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

Wow that was very helpful info from Jenny Rohn and how kind to reply on Boxing Day. I didn’t realise Prof M-L wasn’t actually working in person at the Whittington now, but I guess if the clinic is following his testing and treating guidelines that’s good. His son was in the consultation back in Oct and seemed a nice guy too. But the referral from a consultant involves extra time at best and refusal at worst. I am struggling to pay to go privately but felt I just had to as had reached the end of the line after 5 years of it getting steadily worse under the NHS. I would rather go without any luxuries for as long as it takes to get this under control. So far my GP have been happy to issue monthly antibiotic and hiprex supply on an NHS prescription which is a relief.

Both really interesting and informative articles Widget thanks for the link. So depressing reading the comments underneath too from (mainly) women who’ve been or are still not being properly diagnosed. It’s grim how many of us have or are suffering and that in the main the only way to get it sorted is to go privately.

Lovely if rather helpless response from the doctor there. It is a disgrace that so little attention seems to be paid to this condition that blights lives.

You are doing so well OP pushing and researching and not being fobbed off to suffer. And all while you're feeling shit. Stay strong you have (unfortunately) many fellow travellers

Am just so pissed off!!!! Laying in bed with chest infection so can’t breath and my cystitis has for some unknown reason decided to totally and utterly go beserk! Great day today, hardly any pain... within 2 hours I’m back to square one... sore achey bladder and burning urethra... feels like full blown day 1 uti... am at my wits end with all of this I just want to feel well!!!! I actually want to chuck my bladder across the room right now!!!!

4 months ago I had a normal urinary system that just functioned like a normal urinary system. Now it’s just all gone to shit! I’ve got some weird shadow floating in my kidney my bladder is bleeding and can’t hold an ounce of wee without freaking out and if I do much as look at a tomato my urethra has a fucking meltdown!!! What is happening to my urinary tract..??? How can only ONE doctor on this entire planet of 7 billion people give a shit when there are this many of us . I’m SO losing it right now! I need a wee but then I wee and it burns even more so I don’t want to wee but then my bladder hurts so much so I have to wee and now I just want to curl up in a ball next to the toilet so it’s not so far away for my next wee which will probably be in the next 38 seconds oh my GOD!!!!! I HATE THIS!!!!

widget I totally feel and understand your utter despair. It’s bad enough on its own but with another infection in your chest it must be a nightmare. I agree you are doing so well not to accept what you’ve been told and to question things . Hopefully the scan will give you answers re the shadow, the chest infection will clear and you can make headway one way or another with the bladder. By researching and challenging existing ways of dealing with it you will be out of your misery much quicker than others of us (like me) who have gone along with the status quo. Try hard to stay hopeful. You will get there I’m sure.

I have IC and anytime I get any kind of illness or infection my bladder goes mental it's very common unfortunately

Complete meltdown last night, unfortunately there’s no delete button... I’m hurting again now and can’t sleep but trying to be positive again. It’s horrid because I open my eyes and my bladder is sore like I’m holding the worlds biggest wee, then once I’ve been it aches but then my urethra burns so badly I can’t get back to sleep, is that similar to toehrs?

I suppose it’s just getting used to something new, I know I’ll get there, it’s just a strange/unexpected one to take on board, but then I suppose all changes are. For those of you who have had this for such a long time... I can’t comprehend how hard it must’ve been, it’s so unfair that are still offering and insisting on all of these treatments and methods on the nhs which are doing little to help if not making things worse for many of you.

Nmg is there any reason for it to flare up with illness do you know? How are you coping with yours is it constant or do you have flares? Xx

Take some Azo, get a hot water bottle and hoping it passes soon. It really is misery. There are a few doctors who care, Mr Ali is lovely as well as Prof and his team. Are you on antibiotics just now, it sounds as though you need to be.

I’m on amoxicillin for a chest infection but I’ve done a week of amox for this a couple of months ago and it didn’t help it so not sure if that counts. I don’t really understand if this is IC if it can suddenly get this bad then go down again or if this is another infection I can’t get my head around how this works.

I’m sorry Widge. Do you think it might be worth a visit to A&E? I don’t say that lightly but if you’re in that much pain?

