Help - UTI not responding to antibiotics

[Rightyouarelove]

Just writing for advice and a hand hold please. I’m late 30s, active mum of two who works full time. No major health issues.

About 3 weeks ago I started with classic UTI symptoms (I had more sex over Christmas so I guessed an unfortunate transfer of e-Coli). Went to docs and had 3 days of Nitrofurantoin followed by 5 days of Trimethoprim. I’m drinking loads, using cystitis sachets, D-Mannose and absolutely nothing is touch it. My symptoms are constant aching in my bladder, awareness / hotness in my urethra - going to bed at night it feels like I constantly need the loo (my bladder feels heavy). It’s unbearable (and I’m fairly tolerant of discomfort). I feel I have gone from healthy and having a life and future, to severely debilitated and depressed. To the extent that I don’t think I can live like this. I’m trying not to be dramatic but it is truly awful.

Can anyone offer the following;

• Specialists in UTI ideally who are in the north of England (Prof Marlone-Lee has sadly been diagnosed with cancer and I don’t think is practicing and Mr Ased Ali isn’t practicing privately anymore) - is there any one else as well respected (happy to pay to see someone privately)?

• A positive outcome from something like this. I’ve had UTIs before but not recurrently and they usually respond to antibiotics. Why is this one not responding.

I feel genuinely desperate. Thanks for your support.

My daughter has dealt with ab resistant infections.

Speak to urology about bladder washouts.

She was prescribed a sterile saline solution that was used to flush the bladder

Sorry you’re dealing with this. I live in fear of ab resistance while most are still quietly unaware what a fine line we are walking

I am so grateful for modern evidence based medicine

This may be a bit left field. But there are oestrogen receptors in the bladder and although you are young it maybe something that would help?

What you described is VERY common in peri menopause and things like vaginal oestrogen, such as Vagifem can be a massive help.

I was in my mid 40s with no menopause symptoms at all but bladder issues that genuinely made me feel suicidal. Vagifem was the answer.

I had the most excruciating pain and no obvious trace of uti. Dr gave me vagifem and it's made such a difference - really alleviated symptoms. I'm also now on HRT patches. Google the symptoms of peri menopause and see if anything there rings true for you - it's not just hot flushes. Also ask for a referral to a women's physiotherapist

HerenaHarridan. I had 2 years of bladder installations and all they did was cause more irritation from regular catheter insertion and removal. Professor Malone-Lee said the science behind this treatment is flawed and that there is no pathophysiological reason why they should work. There is an analysis of 36 randomised controlled trials evaluating the use of bladder installations on 1,822 patients which showed they can have a placebo affect but nothing in terms of a cure of their chronic uti.

Longer use of first generation antibiotics such as cefalelex without chopping and changing, so far is indicating no problems with antibiotic resistance and very low risk of c.diff. I’m no medic but just passing on what the Professors 30+ years of research of UTI has shown. Which I hope is right

@MeatPieWoman

This may be a bit left field. But there are oestrogen receptors in the bladder and although you are young it maybe something that would help?

What you described is VERY common in peri menopause and things like vaginal oestrogen, such as Vagifem can be a massive help.

I was in my mid 40s with no menopause symptoms at all but bladder issues that genuinely made me feel suicidal. Vagifem was the answer.

Yes, the LUTS clinic are just starting me in vaginal oestrogen.

OP I would like to thank you for starting this thread. I'm not in quite such an acute position but very similar. Please pm me if you would like a buddy through this as I'll be attacking it too using the info given here.

I'm in Northern Ireland. Professor Malone Lee's team would be my first port of call but they only offer in person visits initially. With apologies to you OP for jumping on your thread, can anyone recommend someone similar who I can investigate to see if they'll consult over Zoom or is NI/Ireland based?

@MeatPieWoman

This may be a bit left field. But there are oestrogen receptors in the bladder and although you are young it maybe something that would help?

What you described is VERY common in peri menopause and things like vaginal oestrogen, such as Vagifem can be a massive help.

I was in my mid 40s with no menopause symptoms at all but bladder issues that genuinely made me feel suicidal. Vagifem was the answer.

Yes this is definitely worth mentioning.

I use Ovestin cream and it’s made a big difference to my bladder issues (I commented upthread, I’ve been under a urologist since I was 14).

Prof Malone lees son was taking his clinic.

It might be worth contacting his old NHS clinic at the Whittington, tge LUTS clinic. He doesn’t run it but it’s run on his principles. They may be able to tell you some doctors who do private work. BUT you need to have urine and blood tests in hospital every 6 weeks.

I feel for you, I really do.

I only go to LUTS every 12 weeks….and I can stretch it out more than that if I’m too busy to go.

@DarlingPatrick
I think you are me- I'm also on yr 4 of treatment under the Prof and my symptoms had been ongoing for 12 years. It's so very sad that he's so ill, I hope he knows how many lives he has changed/saved. I remember at my first appointment him expressing anger that these symptoms are poorly treated and so often dismissed and feeling such great relief that is found someone who finally seemed to understand just how chronic UTI affects every aspect of your life

*I'd found

Oh really CovidCovid, that’s good to know. It would be great if I could stretch it out longer. I’m at the beginning of the journey with LUTS but it’s been brilliant.

