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 I'm so sorry to welcome you to the UTI Club. Your saga sounds so similar to many of ours. I hope you get your CT results soon to put your mind at rest.

A wise poster said that where your tests can come back negative from the lab it might be because the threshold is so high. Mine always come back with nothing/mixed growth.

I have been using the uti tests you can now buy from Tesco (3x for £10) to confirm when I suspect I have a recurrence. Then I tell the GP and they automatically prescribe whilst asking for their own dip to confirm. Might be worth getting some then at least you can see whether you have leukocytes or if it's just inflammation without infection. It only picks up those and nitrates. Not blood.

@Lliria I was wondering whether you had tried antispasmodics such as you can buy for tummy cramps/IBS? It might be worth a shot?

I'm still feeling ok but still have the pain. On day 3 of amoxicillin.

Thank you so much for your responses. I have been taking d mannose now for about 2 weeks after reading about it on mumsnet! I don't know if it makes any difference to me at this point(Most people say its only good right at the beginning if you feel a UTI coming on). I did buy some obtibac womens probiotics yesterday so have started those. I have been off antibiotics for 3 weeks now and I felt so awful that yesterday I bought some nitrofurantoin 3 day course online so will start those when they arrive. I am sure 3 days won't be long enough but I want to at least try something! I was given the nitrofurantoin as the first antibiotic to try and it did stop the bleeding so maybe it might work and the trimethoprim and cefalexin were resistant? Have got another Doctors appointment on Wednesday so I'm hoping if the nitrofurantoin helps, she will prescribe a longer course. If it doesn't help, I'm not sure what else to do/try 😫

Hi, sorry your going through this, I have a similar time frame to you in fact mines now 8 weeks. Like you my symptoms came on abruptly. Cephalexin didn't clear my symptoms either and over the 8 weeks I've. Had 5 courses of Antibiotics 😞 the last one was Ciprofloxacin. Although my urinary symptoms have eased I'm now getting bladder spasms which are awful- like a bad period pain. 3 out of the 5 msu s have shown blood and mixed growth , it's like the main bug can't be isolated.
I saw a GP this morning as I had such a bad bladder cramp last night. She was said the cramps can last weeks if it's been a bad infection ( great )
Suppose to be going away Sunday , just don't know whether to risk it. GP gave back up ABs to take and I have meds for the spasms. Feel my confidence is low with my health now

It is awful that there are so many women suffering like this. Thank you for all your responses(sorry, I'm not sure how to tag people's user names!) My nitrofurantoin has arrived in the post this morning I have taken my first dose.
It's not nice feeling so run down for such a long time, I have been thinking maybe it's not a UTI and something more serious.
I too am hoping to go on holiday a week on Saturday so I'm hoping when I see the Doctor on Wednesday she can sort something for me to take 😕

Also re the Cephalexin, I work in Dentistry and we don't use this often due to its narrow spectrum of activity if a UTI has more gram negative bacteria then it's hit or miss if Cephalexin works. I think this is why my first UTI went to a kidney infection as I was given that AB .

Yep I too thought I must have something else but in reality it's a resistant UTI.
I've had a bladder scan and a CT scan all normal. I've had vag swabs for STI all normal. If Nitro works for you try getting a longer course. I think once bacteria gets stubborn we need a 10 day course.
There are some ladies on here who had appointments with private GPss online and got what they needed.
Most GPs working within NHS protocol will give a short course but the irony of this is that we end up taking more anyway as I don't think 3. Day courses work.

For those of you due to see a GP about symptoms not going but tests being negative this link may be helpful. https://cutic.co.uk/your-next-gp-appointment/ good luck I was also told that the infection had gone and I was left with inflammation. I never got my GP to take it seriously and had to go to the cuti team in Harley Street. Leukocytes are white blood cells and are a sign of infection, why would there be white blood cells on dipstick if there is no infection?

Interesting that you say that about the cephalexin. My Doctors reasoning for trying me with that was that she thought it might be an infection with my kidneys seen as there was a lot of blood. I did say that my pain was definitely in the urethra and lower bladder though 🤔my concern is that I've been off antibiotics for 3 nearly 4 weeks now and I hope that it doesn't make it more difficult to budge.
How is everyone else feeling today?

Thank you

Is the nitro kicking in yet?

I've still got pain but not too bad. Deduced that paracetamol works not ibuprofen bizarrely.

I gave got paracetamol/codeine and two codeine (and my d mannose and probiotics) packed in case it all goes Pete Tong - and told my friend she knows what to do if I develop sepsis! Only going for a week and going to take it easy. Just breakfast, beach, dinner, games, bed. Just me and my friend and the kids at her house in France.

@Lliria have you decided whether to go away later?

Sorry meant to quote @Pengydog

I am rebooking my channel tunnel crossing to Sunday, then will drive thru France into Spain. Going to my mum's so will be a chill week like yours !
But I'm still getting anxious about going because of recent UTI 's !!
Suppose the rest is what I need and if something happens well the French and Spanish medical centres can't be worse than ours - surely 🤔!!

@LittleMonks11 (I've learnt how to tag people!) For the first time in 6 weeks, this morning,I have had a comfortable wee! No stinging and came out at a normal flow. Still have the horrible dull, heavy ache in my bladder but maybe the nitrofurantoin seems to be working?! I really hope so. Trouble is, I've only had 3 days worth and I'm not seeing my Doctor until Wednesday so I'll have another couple of days without any antibiotics.

@Pengydog sounds like the Nitro is working. I get about the bladder ache.
I finished my ABs over 4 days ago but Im. Still getting bladder cramping at odd times. I think it takes a while for the inflammation to settle sometimes.

