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??

Okay, in the meantime, try the obvious stuff: (you may already be doing many of these):

Drink at least 2 litres a day
Monitor the colour of your urine, if it looks darker than light lemonade, increase your fluids more
No fizzy drinks
No caffeinated drinks
No fresh citrus drinks
No protein shakes (can cause bladder stones and all sorts of stuff)
Ban bubble bath, scented wipes etc - use shower products aimed at people with eczema
Make sure you're not at all constipated
Underwear made from natural fibres, preferably loose fitting
Make sure you pass urine after sex

Then reassess to see if things are improving or not.

Sounds like interstitial cystitis. It can be managed very well with diet as the poster above says. Aim for your diet to be as alkaline as possible so drink mainly water and avoid caffeine, fizzy, alcohol etc. Also go to your GP as amitryptiline works wonders for it as it's a nerve blocker so stops the bladder urges. Artificial sweeteners can aggravate it to as can ibuprofen.

thanks for the quick responses!

Thanks for the advice, I'll try these although the no caffeine thing is my worst nightmare. Coffee addict here (waves) AND just got a Nespresso machine for my birthday If I can never drink coffee again I will be devastated! Is decaf ok in the meantime?? I did reduce my caffeine down to 1 a day which did reduce symptoms somewhat- it'll be hard for me to go cold turkey as I get severe headaches after a day or so with none at all. Fizzy drinks and juices I have no problem not having.

I'll give it a go and see how it goes. If it is interstitial cystitis do you know is it for life?? Is it something I could just get once and be fine again? I already have IBS, I feel like it's pretty unfair if I get another chronic lifelong illness to deal with....

oh and yay no alcohol. So basically my life is over. I'm about to go away on holiday at Easter....

Not necessarily - it can be managed well by diet. There are loads of internet forums about it with good advice. Decaf is better than regular coffee yes as caffeine is a diuretic as I'm sure you know so causes you to go more often and just adds to the problem. I found it hard giving up caffeine but life feels better at the other side once you've got over the hard bit. Amitryptiline worked wonders for me too.

ps re Easter - chocolate is very bad for it too I'm afraid!

but you do lose loads of weight :)

I wish I needed to lose weight- I'm borderline underweight- oh the irony! So you've given up caffeine totally? omg I just can't believe hubby has just paid £150 for a coffee machine. It's so unfair.....

If it's any consolation, I have this - it's diagnosed as a sensitive bladder but that's just another term for IC. And don't worry! Once I figured out my triggers were caffeine and too much alcohol, I got rid of all my symptoms. I have it a year to make sure, then slowly reintroduced things to test it - so I know I can have a few gins, but white wine will send my bladder bonkers. I drink decaf coffee but the odd real coffee is fine as long as I drink lots of water. Caffeine in cold medications though really irritates my bladder. It's not a life sentence, don't worry, just cut out all the irritants until the pain goes, then reintroduce and see what you can tolerate. Oh and in a flare, I drink baking soda in water really calms the bladder down x

PS. We have a Nespresso and the decaf pods are lovely x

PPS. Amitryptiline also worked well for me too x

I've been doing the FODMAP diet (more loosely recently as my IBS seems to be in remission for now) and waiting for an NHS referral for a dietician to help me. I'll probably be waiting till Xmas for that.... and so have you also given up alcohol completely?

Cut out tomatoes! Can be a major trigger.

D Mannose could well be a godsend. Do some research - it has excellent testimonials.

https://www.amazon.co.uk/D-Mannose-500mg-Capsules-Manufactured-Consistent/dp/B012D0BER2/ref=sr1110aait?ie=UTF8&qid=1521575936&sr=8-10&keywords=D+mannose

Ah molehill79 you have given me hope thank you so much! At least having IBS means I'm used to eliminating and reintroducing, and guessing, and trying certain foods, etc etc! It just sucks as I'm kind of in the middle of trying to figure out my IBS triggers with the FODMAP diet and really need to be cut a bit of slack!! Thanks also for the medicine suggestions- I guess i should wait for a proper diagnosis first but its good to know there are drugs out there that can help. So Molehill did you have to go through lots of tests to get your diagnosis? I've had what I thought was an irritated bladder before (once it was after drinking red wine) but it always went within a few days, this time it just hasn't gone away.

