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.

@Beurla @Lliria and to everyone else who has been chatting to me on here- thank you. It's so nice to not feel alone and know that others can relate to what you are going through!

I'll let you all know tomorrow how my appointment goes 😊

Sorry @Lliria I meant to add, that is great news regarding the doctor. Hopefully these new antibiotics will do the job for you 🙏

@Pengydog I think it means like Lliria says, Gonnorhoea was tested for but was negative. Good luck with the doctors. If they get you to do another sample, it may just come back negative because you've been on Nitrofurantoin.

@Tidsleytiddy My Microgen picked up BV in my swab but not urine. Urine was 98% E Coli 😯😯at the start of my recent infection.
I think that some BV bacteria is normal to have, it's only really when it overgrows that it causes symptoms. I had no vaginal symptoms and the BV bacteria picked up was only 2% of the sample, the rest was 'friendly' bacteria. Although there is an interesting study which says that BV bacteria can interact with any E Coli in the bladder and 'help' to cause a new UTI, so perhaps I should treat it. https://medicine.wustl.edu/news/vaginal-bacteria-can-trigger-recurrent-utis-study-shows/#:~:text=Conventional%20thinking%20holds%20that%20recurrence,bladder%20to%20cause%20another%20UTI.

@Lliria I'm glad a GP finally listened to you! and I hope the courses clear your symptoms.

@Lliria so sorry you didn’t feel well enough to go on holiday. Good that the Gp has listened to you though. How are your symptoms compared to last week- have you noticed any improvement at all?

@Pengydog with the thrush showing up on the test it could be worth asking the GP for treatment for this to see if it helps. I didn’t really think I had the symptoms at first as every was sore and hurting anyway but the dr prescribed thrush treatment and it did help my symptoms. I had to take way over what was initially prescribed through as it kept coming back after every few days whilst I took the antibiotics. I think probiotics helped a lot with this in the end.

I can’t see any of my results on the NHS app- it would be so helpful to see them as I didn’t even know what they said apart from no infection!

I was silly today and had a coffee for the first time in about 5 weeks, also forgot to take my D Mannnose at the usual time and had a few hours without water this afternoon when busy. It feels like I’m walking on a tightrope trying do remember everything I need to do to avoid it all starting up again. One thing forgotten and I start feeling that burning feeling again. Hoping it passes with lots of water tonight.

I’m feeling really cross tonight as I really believe that if I’d been treated with a proper course of antibiotics for 10-14 days in the first place instead of a 3 days course I wouldn’t be experiencing this.

what other infections are ever cleared up in a 3 day course? I think I had a longer course for a slightly swollen infected thumb in the past.

sorry just needed a rant tonight

How is everyone feeling today? I'm still the usual. Dull, constant ache in bladder 🙄
On a positive note, I have seen a doctor this morning who, I felt, was really thorough. She took down notes whilst I was telling her about dates and symptoms and types of antibiotics I've had over the past 7 weeks.
She has prescribed me 7days of ciprofloxacin and a tablet and cream for thrush.
Her concern though is that it could be kidney/bladder stones irritating my bladder and therefore the antibiotics are pointless. She is going to call up the hospital and chase up for my CT scan results herself as it was over a month ago now. I have to do another urine sample to send off- as @Beurla said though, it will probably be pointless as will come back negative with me currently taking nitrofurantoin!
I am going on holiday this weekend but she wants to have a telephone appointment with me next Wednesday just to check how I'm getting on.
@Honeybeebear I feel your frustration, it feels like it's never-ending doesn't it? I too feel like if my sample hadn't come back as mixed growth I would of known what bacteria it was and had the right antibiotics and therefore not nearly 7 weeks of pain 😡

