Page 12 | UTI Symptoms not going away & scared

Lliria · 24/08/2023 17:05

@Tableaufox Hi, I know what you mean and think others could relate also.
If I need a wee shortly after having one my mind is on red alert !
I also think some of the worry comes from getting treatment if you need it- getting GP/nurse appointment or getting ABs. The sample sending is a pain as well as it seems GPs are adamant that you have to prove you have an infection.
But saying all that , I'm sure you ll be fine and as more time passes it will be easier

Beurla · 24/08/2023 21:53

I get the tiredness thing too. I think it's from the antibiotics and from our bodies fighting the infection. The antibiotics only do so much, our innate immune system has to do it's part at finishing it off, and the infection itself makes your body run down. The antibiotics deplete minerals and our microbiome.

Cipro and Levofloxacin don't affect microbiome so much, but they are really bad for our mitochondria, which is huge for our health. They affect bacteria mitochondria, that's how they work, but also ours.
Amox and Co-Amox, Cefalexin etc, destroy our microbiome, which more and more research is saying we need.
Trimethoprim is bad for our Vitamin B and Folate stores and absorption. Again, this is how it kills bacteria, by interfering with their nutrients.. and also ours!
Nitro is quite hard on the lungs and kidneys/liver I think, and also possibly some vitamins, and doesn't kill bacteria just stops it's growth, so we have to do the rest.

I always feel ill at first when on antibiotics, then more energetic when on them a couple days, but crash with fatigue afterwards.

When you say the staff don't seem bothered about the amount of antibiotics you've had, they would be bothered if you developed C Diff, or a highly resistant strain of UTI which got bad enough that it passed their testing, and landed you in hospital with fever (the NHS threshold for 'how many bacteria comes back a UTI on their tests, is literally based on a study of pregnant women with severe kidney infections in the 1950s!). Some strains are not that deadly, they aren't able to ascend to the kidneys, or cause fever, they just live in the bladder and cause pain and untold suffering for us. There are even some E Coli which colonise the bladder without causing issues (I think this is the basis of some UTI vaccines). It's the same as any infectious disease. This is why prevention is key.

Yeah, even if you feel mentally 'aware', it's not that it is just in your head or anything! I had no UTIs for years, but I could get anxious even remembering the pain! Recently I went to the chemist for antibiotics, and the pharmacist had such a look of empathy on her face that only a woman who'd had a really bad UTI could know. I do family tree stuff, and these infections could easily kill before antibiotics, yet now it's treated as so minor. Look after yourself as best you can when recovering.

Yes, not being able to get treatment, unless we 'pass' an already proven inadequate (and even admitted on their website) test - of course this will cause anxiety! There should be campaigns about this!!

Apologies for the long rambling post, it comes from nearly 20 years of this.

Beurla · 24/08/2023 21:58

I don't mean to scare anyone either - vast majority of infections do clear up completely once the correct antibiotic is found, and then prevention can prevent a new infection occurring. I think few get embedded, or else most women would have an embedded UTI, and that is not the case.

Lliria · 24/08/2023 22:22

Beurla · 24/08/2023 21:58

I don't mean to scare anyone either - vast majority of infections do clear up completely once the correct antibiotic is found, and then prevention can prevent a new infection occurring. I think few get embedded, or else most women would have an embedded UTI, and that is not the case.

I think that's been my issue right from the start- not getting the appropriate AB.
If only the first sample had isolated a dominant bug. I feel I've had everything thrown at mine tbh. Now I'm in that cycle of some samples coming back negative because I've been on ABs. I've just struggled through a Cephalexin course which was making me nauseous but feel it hasn't worked, I feel feverish and my bladder pain is back. I have now started my low dose Ciprofloxacin to be taken daily for 3 weeks !! A Urologist prescribed this 3 weeks ago but GP wanted me to have a treatment course of Ceph first as blood in urine. At this point I don't know what's working, am sort of wary of the Cipro as a strong AB but what else can I do but try.
This is driving me nuts, if I sent off another sample it will be negative 😖

StanleyGoodspeed · 25/08/2023 11:34

So glad that I found this thread!

