Frequent Urination

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ebet24
Regular Member


Date Joined Jan 2010
Total Posts : 42
   Posted 9/2/2010 7:01 PM (GMT -7)   
I was diagnosed with Lupus almost a year ago. My symptoms were pretty mild, mostly fatigue and joint pain, and my Rheumatologist put me on Plaquenil and I have been almost symptom free for the last 4 months. But during this last year, even before I was put on Plaquenil, frequent urination has turned into a huge problem. I go to the bathroom easily 30 times a day. It makes work, school, even just being in the car almost unbearable. It doesn't hurt when I pee or anything, it's completely normal except for the fact that I go several times an hour. I mentioned this to my rheumy on Monday when I saw him and he said it wasn't Lupus related and I needed to talk to another doctor about it. But after doing my own research, I've found a lot about interstitial cystitis in Lupus patients and I'm wondering if that's a possibility. Has anyone else had this problem? What other kind of doctor can I go to to take care of this?

jdrea
Regular Member


Date Joined Aug 2010
Total Posts : 124
   Posted 9/2/2010 8:11 PM (GMT -7)   
Wow I am glad that I am not the only one. My dr couldn't explain it but says that all kinds of things can happen with autoimmune diseases. My eye dr said that it was a sign of MS. Don't freak out, I have optic neuritis and heat sensitivity and several other MS like symptoms. None of which have been enough to dx MS for sure. Fingers crossed it is just some crazy Lupus symptom and maybe it is something that will go away. I go 30 to 40 times in every 24 hour span. I have no advice about how to control it. Nothing is working for me. I wish you luck and if you figure out a way to stop it pls share. I will add you in my prayers.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 5843
   Posted 9/2/2010 8:30 PM (GMT -7)   
Please see a urologist. From my sister-in-law, who is one, it seems this is not unusual and that there are some fairly simple methods to control it.

Hope it gets better soon -- that would make me very very annoyed!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

sonyalee
Regular Member


Date Joined Sep 2010
Total Posts : 51
   Posted 9/2/2010 10:34 PM (GMT -7)   
I do this everyday but the worse time for me is at night. I have to go atleast 7 to 10 times before i can go to sleep. it's really a pain. I haven't mentioned it to the dr. I thought it was just me.

Dinosaur
Regular Member


Date Joined Jan 2010
Total Posts : 25
   Posted 9/3/2010 3:35 PM (GMT -7)   
Frequent urination is a symptom of many other conditions, including diabetes. It's really best that you go to a doctor for this one, it could be anything. It's definitely not normal, so don't put it off for too long. :-)
22/F/FL

jdrea
Regular Member


Date Joined Aug 2010
Total Posts : 124
   Posted 9/3/2010 8:23 PM (GMT -7)   
I will talk to my dr about it next Tuesday and let you all know what I find out. I am in so much pain that I try to stay as still as possible. My husband jokes that my 30 or 40 trips to the bathroom is my daily exercise. It has really lost its amusement now but it I guess that it serves that purpose. By the way, I am not diabetic. So talk to you Tuesday.

ebet24
Regular Member


Date Joined Jan 2010
Total Posts : 42
   Posted 9/3/2010 9:26 PM (GMT -7)   
Good luck at your doctors appointment jdrea. Thanks for the replies-I've got a gynecologist appt in the next month so I guess I can ask her? I'm surprised my rheumy won't handle this problem, I think of him as my primary care doc so it's weird to me that he isn't taking this problem too seriously. He seems to think as long as my blood work is fine and pain is under control then his job is done.

louise47
Regular Member


Date Joined Feb 2010
Total Posts : 138
   Posted 9/4/2010 3:37 AM (GMT -7)   
.
 I have the same problem. not as much I don't think. I stopped drinking coffee in the evenings but I still have to pee at least 4 times during the night. usually at least once an hour
   Good luck at the doctor

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1434
   Posted 9/4/2010 6:49 AM (GMT -7)   
for all of you that have to pee excessivly at night? (only at night) have you had your kidneys checked? Frequent urination at night is a sign your kidneys are leaking protein! That was one of my first symptoms. Also it your urine is foamy or what you could call a tea color! If you haven't had them checked since the frequent night trips than please get them checked asap! The sooner any problem is caught, the better!
Amy
Kidney Diseases & Disorders and Lupus Moderater
Cyclosporine, Prednisone, Lisinopril, Integra Plus, Vitamin D 50,000 units
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram, Darvocet, Zofran