I’ve been reading up on the NICE guidelines on UTIs ( and other things) and it would seem, if I’m reading and understanding them correctly, that prof M-L take on things is not that far off what is supposed to happen.

I am planning on printing off the guidelines next time I have a GP apt. I know they’re just guidelines and I know the GP is the professional BUT the guidelines say to give antibiotics to treat the symptoms. They also say it’s not worth sending urine samples off to grow a culture. Also that GPS should not tell their patients to drink cranberry bloody juice.

widget so sorry it’s flared up so badly. From what I can make out from what Prof M-L said, generally patients report one initial infection and then go on to get further ones every few weeks or months. Only it’s not new infection, it’s the initial one rearing it’s head up again after being temporarily calmed but not cured, by a short course if antibiotics. Patients might then end up in a cycle of short course of medication followed by a period of calm and then a flare up, more antibiotics etc etc. That’s certainly what I had for 5 sodding years. Generally I only could get antibiotics by either begging or making out a case for them being the only thIng to bring a bit of relief but it was getting harder and harder to convince them prescribe anything when every lab test came back negative.

After 3 months relief on double dose Cefalexin I’m having a flare up and have been advised this is very normal and to double the double dose till it calms down again! So this = 4g per day whIch is a huge amount. Was told no recovery runs totally smoothly when it’s such a deep seated infection but that over time the length between flares should lengthen and the severity also lessen.

My advice would be that if it’s not settling and you can afford it to make an appointment with Prof M-L or Dr Ali . You can always cancel if it clears up but I had 3 months wait to see Prof M-L privately! That is an indictment as to how many people are in this situation and who have reached the end of the line with what’s available under the NHS. And I agree FobDodd why are we still being told to drink sodding cranberry juice when it’s been proven to be ineffective. And drinking loads of liquid can’t flush an infection out and just serves to dilute the effect of the antibiotics.

Also the sooner you get a proper diagnosis and treatment the less amount of treatment you should need. Mine has been getting worse over 5 years and that’s by no means exceptional in Prof M-Ls experience and it’s going to take a lot longer to clear it then an infection that has only been present for months.

If you are in loads of pain I agree with going to A&E. It’s such a wretched situation and I really sympathise.

Any change? I was up in the middle of the night and checking to see how you were doing Widge .

Op so sorry you are struggling with this, while I never had a diagnosis of IC, I’ve struggled with recurrent UTIs since around the age of 18, ( now 37!) with episodes every couple of months requiring courses of antibiotics etc and seriously impacting on my quality of life, confidence in being intimate with my OH incase it kicks off a bout of Cystits, in recent years the only thing to shift them has been horrid antibiotics with all the side effects, I was so so fed up- that is until late last year when I started taking D-mannose. It has had a hugely positive impact and I haven’t required any antibiotics in months, I haven’t had a attack of cystits in all the time. I know you mentioned you’d ordered some in your first post- there have been a number of proper clinical trials done with very promising results. I really hope that you find a solution and some comfort soon.

What side of D-Mannose do you take Lurkin, and where do you get it from? I’m going to give it a try.

I get mine on eBay from a seller called 5greens, I buy the 1000mg capsules. It’s the cheapest I’ve found online and I’ve been a repeat customer for months now. There are other sellers online so feel free to shop around, I like capsules over loose powder and the quality is very good. There’s no set dose as far as I’m aware but most days I try and take 2-3 capsules in the morning and usually 2 capsules in the eve if I remember 😊. If I feel a bout of cystitis might be threatening i’ll Take a few more and up my water intake, that’s been enough to sort me out, no antibiotics, no horrid attacks, no staying home from work. It’s really had a huge impact, hope it helps you too xx

Thanks so much Lurkin, so helpful. I had no idea I’d have to take so much. Still, cheaper than a private dr apt so will give it a go.

Well to be fair, I read the packet and it recommends 1-2 capsules daily. I take extra but that’s my choice 😊 good luck!

Have you signed up to the forum for bladder support? Used to be called COB.
Lots of info there .

Also- have you tried the IC diet?

It's listed online.

I've had IC for over 30 years.
The only thing that controls it is what I eat and drink.

If you have not tried this, do!

