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.

So many of us are suffering from the same thing. I’ve tried to sort it with Hiprex and antibiotics but it feels like something I’m just going to have to live with. Thanks for all the suggestions.

I think it's due to the rising antibiotic resistance.

The bugs that cause UTI usually live harmlessly in our bowels. But if they get up the urethra into he bladder, well, it's painful agony.

Over time, they are either -

1. Not treated correctly or for long enough, due to the NHS culture thresholds ( number of bacteria which need to be in the sample to be classed as a UTI) being completely outdated and based on pregnant women with serious kidney infections in the 1950s (!!). See also, testing whilst having started antibiotics, testing dilute urine, and 3 day courses (even the person who invented penicillin warned against this).

Even the NHS website itself states that these tests are unreliable -
" Chronic UTIs - In some people, short-term antibiotics for a UTI do not work and urine tests do not show an infection, even though you have UTI symptoms.
This might mean you have a chronic (long-term) UTI. This can be caused by bacteria entering the lining of the bladder.
Because urine tests do not always pick up the infection and the symptoms can be similar to other conditions, chronic UTIs can be hard to diagnose.
Chronic UTIs are also treated with antibiotics, which you may have to take for a long time.
Chronic UTIs can have a big impact on your quality of life. If you have been treated for a UTI but it keeps coming back, speak to your GP about chronic UTIs and ask to be referred to a specialist."

2. Treated, but the remaining bacteria entering the lining of the bladder and not picked up by testing - as it says above on the NHS website - but no treatments seem to be offered for this problem, mostly affecting women !! The bacteria enter the cells lining the bladder and cause chronic low-level but still life-altering symptoms and inflammation, but are not picked up on current testing thresholds (see above where the NHS admit this).

Or

3. Antibiotic Resistance. Every time you get a UTI, if it is from your own bowel flora (most are), it gets treated with antibiotics, and is hopefully eradicated from the urinary tract (unless (2) above occurs), but they cannot eradicate all the UTI bacteria which lives normally in your bowel. This bacteria which lives harmlessly in your bowel then becomes super-bacteria, that is it acquires resistance to more and more antibiotics. If it is then transferred or manages to get near, the urethra and up to the bladder again in the near future, it will cause havoc again, and it may be resistant to whatever treated it last time (this has happened to me).

Sorry for long post

Get some Buscopan to sort the bladder spasms. I was given these after my hysterectomy for bladder pain and spasms and they worked. I've had a couple of utis since and along with the antibiotics I take two Buscopan just for a couple of days until it's calmed down. Word of warning though on the macrobid giving you pins and needles. I had that too on those so they prescribed me cipro and it was ten times worse and has left me with nerve damage so please don't take those if you're sensitive to the others. D-mannose and Buscopan alongside your antibiotics will do the trick. Hope you're better soon, it's pretty miserable I know.

Ibuprofen helps me and these

Oral Probiotics for Women | 120 Tablets | Thrush, Cystitis, UTI & Bacterial Vaginosis Treatment | Probiotics for Women Gut Health | 3in1 Healthy Gut Flora, Reduces Bloating & Yeast Control amzn.eu/d/d30GgYd

I always have the same issue with UTIs, and it feels like they will never go then one day I realise it's gone. It's like my bladder gets over sensitive:irritated afterwards

Hope everyone doing ok. I don't want to jinx it but my pain has really subsided overnight. 5 more days of amoxicillin. This thread has been terrifically helpful so thank you all. I really hope you get on your holiday OP.

And I'm whizzing town before we set off to get some of these probiotics - going to try to find some that covers all bases (gut and bladder)

@LittleMonks11 That’s great!

I feel a lot better this morning, but on constant edge for fullness/urgency feelings to come back. I’ve got 4 more days to take the trimethoprim.

the thrush treatment worked also- I still have 2x more Fluconazole to take but I was in such a state yesterday I can’t remember if the dr said one each day for 3 days or 1 every 3 days!

Hi, how are you feeling today ?
I took another day off work so losing money 😖 went to GP who wouldn't change my antibiotics or give me more as my urine was clear on dipstick test , she was adamant there couldn't be an infection. I had swabs taken to check for STI and candida , BV. These are the standard swabs . I've been married 34 years and not sexually active theses days so was surprised by the STI one but apparently Chlamydia can lie dormant.
I had my worst night last night, could barely sleep for bladder pressure and pain.
So now I've got no antibiotics and have to wait for test results 😔

@Lliria so sorry that you are not feeling any better. The pressure when trying to sleep is just the worst.

I feel a lot better this morning than yesterday but I’m really on edge for every little twinge thinking the pain is going to return.

What has the GP suggested if it continues? The GP I saw yesterday said we can’t give any more/different antibiotics until the test is back from the lab (the one I did Friday) as urine was clear again.

Hi, again x
Well my GP said pretty much the same as yours. Won't give / change ABs until lab results back. So I'm beside myself now. So pissed off. I asked her about urine not showing anything if I've had ABs but she s insisting it would still show a resistant bug. So if it doesn't what then ?

I'm on the internet now looking for ways to get Norfloxacin which is an AB I used when lived in Spain, it's brilliant but we don't prescribe it here.
I'm also looking at private GPs.
GP said more or less put up with it until we know. She even said she thinks I have Chlamydia ! And asked me if I've had a new sexual partner !!! I haven't
I KNOW this is a UTI.
Like you just feel taking all these ABs has been a waste of time x

Please search my past posts on this. I went down the embedded UTI rabbit hole. Multiple rounds of antibiotics and so many ridiculous treatments. Also had estrogen, I did it all. It was “interstitial cystitis” which is really just a nothing diagnosis as ultimately all the pain was neuroplastic. Read about TMS and bladder issues and Look at Nicole Sachs podcast episodes with Whitney and Kitty and listen to their stories. I had UTI symptoms for 6 months and they totally stopped once I began to understand there was no actual infection there. If someone said this to me when I was where you are I wouldn’t have believed them or listened by the way, so I get it if you pass my post by. But you shouldn’t, trust me!

