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.

Ask for a referral to the dedicated clinic at the Whittington Hospital. You could see one of the docs there privately too first

Harley street is £250 for the first consultation and £200 for follow ups. They will give you a private prescription and you can ask your GP to transfer this to an NHS one but if they wouldn't you can get your antibiotics and hiprex on the private prescription they give you but you will have to pay private prices.

Thatsnwhat I did . Luckily my GP was happy to transfer the initial private prescription of Cefalexin and Hiprex to a repeat NHS one.

I was at my wits end like many on here and sick to death of being told no infection, offered bladder instillations that irritated my bladder even more and that was all. Professor Malone-Lee said I had one of the worst infections he’d come across. It took years to get it under control but my quality of life has been revolutionised. I never take it for granted not being ruled by loo trips all day and night, constant pain, exhaustion, depression and anger at being fobbed off with ridiculous diagnoses, ridiculous, painful and useless drugs and treatment.

Yeah I had similar pains, I had a night where I just couldn’t sleep at all.

how long will the results take from the focus lab?

hi all, samples sent off, fingers crossed it can get there in time!

Results take about 10 days I think, as there are 7 days I think that it has to "grow". There are 2 samples, one to grow and one to look at under the microscope.

yeah, I suppose if it comes back clear I will be at a loss, I think I am going to try and get another referral to Urology if its clear as the doc who did my cystoscopy diagnosed me there and then with IC/Painful Bladder Syndrome, said the original e.coli UTI must have triggered it. He mentioned there were treatments that might help, even bloody pain relief would be a start, but then on a phone call with the Consultant he discharged me with nothing.

My last conversation with GP on the phone (not doing FtoF still) just said he cannot see anything wrong with me and all the pain is caused by low mood. All I need is a high dose antidepressant which I declined. Funny how I was fine before that night the UTI started, its like a switch was flipped and then I am in agony. Its been 13 LONG months now.

@SuicideIsPainless how are you doing? Hope you are ok?

@StanleyGoodspeed I'm praying everything goes through for you with these tests. I'm trying to decide whether to do the same or just book an appointment to Harley street. I emailed the clinic in London this morning and they have responded saying I could probably get an appointment quicker if I'm not fussed which Doctor I see. @Panthereyes @Sugarplumfury when you both went to the clinic, did you have to pay the £250 upfront when booking appointment or when you got there?

@StanleyGoodspeed well if something grows on your samples then at least you ll have a probable cause for your pain.
Why is it that when GPs done know the answer they suggest it's a mental health issue ? Your pain started with a UTI.
I'm seeing a different Urologist tomorrow as the first one I saw a month ago said I had PID which was disproved by tests .
I'm going to ask him about private testing labs.
Can't believe you ve not been examined by your own GP.
Where do you live ? COVID no face appointments stopped ages ago .

pengydog I paid after the appointment. Whether that’s the same now I don’t know though as I first went in 2017. I paid after each appointment.

@Pengydog same as sugarplumfury I paid after the appointment. They would email an invoice after your appoinment.

Hi all,

My antibiotics finished on Saturday. About 1 hour ago, the spasms began again in the bladder. Not painful at all, but discomfort, twinges of bladder letting me know it's there and I will need the loo lots soon.

Sick and tired of it all. I feel like I am lucky to not be in as much pain as you all but also more scared at what it is as it is just so odd. I am in my twenties and never had children (TTC unsuccessfully). I do have endometriosis so I am concerned that's the cause but that will take a long time.

I am going to go through private referral only now and call up my insurance. Enough is enough.

I am also a patient of Prof Malone-Lee's Harley Street clinic. I can live a normal life now! I am so grateful for their existence and help.

They pay great attention to the patient's symptoms and you answer a series of very detailed questions (on each visit) to monitor how the treatment is going. A fresh sample of your urine is examined for the presence of white blood cells and cells from the lining of the bladder - both of these are signs of infection. You are provided with literature that explains embedded infections and why they evade detection in dip tests and why cultures don't provide definitive answers. The late Prof Malone-Lee also published a book explaining the condition.

The team are active researchers in the field and their protocol has been developed through solid scientific investigation. They are patient-centred and fully understand the suffering their patients experience, often for years or decades.

To be realistic, I know I am not cured but the condition is controlled and I am 99% pain free and can live my life. The antibiotic you are prescribed at first may not be the one you continue with - treatment may need to be tweaked.