If God brings you to it, he will get you through it!!

jdrea
Regular Member


Date Joined Aug 2010
Total Posts : 124
   Posted 9/7/2010 8:05 AM (GMT -7)   
Thanks for the tip Amy.. My trips are all hours but I will make sure I watch out of anything like what you described.
Thanks everyone for the wishes of luck today. I am so afraid that I will need all the luck that I can get. Talk to you all this evening, if I make it home...

jdrea
Regular Member


Date Joined Aug 2010
Total Posts : 124
   Posted 9/7/2010 7:21 PM (GMT -7)   
Sorry I didn't get an answer from my dr today. He told me today that even though my ANA is 1:320 and speckled he feels that I am more likely to have MS than I am to have Lupus. I am so confused..... and still confused as to why I, we, go to the bathroom so much...... I wil start a new thread if I ever get an answer for this problem.......

ebet24
Regular Member


Date Joined Jan 2010
Total Posts : 42
   Posted 9/7/2010 8:12 PM (GMT -7)   
Good luck jdrea. I've got several more doctors appointments this month and I plan on bugging the crap out of all of them for an answer!

kimberlyrenee
Regular Member


Date Joined Aug 2009
Total Posts : 43
   Posted 9/15/2010 10:42 PM (GMT -7)   
I have this same issue... does it have to be a bad thing, though? Could it just be how some people are normally?

Another idea: do any of you that have this issue also have Sjogren's? I feel like because of this syndrome, I drink a lot of liquids which causes more frequent urination.
23 years old. SLE, Sjogren's, Raynaud's, discoid and pernio lupus

plaquenil (400mg), prednisone (10mg), pentoxifylline (400mg), methotrexate (7cc injection/week), folic acid (2mg), lexapro (20mg), zolpidem (10mg), topimax

supplements: iron, vitamins D and C, omega-3, biotin, green tea

sonyalee
Regular Member


Date Joined Sep 2010
Total Posts : 51
   Posted 9/17/2010 1:08 PM (GMT -7)   
aimsgirl16 Thank you for your input. I didn't think that is was anything to even mention to the dr. Just an aggrivation for me. After reading your post i will make sure to mention it to the dr. next week. Thank you all for answering these questions that are posted or just replying to issues. You have no idea how much it helps us who haven't had that particular issue. I wish I had found this site 5 yrs ago. Thank you soo much for taking your time to talk here. It really means alot to me. You have all been a huge blessing to me.

kat10
Regular Member


Date Joined Aug 2010
Total Posts : 112
   Posted 9/19/2010 1:47 PM (GMT -7)   
I am so glad I found this post because I am going through the same thing, my Rhumy brushed it off as did my primary. I am not kidding when I say if I go to bed at 11:00 I will get up 8 times befor 12 just to pee, I feel like I have completly emptied my bladder and 2 mins later I am back in the bathroom like I never went. To me this is not normal and I wish My doctors would take me seriously. maybe the next time at his office I should pee myself, maybe then he will take me seriously. probably not thought I would just have to drive home in my pee pee pants and be even more upset.

ebet24
Regular Member


Date Joined Jan 2010
Total Posts : 42
   Posted 9/19/2010 4:22 PM (GMT -7)   
I'm sorry kat10, this really sucks. All my urine and blood tests came back completely normal, so I'm so glad it's not my kidneys, but what is it? I'm going to ask my gyno next week, but I'm sure she is just going to shrug this problem off too. My rheumy said I just have small bladder, but this is something that has just started within the last year, and I had no problems at all with frequent peeing in high school or college. It's definitely affecting my quality of life, so hopefully I will get an answer.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 5843
   Posted 9/19/2010 8:27 PM (GMT -7)   
Doctors ignoring it???

See a urologist!!!! The rest of the docs don't have any training in this area at all! Better yet, see a female urologist!!!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

kat10
Regular Member


Date Joined Aug 2010
Total Posts : 112
   Posted 9/20/2010 4:35 PM (GMT -7)   
Ebet24 I am sorry and I know how frustrating it can be, it really does effect the quality of youre life its hard to do anything, or plan anything outdoors allways worring if there is a bathroom close by. Let me know if you make any progress on this and I will do the same. Thanks Lynnwood I will aks my doctor to send me to one Unfortunetly I need a refferal for that and if he does not think I need to go he wont send me (I am looking for another doctor by the way) One who WILL take me seriously. why are they so hard to find?