@Lliria hope you have a lovely trip and that your bladder spasms improve. Maybe a change of scene will do you good and help take your mind of things. ☝
I was wondering if any of you ladies have had low dose antibiotics prescribed but for over a longer period of time? I wonder if when I next see the doctor to perhaps suggest this or am I likely to be just given another 3/5day course?
With regards to my current antibiotics I have, which I bought off line myself, I'm wondering whether after today to:

1. Just have one tablet a day so one Sunday, one Monday and one Tuesday which covers me till Wednesday when I next see my doctor who will hopefully prescribe me more or do I
2. Take 2 tablets tomorrow as normal, and then I'm left with last one to take on Monday morning but nothing in the evening or on Tuesday so I'll be having a break of no antibiotics for a day and a half if that makes sense? What do people think? 🤔

@Pengydog medication has a half life so when you stop taking it can still be in your system. You could Google it for Nitro. I'm not sure what you should do as a dose needs to be constant I think.
Is there any chance you could speak/see someone before Wednesday ?
OOH doctor - that's what the system is there for and they potentially will give you something.
I know when I was desperate a few weeks ago I took a 3 day course of Norfloxacin that was a left over course from some I had when lived abroad. My symptoms returned 2 days after I'd taken the last one.😬

So glad things are improving @Pengydog my gut would say take the ABs as prescribed. I think they don't suddenly stop working the day you stop and reducing the dose might make them less effective. I asked for 7 day courses of ABs after 3 day didn't seem to work for me. My last few prescriptions have been for 7 days. But here we still are 🤷‍♀️

I hope the spasms subside @Lliria and that you can relax and enjoy your holiday. As @Pengydog says a change of scene and pace might help.

I got a random letter from hospital on Friday saying they'd been trying to contact me to arrange an ultrasound I'd been on the waiting list for. It didn't even say what for but I presume it's when I pleaded for a bladder ultrasound ages ago. I ended up having a sneaky bladder scan from a kindly radiographer when I was referred for the pelvic pain for a uterine one. All was fine in uterus and bladder. I'm still going to take this one up though as that was last Dec.

I'm up at 4.30am tomorrow to get to Gatwick. Pray for me! 🤪

How you going @Honeybeebear ?

@Pengydog glad you are starting to feel better.
I would also say take as prescribed- I believe my infection grew as I had to stop a course early and had gaps between starting antibiotics.
I think not finishing the full course of nitro I had initially and having a gap between this and the next antibiotic was what made my symptoms prolonged and keep returning.

could you try the GP on Monday?

@Lliria really hope you enjoy the holiday. I found that being away from it all helped me a lot, but I did feel nervous about being away and it returning. I think the health care will be just as good in France/Spain as here if you need it.

@LittleMonks11 I’m feeling a lot better and more positive thanks! I’m getting the occasional pain/ twinge but less and less. I’m very tired still though. And if I forgot to drink water for a couple of hours I really start feeling it. I think my bladder is going to take some time to heal.
Hope you have a lovely time away!

Thank you guys for all of your replies and advice. It's so nice to feel that you're not alone when feeling like this. I've not had a great afternoon/evening pain wise but keep reminding myself it is early days. It doesn't help that i keep thinking to myself 'well what if this antibiotic doesnt work? What will i do then?'.
I'm going to take the nitrofurantoin as prescribed which means tomorrow will be my last 2 dose day. I think like you say @Honeybeebear it may be worth trying to get a GP appointment on Monday.

Depending on how it all pans out the next couple of weeks, if I'm no better, I'm going to make an appointment with Dr Catriona Anderson a Urologist who I have heard good things about and happens to be based in the Midlands where I am.

@Pengydog the embedded uti specialists do not recommend a lower dose longer course of antibiotics. A low dose may keep symptoms at bay but they are likely to return once the prophylactic course stops. It os also more likely the bacteria will build resistance to the antibiotics.

Catriona Anderson knew the professor who opened the cuti clinic i went to in Harley Street. I know he thought very highly of her indeed and he totally revolutionised my quality of life so I’m now symptom free and just take an antiseptic he prescribed called Hiprex. My life was blighted for about 10 years. The last straw was when I was diagnosed after a rigid cystoscopy, with something called cystitis cystica. My whole bladder was full of ulcers. On the scan pics it looked utterly awful. All my local hospital would offer was bladder instillation. At that point I saw Professor Malone-Lee, who said cystitis cystica isn’t a condition in and of itself, just what a bladder can look like after years of infection that hasn’t been properly treated.

@Sugarplumfury I'm so sorry you went though so much discomfort for so long. Do you take hiprex everyday or is it for when you have have a feeling of symptoms coming on?
Other than the first couple of days of blood and urgency needing a wee my issue for the past 6 weeks is just a constant dull ache right at the bottom left side of my bladder. A bit like period pain, but the pain is there all the time. Plus slightly uncomfortable urethra which has improved in the last day or so. Most people on here seem to have had issues with urgency and stinging but not me 😕

Pengydog. I take Hiprex 3 times a day all the time. I have antibiotics in for if there’s a flare. But those are few and far between now. It’s such a wretched thing to suffer from. I never take for granted going out for an afternoon and not needing the loo. Before I got the infection under control, I used to go about every 30 mins and as soon as I’d got up off the loo, felt as if I needed to go again. Everyone suffering has my utmost sympathy.

@Pengydog mines been similar. Started 8 weeks ago with classis UTI symptoms but for the last 3 weeks supra pubic/bladder pain. I had an episode last night that probably lasted 20 mins, awful intense burning cramp.
I didn't go on my holiday today, couldn't face it.
I went to a private Urologist a couple of weeks ago and he " suggested " it was PID. My GP did swabs to test for it and they came back normal
I never had this pain until I had the UTI. It has to be bladder spasms but omg so painful. GP said these can last months 😭 so you have my sympathy