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.

This has been an interesting read for me as I'm going through something similar. 2 week on / off UTI symptoms most concerning is episodes of fresh blood which seem to come and go. Had 6 days of nitro which have stopped yesterday but yesterday I had loads of blood again after stopping for a few days and then stopped again today even though I've not taken any antibiotics today. Endless twinging, period type pain, poor stream and discomfort when I go. All of yesterday I had a really anxious, couldn't sit still twitchy feeling like I could wet myself at any point but didn't really need to go as often as it felt. But gone again today.

I'll be back to the GP tomorrow. I don't know if this is a UTI or a really crap radiated bladder from pelvic radiotherapy a few years ago.

I'm sorry so many of us are suffering.

@Honeybeebear Hi I'm glad your feeling better. I've just started to feel normalish over the last week,still knackered tho.
I've had a couple of wines over the last week and it's been ok.
I still have the odd bladder twinge. When I think back over the last few months it seems surreal !

hi, hope everyone is doing ok

I have booked an appointment at Harley Street Clinic, its for 3 weeks' time

Eeek, feeling bit apprehensive now, I hope that they can help me

Now have to look into booking trains and a cheapish B&B😀

@StanleyGoodspeed That’s brilliant news. Hope they can get to the bottom of this for you. Do post updates x

@StanleyGoodspeed I'm sure they ll be able to help. It's a positive step and you certainly weren't getting any help with your GP. Good luck

How's everyone? Glad things are improving for you @Lliria and @Honeybeebear

Great news @StanleyGoodspeed really hope they can help.

I looked up my last sample sent to lab and of course 'no growth'. If my GP's theory is correct (non bacterial cystitis related to low oestrogen) then I'd been chugging antibiotics like smarties for almost a year for no reason.

Feeling much more like my old self. And a lot less stressed. Getting the odd mild pain twinge but I feel I can pinpoint the cause now.

How did you get on at the GP?

I still so bloody bloated and in pain

I noticed lying in bed I can feel like a string of pearls on my lower right abdo/pelvic area, the yellow areas on this diagram, this is where my worst pain is, I wonder if my lymph nodes are swollen due to chronic UTI infection? very odd😕

@StanleyGoodspeed it's a possible I suppose. Are you still getting urinary symptoms ?
Im still getting some pelvic pain. I have a pelvic scan next week after waiting 9 weeks . I'm not really expecting them to find anything tbh.
My urinary symptoms have calmed. But now I have bad IBS cramps and bloating from all the ABs I took over the summer - can't win 😞

@LittleMonks11 glad your feeling better too. I too have som lingering symptoms and IBS from all the ABs I took.
If your GP is right then you have a clear treatment pathway which is good.
Like me you can't " untake" the ABs you took but there's ways to put some good bacteria back ! I'm taking pro biotics for female health and having a glass of kefir daily. My urine samples did show mixed growth but No bug isolated !
I'm back to enjoying the odd glass of wine 😄

hi all

my symptoms are much the same, pain in pelvis, smelly urine, dribbling (classy)

My apt at Harley Street is next week, getting bit stressed now, sorted out a hotel just the train to book now

I will update when been

@StanleyGoodspeed hi, have wondered how you were.
Good you are going to the HS appointment and I understand why it feels stressy.
If your GP had been more pro active at helping you then it could have been different.
I have seen a private urologist a few times now and have a cystoscopy soon. I shouldn't have had to pay for this but the wait was 12 months in my area for non urgent. The urine cultures I had done privately shows no growth now.
My urinary symptoms have settled but still feel knackered and all the Antibiotics I took have caused IBS symptoms to flare so I now have pelvic pain from that.
I feel health anxiety creeping in now about bladder issues .
I really hope you get sorted. If you have smelly wee then that sounds like an ecoli bug.
Best of luck and let us know.

I’m still hanging on for my nhs urologist in Nov but if it’s cancelled or postponed I’m going private. Had a whole week recently where my symptoms were almost gone - it makes it even worse when you wake up and they are all back. Doesn’t seem to be any pattern to my symptoms.
Ive convinced myself that I have bladder cancer and feel so down at the moment.

@Storynanny1 when did you get referred ?
I didn't want to go private but my GP sort of nudged me into the private domain by saying I'd wait 8-12 months to be seen. This was back in July and I'd already had a recurring UTI for 6 weeks at that point. Apparently that wasn't classed as urgent ! Well it was urgent to me.
It does get you down , I still don't have definite answers as to why I kept getting symptoms but I'm getting checked for all the serious stuff. If my cystoscopy is normal then the urologist thinks I had a low lying infection for a while. He s happy to put me on a low daily dose of antibiotics if he thinks necessary.