She had 3 months of anti biotics inc the enhanced cefelexin one I forget the name of and iv.

I think wether they are the effective probably depends on the type of infection as they aren quite different beasts the three main kinds developing ab resistance.

In her case it was the only thing that would have worked and the infection had become a mucus ball in her bladder she couldn’t pass and it forced the infection out

Few medical interventions are without consequences that’s why you don’t do them unless necessary

The op can’t discuss them with her medical team if they don’t know it exists

OP I could have written your post. I'm 2 weeks in from a really stubborn UTI. I've suffered with them for years and antibiotics are usually the only thing that clears them up. This time I'm on my 3rd round of Nitrofurantoin and it's still lingering. I had D-Mannose tablets delivered today so im hoping they help, although the size of the tablets are making me regret my decision to take them I joined a Chronic UTI group on FB the other night and lots of people mentioned a Doctor on Harley Street (I can't remember his name), and I'm tempted to enquire about it. It's horrible living like this and completely debilitating at times.

Ethelfromnumber73
Sorry your infection taking so long to settle too. I also remember his anger at hearing what I’d been through -, rigid cystoscopy, installations, bladder training, being told there was nothing else to be done other than more installations etc. It was a huge relief to feel someone knew what they were doing and how to treat it. My quality of life is incomparable to how it was before I saw him. It’s just awful news about his diagnosis. I do hope he’s able to read some of the messages on Twitter from former students, other doctors and immensely grateful patients. I last had a zoom appointment with him in November and he seemed his usual self .

Googlebox do you think you could get to Prof Malone-Lees clinic once? I live at the other end of the country and because travel (especially since lockdown has been a problem ) and being on a very limited fixed income I’ve had most appointments by phone and then zoom. I believe the clinic treats patients from as far away as Australia and the States. I would definitely phone and ask what their system is now for patients who are at a distance. The professor says in the main their greatest indicator for treatment is the patients report of what their symptoms are doing and how frequent, severe and long any flare ups are. I remember the Professor telling me pretty early along in my treatment that generally if someone thinks they have a UTI they do, regardless of what dipsticks and cultures show.

Prof sounds like an absolute legend - I think the relief of someone saying that to me would make me cry. My GP is trying hard and sympathetic but I can tell hugely struggles with the face that nothing is showing. Plus they have limited tools and options (and training in urogynae). Thanks to you all x

Thanks @SilverontheTree and @DarlingPatrick. That doesn’t sound too unreasonable a cost at all.

Have they done a culture and sensitivity on your urine? The bacteria may be resistant to the antibiotics they’ve tried so far, so this would tell them which ones to use.

Rightyouarelove. I left my first appointment feeling like a weight had been lifted off me. I was at the point where I was seriously thinking of asking whether it would be possible to have my bladder removed I was in such torment.

I’d been told by my local hospital that I had a condition called cystitis Cystica and recommended installations to replace the GAG layer. When I told the Professor he was appalled. He said cystitis cystica isn’t a condition in and of itself, just how a severely infected bladder looks after it’s been left untreated for years and replacing the GAG layer is not going to do a thing to get to grips with an infection.

I don’t regret a single penny I’ve spent to go to his clinic even though it’s been a huge stretch financially and I’ve had to go without holidays and luxuries for years. Most patients don’t need anything like the amount of treatment I’ve needed thankfully though and the quicker it’s caught the easier it is to get rid of it.

Stupid question probably… but does your GP send away for the tests to show there is actually a bacterial infection?

I ask because I was in a similar situation for most of my 30s, usually just given antibiotics. If I did have the tests done no one ever called me with the results until one doctor took time to investigate and found there was almost always no infection! He thought it was most likely interstitial cystitis, which is frustrating in itself as the root cause isn’t clear although anything that will squeeze/ inflame/ manipulate the bladder wall could exacerbate it (e.g. sex, especially in certain positions, constipation/ excess wind, basically anything that causes the bladder wall to become damaged.

www.nhs.uk/conditions/interstitial-cystitis/

Prof would say interstitial cystitis doesn’t exist, it’s a chronic uti.
Certainly I was told I had it but 3 months of full strength antibiotics and long term Hiprex have cured my symptoms. Surely if there were no infection then antimicrobial treatment wouldn’t work?

@DarlingPatrick that’s so reassuring - I want to someone to tell me it won’t be like this forever. Incidentally, I started D-Mannose yday and feel better than when I posted. Not good still, but better enough not to feel desperate and panicky. Maybe it’s the antiobtics (day 5) who knows.

@PARunnerGirl yes they’ve sent at least two samples off and nothing to show (a few white blood cells but not enough to worry)

@SilverontheTree I’m not sure because over time the inflammation will reduce and symptoms will ease, especially over three months. And if the OP’s tests aren’t showing signs of a bacterial infection (i.e.much higher cell counts and from what I read from the OP’s last post, no bacterial growth in a culture test), then I’m not sure there could be a bacterial infection there at a level high enough to cause that amount of discomfort.

If you have symptoms you have an infection.
NHS tests are notoriously inaccurate.