Embarrassing problem of incontinent during flare ... - LUPUS UK


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Embarrassing problem of incontinent during flare ups!!!!

Lisalou19 profile image
22 Replies

I’ve always needed to empty my bladder very regular. Usually 15-20 times a day. Lately as I delve into the world of fatigue I have noticed that why I still need a number 1 as regularly, I can not hold my urine in. I get no prior warning and make it just in times (sometimes)

I literally feel like my body is failing in so many areas that I can not control 😔

Is this a similar experience for others?

If so what diagnosis is linked with it?

I’m not hear looking for the diagnosis I’m just concerned if all this is really happening to me and possibility . Some days my hands don’t work, sometimes I can swallow. This all appears muscular related.

I find this area most difficult as I can not venture to far in fear of literally setting myself.

22 Replies
Lisalou19 profile image

Many errors with my spelling in that

Can’t swallow and literally wetting myself

pegsangel profile image

I too cannot hold my urine, and without notice... I am hopeful to read this post, Thank YOU! I told this to my GP recently. She wants me to go for physio to strengthen muscles... she's saying this has to do with my age. I call horse poo. Just out of the blue last summer this started happening.

Lisalou19 profile image
Lisalou19 in reply to pegsangel

I’m 37 , I have 3 children the youngest is 5 not had any problems until what ever it is I have escalated since January.

To me this is a symptom, annoying one too. It only happens during my flares, once I come out of it I’m back to normal which means I can control my muscles and bladder when healthier.

It worries me as I feel like I’m loosing control of my body!!!!! I have an appointment 6th June

Sorry to hear this is a problem for you too :-(


Barnclown profile image
Barnclown in reply to Lisalou19

Hello lisalou: am v much relating to your descrips of urinary incontinency during SLE flares. In my case this also happens during infections, which usually do bring on a lupus flare. My lupus was infant onset. I am now 64.

This recurring pattern of urinary incontinence when my bod is under stress from Inflammatory Process has definitely been one of my characteristic signs & symptoms. am infertile (long story) so the effects of bearing babies isn’t causing my version of this, but i do have Hypermobile Ehlers Danlos Syndrome and early onset Primary Immunodeficiency Disease (featuring below normal range immunoglobulin A which is relevant to urinary tract function), and all my life i’ve had Intestinal Insufficiency which is now segueing into Intestinal Failure. I also have secondary sjogrens + small vessel vasculitis. My consultants all acknowledge that my overlapping conditions all affect my urinary tract function, in various problematic ways.

Lucky for me, my nhs gyn did refer me for this to nhs womens health services physiotherapy when i was in my early 50s (that was when the urinary incontinence during flares became worse because my lupus wasn’t adequately medicated). I’d thought whsp wouldn’t help much, because by then i’d been doing pilates for years so figured my pelvic floor was v fit. But the whs physio DID teach me routines that have strengthened my pelvic floor even better...and only 3 years ago i saw whsp again to check & applaud my pelvic floor fitness (& train me in defecation dynamics re the Intestinal issues)

BUT i still have urinary incontinence during flares & infections, although relatively less often & relatively better controlled thanks to whsp training + because rheumatology & immunology have me more adequately medicated.

SO my version of sporadic urinary incontinence is not “just” about pelvic floor fitness or having had babies - these are excuses lots of lazy medics make for urinary incontinence. other excuses include age-related over-active bladder etc etc - my hero urology surgeon says that there are lots of women who’ve been told they have over-active bladder and a high proportion of these actually could reduce the frequency & urgency with womens health services physio training)

I hope something in there helps...apologies for going on at such length. Hope you’ll let us know what the consultant says at your june appt. take care, try not to let anxiety flare...my experience encourages me to believe you can & will sort this out: you are clearly v self-aware and good at presenting a well rounded description of your health probs...both are key to getting the best out of consultations

🍀🍀🍀🍀 coco

Barnclown profile image
Barnclown in reply to Barnclown

PS i haven’t gone into the way my upper GI tract has always been & still is affected by my overlapping immune dysfunction & connective tissue disorders, but over the decades my chronic upper GI issues have all been investigated, diagnosed and are mainly responding “well” to treatment although i do have to lifestyle manage these conscientiously...i mention this because trouble swallowing is one of my persistent characteristic upper GI tract signs & symptoms. The combination of issues you’ve described in your post up top, do make me wonder: have you been examined for a hypermobility syndrome?

And my limbs inc hands & feet have always gone wonky, floppy etc...this has also reduced since i got on the right meds

Barnclown profile image
Barnclown in reply to Barnclown

PPS MedPage has just posted this interesting report re patterns of comorbidity in female urinary incontinency:


RenoGem67 profile image

Hi Lisalou19. I have some problems with this as well during flares and also swallowing issues. Feels like food gets stuck above my stomach. It’s amazing how much connective tissue we have througout our bodies. I’ve literally felt like I’ve been punched in the nose and ear(cartilage is connective tissue).....such a strange terrible disease. I totally understand how frustrating it is. Sending you strength and well wishes from Northern California.

LalSD profile image

Hello all, thank you for this post and I wish you best and strength to cope with these issues.. My daughter has the same problem, no control over her bladder and we did not know what to do, have been worried sick. But knowing there are others who has the same problem out there I now know it is a symptom of Lupus. She is only 22. I am SLE sufferer but her symptoms are much worse than mine at the moment. We are trying for her to use the bathroom regularly and trying to get the body use the muscles again. Not sure if it is working but we keep trying to beat the beast. With love, L

Lisalou19 profile image
Lisalou19 in reply to LalSD

I try so hard to fight every symptom, but this one is a hard one, as I loose complete control. I’ve learnt to stay in on these days , which is unsociable but saves on the embarrassment. I feel for your daughter, I don’t know what the solution is other than to look forward to better days, and notice that you can control that part of you. It is so lovely that your daughter can be open about her symptoms with you too xx

Jhpc profile image

Hi, I had a bad flare up a few weeks ago, my legs were so sore, the following week I couldn’t stop going to the toilet it was as if I was pregnant again, and I’m no spring chicken lol. Very stressful. I didn’t have a urine infection though the doctor gave me antibiotics and this helped. Flare up was stress related.

