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.

@Honeybeebear hi, no not getting better atm. Haven't been back to work since this started , or the gym , life getting affected now. I'm glad your a bit better. Tbh I had half a glass of wine a couple of weeks ago and it was fine. Helped me relax actually . Like you just want to get to a stage where I don't think about it anymore. Are you having any tests done ? Like cystoscopy

I could bloody cry! I sent my urine sample on Tuesday morning, it is 24 hour Tracked mail paid for by Focus Labs and I just checked the tracking number, they are only due to deliver it today! WTF Royal Mail are totally bloody useless

I wonder if it is still a viable sample, I might contact the lab and ask, I hope I do not have to do another one and even pay for it again when it is not my fault😳

oh and I do not think the Lab is even open today

Oh no @StanleyGoodspeed that's not good. I hope it is still a viable sample. I think Focus Labs will let you know if it is not viable.

I'm going to do a Focus test soon, will keep this in mind about the mail.

Please let us know how you get on xx

@StanleyGoodspeed how annoying. It adds stress to the situation doesn't it.
I know where this lab is as my farther in law lives in that area . It's a 2 hour drive from me, it would be great if they had the facility for a fresh urine sample to be done there. I would actually go.
I hope you get it resolved

How's everyone today ?
I have been taking a daily preventive dose of Cipro and not too bad but I mistakenly took too much yesterday . Thought I hadn't taken it so took another but dippy me picked up an old 500mg box as I had them stored together. So took 750 mg within an hour. When went to bed had pins and needles in my face and hands and felt ill this morning. Doh. I've taken a 500mg course before but suppose I would have spaced then out. Feel like I've poisoned myself !!!!
Thank god I wasn't meant to be at work today !!

@Lliria oh no! Hope you’re feeling better now and the pins and needles didn’t last too long.

I’ve felt ok today and tried a glass of wine this evening!

happy Monday! Hope everyone is doing okay.

I called Babylon last week for help - my only symptom is a pressure on my bladder making me only feel relieved when I’ve just been for a wee. No other symptoms and no pain. She said a UTI would have other symptoms (is this always the case?) so she thinks I have an irritated bladder.

I’ve got cystitis sachets and another round of nitrofuratoin - fingers crossed…

@Tableaufox I agree about the bladder irritation. I saw a urologist years ago and he told me that the inside of the bladder is like the mucosal lining on the inside of the mouth ( gag layer ) when you have an infection it breaks down a bit but repairs itself. So you may be feeling inflammation because of that ?
I now have pelvic pain after all my UTI activity. I'm sure the actual infection went weeks ago and now my bladder is in spasm. I've had loads of ABs over the last 12 weeks so I don't see how any infection can be left.
Someone on a forum suggested taking aloe Vera capsules for the bladder.

I am still in a lot of pain.

I have to re-do my samples, thanks Royal Mail😡 Have no end of problems with RM lately in my area, things going missing, etc now this.

I won't be able to do it until Monday as you need to spend 4-5 days beforehand avoiding certain things, there is a whole list of items on it including garlic and oregano. So it will be another couple of weeks probably before I do the test and get it sent in and results back. I was really hoping for some answers this week. Am so down about it all.

@Lliria im sorry you’re getting worse symptoms! A never ending nightmare.

Would bladder irritation cause a feeling of needing to a wee that’s only relieved on weeing? (But not urgency or pain)

yes, that is what my Urologist has told me, that all my symptoms are caused by an overreaction in the bladder (Interstitial Cystitis) that was caused by my original UTI

I have severe pelvic pain
feel like a need a wee all the time, no relief
smelly urine
severe bloating

@Honeybeebear hi, wanted to ask you,when you were taking the low dose of AB everyday did you still get some bladder spasms after weeing ? Or feel that taking just a daily dose wasn't solving it ? Was just wondering as I'm still getting bladder " jumping" sometimes and I dread it. Doesn't happen every time but I'm thinking will this one daily dose solve it eventually or is there an infection still. Tbh I don't see how there can be after all the ABs I've taken !

