Bladder problems with connective tissue disease

Anyone out there suffer horrendous bladder problems?suffering the most awfull bladder spasms and pain ,feel like need to pee constantly .Antibiotics worked for a while, now dont make much difference,urine dipstix say cells and protein ,but when sent off for testing come back clear,so frustrating ,due to have a flexible cystoscopy in jan ,but dreading the thought of it ,sufferd like this for years but as always last 12 months constant.any advice would be fab ,thankyou all ,brave

11 Replies

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  • I'm not sure which abdominal pain i have would come from the bladder, to be honest, so not that sure whether I do suffer specifically from that. But if you have identified that you have spasms, maybe suggest to the doctors to give you some anti spasmodic medication? Just a thought. I hope it improves, it must be driving you mad!

  • I feel your pain, I used to suffer recurrent uti's and now I constantly have a pressure on my bladder, need to urinate urgently sometimes and sharp pain. The gp believed it to be urethritis and my specialists advised the next time it flares to get a Swob done. they said it could be to do with the lupus though. mine seems worse after sex as well unfortunately. I do hope your pain improves. Not too sure what else to suggest really but our bodies are made up of connective tissue pretty much everywhere so its possible that its am inflammatory response but best to check with your specialists. Let me know how you go.

    happy new year.

    Hels

  • Don't worry about the cystoscopy - piece of cake.

    Our autoimmune conditions can affect the bladder and/or kidneys. Either could be at the root of your problems, both need checking out.

    I've recently had a cystoscopy, then a bladder biopsy for persistent blood in the urine. Also lots of clear culture results like you. No particular causes found, other than benign polyps. From my own research, probably 'just' chronic bladder inflammation from Hughes and Sjogrens. Nothing to be done about it.

    I don't have pain, though, so that's more of a worry in your case.

    Certainly constant antibiotics are not the answer.

    Do painkillers help in the meantime, while you're waiting for investigations?

    All the best, JudyCoppernob

  • I know how miserable bladder problems can be, I hope you get the help and treatment you need.

    Best Wishes

    Lillylou

  • painkillers dont help ,antibiotics ease for a while,its been ongoing for 15yrs just worse of late ,i suspect the cysto will be normal , i will request a 24hr urine culture ,i had ultra sound on kidneys all normal ,ultrs sound on bladder was normal,i get cloudy urine ,microscopic blood and protein and casts ,im not sure what kinda more indepth kidney function could be done?i will ask urologist ?ive started some probiotics on a regular basis in the hope it will keep bacteria away?thankyou

  • Hi Everyone here's to A HAPPY 2013. I have decided to try a different coping strategy this year is going to be about putting Lupus in its place and putting me first Lupus has ruled the roost long enough.I am due to start a weight loss programme being run in my area by the NHS.I have also found a swimming pool with very good access & disabled changing room.I figure that even if I just do some walking in the pool for a few minutes the exercise will have a positive affect on my wellbeing.I am due to start this on the 7th Jan, will let you know how it goes........I'm not expecting miracles well maybe just a little one.So heres to the FEEL GOOD FACTOR FAIRY I hope she sprinkles us all with some of her magic dust in 2013.

    Best Wishes

    Lillylou. x

  • I have terrible bladder problems... Yet again have another infection which has made me really poorly - not got a cold on top of it all.

    Feeling sorry for myself...

    xx

  • Make sure you get a culture, not just UA. I was treated with antibiotics, then started having cultures, they came back infection free, There was WBC's and RBC's in my urine. I have terrible pressure and pain in my bladder and have to go to the bathroom about every 1-2 hrs. Good luck.

  • Hi brave, I totally understand how your feeling, I'm going through the same as well. I have terrible problems with urgency and frequency, back pain too. I too have had urine tests where dipstick shows protein and small signs of blood, but when sent away they come back clear. I found that antibiotics didn't make a difference. I had scans and xrays done on my kidneys and bladder, all results came back clear. I have had a flexible cystoscopy(please don't worry about it, it's not painful, only a mild discomfort), where they found inflammation and wanted to take a biopsy. I had to go back for a rigid cystoscopy to get the biopsy done, but the inflammation had gone (even though I have my symptoms 24/7). I was then put on some meds to see if that improved my symptoms, but they haven't, they were Vesicare, Detrusitol and now Toviaz. Had appointment with Urologist on Xmas Eve and he is going to arrange for more tests to be done(not too sure what it will involve, but I will do anything if it means symptoms will improve). I queried whether problems could be Lupus related, but Urologist would not commit himself to an answer. It's nice to know that I'm not the only one going through this. I wish you all the best and hope that things are resolved for you quickly. Samantha x

  • Hi there I have just came across this site so apologies that this reply seems so late. I had MCTD diagnosis 11 yrs ago. Initially on azathioprine, florinef and prednisolone, after 1 year I was taken off azathioprine and changed to plaquenil. I now also take amytriptyline and co-dydramol. I have had recurrent urinary tract infections for the past 24 years I have undergone 2 cystoscopies and urethra stretches and now take 1 antibiotic at niht as a preventative.....not ideal being on so much meds but it allows me to lead a relatively normal life. My main issues have always been pain, muscle weakness, fatigue and a chronic dry cough. Im still managing to work having good and bad days, more often good days. Hope this info helps others.

  • Yes I had this for a few years, then was given the option to have Botox injection to the bladder area , fantastic no more problem, ask your gp about this. Good luck.

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