I think it was about June or July
Thing with going private will be that each test, scan, mri, camera etc will each cost as well as the appointment.
I just hope my nhs won’t be cancelled. Presumably I’m not being classed as urgent or on the 2 week cancer pathway. My November appt is “one stop urology” so I’m guessing it will be all tests on one day. When it works , the Nhs is brilliant. Ten years ago I had a one stop breast clinic appt to investigate a dodgy nippple and came away by the end of the day with the all clear - no anxious waiting for results
Another night of 2 hours sleep, wake up , wee and repeat.

You're not on antidepressants are you op? I'm a uti sufferer and had all the symptoms of one but it was a rare side effect of the antidepressants I was on stopping me from emptying bladder. They quickly changed the type and it got better. Would have sworn uti.

@Storynanny1 ok. Was referred in August but straight to private as the routine waiting list in Lincolnshire is very long. I couldn't be fast track referred even though I had two episodes of microscopic blood in urine.
So far I have paid for 2 consults , a uroflow test and scan. I also have to pay for cystoscopy. I could have been referred back to the NHS for this but again would have been a wait.
My GP also did an urgent referral to gynae but this was refused by the hospital and I now have to wait 4 months- it's annoying and disgusting

Hi everyone

I said that I would update, I went to Harley Street!

I am exhausted! It took 2 trains to get there, we stayed for 2 nights at Holiday Inn, nice, clean hotel not too expensive for London I don't think and about 10-15 minutes walk to Harley Street and close to Euston train station. Spent the morning of my appointment sightseeing as we have never been to London before, went on the Eye, walked over Westminster Bridge, had a look at Big Ben, the Houses of Parliament, Westminster Abbey, such beautiful buildings. After a lot of walking we then went to appointment.

Had to do a sample and then I saw Dr Harvey, he is really nice and asked loads of questions. My sample showed high white cells and epithelial cells so he said there is no doubt a urinary tract chronic infection. I am to start high dose long term antibiotics and Hiprex. I think he seemed confident that this can be sorted. I know it won't be a quick fix though, I have had it over 14 months so might take a while.

So finally a reason for my pain and such a relief to get answers and a way forward at last, I have to go again after Christmas for follow-up, but will just stay overnight and come home straight afterwards to try and keep costs down. It is expensive and a hard journey for me but worth it rather than just being left to fester in agony at home for the rest of my life! I feel grateful that I could go, we are not rich by any means but will just have to cut back in other areas.

Due to all the walking and lack of sleep I am so sore , my fibromyalgia and arthritis are playing up as well as my bladder pain, I just want to go to bed and turn my electric blanket on but I have a formal event tomorrow so need to just dose up on painkillers and power through. I hope I can start the antibiotics at the weekend as I think the pharmacy near me will have to order the items. Then I am having a much needed rest at weekend!

@StanleyGoodspeed glad to hear it went well, it certainly is draining though. I saw Dr Harvey and he is lovely. Hope you start to feel better once you are on the antibiotics.

So glad to hear you’ve got to the bottom of all the discomfort and that your treatment will start soon. Xx

thanks both, chemist confirmed the drugs should be there on Saturday😁

@StanleyGoodspeed I'm glad you got some help at last . It shouldn't have had to come to that but at least you have a chance to feel better.
Did you ever home test your urine with the strips ? As that may have shown the white blood cells ( not as good as a microscope though )
Do Harley Street send a report of your visit to the GP. ? If it was me I'd want them to know !!!

@StanleyGoodspeed what antibiotics did they prescribe for you ?

Hi All,

how is everyone doing?

@StanleyGoodspeed glad the appointment was helpful.

I’m still taking the d mannose daily, I’m worried it’s upsetting my tummy though. Could be all the antibiotics I took in July/Aug but that was a while ago now. I’m too scared to stop taking the d mannose to find out!

@Honeybeebear Hi, good to hear how your getting on !
I'm probably at the same stage as you really, I'm taking probiotics for female intimate health plus cranberry capsules and d- mannose ! I'm doing everything I can for prevention. A Urologist I recently saw recommended all these supplements.
Since I stopped the ABs at the end of August I've had a massive IBS flare up so I think my microbiome has been affected. I think I get a bit bloaty with the D- mannose but I ll keep going with it !
I'm still a bit anxious now and again about having another UTI but I figure I'm doing everything I can so if it happens it happens.
I am booked in for a cystoscopy due to my samples showing microscopic blood and my age (57) but tbh I think I'm ok now so I doubt if anything will be found.
The Urologist I saw thinks it was a low lying infection not picked up .