LUPUS UK
20,815 members16,530 posts

Can't Hold It

Ok, friends. This is a little embarrassing to discuss, but, Y'all will understand and not judge. For the past several months the urge to go pee just hits all of a sudden, not a slow build up, like I will have to go in a few minutes. When it hits, the feeling is like I've been holding it for hours, but didn't have the urge until that second. Before I can get to a restroom, it will start dribbling out, I have no control over this. I have seen my urologist, they ran a light down me ( for those who don't know me I'm a guy) into my bladder, they found no problems, prostrate check was normal. They are telling me, due to lupus the mussel that controls the bladder is getting weak, and that it may get to the point I can't control it at all! Not only that but, sometimes I have to go pee every 15 to 20 minutes!

Does anyone else male or female have an issue like this, and has anyone found anything that will make controlling it better?

Wishing Everyone a HAPPY NEW YEAR!

35 Replies
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Loads of women have problems with urgency and frequency - mainly it is due to poor pelvic muscle tone after childbirth and that can be improved. I don't know if the same applies for you gentlemen or in the context of lupus. This article does explain the options:

webmd.com/urinary-incontine...

There are specialists in managing incontinence - I doubt the average urologist would concern themselves with the nitty-gritty of day to day living. Look for one in your area. In the meantime - the link above should help you get your head around it.

Over on my home forum we often joke we should have taken out shares in Tena - or asked them to sponsor the charity ;-)

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Thank you for the information!

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I was given a tip to try to retrain and strengthen the bladder and found it works for me.

When you go, stop and start at least twice every time. Also stay close to the loo if you are desperate but try to hold for two minutes, gradually increasing the time before letting it go.

Have you been checked for interstitial cystitis, (sensitive bladder)? There may be some help to control it. This link helps to explain.

mayoclinic.org/diseases-con...

Hope you manage to get some relief very soon.

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Thank you!

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Dear bluebell99

Hi, that is all very well but what if your entire pelvis is frozen? I have no pelvic floor control as I can't feel it at all, it is completely numb. Like the original questioner, when I have to go I have a few seconds at best with only a couple of seconds warning, not usually that successful a system. (I am female btw). My genitals are numb inside and out, I have severe stabbing and burning pain in my insides and the surface. It has now reached the point where I can't even think about sex without experiencing horrible pain. The neural pathways from my aroused brain reach a screeching halt when it heads south. I am having tests done under one of the best Neurology Hospitals in the world, in London but it is slow going and we still don't know.

I can't walk properly either, or stand or dance or even jig about slowly! If anyone has any clues I would value knowing. My 3 yrs younger sister has MS and it does worry me I may be going the same way.

I also have lupus, sjogrens, fibromyalgia and neuropathic pain from MP in my right leg. This started when I was 49; I am now 56.

Peace and pain relief to all of you. x

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Hi

My goodness, poor you, you do have some very awful, complex and unfortunate problems.

I can only speak from my own experience about what worked for me, but I do understand that what works for one does not necessarily work for another as we are all different.

I wish you a speedy diagnosis and hope that something can be done to help you live your life better and to the full.

Best wishes for 2018.

Xx

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Are your kidneys doing okay? I know at the worst of my kidney problems, I had to pee like a racehorse and there were times when I damn near didn't make it in time!

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Yes, kidneys are ok per doctor?

Thank you!

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I experience what you describe and "embarrassing accidents" when I have a flare... something to do with bladder inflammation I was told. How are all your other symptoms? Are some days better than others? I hope your Dr can find the right treatment for you

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No days are any worse or better, every day is about the same?