@StanleyGoodspeed when I see the urologist next week ( private as couldn't wait 6-12,months on NHS ) I'm sure I ll get the IC badge. When I've read up on symptoms the only main one I have is pelvic pain. My urine is clear and no stinging etc,but I do get bladder Spasms after weeing sometimes. Tbh the pelvic pain is the worst bit it burns and cramps like a bad period pain.
What treatment have you been offered if any ?
Did you have a cystoscopy ?
I read there are bladder instillations that help and medication that coats the bladder lining.
In my head I'm still instinctively feeling it's a low lying infection.
I'm actually thinking of leaving my job because of this. I haven't been for a month now and have a phone chat later with my workplace.
I actually can't really afford to leave right now but have become unreliable.
I'm 56, and apart from a few UTI s in the past I've never had anything like this before it's so depressing 😞

@@StanleyGoodspeed sorry your sample got messed up. Causes more frustration. I have been wanting to do one but am never off antibiotics long enough. Also when I mentioned it to my GP she didn't seem interested and said ask the Urologist! So I know she probably won't be keen to prescribe anything if they recommend .

I have not been offered any treatments, I have been discharged by Urology after the cystoscopy where they said no infection and its IC. GP said he cannot see anything wrong with me and I feel they have just washed their hands of me really. All I can do is take over the counter painkillers. I am convinced that I have embedded infection, due to only being given 3 day courses of Nitro at the start of it all and then my recurrent fevers. But because the NHS tests come back clear they just tell me I am fine.

I am lucky I do not work as I would not be able to, I am pain all the time, its really severe pain which paracetamol does not touch.

I am a bit worried about my urine sample, if it comes back clear I do not know where to go from here, and if it comes back showing infection I do not know how to get treatment as the NHS will not help me. I looked into the private clinics but they are closed to new patients.

My pain is so bad that is really uncomfortable to sit down for long, lying in bed is not as bad but even to sit down for long enough to watch a film at weekend, I have to take Solpadeine Max and a shedload of wine to blot out the pain enough to concentrate on the film, not ideal and not how I want to live my life🤐

@StanleyGoodspeed I understand your pain. When my pain first started I went to A&E as thought something had burst. Needless to say after a 10 hour wait and a blood test I was sent away- they didn't know what it was.
Did the Urologist not give you any indication of whether this will diminish in time ? There will be a urologist out there who specialises in this sort of thing or at least is pro active.
I agree with you about the ABs . There was a whole week in July where I was in pain with a UTI and had all the symptoms but a GP at my practice refused to give ABs even though they should know dipsticks are unreliable. She wouldn't even send a sample off preferring instead to say I had Chlamydia and doing a swab for that ! which was negative. I'm sure this delay has caused some bladder lining damage.
IC is a last resort diagnosis when other things are ruled out, but giving a problem a name doesn't help the patient does it .

@StanleyGoodspeed have you had a pelvic scan ?

yes, all looked ok, previous hysterectomy so all those bits gone

Yes I still had them the first week I was taking 1 tablet a day, and then by the end of the second week it was only occasional.

Iv’e had the odd really strong shooting pain (I think my from bladder) a few times since.

the urogynegologist I saw mentioned that some infections can cause the bladder to be irritated after infection. I haven’t gone back or pursued further tests as I didn’t want to have them yet.

@StanleyGoodspeed sorry you’re in such pain. When the pain was bad for me, I couldn’t sit down for long either, it’s horrible.

@Honeybeebear Thanks. I've had that shooting pain , really random.
This is all such a drawn out process isn't it.
I'm seeing the private Urologist next week so I can ask him as well.
My GP referred me to a urogynae as urgent but it was rejected and I've been put on a 4 month waitlist.
I understand why you wouldn't want more tests if you've settled.
I'm sure I ll be offered a cystoscopy but I don't have the funds to pay for it !!

I’m on another round of Nitrofuratoin, was prescribed 3 days but have been given 5 days. Read the leaflet and it says for bladder infections you should take for 7 days!! Quite angry about it. I feel so much better on the ABs, almost back to “normal”.

Does the fact Nitro works show it is a UTI? Or does it mean that it could be a similar infection that is helped by ABs but not fixed? Wondering what next steps will be if it inevitably comes back.

I was given 3 days of Nitro at the beginning, I must not have read the leaflet🙄

It did nothing for me at all, the pain just got worse and worse, ended up at A&E with suspected sepsis at one point, they gave me Cephalexin for 5 days, which reduced my fever but not the pain. They said they would have kept me in for IV antibiotics pre-Covid but they were so swamped they sent me home.

The only time I have ever had any relief from the pain and pressure is when I had Co-Amoxiclav after the cystoscopy when I developed another fever. I was pain free for 2 weeks then it all came back. This is why I am convinced I still have some infection somewhere