OK so urinating a lot was not a big problem before lupus but I can say for the past months maybe since September last year I have been wondering if I should pack the toilet wherever I go.
I don't drink a lot of drink since this started iv tried to limit drink to 2 classes a day in the day time if I'm bored worried or nervous my need to urinate would be high I would have urge to go more however on the nighttime I get even worse I can go more than 5-8 times getting up about 5 minutes after the last wee its annoying now my doctor has considered diabetes but no close members of the family have it nor am I obese I weigh 9.8 stone waist size is 27 and height is 5.5 and I don't have a lot of sugar I like sweets and can eat sweets but that's about it really don't slobber 5 sugars in TeA or coffee (hate both) I do get tired but with lupus you do anyway. I haven't lost weight I've maintained the same weight but I can get quite thirsty but am able to resist a drink because of the wee problem I don't drink alcohol or smoke by the way please help I'm at a loss as everyone complains to me and I'm sick of the toilet being my new home please please please any suggestions would be helpful thank you for reading my long story
Danielle
P.S. nothing shows in my urine test am having blood sugar tests though
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Danielle2419
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Have you asked your rheumatologist about lupus cystitis (or interstitial cystitis)? It could be what causes your frequent urination. Do you get pelvic pain?
Ask to have your cortisol levels tested, I have now been diagnosed with secondary adrenal insufficiency and one of my symptoms when my cortisol is low is frequent urination which is kind of uncomfortable.
I’ve also been diagnosed with secondary Addison’s. At times I also urinate continually, i didn’t realise it could be related to cortisol, I’m learning all the time!
Hi, you really need to drink a lot of water and non caffeine drinks daily you should be having more than two glasses of fluids a day no matter what.
I sometimes get this problem but it usually starts just before bedtime and quite a few of the times it's a urine infection (for me ). I can usually go all day without going to the toilet no matter how much fluids I have had but as night falls it's every few minutes for the toilet.
Hope your doctor will be able to help so please go to your GP ASAP. xx
Hi. Ditto other comments - to back to your GP and speak to your rheumatologist asap to ensure nothing is amiss. That said, I have experienced similar to you - I get episodes, which can last weeks or even months, of having to wee far more frequently than should be the case - and not due to an infection or diabetes, etc. I can relate to Maureenpearl - it is often at night when things go really haywire. I've often wondered if it's connected to my central nervous system as my over frequent urination seems to go hand in hand with the same cluster of systems - sleep onset difficulties, itching, plus others. In any case, as Maureenpearl says, you do need to drink more whilst this is being investigated - or you will end up with a urinal tract infection! (I speak from unpleasant experience!)
Metoyou...this is where my problem started. I have always urinated a lot, but it got to the point where I couldn't urinate at all, but had the urge. Or hardly much would come out... Do you have a healty pee? Or is it a little?
I have had constant UTI's which is what caused some kidney scarring according to my doctor. I have a constant bacterial infection. Will not go on anti biotics for this because I won't! I have been taking a cranberry supplement daily, and my infections have decreased or gone away. I am still getting up to pee in the middle of the night. I think that just comes with age for most. I don't have the kidney pain in my back anymore either. And I am also taking an enzyme for digestion which seems to be helping me to have healthier pee's... Keep drinking lots of water to flush out germs.
Hi metoyou, I have followed this thread with interest as I too,need to go often. However, I do drink a lot of tea, and blamed it on the diuretic nature of caffeine. If I am out all day and not had my usual quota, I am still the same. For other symptoms, I am advised to get tested for diabetes. Reading these replies, it seems it too, could be suggestive of diabetes.( I'm not saying you have this, by the way.) like you, I don't suffer with, UTI probs, but my urine tests often show blood. Up til now, my renal function has been ok, I have liver probs though. On a very personal note, I wonder if you or anyone else, suffer with stained underwear through urine !!! Can't believe I've said it, but there you go. By the way, I'm not incontinent...lol... My urine is very brown and I blame it on the meds. I'm not on strong meds now and thought it would go. The constant loo trips are worse at night for me, and I too need to go again, 5 minutes later. Apart from boring you with my problems, the only advice I can give is, get on line and buy a, SHE WEE, for outdoor use. !!!! Think I might get googling now...lol... Seriously, I do sympathise and hope you share my sense of humour.
v brown urine - unless you drink a lot of coffee all the time, colour should be pale yellow despite the medication you're taking. Try drinking only water or herbal teas for a day and see how your urine is at the end of the day. If it is still brown, go see a urologist.
