Has anyone else experienced urinary/bladder discomfort as part of a flare?

I haven't so far had any organ involvement, so when I was in bed with a recent flare and also had discomfort in my bladder (aching burning/cold sensations with urge to pee a lot) I assumed it might be a urinary infection. My GP thought that was likely, and I'm on the last day of a 3 day course of anti-biotics, but this hasn't shifted it. The urine test also came back negative. Is it possible that the lupus flare has inflamed my bladder? I'd not heard of this before, so was curious if anyone else has. I plan to go back to my GP.

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  • I had a recent wee flare up (I too don't have any organ involvement) and I saw my GP with similar symptoms. My urine dipstick was negative, and the GP sent my specimen away for analysis, which proved negative too. He didn't prescribe any antibiotics, despite me complaining of a feeling of a knitting needle going through my bladder!

    I put it down to some sort of irritation and as my flare subsided so did the symptoms.

    I'll watch your post with interest to see if others also have this problem, and to see how you get on at your GP, as I thought I was just being paranoid! It's good to know I'm not alone.

  • hi there guys i have recently had the same problem i have no organ involvement either, i had a coarse of antibotic but all uring test came back normal.i also had a kidney scan to check to see if some thing was going on but every test came back normal. i might have a word with rhemy/ doctor and see if it could be connected to the lupus

    stay wel guys

    angie x

  • Yes I have on going for two plus. This I have been hospitalised twice due to infection and frank heamturia, last week, I had a flexible cystoscope, and they found my urethra lining has completely changed, they call it squamous metaplasia, also had a large bleeding lesion present.

  • So glad to read your post and everyones comments. I do have mild kidney impairment ( GFR is dropping at each blood test ) and have frequent bouts of of UTIs/cystitis/ or whatever. Sometimes specimen is positive and it's treated but more often than not it is negative and then Dr takes no action other than to say, ' well that just leaves you with pain on peeing and discomfort'. I tend not to bother going to Dr each time and Lupus clinic make little comment if specimen negative at time of testing.

    I have read about Interstitial cystitis, ( basically inflammation ) lots of stuff on internet, but nobody has ever mentioned it or seems terribly bothered.

    This site is so helpful.

    Foss

  • hiya everyone yes i too keep on having bladder trouble pain going a wee keep on passing urine back pain fever was put on antiboic i get this about every 6 weeks. not very nice now i am having alot of trouble with my legs. i want to walk but legs wont let me 2 much pain when i sit or go to bed they throb like mad then get pins and needles in them dr as put it all down to lupus.

  • Hi I was having a lot of pain in my bladder and frequency of passing urine last year. My GP gave me antibiotics and sent my urine for analysis but it came back negative of any infection. I do however have lung damage caused by the lupus. At the moment I am having burning pain in my lower back across my kidneys so I am praying all is well.

  • Yes , I too get this. I have had antibiotics but I feel as tho everything around that area is maybe inflamed and so makes me feel like I have cystitis.

  • Hi, Interstitial cystitis is associated with lupus and gives you the same kind of symptoms as an infection, but it can be treated [just not with antibiotics] so if your symptoms don't clear up, ask to see a urologist

    Margot x

  • Terrible trouble with cystitis here at times.

    Especially when I first 'got' lupus (which looking back now was when I was diagnosed with chronic fatigue syndrome - I was around 12-13) I had a constant, and I mean constant problem with cystitis. Pain, needing to go, sometimes just sitting on the loo with a warm flannel and crying, peeing blood... my GP accused me of being 'dirty' so I stopped going about them. I started self treating it with tea tree oil on a panty liner and didn't even tell my mum about them anymore...

    Luckily it's mainly gone, but if I'm flaring I do often need to go to the loo a lot more and get kidney pain. Find myself waking in the night needing to go.

  • Hi everyone,

    Thank you so much for all your comments, that's really helpful. I'm due to see my rhumatologist soon so I'll definitely mention it. I'm back in bed with a flare, and the urge to pee is still just as strong (and annoying!!) so I will ask whether it could be interstitial cystitis. Sorry to hear some of you have been suffering with it for so long, I would suggest making a fuss about it, especially if it might be treatable! It's a miserable thing to live with.

    Wishing you all well.

  • Wow, I get those sensations all the time!...never knew it was so common!...I asumed it was inflammation in the bladder. It usually goes of its own accord but good to know something can be done if it doesn't go away

  • OMG - Thanks guys, like my name, I'm new, but been treated by GP for bladder problems, 4 mths? that I mentioned to the Rheu Dr yesterday - that's when he started by ginving me the leaflet etc, as along with my other symptoms.....

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