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??

I’m not seeing Prof but Mr Ali
www.chronicutiinfo.com/intro-key-info/treatment-uk-specialists/

Yes, he does a lot of my appts overvthe phone. Saw him in jan and that was the first time face to face in about 18 months.

Does anyone else have a problem with trousers and leggings? I can’t wear them at all apart from running tights but only when I’m out and about and there’s a breeze going through my gusset
Even legging bring on my cystitis symptoms and although antibiotics will calm this down, the prophylactic dose I’m on won’t prevent it. Im not sure why they cause such an immediate reaction, the only thing I can think is that they make my urethra a bit warmer?! So annoying though, I long to wear trousers again. I’m thinking I have a lingering infection and although the prophylactic antibiotics keep it under control most of the time, they haven’t entirely cleared it. Or that I have very delicate skin in that area that’s prone to infection. I just don’t know!

Sorry to hijack the thread but I have a UTI question and you are all in the know.
I had thrush i treated with canestan but it didnt work so retreated. At the same time my uretra was irritated so I thought it was thrush and it might be a fungal uti. My dr did a urine test and lab came back 6 days later. The receptionist rang to say there was a prescription for me but couldnt tell me was was growing from the sample. The prescription is antibiotics! I dont have an symptoms atm so I dont know whether to take them especially as Im prone to thrush. I do have back ache so worrying about kidney infection but no other symptoms. I did a urine test which was negative for everything apart from blood but I’m on my period so that could be contamination.

What should I do?

Bolshybookworm yes I really struggled yesterday with my skinny jeans. Problem is I live in them. And I’m on holiday and have only 1 dress which is so much more comfy. Really struggling with the no caffeine. I feel like a zombie, it’s horrible. And Imnot sleeping well as were staying with family on an air bed. Fml.

I’ve tried no caffeine the past 2 days sunshine
Yesterday I had a splitting headache all day and needed an afternoon nap.
Today no headache but still needed the nap.
Aiming for no nap by Monday.
Caffeine withdrawal doesn’t last that long I don’t think.
Hating not drinking alcohol though, really fed up without Saturday wine.
Fortunately/ unfortunately it is working as my bladder does feel much more comfortable. I am eating loads like chocolate and a curry last night so will get fatter but the good news is diet doesn’t make any difference to me.
Trousers/ jeans ok but tights wouldn’t be good all day although ok for an evening.

Also if you are still having pain and symptoms no way should you be on a blow up
Go home tomorrow or check into a travel lodge.

Hi Sunshine I was recently diagnosed with IC, is horrible, isn't it?

I've been having weekly procedures where a gel called cystostat is put into my bladder through a catheter. The first few weeks I began to feel a bit better, but now I'm having another flare up and I'm climbing the walls. I'm drinking lemon barley by the pint and about to try baking soda.

I feel for you both sunshine and violet. I have so been there with flare ups on holidays, it’s awful. Especially as you have to pretend you’re having a good time when you just want to shut yourself away. Had a number of trips ruined by cystitis .

Yeah, I also struggle with tights, but as I can’t go bare legged all winter I now wear them with the crotch cut out. I live in fear of fainting or being knocked over and my weird underwear situation being revealed to the wider world. Big cotton knickers and crotch less tights . I tried to cope with hold ups for a couple of years- massive pain in the arse. Really restricted what I could do as they were always falling down.

What I wouldn’t do to wear jeans again.

I'm really glad I've found this thread, I've been suffering with irritable bladder symptoms for 6 years. I was fobbed off by my doctors for 6 years until last year when I was pregnant and suffering the worse flare up ever. Luckily I saw my midwife who took action.

I've now been for urodynamics testing, I'm waiting for the results.

What I find helps is cutting out all alcohol and caffeine. Apparently chocolate is a big no too.

Recently I've been prescribed versicare and a strong antihistamine which I take before I got to bed. This has reduced my nocturnal dashes to the toilet from 6 to 2/3 which is much more manageable. I know I need further treatment, I'm just playing the waiting game at the moment.

Bit intrigued by the cystistat, violet. Will you keep us posted on how well it works long term?

Hi Bolshy yes, I will do. Theres some info in this website about it - bladderhealthuk.org/bladder-conditions/interstitial-cystitispainful-bladder-syndrome/icpbs-treatments/intravesical-medications/cystistat

It's not much fun having to have it inserted weekly by catheter, but I'm at the point now where I'll try anything. This time it was more stingy than usual when it went in, so I'm wondering if the flare up is due to that. Who knows though? It's like a guessing game trying to work out what causes it.