I just cannot believe that there are so many of us suffering like this. I am another one left in constant pain. I have read about embedded UTI but as the NHS do not recognise it, I do not know what else to try. Might be epic, sorry

I have never suffered from an urinary problems until last year, I awoke a couple of hours after sleep feeling like my pelvis was about to explode and desperately needing a wee. I went a few times but got no relief, I was up all night on the toilet feeling like I needed to go but just a little trickle coming out. I started feeling a bit ill and when I finished weeing I had a strange shivery cramping feeling that went all the way up my abdomen into my chest area.

I rang the GP first thing in the morning and asked for an apt as I thought that I had my first ever UTI. The receptionist said they do not give appointments for that and just to drop a urine sample off. I did this and then got a text later that day saying my sample was positive (it was e.coli I found out later, had blood and leucocytes in) and a prescription had been done for me.

So started the nightmare.😰

I developed a temperature, aches, shivers, intense pelvic pressure and pain. I was given Nitro 3 day course, no improvement at all, I rang drs again a couple of days later and was told sometimes 3 days is not enough so they gave me another 3 days. Same again, no improvement so was given another 3 days after that. No difference. I dropped more samples off, I think at first they showed something but after that they just said that they were clear.

I had to cancel a holiday I was in so much pain. A couple of weeks later I ended up with very high fever and shakes and chills and ended up in A&E after ringing 111. They gave a week of Cephalexin. Felt bit better and the temperature came down but it did nothing for the intense pelvic pain. Had a bladder ultrasound, normal. I managed to finally see a GP there was some blood so they sent me for a cystoscopy which was clear, and the urologist said I had interstitial cystitis, but about 48 hours after the cystoscopy, I developed ANOTHER raging fever, chills, back pain and shakes (could not make this shit up) I rang 111 as it was a weekend and the doctor thought the cystoscopy might have reactivated some infection, even though the urologist said no infection or stones and antibiotics not required. The 111 doctor prescribed me Co-Amoxiclav for 5 days. I actually stayed pain free for 2 weeks after taking that but it all came back and I still have the awful pain to this day.

It has been a whole year now. Docs won't help any more, I am left not even with pain relief, even if it is IC I am just left in agony. I take paracetamol but does not touch it. I do not really have much frequency any more although I have the bladder cramping and cannot tell sometimes when I am weeing, and I cannot stop it midstream any more and I could before. Sometimes if I am bursting it just comes out, I cannot stop it. All GP have offered is an antidepressant, the urologist wanted GP to investigate my recurrent fevers, I have had blood tests and stool samples and all normal and GP just said that they cannot see anything wrong with me. (on a phone apt, cannot have face to face)

My lower stomach is bloated, tender to touch, I cannot sit down without being in agony. Even touching against the kitchen worktop has me wincing in pain. Sometimes the pain and pressure in pelvis is so bad, it makes me nauseous and I want to vomit. In this whole farce, not ONE medical person has actually examined me in person and felt my abdomen. I had a really bad day painwise last weekend and when I weeeed there was pink on the tissue so there is obviously a problem somewhere. It is not period related as I am in my 50s and had a hysterectomy many years ago. My last attempt now at getting some answers is that I have ordered a more specialised urinalysis and microscopy test from a private lab but even if this shows something I will have a fight on my hands to get any more treatment so not sure where to go from here. I think the docs are fed up of me now. I will not lie, I have been having some bad thoughts that this is my life now, constant pain and pressure in pelvis and its just so unrelenting, there is no relief from it.

I am sorry that there are so many suffering the same. I just cannot help feeling that before Covid, I could have seen a GP at the start and been examined and given a longer course of appropriate antibiotics, I am not convinced that 3 days is enough.

Maybe this could have been avoided.

