UTI Symptoms not going away & scared

[Honeybeebear]

Hello,

First time posting but long time reader 🙂
I started having UTI symptoms 8 days ago-frequent urination, burning, not a lot of wee coming out and ordered some Nitrofurantion from the Superdrug dr. I have had a few UTIs over the years and have used Macrobid which I think is the same and I always feel a lot better in a couple of days.
first 24 hrs of taking them I felt a lot better, but had a reaction half way through the course (pins and needles in legs/arms, numb feet) and ooo doctor said to stop and prescribed me Fosformycin.
I didn’t feel too bad on Monday, went to work and picked my the prescription, used that evening and apart from urgency to wee I felt okish.
Weds- thrush symptoms, got an oral tablet
Thurs- symptoms starting to return, frequency and a feeling like my bladder is full constantly, burning etc.
Yesterday the ooo gave me 3 days of Trimethoprim although urine test was clear! thrush really bad again so used a pessary last night.
Today- felt a ok this morning for a few hours, But then symptoms of burning and needing to wee (every hour) are still there. I’m scared the antibiotics are not working and every night I seems to go downhill and get worse before eventually sleeping. I don’t know if the drs will give me anymore with the urine test negative.

the last couple of days as well as the full feeling in my bladder, I’ve felt twinges/spasms- not sure if it’s my bladder, cervix, or what but it feels constant, I’m more aware of it when I’m trying to sleep.

I’m scared, exhausted and have gone from feeling normal to feeling so vulnerable.

has anyone else had to use multiple antibiotics for a UTI?

I’m supposed to be going to Spain on our family holiday next weekend but at the moment I just feel like cancelling it or DH and kids to go without me.

Just had latest culture results. (Sample was from 3 days after stopping latest antibiotic which was 7 days of amoxicillin)
Pus cells - 11
Epithelial cells -46 (in previous tests this was only 0 or 1)
Bacteria - Mixed Growth 10 to power 7 and 10 to power 8 orgs/L

So it looks like Proteus possibly no longer showing as dominant bacteria (?) but I’m not sure I’m any further forward.
I’ve still got significant pressure in pubic area / bladder. And it’s very uncomfortable sitting down.
Been taking the vagifem for coming up to 4 weeks now.
(This has only just shown up on the nhs app so no advice from the dr.)

@dahliaaa hi, I think the epithelial cells are from bladder lining after infection.
Mixed growth is no dominant bacteria. I had mixed growths in many samples last year . One GP said it was contamination and another said it was an infection.
Are you still having symptoms ?
Maybe you need a small dose of an Antibiotic every day for longer .

Hi @Lliria - sorry I'm still going on !
Yes I've still got constant feeling that I need the loo. Pressure / pain in pubic area - and just really uncomfortable all the time.
I've had a message back from gp to say that sample probably contaminated (interesting that you had one GP saying infection, one saying contaminated.)
They've suggested doing another sample in a week or two...

@dahliaaa I really empathize with you. This was similar to my situation last summer. I had a nasty UTI that started in June that just wouldn't shift . After 3 different antibiotics and mixed growth samples a GP decided I must have Chlamydia and wouldn't give me antibiotics. The test for the STD was negative ( of course, I was 56 with one constant partner of 34 years ! ) I saw another GP in mid July and broke down in tears telling her I knew I still had a UTI. By this time I felt ill with lower pelvic pain and felt I couldn't empty my bladder properly. She agreed to do another culture but wouldn't give me any treatment, even though the NICE guidelines recommend women can be treated on symptoms as the NHS cultures miss up to 40 % of infections.
I was desperate and that's when I self referred to a private Urologist.
I don't think my GP surgery knew what to do when I didn't respond to Antibiotics and I had no continuity of care. Sorry it's not about me but I'm just saying I know how you feel. You could also get a private urine test done. Focus labs is one but they don't prescribe. Microgen is another x

It's really useful to hear other experiences @Lliria
I think I might need to go down the private route if no better in next week or so.
I've started cranberry tablets and the optibac probiotic. Doing all the self help stuff plus about 4 weeks into vagifem so don't think there's anymore I can do myself.
The info I’ve found about chronic utis is scary in terms of people having endless antibiotic treatment with many seeming never to improve - it’s really positive to read that you did get better.

I had to use long term antibiotics from Harley Street prof Malone-Lees team and I got better. I wonder if the faster you get treatment through better. Some people that go to Harley Street seem to struggle to get better. But I am symptom free after a year. I had suffered for about 6 weeks before I went and saw them quickly as the GP was useless saying that I likely had IC and referring me for a csytoscopy, which I didn't want as I knew I had an infection due to my symptoms.

