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Old 02-17-2011, 09:45 PM   #1
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Lupus and Incontinence?

Hello,
I have posted on here once before and was very pleased with the support and suggestions that was given.I was dx with SLE... now I'm waiting to see my new rheumi in April before updating my last post. So I have been dealing with another problem of mine that is on going... and not easy to talk openly about, but here goes. Is urinary incontinence linked to lupus? And is this something that a urologist would know or would the just think it's just "incontinence"? I had a bladder tack and hysterectomy in Jan 2010, but no relief and it was getting a lot worse! Then I had the bladder sling done Dec 2010. It seemed to work at first, but then I started to leak a bit here and there. Now 2 months later it's still better than it was before the sling, but I still leak and now it's every day. I leak a little when I stand up, or I can be doing the dishes and suddenly feel that I have leaked. It doesn't really matter what I do I will leak.We have ruled out infection so I'm going back to see my urologist on Monday. But I was just wondering if Lupus could be linked in some way? And if so what can be done to help correct it? And thank you to everyone who helped put this message board together. It helps people like my-self just to know that others out there going threw similar struggles in life.

 
Old 02-22-2011, 02:56 PM   #2
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Re: Lupus and Incontinence?

Hi Fran, I was wondering how old you were? Are you perimenopausal? I know that affects the bladder, it's the hormones that do it.

I have lupus, fibro and am in the beginnings of Menopause (almost). I am 52 and have bladder problems. I leak and urinate frequently. I get infections and pain. I had a cystoscopy to rule out cystitis. Did you have one? I was told I have over active bladder. I tell you it is a bother. It comes and goes. I was thinking maybe it is hormones or maybe my uterus. I have thought of getting the surgery too. I am not sure what to do and I see my doctor tomorrow to discuss it.

I can sympathize with you. It's not a fun condition to have. Just one more thing we have to deal with.

 
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Old 02-23-2011, 06:00 AM   #3
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Re: Lupus and Incontinence?

Franlfdj, before being diagnosed, I also had an urgency & frequency problem. The antispasmodic my urologist prescribed caused severe cramps, so I had to discontinue. Once diagnosed with lupus, Plaquenil improved my bladder problems, as well as my other problems.

Has your urologist evaluated you for Interstitital Cystitis (IC)? I believe it's more common in people with lupus than in the general population. And even though I wasn't diagnosed with IC, I found that avoiding those same foods & spices that aggravate IC helped some, too.

I hope you find relief, short of more surgery. Let us know how you make out. Wishing you luck, sincerely, Vee

 
Old 02-23-2011, 07:10 AM   #4
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Re: Lupus and Incontinence?

Thanks Vee, Yes the urologist ruled out cystitis. I thought it was that too. I don't like the idea of adding another pill to my arsenal. You are right though, I could watch my diet for those things that aggravate it. Actually I am being very careful with my diet these days because of GERD. I still drink coffee and am finding it hard to give up. One of my vices I love so much.

 
Old 02-23-2011, 07:31 AM   #5
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Re: Lupus and Incontinence?

Pauline: As I said, IC was ruled out for me, too, so I found it interesting how avoiding the IC foods helped some. Perimenopause can't have helped me, either! I was eventually able to drink cofee again. I hope you can, too, one fine day. Best wishes, Vee

Fran: That "IC" Pauline & I both asked whether you've been evaluated for is an autoimmune, too. In your shoes, I'd ask both urologist & rheumatologist (can't hurt to ask). At the point of Dx, my rheumatologist wasn't surprised at my bladder problems---basically said they're common in lupus. From that I concluded we can have bladder irritability that's nasty but that falls short of Interstitial Cystitis---but you could ask your drs. that point-blank.

Could meds & OTC's be a factor? (For example, steroids & frequency.)

My mom had her bladder "lifted" many years ago, yet continued to have bladder problems, making me suspect she had multiple reasons for her issues.
Anyway, GOOD LUCK next Monday. Best wishes, Vee

 
Old 02-23-2011, 07:48 AM   #6
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Re: Lupus and Incontinence?

OOps sorry I mixed this thread up for another one I started. Sorry I high jacked your thread Fran.

 
Old 02-24-2011, 04:59 PM   #7
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Re: Lupus and Incontinence?

Quote:
Originally Posted by pauline46 View Post
Hi Fran, I was wondering how old you were? Are you perimenopausal? I know that affects the bladder, it's the hormones that do it.

I have lupus, fibro and am in the beginnings of Menopause (almost). I am 52 and have bladder problems. I leak and urinate frequently. I get infections and pain. I had a cystoscopy to rule out cystitis. Did you have one? I was told I have over active bladder. I tell you it is a bother. It comes and goes. I was thinking maybe it is hormones or maybe my uterus. I have thought of getting the surgery too. I am not sure what to do and I see my doctor tomorrow to discuss it.