I went to HS after reading about them on Mumsnet - thank you so much! If you are in the UK or can get to the UK from abroad, I would urge you to seek help directly from the experts in the field. Most urologists and even urogynecologists have no idea about this condition and will be horrified at the protocol that can give us our lives back.

@Pengydog
The first visit costs £250 (including the urine examination). You are invoiced after the visit and have a few weeks to pay it. Subsequent visits are £200 each. You typically would have an appointment every 3 months. It's best to go in person so they can look at your urine, but you can have remote video appointments too. If you need a urine exam which is not done at the same time as your appointment, it costs £75 ('pee and flee'!).

@Tableaufox I know what you mean about the bladder spasms . Mine started after a 3rd Antibiotic course about a month ago. The irony was the UTI symptoms had calmed but then the spasms started. I sometimes have been in bed and my bladder feels like it jumps !
If I get stressy when it happens through the day it gets worse .
I've got my private Urologist appointment tomorrow and I'm going to ask about this . Infact I'm writing a bullet point list of questions to ask as this is costing me £200 !
I asked a GP about these spasms and she said they can last months if you ve had a bad infection - great

bluestripeymug. My experience at Harley Street was the same. It took a long time for mine to clear, as a cystoscopy prior to going privately, showed my bladder was full of ulcers. The pics on the screen looked like the topping of a pizza 🫣. The relief at being believed, sitting before someone who seemed to know what was going on and what to do about it, felt so reassuring. I was at the point where I was thinking of asking for my bladder to be removed, it was that bad. Professor Malone-Lee said he’d been told that by other patients, and that it was not only unnecessary, it wouldn’t solve the problem as the infection tended to then work it’s way up into the ureters.

it took 5 years to get mine under control, which is not the norm but I’d had it for 7 years+ by the time I went to the clinic. Now I’m just on Hiprex and if I start with a flare of uti symptoms, which is thankfully very rare indeed now, I go back on antibiotics till it settles, which is usually within 2-5 days. I got lots of flare ups but now about 1 or maybe 2 a year. The rest of the time I go to the loo far less than any of my friends. We are all in our 60s and 70s. It was the best money I ever spent and worth going without holidays and other luxuries to pay for.

I do not believe this, the samples have been sent somewhere else by error of Royal Mail , so they will not get them today, what the fuck is wrong with RM lately? Went through a different post office too this time

I just cannot believe it

I might have to do them again😡

@StanleyGoodspeed oh no , how bliddy ridiculous, how did you find out they d gone elsewhere ?
This is not what you need when your waiting for answers

hi, I made a note of the Tracking Number and checked this morning. So, they should have got them today but might be tomorrow now if I am lucky, not sure if they will be able to use the samples or not, what a bloody joke, its RM fault (again)

I am soo low right now. I am in despair really

@StanleyGoodspeed that is ridiculous happening a second time.

I have taken the plunge and booked an appointment at Harley street for next Tuesday. It will cost a fortune in train fares and consultation fees and means I will have to leave at 6am in the morning to get to my 10.30am appointment in time. I'm now just hoping something good will come out of it and not just a waste of time and money.

@StanleyGoodspeed it's ridiculous . I hope they can use your sample.
I feel for you , it causes so much extra stress when all you want to do is help yourself.
Are you still having pelvic pain ?

@Pengydog good for you. Does it make you feel more positive you done something pro-active ? You did well getting an appointment for next week.
I saw another private Urologist today . ( the first diagnosed me with PID ! )
The one today actually recognises low lying/ embedded infection ( thank God)
And the IC question never came up. I've a couple of tests to have done then he s going to prescribe 3- 6 months of ABs. I'm happy to go with this.
He said a week's AB does not always clear a UTI . At last after 10 weeks someone listened - but it cost me £200.