I too have been going more than normal, my friend has noticed it to, it does get worse at night, ive found that I have to get up through the night if I try not to it does hurt a bit,
Hi me to you, can i ask when you wee is it slow or fast, and do u go alot or just a little...and i had this problem..i was going offen a slow flow, going all the time.. I had a little operation to widen the water work piping so that my bladder could fill and empty fully. Does this sound similar i had to wee in a special toilet and my flow was very slow and always wanted to go but didnt go alot x
They widen the pipe by stretching it and my god it really helped, its not a painfull opp and very straightforward, this may be worth while, something the bladder doesnt empty fully, and old wee sits in the bladder to then cause bacteria and infection, cauising utis etc, if your flow is slow, but neec to go often maybe its worth u asking your gp about this i had it done 5yrs ago and only now the effects are wearing off been as its a stretch they do after a few yrs its goes bk and needs redoing x
Hi willowwag, my mum has this problem caused by an extra 'pocket' in her bladder. Surgery is complicated and after continually refusing to try, self catheterisation, she finally conceded. She is completely well now with no probs. It is a very small device that takes a few minutes to do.she does it morning and night and wishes she had done it sooner.
Hello everyone thanks for your reply when I go I do tend to wee a long one more or less when I drink it almost seems to go right through me It take between 10-15 min and I'm back in the toilet again I can actually hold it for a long time if I'm bursting although its uncomfortable but that is for everyone however the point is I go far to often and in my eyes the past days have got worse and worse and the doctor suspects diabetes
Hi metoyou, despite my cheeky banter on here, I do sympathise as this is far beyond reasonable for you. Your reply still interests me as, although I am not as bad as you, I have had reason to suspect diabetes for myself. Not for these problems, I didn't think they were related. I have some of the usual suspects for diabetes, and this is just another one. Perhaps we should see a urologist as purpletop advised, and start eliminating a few things. I was going to call my surgery today, but am so fed up with all these medical appts. What is your dr waiting for if he suspects diabetes ? I am seriously thinking of buying a home tester kit, to monitor my blood sugars. Maybe then I will sort it out with GP, if I have fluctuating results. As happens often on this site, someone asks for help, and the replies are all about theirselves, forgetting to help the postee. Yes I am guilty of it too, so I'm sorry I couldn't help, but I do hope you are sorted soon, as it sounds awful.
Tonight my mum says try not to think about weeing so I occupied myself and I lasted an hour I then had a drink and I still managed to hold it again for another hour I don't no what it could be but an average perosn should hold it longer. but still i would like to know what sort of problem I have I'm going to await results of blood test, but I cant go on like this I am due to go on a journey to Southall from central London its about an hour and half journey possibly I don't want to keep bothering to go loo all the time plus we go motorway hardly a place to wee I can't even go on long journeys Because of this before lupus I did wee a lot but it wasn't so bad then over time it gradually worsened where people noticed this problem and then the past couple of days its suddenly become unbearable I don't wet myself and can hold it but its just the urge to go and how uncomfortable Ur becomes to hold it plus if you know you want to go then I just have to go at that point
I have an inflamed bladder and pyelonephritis along with lupus. I've had a bladder stretch twice which has helped as the bladder can become over sensitivee and shrink. Best wishes x
Hi. I'm not a medic but I do get UTI's a lot. It sounds like a bit of a problem thats restricting your life a lot. As a fellow cystitis sufferer, I know that the less I drink the worse the cystits is, this is true of most things like this as the tube from the bladder gets dry and sore which makes the wanting to go to the loo worse. The kidneys also need fluid to keep healthy and I find that the more I can drink the better I feel. Do get proper advice as soon as possible as it may be something easy to sort out. Has your sent a urine test off to the lab or done a simple dip test on a sample of urine you take with you? I get UTI's quite a bit and have to do this, the GP gives me antibiotics if its positive and sends another sample off to the lab as sometimes an infection dosn't respond to the first antibiotic and the lab can tell the doc the best one to use. Good Luck!
