So I’ve had this frustrating constant and urgent need to go to the toilet since December. In September I developed a urine infection which was on and off for 3 months until I was finally diagnosed with Lupus.
But now I get no pain when passing urine but it’s still urgent and constant. It’s like randomly I need to go toilet there’s no warning signs and I have to go then and there.
It’s worst at night I literally and I’m not even exaggerating go to the toilet twice an hour every night.
I spend my nights doing 2 things. One is trying to get to sleep and two is running/falling down the stairs to the bathroom to use the toilet.
Once again my GP said it’s nothing to worry about because there is no pain so it’s not an infection and my consultants don’t seem bothered by it either because there’s no pain but I know this is not normal right ?
My renal consultant said my kidney function is normal so I’m just confused.
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GraceXNichole
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I had the same problem. Plaquenil really improved the high urine frequency. It didn’t completely fix the problem, but it sure did improve it. I’ve heard others discussing the same thing on this site. I forgot who seemed to accurately describe it, but it seemed as though it had something to do with the inflammation of the vessels related to the kidneys
A number of years ago I had this and it was lupus inflammation related. I ended up having a procedure where i believe they inflated the bladder? I didn’t expect it would work but it DID. They said it might have to be repeated but I’ve never had the issue again. Knock on wood. I wish i could remember more but definitely look into it further.
Interstitial Cystitis (also known as Chronic Cystitis, or IC) is super common with us lupies. Is say at least 15% of the women in my FB group have been diagnosed with it. The most annoying symptom is frequent & urgent need to urinate that gets substantially worse at night. If you are finding that you are hardly peeing at all once you are on the toilet, I would suspect this might be your problem even more. That being said, I also have a substantially increased urine output whenever some of my lupus symptoms are worse. I'll puff up all over the place (joints, hands, face, eyes, feet, even scalp sometimes) & then I'll pee like crazy amounts. My theory there is that my body is just trying to get rid of fluids in a desperate attempt to decrease the swelling. Anyway, it might be worth mentioning IC the next time you see a doctor.
Im suppose to have mild lupus, but not on any meds at the moment, and all is well...BUT...do you have a thyroid issue at all? I can pee on demand, I swear!!!! I get up in the morning and of course i pee, then 10 minutes later can pee again (and big amounts)...and maybe 20 minutes later again...Im not certain but seem to happen around when my thyroid pooped out, and peri menopause time...BUT years later its still the same situation. I once went to see a specialist and he said, "Over sized bladder and risidual urine"...My friend has same thing and went to same doctor, he told her "Hormones do this"...I heard that when u have thyroid issues it can make your muscles behave differently, and might cause it. Im only taking Synthroid and thats all...Its a major puzzle..Oh ya, Im hypothyroid...I have the weight thing under control almost..after many many years..
So sympathise with you as I’ve had about 5 urine infections in the last 4 months was also told I had an overactive bladder...google this as this info may be helpful for you.
For the Urine infections I’m now on Hiprex prescription from doc. D-Mannose tablets, cranberry tablets from the health shop, take cranberry juice and lots of water, also trying to stay off fizzy drinks and wine as they can irritate the bladder.
Hope this info helps you, as it’s a horrible feeling when you get the urgent urge to wee....
Hi GraceXNichole, hope your feeling well just now. Sorry to hear about your problems with toilet issues. My lupus came back with avengence coming on 2 years now and I started going through a long spell of getting up during the night every night sometimes twice a night for the toilet. My consultant said it was all kidney related as my kidneys got hit big time on this occasion. I'm no doctor and not going to pretend I know what I'm talking about as I understand what I need to understand and take my consultants advice and trust them fully as they are very very good. I would ask your renal consultant again just to be sure. Hope this helps
Hi Grace, same with me. I go twice every hour throughout the night. I also suffer restless legs for years. I don’t know if there is a link with RLS but my urgency to go gets worse when I lie down 🤷♀️ Ask to be referred to a urologist. I was offered Botox but declined. I’m thinking of asking for it now, only I’ll lie upside down when he goes to give me it😂 freebie x
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Constant uti's
The lack of bladder control and the need to wee update 
Hi all, new here & advice needed please
Advice needed with Diagnosis