I know how awful it all is.

www.ichelp.org/living-with-ic/interstitial-cystitis-and-diet/foods-to-avoid/

bladderhealthuk.org/bladder-conditions/interstitial-cystitispainful-bladder-syndrome

I'm suffering from recurrent UTI's, I'm on my sixth course of antibiotics since October, I started taking D-mannose yesterday but woke in the night bursting to go to the loo, when I went it hurt like mad, I took some ibuprofen straight away & managed to go back to sleep, been to the doctors this afternoon & my sample tested positive for infection, protein & blood. I have been prescribed trimethoprim this time instead of Nitrofurantin or Co-amoxiclav. Once this infection is sorted my doctor is suggesting I go on a long term course of antibiotics to try & stop the infections happening. What have other posters done to try & avoid getting the infections? I already don't use soap down there, drink plenty, avoid spicy food & take high dose vitamin C, I started on D-mannose yesterday as well.

update

It’s been almost 2 weeks since my last post and there have been some developments. Firstly there was no tumour in my kidney it was a misdiagnosis, Private CT scan showed completely clear and normal urinary tract.

Straight after my last post I decided to totally and completely cut out orange juice and tomatoes from my diet... within 5 days my symptoms totally subsided and I now haven’t had any symptoms whatsoever for over a week, also I was checking my wee at home throughout this and I was having daily microscopic blood, this too has totally stopped along with the pain. 2 days ago I had a very small cup of orange juice out of curiosity and exactly 3.5 hours lately I started getting bladder pain followed by burning urethra.

I did have a cystoscopy booked in 6 weeks time, unless this re-flares I’m going to cancel that as I don’t want anything to be triggered.

This all started in September/October time for me, around the same time I started making myself home smoothies from a variety of fresh fruit veg and nuts etc with a base of orange juice. I’m 99% sure now that those smoothies triggered inflammation in my bladder and I’ve had to do an elimination diet to get my bladder back on track.

Vitamin c tablets aren’t affecting my bladder at all so I’ll continue taking these. I had a cider in the week and that didn’t trigger anything so for me it’s specifically tomatoes and oranges which I’ll now be avoiding.

It’s been 4 very painful and ultimately quite expensive months trying to get to the bottom of this, from evrything I’ve read now it’s clear that IC needs some serious attention in the medical world. In many it seems to be caused by an infection but in some, like me, it’s caused by an irritant, whether that’s your bubble bath or something we are eating and drinking. I wonder if I’ll have a flare up again, from what I’ve read that’s how this often works but I’ll just wait and see, at least for the time being I finally have a little control over what’s going on.

This threads got some amazing advice and links and I really hope it helps people who are looking for advice and help in the future, like I was x

Bar we’ve got different things as with this I never tested positive for an infection like you are. There are lots of people on this thread in your position though and long term antibiotics sounds like a common solution, a lot of people take just one tablet after triggers as well such as after sex etc just to nip andything in the bud before it starts.

Other things are regular d-Mannose, cranberry tablets (not juice), wee straight after sex, stop having baths altogether, drink lots of water etc.... all of the standard things! I would definately carry on with the d-mannose though, it’ll stop the bacteria from clinging to the bladder wall and I’ve heard can take some time to build up so keep going with it if you can. I’m really pleased your GP is taking this seriously though, low dose and stand by antibiotics are a great idea. I really hope you get some relief from this soon xx

That’s was supposed to say NAT not bar 🙄🙄

Hurrah it’s back!! Started twinging yesterday and now back with a vengeance...! I had a glorious pain free couple of weeks but now it’s back to the drawing board. There are two things which have been niggling on my mind other than a diet change.... in the 2 weeks before it’s dissapeared I was on fluxocillin for a chest infection and also my steroid inhaler which I use when my chest gets bad... the latter I think only affects the lungs but perhaps some of the steroid gets into the bladder I don’t know BUT the antibiotic... I’ve got a horrible feeling this was the golden ticket and stopped my infection but I just didn’t have a long enough course and it’s flared up again now. I do know that no GP will prescribe me long course antibiotics it’s hard enough getting them for a proven infection these days let alone this... I’m going to have a think. I’m still paying off the CT scan so can’t really afford to book Mr Malone right now.

Have any of you had any luck being prescribed long term antibiotics through an NHS consultant or will they just want to do all the stretches etc ?? I just need those drugs.... !