Non-bacterial cysitis/urethral syndrome

[Pookythebear]

I'm wondering if anyone has any advice, thoughts or a similar experience...

About 5 years ago I had a lower uti that was treated with antibiotics, standard symptoms for me of burning and stingy wee with occasional slight spotting on wiping. Although the symptoms lessened after treatment it didn't fully go, so after numerous return trips to GP it was decided that I just was left with some residual irritation and it would probably go in its own time. It didn't fully go although the symptoms were totally manageable in the sense of just when I'd had a spicy meal or dehydrated it would come back. After a return trip to my GP who took bloods and examined me (all normal) they said they could send me for further tests to a urologist but felt given my age (30s) and that a bona fide infection caused it in the first place they gave a diagnosis of urethral syndrome and to self manage, which I was and am, I guess, happy with.

My question is that 5 years on and although much, much, much better I still, when stressed, eaten acidic or soft food or used perfumed products get the symptoms. Has anyone had anything similar and do you think it was unwise not to have gone for further tests at the time?

TIA

[SaliShoes]

sounds as if you may have got IC/ PBS- interstitial cystitis / painful bladder syndrome.
'Urethral syndrome' is a term they use when they don't really know what's up!

I've had IC/ PBS for over 30 years since an infection. I've had years when it was unbearable and hard to go out, years when it went into remission and overall I'm managing it with diet and occasional medication.

If you want to prevent it getting worse, do think about restricting your diet and what you drink ( avoid caffeine, alcohol, fizzy drinks and fruit juices.) There isn't much point having further tests because a) they are invasive and might make it worse and b) there is no one treatment that works for everyone- it's all hit and miss and you can try almost all of them via your GP.

There is a bladder website for this COB Foundation where you will find loads of info and a forum. PM me if you want to.

[nmg85]

I also have IC /PBS and it sounds similar symptoms wise. I have mine mostly under control thanks to finally finding the right treatment plan but mine is still triggered by certain foods (EG Spicy, sweeteners), stress, perfumed items. Most GP's won't prescribe the medication without seeing a urologist first and you can't get instillations at a GP as far as I am aware. If you are able to control by avoiding all the things that trigger then I wouldn't go for more tests but if you end up being unable to control then I would. If need advice then feel free to PM me.

[SaliShoes]

You ought to be able to get some medications such as amitriptyline (licensed for bladder pain etc) from your GP and possibly some of the other medicines. Instills, no. I only had 1 instill and it was such agony that I didn't go back for more. If you have a cooperate GP who you can 'educate' perhaps by showing them research papers and meds used for IC they can prescribe almost all of it. It's a very specialist area and even consultants unless they have an interest are in the dark.

[nmg85]

I agree with SailShoes you need to find the right GP, Most don't get why amitriptyline is prescribed or know anything about the condition. I struggled with one type of instillation but the ones I am on now give me the best relief I have had since diagnosis. My medication (Betmiga) I have to have a consultants letter otherwise they try and change to something less effective or have no idea it exists as fairly new.

[Pookythebear]

I can't thank you both enough for your insight on this. i am going to make an appointment with my relatively sympathetic GP and see if I can push this forward some more (without invasive procedures, where possible) and I will try altering my diet as the triggers are so bloody obvious, really.

[Forgetmenotblue]

I've had constant infections for years, some bacterial, some not. Bleeding and pain. Now on low dose antibiotics everyday to keep it at bay. It's been wonderful, much better. Still have to manage it though...drink a lot, no jeans or tights or anything at all tight or hot-making. Careful sex and a pee afterwards. Go easy on caffeine and alcohol. No fruit juice ever.

[dippingmytoeinagain]

I've suffered similar - history of UTIs and a couple of really stubborn ones. Last one lasted about 8 weeks - symptoms reduced and came under control but never fully shifted despite several courses of different antibiotics. Blood tests done and all clear and the GP referred me for a renal scan which was all clear too and the symptoms finally shifted after a 7 day course of ABs, rather than the 3 days they'd been giving me. I've been really nervous about my bladder health since - I take cranberry tablets twice daily, have cut down massively on coffee (maybe only one cup a week now, if that), no fruit juice and I've also cut out citrus fruit too, having realised that my bladder was feeling really sensitive and linking it to eating a couple of satsumas everyday. I make sure I stay hydrated, am very careful about hygiene and at the first signs of any symptoms at all, get drinking lots more water.
I hope you get sorted, it's horrible having those niggling feelings and wondering 'will it or won't it?'

[KuschligeMama]

You may have an unidentified fungal infection in your gut causing this. Nystatin may be the answer.