Painful bladder

[ImAvingOops]

Hi all, looking for a bit of advice on what treatments have worked for you.
I have a really achy bladder and the urge to wee constantly. Have had swab and numerous urine test and there is no uti, no bacterial infection, no STI, no thrush. Dr says bladder looks a bit sore. Have been referred to ultrasound and urology but waiting lists are long and I can't afford private cytoscopy.
So I'm going on a working theory of interstitial cystitis, which has urgency to pee, pressure, sometimes back pain. I'm so uncomfortable.

Has anyone had treatment from the dr which has helped. Been reading lots of contradictory info about what to eat or not to eat, what supplements are best.
Have bought aloe Vera capsules, magnesium capsules. Been reading about taking antihistamine and antidepressants to relax bladder and block pain signals. Any advice would be great

Hi @ImAvingOops
I was diagnosed with IC around 6 years ago, purely by chance as I had a non-related kidney operation, and asked my urologist about symptoms identical to yours. He arranged a cystoscopy which confirmed it.
It's a poorly understood condition, and none of the GP's I had seen previously had suggested this possibility, meaning I was suffering for years with no treatment.
I'm on a mixture of prescribed treatment, and "self-prescribed" treatment.
I did LOADS of research - you have obviously done some too. There is an IC Association, which is where I got most of my info from.
What I'm on:
Monthly Cystistat instillations - done on an outpatient basis by urology nurses, arranged by my consultant urologist. Cystistat is a liquid inserted via a catheter into your urethra, which gives the bladder a temporary protective lining. You can be shown how to do it at home.
25mg Amitriptyline at night, as a painkiller.
I also take a supplement called D-Mannose - pill or soluble powder, (health food shops or online).
And antihistamines. And my consultant recommended daily, preventative Potassium Sulphate, which is the main ingredient in sachets for cystitis relief, from pharmacies.
Unfortunately acidic foods can irritate the bladder, and I was surprised as to how many foods fell into this category.
The main ones are citrus fruits, but also strawberries, tomatoes, and.......chocolate 😥 Caffeine, and alcohol, too 😥😥.
I'm afraid I'm not always great at keeping off the choc and booze - one of the nurses told me clear spirits like gin and vodka seemed to do less harm than, say, wine or beer.
There is, up to now, no ultimate cure for IC, but it can be managed.
But, do LOTS of research.
Hope this helps

..........forgot to mention there is a drug called Elmiron also, which can only be prescribed by a consultant. I took this as an alternative to Cystistat, when the outpatient treatment stopped because of Covid.
But it gave me diarrhoea, so I went back on the instillations as soon as the treatment started up again.

Thank you so much for the reply. I'm sorry you are suffering too. I just called a private hospital to see how much a cytoscopy would cost - £2,700! So out of my price range. I don't have any burning when I pee, so would the potassium sulphate still be helpful do you think? Is it for burning or does it do something else?
I bought the daily Loratidine antihistamines and have started taking one a day, but only came across this a few days ago so will see how that goes.
Have also just given up alcohol and chocolate and coffee (basically everything that makes me happy).
Have also bought a pelvic floor wand to help relax tight muscles, which the women's health physio said might help. And upped my HRT.
Does yours flare up during your period? Am trying to track any patterns but as things stand I have constant discomfort with occasional really painful flare ups.
Will ring my dr tomorrow about Amitriptyline. Been using soluble aspirin and ibuprofen as they are anti inflammatory but they don't really help.
Can't wait to see the urologist. Thank you for telling me what I need to ask for x

You're welcome. Can't help with the period issue as I'm past the menopause.
Amitriptyline is known as a good painkiller for this type of issue, not just as an antidepressant.
I take Potassium Citrate as my urologist recommended it as a preventative measure for IC - it makes your urine less acidic. It tastes vile, but I mix it with water and squash. I trust him, and would drink gnat's pee if he said it would help!
I know what you mean about giving up nice things to eat/drink - it sucks! I can actually feel my bladder starting to burn up after a few sips of red wine.
To reassure you - my IC is largely under control. It's just that I love chocolate and wine! 😭

The tests for uti's are historically inaccurate. In fact the NHS website has recently updated information to this affect. I had the same symptoms with a clear urine test but luckily due to symptoms my gp believed I still had a urine infection. After lots of different antibiotics I was eventually put a long term course which eventually cleared up my infection. There are Dr's that believe IC doesn't exist but is an untreated infection. They can become embedded in the bladder.

@slightlypeckish

The tests for uti's are historically inaccurate. In fact the NHS website has recently updated information to this affect. I had the same symptoms with a clear urine test but luckily due to symptoms my gp believed I still had a urine infection. After lots of different antibiotics I was eventually put a long term course which eventually cleared up my infection. There are Dr's that believe IC doesn't exist but is an untreated infection. They can become embedded in the bladder.

@slightlypeckish Yes, I've recently read about this, but didn't have time, at the time, to digest it fully, and it went out of my mind. I'm going to look into it more, thanks so much for highlighting this info. Quite galling to think I, (and countless others), may not have had IC at all.....

Are you peri or menopausal?
I had very similar symptoms and had all kinds of investigations including a flexible cystoscopy and biopsy. All came back normal.
Turned out it was the menopause. HRT stopped it. Very common apparently and woefully under diagnosed.

I should say that the private urogynaecologist I saw also diagnosed me with IC. I was put on solifenacin. Pointless in my case. HRT (Evoril Conti) worked.