That's really interesting @Panthereyes (re going sooner rather than later.)
I'm going to do one more sample with GP in a week or so but then if no further forward going to see someone privately. Obviously if things worsen suddenly (ie lots of blood / high temp etc I'll go quicker.
I can't believe how much it affects day to day life and my confidence.

Sorry can't use edit button on app @Panthereyes with the long term antibiotics - were they full dose or low dose ?

They were full dose.

Thanks @Panthereyes

I won't go through my experience again as I've posted a few times on here and probably on this board but I got better. In the end I had

• - cystoscopy and urethral stretch
• a 6 month course or low dose antibiotics
• longer on low dose aspirin to reduce inflammation (75mg a day, like the blood pressure dose)
• using careful washing around was before and after and always peeing twice after was before sleeping
• only using sanitary pads not tampons or moon cups
• probably helped also having very long periods of abstinence during pregnancy and post natal period, twice, meaning that my bladder had a long time without infection to heal

I was ill for about 5 years. That was over a decade ago. I've only had two recent UTIs in the last 3 years and they were treated very easily - both caused by period pants (sadly, as I really liked them)

I still have to be careful of acidic drinks such as coffee or OJ as they can make me feel uncomfortable again, but they don't bring back permanent symptoms. I still have a more irritable than not urethra.

I'm dreading the menopause (now 41) but fingers crossed...

There is hope.

Thank you @YukoandHiro it's good to have positive stories because a lot of the messages in various groups are very scary

@YukoandHiro was your treatment via a private urologist ?
I've been in pain all week.

@dahliaaa

I had a UTI last summer, and started the thread because I had got to the point where the GP/Nurses at the GP surgery were just dismissing my symptoms as Interstitial cystitis.

I had typical UTI symptoms and ordered 3 days of nitro from Superdrug, which I’d used a few times over the years. I had to had to stop taking it after a day due to a reaction. Was prescribed another antibiotic- Fosfomycin, but it didn’t work at all.
I the had trimethoprim prescribed by an ooo GP but only for 3 days, I felt better but as soon as I stopped taking it, the symptoms returned. I was prescribed 5 days more but only because I insisted. Same thing happened that I felt a bit better then started to get worse as soon as they finished.
I then had a week or so where I had 3 visits to the GP and all times the nurses/GP I saw refused to prescribe any further antibiotics even though my symptoms were bad- I had constant pressure, frequently and pain. They said the urine sent away (from which the results had been back the same day- so not grown for long) did not show infection.
Anyway after being told on my final visit when I was crying in pain that it was interstitial cystitis, I saw a private urogynecologist within days and he recommended tests but also prescribed 14 days more of trimethoprim. This worked and I started to recover. Still had the odd tinge for a while but I didn’t need the tests in the end.

It did take from the July- September for me to feel better but I really think this was because it wasn’t treated correctly in the first place and the days without antibiotics allowed it to worsen. I think I did have thrush also though which made the symptoms worse and had to treat this multiple times before it went.

Now I take DMannose every day, and increase it if I ever feel a twinge and also take optibac for women probiotics.

I had been used to a UTI clearing up quickly with a 3 day course of antibiotics and found it really scary when it was ongoing. I can remember feeling I wasn’t going to get better, but I did after I was listened to and had an extended consistent course of antibiotics. It does annoy me that I had to go private just to get basic antibiotics though. The GP surgery wouldn’t even listen to my questions about how accurate the urine tests were.

sorry that was long!

hope everyone on the thread is doing ok!

@Honeybeebear Hi, it's good to hear from you ! I think it's great your post is still going also proving how common this problem is- and how hard it is to get listened to !
I was very similar to you at the time and my situation was ongoing from last June to September. I also saw a private Urologist and did go on to have tests to rule out bladder cancer as I was 56 and had blood in urine.
The end result like you was once all the potential causes were ruled out it only finally went after a low dose antibiotic for 3 weeks. I too was told by my practice it was probably interstitial cystitis or a Gynae problem.
The Urologist was not the chattiest but practical . He said some infections just don't show up in high enough numbers in the standard cultures and the infection lies low. He wrote to my GP with a treatment plan of longer term of ABs if it comes back but when I spoke with a GP about that he still said yes we ll do that if any infection is proven !!!!! So basically disagreeing .
Anyone like you I take all the prevention I can D mannose, Optibac, garlic etc.
I have a standby course of Nitro. Like you I'm annoyed I had to go private just because I couldn't get anyone to listen when in the end all I needed was a longer course. I still have it in the back of my mind if I get a twinge which has created it's own anxiety. I can't imagine I ll go the rest of my life without having another but I hope if I get one it's dealt with.
I'm glad your better and thanks for starting the post because I remember feeling I wasn't alone when going through it x

