Bladder problems

[pepperquip]

Hi. I'm hoping someone who has been there might be able to offer some advice or tips please.
I had a UTI at the end of June which was showing in tests as clear after 3 days. I was still suffering from the urgency symptoms so had 3 different courses of anti biotics. Nearly a month on I am still struggling with wanting to go to the toilet all the time and it's really getting me down.
I have tried eliminating trigger foods from my diet. I have tried drinking only water around the clock. I have tried oxybutynin. I am currently waiting for a hospital appointment for a scan.
My only symptom is urgency to pee - no pain, discomfort etc.
Has anyone else suffered with this after a UTI and if so can you offer any tips. I've had UTIs before that have cleared within 1 to 2 weeks but never anything like this. Any help gratefully received. Thanks

How often are you going to pee?

More than 8 times in the day, or more than once at night is abnormal.

Have they given you a bladder diary to fill out?

Are you being incontinent, or do you have enough time to get there?

Might be worth asking for a referral to a women's health physio (that's what I am) and getting another test incase the infection is still hiding up your kidney somewhere.

Let me know how you get on.

Thanks for replying. Up until yesterday I was managing to hold out for between 1/2 hour to an hour but feeling the need to go after 10 minutes. I have had around a month of this pattern with multiple get ups in the night. I'm waiting to hear from hospital for a bladder scan but the doctor seems to this I have an irritable bladder. Fortunately I haven't had any leakages.
I was prescribed oxybutynin at the end of last week and have been taking those, which have helped enormously - but have the unfortunate side effect of making you want to go to sleep!
I was hoping that now I've managed a day or so of going that bit longer without dashing to the toilet I'll be able to come off the tablets soon. I'm trying to be optimistic!
Have you found that the physio helps? Are you suffering from irritable bladder too?

I have overactive (irritable) bladder. I was going every 20 minutes and it sent me round the bend, literally. I was so anxious that I would be that way forever. I'm not :) I saw a urologist privately (about £200) he was also the local NHS guy and referred me back to NHS for tests, cystoscopy and urodynamics. I took detrusitol for 6 months which worked ( only side effect I can remember was dry mouth) i stopped taking it as TTC but it didn't come back for 5 years. Now I just get it occasionally when really stressed. I knw what it is so don't worry about it and it goes away. Worrying for me made it much much worse it was a vicious circle.

Caffeine is a big trigger so cut that out if you can. I know it's horrible but try not to worry it can be sorted and ask about a different drug if the side effects are bad. I really feel for you OP i hope it gets better soon x

And the water drinking. If you don't have a UTI then no need to be flushing out, the more you drink the more you wee. Ensure you have sufficient to remain hydrated but don't over drink particularly in the evening x

Thank you so much for taking the time to reply greeneyed. The phrase 'round the bend' I can relate to at the moment.
I've just been back to the doctor (again) and he has taken me off amitriptyline and oxybutynin but given me something to help to get a bit of sleep for a few nights. I'm waiting for a bladder scan referral to come through. Seeing a private urologist sounds like a really good idea - did you just google? Or go to BUPA? I've no idea where to start.
Many thanks for your reply x

I was fobbed off for years seeing an NHS consultant (i never actually saw him just a junior in the dept) for a five minute appointment and really wanted someone to spend some time with me. I saw one of the NHS consultants privately at Nuffield. He spent a long time going through my history then said I needed to tests and could have them on the NHS and referred me for them. I then had to wait about three months for the tests I think but didn't have to pay for them. Google the Urologists at your local hospital and see if they practice privately (you can usually find out what they apecialise in) then contact their secretary for an appointment. You'll probably get seen within a week and will need a referral letter from your GP. When is your scan? What sort of scan is it? If it's not long might be worth waiting for this to discuss findings?

Also keep a bladder diary, fluid in, fluid out to show to the consultant. It's a bit of an arse going to the loo with a measuring jug but i think they can tell a lot from it. Google it you'll probably find one online to conplete.

Thanks greeneyed. That's really valuable advice.
I've just been back to the docs to ask about a referral letter but the receptionist seemed to think my scan appointment might be next week, possibly the week after. I think the doctor ordered a bladder scan an lower regions scan. He is a very thorough doctor but I don't always manage to see him. The other doctors have been very supportive too but there isn't that continuity when you're seeing someone different each time you go in. I think I'll hang back from paying to see a consultant until the scan is back - good advice.
Many thanks. I really appreciate you taking the time to help. And I'm glad your bladder issues cleared up and got sorted out

Thank you. Sounds like a good plan. I hope you get some relief soon!

hi I can sympathise I will try and PM you as suffered also.

