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 had mine for a longstanding antibiotic resistant UTI and microscopic heameturia. Nothing was found and I was discharged.

Haven’t RTT but have you had a high sugar or high caffeine diet?

I got exactly your symptoms from doing this when I had a stressful time. It cleared up quickly when I ate a better diet.. it comes back when I don’t!

I think it’s called irritable bladder

Low oestrogen levels can cause bladder problems yes.
Some info here
menopausematters.co.uk/article-bladder-problems.php
Perhaps worth bearing in mind when you have your appt.
I have had similar issues which are better since having been prescribed an oestrogen pessary.
I have in the past been given loads of antibiotics for utis which wreaked havoc with my system (gut flora out of whack then recurrent thrush).

Very interesting thread to me, my sympathies to all. I recently had a flexible cystoscopy because I have blood in my urine. It didn't hurt but triggered a rotten infection. I have been prone to UTIs since late teens. What did help me was cranberry extract tablets not juice (as someone else has mentioned here) taken daily. I still get UTIs and general symptoms regularly but not as bad, now. Amazingly, the cranberry tablets also helped somewhat with my stress incontinence - I thought it was all muscular but obviously the constant infections were making the incontinence worse, too.

Bolshybookworm mild I could handle, mines been awful- bloating so much I'm like a balloon and the pain is awful- so I'm getting bad IBS pain on top of milder bladder pain! Yeah maybe my gut is just more sensitive!

Tanfastic that's good to hear that it wasn't too bad- I'll remember that if I need to have one done

Calledyoulastnightfromglasgow I guess you could say my diet was high caffeine- I would regularly drink 1-2 strong coffees a day plus 2 teas, but my diet is pretty healthy- cook from scratch, health and fitness oriented though I probably do eat too many of those health bars/flapjacks that are high in sugar. I have a sweet tooth so probably do have too much sugar. I'll bear it in mind- battling my sweet tooth/caffeine addictions are an ongoing thing. I've dramatically reduced my caffeine and am quite happy on decaf tea though still allow myself 1 coffee a day

Chrisinthemorning yes it's so nice- I keep thinking every now and then, why don't I need a wee?? but I'm now scared anything will trigger a relapse so keeping my caffeine low and haven't done a workout since the weekend. Hopefully the urologist will have some info on how I deal with it all going fwd- and what tests I need etc. My guts are causing me more issues - #allthebloating - why can't they invent antibiotics that don't destroy gut flora

Sunshine - I would put money in irritable bladder or the wrong type of bacteria proliferating. Do you have gastric symptoms too?
I think if you go cold turkey with the caffeine and reduce your sugar, and take a good probiotic it will clear up. Consultant won’t tell you this though!

Because it’s normally gut bacteria (eg E. Coli) that are the problem in UTIS, sunshine

Some antibiotics are worse though eg my go won’t prescribe cefalexin anymore because the effects it has on the gut flora make you more susceptible to horrible C. diff infections (in frail, elderly people, but anyway ).

*gp

OP Sugar is actually very acidic in the body and it sounds as if you could have candida if you are feeling bloated all the time. Sugar feeds the candida and if you have had ABs lately it's possible your gut flora is all over the place which will make your IBS worse. To overcome this you need to cut out sugar and take a rally good probiotic.

Things like flapjacks are very high in sugar; the ones from M&S for example are 36 gms sugar each which is more than the total recommended daily allowance of 30 gms.

I think what you will find is that this is something you have to experiment with and find your own way through. Urologists are not usually terribly good with women's bladders- they specialise more in men's bits. I saw two, privately. One wanted to stretch my urethra under a GA ( no way!) and the other offered meds . The only improvement I got was through diet, estrogen once I reached menopause and reducing stress in my life . I suffered very badly for a long time which affected my career as some jobs were incompatible with needing the loo so much.

I suggest you cut out the sugar, look at probiotics, and cut out caffeine for a week or two.

@sunshine05 you are literally me at the moment! Exact same going on here. Just a thought, but as @trickyex mentioned hormones, I've often wondered if mine is linked to weaning my DS from BF Sounds mad, but it's all coincided and I am so sensitive to hormonal changes... irritable bladder is an understatement!! So IRRITATING!

Sunshine how did it go?
The more I read the more convinced I am that this is a Chronic UTI problem. For this reason I have changed my appt and have booked to see a different urologist who will test for and treat deep seated Chronic UTI. Means I have to wait until 16th April to be seen but I feel a lot more confident.