Pengydog · 25/08/2023 13:42

Hi guys, I've been a bit quiet on here the past few days so thought I'd update you on what's been going on with me.
On the afternoon that I last posted I went to the toilet and had another sharp stinging in my urethra and passed a lot of blood. I had to wear a sanitary pad for the next couple of days as after each time I went to the loo I was trickling about a teaspoon of blood out my urethra 😞
I have been fast tracked for an appointment with a urologist at the hospital and have a telephone appointment with them on Wednesday morning. I have still got awful pain in my bladder and my urethra is sore/stinging. My results from my CT scan came back and show no kidney stones. I was given 7 days of ciprofloxacin and one doctor said to stop them as they aren't making any difference, but spoke to a different doctor yesterday and they've given me another 7 days worth as I said I don't think 7 days is enough anyway. I don't know, maybe I just feel like at least I'm trying something if I am taking something?!
I'm feeling very down and in pain, worrying what could be wring with me. I'm thinking I may have to hand in my notice at work as I already had 3 weeks off and have had the summer holidays and I'm still no better.

Tidsleytiddy · 25/08/2023 13:49

StanleyGoodspeed · 25/08/2023 11:34

So glad that I found this thread!

I just cannot believe that there are so many of us suffering like this. I am another one left in constant pain. I have read about embedded UTI but as the NHS do not recognise it, I do not know what else to try. Might be epic, sorry

I have never suffered from an urinary problems until last year, I awoke a couple of hours after sleep feeling like my pelvis was about to explode and desperately needing a wee. I went a few times but got no relief, I was up all night on the toilet feeling like I needed to go but just a little trickle coming out. I started feeling a bit ill and when I finished weeing I had a strange shivery cramping feeling that went all the way up my abdomen into my chest area.

I rang the GP first thing in the morning and asked for an apt as I thought that I had my first ever UTI. The receptionist said they do not give appointments for that and just to drop a urine sample off. I did this and then got a text later that day saying my sample was positive (it was e.coli I found out later, had blood and leucocytes in) and a prescription had been done for me.

So started the nightmare.😰

I developed a temperature, aches, shivers, intense pelvic pressure and pain. I was given Nitro 3 day course, no improvement at all, I rang drs again a couple of days later and was told sometimes 3 days is not enough so they gave me another 3 days. Same again, no improvement so was given another 3 days after that. No difference. I dropped more samples off, I think at first they showed something but after that they just said that they were clear.

I had to cancel a holiday I was in so much pain. A couple of weeks later I ended up with very high fever and shakes and chills and ended up in A&E after ringing 111. They gave a week of Cephalexin. Felt bit better and the temperature came down but it did nothing for the intense pelvic pain. Had a bladder ultrasound, normal. I managed to finally see a GP there was some blood so they sent me for a cystoscopy which was clear, and the urologist said I had interstitial cystitis, but about 48 hours after the cystoscopy, I developed ANOTHER raging fever, chills, back pain and shakes (could not make this shit up) I rang 111 as it was a weekend and the doctor thought the cystoscopy might have reactivated some infection, even though the urologist said no infection or stones and antibiotics not required. The 111 doctor prescribed me Co-Amoxiclav for 5 days. I actually stayed pain free for 2 weeks after taking that but it all came back and I still have the awful pain to this day.

It has been a whole year now. Docs won't help any more, I am left not even with pain relief, even if it is IC I am just left in agony. I take paracetamol but does not touch it. I do not really have much frequency any more although I have the bladder cramping and cannot tell sometimes when I am weeing, and I cannot stop it midstream any more and I could before. Sometimes if I am bursting it just comes out, I cannot stop it. All GP have offered is an antidepressant, the urologist wanted GP to investigate my recurrent fevers, I have had blood tests and stool samples and all normal and GP just said that they cannot see anything wrong with me. (on a phone apt, cannot have face to face)

My lower stomach is bloated, tender to touch, I cannot sit down without being in agony. Even touching against the kitchen worktop has me wincing in pain. Sometimes the pain and pressure in pelvis is so bad, it makes me nauseous and I want to vomit. In this whole farce, not ONE medical person has actually examined me in person and felt my abdomen. I had a really bad day painwise last weekend and when I weeeed there was pink on the tissue so there is obviously a problem somewhere. It is not period related as I am in my 50s and had a hysterectomy many years ago. My last attempt now at getting some answers is that I have ordered a more specialised urinalysis and microscopy test from a private lab but even if this shows something I will have a fight on my hands to get any more treatment so not sure where to go from here. I think the docs are fed up of me now. I will not lie, I have been having some bad thoughts that this is my life now, constant pain and pressure in pelvis and its just so unrelenting, there is no relief from it.

