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??

*OP If you really want to crack this, you have to stop the coffee (and tea.) It's a small price to pay. I've not drunk coffee for almost 30 years.

Also, the FODMAP diet is for 8 weeks only then you add in one food at a time and may well find you can tolerate certain foods.

The IC diet is basically fresh food like fish, meat, eggs, some fruit and most veg. Cut out the citrus fruits, tomatoes and other bitter fruit and veg.

I've had to adapt my diet a lot and have got used to not eating spag bol, chilli, curries etc. Maybe make the family other foods too or make yourself something simple one or two days a week when they eat foods you can't have?

If you make a huge effort for 6 weeks or so you might get a lot better.

Hi - I'm not sure it's an NHS leaflet, my Urologist who was a private consultant gave it me. It is restrictive and a pain in the a**! However you do get used to it and manage it better as time goes on. It's also good not being in pain all the time. I get pressure/slight aching in my stomach and frequency on occasion rather than pain and can get on with my life.

I love coffee! And alcohol! I did cut it out which was hard/awful, but you do get used to it. I can also have a decaf coffee every week or so which is good. I still go for coffee with friends, but have cake and hot water instead. To be fair, before all this started I drunk far too much of the stuff. That's one thing I actually feel better for cutting out. Healthy eating less so. I've still not really drunk alcohol, but I'm going to try that soon.

Just checking in to say I have had the long term antibiotic treatment. I had what felt like repeated bouts of acute cystitis. Became increasingly frequent until I was in constant agony, it was horrific. No bacteria in my urine. The diet didn’t work for me but I’m vegetarian which made it very hard. After 3 months of agony, I saw a gynaecologist who prescribed a month long course of metronidazole and ciprofloxacin (the big guns!) and then went onto a long term course of nitrofurantoin then cefalexin and some steroid cream. Took 4 years but the symptoms gradually reduced. Now have antibiotics to take as a prophylactic or if symptoms flare up. I still have to avoid certain triggers (trousers, hormonal contraceptives, too much tea) but am mostly pain free. Antibiotics are the only thing that work for me, but as pp said, it may be that several conditions fall under the IC umbrella. It’s just worth knowing what treatments are out there as you may need to try a couple of things.
Good luck, you have my sympathies. It’s such a nightmare to suffer without really being able to tell people about it

I just wanted to share my story. I wish I could have found one like it 8 years ago...

I have IC. The Consultant said it was the worst he had ever seen and my bladder was heavily ulcerated.

I spent a year in bed. I went to work, but in excruciating pain. I slept all evening and all through weekends because I was in so much pain and it was my only escape. Changing my diet made me miserable and didn’t help.

I was eventually prescribed amitriptyline, solifenicin and cimetidene. Slowly, things improved. After about a year, I came off them to have children. I haven’t gone back on them since.

I live a pain free life and apart from a bit of urgency and frequency after alcohol, things are really, really good.

Aside from 2 blips lasting a few days each (one in early pregnancy and one when I had a coil fitted- and then promptly removed) I am pretty normal.

Please do not think, like I did, that IC is always a life sentence. Mine was obviously hormone triggered and not using hormonal birth control has been the real solution, I think. The doctors won’t accept that though!

I’m the same with hormonal birth control, Melvin. My symptoms also completely resolved during pregnancy and breast feeding, which I’m sure was due to the hormonal changes in my body.

That’s so interesting Bolshy. I hadn’t read your post before I posted mine, but was just telling my DH about it. Nobody medical has been willing to acknowledge it as a possibility!

Pregnancy definitely helped me too. Breastfeeding didn’t, so I had to stop at 3 weeks with DD1 and couldn’t get beyond a day with DD2 before getting too anxious about it Definitely evidence of hormonal influence though, even if in the opposite direction.

Oh and I’m also veggie

I ended up at urology in my early 20s because I had loads of UTIs and 6 months of low dose trimethoprim put me into remission so I am quite happy to try that before any dietary changes. I am reducing caffeine and alcohol but not cutting out completely at the moment.
Anyone had the cystoscopy- how painful is it? I had urodynamics in my early 20s and have been catheterised since for gynae stuff and I find it very painful. AIBU to request sedation?

I had a cystoscopy, but privately under general anaesthetic. They didn’t consider any other option.

I would definitely ask what can be offered.

I have Bupa so being seen privately. Will definitely push for IV sedation at least!

Melvin In the US they tend to diagnose without a cystoscopy and over here they are pushing for this. I refused this procedure and my dr was happy to offer treatment without it. I've had symptoms for 35 years since a bad UTI which was either treated too late or with the wrong ABs or even too many ABs ( 3 lots in a few weeks.) I was left with issues that carried on for decades. I admit I felt suicidal at times as it restricted my life so much.

What helped was Atarax (hydroxyzine) which is an antihistamine and supposedly controls mast cells in the bladder which cause the pain. I went onto the 'IC diet' - loads of info online on this- for decades.

Now, they are happy to prescribe Amitriptyline without a cystosc. - that's been the case for about 15 years. It helps some people.

The long term use of ABs for a low lying chronic infection has been debated for years and years. I think it's different for everyone.

My IC was better when I was pregnant and improved in menopause when I went onto HRT.

There are risks with invasive tests- they can make things worse for a while and a rigid scope, under a GA, is pretty brutal for some people but not everyone.

OP Everything you need to know is on this site and there is a forum too.

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

Ah, I didn’t know that Sandy. Sounds like it’s still being offered in some cases though.

