Bladder pain and urgency- no UTI. desperate for answers!

[sunshine05]

So I've had urgency and frequent urination and intermittent bladder pain for a month or two now. Initially I thought it was a UTI and urine test showed some bacteria, doc gave me antibiotics but they did nothing and the test came back from the lab as normal. So now I've got a private referral but it's in a months time and I'm in pain and so uncomfortable. I don't know if it's an irritated bladder, or the horrible interstitial cystitis or something else. I have a blood test booked for this Friday to rule out more sinister possibilities. I swing from not being too worried to thinking that something awful could be wrong with me. Yesterday I had a eureka moment thinking it could be the sweetener in my protein powder I have in my shake after workouts but now I'm thinking it's unlikely- although I'm going to cut it out and see. Side effects of sucralose (amongst other horrible things) is bladder irritation/problems so it's worth a shot. But I'm just so fed up and miserable. At the moment the pain is quite severe. I don't know how I can cope with this for a month before getting more tests done. And I'm terrified that this could become a chronic illness that I will have to live with for a long time. Anyone else had similar issues, positive outcomes? Anyone have any ideas/thoughts??

...I'm also mostly gluten free (not sure if this actually helps the bladder) but can tolerate a small amount on the low FODMAP/IBS diet.

Chrisinthemorning what's haematuria? So does that mean you had bacteria in your sample? The antibiotics I was given didn't work and then my urine sample came back clear so I'm assuming mine isn't a UTI

1966gettingold I read the Abstract of the article link you posted, interesting- and trying to get my head round the medical jargon- that means that they treated patients with negative results for UTI's and their symptoms improved? Because they had bacteria but it just wasn't picked up in the tests- is that the gist of it? Thing is, where does that leave people like us? We could show this article to a doctor but the facts are they have to go by test results otherwise they're giving us antibiotics and not knowing if we actually have bacteria or not? The antibiotics I was on for a week did nothing to help my symptoms. I was hoping SO much I had a UTI that could be quickly cured. I just feel so frustrated that there's no quick fix to my issues...

sunshine haematuria means blood in the urine. Microscopic haematuria = not visible to the naked eye but picked up in tests.

ah I had that too Maria1982 on my stick test at the doctors anyway.

sunshine You asked if I have symptoms- sometimes, yes, usually after I've eaten something that irritates my bladder- like some grapes, last week - too acidic.

I suggest you are really strict with yourself on diet and drinks to see if this can prevent things getting worse. Coffee and tea even caffeine free can be irritating. The headache from no coffee is a withdrawal symptoms; push through it for 2 days and you will fine better.

The debate about some bacteria being in the bladder has gone on for decades. It's not clear. I'd hate to think I'd had bacteria for 35 years! In my case I think it's more about the lining being damaged at the time maybe by too many ABs or whatever happened at the time.

I think some people may have low grade infections that aren't picked up and long term ABs work, others have something different.

Try to do the best you can with diet and see how it goes- good luck.

for all, this is no fun!
I do think a month is ages to wait for a private referral- I saw the GP yesterday who advised referral and my consultant appt is a week on Tuesday. Is it someone’s especially sought after?

Chrisinthemorning well the first appointment they offered is only a couple of weeks away but I'm on holiday (away over Easter) then the week I get back the consultant is away! So just bad luck I guess with timing. I just don't know how I'm going to get through the Easter holiday with no Easter chocolate, coffee or alcohol - especially as we're going away/socialising etc. I guess I'll just proceed with caution and see what my bladder can put up with!

SandyShores it'll be almost impossible as we're staying with family (Sister in Law) and erm I'm not sure how accommodating she'll be- whatever she cooks we'll be getting, I won't have a choice. I guess I'll just have to make up for it the week after and then when we're back home I'll be in full control again.

Today was weird, not too bad all day then about 3pm I needed to go 3 times really close together then it calmed down again this afternoon. I don't understand. How do you figure out what you ate causes it - how long would it take for something to reach the bladder?? I did a HIIT workout at 2ish - would exercise cause issues??

by the way is there anything I can take/over the counter medication to help ease it whilst I'm away?? I'm guessing my doctor won't give me anything until he knows what the problem is...

ah... i did have something covered in chocolate around 11pm... could the chocolate have caused it?

Chocolate is a chief irritant- contains caffeine.

When you are away can you not explain and say it's a health issue?

You can take 1/2 teaspoon of bicarb of soda in a glass of water, 3 times a day. This will help soothe the bladder. You shouldn't do it for months on end as it can cause high blood pressure.

You can also try Zantac (ranitidine) which is an antihistamine for stomach ulcers; there is some evidence it can help but you need quite a few tablets a day. It might take a few days or weeks to work.