I am sorry that there are so many suffering the same. I just cannot help feeling that before Covid, I could have seen a GP at the start and been examined and given a longer course of appropriate antibiotics, I am not convinced that 3 days is enough.

Maybe this could have been avoided.

That sounds absolutely dreadful. Hopefully the private urine test will pick up some sort of previously missed infection. If this is the case they will, with your consent, refer you to their online private pharmacy who having read your test results will prescribe the correct antibiotic. The pharmacist will ring you to discuss the findings and tell you what is being prescribed. As it’s private obviously there is a charge for this which you can pay by card online but it’ll be so worth it to get to the bottom of what’s going on. I’m post menopausal, did some research and am now using Ovestin cream for vaginal dryness which can make women more susceptible to these awful urinary problems. Started in March this year and touch wood it’s been like a miracle.

LittleMonks11 · 25/08/2023 15:17

Ahh @Lliria I'm sorry the pain is back. I hope the Cipro works. You can but try.

@Pengydog big hugs. What a nightmare. I hope you get somewhere on Wednesday.

@StanleyGoodspeed what a horrendous saga. So sorry you are going through this.

I will update later. Rushing out with cats to cattery.

Panthereyes · 25/08/2023 15:35

StanleyGoodspeed · 25/08/2023 11:34

So glad that I found this thread!

I just cannot believe that there are so many of us suffering like this. I am another one left in constant pain. I have read about embedded UTI but as the NHS do not recognise it, I do not know what else to try. Might be epic, sorry

I have never suffered from an urinary problems until last year, I awoke a couple of hours after sleep feeling like my pelvis was about to explode and desperately needing a wee. I went a few times but got no relief, I was up all night on the toilet feeling like I needed to go but just a little trickle coming out. I started feeling a bit ill and when I finished weeing I had a strange shivery cramping feeling that went all the way up my abdomen into my chest area.

I rang the GP first thing in the morning and asked for an apt as I thought that I had my first ever UTI. The receptionist said they do not give appointments for that and just to drop a urine sample off. I did this and then got a text later that day saying my sample was positive (it was e.coli I found out later, had blood and leucocytes in) and a prescription had been done for me.

So started the nightmare.😰

I developed a temperature, aches, shivers, intense pelvic pressure and pain. I was given Nitro 3 day course, no improvement at all, I rang drs again a couple of days later and was told sometimes 3 days is not enough so they gave me another 3 days. Same again, no improvement so was given another 3 days after that. No difference. I dropped more samples off, I think at first they showed something but after that they just said that they were clear.

I had to cancel a holiday I was in so much pain. A couple of weeks later I ended up with very high fever and shakes and chills and ended up in A&E after ringing 111. They gave a week of Cephalexin. Felt bit better and the temperature came down but it did nothing for the intense pelvic pain. Had a bladder ultrasound, normal. I managed to finally see a GP there was some blood so they sent me for a cystoscopy which was clear, and the urologist said I had interstitial cystitis, but about 48 hours after the cystoscopy, I developed ANOTHER raging fever, chills, back pain and shakes (could not make this shit up) I rang 111 as it was a weekend and the doctor thought the cystoscopy might have reactivated some infection, even though the urologist said no infection or stones and antibiotics not required. The 111 doctor prescribed me Co-Amoxiclav for 5 days. I actually stayed pain free for 2 weeks after taking that but it all came back and I still have the awful pain to this day.

