In another post from today, an article was shared that discussed non-obvious symptoms and problems associated with Sjogren's:
"Other exocrine glands may be affected: for example, mucous membranes of the upper airways and urogenital tract, the sweat glands, and even exocrine pancreatic function. Common complications can include recurrent otitis media, chronic sinusitis, accelerated dental caries, gingivitis, vaginitis, and laryngitis.1"
This got me thinking......does anyone else here have problems with urinary retention? Ie, having difficulty either initiating urination or with completely emptying the bladder? I'm currently trying to figure out why I have this problem but hadn't thought of Sjogren's directly affecting the bladder (and the young urologist is not sure what's causing it, so I may have to bring him some literature if this is a route that needs to be investigated, not that I'm sure how he would do that, or if he needs to).
When I was hospitalized with severe neurological problems, I experienced both central and peripheral NS malfunction so they thought it was MS. In fact, while in the hospital, I was catheterized because I couldn't urinate at all. It resolved with high dose steroids so I didn't follow up on it. Over the years, I've had moderate difficulty with either initiation or completely emptying come and go but was never able to get someone to help (the neurologist would tell me to see a urologist; a urologist would say he thinks it's neurological and see a neurologist.....not kidding!).
It's worse since I reduced the cortef/steroids, so I've been trying to pursue diagnosis. The young uro was nice but admitted he didn't know (I appreciate honesty though!). I had a CT scan done last week when I was experiencing severe peri-ovulation cramps, which is when I often experience urinary retention (but lately, it's been continuing past the cramp window, like now). Anyway, there was abdominal fluid (the gyn thinks I am experiencing abdominal inflammation from fluid leaked when multiple follicles are popping over a series of days, so maybe this is confirmation of the fluid, anyway; her advice-take more pain medication) but otherwise nothing obviously wrong with the bladder.
Again, I'm starting plaquenil this weekend, so maybe this'll resolve then. Do others eperience this?
Not me, I feel like I have to pee all the time, whether I do or not. :o
YES - I had problems with this, and chronic UTIs for probably 20 years before being diagnosed. I went through all kinds of painful procedures, scoping, etc - all inconclusive.
Then I got diagnosed and started on Plaquenil (and eventually Mtx) and BOOM - all symptoms pretty much gone. AFTER 20 YEARS!!!!
I mentioned it to my Rheum, and he said there has not been much research, but there's a lot of anecdotal evidence to support this idea - particularly when it comes to something called "trigonitis" (http://en.wikipedia.org/wiki/Trigonitis), which involves mucosal tissue at the base of the bladder - and what does Sjogren's attack? YOU GOT IT. It can be very hard to diagnose and many docs - even Urologists - don't think to look for it, or know much about it.
I was not willing to endure more tests, but considering my medical history and how I responded to treatment of the AI disease, we are CONVINCED that this is what I have/had.
I am in kind of a mini-flare right now and have had a little bit of irritation, but I have also been drinking coffee and eating tomatoes (two triggers for irritation in there), but NOTHING like it used to be.
I hope some of that helps - at least to know you have company! It can be really miserable. :( I hope you get relief soon...
Earlier this week I passed a kidney stone. Since then I have not been able to control urination. I keep hoping that I will regain control.
I went for a couple of days with nothing to eat and mimimal fluid. I was running a fever. The fever broke and I started to eat and drink again. I had no control and had to wear diapers again. I hope that I can wear normal clothes soon.
Well, Cranberry juice is my friend I hope it works.
I was reading that natural herb butterbur supposed to help with the bladder issue..? I guess it also helps with allergies and migraines?
Seems to be really good from what I read? I bet its drying?
Gursie
Some medications also have urinary retention as a rare side effect. Search your medications and "urinary retention" and check your meds, especially if you have started something new. I got that from an antidepressant once.
Sharon
Difficulty initiating urination or retention is a very common symptom of autonomic dysfunction/neuropathy. Do you have other neuropathy problems? If so, you should probably mention this to your neurologist.
Per my rheum, who is a Sjogren's specialist and The Sjogren's Book by Daniel Wallace, you can get bladder and kidney complications from Sjogren's. I had some issue that resolved quickly when my steroids were increased for other symptoms so we did not pursue it. There are severel complications that can arise and lead to kidney failure if not properly treated.
Friedbrain...
Actually, Im having issues with this..mainly started about 8 weeks ago. Im also thinking it might be the SS and CNS issues.
