. I get the strips online and there's 100 to a bottle which have to be used within 90 days so, although I don't need to keep testing, I do. The strength of the leukocyte presence varies from day to day - never at the highest (where I would begin to suspect an infection) but rarely clear. I also test my own urine now and then (for no reason, just because I can!) I have no symptoms at all but I do often show leukocyte activity. I'm saying this because my experience suggests that it's perhaps quite normal to show leukocytes. I never show any nitrates although my husband does occasionally.

      And, yes, I'm the person who said Cipro kills everything! (see Mickelmus's post 3 days ago). My husband took it 3 times and the first two times nothing happened except he got better (so we never though anything of it). The third time he was quiet the first day, didn't move at all the second day and begged me not to give him any more the third day. I was totally perplexed - this had never happened before. He was bedridden anyway although he could move in the bed, but there he was, all scrunched up and telling me he was in agony all over. His words were he felt as if he was lying on knife blades.

      I went off for a quiet search and, after the 'usual' sites reassured me that there could be Achilles pain I decided to look for 'problems with Cipro'. This brought up a whole new world - you can get a flavour of it by going to this thread started by the moderator https://patient.info/forums/discuss/fluoroquinolone-toxicity-syndrome-427305

      I say it kills everything by which I mean it damages your cells along with its target bacterial cells. It's not fussy but it isn't instant, everyone has their own threshold so most people can take several courses - and it does save lives, it possibly saved my husband's. Once you've reached your threshold, though, that's it - agony is just the beginning. Look at the link to see more of what I mean. When I say it's not fussy, it will damage liver, heart and kidney cells along with the linings of your nerves and blood vessels. Your tendons take a big hit but it affects everything with collagen - which is pretty much most of you.

      Some people recover (but will always be in danger if they take it or any other fluoroquinolone again). Many people don't recover fully, some hardly at all (if at all). My husband is still bedridden (from the MS) so it's impossible for me to say whether he's f recovered or not.

      I don't call for it to be banned, I know it has saved lives and many on here find it's the only thing that helps them with whatever problem they have - my brother-in-law took it regularly for relief from his Crohn's and said he never had any pains from it. ( He passed away 2 years ago).

      I write about it as many people have never heard of the problems despite several black box warnings issued in the US and new Restrictions (DSUs) issued in last March in the UK. Doctors are not truly aware of the dangers either but the list of side effects is very long, as is the list of instances where you're not supposed to be prescribed it. I often hear of it being prescribed wrongly so I do my best to warn people to take care.

    • Posted

      I'm sorry to near your husband has MS, but he is indeed fortunate to to have a wife as caring and insightful as you...not sure that's the correct term for what I'm trying to put over but hope you get my drift. That must have been a heck of a scare for you both when he had that bad reaction to cipro! Plus the previous close shave with urosepsis! It's no wonder you've done your homework.

      I had urosepsis 3 years ago, which was my last infection to date, thankfully, but I managed to catch it early as I'd been told to bypass my GP at the first sign of a UTI and go straight to hospital. The other and more scary serious infection I had was a year earlier when I had septic arthritis in my hip (ouch!) which required two bouts of surgery, 6 days on IVAs, a 10 day stay in hospital, and a goodie bag with 4 weeks of strong oral antibiotics to take home....not a happy time goodie bag or not! 😉 Interestingly the orthopaedic consultant at the time blamed a powerful immune suppressant I was taking to control my rheumatoid arthritis, saying he believed it made it easy for a bug from a recent UTI to enter my bloodstream and told me not to take it again. I've since had to tread very carefully with medication for my RA but seem to have finally found one that's suits me called Baricitinib. I can only take a low dose so it's not as effective as it could be but I can't complain too much as it does make life easier.

      I can't remember all the antibiotics my GP prescribed back when I was having a spate of UTIs, well I am a bloke! 😃 I think Cephalexin was one, but pretty sure I was never prescribed Cipro, which I'm mighty glad of after seeing your post!....perhaps my GP had more sense?

    • Posted

      Hopefully for your sake he did! Some doctors are aware of the dangers while most say it's a very useful drug. These are not the same doctors who the patients go to when their FQ symptoms start a while later, of course.

      RA and MS are probably related. It's all autoimmune stuff. Something we eat has triggered this response but we keep eating it. If only we knew what it was! We've tried eliminating the obvious things but it didn't seem to help and he's bored with all that now.

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