It has been a whole year now. Docs won't help any more, I am left not even with pain relief, even if it is IC I am just left in agony. I take paracetamol but does not touch it. I do not really have much frequency any more although I have the bladder cramping and cannot tell sometimes when I am weeing, and I cannot stop it midstream any more and I could before. Sometimes if I am bursting it just comes out, I cannot stop it. All GP have offered is an antidepressant, the urologist wanted GP to investigate my recurrent fevers, I have had blood tests and stool samples and all normal and GP just said that they cannot see anything wrong with me. (on a phone apt, cannot have face to face)

My lower stomach is bloated, tender to touch, I cannot sit down without being in agony. Even touching against the kitchen worktop has me wincing in pain. Sometimes the pain and pressure in pelvis is so bad, it makes me nauseous and I want to vomit. In this whole farce, not ONE medical person has actually examined me in person and felt my abdomen. I had a really bad day painwise last weekend and when I weeeed there was pink on the tissue so there is obviously a problem somewhere. It is not period related as I am in my 50s and had a hysterectomy many years ago. My last attempt now at getting some answers is that I have ordered a more specialised urinalysis and microscopy test from a private lab but even if this shows something I will have a fight on my hands to get any more treatment so not sure where to go from here. I think the docs are fed up of me now. I will not lie, I have been having some bad thoughts that this is my life now, constant pain and pressure in pelvis and its just so unrelenting, there is no relief from it.

I am sorry that there are so many suffering the same. I just cannot help feeling that before Covid, I could have seen a GP at the start and been examined and given a longer course of appropriate antibiotics, I am not convinced that 3 days is enough.

Maybe this could have been avoided.

This sounds like a classic presentation of an embedded uti to me,. If you can't afford to go to the private clinic in Harley Street, you could try and get a referral to the NHS LUTS clinic at the Whittington. The referral needs to come from a hospital doctor rather than a GP but if your urologist who gave you the pointless IC diagnosis won't refer you you could ask your GP to refer to the urologists at the Whittington, these urologists can then refer you to LUTS. The wait maybe long, some patients start off at the private clinic and switch over to LUTS once their referral has been accepted.

Pengydog · 25/08/2023 18:57

@StanleyGoodspeed that is awful. Sounds similar to myself with the awful constant pain in the bladder but I've only been dealing with it for 9 weeks and I'm fed up! I don't know what to suggest as there seems to be such little support for these kind of things even privately. I tried to make an appointment last week to see a female doctor who specialises in embedded UTIs and she isn't taking on any new patients privately!

Beurla · 25/08/2023 18:59

@Lliria I hope the Cipro works for you. It is strong, and has worked for me in the past. Please update how you get on.

@StanleyGoodspeed I'm really sorry you are still struggling. I hate the shivery feeling after weeing, I know exactly what you mean. Also, the crampy feeling when the UTI is lingering but not 'active'. Which lab did you send the sample to? I hope you get some answers, please let us know. I just sent a sample to a private lab too. It's so expensive, and we shouldn't have to pay. Clearly the standard testing is not fit for purpose so it should be changed.
Since your original bug was E Coli (mine too), have you tried D Mannose? That can help at least lower the number of bugs in your wee, but if the infection is currently not active/shedding phase and just hiding inside the lining of your bladder, it may not help. Do you have 'flare ups' where your symptoms get worse? Are you on HRT at all, systemic or local? That can really really help against the bacteria as well as the symptoms.

@Pengydog Oh my goodness, that is a lot of blood in the urine. Hopefully the urologist will get you investigated asap. I don't usually think cystoscopies are a good idea, but with that amount of blood, you definitely need one. Please let us know how you get on.

@LittleMonks11 Aww love cats. Hope you are doing ok.

I'm waiting for my test results to come back. Symptoms not too bad today and yesterday but definitely still not right, a lot of cramping in the bladder and mild pain. I'm thankful it's mild though.

StanleyGoodspeed · 26/08/2023 09:42

Thanks to everyone who replied, some helpful info there. A few points:

I have tried D-Mannose, it made no difference to me
I am on oestrogen only patch and have been since my hysterectomy at age 39

If only I lived near London I could look at those options for private treatment but I am in the north of England and its too far and would be so expensive to go there on the train and stay in a hotel and then the cost of treatment too. Its such a shame that the NHS is not helping women like us and are just left to languish in pain. I am still annoyed at my last conversation with the GP, apparently all my pain is caused by low mood!🙄 I was bloody fine before that night I got the UTI, ffs

The lab I am using to send my urine sample is Focus Labs, have to wait for results which take over a week, if this is negative I am just going to have to learn to live with this pain I guess😬

Lliria · 26/08/2023 10:20

@Pengydog know what you mean about the private route. When I self referred myself to a local private Urologist he said my pain was caused by PID . This then caused another layer of stress as I then had to go back to GP to be swabbed and have an internal to check for this !!!! It was all negative but I think he didn't know what else to diagnose !!!! Sometimes even GP don't have any answers either. I always see someone different, no consistency. One of my swabs showed thrush and a gram positive cocci . My GP said could be BV but not sure so I treated myself anyway.Im actually thinking of going to a GUM clinic and having a swab there. At the end of the day it all started with a flippin UTI !!