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Hi mate I’m work on a building site in the uk and for some yrs on and off especially when cold the urge just comes on it’s like bam got to go but the worst thing is when I’ve emptied my bladder I’ll dribble walking back and sometimes it’s like I’ve peed myself ,3 month ago got taken to hospital with kidney stones 😭and when they scand me they found an anal fistula had surgery the only up side was for 3weeks I had to were like a male pad not good for a 48 yr old man but it also made me realise how much I leaked ,I also get reacuring uti had my bladder mri and it showed like a pocket which wood not empty this then sits there and gives me a uti are you shure you have not got a mild uti that won’t go away as when I’m leaking more than normal it is normally a sign I’m coming down with a uti don’t ignore it I did last yr my wife made me go to hospital I’d got sepcis (the sepcis and fistula were caused by the methatrexate I was taking for lupus /ctd been off methatrexate hor 3 month and simptoms are coming )what I’m badly trying to say is don’t worry about it the stress will only make it worse if you go out to a public place where a pad you can’t tell you’ve got them on and you have no stress no worry trust me you can’t tell all the best

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I do get UTI 2 to 3 times a year, I do take methotrexate. Cold or hot does not seem to change it? Yes it is embarrassing to dribble before you can get to a restroom. Even if I'm working around the house out side, I live in an extremely rural area so if the urge hits when I'm out side, I'm leaking before I can get it out!

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Could you see a physiotherapist about exercises to strengthen your muscles? This will help.

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I will have to check, I have not even considered this?

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Hi Tiras - sorry you are having this problem. As Cathie says - many women, myself included, have had the problem you describe and find that doing pelvic floor exercises (invisible so can do them anywhere, any position, at anytime) really help. I don’t know whether the male anatomy lends itself to this form of exercise but I don’t see why it wouldn’t.

Best to find a physiotherapist who can help you build up your muscle tone around your bladder.

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It’s quite simple and won’t involve a long course of physio - women have this problem frequently. Also exercises like qui gong could help general muscle tone. Good luck!

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Here's an instruction sheet on pelvic floor exercises for men guysandstthomas.nhs.uk/reso...

Note that the consensus seems to be that you do them routinely 3 times a day, but not while you are pee-ing. x

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Thank you!

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Always When I laugh.....but yes, I do get sudden "gotta go now"

I am really beginning to hate Lupus....when I was being tested, I wastested for dermatamyotosis(sp) that AI scared the heck out of me...when it was determined I do NOT have Dermatamyiositis(sp) I said Hurrah, I "just" have Lupus.... Now "just" having Lupus isn't "just" to me anymore....even though I do not have organ involvement and am fortunate for that

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Unfortunately, for me it could be anytime, not doing anything but sitting and watching TV, the urge all of a sudden hits, and wham I'm leaking, little dribbles is the best I can do to stop it, and that is trying so hard to contract the mussels to stop it? I still get wet spots? I tried yesterday to wear the absorbent underwear, well guess what, the plastic and elastic leg openings rubbed me raw (due to skin thin due to lupus) where my legs join my torso! So now what do I do?

If I had warning even just a few minutes, I may at times can hold it maybe a minute and that is about it?

Have a good Day!

Tiras

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Maybe woman's pad(all sizes).... stick in your leggings wear you leak

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I suppose that is a thought, I could try it at home first see what happens. I wonder if it would stay in the correct place to absorb drops?

Which brings us to another problem, what about summer. I don't wear leggings under clothing then?

I'm about to the point to tie a knot! 😂😂

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The link I sent you shows about men's pads - and they are shaped to sit inside underpants.

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I think it is likely it would stay where you stick it...worth a try...go with a brand name..they probably have better stick ...summer??? Short length leggings??

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Hi friends, I know this is a UK board, I am from the US, so I hope it is okay to post here.

This totally makes sense to me! I too am a man, and some years ago I experienced something very familiar to your case. The sensation or urge to urinate wasn't there until at a critical stage. It started out as dribbles before I could make it to the toilet and I had to wear men's pads just in case. Then I lost control completely, it would come on I would just barely feel the urge and boom it just happened. I had to resort to an adult diaper. I started doing timed voids, just go stand at the toilet and try to force myself to urinate, at equal intervals this reduced how many times I had an "accident". It eventually got better and now I am able to simply wear a thick pad. I have had only two times in the past couple years that I had an accident.