The urologist was great. I did a pee test (weeing into a funny looking toilet that measures flow rate and volume) and he said that all looked good (my god I was bursting when I got there as they said have a full bladder) did another urine test that showed no bacteria but some blood. He said to me it sounds like I have an inflamed/irritated bladder, the inside, he said, looks a bit like eczema and it can flare up if you're susceptible to allergic reactions etc. I said I don't really get them but he said my past doctors notes suggest otherwise- the odd case of conjunctivitis, IBS is a reaction as well. And IBS often goes hand in hand with this bladder issue. He didn't call it IC but he has booked me in for a flexible cystoscopy on 20th April. Yikes, I really don't want it but the receptionist reassured me it's not as bad as a smear (in that case no problem!) and is over after 10 mins or so. He's also told me to take a daily antihistamine as it can help calm the bladder down. And to cut out all irritating foods/drinks, including caffeine . I'm feeling fairly positive, he reckons all being well with the treatment, he expects I can get back to eating/drinking what I like once its settled down

Calledyoulastnightfromglasgow and sandyshoesmissingshoes you're both probably right re the sugar. I don't tend to go for the obvious culprits like chocolate bars and fizzy drinks but tend to kid myself the healthy bars are ok, or granola etc. I think that caffeine often goes hand in hand with sugary snacks too - it certainly doesn't go with a piece of fruit or fresh salad! So maybe cutting out the caffeine will make it easier for me to avoid the sugary treats. It's just amazing how many people live on sugary crap, it's all around me- people are always meeting for coffee and cake- its so hard to be really healthy. BUT I am interested in nutrition and fairly clued up so hopefully I can make better choices and see how it goes. However this week visiting family in NL will be a write off- they have the worst diet and I'm dreading it. You could be right re candida, I certainly still have thrush and it's all linked isn't it. I also need to get some more probiotics- mine are out of date! Any recommendations on decent ones that won't break the bank??

oh and urologist said HIIT sessions could be aggravating my symptoms, so I have to lay off them for a while (I'll have to find other ways of getting fit for the summer!) and he told me to book to see the resident physio there so she can help me with the pelvic floor area/give me help with exercises I can do which is great.

and the stress link. Yeah I'm sure it is related, but I don't know how to tackle this one. I know I'm stressed a lot of the time, I feel it in my body- all over. I have to sleep with a mouth guard because my jaw is so tight and I clench my teeth in my sleep, I have IBS which flares during stress and now this. My hubby is away a lot with work and I am frequently overwhelmed and exhausted from looking after 3 kids. Going through a tough patch with the 9 year old - he's a real handful. I really need to get my stress levels down but don't know where to start.

Hi,
I had interstitial cystitis for 12 years and went to see a specialist last year who prescribed high dose antibiotics which I am still taking (will stop in a couple of months). I'm about 90% cured having previously been very ill and in chronic severe pain, peeing 8 times a night, unable to travel anywhere, on daily gabapentin and tramadol, and having to have a completely restricted diet (and no alcohol).

I'm only telling you this to reassure you that if it is 'IC' then it doesn't have to be for life.

In the meantime, I'd probably go for the tests they are offering you to rule out anything sinister (unlikely) and then go from there.

Oh, and the specialist I saw is the final author on the paper that is linked to on page 1 of this thread.

Good luck with the cystoscopy sunshine. If you struggle at night it might be worth taking an older sedating antihistamine like piriton? I have been and it means I sleep.
Dacres - would be interested to hear more about your treatment?

Sunshine.

I’m one of the patients who the Professor in the linked article is treating. So yes, I get given antibiotics even though all my standard nhs tests come back negative for an infection. Prof has shown by his test (looking at fresh urine under a microscope) that I have an infection......I have a raised white cell count and raised epithelial cell count. His mantra is that if you have uti symptoms then you have a uti no matter what a dipstick or standard lab test say. I’m luck in that I’m being seen on the nhs by him.

His clinic was shut to new nhs patients about two years ago but yesterday the trust board agreed to open to new nhs patient......however they are initially limiting it to two new patients a month and he has a lot of people on the waiting list but get on the list as they may let everyone in suddenly. I just asked my gp to refer me and I travel from the other end of the country to see him. I’ve been symptom free for years but am not cured, if I stop the antibiotics I get symptoms. Btw, he is not a fan of cystoscopies at all.

He says that cystoscopies can make things worse. Not sure why.

I'm basically one of these people (except I'm not as I didn't attend the clinic til 2016)
link.springer.com/article/10.1007/s00192-018-3569-7

I've been taking high dose cefalexin with methenamine. I can now eat/drink whatever I like, I'm on no painkillers, and I get up to wee once a night. My bladder is still slightly sensitive at ovulation/prior to my period but about 1% of what it was before. I'd heard about this clinic years ago but was sceptical until I got pyelonephritis last year and my bladder symptoms briefly subsided after IV and oral antibiotics. Going was the best thing I ever did, especially as the doctor in charge is due to retire very soon. Feel incredibly lucky as my quality of life was pretty poor and I was struggling to work and look after my 4 year old. I'm 43 now by the way, and was about 30 when this all started

snap MrsJoshDun

I travel from the North East to see him, although my last appt was over the phone.

I'm a private patient, he charges £250 for the first appt, £200 for subsequent appts and £70 for a phone appt. So not outrageous and for me definitely worth it