Pengydog · 26/08/2023 11:38

@StanleyGoodspeed focus labs is ran by Doctor Anderson who I tried to see privately but isn't seeing any more new patients regarding UTIs. When they cancelled my appointment they did say I could pay to have a sample tested though, which is what you have done. I would be very interested to see how you get on. Think it is what I will do once I finish this course of ciprofloxacin which don't seem to be helping 🤔

StanleyGoodspeed · 26/08/2023 12:26

yes, I will update when I get the results

Lliria · 26/08/2023 13:30

@Pengydog I'd thought about using focus but when I've mentioned it to various GPs I've seen over the last 10 weeks none of them seem keen to collaborate by prescribing any recommendations for treatment. One GP said didn't know about private labs and clearly wasn't interested

StanleyGoodspeed · 26/08/2023 13:47

I doubt my GP would prescribe anything if I required it, I might have to resort to getting a private GP😒

LittleMonks11 · 26/08/2023 13:55

Hi all - update from me.

Finished x7 Amox in France. Was all perfect - felt great. Had a couple of drinks here and there but nothing like my usual holiday mode of couple of big ones a night. Got home Tuesday around 2.30am after a delayed flight.

Niggles and mild pelvic pain started up again that day. Decided to watch and wait. Got a bit worse. Did a urine test at home Friday morning. No nitrates and barely visible leuks. Rang GP anyway. Got a face to face with a young male doctor who ive never seen before.

Long and short after going through my whole saga since last Oct is that he doesn't think I have a UTI. He was also sceptical about sending off a sample to Focus etc as I'd never had a culture identify a bacteria. He said I could have leuks lurking around normally. I have to admit that my primary symptom is always pelvic and suprapubis? pain. I don't have burning on weeing or desperate weeing.

We discussed HRT again and the link between utis and low oestrogen. So I started Vagifem pills yesterday. He also prescribed me 7x Amox to have in my cupboard but to try not to take them. So that's where I am now. I have a scheduled appointment with my GP in 3.5 weeks and a TV scan booked the day after (from a Dec referral!)

So the pain hasn't got any worse and actually eases a bit when I'm walking around. Will see how I get on with the HRT!! I'm glad I've got the ABs too as we're on the road to the SW for a week! Keeping on with DMannose and probiotics.

Reading everyone's updates and sending positive thoughts to all x

Beurla · 26/08/2023 14:13

@StanleyGoodspeed I hate when doctors try to say it's caused by mood. It's just a lazy thing for them to say. The NHS guidelines for UTI have been updated to reflect that UTIs exist in the lining which cannot be picked up by testing. You could definitely try vaginal estrogen, that really helps a lot of people even when the cause is bacterial, and it should be easy for you to get from the GP since you are already on systemic, lots of people need both.

@Lliria The Gram Pos Cocci could be a clue to the cause of your UTI. Obviously first they have to move from the vagina to the urethra.

Gram-positive cocci include Staphylococcus (catalase-positive), which grows clusters, and Streptococcus (catalase-negative), which grows in chains. The staphylococci further subdivide into coagulase-positive (S. aureus) and coagulase-negative (S. epidermidis and S. saprophyticus) species. Streptococcus bacteria subdivide into Strep. pyogenes (Group A), Strep. agalactiae (Group B), enterococci (Group D), Strep viridans, and Strep pneumonia.

Most of these can be normal flora, but also can cause UTI. S. saprophyticus causes 10-20% of UTIs, and Strep. agalactiae can also cause them (Group B strep).

I think a swab from the GUM clinic might be an idea. Maybe they are more in depth, I'm not sure. You could ask the GP which bacteria was isolated from the swab?

