Constant cystitis symptoms, painful bladder and really fed up

[bananamilkshake1]

Hello - I'm really hoping someone might have some advice on next steps I could take as I'm almost at my wits end with this.

Last December for the first time in my life, I got all the symptoms of cystitis (I'm 48). I have spent the best past of 9 months going back & forth to my GP & provided endless urine samples only to be told the sample is clear & no further action is necessary. I have forced them to give me antibiotics (they did manage to grow something a couple of months ago) & antibiotics do take the edge off the pain but after I stop taking them, all the symptoms return.

I have been for scans for bladder, kidneys and ovaries (as I was worried there may be something going on there) been tested for STI's & have even paid for a private smear test - all have come back clear.

The pain can at times make even walking difficult. I'm pretty fit and run 15k per week, cycle etc but some mornings, every step I take running "pulls" on my bladder. I have been doubled over in pain & have resorted to cocodomol (the only thing which seems to help) & am finding it increasingly painful to have sex with my DP. Mostly the pain is located in my bladder, but I have experienced deep vaginal spasms which have taken my breath away.

I have demanded a referral to a urologist which is coming up next month but I am wondering whether anyone has had experience in this area? It's actually reduced me to tears a few times when I phone the GP & they are pretty much saying there is nothing wrong with me when I know that absolutely there is.

Can anyone help?

Thanks so much. x

Sounds very much like interstitial cystitis: www.nhs.uk/Conditions/Cystitis/Pages/Complications.aspx

Hopefully your urologist will be able to help you. I have overactive bladder and had major surgery back in April which hasn't worked, and am actually worse off than before. I agree its a nightmare, and people don't really think of bladder conditions as being serious, but they truly are. I'm still off work and no-one is sure of the next step, as I haven't reacted in the same way as any other patient apparently, so its a bit scary.

Good luck.

Do you drink a lot of squash or water/coffee?
I think utis are more common towards menopause.

Tea does this to me. I was ill for months and didn't realise what was going on until people here suggested drinking only water for a few days to see if that helped, which it did.

My bladder has healed now and I feel good, but can never drink tea again.

I had an attack on holiday. Was prescribed this by a Belgian pharmacist.
It laid me low for a day, but cleared up the problem. You could ask for it, only available on prescription.

www.fannin.eu/products/monuril/

Please go to the COB Foundation website. masses of info there. You might have the start of painful bladder syndrome (IC) and if you treat your bladder carefully now it might subside.
As from now cut out all tea coffee alcohol fizzy drinks squash and fruit juices, spicy foods, chocolate ( contains caffeine) and anything acidic like vinegar, sauces, tomatoes.

If you are in peri menopause then you might find that local oestrogen used vaginally will help too - ask your GP.