Hi Don't let this go on. Apart from being bad for you, its spoiling your life! GP appointment.is the only way, but drinking plenty isn't going to make it worse. Reading all the replies, your not alone. My Mum had it too!
I have had urine test with dipstick and nothing shows its also being sent of to the lab for kidney function I'm also having blood checks to test for blood sugar and kidney function again apart from that nothing shows I'm yet to await blood results as you say I should still carry on drinking but doesn't that just make you wee more I find its does abit can you recommend any kind of drink I'm prone to sugary fizzy drinks but think I should steer clear if there is possibility of being diabetic I'm just abit cautious so can you tell me a drink I can have in the mean time even if its water
Hi, I'm sorry, I didn't mean to go on about seeing the doctor. You're right, if theirs a chance that you have diabetes, sweet things are not a good idea. Also, you can get low sugar squash, which doesn't have an artificial sweetener in it, as with Lupus plus medications you may have they might not be good. Personally I like just plain fizzy water - not the expensive ones as I drink it all the time and find the supermarket's own taste the same to me and price difference is huge. By saying drink a lot, I don't mean a huge amount, just a normal amount, I think, but you can look it up, it should be about 8 glasses a day, but that includes everything you have, its on the NHS web.. The reason drink helps stopping you weeing a lot is that the urine tract going to the bladder is kept moist, if this is dry it can become sore and cause an infection and pain on weeing, I've had blood before now, As you've got lupus I'm sure your GP will want to get to the bottom of this and find a solution.
If its diabetes, you need to drink as this helps keep blood sugars normal, but you'r right about the sugar. A blood test can tell the doctor this. My husband is diabetic and has to have blood every month at the moment. He didn't have any symptoms of diabetes, not over weight, or tired,no increased thirst of urination, just a chest infection that didn't go, so the GP ran tests and found mild diabetes. It was a shock! I won't go on any longer I'll bore you to death!
Kidney problems are very common when you have lupus so you should be following this up with the doctors.
When you said you only drink 2 glasses a day did you mean alcohol or fluids in general?
If you are only drinking 2 glass of liquid per day you could get dehydrated. It is not great news for your kidneys to drink so little. It makes them work too hard, which is not good for those of us with lupus.
If you had your urine tested and nothing showed up you could still have a cystitis -type problem, which will make you need to wee all the time. Your doctor needs to know about this.
In any case avoid caffeine and alcohol as these can irritate the bladder.
You can have water, herbal tea, ordinary tea (but not too much of it and keep it weak), diluted juice, milk, or dairy substitutes. Don't overdo the fluids either because that can also put a strain on your kidneys.
The 2 organs which control how much you wee are the kidneys and the bladder. If nothing shows up on your kidneys and doc rules out cystitis you can get a referral to urology. They can do a test looking into your bladder.
Hi, It's not normal for you to go to the toilet so much, but at least the doctor seems to be doing the tests that might help you find the reason. This is something I'm sure your GP will refer you if no reason shows up, especially as you have Lupus. It's not good waiting for results and if they still can't find a reason, your GP can refer you to a specialist urologist, who will want to find the reason. Do keep on at the doctor and don't let things go on, but it sounds as if he intends to find an answer and solution for you. I can tell that you are anxious, which is natural, but it will only make the problem worse if you can't relax a bit. I know I always need to wee a lot if I'm nervous! Take care..
Hi has your doctor considered an overactive bladder, I was having same problem (I Have CML) my doctor asked me to fill in a chart and I am now on meds for overactive bladder and got a new lease of life (without the toilet lol)
Hi, what an interesting conversation.... I myself suffer from lupus, adrenal insufficiency (cortisol issues) and have recently after a lot of pain and bouts of what were considered UTI's, interstitial cystitis. It has taken 10 years for me to get this diagnosis and only after dissolving into tears at the surgery when I felt that life was too difficult with the constant pain.
I had done my own research and tried anti histamine which did make quite a difference to the pain and this helped to persuade the GP that I needed further investigation... and as a result I am now officially diagnosed with IC and have appropriate medication... ranatidine (an antacid) and vesicare...
Persist with the GP, don't suffer in silence, bladder pain is miserable.
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