Thanks, I ll look at this.
How did you get rid of your symptoms then ? I just want a decent night's sleep 😖

It’s just so frustrating and frightening to know that it’s almost like there isn’t any options when the tests are negative. Surely the symptoms should be treated!

I haven’t heard anything about my lab test results. I might try and ring the surgery now.

Glad you are feeling better @Honeybeebear keep on keeping on and try to think positive. I know it's hard it's so draining physically and mentally.

So sorry you are suffering @Lliria my GP gave me 7 days of amoxicillin with a negative leukocytes dip at the surgery on Monday (but microscopic blood) because I said I had symptoms and a positive Tesco test that morning plus going on holiday. However previously they left me wallowing in pain while waiting for a lab test last year. I ended up on codeine for the pain while they did every test under the sun except a urine east (I had never had a uti before) and finally got antibiotics at A& E where I was sent for the pain and a suspected aortic aneurysm from an OOO doctor! What a waste of resources! I hope you get some answers very soon and some treatment. I was also questioned about sexual partners!! I said what's that then?!

We're on our way to the ferry and I'm loaded up with antibiotics, D Mannose, and Pro-Ven. Feeling a lot better.

Hope you all feel better soon

@LittleMonks11 hope you have a lovely time!

I can feel the symptoms of the thrush coming back already I think! I’ve taken another tablet… I think it should have been every 3 days according to the NHS website.

I feel like I’m trapped in a cycle of taking tablets and then getting a bit better but not fully better, then it starts again

Just called up about my Lab results and they were normal!

I doubt they will give me anything else now so I’ve got to hope the trimethoprim works.

@Honeybeebear They will be normal, because you've been on antibiotics. Also if your sample is dilute or not first morning. The threshold for what the labs report back as a UTI is really, really high. I think at least 100,000 bacteria per ml!!

You could look into Microgen testing, digital microbiology testing, or broth culture. They are all legit, the NHS even uses them sometimes for really serious infections, doctors in the US routinely use them. They are really expensive though and you need to be off antibiotics for 10 days to take them. They at least give you a picture of what is going on in there though.

I'm really sorry you are still having symptoms. I'm about 80% better but I'm on day 15 of antibiotics! scared to come off them now!

I don’t think I can really afford any further testing.

glad your feeling better- I know what you mean about scared to come off them. I finish my last one the day we go away and I’m terrified of it all starting up again really bad.

The weird spams and urgency feeling is back again this evening. I did. drink a lot though in a the space of a couple of hours- maybe it’s connected?

Hope you have a lovely holiday. If you need to go to a french pharmacy or you want to try your luck you could get the antibiotics they use and it may be Norfloxacin.
I researched today why we don't get it in UK. Its not licenced here but is in Europe, and the states It really good for UTI. I'm gonna try get some when go to Spain ( if I go !)

I'm expecting my result to be exactly the same when I check tomorrow.
I too have had lots of AB s so it's going to be Negative 😔
It's almost like you have to wait to get a bad infection to get a bad result,it's crazy.
I think you said you were going to Spain ? Go to a farmacia there and ask for some Norfloxacino. Some may say "no medico" but some will sell you them.
Anyway even if you had to rock up at a Spanish Medical centre they would treat you. I lived over there once and their medical care is good.
I hope you get better x

I'm sorry to hear you're struggling OP; UTIs are miserable. It might not be relevant for you, but I found cutting out caffeine really helped my issues.

I had a 6 year cycle of taking samples to the GP with all the symptoms of a UTI. Dipsticks and/or lab samples virtually always normal. It was ruining my life. Referral to urology just did invasive cystoscopies, a urethral stretch, bladder infusions, low dose antibiotic daily. It got worse and worse. My life was utterly restricted and miserable. In desperation I paid to go to Professor Malone-Lee’s chronic uti clinic in Harley street. He tests fresh samples under a microscope, counts the number of white and epithelial cells and said it was one of the severest infections he had seen. He was utterly appalled at how the NHS diagnose and treat utis . He put me on Cefalexin and Hiprex and I had to let him know about any side effects after 2 weeks. I was ok and kept taking them and saw him again in 3 months. White cell count was down a bit. Kept going and ended up taking antibiotics for 2 years as it was such a bad infection. I take Hiprex all the time to keep the urine acidic which kills bacteria.

My GP put the prescription on NHS repeat. It has literally revolutionised my life. I wish I hadn’t waited so long before seeing him as I wouldn’t have needed to take antibiotics for so long. My bladder was severely ulcerated by the time I went privately. Local urology diagnosed the ulceration as some weird condition. Professor Malone-Lee said there wasn’t such a thing. It was just what a severely infected bladder that had been left for 6 years looks like.

Professor M-L died a couple of years ago, but his soon and research students have carried on the clinic and follow his protocol and all his research. If there is any way at all you can afford to make an appointment if this doesn’t clear , I can’t recommend it enough. He said if someone’s first UTI was treated with a 2 - 4 week course of Cefalexin or nitrofurin, he wouldn’t have needed to set up his clinic. His theory is if a woman feels she has a UTI then she more than likely has one regardless of what dipstick or cultures show.

I guess the next stage is asking the Dr for a referral. What’s really difficult is I see a different dr/nurse each time and it’s like I’m explaining the problem over and over again.

it makes so much sense to treat with longer antibiotics. I can’t think of anywhere else in the body with an infection that would only require 3 days of antibiotics!

each time I’ve started an antibiotic I’ve felt better within 48 hrs, then gone backwards.