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.

You have my greatest sympathy @Rightyouarelove as I have endured 26 years of this and honestly wished I was dead when it was at its worst.
I'm even reluctant to write or talk about it now as I've been okay for a year or so in case I somehow jinx myself.

I had the cystoscopy and saline installation twice and did definitely benefit from these procedures. I've used Waterfall D-Mannose intermittently and it possibly helped. I refuse prescriptions for short course trimethoprim and insist on a minimum of 5 days of nitrofurantoin. I did have a three month course of trimethoprim 100mg at night which I thought was a waste of time but in hindsight I didn't have an infection for a long time after.

I have absolutely no clue why I've not had an infection for a good while. I do drink a ridiculous amount of water, minimise alcohol to special occasions and only two caffeinated drink a day. I always go to the toilet straight after sex and have stopped having sex during my period as I think this was a trigger.

I wish you and all the other sufferers well and pray for a cure for repeated UTIs and interstitial cystitis

PARunner lab test after lab test were coming back normal but when a fresh urine sample was examined under a microscope it was absolutely full of white cells and pus and I was told that lab cultures and dipsticks have always been poor predictors of infection. They were designed to detect upper urinary tract infection not lower as I remember and this is how people end up in a horrible state - told they have no infection and that it's IC (which the professor says is inflammation caused by infection) and then given all types of procedures that ignore the underlying infection. If (mainly) women turning up at their GP saying they have a UTI were listened to and given 2 weeks of ceflex, trimethoprim or nitrofurantoin he said he wouldn't have needed to set up his clinic. He says he treats the 'UTIs from hell' - the ones that have gone on for years and become chronic and difficult to clear because the tests used to detect them arent fit for purpose. It's so sad that so many of us have been made worse by the people who want to help us because they have to stick to the guidelines for diagnosis and treatment

I second everything that @DarlingPatrick has said.

I started with a uti 7 weeks ago, first time I've ever had one and it was horrendous. I was initially given 3 days worth of nitrofurantoin, which helped but it didn't take all the symptoms away completely, it gradually got worse again over the course of a few days, then I was given 5 more days of nitrofurantoin again they really helped but at the end I still had some lingering symptoms. I then had my urine tested and given 3 days of trimethoprim while I waited for results, those did absolutely nothing and it turned out the infection had cleared up but my symptoms lingered anyway, 7 weeks later and I've only just started to go almost a full day without any uti symptoms. I've been told the initial infection had irrated my bladder and urethra and it can take awhile to settle. My doctor prescribed me amitriptyline a few weeks ago and since then it's gradually eased to only having the urge to pee occasionally now rather then all day everyday. I have also been taking D-mannose and cranberry tablets daily and I drank alot of lemon barley water

@Everly18 thank you - so sorry you have been suffering too. Hopefully it has cleared for you. D-Mannose seems to be helping in some way. Thank you for the lemon barely water - I’ll try that. I usually drink Rooibos tea but haven’t even dared to have that recently. Hope you continue to improve.

Ah yes, the barley water and nettle tea - plenty of both!

I'm so sorry to hear you're having a tough time with UTIs! I really suffered with them in pregnancy and am still prone to them (my youngest daughter was 18 in November!). Mine got into kidney infections and stones, was severely debilitating and I was referred to a local consultant who was very good.

I was put on a 3 month course of Ciprofloxacin (which my dh - Whois a GP - says is basically bleach for your insides!) and also given post coital trimethoprim. I also make sure I wash well before and after sex as I got irritated very quickly. I still get utis 3-4 times a year but they are well treated with a 7 day course of whatever I haven't had for a while, usually cipro or coamoxiclav as I have the postcoital trimethoprim and nitrofuratonin makes me vomit. I've twice had to go back to a (different ad we moved) consultant and had a repeat of the 3 month course but not recently, I seem to finally be much better.

I can recommend you a good consultant in Inverness or Glasgow if required!

All the best x

I had this except it did feel like the antibiotics were doing something but it never fully went and then came back whenever I stopped them. NHS we’re absolutely useless. I had 6 courses of 3 day antibiotics over 3-4 months! One of the doctors tried to suggest it was all in my head, at that point one of my symptoms was urinating loads of blood…

D mannose saved my life I swear. It doesn’t work as fast as antibiotics for me but it works. Take absolutely loads until your symptoms subside and then keep taking it everyday for a few weeks. Some people just take it everyday all the time for prevention., I’ve never had a full blown attack since. Sometimes I feel like it might be starting so I just start d mannose again and it’s never developed into a full blown infection. Whereas I used to get infections once or twice a year (that apart from the last awful time would clear up with antibiotics).

