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??

Chrisinthemorning I'm having trouble following the thread about the consultant- so is Mr Ali one of the ones that specialises in embedded infections that I've been hearing all about in my FB groups? Along with Mr James Malone- Lee? Are you paying privately? How did you just change specialists? I'm with Bupa and not sure I can just pick and choose who I want to see, maybe i can?

I must admit I'm sceptical too- well there seems to be those who believe Mr Malone-Lee is almost like a God who's cured them and all the other urologists are quacks, which rubs the other patients up the wrong way- the ones who are seeing the other urologists who are being treated for IC. I'm new to all this so don't know what to believe. I'm worried that if I am going down the route of seeing someone who's following outdated medicine then I'll be in pain for years unless I change and go and see one of these new 'pioneers'! BUT I also know that not everyone who has these symptoms has an embedded infection, some do actually have IC and can't be helped by taking long term antibiotics.

It's so frustrating that there's this division and no clear winning treatment. I guess I have to give my urologist a chance and see if he can make me better and if not I'll go and get my urine looked at under a microscope and see if the antibiotics route works. The one thing that worries me is the side effects. Apparently it can cause kidney damage- perhaps it's a really low percentage, I don't know. I'm sat here drinking a coffee typing this I might be mad but I'm so desperate just for one! I downed a glass of bicarb of soda with water, then the coffee then I'll have another glass of water after. Crossing fingers I'm ok. I've also ordered low acid coffee and going to try the cold brew method to lower acidity any more. I've been fine cutting out sugar, chocolate, alcohol but this no coffee thing is killing me!

Ohyesiam is d-mannose for bladder inflammation or just to fight infection? I have heard of it, though decided to start with aloe vera, serrepeptase (which is also for inflammation) and probiotics. If they don't work I'll certainly give d-mannose a go! Oh and I've also ordered some marshmallow root tea!

the thing I'm wondering about the embedded infection possibility is that I've never had a UTI or cystitis in my life. Perhaps people who get recurrent UTI's are more likely to have this? I don't know- just wondering if there are a few different issues and some people fall into that category, some into others. There's also the PFD area- I think I suffer from pelvic floor issues - with my prolapse. I'm really excited to have 6 sessions of physio- I'm positive it's going to help me. Have to wait till next week for my first session.

This sounds like IC. I was diagnosed with this and cured myself using Chinese medicine with the help of a chinese Dr in Cardiff. You could also contact Dr James Malone Lee who believes this is an occult bladder infection and prescribes large amounts of antibiotics. He used to be based at the Whittington in London.

He was lovely. His wife is a dentist (so am I😄) so I related to him.
He did a pelvic exam and has ordered an ultrasound. I’ve to send urine samples to Focus Medical Clinic for broth culture.
He may want to do a cystoscopy (GA agreed no issue!) but we agreed to see the results of the non invasive tests first. I have a holiday coming up and wouldn’t want cystoscopy before that.
He suggested possible treatment would be Hiprex plus 6-12 weeks of an appropriate high dose antibiotic (depending on what the broth culture shows). He also mentioned naturals like oil of oregano and d mannose.
I was able to see him through Bupa as he’s a Bupa recognised urologist. I think it was OK as I swapped before I had seen the other guy- once you’ve been seen I think it’s harder to switch.
I understand your quandary about treatment. For me it’s a no brainer- I’ve had UTIs loads in my life including a course of antibiotics for 6 months before- so am pretty convinced that’s what is going on with me.

BTW he does believe in the Chronic UTI science (saying theory sounds wrong as published papers now) but doesn’t treat in quite the same way as Prof. I can see him through Bupa and he’s fairly local so happy to stick with him for now.
I can live without caffeine- I drink earl grey tea and don’t like coffee and decaf earl grey is the same really. It’s the alcohol thing that’s killing me! I miss Saturday night wine so much.

It is worth remembering that interstitial cystitis is a diagnosis of exclusion. Basically if they can’t find any other reason for symptoms that’s what they call it. Don’t let someone diagnose you with it until all other avenues ruled out IMO as it’s a lifelong horrid condition.

It's true though that you don't need a GA for a cystoscopy if its a flexible one isn't it? I'm assuming they wouldn't do it with a local if it wasn't ok? My mum told my auntie who used to be a nurse and she said I needed a general- but she's 80, I'm sure they didn't even have flexible ones in her day- she probably thinks it's a rigid one. TBH I'm more scared of GA, never been put under and don't like the idea of it. But of course not looking fwd to being awake for this one either! There's no pleasing me

I'm hoping my issue is PFD which would make sense given my mild prolapse- and it's my bladder that is prolapsing into my vagina area. It's only mild but I guess some people get symptoms with mild, some people don't, and maybe it's getting worse. I have terrible lower back ache at the moment too. Maybe I should start doing my pf exercises again. I'm really hoping my issues will go away with some physio- as you said IC would be far worse than having any pelvic issues. I could even have an operation to fix my prolapse although right now I really don't want to go down that route....

