Embarrassed but have to ask. Does anyone with SLE... - LUPUS UK

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Embarrassed but have to ask. Does anyone with SLE have urinary incontinence problems??

esky profile image
esky
15 Replies
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esky profile image
esky
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15 Replies
Tonkawoman69 profile image
Tonkawoman69

Hi,

I have tested positive for the lupus inhibitors and have APS Hughes syndrome and I suffer with stress incontinence and problems with my bladder which is under investigation. Going for a urodinamics test this month. Hope that helps not sure its to do with APS or just gyni stuff though.

Andrea.

kittykat68 profile image
kittykat68

hi , not sure if this is what you mean , but i feel like i want to go to pass water but i cant , i can sit on the loo for 20 mins , then give up but the feeling is still there , i also get lots of urinary tract infections , seen gynie unfortuatly he tells me its a lupus thing , hope ive helped

pattismith profile image
pattismith

Only when l laugh lol :) xx

caninecrazy profile image
caninecrazy

since my latest flare began ive had same thing, didn't think it could be lupus to blame! im still begging to be tested for APS as lupus surely cannot be blamed for everything im feeling? (symtoms) glad you asked this question,thankyou x

esky profile image
esky

Thank u all for your responses. I never had any problems with my bladder before being diagnosed with Sle, sjorgen etc. I just wanted to know if anyone else was having problems. I have to wear tena pads during the day everyday and its getting me down. I dont always have any warning and just wondered if it was related to the lupus as i was fine before. It just seems that my whole body is affected somehow. I think i am gonna have to mention it to the rhemy nurse when i go in a couple of weeks. The worst thing will be rheumy nurse is a man - oh the joys lol. thanks all and your welcome caninecrazy lol. best wishes to u all xxx

anbuma profile image
anbuma

Hi I had stress incontinence for years until I finally told my GP and he referred me on and i had the operation to resolve this.not suffered since.it s great not having to wear pads all the time and saving am fortune

Bonnie39 profile image
Bonnie39

I've been getting a Uti every month, just days before I come on. They are bad and I bleed. They also coincide with a bout of IBS.

Had it down as just one of those things I'm prone to, but since discovering I have sle and aps in August. But now I'm thinking its sle as its clearly hormonal.

Have appointment on Monday with GP about repeated bloody utis. Hoping I can get kidneys and bladder checked as the bleeding isn't good.

Hth x

dgleds profile image
dgleds

i have this going on...and burning off and on...peeing normal one day, then next day every couple minutes..or cant get there fast enough...i just been diagnosed with lupus in june, but i told my rhumey about this..he said tell ur gp, might be

Cystitis...But im post menopause only 3 years too..i think that might do it!

dgleds profile image
dgleds

ps/ i have no infection...we checked

Muscatmandy profile image
Muscatmandy

Hi, I've been doing Pilates (started because I've had back surgery and not because of lupus). My rheumatologist suggested it and it's changed my life. My pilates instructor was superb and altered many of the exercises because of lupus. It worked for my back but it most definitely helped with lupus in general and because it's based on using your core muscles and pelvic floor it eliminates "leakage" problems. If you can, give it a go-you feel better mentally too! x

daisyd profile image
daisyd

Morning, I don't have that problem thankfully, but I know it's common.

In our area In UK their are continent, advisors who will come and discuss your problems with you In clinic or at home they are Nurse specialist who will be able to help you

I would phone your Doctors Surgery ask the receptionist if they have one, or you can see practice Nurse or Gp.

Try not be embarrassed,easier said than done. Their are thousand of people like you out there

Good luck, do it today xx

misty14 profile image
misty14

Hi Esky

I have bladder problems like you caused by inflammation, I've had tests and been diagnosed with Interstitial Cystitis and take Oxybutynin once a day for it that's been helpful. Hope you get some help as it's not a nice problem and we have enough to deal with. x

Wrenmuzz profile image
Wrenmuzz

My rheumy referred me to a specialist when I mentioned this problem. I was given medication and advised to cut out caffeine (gloom) and cut down on tomatoes too. I still suffer occassionly but there has been a vast improvement over the 3 months.

Nonanona profile image
Nonanona

I've been doing kegels since I was in my 20's and never had any problems. I'm 67 and have recently found that I urinate more frequently and when the feeling comes over I MUST get to a bathroom immediately. Some times I pass a small amount of urine before I can get my pants off.

skoll1975 profile image
skoll1975

Hello. Do you have already any response from your doctor about sle and urinary problems? I have Hughes syndrome and urinary problems and no doctor knows if the problems are relationed! Thans

Luis

Portugal

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