Weirdly I’ve mentioned d mannose to doctors and nurses a few times and they’ve always never heard of it.

D Mannose does seem to be helping - unless it’s a delayed reaction to the antibiotics - who knows. Will keep taking it for sure.

What is D mannose and where can i buy it ? is it available in the UK ?

D-mannose works for me to clear up a bout. And now, to avoid getting a UTI I’m super paranoid about cleanliness and sex (no spontaneous kitchen table action if I haven’t had a shower ;-))
If I feel I’ve put myself at risk during sex I’ll have d-mannose as soon as possible afterwards.
I haven’t had a UTI for a long time thanks yo this (touching wood now too!)

@kermitswig i buy it on Amazon in powder format that dissolves in water.

I am using Pro Ven for women- its a probiotic. I started using it when I got thrush. Got rid of it easily with the tablet but was then still sort of uncomfortable and getting cystitis symptoms as well. All the reviews said it was great for UTIs as well as vaginal issues as the microbiome is the same. All those anti biotics may have knocked your biome out of whack. Since I started I have not a recurrence of either problem. It might not help if your problem is more serious but it might help a bit. I started with 2 a day and a big glug of kefir.

@kermitswig so sorry I didn’t reply to you first time around (missed your post somehow). How are you? Any relief?

So - it’s back (I’ve name changed for another thread hence the change in username). I had 7 days of relief - I thought because of trimethoprim. But then as soon as I stopped it, massive flair. Started it again and now it’s having no impact. Constant discomfort in urethra (burning feeling) and bladder ‘awareness’. I still don’t have classic UTI symptoms (urgency and the like). It is intolerable. I have booked into Prof Malone-Lee’s teams clinic. So saddened by his death. He is such a loss to women everywhere. We are seriously just left to suffer - chronic UTI, endometriosis, prolapses etc - all minimally researched and little holistic care provided (Prof excluded). So pissed with the medical patriarchy at the moment (and generally). Just hoping they can help. Otherwise I really don’t know what next.

I'm sure the clinic will be able to help you. I've seen one of the other doctors as well as the Prof and she was great too. So sad that he has died- have you read his Twitter ? So many women saying he saved their lives

@DarlingPatrick would you be able to provide me with the contact details for the Harley Street Clinic? Thank you

Has anyone who has been seen recently in the Harley Street Clinic know how long the wait is for an appointment currently?

The information for the clinic is here- no idea about wait times, sorry

www.chronicutiinfo.com/treatment/conventional-medicine/uk-treatment/prof-malone-lee/

How are you getting on OP? I only ten days into a uti and two lots of antibiotics but your post has been helpful x

@Rightyouarelove
Just saw this post and remembered my own horrible experience. Anyway i hope you are better by now. If not i suggested going private. I was 4 months on antibiotics, d-mannose, cranberry supplements, tumeric, garlic and something else. Was literally losing hope. They even sent me to one day clinic where they put a camera in. At the end it turns out i had ureaplasma for which NHS do not test. 10 days of antibiotics and all gone.

Does anyone know can you self refer to the Harley Street Clinic or does your GP have to refer you?

Are you sure it's a UTI and not an std?

@Rightyouarelove how are you now? Im getting similar issues xx

@Starrr123 thanks for checking in 😊. Better, not 100% but better. I went to Prof Malone-Lee’s clinic in London (sorry can’t remember if I put that in my original post so sorry if repeating) - seeing Dr Kiren Gill. I started on trimethoprim and hiprex (bladder disinfectant) last March as a long-term regime. This reduced symptoms within weeks. Since then I’ve had a major flare in May which lasted about a month, another in September which was around a week. The another couple. Outside of the flare times I’ve been normal. I came off the medicine in November though have just flared so started again.

Before going to the clinic, NHS testing was saying my urine was clear (both dip tests and cultures) and my GP didn’t really know what to do other than very strong short course antibiotics. Testing at the clinic showed I had 80 white cells per whatever in my urine (it should be less than two). I have now got down to 2, but the recovery isn’t linear so as the bladder sheds this will increase.

in summary - I wasn’t making it up, going mad or imagining the intense discomfort and psychological damage. I had an embedded infection that is treatable. This will apply to most women. I feel so lucky to have a regime that works and to feel better. The clinic have been amazing - it costs £250 first appointment and then £200 - but they don’t see you more than they need to. I hope you can find your way through this - it’s treatable, manageable in the meantime and (for most women) is absolutely no reason to suffer. Sending love xx