Can't stop going!!: I have to start this by saying... - LUPUS UK

LUPUS UK

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Can't stop going!!

katidid profile image
8 Replies

I have to start this by saying I'm a person who has always had to pee a lot more than most. It's been going on so long it's a widespread joke among my friends and family. It's never really changed until the last few weeks and especially in the last few days.

To be blunt: I'm always peeing. Doesn't matter how much I do or don't drink - although even small amounts of liquid seem to cause a disproportionate amount of urination.

This past week I started to have pain in my lower left back. It comes and goes but did get better with water.

But the peeing is getting worse. I’ve been to the toilet 17 times and I haven’t been awake for more than 12 hours!

It’s much worse at night, especially when I lay down. It not uncommon for me to get up 3-5 times between laying down to sleep and falling asleep. Then I wake up at least twice in the night to pee again.

There is no burning, so this isn’t a UTI. I had the when I was younger and this feels nothing like that.

I do suffer from edema in my lower extremities and wrists, tigers and hands. Although with all the peeing you’d think that would go away!

I’m getting concerned about my bladder and my kidneys. Thankfully, all tests have been normal to date. But, I can’t keep going through a triple roll of toilet paper a day!

I’m afraid to go to urgent care or call my Rheumy. I’m finally up and about and I don’t want another thing to go wrong.

Is there anything I can take to control this? Would appreciate any advice.

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katidid profile image
katidid
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8 Replies
Doreen1199 profile image
Doreen1199

It sounds to me that you have interstitial cystitis a autoimmune disease of the bladder....please believe me and see a specialist if there's any thing I know is that I've had ic for years and your symptoms are many of the same as mine. There's also along w ic a thing called nocturnal urination a result of ic which causes us to urinate a lot more when laying sleeping at night!! So please take my advice and be checked for this ic disease and it's not difficult to diagnose if you see a bladder specialist they go inside your bladder n can tell by looking BC we have no inner lining inside like were supposed to!! Please let me know BC I truly hope I've helped you n a lot of people n DR's don't know a lot if anything about IC....GOOD LUCK N GOD BLESS YOU SINCERELY YOURS, Doreen Harner <3

katidid profile image
katidid in reply to Doreen1199

I sent the hubby out last night to get a home UTI test. Highly positive for Leukocytes and negative for nitrates. From my reading that means infection or inflammation in upper or lower UT and to check the bladder and kidneys. So, thanks for your response. I will definitely get my bladder checked, especially since I’ve been having this on and off for so many years!

Curly1430 profile image
Curly1430 in reply to katidid

Get to docs you need antibiotics by sounds of it and quick x

PMRpro profile image
PMRpro

Are you also thirsty and drinking a lot? The most common cause of polyuria is diabetes - and that must be checked by doctors. Go to your PCP, doesn't have to be the rheumy.

What are you afraid to go to urgent care? If you have something seeing a doctor changes nothing - except whatever it is can be identified and treated.

katidid profile image
katidid in reply to PMRpro

I’m normal thirsty for our weather and my activity. My PCP is good and always checks my blood sugar and any possible signs of diabetes or pre diabetes. I actually run on the other end. I tend to be hypoglycemic

Treetop33 profile image
Treetop33

Definitely get checked out by the docs. I had this for years, and then when I was giving birth I was catheterised and had 4 days of IV antibiotics. I don't know which one worked but after that I was back to normal. I didn't have any other symptoms of cystitis.

Now with the Lupus I'm back to weeing a lot at night, but nowhere near where I was at my worst.

katidid profile image
katidid

Thanks all. Will call the doc ASAP and see if I can get a referral to a UT specialist.

Lisalou19 profile image
Lisalou19

I am undiagnosed at this time, but I can relate to this post. I non stop need the toilet to the point everyone around me makes comments

When I am in a flare up my need to wee is more persistent and some times I get very minimal warning that I need to go!!!! It’s almost like my muscles go to sleep during a flare

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