UTI nightmare…need success stories

[Rochyella84]

I have had a chronic UTI for 2 months now. Short courses of Macrobid have helped but it comes back within 2 days each time. Trimethoprim didn’t help at all. I suspect a chronic/embedded infection and am waiting for an appointment with a specialist.

I am currently on a 2 week course of Macrobid and I have also started Hiprex and still symptomatic. My only symptom is urethral burning after weeing which can last several hours. I take d mannose regularly too.

On the chronic UTI Facebook group I’m on there are so many disheartening stories of people on long term antibiotics for years and still suffering. I keep thinking surely there must be people who need more than a weeks course but manage to shift this thing with something a little stronger and longer.

Im just feeling hopeless and need to hear something positive.

Ok, so I have a three day Macrobid course in my medicine cupboard from a panic a few months ago where it transpired I didn't need it. I'm just going to take it. I will prob throw up on all the school runs for the rest of the week now. 🤢 If this doesn't work I will try and see GP.

Good luck @jamoncrumpets . 3 days macrobid has always worked for my previous UTIs. This time no luck as it just flared back two days later. I don’t react too badly to this antibiotic though, I’ve been on it for a week now with minimal side effects.

@Rochyella84 Harley Street said to trial stopping hiprex. I expect I will discuss it with them in March. I had the uti for 6 weeks prior to being seen. I was lucky to get a cancellation.

Have you had your urine tested for ureaplasma, OP? It doesn’t show up on standard cultures and you need a PCR test on the urine. It’s a tricky bacteria to treat and can be the cause for your symptoms. Tests are available from online companies (don’t be put off by the link with STIs, ureaplasma is normally present in the urogenital tract but is only detected when there is an overgrowth.

Try D Mannose

@CannonCaboodle Ive heard of this but not been tested. Assume i could ask the urologist?

@Miss03852 have taken d mannose for over a decade. It isn’t sufficient to clear such a long term infection

I'm the same age as you and had the same issues. Had recurring uti every month for a year. I'd be prescribed antibiotics, and half the time my urine cultures came back negative even though I was in agony.
I 100% recommend hiprex. It has changed my life. In the last year I've had 1 uti which was cleared with a 3 day course of antibiotics.

D mannose didn't work for me either.
Now I religiously drink at least 1.5l of fluids and take 2 hiprex a day.

Also you are not meant to take the hiprex at the same time as antibiotics. They should only be used once the infection is treated and then it turns your urine acidic to keep the infection away.

I’m just getting over a uti which was awful as I have interstitial cystitis. It could be worth looking into that. Mine started because of a uti.
Had to have a urologist do a cystoscopy to diagnose it but the main symptom of it is the burning and urgency all the time without an actual infection.

I am sure that you've tried this and I can't say if it would help your current situation, but I suffered horrendously throughout my teens and twenties, peeing out blood and the jelly like lining of my bladder on numerous occasions, setting up scarring, just horrible recurrent bladder infections that would really get set in and wipe me out. I absolutely feel your misery!

I was prescribed bearberry tincture by a herbalist in Australia, which is also known as uva ursi, it has to be tincture, the tablets don't work. Nothing else helps, and since finding this, if I pee and shower after sex religiously, and slam some of this tincture back at any twinges, they will die down within the hour.

Touch wood I have only had a couple of attacks in the past couple of decades and they were my own fault due to being lazy and not peeing after sex. Definitely worth a try going forward once you get this one seen off by the specialist.

I've suffered from recurrent infections for 30 years. I had an infection that lasted for months once and nothing cleared it - tried all the usual antibiotics. I then saw a urologist who prescribed me Ofloxacin and it started to work with hours. It has since been my go-to antibiotic. Most GPs won't prescribe it without exhausting all others first or getting a letter from the urologist. It can have some nasty side effects but I have to take that chance as it's the only thing that's ever worked for me since. I'm also on the UTI Facebook group and nobody else has ever mentioned it which makes me think doctors are reluctant to prescribe it.

I found the antibiotics Selexit and Monural helped. I take D-mannose as a preventative.

