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.

@Tableaufox could you order some more from an online pharmacy ?
I would. 5 days is sort of borderline but it may well work. Can't see why they couldn't just give you 2 days more.
Im unable to tolerate Nitro makes me vomit so I always end up having the broad spectrum ones from the beginning.
As to whether the Nitro is dampening an infection or not , it could well be as you feel better when on ABs. It's when resistant bugs crop up later that are the problem.
Have you sent away a urine sample ?

@Lliria yes urine sample was done before when they prescribed ABs just in case - I had just finished a 3 day course and felt the pangs of it returning the day after - they said “no further action”. I assume as I’d just finished 3 days of nitro and felt ok the bacteria didn’t meet the threshold

@Tableaufox I think after ABs it's possible to get false negatives. Most of the bugs have been wiped out and as you say there aren't enough to show on a sample. I have this problem. I was told to be off ABs for a week before doing another sample but when suffering it's a very long time to wait.
Hopefully this course will put it away .
There aren't any newer ABs in circulation in our health service and I think that's a problem. Nitro was developed in the 1950s !
I lived in Spain a few years back and they use new generation ABs that are very effective for UTI. They can be bought from a pharmacy there. I wish I'd bought more before coming back !

this is interesting...! I have a doc app next week so I will wait for that to know where to go next. I am definitely not feeling 100% and ABs have wiped me out

Have been for a cystoscopy this morning. Nothing found apart from inflamed urethra and still have blood in urine. Feeling so frustrated, have had lower bladder pain and painful urethra for 10 weeks now 😢

The urologist asked if anyone had suggested interstitial cystitis. I really don't want to be fobbed off with this label as it doesn't actually say why I'm having so much pain and blood!

I've been referred to see another urologist next month to discuss interstitial cystitis. Thought I would give you all a laugh at the name of the doctor!!

I was told I had interstitial cystitis, to live with the pain and try to relieve symptoms by following the incredibly restrictive IC diet, which didn't give me any relief. Six months of full dose antibiotics and hiprex means I am now symptom free. I would push back against an IC diagnosis, something must be causing the pain!

There really needs to be more research done into this, urgently. Its such a life altering problem and affects women so much more than men.

I've also been told I have IC. IC doesn't mean anything. It literally just means inflamed bladder. But every 'inflamed bladder' symptom I've ever had, since I was 4 years old, on and off, every single one of them, started with an E Coli urine infection!! The urinary and vaginal and gut microbiomes are connected as well, and it's been proven that some BV causing bacteria 'wake up and help' the UTI causing bacteria. It's ben proven that UTI bacteria can live dormant inside the lining of our bladders and cyclically emerge to cause recurring infections.

I'm back in pain again after a couple of weeks of being okay. I think my perimenopause hormones are aggravating things.

@Pengydog I'm so sorry you are still experiencing pain and blood. I'm glad though that your cystoscopy didn't show anything else. With the amounts of blood, I was worried. I'm not sure what to suggest though, other than the more accurate testing and some pain relief xx

yeah, I was told IC and discharged, no treatments, no advice, no pain relief, nothing. I am at my wits end with this pain, it was really bad yesterday, spent the day crying. I am more and more considering the ultimate solution, I cannot live like this forever

I am in fucking agony 24/7, you would not leave an animal like this

How the bliddy hell do you get these long term antibiotics and Hiprex? I am desperate, GP will not even see me face to face never mind prescribe anything🙄

For long term antibiotics you can go privately to Prof malone-Lees clinic which is what I did or you can try and get a referral to the Luts clinic at the Whittington, referral needs to be from a urologist or other tertiary doctor though, they won't accept a referral from a GP. They do different urine samples to the nhs so pick up more infections. GP can prescribe hiprex though.

Thanks for all your comments. @SuicideIsPainless I had awful terrible thoughts last night too. I just can't imagine living the rest of my life like this. Have been back to my GP today and persuaded her to prescribe me some estriol cream to try. I am 39 so still youngish but I'm clutching at sraws as to what can help me 😢

At least you can actually see a GP, mine are still not doing face to face apts. I have considered trying to change practices, but am scared I might get a worse one, (if thats possible)😂

@StanleyGoodspeed I would change GP practice if I were you. Have you been sent out some more bottles from focus labs to redo samples? I hope you haven't been charged again seen as it wasn't your fault they didn't arrive in time.

Yes, Focus sent the bottle out again at no cost it was Royal Mail's fault. I will do it on Monday and send in again, hope they get them in time this time around! such a faff, I should have been getting the results around now , so more waiting. I would not have the first clue about changing GPs, I have been at my practice my whole life and since Covid all the usual good doctors seem to have left. 😬

I am so desperate now with this pain that if this sample comes back showing something, I know my GP will just discount it so I am seriously considering trying to get to London somehow if the Harley St Clinic is taking on patients, I have no idea how much this would cost or where to start, I have never been to London. Are they taking on new patients?

I have been looking at maps of London and trying to work out to get there cheaply and a cheap B&B to stay in for a couple of nights! Its cheaper by coach I think although its a 7.5 hour journey going and 16 hours to come back!!!!😬

Anyway does anyone know if you are seen at the clinic and they agree its embedded UTI and recommend long term antibiotics, do they give a prescription or just recommend to GP as I know mine will not recognise it?

