Cystitis in agony hand hold ** interstitial??**

[Widget123]

Hi, I’m just in here for a vent, hand hold and reassurance that I’m not the only one whose going or gone through this.

2 months ago I was walking my dd to school when I felt a cold feeling in my bladder, by the time I got to the school I had to ask to use their loo. That was the beginning and it’s just got worse since... it started becoming more pain and tender ‘down fhere’, I started needed the loo more and more and it burnt when I went to the loo. I went to the docs and my wee tested normal but they put me on a week of trimethoprim, it did nothing, then they tried amoxicillin, this did nothing, cultures still clear. 2 days ago suddenly the pain went from becoming bearable to totally flooring me, I went to docs today and she’s found blood in my urine. She’s now put me on the antibiotic nitrofurontoin, booked me in for and ultrasound and sent off another culture. I’ve tried everything imaginable... I’ve drunk cystitis sachets and water like it’s goinf out of fashion, I’ve elimnated things from diet, totally cut out any drink other than water, I’ve even cut out tomatoes as I’ve her they are bad. Yesterday I had nothing but water some chicken and pasta and tonight I’m still doubled over in pain. It feels like a full blown infection but nothing’s coming up, the doctor thinks it may have become badly inflamed and has also given me Naproxen to ease the pain and inflammation. It’s christmas in 4 days and I’m so tearful, I’m supposed to be hosting for 10 people but right now I just want to curl up in a ball and cry I’m so sick of this it just won’t end... does anyone else have this? Please let me know I’m not alone. The pain is just unbearable

Hi widget, I'm not sure what that is but it sounds highly treatable. You sounds like you are getting progress at least.

I think so but the GP doesn’t think that’s related to my symptoms and my flow today was slow slow it was almost nonexistent. I’m not sleeping and have stopped eating. Until I have a CT scan they won’t be able to tell me for sure what it is.

The weird thing is is that I have eaten nothing but a banana in 48 hours and although the urgency and slow flow etc are all still there the stinging and bladder pain has almost completely subsided... I thought I noticed it a few weeks ago when I forgot to eat until quite late in the day but now I’m sure there’s some connection although I can’t work out what. I’ve been on a healthy diet and avoiding all the trigger foods so I can’t work out what it could be...

I just can’t get the word ‘tumour’ out of my head... I also know it’s virtually impossible to tell by ultrasound if somethings malignant or benign so I’m so scared. I’ve always suffered from anxiety anyway but had it under wraps lately, finally for the first time in my life, now this has snowballed me again.

Just think Widget - in a matter of days you'll have some proper answers. Stop panicking woman!! You do not have kidney cancer or whatever - and I can tell that without even knowing you

Eat a couple more bananas. The potassium could be helping

I don’t know you two ladies but you’ve been a bit of a rock for me through this. Thank you. I’m off to eat some more bananas! 🤗😘 x

I have health anxiety too which comes and goes so know exactly how you're feeling right now. I predict you'll feel a whole load better next week with some proper answers - at least mentally anyway. Once you know your death isn't imminent () I think it'll really help lift you up and mean you're more able to tackle the pain.

Doctors really do come out with some things which you wish they actually wouldn't do. For example, my dad was told he had 3 years left (still here a decade later), my mum was told 'now is the time to book that once in a lifetime holiday you've always dreamt of' (still here, 9 years later) and when my dad was on a short hospital stay the other year, a serious faced consultant sat down by his bed and silently told him about his bladder cancer diagnosis - as a nurse cane racing in saying 'wrong patient, wrong patient!!'

Oh my god that’s awful! It’s terrible isn’t it. They told my mum to write her will after her ovarian diagnosis, that was 20 years ago now. She was also wrongly diagnosed with a rare and highly aggressive skin cancer a few years ago which after a second biopsy turned out to be a simple localised bcc.

My health anxiety is terrible but I’m tying so hard to be positive. 53 hours to go

Xx

I have health anxiety too, it can be crippling at times can't it?