Ive had alot checked out. All the sudden, couldnt empty my bladder fully and was having major female cramping? I had a total hysterectomy
over 6 years ago? Burning and pain severe. I also noticed that I cant empty my bowels much either...dont get urges (sorry). I had been cleared of any infections and then had a CT scan of my abdomen/pelvic area. It showed a few things..possible colitis, thickening of my large intestine and inflammed rectal area, all which made sense since my stomach hurts so bad all the time. I also had a small kidney stone forming.
Anyways, had a colonoscopy after this and guess what? he found nothing....but, they only see on the inside of it all. I then went to my uro-gyno who thinks its lack of estrogen and I have some pretty bad atrophy going on. He told me to use some estrace vaginal or premarin cream. He also thinks it might have to do with the autoimmune? Since my neuro issues are bad, was wondering about that?
I know that lack of estrogen can cause alot of this. My rheumy thinks that I also may have some scar tissue or endometriosis back and need surgery for that? ughhhhhhhh...so many things need to be done? what to do first?
I will prob be betting a rituxan infusion done soon. If I remember right, I think it helped my bladder/gastroparesis issues several years ago.
I guess maybe see a few more doctors and see if they can run some tests etc?
Gursie
slccom, the only change in meds this year was a decrease in my cortef (steroids), at which point the urinary retention significantly worsened. Very clear cut correlation. Which is just another reason supporting an autoimmune connection. How, I don't know yet. But of all the boards I've visited for all the different health issues I have, it seems like Sjogren's may be it (or autoimmune). All of your responses on this thread have been helpful in confirming my suspicion!
Christine, I'd believe it, so that's one reason to pursue a diagnosis even if it isn't to the critical point (ie complete inability, like I had in the hospital; one reason I haven't been TOO concerned is that I know what crisis is, and I don't consider this a crisis......more of an irritating and somewhat disconcerting side problem). However, strangely, this week (which has been a MAJOR flare, one of the worst ever of feverishness and achiness all over), in the mornings when I've woken up, I haven't felt an urge to urinate even though I sometimes have to go even several times a night because of full bladder. So, even though I don't feel the painfully full bladder, I've gotten up and.....yup, full bladder. Which tells me that, for some reason, my bladder is less sensitive right now to "full" signal", which is NEW :( and I can see how, if I waited for full signals that aren't coming.....could lead to other problems. So I'm going regularly (something the urologist had suggested last month, but which I initially pooh-poohd since I wasn't having that problem that I was aware of) just in case it's more significant than I realize.
Gurs....I had a CT scan when I was experiencing the abdominal cramping and urinary retention a few weeks ago, which is when they observed the "fluid in the pelvis". Basically, the same thing the gyn hypothesized was happening (from ovulation), but I really don't appreciate my entire abdomen being inflammed because of it! Starting the plaquenil this weekend, so hoping it will reduce that, too! (hmmm, very high expectations for this plaquenil lol) If you had the CT scan while you had the cramps, maybe ask if they observed fluid. Maybe they wrote it off at the time as not worth mentioning.....?
Friedbrain...
I guess on the tests, it showed a little fluid in the pelvic area, but nothing out of the norm. Im just like you now. Trying to figure out if
the inflammation from the autoimmune is doing lots of this. My gyno said combo of this and lack of hormones. I have alot of pressure
in my bladder area..terrible. Do you have any gastroparesis at all?
Let me know how the plaquenil helps you...very curious?
Gursie
Gursie,
My initial response was no, that I don't experience gastroparesis (I don't experience any problems with my BM) but....and I don't know if it's the same thing....I sometimes wonder if my digestive system is slow. I've been on a special diet for about 13 years, a self-modified "diabetes diet" where I eat low carb, with proteins/fats, and smaller but more-of meals because I'm super-sensitive to carbs (they either make me super sleepy and pass out or give me tachycardia-awful!). On the few occasions when I do eat a normal meal (if we go out to dinner in public, or are eating with friends etc (when there's "peer pressure"), I will feel VERY bloated for hours, sometimes all night long. UGH. But I don't know if that's because my stomach/digestive system is used to smaller meals now, or if there's something slow about them that's not normal. It's not something I've ever asked a doc about or even mentioned.
Will keep you posted :)
I'm kinda freaked out, so would appreciate it if someone could just tell me who to call...... :-[
After last week's really obvious (to me) bad autoimmune flare, my bladder has not recovered. Well, the urinary retention that I've had before got worse after I reduced my cortef earlier this year and though sporadic, started two weeks go this month (my health goes in monthly cycles per hormones) with what may have been bad inflammation due to ovulation. Anyway, that I was willing to ignore......