Hope you get the help you need.

grannypat68 profile image

Morning Lisalou19.

Sympathies. You are not alone in your dilemma. GP calls it ‘overactive bladder’ - I call it a lot more than that - most of which under my breath as a lady shouldn’t be heard to utter such language 😂😂

Location of toilet facilities always part of any trip, long or short. At home toilet doors must always be open and seat at the ready for me to make fast entry and avoid delay in sitting. I have more underwear than M & S, and spares of everything always in the car. Should be a shareholder in Tena 😂. Have had cystoscopy, scans etc and no major problems evident. Not always such a severe problem, more often when other things simmering away.

It has become a bit of light entertainment for my husband and I when sitting of an evening- - need the toilet NOW - - stand up - - knees and hip seized up - - dog and cat in the way to the toilet - - will she make it ??

Sometimes you just got to lighten a very frustrating and perhaps embarrassing situation.

So fortunate to have a great understanding and sympathetic husband who helps me along every step of this weird and wicked journey- life is never dull - always another surprise around the corner. Laugh and shed a few tears together 😭😭

Don’t let the ******* grind you down 🙇🏻‍♀️🙅🏻‍♀️🤷🏻‍♀️X

Lisalou19 profile image
Lisalou19 in reply to grannypat68

Love your response, you literally sound like me. God forbid that toilet seat is down 😅!!!!!

I feel so ashamed about this response. I have 2 teenage daughters who think I should invest in adult nappies! They mean it in a joke way, but I can see myself in time being stuck on a sofa daily, dressing gown on and an over sized nappy to save the mega rush !!!!

I’m pretty strong minded, so always fighting this beast, just can’t seem to get the control down there 😔x

grannypat68 profile image
grannypat68 in reply to Lisalou19

My two daughters tease me about my little problem too. They are little older than teenagers and have their own children. When we go out they always ask if I’ve been!! Do I need to go again?? Tell me I’m just like Granny (now sadly deceased) who suffered bladder problems for many years, and who we used to tease mercilessly on any road trip (poor granny👵🏻). I imagine my granddaughters titter behind my back.

Got a long awaited appointment with new rheumy tomorrow- yeah!! Will bring it up with him, along with 101 other questions I have noted to raise with him - poor guy 😂😂

Hopefully will get some decent answers because never had one yet in five years.

Lisalou19 profile image
Lisalou19 in reply to grannypat68

Good luck for tomorrow.

It’s a tiring battle these diseases. I don’t think there’s a doctor I’ve not seen. Let me know how you get on xx

grannypat68 profile image
grannypat68 in reply to Lisalou19

👍will do 🤞x

Lisalou19 profile image


Your responses have been so overwhelming, thank you all. It has been a problem I haven’t disclosed but wanted to mention it here.


Barnclown profile image
Barnclown in reply to Lisalou19

SO GLAD you have posted about this, lisalou...this has been a GRRRREAT discussion!!!!! I had never in all my years realised others here get urinary incontinence during flares...either it’s never been posted about or i just missed it (but i am always here reading lots most days).

So am sending you a BIG THANK YOU! Take care &, again, please do let us know what you find out about your version of this....i’ve survived decades of suffering to encounter the right medics who could help figure out my version of this (and mine was often accompanied by what my consultants call: chronic sudden severe onset persistent antibiotic resistant infectious urinary tract disease with pyelonephritis....thank goodness my heros at urology & immunology clincs figured out how to manage this!).

I think you’ll figure your version of this MUCH faster than i have (i only found this wonderful invaluable forum 7 years ago) XOXOXO

Lisalou19 profile image
Lisalou19 in reply to Barnclown

This forum is becoming my saviour. I’ve suffered for 14 years but progressively worse since birth of my 3rd child in 2013.

I will mention this problem @ my appointment and hopefully get some information to share with you lovely people xxx

Barnclown profile image
Barnclown in reply to Lisalou19

Me too...can’t imagine coping with all the stuff that hits me without EVERYONE here

Good Luck....try keep your funny bone happy & healthy XOXO

ellejay46 profile image

Hi Lisalou19! I also started having incontinence, due to a neurogenic bladder after transverse myelitis. I do self-catheterisation to empty my bladder before going out and I’m also on a drug called oxybutinin to reduce bladder muscle contractions. Despite these measures it is still hard to avoid embarrassing accidents outside.

I’ve recently been referred to occupational therapy, to learn some exercises which strengthen the pelvic floor muscles (they’re called kegel exercises if I’m not wrong!)

Wish u all the best xx 💪🏻💕

redted profile image

My Dr perscribed Ditropan,I no longer have to worry about getting to the loo in time,just on small tablet a day, it works for me.

rubina786 profile image

Same issue here...I first put it down to having too much green tea but it still happened even with just 2 cups a day.

A friend showed me an exercise that helped within a couple of days. I can now hold it for 5 to 10 mins and much longer ie few hours if I don't have too much to drink.

The exercise is similar to what they do after childbirth. Lay on your back with knees up and lift your bottom up and squeeze and hold for few seconds. I manage to do this about 10 times...can even squeeze and hold sitting down and anywhere now few times a day...what you squeeze are your lower bits which strengthens the muscles round your bladder I expect. Anyway it works for me. Going out for more than 30 min was impossible for me prior to this!

Maybe thats what the physio might help with and why it was recommended.

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