My problem stumped many doctors and urologists even at the Mayo Clinic in Rochester MN. They could not tell me why it was happening, the doctors could only say that the problem was detrusor overactivity, and I almost felt like they were saying it was just in my head.

Mine was muddied up because at the time, I had recent back surgery to repair a broken vertebra at L-5, and had a spinal fusion to S-1. They were searching for nerve damage at the site either as a result of my injury or from surgery.

Recently blood work indicated a probable diagnosis of Lupus, I see my doctor in a couple of weeks, and will get the actual diagnosis then. But your case and the input of others makes me feel a little vindicated, that it was not just in my head. I wish you the best and hope that your progression is not as deep as mine.

Try doing timed voids just go and stand at the toilet and try to force yourself to urinate, on a strict schedule whether you feel any urge or not. It is kind of like potty training all over, it saved me many accidents and worked pretty good.

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This is listed as Lupus UK but, it is for all with lupus. I too am from the US. I have made a lot of friends from around the world here, I have also gotten a lot of help and good advice from here also.

I do have Lupus (SLE) I have skin, joint mussels, and organ issues. So I'm not sure what is going on, could be an onset from Lupus? Thank you for the information.

Wishing you a HAPPY NEW YEAR!

I don't know what part of the US you are from but, I'm in Alabama so with that being said

ROLL TIDE!

Tiras

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Hi Tiras,

I am from chilly Wisconsin, -15 actual temp tonight wind chills around -25, you could send some warmth this way if you can!

Happy New Year to you too!

Charles

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Well we have cold weather on the way here also, not as cold as you! We will be in the mid teens Sunday and Monday nights with mid 30's for our highs. That is extremely cold for us!

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Hi chommen,

I hope I’m not speaking out of turn here but as far as I’m concerned you’re just as welcome on this forum as the next person. I have learned from experience on this forum that no matter what gender, nationality, race or religion everyone is welcome. We all suffer in our own ways and everyone is individual but sharing problems on this site helps in so many different ways! So all you people out there please get involved, you WILL be very pleasantly surprised!

Good health to all,

Wolf_1 🐺🦋😴💤

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Thanks for the kind response, I appreciate it! I thought maybe it was okay but just wanted to be sure.

Thanks,

Charles

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I am from the US also. Presently living in Michigan, originally from Paris, Tn. My youngest son lives in Lexington, SC and wants me to move there. Will probably make the move next summer. I don't want to spend another winter here. I dread trying to find new doctors. Any advise on locating new MD's would be appreciated.

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Hi Tiras. I had the problem in the past but not so severe, until I gave sugar tests and found out that I have diabetes! It was much annoying! I woke up on nights frequently and had much problem at work, in trips and in social gatherings. Now I take metformin 500 three times daily and I have not the problem at all. Check your blood sugar!

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The doctors have checked, and my sugar is ok. Don't know what the issue is?

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I'm in the uk, had a need to pee problem and was referred to a bladder clinic, where I got checked out, no physical problems apart from trace blood in urine so had a cystoscopy to check all ok. They lent me a TENS machine for a bit to put on some points around my ankle, which helped. They seem to me to be similar to acupuncture points so that might be something to consider. They referred me to acupuncture on the NHS via a physiotherapist. I've had a lot of paid for myself accupuncture both TCM (traditional chinese, which did not suit me) and 5 element which is much better for me. Anyway the physio acupuncture hurt like hell and made me feel awful, so gave that a miss.

So back to self care! What I have noticed though is that sugar makes me unwell (not diabetic) flares a lot of my symptoms, especially the need to pee. I have been sugar free for 3 months now, except a small Christmas blip and it definitely helps my health overall and increases the time between gotta go and oh no for me. The bladder clinic also recommended giving up caffeine/coffee and tea, not done that, lost too many of life's pleasures! but I do minimise intake.

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Thank you for the information.

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