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.

@Pengydog glad to hear your trip to Harley Street went OK, I saw Dr Harvey too. I hope your GP agrees to prescribe, mine wouldn't and I hope you get some relief from the treatment soon.

Glad to hear it went well @Pengydog and you are armed with new ABs. Hope your GP approves the Rx.

Well I tried to amend my travel insurance after visiting the doctor yesterday to add bit more than “ irritable bladder”
I’ve tried every single insurance company, not one will insure me for “ awaiting investigations”( only all clear company but they needed more that 48 hours notice to write a policy). My son who is coming to USA with me says just risk it but I can’t. I’d live in dread of peeing blood and visiting medical care in New York then Singapore, which would totally ruin it for me ( and everyone around me)
Sadly I’ve postponed both trips and rebooked for next year. It seems to be easier to get cover with a diagnosis rather than “ awaiting”
That will be 2 years since I’ve seen them all, although eldest is planning a Christmas trip - I’ll get a few days and the mother in law will get 3 weeks - but that’s another thread! And I never make a comment, I’ve learned how to be a decent mother in law on mumsnet.
Youngest son is still going with instructions to do lots of FaceTime!

Glad to hear the Harley Street excursion went well

@Tidsleytiddy hi, what lab did you use please ? I don't trust the NHS ones ! Like you my GP was being sniffy when I asked about private labs so I know she wouldn't co-operate. I wanted to use focus labs but they don't prescribe.

Hi.Sorry for late reply. I bought the Urokey test from Microgen DX. It was about £280. Got results in about two days. They then send these to their affiliated pharmacy and you then have the option of them (after looking at your results) prescribing the antibiotics. The pharmacist calls you to discuss the findings and tells you what he’s prescribing. You pay via email and the tablets arrive in the post.

Hi everyone, how is everyone doing?

Got my results from Focus Labs, not sure what it means or where to go from here really,

They sent me a message saying that they accidentally ran a full EQUC test on my sample but are not charging me any extra, which is good of them 😁

My results show:

trace blood
trace protein
leucocytes <5

Bacteria
1.Enterococcus spp. 10 *
2.Coagulase negative staphylococcus <10
3.Klebsiella pneumoniae * Post enrichment
4.Escherichia coli * Post enrichment

There is a list of antibiotic sensitivities and resistances too

Their comments say that the Staph and e.coli could be contamination, (I wiped with a saline wipe before sample, my initial UTI was e.coli ) but could be in the urine in low amount, but the Enterococcus can cause UTI symptoms and to seek medical attention if symptomatic

Can anyone help me make sense of this? Does this mean that I have an embedded infection or not? Have I had it the whole year and GP tests do not pick anything up?

I am still in agony and now confused

Where would you go from here? considering I have had a cystoscopy and discharged from Urology , they said I just had painful bladder syndrome, no fucking shit Sherlock, course it bloody hurts😬

Thanks

The klebsiella and E. coli are easily treated with antibiotics. Not sure whether the other bacteria could be embedded. It’s a f minefield to get to the bottom of it. Does the lab have a pharmacist to discuss the results with?

hi, thanks, I do not think so. I do not know how to get antibiotics though, GP no help, they just said my pain is caused by low mood as their tests were negative

Well their urine testing methods were developed in the 1950s and as we know things have progressed since then. Can you talk to a pharmacist at your chemist or ask to talk to a nurse at the GP practice? You need to keep on until you’re are prescribed what you need. You can order antibiotics online as well. You would have “low mood” being dragged down by all this! It’s fucking horrendous and robs you of a normal life

Take your results to the chemist and ask to speak to the pharmacist. Pester the GP surgery and show them your results. The attitude of NHS drs on this issue makes my blood boil x

I am considering trying to go to Harley Street Clinic if I can and it is going to cost a fortune, but I have lost all faith in the NHS to be honest, both by GP and NHS urology just dismissing me as the tests they did were clear. I have been in agony for 15 months, I am convinced I must have embedded infection by now. Even if I can get GP to do a prescription it will only be for 3 days, that is how this all started by them only giving 3 days cos its the Rules🙄 and short course is useless, it just comes back when I finish them

Mmm the three days they prescribe doesn’t touch the sides. Harley Street sounds a great idea especially after 15 months of pain. I’m sure they’ll get to the bottom of it for you OR try the Microgen DX Urokey test. Their pharmacist will advise and prescribe.