@Honeybeebear Hi, I bet when you started this thread you may not have thought it would keep going ! I'm glad you did though.
I'm feeling a bit better each day but to get here has been 9 weeks of hell and frustration. I've never had so many GP appointments / call backs. My life has been on hold. I just couldn't face driving to Spain as it would have been unfair on DH had I been ill on the way. I was going to see my parents not staying at a resort so I can fly when feel better.
Like you I feel annoyed that my treatment was insufficient and if I was a legal person I'd say negligent. When my original UTI went to a kidney infection my GP practice was on black alert so couldn't be seen. When I was sent to hospital for IV ABs and didn't get them due to a mix up it then made the infection last longer.
I've now had 6 AB courses in 2 months!
Your right about the 3 day courses- who ever made that rule has never had a UTI.
My DH has a skin infection and is on strong ABs for 7 days !
I remember seeing an OOH years ago who gave me 10 days of Trimethoprim for a not very severe UTI !!!
Your bladder is probably still in recovery. I read the aloe Vera and marshmallow tea is soothing for the bladder.
I had a very small glass of red wine after no alc for 2 months and my bladder was burning at bed time.
We ll get there, thing is once this is over I ll be terrified of getting another infection 😭

@Pengydog sounds like a positive GP appointment. ciprofloxacin is a good antibiotic and strong compared to nitro. The private Urologist I saw prescribed me a small dose everyday for 3 weeks but I delayed taking it as I listened to a practice nurse who said I had to wait for a positive MSU - it came back mixed growth!!! I ve started them now.
The irony is if we d all got the right ABs to start with we wouldn't have been in this mess.
You should feel better to go on holiday soon. I had to postpone mine but if it had been this week I would have gone.
The prescribing protocol around mixed growth results needs to be looked at by
Individual surgery's. NICE guidelines from Feb this year advises women to be treated on symptoms but some GPs won't do it sticking to " the dipstick is clear "
One GP said to me a month ago -" I'm not giving you antibiotics that's not a UTI you have Chlamydia" - swabs were negative - of course 😡
I had a CT to check for stones - normal as I sense yours will be x

Message of this thread: always demand 7 days straight off to kick it, especially when it's a bad one. I had a few awful years with embedded infection and needed six months of low dose antibiotics and a small operation to fix it

@Honeybeebear It feels like I’m walking on a tightrope trying do remember everything I need to do to avoid it all starting up again
Yeah I feel exactly like this! My bladder seems to have settled down the past couple of days but still not 100% normal.
I'm taking -
Hiprex every 12 hours (maybe that is just keeping it at bay cause it works like an antibiotic) and need to check and keep urine PH 5.6 or under when taking this.
UTI Pro Plus every 12 hours apart from the Hiprex
D Mannose when I remember
Oil of Oregano capsules when I remember
PACs and propolis when I remember
Probiotics once a day or every 2 days well away from the Hiprex
I did take vaginal estrogen but stopped cause in second half of cycle

Trying not to let my bladder get empty for long as it seems to ramp up then.

@Lliria It sounds like you had a positive appointment with the GP. I hope the Cipro works for you. Yes I'd call it negligent too. Yeah I am terrified of UTIs, almost any other physical pain I would take over bladder pain.

@YukoandHiro Yeah 7 days for sure. Could I ask which operation you had?

Hi all. How's everyone doing today? I've been reading from holiday.

I finished my x7 amoxicillin on Monday. Symptoms had pretty much ceased by then just a very very mild discomfort in the lower pelvis. I am now symptom free.

Taking D Mannose in the morning (I actually really like the taste of the pink fizzy tablets!) and a Proven at bedtime.

I ventured two small glasses of beer last night and so far so good. I will not be resuming my Prosecco habit for a good while yet. I have also given up my coffee habit and gone just one (nice expensive brand) decaf in the morning. One caff tea then decaf tea after that.

And will still be taking up the ultrasound and GP appointment to discuss preventative measures against the 8 or so UTIs I've had since last October - or the one continuous one that never goes away.

Keeping everything crossed for myself and everyone.