There is a bladder support group online which provides help and a forum. It used to be called the COB Foundation but now has a different name- sorry, can't link but you can find it.

awesome. So now I have urethral pain. And my IBS is worse. I've now googled it (dammit i hate google) and it could also be urethritis or urethral syndrome. I have symptoms similar to both of those. My urethra is painful and I also have burning. But I think I may also have some thrush from the antibiotics I took a few weeks ago for my supposed UTI that I don't have. I'm so frustrated and worried my symptoms are going to get worse when I go away. My blood test results should come back Wednesday, I'm going on holiday on Friday. Maybe I should go see the doctor if my urethral pain gets worse? It's uncomfortable already....

frequency of urination isn't too bad - maybe once an hour? But it varies. The urethral pain is quite bad and I had some sensitivity before but now it seems worse

So blood test results came back early and it's all clear- which is a relief! But also means it's not going to be a quick fix. Nearly a month till my urogynae appointment. I've emailed to see if there are any cancellations. I cried at the doctors today, she told me to take ibuprofen and some sachets for cystitis that can reduce the acidity of your wee. Hopefully they help but it's just trying to dull the pain, it won't make it go away. I think its all stress related. I'm stressed all the time bringing 3 kids up and its making me ill but what I can I do?

The packet of Cystopurin (granules to reduce the acidity) has artificial sweeteners in it. I thought they were supposed to irritate the bladder?? I've been trying to avoid them?? FFS. Everything is a contradiction. Not sure whether they'll help then....I'll probably get more pain from the sweeteners. Sucralose seems to affect me as I was getting symptoms after drinking my protein shake. There's aspartame and mannitol in this one.

Instead of the packets of stuff use bicarb of soda in a tumbler of water.

Just thought I would say hi and that I was in a very similar situation to you last October. I had cystitis symptoms for 3 months which didn't really clear up properly with AB. I went to the doctors around 6/7 times had 4 lots of AB and was eventually referred to a Urologist. I always had small traces of blood in urine samples and white blood cells. I was diagnosed with Interstital Cystitus (IC).

I was told that the way to manage it as others have said is through diet. It is very restrictive at first, but you do get used to it and you learn what is bad for you and what's ok. Some of the things that are generally known to irritate it, are ok for me and vice versa. Since I've been managing my diet, symptoms have been much better. It took about 6 weeks for things to calm down, then I get flares every now and then if I've eaten something funny and also times of the month seem to affect it. It is nowhere near as bad as it was when I was first diagnosed. If I've eaten/drunk something and I'm ok 4 hours later, it's generally fine.

I would recommend you are super strict with your diet for 6 weeks to try to calm it all down, then introduce new things back in. I'm going to try to post a photo of the leaflet I had with bladder friendly and not so friendly foods.

I would agree with what others say that the sachets are probably not helping.

Information sheet

Has anyone been prescribed or tried long term antibiotics- one a day for 6 months?
I had this when I was younger and it really worked for me so will be asking for it again.
www.cutic.co.uk/a-classic-case

Thanks gegs73 is that an nhs leaflet? I can read some of it but not all as I can't enlarge it enough. I'm already on a fairly restrictive FODMAP diet for my ibs (although still waiting since Dec for a referral to a dietician so I can properly reintroduce foods!) so having to do this too will really restrict me- I'll be cutting out more foods that were safe on the FODMAP diet but not safe on the IC diet- it's a nightmare. Do you avoid alcohol and caffeine 100%? I don't mind eliminating any foods if I have to but if I can never have a drink or a coffee I think I may struggle- it's part of the enjoyment of life to have a bit of the things we enjoy now and then! It's good to hear it can calm down and be managed as tbh I'm terrified of having another long term incurable condition (Had IBS since a child) but then I guess I manage my IBS and keep flares at bay most of the time so it can be done.

Today I have hardly any urgency but still aching/pain in my bladder area, feeling better just for not having to rush to the loo all the time.

Chrisinthemorning I don't think I'd want to be on long term antibiotics unless I absolutely have to. Just from the bloody 7 day course i had a few weeks ago I'm suffering the after effects- thrush and my stomach is completely out of whack- rushing to the loo and horrible bloating. Going to have to take probiotics for a while to get my gut flora back on track. I know antibiotics are great in so many way but so evil for my guts

but it is worrying if results are coming back negative and yet we still have a bacterial infection. My doc has asked for me to do another urine test tomorrow as I did press her, saying could the infection maybe not have been picked up the first time. But the problem is if the sample is sent to the lab and it comes back clear, the doc won't administer antibiotics just because we still think we have an infection, so there's not much we can do surely?

I had something similar, continued after being treated for a confirmed uti but subsequent tests said it should have gone.

Anyway, turns out my mirena coil had moved and was causing the discomfort and urgency.

Just thought I’d mention it in case you had a coil.

How old are you OP?
Could it be bladder issues relating to menopause?