I am actually furious now. I cannot even sit down properly I am in that much pain. Last time I spoke to GP he said "mmm your (severe) pain has been stable for this whole time so I think we can leave it" I mean, WTAF??? 🙄

@StanleyGoodspeed You’ve got to make a fuss! You need to take your results to the GP surgery and demand this be treated! It’s so easy to treat! The drs act like gatekeepers on the antibiotics! Do try the Microgen test. Go on their website. Honestly they were bloody brilliant. Ok so I needed HRT cream too and my dr happily prescribed that (mind you I had to tell him what I’d researched and needed) but to be in pain for something that will respond to the correct antibiotics is not fair

I do not think my docs will accept this report, they will make me drop in a sample there and as it will be negative again they will say no treatment required

More than likely yes. Try Harley Street but do get a Urokey test first. You will get to the bottom of it I’m sure

@StanleyGoodspeed This is so frustrating for you and adds to any stress.
This is why I wasn't sure about sending to focus as if it shows something , we need to get get help from a prescriber.
I would maybe ask a pharmacist but they may direct you to a GP ( the irony )
If you can do it send a sample to microgen as at least they can prescribe.
There is always a reason for pain .

I suppose by the time you ve spent money on sending off samples you could have gone to HS.
Keep searching , put pressure on GP.

Yeah, I do not think that I will order any more tests, I will try to get into Harley Street

@StanleyGoodspeed

Can anyone help me make sense of this? Does this mean that I have an embedded infection or not? Have I had it the whole year and GP tests do not pick anything up?

Stanley, I am furious on your behalf, your suffering has been dismissed and minimised. To answer your question: yes, it is very possible that you have an embedded infection that is not detected by the outdated tests that non-specialists rely on.
Here's a link to Bladder Health UK and there is a section on chronic uti and a list of specialist practitioners. If you explore all the menu options, you'll find a document that explains (with good diagrams) how an embedded infection 'works'. I think this document is the same as the one you are given as a new patient at Harley Street (it looks very familiar), and it is helpful to understand the mechanism of the infection, how flares occur and the reason for long-term high dose antibiotic treatment.

https://bladderhealthuk.org/page/index/294

I am also a member of Embedded/Chronic UTI Support Group on facebook and became aware of how many thousands of people are affected by this horrible condition.

Wishing you all the best xx

@Pengydog

I'm so glad your appointment went well and you were listened to and understood. I hope the cefalexin works well for you and that your GP will prescribe it. Please let us know how you get on...

thanks all, and for the link, some useful info there

I am very down today and do not know what to do now

Morning. Sorry to go on and I know you said you’d rather not order another test but Microgen DX also do Next Generation Sequencing when they test your wee sample. Not sure what it actually means but if you have a look at testimonials from women who have used the service if there is any embedded infection they’ll find it. Have a read of the Urokey test and see what you think x

Some screenshots

How is everyone doing? Hope you're doing ok @StanleyGoodspeed Did you decide on your next move?

I took 3 days of ibuprofen when my I'll advised bubble bath kicked off the pain again and it worked. Keep forgetting to take the Vagifem though - remember halfway through the day. 🙄 but been to gym twice this week so things looking more positive. Really hoping the HRT will do the trick as I can't live on ibuprofen and I can't live without bubbles in my bath 🛁 or glass 🥂!

Just caught up on the thread. Sorry to everyone who is still suffering.

I’m mostly symptom free at the moment, just the ofd pain now and again not as sharp as before though. I’m continuing with D Mannose, probiotics and mostly drinking water or peppermint tea. Miss wine- although have had the odd glass.

Would love to have a bath though, was having one daily but not had one since July!