Bladder pain not UTI

[ponderingitall]

Hello, I've had on and off bladder pain plus tingly 'bits' for about 2/3 weeks. Tested for UTI and nothing. Tested for thrush and BV, all negative. I had a smear about a month ago, all clear for HPV. Should I go back to doctors or am I overthinking it all? Thanks.

[KoalasandRabbit]

I would go back and get a retest for uti - I've had them missed in past.

[Comps83]

I've had many a UTI test negative even when the sample was pink with blood
Do the test first thing in morning

[elsaandanna]

There was a similar thread today.
How old are you? Peri menopause can cause this sort of thing

[ponderingitall]

Thanks all. I'm 35. I went back today and had a swab. Doctor said I had something in my irons but not enough for antibiotics. Apparently next step is pelvic scan if the swabs are clear.
I'll look into perimenopause, I hadn't even considered it.

[ponderingitall]

Sorry not irons - Urine

[KoalasandRabbit]

Did they send the sample off for the rarer utis at the hospital? I had NHS test negative for uti even with lots of blood but when private hospital tested they found a strong rarer uti.

[TriangleBingoBongo]

I have this and have Interstitial cystitis.

[Seaweed42]

Do you do a lot of exercise, running or some other change to a new exercise. As that can cause a slight bladder prolapse which might be causing pressure on that area. If so it would be likely to be worse in the evening times, and not so bad in the mornings.

[ponderingitall]

Thank you @TriangleBingoBongo I did have the obligatory google and I thought my symptoms sounded similar. Is there any treatment for this?

@Seaweed42 I don't do a lot of exercise apart from looking after my DS 2 but carry him a lot. Wondered if his weight on me has caused something.
Thank you all for you comments, it's appreciated as it is just so uncomfortable.

[TriangleBingoBongo]

Unfortunately not really, I was prescribed a drug called elmiron. Which was fantastic. But not licensed in the UK and has been linked to a loss of eyesight in long term use. So I stopped that. Or some people take Amitriptyline which is an anti depressant, they use it at a low dose. It’s a nerve suppressant. Apparently it can be a nerve issue, which is why people find this useful.

Now mine is managed almost entirely through diet. If I had a really bad bout I’d have to go back to elmiron as a bad flare is just hell and it’s almost impossible to function.

The biggest triggers seem to be caffeine, alcohol, acidic food. Mine are definitely caffeine and alcohol. I would cut them out for a day or two and not see any improvement so start up with them again. But when I was pregnant and properly cut them out I realised just how much of a difference it made.

I hope you don’t have this but it’s quite difficult to get a diagnoses (took me several years) so it’s useful to be mindful of its existence.

[WhatsitallaboutAlfie1]

@TriangleBingoBongo - v interested in your comments. I too have had endless uti symptoms minus infection for several years and am desperate not to keep taking antibiotics (which sometimes relieve symptoms but mostly don’t since there’s no obvious infection anyway - though as you say there are more sensitive tests, and an interesting article in Guardian said this, which will try and find.) One woman wrote to Telegraph’s doc having sought out a private urologist. Turned out in her case she had a burst abscess on bladder. Once properly diagnosed, she got it successfully treated and never looked back.

[dazzlinghaze]

I know it sounds so basic OP, but are you drinking enough? Because I get these exact symptoms when I've not drank enough water. Once I top up my fluids it eases off.

[WhatsitallaboutAlfie1]

@ponderingitall - sorry to hear your symptoms. There is a medicine that docs can give for overactive bladders which might be worth asking about. Basically relaxes the muscles.

[TriangleBingoBongo]

@WhatsitallaboutAlfie1

For some people IC can be an embedded infection that isn’t treated properly. Mine was brought on by a succession of UTI’s that I don’t think were ever treats properly. My bladder than became inflamed (confirmed by a Cystoscopy and that’s where the constant symptoms came from. Before being diagnosed I was on a low dose of antiB’s for a year which seems to help at the time with just low, manageable symptoms. 6 years later it flared up and wasn’t controllable with antiBs anymore.

I saw a private urologist to avoid the wait with the NHS. Had a Cystoscopy and bladder test (I can’t remember the name but it tested the capacity of my bladder with and without anaesthetic) and I was able to hold a lot more with anaesthetic which showed for me it was a sensation problem.