Another bad day today and this heat is not helping!!!!!!!!!!!!!!!!!!😡

@SuicideIsPainless I absolutely empathize with you. I had such bad pelvic pain a month ago I went to A&E, they didn't even scan me, didn't know and sent me home. I remember saying to my hubby I understand why people kill themselves when in pain.
I paid to see a private Urologist who was half helpful as incorrectly diagnosed me with PID but he did prescribe me a 3 week course of Cipro and it helped.
I still have odd pains but I think I have a recurring UTI so the ABs are helping.
I will fight an IC diagnosis as feel my pain is from UTI.
It's hard to get empowered when in pain isn't it. Is there anyway you could get to see a different urologist.? If all you need is a low dose of AB for a while you could get your life back. And if that doesn't work at least you know you tried.
Sometimes think GPs are so aversive to prescribing now the point is missed that the patient still needs help or an answer.

@StanleyGoodspeed sorry your stil in pain.
I would keep fighting to see a GP at your practice.
It's a good idea to go to HS and I'm considering it too but I'm keeping this as a last resort because if I can sort it out locally it's less stressful .
I'm lucky in that I've managed to see a GP but she referred me privately to see a urologist as I told her I couldn't wait 6-12 months.
I haven't done a focus test as my GP wouldn't collaborate and prescribe!
Microgen labs will prescribe but it's £ 330 just for the test !
The Urologist cost me £180 so actually was cheaper.
You could also see a private GP service and start again from scratch .
Unfortunately we re having to fight to get better and it's draining x

@StanleyGoodspeed I have been looking into going to Harley Street too. I genuinely don't want to be fobbed off with an IC diagnosis which is what they told me on Thursday when I had a cystoscopy.

I have never had a UTI before but when I went to the loo on 3rd July and there was so much blood with no other symptoms leading up to it I honestly believe its a nasty bacteria. Have had awful bladder pain ever since and 4weeks ago when I had another bleed my urethra has been sore and stinging also.
I'm not sure whether to do a focus labs test first and then pay privately to see dr anderson as she is local to me but it says that she is not seeing ne patients regarding utis but perhaps she'll prescbe me something if the results come back from her lab showing something?

I genuinely don't know what I would do if I have no infection. I can't go on living like this, I had to hand my notice in at work and spend most of my time lying down on the bed.

Harley street is £250 for the first consultation and £200 for follow ups. They will give you a private prescription and you can ask your GP to transfer this to an NHS one but if they wouldn't you can get your antibiotics and hiprex on the private prescription they give you but you will have to pay private prices.

The wait for an appointment at Harely Street may be a while but ask to go on their cancellation list, this is what I did and instead of having to wait three months I got seen in a couple of days.

@Panthereyes thanks for that info 👍

I understand, I'm still in pain from a UTI I had beginning of July as well. The spasms were awful this morning. Unfortunately this isn't my first foray into Chronic / Recurrent UTI.

One good thing is that due to campaigning by sufferers, this is becoming more recognised. There is now even a section on the NHS website regarding it, which even states how inaccurate the testing is, and more to come soon. The website is going to be detailing that we should be referred to chronic UTI specialists, however I am not sure how they are going to keep up with demand as there is currently only one clinic on the NHS in the UK (the London one discussed here), it is inaccessible to those of us in Scotland for example.

Another useful thing is to make sure you get the most accurate picture of what is going on, the urine samples need to be done in a certain way. Whether standard NHS testing, or the more accurate EQUC or DNA based testing. Need to make sure to be off all antibiotics and even supplements as long as possible beforehand or the results will be skewed, also to make sure the area surrounding is as clean as possible (wash around the urethra with really hot water beforehand and TMI but pull apart labia and insert a tampon, I think Dr Anderson recommends this, or it could be contaminated and grow or show vaginal flora), and make sure the urine is as concentrated as possible, so first morning or at least 4 hours in the bladder without drinking much. Get the first bits in as well, because even though 'midstream' is meant to be best, whatever is living in your urethra can depending on what it is, get to your bladder). Some people say that for the NHS testing if you can get a really clean catch sample without contamination, then leave it to sit for 24-48 hours before handing it in (don't tell them this), and it may be more likely to meet the threshold. Wouldn't do this with the better testing though.

For pain, AZO bladder pain tablets are good, and nerve blockers like Amitriptyline.

What really needs done is more research. It really is a horrible thing and so many women suffer with it nowadays, I think due to increasing antibiotic resistance (for example my infection shows resistance to many of the antibiotics I'd be likely to be prescribed), and stupid 3 day courses.

@Beurla I've handed in an old sample before and it did actually show something! It wasn't intentional but I'd taken the sample really early morning on waking and put it in my bag to take to an appointment but ended handing it in the day after !! I probably grew my own bugs .

Thanks to all those who contributed to thread, there is lots of useful info there!

I am doing my Focus Lab sample in the morning, fingers crossed. I was so tired last night, I have not been sleeping and the previous night only got 3 hours sleep, anyway I was looking forward to a rest but once I had weeeed before bed the bloody right sided bladder cramping started, more intense than ever before, and would not quit so I could not get to sleep, typical😬

I feel like I have been kicked in the crotch constantly, did anyone else have this feeling? as well as the pelvic bloating and tenderness and cramping

@StanleyGoodspeed yes, I've had these pains. I interpreted mine as chronic urethral pain as I'd had the UTI for so long. It's awful. The pain is more likely inflammation either from an active infection or residual from the previous one.
I've been taking a low dose of Cipro for 10 days and my pelvic pain is reducing .
This was prescribed by a private Urologist I saw.
I bet your hoping the focus lab test shows something .