@Honeybeebear I'm so glad that you started this thread. I have found it so helpful. And I recognise everything in your most recent post. I'm having a really difficult day today because things have really deteriorated this week - so it was particularly helpful to hear from you today.
My gp practice is usually good but this just seems like it is being dismissed.
I'm probably being over sensitive but it has felt a bit like - she's a woman in her 50's , what does she expect To be fair they have said to put in another sample.
I've done all the self help things including vagifem and stuck to them really diligently. The one thing I haven't done yet is d mannose because my bacteria was originally proteus but I'm going to try that anyway.
It sounds like it's a private urogynaecologist I need. I just need to find one locally and get a referral. I'll do some research and see what results from next sample.
At the moment I'm really worried about work. I am the main earner and the commute is becoming increasingly difficult / upsetting.

Ps I had a horrible reax to trimepthropim so I don't think they would give me that one again - but wasn't too bad on amoxicillin

I have huge empathy for anyone going through this. Interstitial cystitis being diagnosed just to put you in a tick box. It’s barbaric the tests etc that women are put through.
I developed an infection 17 years ago and was initially treated with antibiotics, progressive strengths as it was not getting better. I was referred to gynaecology as an emergency as they thought it may have been cancer. From then, cystoscopy, bladder stretch, biopsies, urethra stretch. Permanent pain, that after any intervention left my body in shock…one time screaming and crying on the floor..sweat pouring off me and went completely grey. They put me on morphine, talked about having a pain management box put in my back. Diets, take this, take that! I was put on antidepressants as the pain made me suicidal. I had to go to A&E many times for a catheter as I would regularly go into retention.It was a life sentence!
I even looked into dignitas.

I eventually found Professor Malone Lee in Harley Street. Changed my life…embedded UTI. It took a good year to turn things around and think I will always be prone to reoccurring issues due to the length of time it was in my system. I keep antibiotics on hand just in case, but I have my life back!

The fact that it is known that the tests are not up to standard and NICE guidelines refuse long term antibiotics as a solution, it is in my opinion a travesty and should be investigated as negligence.
Tired of women getting such a raw deal…I’m sure if it was more a percentage of men getting these issues, it would have been sorted long ago.

Sorry you had such a terrible time with it @SoloCat
I've now been referred for a scan plus having blood tests.

Thanks @dahliaaa
I’m sorry that you’re going through it too. If you have no luck through the normal channels, then going private is your best option.
I had a few different antibiotics from the private clinic…I think it was about 3 or 4…plus Hiprex.

Really feel for everyone ❤️

@SoloCat yes, it is a travesty and there aren't many GPs/ nurses who are totally empathetic. My recurring UTI symptoms ruined my summer last year, never went on a planned holiday to visit my ageing mother in Spain because of it. It's affected me mentally too a bit as I'm wary of getting it again.
When I asked one GP at my practice if it could be an embedded UTI she actually huffed and snorted . My GPs were more focused on proving it through an MSU or prefering to say it was IC.
I eventually paid to see a private Urologist who knew of Professor Malone's clinic and did acknowledge that NHS testing didn't pick up low lying bugs and that long term antibiotics can work. I did get better and the consultant wrote to my GP with a treatment plan of 3 months of Nitrofurantoin at a low dose should my symptoms return- but the GP said "" yes we can do that if you have a proven infection " so basically disagreeing with the treatment pathway. Unbelievable.

@SoloCat I'm just waiting to get these tests done and then I think inevitably I will need to go private. It's had such a huge impact on my life. Unbelievable really for something so relatively simple. I feel guilty when I think about illnesses other people are dealing with but it really has had such an impact.

I wouldn’t waste time on feeling guilty. You are entirely justified in how you feel…giving birth for me was less painful and much shorter lived. It is the worst pain I’ve had in my life and being fobbed off is insulting. I had to go from a full time job, with a great social life, to part time with the inability to travel anywhere. I was on my way to a flight to Fiji for six weeks..I had to turn round and go home, just couldn’t face the pain of the journey.
It’s a life changer…don’t let it ruin yours…anyone who thinks you’re overreacting, ignore! Your body, your pain, your life. You do not have to put up with it!

@SoloCat I'm so glad you got respite after going through such an awful time with it. Thank you for the messages

Just had latest culture results back.

Mixed flora >10^8 orgs/L

Surgery said that it shows a 'small amount of bacteria' but when I asked if over 100 million is small - they said ... actually not small.
Obviously doesn't show one over riding bacteria.

Have some thrush treatment in case that's a problem (it's possible) and have then been given another week of amoxicillin.

I'm not optimistic tbh so after that I'm going to pay for a focus labs test and also look for private urogynaecologist.