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.

I think that you should ask for some swabs to be taken in case you're being treated for the wrong thing maybe.

Poor you.

Has your GP sent a sample of your urine to be tested to see which antibiotics would work?

Thanks for your reply - sorry I missed a few things. I’ve had 3 urine samples tested, STI swabs and bloods done. Very small number of white blood cells in urine but nothing to warrant concern. It makes no sense to me - I’m so sure it’s as a result of sex (sorry TMI) but if it was then it was be so simple to clear. Not had it long enough for it to be IC or chronic.

In that case, you need to see a consultant. You can find consultant on this site:

www.spirehealthcare.com/health-hub/new-to-private-healthcare/how-to-choose-a-consultant/

Try and find one who also works at your local general hospital.

Good luck.

It's only a short term fix but this stuff: www.amazon.co.uk/Azo-Standard-Urinary-Pain-Relief/dp/B001JK3NTA?tag=mumsnetforu03-21 is brilliant. You can only take it for a few days at a time, but it really does help enormously with the symptoms.

Good luck! I've had problems with recurrent UTIs (though slightly differently from yours - mine would clear up and then come back, and I was fine every time once my urine had been cultured and I had the right antibiotic) but mine are largely under control now (touch wood).

I had very similar needed 3 months of antibiotics to clear it up.

OP - I could have written your post literally word for word. Mine started 3 weeks ago too and I have a constant feeling of needing to go. Dr gave me 3 days of antibiotics, I'm on day 3 but the tablets have had no effect. I am at a total loss what to do. I cannot live like this. I cannot go anywhere or do anything as I need to be near a toilet and your words 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 describe exactly how I am feeling.

I have also had UTIs before but after a few days of antibiotics it usually clears up. Is there some super strain UTI out there, because this is not normal.

I cannot carry on like this. I have (had?) so much planned for this year but I'm questioning my ability to attend it all. Iv'e been holed up at home for most of Jan going no where due to this issue.

@FabricPigeon thank you - I’ll try that. Though mine is less pain and more pressure and discomfort. At this stage I’ll try anything though

@ILoveAllRainbowsx I’ll take a look at that link too thank you

I had this for years. Weirdly reflexology cleared it🤷🏼‍♀️

Have you all have Covid recently? Only I looked this up when I got the same after Covid.

You shouldn’t need to go privately for this. Your Gp should be able to prescribe stronger and longer length antibiotics- cefalexin, doxycycline or even ciprofloxacin. The ones you’ve had are fairly mild one and won’t necessarily shift a stubborn UTI.

I’ve had recurrent UTIs since I was 14 and I’m now 41. I take daily cefalexin long term to keep them at bay but when I do get the odd flare up I take 3x cefalexin and that usually clears it.

At this stage I really do think it’s worth trying different antibiotics.

I would look at the Harley St Clinic founded by Prof Malone Lee. He trained a team of doctors in his methods.
I saw Mr Ali and he sorted me with 3 months of Co amoxiclav. I still take Hiprex and post coital nitrofuratonin. He isn’t working privately any more though

I have the same problem. I’ve lost count of how many antibiotic courses I’ve been on in the past year, it seems to clear up and then in maybe a few weeks it’s back, probably because it was never fully cleared in the first place.

I found this website earlier today which has the most useful information I’ve ever read about recurrent utis: liveutifree.com/ It really helped me understand why I’m constantly feeling like it’s ready to flare up and it frequently does.

Takeaway advice is that a recurrent uti will not be fully removed with a short course of antibiotics and that a specialist should be seen.

@Rightyouarelove sorry to hear that you're suffering. UTIs are awful. I've suffered for years with an embedded uti due to not being treated properly.

Prof Malone's clinic is still up and running. You're right that sadly he's very unwell, but he's not been seeing patients for sometime. I'm under Harley Street and doing so much better now I'm on long term antibiotics. I would advise to get seen ASAP, the quicker you can get in antibiotics, the less time you should need to take them.

Professor Malone-Lees Harley Street clinic is still up and running. His son and other doctors he has trained are there . Have you been in contact? I can give you the contact details if it would help.

In the meantime, as a pp said, Azo will help provide some temporary relief.

My samples always came back clear too. Harley St will look at it under a microscope.

My post crossed with TabithaTiger. Definitely agree the quicker you can get it properly treated the shorter the treatment you'll need. I'm on my 4th year with an infection that was mismanaged for 12 years. I'm one of the 'outliers' that has needed much longer treatment than normal. I'm so much better than I was though . I can really empathize. It's just an awful and exhausting condition

@SilverontheTree are you able to give an approx idea of cost to see a doctor at the clinic? I’m thinking about making an appointment, but want to make sure I can afford it first :)

Thank you all so much - I wish you all better but it’s such a comfort to hear people recover (I feel like I’ll always feel like this). I’ve now been prescribed Pivmecillinam over the weekend.
I will look at the Harley Clinic and give them a call, so reassured that there are others trained to understand this better.

Trimethoprim is pretty much useless for most people/infections these days. You probably need a 7 day course of Nitrofurantoin.

I've been prone to infections and have had some that feel like they haven't cleared after a course when it's actually a post infection inflammation.

I now have a very sensitive/irritable bladder and have to be mindful of what I eat. No red wine, no spice and small amounts of citrus/chocolate/sugar etc. If I eat the wrong thing it feels like a really bad UTI. I manage with Azo and drinking water with bicarb.

Sympathies, it's miserable, especially when you're fighting to get it sorted.

Just some reassurance OP that it can get better. I was similar last spring, thought I had interstitial cystitis etc. Perseverance and complete abstinence from alcohol/caffeine helped loads too.

I believe it’s £250 for a first consultation at Harley St but as I say I saw Mr Ali which was covered under BUPA.

As well as Prof’s son in Harley street there is the LUTS clinic at the Whittington hospital, the team there were trained by Prof. They are still accepting nhs referrals I think.

SilverontheTree. I believe that’s right and follow ups are £200. It’s a lot but it has changed my life and I have no regrets about going without holidays and other treats so I can afford to get this horrible condition sorted and my quality of life better. I remember Professor M-L saying that if GPs could go by the symptoms and look at samples under the microscope like they used to in the past and then treat initial infections thoroughly there would be no need for his clinic.