X

@LittleMonks11 sounds like your making progress which when away is a relief !! I'm sort of with you on the "continuous" theory. My GP asked me this actually on Tues. She said do you feel it's a new infection or has it never gone ?! I think it's never totally been eradicated. To prove my point my latest MSU sent by that GP came back with blood and mixed growth and guess what when it was dipped in the surgery nothing showed ! I'm waiting on a scan like you and I'm seeing a Urologist. Last 10 weeks been a waste of my life tbh !!!!
When I/we get past this it will be a bad memory 😬

Hi OP, just been reading all your posts as I am going through something similar.

I will be honest that I've entered a panic about STIs because when you google it comes up but I have been in a faithful (I HOPE) relationship/marriage for 10 years. I am 29 now, never had a baby.

On holiday, after sitting in my bikini all day, I got what felt like a UTI (my first!). Never felt my bladder was empty, spasm feeling towards the end of a wee, frequent urination. I was given 5 days of antibiotics straight away (within 2 hours of symptoms) and took them. The feeling of needing a wee and slight spasm returned so I got a 3 day course of nitrofuritin. After that I felt about 90% normal but increased urination was there (I was going more for a full wee). However a few days passed and I was 95% normal and then did a urine sample when I finally got a GP app. Now I'd say I'm 98% normal. Urine test negative - no further action apparently. I still feel a bit 'hmm' down there. Only symptom is more frequent urination and also I have this difficult to explain feeling - like the feeling when you need a wee and only get relief once you've weed but also being able to hold the wee for hours still - feeling only goes immediately after a wee.

I am unsure what this is, if I am paranoid. Whether to see how I am and get another appointment. I feel you!

@Tableaufox Hi, sorry you ve gone thru this you 'll have sympathy on this thread .
Maybe you still have some residual ureathral inflammation after the infection has cleared.
Trouble is once you ve had an attack it can make you think it might come back - I know I do.😬

I have some tips for preventing UTI, but they are quite difficult to keep up long term and pretty embarrassing and probably TMI 😬😬. If I slack on these, I get a UTI.

1. Bottle Washing. There is a book by a lady called Angela Kilmartin, called "The Encyclopaedia of Sexual Cystitis". Basically, you wash a certain way before and after sex, and after every bowel movement. The book is quite old fashioned in it's wording, but I really believe it helps. It's pretty difficult to explain and won't work unless you do it properly. Here is a short description, the book explains better -

1. Fill a half liter bottle with warm (I use v hot) water
2. Wet and soap your anal area with a natural and non-irritating soap (such as Castile or olive oil soap) and then wash your hands thoroughly with soap
3. Sit on the toilet with your back slouched forwards
4. Pour the water downwards from the vagina and clean all areas front to back with your other (clean) hand
5. You could use a shower or bidet as well but always ensure the water flows front to back (and try to make sure the water is not too forceful due to splashes)

I actually also use really hot water (as hot as I can stand) and antibacterial soap (on the anus only, not the vulva) when bottle washing and usually use a few bottles to make sure it's really clean. Also - both me and my partner wash very thoroughly within half an hour before sex - this is the hardest part as it is so unspontaneous. It's horrible to have to ask him to shower and wash his penis, base of, and balls, thoroughly with hot water and anti bac soap before, but I found that just me washing cut the UTIs a lot, but didn't completely stop them. Also do the bottle washing especially down the urethra and vagina, soon after sex, cause small amounts of bacteria can be around and travel up the urethra.

2. Other tips for routine for sex - I actually find it better to have some urine in the bladder before sex, so you can get the most important thing for preventing UTIs - a good strong pee immediately afterwards.
   Do not have anal sex
   Avoid prostate massage
   Use sugar free lube (I use YES water based)
   Watch that the penis goes nowhere near your anus, like slipping out by accident.
   I drink D-Mannose before sex, and after too, for 3 days. Every 3 hours and especially before bed. There is a correct way to take D-Mannose, you can google it. It only works for E Coli.
   It's better to have sex during the day so you can pee a lot after.