Kat10 :)

ebet24
Regular Member


Date Joined Jan 2010
Total Posts : 42
   Posted 10/15/2010 11:09 AM (GMT -7)   
So I had a gynecologist appt today and she was way more helpful than my rheumy! First of all, she referred me to a different rheumy, saying that she knows a lot of patients who have gone to the one I'm currently going to and have been unhappy with him, plus she didn't like how he shrugged off my frequent urination. She is going to research links between lupus and plaquenil and frequent urination, and she said even if she doesn't find anything, that doesn't mean that that still isn't the reason behind my bladder problems. She gave me a list of common foods and drinks that irritate the bladder, and wants me to keep a pee diary (lol) over the next few weeks to see if there are any triggers I notice.

Also, she told me the worst thing I can do is go to the bathroom just because I see one nearby. It's really tempting for me to use any bathroom I see, even if I don't have to go that bad yet, just because I know I will have to use it in a few minutes anyway. She said that is the worst thing I can be doing, and instead I should be trying to hold off going to the bathroom, even if it's just for 10 or 15 minutes. She said that helps build up the bladder muscles and will keep me from having to go to the bathroom so frequently.

She also said it may be tempting to cut back liquids, but that's also a bad idea. Lots of fluids are good for the kidneys, especially with lupus. Cutting back liquids can even make the frequent urination worse. I'm going back to see her in a month, and if none of these things work we will start looking into overactive bladder meds. Hope this was helpful to some of you!!!

Post Edited (ebet24) : 10/15/2010 11:12:25 AM (GMT-6)


Jeramie50
New Member


Date Joined Oct 2011
Total Posts : 1
   Posted 10/4/2011 12:01 PM (GMT -7)   
I have had lupus for 40 years and live on prednisone. Now I have RA and am on Humira and methotrexate. i have had Sjogren's for about 30 years since my second child was born. I, too, am having this night mare problem of going to the bathroom all night long. No sooner do I get back in bed, I have to go again. I am on my way to the doctor right now, but really can't afford expensive test. When I was first diagnosed with lupus I suffered severely from hemmoraghic cycstitis. Such a nightmare. Sex would literally make me very ill. I finally started getting peritonitis for no reason and was finally diagnosed with lupus. I will report back here if I find anything out. I am afraid that all the damage to my bladder in my 20's could lead to something really nasty now I am 63.

sickinterval
Regular Member


Date Joined Sep 2011
Total Posts : 33
   Posted 10/4/2011 2:18 PM (GMT -7)   
Does anyone know what normal is? I wake up at night at least four times. I have to go at least once every two hours.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 5843
   Posted 10/4/2011 4:11 PM (GMT -7)   
Everyone should be able to sleep 8 hours without waking.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1434
   Posted 10/4/2011 4:43 PM (GMT -7)   
sickinterval...how often have you been waking up at least 4 times a night? Have you had blood work done since you have started waking up frequently at night to urinate?
Amy
Lupus Moderater
Cytoxan, Orencia, Septra, Prednisone, carvedilol, heparin, Eliphos, toresmide, sodium bicarbonate, Vit D 50000 IU weekly
PRN: Ativan, zofran, hydrocodone, Ambien or Ambien CR, Flexeril, Ultram,

If God brings you to it, he will get you through it!!

sickinterval
Regular Member


Date Joined Sep 2011
Total Posts : 33
   Posted 10/4/2011 5:31 PM (GMT -7)   
I have been waking up four times a night for about a year. (same time flare started) Had many kidney and urine checks so far it all looks good. I thought it was just a middle aged thing. I will be brining it up with my dr on my next visit.

I would love to sleep 8 hrs straight.

shoeless
Regular Member


Date Joined Dec 2009
Total Posts : 130
   Posted 10/6/2011 10:49 AM (GMT -7)   
yeah,I too,have a very active bladder.I can go 6 times in a nite,try to stay away from coffee as I dont need a diuretic.Sometimes its ok,but other times its embarrassing.If Im at someones home and drink a coffee,especially perked,Im on the toilet all the time Im there.They say "you gotta go agin?".I thought I was just imagining it,that it was just happening to me.And it always is when I dont feel that great to begin with.Then sometimes I just feel like I have to go,and dont.What a weird thing eh?I will be sure to ask my rhumy ..its not till december but ...I will ask.
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