Once I was told by the consultant that I could stop digging my grave was when my symptoms started subsiding. Having said that I do think I just had one of these undetectable nasty infections that Didn't really respond to antibiotics. I have had one very minor episode since which did respond to antibiotics though.

Are you booked in for a cystoscopy too?

Anxiety is horrible.

I’m going to let the consultant take the lead and book the scans once I’ve seen him so I don’t jump the gun. Not sure if he’s going to recommend CT or MRI but I’m sure cystoscopy will be a definate one. Yes it’s the worst thing Anna xx

Saw the consultant last night and he said he thinks I have interstitial cystitis. I still have microscopic blood in my wee and still having the pain down there. He’s going to do a cystoscopy thought it rule out anything else. He’s also ordered a ct scan for the tumour in my kidney to see what it is, he’s 90% it’s benign but wants to be sure. Also doing urine cancer cultures I don’t know if anyone’s had that?

I felt good when I went to bed like things were moving but just woken up in the middle of the night terrified again. 10% is bigger than I thought...

Never had urine cancer cultures. I have heard of them doing that to check for cancer markers before doing a cystoscopy though. I'm not sure why, sounds like they are being extra thorough in your case.

I still had blood in my wee (and prob still have) the day I went for the cystoscopy but nothing out of the ordinary was found. He did give me a guided tour of the inside of my bladder though which I have to say was most interesting 😂.

I wouldn't worry too much about that, some people just do. If it's visible blood in the toilet bowl then it's much more concerning.

By the way, please don't worry about having a cystoscopy. I'm the biggest wuss going and didn't find it that bad. Wouldn't bother me having another.

widget thank you for these updates and keep posting, its as though you're out there pioneering what tests are around, on behalf of women with bladder issues. Cancer is so very unlikely to be the cause. Far far more likely interstitial cystitis which is no great diagnosis but better than the alternative.

You're doing great.

Thank you both, I’ve got my CT scan tomorrow with and without contrast so hopefully they can get a clear idea of what’s going on in my kidney. Cystoscopy should be on the 17th but just trying to get booked in.

I’m stinging like hell on earth down there today, theres a dull ache like I’m bruised down there or have been kicked between the legs... I had it a little while ago it comes and goes, anyone else had this sensation with IC? It sounds mad but I feel like I’m seeing a connection between eating tomatoes and the stinging!! Everytime I have tomatoes for dinner I wake up in the night burning and needing to wee urgently (not a lot comes out). If IC is my diagnosis I suppose it’s off to see Mr Malone on Harley Street. I’m guessing his belief is that all IC cases are infection related? I’m not sure how he works... going to be so broke after all of this but I’d rather sell a kidney right now than go through another month of this! (Not that anyone would want it 🤣)

Will report back with scan results once they come in xx thank you ladies 😘

Hi op,

I have IC.

The medication I have is amitriptalyine (sp) and oxybutin. The first stops the pain as it's a nerve blocker, and the second stops the frequency to pee constantly.

There is no cure (which I'm sure you know) so it's just about managing the symptoms. Since taking the 2 above, I have been able to successfully ween off of them and haven't suffered a flare in a fair while. I think trying to use my bladder constantly because the symptoms were pushing me to were causing more aggravation, and once it had time to "rest" it has improved significantly.

Just read further down on your updates, make sure they also do a bladder inflation and biopsy so you don't have to go through a cystoscopy multiple times to diagnose the IC.

I found recovery from it quite rough, a bit like the worse flares, and you really don't want to keep having those done!

If it reassures you, I've been checked throughly, and I still always have blood and protein in my urine to this day, sadly it's part of having IC.

Thanks brown moose that’s really kind of you. I have been on amitriptyline before but had to come off it because they found I had a heart block so I’m hoping they can pmfind something similar to put me on, I do remember how well I slept i it though, wow!