BUT last week, with the whole body flu thing going on, it seems as though my bladder problems have worsened such that I have not had full-bladder sensation for DAYS now! I don't even feel myself going unless (sorry TMI.....) I feel splashback on my thighs iykwim. So my sensory neurons influencing bladder control are completely kaput.
Researching this, I've come up with reflex neurogenic bladder (urologist was simply calling it neurogenic bladder), where both sensory and motor neurons affecting bladder control are affected. THis fits with my clinical presentation, and even possibly with the progression (not quite to the point of incontinence but I sure don't want to get there!!!). And the likely fit is multiple sclerosis. True that I hven't been tested for that (with lumbar punctures) in 9 years (though did just have a new "baseline" MRI this past summer that only showed a few nonspecific spots that were not clinically meaningful, so they said-whew). So I'm not going to jump on that Panic Bandwagon right away but..... (thanks to this site, I'm gonna blame this on Sjogren's, which in my mind is less fatal than MS.....)
I *do* think it's autoimmune and I DO want to do something to STOP it instead of sitting here waiting for it to go away (cuz, um, it's not). So here's my dilemma:
1) the plaquenil that the rheum recommended is sitting on my counter (I was told to get better before starting it, catch-22, no?) will take a while to have an effect, according to ya'll; also, the rheum and all her fellow rheums are inconveniently at a conference this week so apparently not returning calls (because I left a message for advice &*%$#^)-tho an option is that I could call again and express my worry and beg for advice
2) my urologist is calling it "neurogenic bladder" of unknown cause and says to come back for an appt and we can discuss where to go next (tho it only took me five min of internet research to figure this one out, so even tho the guy is barely out of diapers, he's still got an MD degree so I'm kinda feeling disappointed). Still, he IS the bladder expert, so maybe I could call him and ask him about increasing my steroids/cortef?
3) call and try to see my new baby neurologist (any doc I can get into here is brand-new-out-of-school) and talk to him about increasing steroids to treat this (tho in the past, I have not had success with neurologists wanting to talk bladder, even though in the past, urologists have told me to talk to neurologists (gah). Still, he's nice and close by (the urologist is in the city and I practically panic at the thought of trying to get back to see him)
4) I just wing it. I have the cortef, I know I can updose (increase my intake, which one is supposed to do if there's a mental/physical stressor). I SHOULD have done that last week when I first started feeling flu-like. <sarcasm on> Yay me for the experiment of NOT updosing and seeing that, yes, I will become a giant immune attack. <sarcasm off> Increase my cortef without dealing with doctors. I *do* think I need to increase my steroids. The question is which doctor will take responsibility for telling me to!
:(
What a terrible flare you are having.
I would start taking the Plaquinel. I too have problems initiating and feeling that I have to pee after having my daughter 8 years ago. Word was back then that she had injured my bladder. I wonder...
They gave me bethancol. It strengthens and restarts the bladder nerve. (I had a catheder for three weeks from her being 2 weeks old until 5 weeks old. It took a week for the bethanacol to work.)
I do pee better after Plaquinel. Not that I feel like I have to pee really, but the stream is better. I rarely get the "I gotta go!!!" feelings like I used to, before when I had chronic infections, but I do get a lot of pressure in my pelvic region.
I would consider this to be consistent with Sjogren's cause it sounds too familiar. I am so sorry, it is one of the worst things I ever went through. (((hugs)))
Thanks the the supportive words. You maybe can imagine how huge of a relief it is to know that Sjogren's may explain this versus MS (which is what they thought I had when I was catheterized along with other problems 10 ys ago). That's why I'm not totally panicking over the worsened state. I did talk to or leave messages to ALL THREE doctor options because I REALLY want to get someone to tell me what to do to make this better. The rheum's nurse said call the urologist. I left a message with the uro's office to call me, but I don't have much hope because I talked to him personally yesterday (to go over the CT scan) and he said he doesn't know and that I should make an appt to talk about where to go (can you say s.l.o.w.p.r.o.c.c.e.s.s.); and talked to my neuro's nurse, who was really nice but suggested talking to the uro, too (tho she will leave a message for my neuro; I can't get in to see him until Friday, so that's the best I can do there).
So......argh.......for 30 minutes of calling, I got nuthin.
What you need is a good Genetic Engineer to splice you together a hybrid of a Neuro-Uro-Gyne-Rhumetologist....