Mine was in 2011 I think. It was for 3 purposes: taking a biopsy to check for cancer (OP implies this may now be via bloods), seeing whether there were any ulcers (as this was going to impact on my Consultant’s advice) and finally cystodistention. Quite honestly, I am very glad I had mine.

Sorry, it also might not have been clear that my cystoscopy post was in response to chrisinthemorning. I meant see what can be offered in terms of pain relief/avoidance for that procedure.

I refused them around 10-15 years ago. I'd had symptoms for so long that TBH had it been cancer, it would have been obvious by then. My symptoms were so closely linked to my cycle ( worse after ovulation each month) food, drink etc.

I'd read so many posts on the bladder forums of women who were in agony for weeks afterwards ( and some felt better- mixed reports) that I felt 'no way'. They have to fill the bladder with fluid to stretch it and for some women this stretching causes bleeding and it takes a while to repair itself.

I'm pleased you got on ok.

There are 2 sorts of cystoscopies- one under a GA which is really the only one to diagnoses IC as they have to fill the bladder and stretch it to look at the walls. The other sort which can be done as an out patient is much easier with a much thinner scope and is just looking for cancer etc.

I was offered cystodistention (the fluid stretching) as an option with my cystoscopy. I’m not sure I would repeat that bit to be honest, but it wasn’t a must for my cystoscopy.

I’ve found IC advice and treatment options to be so varied from Consultant to Consultant, it’s impossible to give any solid advice or to say what anyone will even be given the choice to try! I can only share my own experience.

Mine was flexible, definitely. Could have been done as an outpatient, but my Consultant preferred to do it under GA. I count myself lucky!

This is very helpful, thank you.
I don’t know for definite but am guessing they will want to do a cystoscopy due to the haematuria- this is mainly why I have been referred. I have had 2 UTIs recently though. I’m ok now but the area seems a bit sensitive so drinking loads of water, only having 2 cups of normal tea a day (rest decaf) and avoiding alcohol really although I did have a glass of prosecco and one of wine on Saturday- I alternated with a pint of water and was fine.
Taking d mannose as well.
I want a flexible one but under sedation or ga! I hope I’ve picked a good consultant.
Anyone tried methenamine hippurate (Hiprex)?

thanks CuppaTeaAndAJammieDodger but no I don't have a coil fitted

trickyex I've just turned 41. I guess it could be but are issues like this something that happens in the menopause? Only other potential menopausal symptoms I've had are night sweats every now and then, otherwise I feel ok.

Chrisinthemorning when is your appointment then? Are you definitely having a cystoscopy? I've managed to get an appointment for tomorrow afternoon (instead of a months time) and luckily have been able to get childcare sorted at short notice. And weirdly my symptoms have dramatically reduced! No urgency and only a very slight dull pain in my bladder area! I'm amazed. I am just so happy to feel relatively normal, its amazing how pain/discomfort affects your mood. I'm worried about the cystoscopy if I need one. When I went to see a physio a few years ago they wanted to check my bladder output and were talking about putting something up my urethra and I turned into a shaking crying mess, it terrifies me. I've only once had my urethra touched when I was swabbed for an STI test when I was in my twenties and i hit the roof when she did it, the pain (with a healthy non sore urethra) from the swabbing was off the scale. Luckily it only lasted a second.

Also, I haven't done my HIIT workout for 3 days, I'm wondering if it's linked? Does jarring/high intensity exercise set off a flare? I do a lot of repetitive knees up stuff etc, but nothing high impact (no jumping) due to my prolapse. I'll be gutted if it's a trigger as I've finally been getting fitter and feel so strong and healthy for it.

I'm also scared to try tea/coffee to see if it can cope after calming down. I only have 1 coffee a day in the morning at the moment and seem to be handling it ok. I had a G&T on Friday night and it didn't make it worse. I don't drink much anyway apart from the occasional night out.

Those of you who were on long term antibiotics, how did it affect your gut? I have IBS so mine is VERY sensitive, like I said, its all screwed up after just 1 week of antibiotics.

SandyShorreseMissingShoes I know the fodmap diet is only supposed to be a 6-8 weeks but as I said I'm waiting to be seen by a dietician. I guess I could try and reintroduce myself but it's hard enough doing elimination diets with help let alone without (as I've discovered in the past) and with the fodmap you have to make sure you only introduce one sugar/fodmap at a time and first in a small amount then a larger one etc, and I guess trying to do all that whilst often single handedly looking after 3 kids is so daunting for me

sunshine05 that’s great your appt is now tomorrow. Hope you get on Ok- keep us updated. Good that you’re feeling better too.
Not definitely having a cystoscopy- I won’t know until next Tues when I see him. I’m expecting it though, because I think we need to rule out a sinister reason for haematuria. Weirdly I had 2 urine dips with the blood before all the symptoms started as part of a routine health check. They gave me a weeks worth of Nitrofurantoin and I’ve had 2 symptomatic UTIs since then.

I had mild IBS when I was on daily antibiotics for a long period (several years), but it was tolerable and worth it for the pain reduction. My gut is generally fairly sturdy though. It probably also depends on which antibiotics you’re on and how they affect your gut flora.

Just wanted to reassure all those who are worried about having a flexible cystoscopy. It really isn't that bad! You won't need a GA or sedation of any kind. I was really nervous and anxious about having one, I'm a complete wuss but honestly it's really nothing to worry about. Its no more uncomfortable or embarrassing than a smear.

I didn't have any anaesthetic and it only stung slightly as the camera was put into my urethra but as soon as it was in my bladder I couldn't feel anything. It's over in a few minutes.