I’ve sat and read every post and am now weeping. I’ve felt that for the last 12 months my life has been on hold and will admit to occasionally not caring if I woke up in the morning or not. I’ve always wee’d more than anyone else I’ve ever met and up a few times in the night, but didn’t ever have urine infections. 15 years ago a random scan for something unrelated I discovered that I had 2 ( too large to pass) stones in each kidney. Never have caused any problems and I have a yearly scan to make sure they are still in the same place and haven’t moved towards the ureters.
Last September at the age of 65, I woke up one morning feeling like my bladder was bursting and uncomfortable. I couldn’t walk without it feeling as if my bladder was bouncing with every step.
My GP said I had nothing show up in urine test and an internal showed I had a mild Cystocele ( bladder prolapse) I tried physio, pessaries but nothing got rid of the intense pressure on my bladder needing me to wee every hour at least, day and night.
I referred myself privately to a gynaecologist and he said it was mild but obviously was affecting the quality of my life. I paid £6000 to have it repaired and had relief for all of three weeks. At the 8 week post op check up he said “ the op was a success” and basically dismissed me.
Over the last 8/9 months I had constant pressure from the bladder, sore urethra, a couple of instances of small amounts of blood in urine, several urine tests and a few courses of antibiotics. I’ve now asked for a referral to urology as I’m thinking it’s a bladder issue rather than another prolapse.
Like some of you, I sometimes have a period of say 4 weeks when I have no symptoms at all, then wake up the next morning with the urgency to pass urine.
Im booked to fly to USA next Thursday to see one son, then the Far East in October to see another son and the thought of being ill overseas is scary.
I did an E consult today as I’ve had 7 days of being virtually housebound and crampy pelvic area and saw a doctor today who has prescribed Trimethoprim for 7 days and to see him again next week. If there is no improvement he says he will try and get my urology appt brought forward. That has scared me as it sounded as if he thought it might be something sinister.
Reading through your posts, it really struck me how variable treatment etc is from area to area.
Also, thanks to this thread I’m going to try cutting out sugar in case that is causing a problem. I’ve never drunk coffee, always have decaf tea, don’t smoke or drink but I do love chocolate and cake!
Those of you who mentioned antihistamines - would that be something like Benadryl? I take it if my hayfever is troublesome and if I’ve got painful mosquito bites. Maybe I could try that as well.
Sorry it is such a long waffle, it’s hard in real life to explain how completely debilitating bladder problems are isn’t it? My husband and daughters are very supportive but they have no idea how much it’s bringing me down. In 12 months I’ve gone from being an active nanny doing some childcare, a bit of supply teaching ( busy days with infants), walking, going to salsa dancing, singing in my choir - to a shuffling old woman. I couldn’t even take part in our concerts this year and just standing for any length of time was too uncomfortable.
Im so sorry that you young women are all suffering, hopefully there is light at the end of the tunnel for us all. Please excuse any text errors from this old teacher - why isn’t there an edit function!

@Pengydog That is great news, I am so glad you are going. I hope they can help you. If you feel like letting us know how you get on, that would be nice to hear. It's such a long haul treatment with plenty of bumps in the road, and it is financially very difficult.
@Sugarplumfury I also considered getting my bladder removed - that is the deep desperation I had fallen into. I am almost pain-free and feeling great.I am on 2 antibiotics and Hiprex so a way off Hiprex alone - I will hope for the future.

What a collection of heartbreaking stories of suffering, they are so hard to read. I hope that knowledge of embedded UTI continues to spread (as it is slowly doing) and that research continues to improve the treatments. For those urologists and GPs that have dismissed our symptoms or who have been outraged at long-term antibiotic treatments, I feel like saying "Fast forward 10 years: you will know more then and I hope you look back on us with regret that you did not trust our symptoms and were not more curious to find out more." I hope by then our condition will be taught at med school and presented at conferences.

@Pengydog a little tip (if I may): get yourself a sterile pot for urine samples to take with you because they give you a really tiny little bottle to pee into. After a near-disaster on my first visit, I always decant from my large pot into their tiny one!

@Lliria I'm glad the uro you saw recognises chronic UTIs, that's really positive. Did they mention which kinds of tests you will be getting? Where abouts are they based? I am still having on and off mild-ish symptoms despite being on Hiprex and loads of supplements. Considering UTI specialists but I am so far from London so wondering if anyone closer.

@Storynanny1 I'm so sorry you are suffering so badly. The cystocele probably wasn't the cause, it can be for some people, but it is very common. Are you on any HRT at all? I have heard that helps many women.

@Pengydog good that you have an appointment so soon and won’t have to wait too long.

@Lliria really glad to hear you were listened to at the appointment with the urologist. What tests will you need to have before the antibiotics?

@Storynanny1 so sorry that you have been suffering too.

I’m ok at the moment, I feel like I’m managing the small flare ups which are mostly random shooting/stabbing pains now and again and then just a more aware feeling. I wonder if it’s the bladder still irritated from the infection. I’m using Canestan 2% cream a few times each day as I constantly feel a low level of soreness and it seems to help.

i would like to try and cut down on sugar to see if this helps but I’m finding this hard to be honest.

Yes I’ve been using Vagifem pessaries twice a week for a few years now.