Sock portal how are you getting in with the Vesicare? I had to stop taking it because of the side effects.

@VioletCharlotte it took a couple of weeks to start working, although I'm unsure wether it's the versicare or the antihistamine that's alleviating my symptoms. My doctor said there are alternatives to versicare as it doesn't suit everyone

Sockportal It's good news that something's working anyway! Must be such a relief

Similar problems here, waiting for urologist to do the camera thingy. Just wanted to ask if anyone has found that it improves during your period or not, because on those days i virtually feel normal again. Mine is not so much increased wee but feeling pain around the urethra and cramping pains internally. Nothing helps so far except Vaseline, every other cream I've tried aggravated it.

When I get a flare up I feel pain/ blockage feeling in the urethra. It makes me so miserable. I have an appointment in May to discuss the results of the urodynamics tests which were done in February. I feel this aspect of women's health is greatly ignored.

SinisterBumFacedCat (nice name mine definitely got worse during my period (which has nearly finished). Well I survived the holiday- it actually got much better the 2nd half when we stayed in a nice cottage and I managed to avoid coffee- I think that's when the pain lessened. I had a week of no pain and not much urgency then this week it's got worse again I had a full caff coffee one day with tons of water each side of it and was fine, the next day I drank a decaf tea -but admittedly was a bit dehydrated when I drank it and bam, flare up. So gutted. Back to pain and urgency. I've now managed to calm the pain down but still stuck with the horrid urgency. I feel like I can't go out as much, always wondering where the next toilet is.

I've stocked up on the following that are supposed to help: Serrapeptase, Aloe Vera capsules, Probiotics and Ester-c (Vitamin c but non-acidic form) I'm run down and worried about taking multi-vits because they can irritate the bladder. I've also ordered some Marshmallow root tea that can be very soothing on the bladder. Joined some FB groups and they have some very handy info/tips and of course just that feeling that you're not alone in all this. I'm really struggling psychologically, have good and bad moments, I feel no-one I've told really understands how devastated I feel and I'm scared that I have no idea if this will get much worse or whether it'll just go away and I'll be back to 'normal' again. Cystoscopy on Friday coming. Nervous but trying not to think about it. I'm thinking if I play it down then maybe it won't be such a big deal and even if it's painful hopefully it'll be quick??

Hi, yes, mine always got worse at ovulation and just before my period and really settled once I started my period.

I'd really like to urge all the people who are treating their symptoms by cutting out certain foods etc to consider going to see a specialist if at all possible. I tried all of those things (including Cystistat, Ialuril, marshmallow root tea) and although I could convince myself that they helped sometimes, they are not long term solutions.

Have my appt today with Mr A. Nervous!
I’ve been feeling ok recently as long as I don’t try and drink alcohol. Am ok off caffeine. Taking D mannose.
See what he says!

yes I agree Dacresmallwilly that people should see a specialist. I think its fine to try these natural remedies to reduce symptoms but I'm not using them in place of specialist help. I just needed to take some control whilst waiting for a month to see someone. And there are people who have gone into remission on diet and supplements alone so I think it's entirely possible. I think for some people this condition is an accumulation of toxins in the body/everything is overloaded/out of kilter and cutting out the crap- sugar/junk food etc is enough to restore some equilibrium. Today's modern diet is SO packed full of rubbish. We all need to go back to eating food in a more natural form with no added rubbish. But anyway, I'm all up for trying some modern medicine though instillations etc seem to have mixed effect, with some people not benefiting at all. I'm most looking fwd to physio as I think my issues are linked to my pelvic floor and prolapse so I'm hoping it'll help a lot.

Chrisinthemorning good luck today. Are you having your cystoscopy? Let me know how it goes

Just a consultation- I changed my appt to see Mr Ali rather than AN Other urologist because he has an interest in chronic UTI.
I think that’s what Dacre may be saying- that it’s a good idea to seek out a Chronic UTI specialist?
Let you know how it goes

I had a really miserable night last night, had to get up at least 6 times. I think I know what agitated my bladder though - raw onion, does anyone else get this?

theotherendofthesockportal I don't eat raw onion as it aggrevates my IBS so I couldn't tell you. At least you know for next time?

Have you heard of mannose D? Can be a life saver, give it a google.