I had something like this in my early 20s though I don’t know if it was actually interstitial cystitis. No actual infection but all the UTI symptoms. I ‘cured’ it by drinking lots and lots of water constantly - I was going to the toilet every 20 minutes but it did gradually get better. My theory was that I diluted my urine so much that it was basically water in my bladder which allowed it to heal as it wasn’t being irritated.

Actually I just remembered I also had a period in my early 30s where I kept getting recurrent UTIs and my GP sorted that by giving me an antibiotic prescription with instructions to take one prophylactically every time I had sex.

Thank you both. While I was waiting for my swab results the dr gave me a course of vaginal antibiotics as well as 3x canestan pessaries and a tablet. I will make an appt tomorrow and ask if I should be on long term antibiotics. When the dr did the swab, she said my bladder did look sore (as much as she could see) - could that be uti as much as IC?

I am fortunate in the sense that my dr does acknowledge that IC is real, but they've not offered me any help beyond referrals to ultrasound and urology.
I really do appreciate both of you taking the time to reply x

The GP said the alternative was to put me on a six month course on antibiotics - that was the next stage if the sex antibiotics didn’t work. I don’t suppose they’ve given you a really long course? As PPs have said, sometime they can’t detect an infection but there is one.

MWNA, I am on Everol patches (the ones where you have a few patches of estrogen and then a few estrogen and progesterone combined). Have added a pump of gel and also have vagifem pessaries. This helped with the first bout of pelvic pain. It was the pain which prompted me to start HRT in the first place, but it doesn't seem to be helping now.

I had the same symptoms, for years, and the GP treated it as an Overactive Bladder, prescribed various tablets, which didn't make any real difference. I eventually was referred to a Urologist and had scans, tests, etc. I asked if I perhaps had interstitial cystitis. The Urologist said that he very rarely sees a patient with that.

I was told to measure what I wee, and also what I drank. I had to use (2 separate) jugs to measure input and output. I was seeing 20-30 times a day. The normal amount is 8 times. It turned out I'd been drinking 7-8 pints of fluid daily! Far too much. I was advised to cut out caffeine, so decaf coffee and tea, no chocolate bars, cocoa, cola.

I was skeptical, but within 3 weeks, the difference was astonishing. I now drink about 3 pints a day (some coffee, some water) and wee about 10 times a day.

Yes a uti can irritated and inflame your bladder. It took moths after my infection cleared up for me to be free of bladder pain. I had a uti for over 6 months. After the infection cleared up I followed an IC diet for a while which I think helped with the inflammation and recovery.

Could you pay a smaller some for a specialist consultation? They may advise you on relief whilst you wait for your cysoscopy, or prescribe you some medication which could assist in a diagnostic of an alt condition?

How would the GP be able to see into your bladder to know that it is "sore"? The only way to see inside the bladder is a cystoscopy.

Did the women's health physio have a possible diagnosis? As pelvic floor dysfunction (muscles too tight) can mimic IC. Did she show you how to use the wand?

Silver, possibly tmi but I'm too scared to go anywhere near dh at the moment. And don't feel like sex when my bladder feels this uncomfortable! This is literally ruining my life. I spent the weekend lying on the sofa with a hot water bottle and a ton of painkillers which didn't work.
Have been drinking lots of fruit tea but will add in more water and see if it helps.
The dr said my last urine test was neutral, whatever that means. I thought it had to show infection or not!

Sounds horrible OP. I’ve suffered with on and off UTIs all through my twenties. And tests never showed I had any.

Eventually the only thing that worked was DMannose supplements. You can get them on Amazon. Life changer for me.

@MWNA

Are you peri or menopausal? I had very similar symptoms and had all kinds of investigations including a flexible cystoscopy and biopsy. All came back normal. Turned out it was the menopause. HRT stopped it. Very common apparently and woefully under diagnosed.

I have had this for about two years now. GP has referred me for an Ultra sound scan of bladder and kidneys and I have an appointment within a few weeks, so not sure if it has been put through on an urgent cancer pathway or something ? Actually since the scan was booked, I have been quite a lot better and I don't really know why. I have cut out coffee and wine. I have also started HRT but not sure whether that would have any effect ?? My iron levels are also low, so I am worried I could be bleeding from the bladder or something although there is nothing obvious to see.

I’ve had similar and have never really gotten to the bottom of it. I had a urethral dilatation 10 years ago for persistent UTIs. Then I started getting symptoms again, sometimes my urine would test like it was infected, sometimes it wouldn’t. For lack of another solution, I was given another dilatation. I have found Amitriptyline to help (though i find it hard to get up in the morning) I cannot drink caffeine or white wine as it burns like crazy. Red is sometimes ok. Beer is fine! I am just waiting for another attack really. Hope you get sorted. PS my urologist recommended Yes lube for sex to remove any friction. That helps too.

Moppincrazy, the women's health physio said my pelvic floor muscles are tight. I don't know how though (4 kids). I've watched the YouTube video on how to use the wand and also talked it through with the physio on the phone. I also do the stretches to release the pelvic floor. I've kind of been thinking of these as separate things.

Is it odd that I've had no burning. I seem to pee okay, although the pressure feeling intensifies when I wee and I don't get that relief feeling?

Look up detruser underactivitiy. I have this and have more your symptoms. I use intermittent Catheters and it reduces everything a lot.

So, plan for tomorrow is to get some d mannose and potassium sulphate. Ring dr and discuss getting Amitriptyline and more antibiotics.
Continue with loratidine tablet and the diet changes to cut out alcohol and chocolate and caffeine.
Continue with pelvic wand and pelvic floor relaxing stretches.
Drink more water and nothing that can irritate the bladder.
Have I missed anything ?