LUPUS UK
21,179 members16,761 posts

Diagnoses and bladder incontinence

Firstly...i was diagnosed with Lupus via a routine blood test.....just a one off.

tests have been clear since but i have all the symptoms of lupus.....foggy spells,tiredness,sore swollen joints,gradual worsening of eye sight later in day if tired and i have been psychotic on one occasion and tired all the time..no energy.headaches........

AND

i suffer from bladder incontinence when i have an episode.........

firstly as bloods clear, does that mean i no longer have lupus and secondly, does anyone else suffer from bladder incontinence. i can feel im tensed up below and have to get to the bathroom very quickly or i will have an accident which often happens. its not an infection of any sort

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also i would like to add that i have epilepsy through head trauma and scarring on the brain....so i have had seizures and am on Lamotogine and gabapentin .....plus i started taking Kelp tablets which has got rid of my fluid retention...so no swollen ankles/legs and face.

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Hi. Yes i have suffered with incontinence for a few years. So bad that i gave in after all the meds and urodynamic tests that i opted for a supra pubic catheter (where they put catheter in through lower stomach) I was so tired with getting up every hour through the night and needing the loo all the time in the day along with Lupus fatigue i couldnt carry on like it. I have urge incontinence and no control over bladder. I cant get any answers as to why this has happened or if it connected to Lupus, and i am still looking for an answer. In my urologists words, bladder is knackered. I too am having probs with psychotic episodes and am waiting to see our local mental health team so i know where your'e coming from. I'ts a living hell isn't it. Hope things get better for u and youre in my thoughts.

Regards caz59 x

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Hi Caz59.......i hope you get sorted hun...but i will say, whilst i was being cared for by mental health team...they have to administer all meds. they wouldnt order in my epilepsy meds in advance so i had to go without at times if my own supplies ran out.

i found the whole experiance to be my biggest nightmare and hate my husband for allowing them to treat me. the doctors were cruel and i was forced to take psychotic meds which made me so aniemic i couldnt breath properly...and when in a medical hospital they detoxed me of all meds and ordered that i be taken off psychotic meds as it wasnt a mental problem,just a fit that left me disoriantated or reaction to epilepsy meds......i never want to be involved with a mental health team again for as long as i live.

however good luck to you and i hope you get sorted hun....if you ever want to talk im here xx

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Hi sharonleane. Thanx for kind offer to talk. Got appontment thru for MH team, end of Sept. See what happens then. Dont think i will have to be an in patient, i hope not anyway. Also got letter from Jobcentre plus, got to be assessed for ESA, no doubt, alot of stress from that also. Couldnt have come at a worse time hey ho! Thanx again.

Regards

caz59 x

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yes it is a stressfull time....DLA is also as of next year going to be regularly assessed and awarded as per health limitation...!!

i fear for people with hidden disabilities as i dont think we are given a fair assessment at all. if we look ok then we must be ok....right???.....pppfffttt!!!

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