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.

Lliria

I am so pleased you for that someone finally listened , what is your private Urologist's name and where is he? 😂 we will be queuing up😃

Yes I am still in pain, it never really goes away, lying down flat is the best position and sitting down is the worse. Its like a burning pressure all over lower abdo/pelvic area and on the right side its like someone is twisting a red hot poker in there. 🙄

@StanleyGoodspeed Hi, I live in Lincolnshire but the Uro is Mr Dawson at the Fitzwilliam in Peterborough. You probably don't live near me but thought I'd tell you anyway ! I did ask him about private labs but he said didn't know enough about them to advise. I ll stick with him for now.
Your burning pain isn't right. I know I had this right up to a couple of weeks ago
I went to OOH with mine and the nurse thought I had a pelvic infection and put me on Metronidazole but couldn't tolerate the side effects. I'd also had a swab taken that had shown Gram positive cocci.
Have you had any swabs done ? You could go to a GUM clinic for these.
I still get odd pains but has reduced after taking Cipro daily for 2 weeks.

No swabs done

In fact the only people who has actually seen me in person in this whole debacle is the urologist who did the cystoscopy who said all looked fine, although 48 hours after that I had ANOTHER raging fever and an A&E doc when I had suspected sepsis but I just had bloods done, everything else through GP is just done via phone

@Honeybeebear Hi, the Uro suggested a cystoscopy but next week I'm just having a Uroflow test .I think I pee into a container then they scan the bladder to make sure there's no residual urine left, as this means incomplete emptying.
I've got to do another sample for their labs. I've got 1 more AB to take of the 2 week daily Cipro to take. This has kept my symptoms at bay so I'm almost anxious about stopping them ! I recall you saying the same when you stopped the Nitro !
I think the bladder sensations your getting could be irritation as I'm still getting some odd pelvic cramps.
The Uro I saw didn't recommend sending samples to private labs as he said they would grow more bugs anyway , but he did admit he didn't know enough about them to advise.
His theory was if a UTI keeps coming back I need a long course of daily ABs .
I asked him to refer me back to the NHS for the cystoscopy as I'm self paying to see him as don't have med insurance.

@StanleyGoodspeed I think when cystoscopy is done their looking for cancer markers and inflammation and ruling out the bad stuff.
That doesn't mean your not getting a low lying infection .
Hopefully your focus lab sample is analysed.
I would push to see a GP. Can you not see your practice nurse ? Sometimes they are more clued up

At the Urology apt they dipped the urine and said it was ok, but I now know that those are not very reliable

I am going to try and get another phone apt with GP, (thats all you can book and they then decide if you need an actual physical apt, they have always said no so far) and if I have results back from Focus I will try to see what next steps there are, I just cannot carry on like this

My samples are at the Lab! 😁

Just fingers crossed now that they are still usable, its only a day late this time rather than the 6 days late last time

@StanleyGoodspeed yay thank goodness for that! I'm sure the samples should be fine for them to use.

@Lliria I'm feeling very nervous, I hate busy places so going to London will be a big adventure for me- I think the last time I went was about 20 years ago 😦

@bluestripeymug I will definitely give an update to you all about my trip good or bad. Will have to write up a little mini review for you all!

Thank you to everyone for all your responses and advice, sorry if I've not tagged you in- there are so many of you! 😊

Pengydog

Please post a review and update, I might be following in your footsteps at some point ! I also do not like busy places and have never even been to London, its about 250 miles I think, but I have been looking into how to get there and where to stay if I need to. Would also try and have a bit of sightseeing but I have no idea if Harley St is anywhere near Buckingham Palace for instance, I would like to see that, or how to get around London, maybe taxis?

Hi all. Still here. The abdominal pain came back, went away, came back etc etc. I didn't take the antibiotics but I stopped the Vagifem because I freaked out about the abdominal pain side effects.

So I had a scheduled GP appointment this morning with my own GP who I've seen only once in this last year of six AB courses and recurring abdo pain - and of course I am in a no pain zone today (unlike Friday when it was bad). But she was great.

I expressed my concerns about a cancer not being picked up so she went through everything. All reassuring as I have had 3x full bloods, 2TV scans, 1xbladder scan, FIT rest, HPylori, ovarian markers the lot. I have no other symptoms.

She basically thinks I have menopause related non bacterial cystitis and so while the ABs help a bit for a while with the inflammation in the bladder and areas they are for bacterial infections.

She thinks it's definitely menopause related so I'm going back on the Vagifem and if I get a flare to take 3 days ibuprofen 400mg for the inflammation. And review in 6 weeks. I had always been trying paracetamol or paracetamol and codeine in case it was stomach issues - which did bugger all.

She also is sending off the wee to the lab I took in this morning anyway. She said it would explain why they've never been able to grow any bacteria.

I've gone decaf coffee, and not overdo the wine. She said alcohol is ok so long as I stay hydrated and don't overdo it of course.

So I'm hopeful that she has an idea and we have a plan. She said if carries on or gets worse or any new symptoms then she will look at a referral in 6 weeks. But she definitely thinks it's inflamed bladder due to thinning despite me not having the classic cystitis symptoms (don't get burning) but do get frequency.

I'm reading all the updates and new posters and sending you all the very best. Hope everyone is ok x

In August 2019 I got a UTI which was treated by a normal antibiotic course.

The symptoms didn't stop even but 20+ samples showed I didn't have an active infection.

I was suffering from urgency, burning, abdominal pain and the usual UTI symptoms.

Completely accidentally I realised that Fexofenadine or Lortadine antihistamines stopped the symptoms. I already had a gynaecology appointment booked with Dr Patrick Campbell (in Northern Ireland) thinking that I had IC.