I can sympathize with you. It's not a fun condition to have. Just one more thing we have to deal with.
To answer your question of my age Pauline, I am 48 and not yet menopausal. I had my uterus removed because it had fallen and was on the verge of prolapse. Thats when they did the bladder tack, thinking it was all that was needed to fix the incontinence. They were wrong! But then the sling didn't help either. I have not had a cystoscopy to rule out cystitis. I went to the urologist Monday and he suggested that I have over active bladder. So he gave me samples of Vesicare and wants me to keep a 48 hour urinary flow sheet. I feel like it's a waste of time. When I go back to see the urologist I will ask him about evaluating me for Interstitital Cystitis. Thank you and Vee so very much for your help... Lord knows I can use the help!

 
Old 02-24-2011, 05:51 PM   #8
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Re: Lupus and Incontinence?

FRAN & PAULINE, there IS something called "lupus cystitis".

FRAN, in your shoes, I'd do the 48-hr. urinary flow sheet, mainly because it can't hurt, literally. In contrast, I think the IC test is a knock-out test, sedation required. I avoided it, because once I identified my BAD foods/drinks and also got great overall results from Plaquenil, I didn't need it. (But if I'd felt it was necessary, I'd have done it, no problem.)

FRAN, how long has it been since your SLE diagnosis & starting medication for SLE? Is your medication Plaquenil, or something stronger in the class 2 or 3 meds? *If* you're taking Plaquenil and only started it recently, I think it can take 4-6 months to reach full effect... for what that's worth.

PAULINE, no way you're a "highjacker". We're here to cross-pollinate, right?

Hope you both get improvement soon. I still get episodic urinary misery & hate it, so I know what you're saying. Ever onward! Vee

 
Old 02-24-2011, 07:47 PM   #9
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Re: Lupus and Incontinence?

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Originally Posted by VeeJ View Post
FRAN & PAULINE, there IS something called "lupus cystitis".

FRAN, in your shoes, I'd do the 48-hr. urinary flow sheet, mainly because it can't hurt, literally. In contrast, I think the IC test is a knock-out test, sedation required. I avoided it, because once I identified my BAD foods/drinks and also got great overall results from Plaquenil, I didn't need it. (But if I'd felt it was necessary, I'd have done it, no problem.)

FRAN, how long has it been since your SLE diagnosis & starting medication for SLE? Is your medication Plaquenil, or something stronger in the class 2 or 3 meds? *If* you're taking Plaquenil and only started it recently, I think it can take 4-6 months to reach full effect... for what that's worth.

PAULINE, no way you're a "highjacker". We're here to cross-pollinate, right?

Hope you both get improvement soon. I still get episodic urinary misery & hate it, so I know what you're saying. Ever onward! Vee
Thank you Vee, I am so grateful that you openly share the knowledge you have gathered from your life long journey. I first posted on here in Jan. 2011 "Feeling Overwhelmed!" I was dx with SLE in Dec 2010, put on Plaquenil 200mg bid and Celebrix 200mg daily. So what are the BAD food/drinks? I am at the point I will do anything! I went to work the last two days and soaked threw 6 maxi pads in 12hrs both days. That was just from the "leaks" as I stood up, or walked down the hall,or just standing at the desk talking...I ended up lining my panties with a newborn diaper until I at home. It's awful and I wish it would stop. So thank you for any advise you have. I am so glad I found this Message Board.

 
Old 02-24-2011, 08:53 PM   #10
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Re: Lupus and Incontinence?

Fran, since you started Plaquenil in Dec 2010, maybe results are still building? They say Plaquenil takes 4-6 months to reach full effect, so you could ask your prescribing dr. about that.

For possible bladder irritants, you could research IC & discuss with your dr. Personally, my problems were with caffeine (tea/coffee), strong spices (pepper, curry, etc.), artificial sweeteners (diet soft drinks, etc.), acidic foods (anything with vinegar, like salad dressing, and the like).

Since starting Plaquenil, have you gone downhill bladder-wise, or stayed the same? If no worse, maybe there's hope that Plaquenil will kick in & help your bladder misery? If worse, maybe you should ask rheumatologist & urologist to confer?

I had years of urinary misery---AWFUL---so I undertstand, as do others here. Hang tough. We're always here for you. All my best to you, Vee

 
Old 02-25-2011, 07:10 AM   #11
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Re: Lupus and Incontinence?

Thanks Vee, I started the Plaquenil about the same time that I had my Bladder Sling surgery, so needless to say I thought the surgery was a sure fix. It did help with the stress incontinence (which is what it was designed for) but not the urge and frequency incontinence. :/ So to answer your question I guess bladder-wise it has stayed the same.So I will try to give it more time. And watch what I eat and drink. What makes me feel even more frustrated about all this is that I work in a peds and neurology unit as a nurse tech (CNA) at a large hospital and I'm amazed how so many medical personnel know so little about lupus! I have gotten more from you guys and the internet than I have from any of my doctors!!! And I've just started my lupus journey. I can't imagine the emotional roller-coaster rides some of you guys have been threw! Bless you all for your struggles! Again, Thank you for being there! You make a difference.

 
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