frequent urination

[lizk]

Hello everyone,

I saw my rheumy yesterday and mentioned to her that I'm often up 3-4 times a night to urinate. Each time I go, my bladder is really full and it's a significant amount of urine. There's no way I could ignore it and go back to sleep. She wants me to see a urologist to get checked for interstitial cystitis. From what I've read about IC, it seems to be a very painful condition! I have no pain/bloating/no UTI-ish feeling. I've had UTI's a few times in my life, so I definitely know when I have one.
Since I was a kid I'd wake up at least once a night to urinate. The past few years it's become more frequent. If I have caffeine or water, I definitely urinate a LOT.  I take Evoxac and know that this can increase urination as well. I also stop drinking water before bed time and am amazed by the amount of output despite this.
Does anyone have any advice/experience with this? Part of me struggles to think this is IC because of the amount of urine when I pee and the lack of pain.
Oh, and I had a urinalysis recently and everything was ok.
Thanks,
Liz

[ohiolady]

Hi! I was going to say it's a side effect of a Evoxac. 

Anna

[Joe S.]

It could relate to your blood sugars.

[SunshineDaydream]

Doesn't sound like IC to me. Are you drinking a lot to try to help with dry mouth thus leading to urinating more? Other than that, frequent urination makes me think diabetes.

[cccourt1942]

Liz:  don't know how old you are, nor when you were dxed w' SjS.  I was dxed nearly 5 years ago.  And...I'm 75.  In the 5 to 6 years prior to dx, I was up all night going to the bathroom as I was drinking copious amounts of water---due to Sjogren's.  Once I was medicated, I continued to urinate all night long---it took me over a year to reach the level of meds to maintain a comfortable oral cavity.  So here I am...several years into enough meds to be comfortable, and I STILL get up 2 to 3 times per night.  Sometimes I think it's gotten to be habit.  But JUST as you describe, not only do I go to the bathroom in the night, I urinate a LOT.  I take a med about 4 in the afternoon as it requires 8 ounces of fluid when taken.  That is the LAST large amount of anything I drink.   I go to sleep between 10:00 and 11:00....and when I get up the first time, you 'd think I was emptying a quart! 

It's sjogren's.  And for me?  Old age, weak bladder!  It isn't nearly as weak as I thought it was before dx when I was consuming so much water I could barely go 1/2 hour after drinking as much as a liter of water at a time! 

I don't think any doctor believes how much i urinate at night for the amount of fluid I take in presently.  But i do.  Also,  the topic of all night urination comes up frequently at our Sjogren's group get togethers.  We always have newbies who ask.  AND...without exception, we all reply YES!

Not a welcome answer---except to say you adjust to going back to sleep!
ccc

[jazzlover]

Might be IC .. but doesn't really sound like it. When I was dxd in 1992, I was in severe pain. It went on and on for years.

I'm not really sure what helped it the most, but I did follow the IC diet and was also later treated for Lyme and babesia.

I'm much better now, but when my mast cell issue kicks up, I pee like a fiend. I no longer have the terrible pain. I'm also on a mast cell stabilizer and it helps.

If you don't have IC .. then perhaps  you need to see an endocrinologist. They can check all of your hormones. I think aldosterone affects urine output.

[lizk]

Hi everyone,

Thank you so much for taking the time to respond! I'm really grateful.

I'm currently 36 and was diagnosed with primary Sj at age 29. I also have Raynaud's. Antibodies for celiac showed up recently, so I'll be getting an endoscopy in 2 weeks.

From what I've read on here, it seems like IC sufferers are in so much pain, whereas I'm just not having those symptoms. I do drink a lot of water--I'm dry as heck and guzzle water! I've cut back dramatically on caffeine (just 1 coffee in the morning) and I cannot drink tea past 8pm because then I will be up all night heading to the toilet!

I did have a high mast cell count around the time I was diagnosed at age 29. I would have horrible GI symptoms and a fever. I did a bone marrow biopsy and at least the mast cells weren't in my marrow. I haven't had mast cell issues for the past few years--unless mast cells can affect your bladder?? Any additional insight on mast cell issues would be REALLY helpful. I haven't looked into that in awhile for myself but I know it's showed up before.

I was tested for diabetes back last October and that was negative thankfully.

Hearts and hugs to all of you for getting back to me.

All the best,

Liz

[jazzlover]

YES, MAST CELLS CAN AFFECT YOUR BLADDER.

Have you changed your diet any? Eating more foods that are high in histamine, more chocolate (Valentine's), more leftovers than usual, etc.

Google low histamine diet.

Sounds like you were tested for Mastocytosis and the biopsy was negative. Many of us have Mast Cell Activation Syndrome. All the same symptoms but a negative biopsy.

I also have Raynaud's.

[lizk]

Hi jazzlover,

Thank you SO MUCH for giving me information about this. I'm so grateful! I will look into the low histamine diet and give it shot. Hopefully it will make a difference.

I will also look more into the Mast Cell Activation Syndrome.

I appreciate your wisdom, but I do wish you didn't have to suffer with all these conditions!

Liz

[jazzlover]

I'm so happy to be able to help you!!

There are several FB groups too .. so check those out. Tons of information there.