I am 41 and have been suffering from uti on and off for 9 months. It’s been horrendous. On and off antibiotics for all this time. Saw a urologist and took a long course of trimethoprim for a month which kept things at bay but symptoms always come back. Oestrogen gel also helped a bit but not enough.
many many urine samples sent off - only one did they culture anything and that was because my urologist sent it off for ‘extended growth’. Finally they found the bacteria and found it was resistant to certain antibiotics.
mental health also suffers. Holidays are particularly difficult as travelling seems to always trigger my symptoms. Then I freak out about seeking health care when abroad.

I think it’s time for a cystocopy and urethral dilation.
can I ask those who have had it how bad it is ? Is the recovery ok?

Many UTI specialists don't believe in IC; they believe it is an embedded, hidden infection that fails to show up on the not-fit-for-purpose tests we have. I was told once that I probably had IC, by my GP, because I had symptoms but no infection (according to their tests). Eventually, once I'd got the right antibiotics, it cleared up. I still have recurrent infections though.

Reading with interest as I too have reoccurring UTIs at the moment. On 3rd course of antibiotics in a month. Last night was agony but today no symptoms!
I'm going through medical menopause due to cancer and as my cancer is oestrogen fed I will not ever be allowed any form of HRT or oestrogen gel.

@Sunnysideup999 look at the embedded/chronic uti support group on Facebook. I’ve got a long way to go but I have learnt a lot there. There is also a great podcast on the Dr Louise Newson podcast with dr Chris Harding, he talks about how infection can absolutely become embedded. Personally I am going down the route of looking into treating with a longer course of abx rather than invasive procedures like cystoscopy for now. I really feel your pain though and happy to chat any time as we are both going through it.

@Oucht Ive heard the same as the poster above regarding IC being more likely embedded infection which isn’t picked up by (our totally crap) standard testing. The Live UTI free website has a lot of info on this. It seems there are two camps, lots of ladies in the fb group I mention above previously diagnosed with IC who now are symptom free after long course antibiotics. And some who believe in the IC diagnosis and dietary changes etc. I’m not prepared to consider it until I’ve seen a chronic uti specialist and tried long term treatment. I don’t like the idea of it but it’s better than living in pain.

The standard nhs urine testing only picks up certain bacteria. This is also the case when they send your sample off to the lab for culturing. I’ve been suffering for ages with burning, stinging and frequent painful urination. Three day courses of Macrobid or Trimethoprim did nothing. They are the standard “go to” antibiotics that drs dish out for uncomplicated uti. My gp even sent me to a gynaecologist so he could have a look and he said all normal. I eventually paid for a private urine culture that tests for 4,000 different bacteria. The results show that one of these that I have would NEVER have been picked up by standard nhs testing so I would have kept having negative results and the infection would have never been treated with the correct antibiotics

It also showed I have bacterial vaginitis which is giving me the utis

Which private urine test was it? Hope you don’t mind me asking.
do you have a link?
glad they found the cause for you and identified the bacteria

How are you doing @Rochyella84 ?

It was done by Regenerus Labs. It’s the Urokey test and it costs £280. They send you a pot to wee in and full instructions of how to return. It’s returned by UPS and in 48 hours they email you the results and offer you the service of their pharmacy which is Dickson chemist. The pharmacist will call you to discuss any bacteria that was found, how to treat and then send out by courier the correct antibiotic (s). I started my course (s) yesterday of two different types and I feel better already. Google Regenerus Labs x

You are so lovely to ask.
I ended up having a test done with focus labs and they found low levels of enterococcus which was resistant to everything except Macrobid and amoxicillin.
I went privately and am half way through a month long course of Macrobid and also on Hiprex twice daily. I also came off the pill. Touch wood things are settled….remains to be seen what happens when I come off the Macrobid.
I also take D mannose twice daily and a vaginal/urinary specific probiotic.

I used to get UTIs all the bloody time. I still do occasionally but for me stopping shaving really helped for some reason.

Sorry to resurrect an old thread, but as the name suggests I’m at my wits end!

I could’ve written OPs original post and have just started a 28day course of trimethoprim (course 5 of antibiotics). GP has now referred to urology as she suspects residual scarring and inflammation in my bladder. Does anyone have experience of treatment options for this? Unfortunately can’t afford to go privately. Trimethoprim is keeping on top of it but still have the horrible burning after a wee!