Please see if the foods you have been consuming are high in potassium. There's a condition named interstitial cystitis which can be mistaken for irritable bladder.
The bladder specialists are not always aware of this and the worst thing is to be told to hold it in. After doing a juicing fast a number of years ago my bladder went crazy and the pain was unbearable. After scopes, diaries, retraining and pelvic scans etc they decided I had irritable bladder. Then it was decided I had a 'urethral diverticulum', after much searching on my own and avoiding cranberry juice I realised I'd overdone the potassium foods and this triggered problems. xx best of luck

Ps my issue was urgency to pee also, one thing that alleviated my bladder pain was taking an antacid. I too had been given vesicare etc

Thanks you Indigo Barbie. That is interesting as at the beginning of this last infection I was taking potassium citrate and cranberry. will tryas you suggest - many thanks.
Cake - thanks. I would b really grateful of any further advice x

Thanks for your help everyone.
I went to see the uro chap privately and he asked lots of questions and did an examination. He prescribed vesicare to see how I got on with it. I'm now on the waiting list for the camera.
I'm finding it a little easier in the daytime as when I'm busy I'm not noticing the urgency symptoms so much. Night times are still difficult though. I was up at least a dozen times last night.
Hoping things will get sorted soon.

Thanks for updating pepper Glad you are making progress. Good luck!

Meant to say-if you pee into a jug and can visibly see floating 'skin' type pieces, this might indicate a condition closer to interstitial cystitis rather than irritable bladder. Good luck xx

You have read my mind Indigo! As I've been measuring these last few days I've noticed a lot of little bit or flecks of what look like skin. I was so hoping it wasn't interstitial cystitis. It's such a terrible illness.

Pepper, try not to worry too much. Lots of water and pee when you feel the urge to (this can provide relief) which is contrary to medical advice. I found that I was having flare-ups due to the excessive consumption of high potassium fruits and vegetables whilst on a juicing kick. This was in 2008, and after understanding this, I avoided high potassium foods and drinks and I manage it now OK. I think at the time though I damaged my urethra muscles by overusing them trying to pee all the time as this is what by body made me feel like-the unbearable urgency with burning bladder and pelvic pain. It's just a bit of a learning curve to work with your body and not against it. The body never lies. Best of luck and if you feel this is what you might have, try and be patient and look to your foods etc, whilst in a flare up it can take a while for the bladder to calm down. One thing that hospitals want to do is to put a potassium wash or rinse into the bladder. I'm pretty sure this would be agony.

Thanks Indigo. I'm glad your problems got sorted in the end. x

Just read all of the postings on here. I really sympathise with you.
I have inerstitial cystitis, but I wouldn't say I am cured but have very few flare ups these days.
If you eat bananas stop, they are full of potassium and not good for your bladder under these circumstances.
I also still take Amitriptilyne 10 mg at night, but used to take 20mg.
That helps with pain and does help you sleep. Ask your Dr, if you can go back on them.
I also us a herbal remedy called Uva Ursi available from health shops
the one I like is by Vogel.
Back to food and drink elimination, dont drink alcohol. coffee or tea
I now use decaffenated. No tomatoes, oranges tangerines kiwi fruit,or anything acidic.
As one of the posters previously said, once it's established that you don't have an infection, don't drink too much, you're just making it worse
if you do, just enough to be hydrated.
I also use those Uristicks which they use at the Drs to test your urine to see if you have an infection, you can buy them on line.
If they show that you have blood,or protein, or leukocytes, any of these may indicate that you have an infection, in which cae you would need antibiotics.
And lastly, you will probably think I'm stupid,but when in bed, or trying to relax, I used to imagine my bladder was a smooth cool bluish in colour ball.
(That it wasn't hot and painful! ) and gently stroke my lower tummy.
And think that it would get better and try and relax.
Good Luck X

Thank you so much for your reply, ozy. I was on amitriptyline before but have been told I can't take it with vesicare, which is a shame as it was really good during the night. When I've had the cystoscopy and I know whether I've got IC or OAB I'll be in a better position to know what to do. Thanks for all of your advice - I have had 4 good days this week but had chocolate this afternoon and everything has flared up again. I'm so annoyed at my stupidity!!
I'll try he visualisation technique. Good to hear you have your IC under control x

Thank you for your reply. Pleased you have had 4 good days. Have a look at the COB foundation
You can join and receive a quarterly magazine.
There is all sorts of information and you can borrow books and videos.
I'll be thinking of you.