I'm also relieved I don't have to sell my Nespresso machine just yet or give up the (thank fuck, I love the stuff) I don't actually drink much at all but a couple of Gins on a Friday night keep me sane (I have 3 kids, say no more)

thanks so much ladies. I've been feeling really down and sorry for myself and needed a bit of a lift. DH is trying to be sympathetic but tbh he struggles and him badgering me for you know what is starting to annoy me. I don't want sex when my bladder feels like it's being squeezed with a vice, ok?? sigh....

Hot off the press today , regards UTI testing a negative result does not mean no UTI.

link.springer.com/article/10.1007/s00192-018-3569-7

OP I've had IC for over 30 years. :(
It started after a UTI. I was left with frequency, burning and urgency.
At times I was housebound due to needing the loo every 20 minutes. School runs and normal things like car trips were a nightmare. Theatre and cinema were out.

I have managed to reduce the symptoms by diet and at one time took Atarax which is a type of anti histamine which seemed to calm it down.

I live like this:

only drink boiled water or bottled water and some herbal teas. No tea, coffee, booze, fruit juices or fizzy drinks.

No spicy curries.

no citrus and no tomatoes.

no chocolate (high in caffeine) except maybe 1 square a day now and then.

no wheat- I think I am intolerant so am gluten free.

no onions

I am also fastidious about cleaning my bum after a poo- wet wipes.

I hope things improve.

ps I refused invasive cystoscopy and at the time my lovely GP was happy to treat me based on symptoms and years of no-bacteria samples , but symptoms.

@sunshine05 this could be me writing! Literally all details are the same. As you might have seen from my post, they seem to be investigating my ovaries first and foremost, but god I'm hoping it's not related. Perhaps I've been mistaking 'ovary pain' for 'bladder pain'? Who knows!

PS. I drink 1000+ cups of tea a day and hate drinking water but I'm really trying hard!!

Another one echoing the:

No citrus, caffeine, alcohol , chilli (but mustard is fine), raw tomato skin.

Yes giving up caffeine is hard but it’s worth it. I now allow myself 1 cup of tea a day.

You could also try taking cranberry extract (not juice) daily.

The reason for avoiding all these triggers was explained to my by consultant urologist as them all being things which will affect the lining of bladder if it’s already inflamed (which can happen after frequent or unresolved UTIs). Which I think is slightly different to IC as explained to me, but anyway it does work!

1966 Thanks for that link! Very interesting.

My consultant also said that once bladder lining is sensitised, a very low grade infection (eg small number of E. Coli) can cause symptoms (frequency, pain). In a normal bladder there would not be symptoms felt, and this is likely to be at a level which is not picked up in urine strip / urine analysis.

Teamuncher I haven't seen your post, my gp has ordered a blood test to rule out anything like growths/cancer, other issues with ovaries or womb. I must admit those possibilities hadn't even crossed my mind but I'm glad he's checking these things. (and at the same time trying to reassure myself it won't be anything sinister) I'll try and find your post. I hope you're ok? What tests are they doing on you?

Sandyshores do you ever have no symptoms? My IBS comes and goes and mentally I can cope with it as I have periods of feeling 'normal'. When it's bad sometimes I feel so down and don't think I could cope if it was bad all the time, so if my bladder doesn't settle down I don't know how I'll cope. I can't cope with pain and urgency ALL the time. It's awful.

I've stopped my protein shakes and my bladder seems better already and I've also reduced my coffee/tea to 1 a day (the rest are decaffeinated) and it seems to have helped. I don't think I can eliminate my morning coffee!! I had a headache all yesterday as it was and I knew a nice strong coffee would get rid of it.

also I'm happy to cut out stuff and see if it helps- but again, just like my IBS this impacts my family eating/meals so much. I've already cut out onions and garlic to help with my IBS and to take tomatoes out too means I can't even sit and eat family meals like spag bol, chilli con carne etc. I feel like a child but it's so damn unfair. Everyone around me seems to eat and drink what they like. I feel really really resentful of my body right now.

Checking in. Just being referred to urology after 4 lots of microscopic haematuria and 2 UTIs.