Yes I am having a bad day with the pain again today and the thought of having a tube shoved up it is concerning me quite a lot... did you have to go on antibiotics after? I don’t know right now if I could tell if I had a full blown infection or not tbh. I’ve heard there’s discomfort and bleeding after the procedure? I’ll ask him about the other bits to make sure it’s not done more than once.

How long do your flares last? Do you have anything in between or are you totally symptom free? I’m finding right now even on my almostvsymltom free days I still have a very slow flow but I’m hoping that’s just part of the IC and will go down with the flare, if it ever goes down. Does it always go down at some point?

I've had a cystoscopy 5 times now, each with a urethra dilation to widen it to reduce the discomfort.

The 5th procedure I also had a bladder inflation and biopsy, which is when they diagnosed the IC.

I've had issues since I was 7, so a good 30 years 😭 and was finally diagnosed 5 years ago now after years and years of Trimepothrim. Funnily, the only times I was symptom free and medication free was always a year after having had a baby, then it came back when vengeance each time. During pregnancy it SUCKED, less pain, huge frequency issues from very very early conception.

I'm relatively pain and discomfort free these days. I'm quite good at recognising a flare coming and will then start taking Amitrip (and getting good sleep too 😎)

If I went to the doctors tomorrow for example though and had my urine dipped, it would contain blood and protein. A culture would never grow (and never has)

Alcohol is a no go. I'm pretty much tee total because of it.

As it's auto immune, it's never going to get better, but it can be managed. The oxybutin I think helped stretch my bladder as I wasn't going so often and it was able to fill up more without me having any awareness.

I can now for example make a whole nights sleep without getting up, this is relatively new for me, and a welcome relief.

I believe it does deteriorate with age. I'm trying to be as kind to my bladder as I possibly can to reduce the ageing of it. My consultant said the worse case is you can end up with a bag 😔 and I'm hoping this is an incredibly long way off for me.

There is hope I promise! I used to spend a vast amount of my life governed by my bladder and waterworks. I am now pretty "normal" 😂😂

Sorry, I keep seeing things I've missed to reply to.

Thing is with IC, is you don't currently have an infection as such, your bladder is basically having a scrap with your body, and that's the pain you are experiencing. Your body is trying to fight off your bladder and it's associated pipe works. The symptoms are the effects of that battle.

After the op, they just gave me pain relief. It was a really shitty 24 hours I'm afraid, and you will pee a lot of visible blood. I would advise wearing a pad if you know your bladder is empty and just going with it, it will save your sanity.

Oh my god I didn’t know it could get so bag you could end up with a bag 😧 Jesus... now I’m bricking it... why did it take 5 cystoscopy’s to diagnose, surely they could see the inflammation from the first procedure??

I’m so confused... so many people have recommended prof Malone on Harley street... is this for interstitial cystitis? Is he saying it doesn’t really exist and is an embedded infection which needs treating with antibiotics or only in certain circumstances? I’m in a lot of pain right now and o don’t know what’s triggered today’s uproar but my bladder is definately not a happy place today...

No advice just huge sympathy. It's the most miserable experience. My heart goes out to you.

That's worse case scenario, so don't panic!!!!

I didn't go private, IC is readily recognised in the NHS, it's just finding the right consultant.

Why 5 times? Christ knows. I think they thought that it was all to do with my urethra and that was why I was having reoccurring "infections" as it's a common thing in women and IC isn't. When actually IC is vastly under diagnosed.

It's deffo IC, it's been confirmed, but it takes a bladder inflation and biopsy to confirm that. The picture of my bladder showed lots of scarring and also active bleeding or the bladder wall.

The only thing that eased my pain when I wasn't on proper medication, were those sachets you can get for cystitis from the supermarket and lots of paracetamol. I used to mix up 3 sachets and down them.

I’ve just read your whole thread. What an absolute nightmare, you poor thing. I hope the latest tests and docs bring some kind of insight and help for you.