:o :P ;)
(Just thought you could use a little humor...I am so sorry you're suffering!!! Haveing been through 20 years of urinary symptoms and infections, I know how UTTERLY miserable and desperate it can make you. :-[)
Hope you get some relief VERY soon....
I have the other problem, I cant tell when I have to go really till my bladder is huge. Its like there is some sensory nerve damage there or something, and the way I tell is pressure on other organs
Ha, SiS, that would be awesome! :D
No, Tivia, that's what I mean, and this is a completely new problem for me, not feeling that my bladder is full until I feel some pressure. No bladder pain in my abdomen as it fills, and no feeling when I urinate. "Reflex neurogenic bladder" sounds like a fit because both my sensory and motor neurons seem to be affected now. I have experienced both motor (varying difficulties with initiating, slow/narrowed stream, and incomplete voiding requiring straining and weird positioning to try to finish) and now sensory issues, and I would think there must be an explanation that fits both (and, if so, I kinda would like to stop the progression before it gets to the point of incontinence!):
http://www.spinabifidasupport.com/neuroblddr.htm "The reflex neurogenic bladder occurs when both sensory and motor bladder pathways in the spinal cord are interrupted above the sacral segments. Bladder sensation is absent in the presence of lesions above the lower thoracic cord. The detrusor shows uninhibited contractions and the external sphincter may relax either in a physiological fashion, leading to incontinence, or it may relax incompletely and produce bladder-external sphincter dyssynergia. This leads to increased residual urine, which then increases the risk of infection and eventually brings about upper urinary tract deterioration. Multiple sclerosis and spinal cord trauma are the most common disorders associated with this form of bladder dysfunction."
Oh god its always something isnt it...
I am at the point that I will just suffer in silence from now on , its pretty bad when the nurses at the clinic go...you should just get a job here already since you are here all the time :P Why does this darn disease have to be so hard to see, I mean if it presented with some major visual symptom then the docs would go...ahhh thats sjogrens ! But as it is its a great deceiver and makes most sjs patients look like hypochondriacs :-[
Tivia, it's true! I was feeling nuts myself this week because my symptoms were changing almost daily (worsening, then some getting better, some not..). I keep a calendar or I'd never be able to keep them straight. And then trying to explain them to three different doctors......no way to keep it short or probably make sense.
When I had the neuro problems 10ys ago, my cranial nerve palsies waxed and waned in significance over the month I was so very sick (6th the entire time, III and IV varying in intensity and even from eye to eye, and other CNS problems), and even subtly for several months after the high dose steroids mostly resolved them. For that reason, my dh was convinced I'd picked up some exotic virus from an international conference I'd attended right before.....he pictured this virus jumping around in my brain, since the symptoms kept changing and didn't fit a single constant explanation. I'm sure I sound like I'm making it up when I try to explain this to new doctors, but I have all the records in a binder to prove I'm not crazy!!!
My young uro said he thinks cortef would be "off label" if I chose to take it but said I could go back up to my previous dose if I wanted to, and then meet with him about further testing. My young neuro said to not take the extra steroids and see him on Friday; if I experience incontinence or can't go at all, call (er yeah lol). <sigh>
(Oh, and I have a PhD in a medical sciences field, which is why I come up with hypotheses about what's going on based on 10ys knowledge of my health, and then want to discuss them; since they don't have my health history memorized, it gets complicated trying to explain)
I also think there is a strong neuro component to all this. In all honesty, I think the Sjogrens neuro issues like MS, can be quite severe and to me ,pretty much the same, and often think that many people diagnosed with MS, might in fact, have Sjogrens. There are many articles on this too. I think they have no clue on how severe Sjogrens can be. My neuro issues have left me bedridden for the last 6 years and all my symptoms mimic MS, but, I know I dont have MS?
I hope you & I and others can find some relief. My bladder hurts so bad.....Im guess if I get Rituxan in the next few weeks and it seems to help, I will know what the root cause is..
Gursie
Friedbrain, MS was what my doctors suspected in the beginning but they never found any evidence aside from some O-bands in my spinal fluid (which sjogren's can cause too). Then recently they even suspected ALS. Anyway there is an article on Medlink titled Sjogren's syndrome: neurological complications. And lo and behold one of the first things is mentions is the MS and Sjogren's similarities, and at the end an ALS similarity is mentioned as well. I would think it is safe to say that with any neurological complication sjogren's should be considered as a possible cause.
http://www.medlink.com/medlinkcontent.asp
If this link doesn't go directly to it you can type the title in search and it will bring it up.