Strawberryapples · 26/08/2023 16:58

Honeybeebear · 16/07/2023 16:28

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.

I have had some terrible UTIs and had to try out many different antibiotics until it cleared. So incredibly painful.
Erythromycin was the one that finally worked.
Best of luck x

nonamesavailable123 · 26/08/2023 19:47

I have just been reading this thread and wanted to give a word of caution. My friend has had on and off UTI's for a few months. About 3 weeks ago whilst on holiday, she started getting symptoms again and sore kidneys. She was given antibiotics which seemed to work. She came back on the Thursday. As she was still sore on Monday she went to gp who took a sample to send off. I saw her on Tuesday and she said she had a sore back/kidneys but was otherwise ok. I got a very garbled message from her during the day on Thursday. Went to see her and she had a raging temp, couldn't eat, drinking made her retch. I took her to a and e much to her disgust. She was rushed through to a bed and hooked up to IV antibiotics. She had sepsis. Her blood pressure was through the floor. It took a week of antibiotics and medications to get her blood pressure back to a safe level. She nearly died, it was terrifying. It went from aching kidneys and a sore bladder to sepsis in 2 days. She is on the mend now but please don't ignore symptoms. We could have lost her xxx

Original poster

Honeybeebear · 26/08/2023 23:16

Thinking of everyone who is still suffering with symptoms. It’s just horrible isn’t it.

I felt yesterday like at the start of a UTI. I tried the canesten cystitis sachets and lots of water and felt a bit better today but started getting a few random sharp stabbing pains, almost like a pain that shoots right through my lower area- I think the urinary tract. I remember having it one day on my holiday but then not since.

I think I’m on edge a lot worrying about a UTI returning all the time and desperate not to have to return to the gp

OP posts:

LittleMonks11 · 26/08/2023 23:19

nonamesavailable123 · 26/08/2023 19:47

I have just been reading this thread and wanted to give a word of caution. My friend has had on and off UTI's for a few months. About 3 weeks ago whilst on holiday, she started getting symptoms again and sore kidneys. She was given antibiotics which seemed to work. She came back on the Thursday. As she was still sore on Monday she went to gp who took a sample to send off. I saw her on Tuesday and she said she had a sore back/kidneys but was otherwise ok. I got a very garbled message from her during the day on Thursday. Went to see her and she had a raging temp, couldn't eat, drinking made her retch. I took her to a and e much to her disgust. She was rushed through to a bed and hooked up to IV antibiotics. She had sepsis. Her blood pressure was through the floor. It took a week of antibiotics and medications to get her blood pressure back to a safe level. She nearly died, it was terrifying. It went from aching kidneys and a sore bladder to sepsis in 2 days. She is on the mend now but please don't ignore symptoms. We could have lost her xxx

Thank you. I'm so glad your friend is on the mend and that you acted so fast for her. The same happened to my sister in law. She developed sepsis from a UTI. My brother discovered her delirious in bed after going for a lie down as she wasn't feeling good. It's something I'm very conscious of since.

Original poster

Honeybeebear · 27/08/2023 22:19

Feel worse today, noticed that I need to wee a lot more. Was up a lot in the night.

I have some Trimethoprim that was prescribed to take as a preventative. Not used it yet, not sure if I should try it. I already took it for about 3 weeks before. I’ve only got 10 100mg tablets. I don’t want to become resistant to it. Not sure what to do.

OP posts:

Lliria · 28/08/2023 13:04

@Beurla Hi, have an update on this !
After an internal by my GP to rule out PID my pelvic pain ramped up - massively. Awful cramping/burning pain . Had to call 111 yesterday and was sent to an OOH. I saw a nurse practitioner and she was great. My urine was water clear and I showed her the swab result on my NHS app. She was surprised my GP hadn't treatment me for a potential pelvic infection. Anyway I now have a week's course of Metronidazole to see if that is now the problem. She has also advised me to go to a GUM clinic for a follow up swab.
I'm not sure if all the raking around during my internal aggregated everything or if it is a true infection. Either way I ll have to carry on with this treatment. Who knows this could be the missing piece of the puzzle 😏