He confirmed that sometimes, after a UTI or medical issue including menopause the bladder can flare up and essentially go through a histamine flare.

11 months on I have stopped the antihistamines and I'm completely back to normal.

Taking a daily antihistamine allowed my bladder to recover from the antibiotic use. I did have to take the antihistamines for an extended period of time but both Fexofenadine and Lortadine can be used daily without issue.

I just want to share my story because I remember in my darkest hours while I was in pain, wondering if the constant burning and pain was my life. Please try an antihistamine if you have no luck with other treatments. I did have to trial a few types until I got something that worked completely but Fexofenadine or Lortadine worked perfectly for me.

Best of luck to everyone on this thread. I think it's easy to not take bladder issues seriously and nobody realises how debilitating it is.

I go back to the gp tomorrow and will have to report no improvement after 7 days of antibios. I can see my lab results online and everything says negative or within normal limits and “traces” of leucolytes” not sure if that is how it’s spelt.
Feel so unwell but have urology in 7/8 weeks so will just hobble around til then. Still planning to go to USA and Far East and hopefully whatever I’ve got won’t see me off when I’m overseas!
Ive done far to much googling and have convinced myself that if it’s not another prolapse it’s bladder cancer.
Ill report back after my appt tomorrow

That's really interesting. Thank you for sharing and glad it's all come right again for you.

Good luck

@LittleMonks11 hey, I'm still here too ! That's really interesting, but did any of your samples show a mixed growth or were they negative ?
I'm post menopausal and I think it throws up different possibilities.
Atm I'm between Urology appointments and he thinks I have a resistant UTI as I have mixed growths with blood.
I too have had pelvic pains since July and I'm starting to think it's nothing to do with the UTI s but a pelvic floor problem.Think Ive got so tensed up about bladder issues I'm squeezing my pelvic area !
I hope that your GP is right in a way as this will be your answer.
I've noticed if I have a glass of wine I'm relaxed so don't get obsessed about my bladder!
I also think all the ABs I've taken have caused a sort of IBS.

I think I had one mixed growth but it was viewed as contaminated. So just general gubbins from the pot. I also thought for a while I had a pelvic floor dysfunction (last winter) it was one of my theories! I also find myself tending my entire pelvis/abdomen very often and have to intense. It doesn't help neither does all the anxiety from not having a firm cause. Has anyone E suggested topical oestrogen to you? My GP said low oestrogen can definitely cause inflamed bladder issues. As others on this thread have testified.

Interesting about the Loratadine, I have been on it for 2 years now as I developed eczema but it does nothing for my pelvic/ abdo pain😓

@LittleMonks11 yes not knowing what's going on causes tension in itself.
I've been using topical and vaginal estrogen for 2 years so at least that base is covered !

The not knowing what’s going on us so horrid
Saw the doc this morning and all lab results were clear except for blood traces and high WBC. He is going to write to the urologist to see if it can be brought forward as they need to check for bladder cancer. Todays urine sample was the same.
Im trying to stay positive as it might be something else.
Ive not got much stinging, it’s the constant pressure, even sitting down which is so debilitating. Feels like a balloon filled with lead is pushing down on my urethra.
Im not googling anything any more and going to carry on with my travel plans from Thursday.

Good plan to stop Googling - am I hope your have a great trip despite everything.

Ahh ok 👍

Guess who stupidly had a long bubble bath last night and guess who was awake at 4am with abdo pain 🙄

I know I shouldn't have them but I was sooooo tired and it was so nice at the time.

Hi ladies, I took a trip to Harley street clinic yesterday and thought I would give a review as promised.

We ended up driving down in the end as train fares were astronomical. The journey wasn't too bad, we set off at around 6am and arrived around 9.45am which gave us time to find parking in a Q parking just around the corner from the clinic.

The actual clinic is very fancy, plush hotel style. The lady on the front desk was a little abrupt but not rude. She informed me to pee into a normal white top urine sample container and to drop it off into a yellow waste bucket by the front desk when completed!

I then got called in very promptly at 10.30am which was my time of appointment. I saw a lovely Doctor called Edward Harvey (bit of a dish!). He asked lots of questions about what symptoms i had and past tests, antibiotics I had tried etc. He then said my urine sample showed microscopic blood and leucocytes which means there is an infection. He believes I have an embedded infection. I have been prescribed 3 months of cefalexin 500mg 4 times a day and hiprex to take twice a day. He said it is important to have a strong dose and for a long time, these embedded infections need aggressive treatment. He would like to see me again in December to check my urine again and review treatment plan but I'm really hoping I won't need to and this new prescription will sort things out.

Now my task is to try and persuade my GP surgery to convert my private prescription into an NHS one Dr Harvey said some GPs can be funny about this. So I have an appointment this afternoon with a GP who I haven't seen before (the nice GP I normally see hadnt got any appointments available until next month) so I'm hoping after I've explained everything I've been through the past few months she will kindly transfer my private prescription to NHS for me. Goodness knows how much it would be to pay private costs 😕

It’s not as expensive as you might think actually. I had a private prescription from Microgen Lab for antibiotics for a urine infection and I was surprised that it wasn’t that costly. Just an option if your GP gets sniffy x

So glad that you finally got an answer and some treatment sorted.

Good luck with GP, I am not sure that mine would be so understanding, considering they think it is all in my head😂

My GP wasn’t happy that I’d been to a private lab but I needed to see if there was an infection that NHS testing wouldn’t pick up. One infection wouldn’t have shown but two others would have on standard testing. She prescribed antibiotics but a very short course which I’d had before and that I knew wouldn’t shift the infection so I had a private prescription from the pharmacy that the lab used and as I say, it really wasn’t that expensive. X