In Agony with Cystitis - Undergoing chemo/radio

Hi all,

It's been a while since I've posted. Yesterday I reached the halfway point with my chemo/radio treatment with 2x chemo, 14x radio and 4x brachy left to go.

I've had a lot of issues with my bladder since weektwo and this has intensified dramatically. The team were querying a UTI at the weekend but the results are 'just' a bad case of cystitis.

All I've been given is paracetamol to take for 7 days and told to drink plenty, but not past 5pm. I'm passing over 2 litres of urine at night time alone, and wake up like clockwork every single hour absolutely desperate for the loo and in agony.

Throughtout the day I'm in a lot of pain with the cystitis and I can't even walk properly, especially after my radiotherapy session. It's gotten to the point now where I couldn't leave the house yesterday because of waddling and worrying I'd be caughty short.

Does anyone have any advice at all? It really is extremely painful and a couple of my radio girls sympathise, but just keep saying wait and see. The primary concerns are that I'm losing more than I should and that since Monday night I've not slept for any longer than an hour at a time.

Any advice whatsoever would be much appreciated! 

Thanks,

Hani 

Hi Hani,

Just hugs I'm afraid :-( Cystitis is a bitch! Had me in tears for much of my life. There's some stuff called Mist. Pot. Cit. I seem to remember is supposed to help, tastes a little lemony, ask your GP. It's very probable that it's the radiotherapy that has set this off so your MDT team should be able to help as well as your GP.

(((((HUGS)))))

Tivoli

Thank you my dear. Spoke to the team this morning but it tends to vary who's on duty and they weren't too helpful. They just told me to speak to my consultant about it on Tuesday. It's just bloody agony, especially straight after my radio session! Trying to manage it atm but getting a little down as it's stopping me doing anything.

Shall have to wait it out I think!

Thanks,

Hani =]

Oh you poor thing. Cystitis is a bitch! Can't you have antibiotics? Cefalexin are brilliant for it. I start treatment Monday, bladder problems are high on my list of concerns. Wishing you all the best honey. Hope they can make you more comfortable soon xx

Hi Hani

I didn't get cystitis but suffered terribly with sickness but my advice would be the same. Make a fuss!!!! A bloody big one!! It took me two weeks and two stays in hospital and for me to actually say I wanted to stop the treatment before they finally took me seriously and treated me on different meds. That sorted it out.

 

I can now look back and I realise I didn't say how I'll I was feeling as I assumed it was par for the course. What you have described are not acceptable side effects and are not dangerous to you hut are unacceptable. Make a fuss! Demand to speak to whichever oncologist is on duty that day (radiologist can't prescribe anything) and tell them you want it sorted or they admit you.  If I could zap myself there with you I would do it for you! You are doing really well and they van do a lot to help. Sometimes you have to demand it!

 

I'm sorry if this comes over as a rant but we are all in it together!

Love Anna xx

And barley water I think helps as well. I tended to avoid anti-biotics whenever possible because they would always trigger thrush and the combination of cystitis together with thrush is suicidal!

I agree with Anna, make a fuss, burst into tears, that's usually an attention grabber!

Lots of love
Tivoli
xxxxx

Thank you for the advice ladies.

They were reluctant to give me any antiobiotics but it's been over a week now and it's just getting worse. The wait and see method doesn't do me any good. I think your plan sounds good Anna! I rang the 24 hour line last night and they sent me to my local out of hours who just wouldn't touch me really with not being involved in treatment. Wouldn't give me anything except for paracetamol. I'm being treated at [name removed] Centre and it's quite a drive, but we're trying to get them to see me over the weekend. The woman on the phone did say that the pain shouldn't just be left and she was quite surprised I wasn't given anything.

I think I'm just going to kick up a fuss as you say! It's bad enough that I've got a full whack of the bladder issues, but I've accepted that it's part and parcel. Just want something for the pain really.

Thanks again for your words and suggestions!

Hani 

Hani,

I have bladder problems post-op but different to yours, although really I think it is all about our bladders feeling oh-so-tired and fed up with all the fiddling and treatment. I have a herbalist who is helpful, she is a therapist of sorts too really, prescribed over the phone (message me if you are interested). I am taking cornsilk, nettle and meadowsweet.  I live in a city and could get them from Neals Yard.

Also I had an osteopathic treatment yesterday from a friend, it has made a real difference to my baldeer function, she just rested her fingers on my abdomen and sacrum. She could also explain a lot about what was going on in my bpdy which helped me to understand better.

My friend suffers from recurring cystitis, she taks some pills - I have forgotten their name but will find put for you. 

Lots of love Hani, bladder stuff is just rubbish. however am opposite you you- am setting my alarm to wake me in the night In case I burst with wee.

mitch

The is is my big fear. I am 13 treatments in and have a little discomfort but the diarrhoea and abdo spasm is worse for me.

 

cranberry is supposed to help, plus one of the nurses suggested to me that if it gets bad, sitting in a sitz bath ( a little bowl that sits on top f your toiler seat) and weeing into warm water can be less painful. They also said drinking loads to water reduces the acididty and weeing in the bath ( euww!) can be less painful.

 

from what I can tell ether the bladder or intestine suffers -with me it's the intestine but your bladder is obviously taking the brunt and protecting your intestines.

You shouldn't be fobbed off it sounds like your speaking to the radiotherapy people - they're only good at there job and won't help with anything else. I've had so many uti's and water infections since I've been diagnosed and had rods put into my kidneys and bladder it's unreal! I've always been given antibiotics each and ever time so I don't understand why they won't for you.....Make sure you kick up a fuss with them as your dealing with enough without all of this!

I understand your issue with your bladder as I have a hole in mine and it's a nightmare! It causes me pain and discomfort and I have to wear pads 24 hours a day until I finish my treatment and I am referred to a specialist to sort it out so it can heal as I can't have a catheter fitted as it's kind of pointless!

I hope you get sorted - if they still refuse go to your own gp they have all your records and CAN give you medication as mine has since I've been under treatment

3 months ago I started with symptoms of cystitis but all the tests are negative. Yesterday the gynecologist just touching me told me I have interstitial cystitis. What should I do? Thank you.