3. Keep hydrated, and pee at least every 3 hours.

4. Address low estrogen if needed.

5. Take probiotics designed for female microbiome or urinary health.

6. Do not wear thongs

I can't think of any more at the moment. It baffles me how some women don't have to do any of this and rarely get UTI, and some like me, prevention is like a military operation! Science must hold the answer, but it's not known yet, so for now since I am so prone to UTIs which don't shift, I focus on eliminating as much as possible the risk of any fecal bacteria getting near urethra.

I didn't have a UTI for years and years following this routine. In December last year I was really busy and didn't do prevention, and bam - UTI. Same again this July.

@Lliria thank you. I just find it shocking that the doctor has finally done the urine sample and simply said “no further action” the UTI symptoms are there! Not even booking a new appointment.

@Beurla I agree with all you ve said ! We may be similar ages I don't know but I first bought Angela Kilmartins book in my 30s and I'm in my 50 s now.
Like you I was doing the Bottle washing religiously at times almost to an OCD level !! Before my current recurring infection started in June I hadn't had a UTI for 3 years and I think I got complacent. I know I hadn't been been perfect with the BW and I'd even stopped taking D- mannose for a few months nightly.
To me it shows these preventative measures were working. These last 10 weeks have been all consuming and affected my life. As you say some women don't get UTIs they are so lucky.
I'm not expecting great things from my upcoming ( private) urologist appointment. What I don't want is an IC diagnosis, I don't believe I have this. I'm prone to UTIs that take ages to clear ,mainly as the NHS cultures are crap and I don't get the right AB !!
I ve had more insight from this thread tbh so thanks to the OP !!

@Tableaufox as you will gather from reading this thread it's a well know fact that some MSU s don't grow anything giving a false negative. The NHS don't grow the cultures long enough so if there's a resistant bug in there it flourishes after the ABs are stopped. If you get your symptoms back go back to the GP or try a different one. Over the last 10 weeks I've seen several GPs / nurses and they all had a different opinion. One GP said I didn't have UTI but Chlamydia !! I had swabs which disproved this !! Another said I couldn't have an infection as the dipstick was negative however when the sample came back it had blood and a mixed growth in !!!
Hopefully you will be fine and you won't need to see anyone x

Hi how is everyone doing?

My symptoms seem to be back 😥😥. Base of my bladder feels raw or like there are little ulcers in it.

Don't even know if there is any point going back to the GP and getting another inaccurate test, but £100-£200 for an in depth one is hard financially. As is seeing Dr Malde, who will say first to do the PCR test.

Maybe it's the Hiprex I've been on. Think I will stop everything and see how the next couple of days goes.

Reading magazine at airport (delayed flight bay h) and saw this

Sorry you are feeling rubbish again 😣

Hello!

hope everyone is doing ok?

@Beurla sorry to hear the symptoms are back

I’m so glad this thread is still going, it was such a support to me when I felt so alone and sick of being told to drink cranberry juice!

I would say I’m 95% back to normal at the moment. I’m still taking D Mannose and probiotics and do feel that occasional burn/sting. I’m very tired though, not sure it’s it’s the weeks on antibiotics or just from feeling so unwell for weeks.

I started to feel 99.9% better after my period started Sunday. Today in the shower I started thinking about it again. Now I can’t stop thinking about it, meaning the frequency feeling is coming back. Is this all in my head? I find it odd I don’t get much else pain. Very scared and worried. Haven’t had sex in a while because I’m too afraid

@Honeybeebear Hi, glad to hear your feeling better. I think the tiredness is part of the recovery process. I feel exactly the same. As I had to cancel my Spain trip a few weeks ago me and hubby went to the Norfolk coast for a few days. We did quite a bit of walking around and by the evening I was shattered , Same for me with the odd symptoms too. I got a bit de- hydrated one day ( stupidly) and had frequency/ stinging for a few hours that night .
I also think the Antibiotics cause long term effects or maybe the immune system is tired from fighting?
It scares me if I add up all the courses I had, probably about 7 over 3 months.😬 I think omg hope I don't get a superbug ! It didn't seem to bother the GPs / OOH who gave me them though .