For flexible they normally don’t give a Ga- I’m a wimp and requested it. I find being catheterised really painful. Also I have had about 15 GAs so not scared of them.
I have lower back pain especially at night and also night sweats.

Sunshine, from what you say I would think the high impact exercise is definitely a factor in this. I had a prolapsed bladder and had an operation to fix it. Any sort of exercise involving pressure on my stomach or pelvic floor gives me a twinging urethra within a few hours or it will come on that night. Walking is fine, running an absolutely no-no, any sort of sit ups or lunges, weight lifting, step aerobics all a no-no.
To test this, do not do any exercise for a two weeks and see if that improves things. You might be very surprised.

sadie9 actually I haven't done any exercise for 2 weeks (since seeing the urologist) and my back ache has got worse?

I don't do any high impact stuff at all. I tried running earlier in the year and it didn't feel right- a dragging bulging feeling - the doc checked and said my prolapse hadn't got any worse but I didn't like the feeling. So then I went on to do low impact HIIT. which involves no jumping or both feet ever leaving the floor at the same time. I felt so much better for 2 months until the bladder pain/frequency started. I also avoid any sit ups as i have diastasis recti (where the stomach muscles are separated in the middle). I always thought lunges were ok?

chrisinthemorning I've never been catheterised so I have no idea how I'll find it! Now you've got me worried. What if it's unbearable?.....

I had urodynamics when I was younger and had to be catheterised then.
I also had a CS- they put the cath in while I was numb - spinal- but I hated it once the numbness wore off- really uncomfortable. They left it in until the day after he was born.
Lots of people have it under local, as I say I’m just a big wimp.

Forgot to update- cystoscopy wasn't that bad! I was a blubbering wreck before hand but it was only mild discomfort really. He says my bladder looks a bit red and inflamed so IC is the diagnosis. I'm booked for 6 sessions of physio now to see if that'll help. After that the options are hydrodistension or instills. I've heard horror stories about hydrodistension so I'm not keen on that idea at all.

Glad it was ok sunshine but sorry it’s IC How are you feeling?
I’m doing OK- have renal ultrasound and follow up appointment with results of my urine broth culture next week.
Symptoms not too bad although still off caffeine. I have managed alcohol a couple of times with a pint of water for every glass and didn’t flare up.

Not too bad. I can't tell if I have bladder pain or if it's the muscles in the side of my hips. I'll find out more tomorrow when I have physio I suppose.
Frequency hasn't been too bad till today- a bit worse, which is weird as I haven't eaten/drank anything that should have triggered it.

I did try low acid coffee along with prelief pills a few times last week. It did seem to increase my frequency a bit though no pain, but I'm trying not to as I know it's not good for my bladder if it's already inflamed.

I also managed a glass of wine sunday night (took prelief and drank lots of water too) and no ill effects. I'm hoping to have a few drinks this weekend as I'm going away with friends. Fingers crossed i'm ok!

Keep me posted on your appointment/results!

How is everyone?
I saw my consultant and the broth culture showed E. coli and enterococcus. Going to start Hiprex and antibiotics. He still wants to do a cystoscopy though.
I had been doing well but having a bit of a flare just now- I go on holiday this weekend Started co amoxiclav so hopefully that will help.

I've been having a flare up for about a week now. I feel really miserable, but I am seeing the gynaecologist on Friday so praying that they can help.

Has anyone got any tips for managing a flare up?

Do you have Azo? I drink loads of water, D mannose, Azo if really bad and take sedating antihistamines to hell sleep.

@Chrisinthemorning I've not heard of Azo before. I will look it up - thank you

I had 'IC' for 12 years with severe pain, frequency, and urgency, and peeing up to eight times a night. I went to see the consultant who wrote the paper linked to above. I've been on antibiotics for a year and my symptoms have pretty much disappeared. It's turned my life around.

Oh that's good. Are you pain free now? I have been in agony for 11 weeks now. Not even one minute pain free. No painkillers help. I haven't been out and I have a new baby.

Hi, how long did you have to take the Atarax for? Was it the treatment that cured your IC? When you stopped taking it, did you not get the problem back? It makes me think it gives temporary relief rather than a treatment/cure. I am struggling, has been 6 months, constant pain, just asked the gp to prescribe Atarax and wondering about it. Thanks.

Hello, did your IC resolve, if so, how, which treatment worked? How long did you suffer from it? It has been 6 months for me with constant pain and frequency etc.
Thanks.

Hiprex has been the best thing for me. Still on it and no longer suffer.