Re overactive bladder I have taken a drug to decrease the frequency you use the toilet. That really helped initially and I still take it sometimes now.

[ponderingitall]

Thank you all, some really great comments here. I am going to wait for the tests to come back from the doctors and then if they don't find anything will go down the urologist route. There really is nothing like this sort of thing to make you a bit miserable and irritable so I sympathize with all of you who have experienced similar.

[ahran2k]

@ponderingitall do you think that you could have kidney stones by any chance. The last time I had kidney stones , I never had the pain on the sides just bladder pain after the kidney stones were passed from kidney into bladder. The doctor tested me for uti - negative , sent me home with cystopurin to decrease urine acidity which helped a bit and helped reduce the bathroom trips. After a week I passed a kidney stone and life was good. I had bladder pain for 4 weeks before I passed the stone.

[ahran2k]

And yeah I had the tingling feeling too. It was such a strange thing.

[ponderingitall]

Thanks @ahran2k, I wonder how kidneys are detected. I've had a look online and I think the pain for kidney stones may be more intense than the ache I have. Thank you though for the consideration.

[ahran2k]

@ponderingitall it's true that normally kidney stones hurt a lot but if they are small the pain is not intense but just a nagging feeling that comes and goes. Don't know how to explain the feeling but it feels like something is dinging in your bladder. If you are about to have pelvic scan then sonographer will look at the bladder as part of the procedure. Even if you don't have stones you can still use cystopurin , it is available on the counter and is used for bladder pain with no uti.

[ponderingitall]

Thank you @ahran2k that's really useful. I certainly hope to have a pelvic scan and just really hope it turns something up. A strange question but how big are kidney stones when you pass them? Would you know you've passed one for instance.

[ahran2k]

@ponderingitall you won't feel a kidney stone pass if it is less than 3 mm , anything between 4-6 mm you will definitely feel - like something came out but it is not going to be painful. Anything above 7 mm is difficult to pass and cause a lot of symptoms and pain, unlikely in your case because a stone bigger than 7 causes a side abdominal pain that goes in your back. A small kidney stone just irritates your bladder and eventually leave your bladder within 4-6 weeks.

[Elouera]

Sorry you are going through this. I very much doubt this is the case, but my friend struggled for years with pain and UTI symptoms- all of which came back clear! She even had a camera in the bladder which showed nothing, but the symptoms continued. She was even sent for psychiatric assessment as told it was all in her mind!!!! After multiple drs and hospitals, they finally checked the outside of her bladder, and found endometriosis on it!!!! It wasn't in her head at all!

I'd always thought endometriosis was something you were born with, but after a recent diagnosis on 1 ovary, I've discovered it can suddenly occur in your 30's/40's!!! As said, yours sounds more like an infection or something else, but keep this in mind if it continues.

[yorkshireteaspoonie]

I have a similar situation to triangle as above. Struggled with cystitis for 15 years with it turning into the odd UTI here and there (I manage it through diet no booze as triangle mentioned) ..... then at the end of last year it turned into constant pain / tingle / stabbing pain and I've been on low dose antibiotics ever since.

I'm being treated for secondary infertility so my doctor pushed for me to see a urologist. I was referring to my condition as 'interstitial cystitis' but the specialist said they no longer call it that, they now refer to it as 'painful bladder syndrome' googling this gives you much more info and helpful insight than searching for 'cystitis' One of the most helpful things I found was that the 'tingling' we are referring to is actually a 'spasm' and buscopan can help with this as it's an anti spasmodic, id just assumed it was for IBS but it works on anything crampy, even period pain. I'm still on antibiotics and I'm awaiting a cystoscopy for a biopsy but the buscopan is helping me manage the pain.

[KoalasandRabbit]

When I had this for about 9 months about 1/2 the time NHS found an infection, about half said no infection but symptoms exactly the same. It only stopped when hospital gave me double antibiotics for 14 days for suspected pelvic infection they thought had started since an operation a month earlier. Urology via NHS were no help - a year of tests and different doctor each time and just kept repeating tests with no conclusion. Private urologist much better but lost my job and PMI at that point with amount of time off sick. Still have issues 3 years later with bladder - currently going through neurology who have done spine MRI and checking for spinal conditions / MS. 4 month wait for results.

[Clara905]

I'm suffering the same. Sore bladder/ uti type pain but no infection found. Due a urology referral now. Did anyone ever find out what caused their's?