Anyone else found themselves fairly suddenly dealing with a near constant urge to urinate? I have been checked for infection, nope. Doc also checked to see if it might be from my back, probably not.
I'm taking Cranberry pills in hope that it might help and see my neurologist tomorrow (he's wondered off and on for years about whether I might have MS). Otherwise need to wait to see a urologist in November. Goodie another doctor to add to my already too long list!
I have it all the time. My nurse practitioner said I could see a urologist if I wanted to, but I chose not to at this time. I thought years ago it might have been MS, but been cleared of that. Problem is SJS mimics MS. So, at my age (64), my nurse practitioner told me it is probably the hydrochlorothiazide (diuretic) I am taking for high blood pressure and for me it is called urgent urination, which means I can't move fast enough to get to the bathroom before I start leaking. I read that Sjogren's can cause it too, on a neurological end. Good luck. Hugs.
Yes, it can get extreme, to where you get out of bed to visit the bathroom, and by the time you return to bed with the pillows arranged and the covers on, you have to go again. And this just repeats over and over.
I am pleased to say that I solved this problem, but I am not sure it will work for anyone else. The solution that worked for me is to drink more water, a couple tall glasses when that happens, and this totally solves the problem.
I know this solution is counterintuitive, but I listened to my body to arrive at this solution, and it works for me.
When I don't drink enough water is when this happens. I think I have I have to drink enough water to have my kidneys flushed out, so they work correctly. Drinking more water seems to correct the problem.
Currently I have been going more than normal. I wake up every night to go. My urine has a golden color to it all the time now. On occasion it will be clear. All tests of my urine have been normal. Must be part of the the whole dryness thing. Had prostate exam and blood work done. All were normal. Stinks getting up every night. Frequency yes urgency no.
Sorry to hear you're going through this. Just be glad you're not dealing with the UTI, yeast infection from antibiotic, and OAB trifecta.
I've experienced the constant or frequent urge to urinate three times during the past 15 months, each after having a successfully treated UTI (e.g., had a UTI, bacteria gone after antibiotics, but still feel frequent or constant urge to go). I'm not talking about having to go once or twice during the night. I'm talking about urge day and night even if I've already just gone, and often not producing anything or enough worthy of the level of urgency once I get to the bathroom.
The first time during the summer of 2014, I was out of town for three weeks so had to go to an urgent care facility. The doctor said I probably had irritated bladder (irritated bladder?! More like irritated SunshineDaydream. That frequent urge feeling is annoying!) due to unsuccessful UTI home remedies followed by antibiotics. He gave me a prescription for enough Oxybutynin to tide me over until I could get to a doctor at home. Oxybutynin is to treat overactive bladder or urinary tract by reducing muscle spasm. He said to stop using it after a week to see if the urge had stopped. The drug worked, but I read about irritated bladder and figured it was basically inflammation. I stopped taking the Oxybutynin, took some ibuprofen (anti-inflammatory) for a couple of days, then stopped both Oxybutnin and ibuprofen. All was good after that until a few months later.
In winter of 2014, successfully treated another UTI but urges continued even after trying a leftover Oxybutynin pill. Saw NP at urologist's office who gave me samples of Myrbetriq, another urinary anti-spasmotic for overactive bladder but I think newer and in a different class of drugs. Before I got around to reading about possible side effects (well, it was a couple of weeks), the symptoms went away.
Well, the same crap just happened again starting this past Labor Day weekend, the Oxybutynin didn't work, and I noticed this week that my symptoms stopped on their own. I still didn't get around to reading up on Myrbetriq.
The good news is I saw Oxybutynin is available OTC now in the women's products aisle, but in patch form and slightly lower dosage than the prescription from the urgent care doctor. Maybe you'll want to try that after trying an anti-inflammatory.
Had the symptoms persisted despite OAB drug treatment, the urologist's office said the next step was to move on to invasive procedures to determine whether something else was causing the symptoms.
do you have discomfort/pain in your bladder area?
people can have interstitial cystitis which sort of mimics a bladder
infection. my daughter was diagnosed 12 years ago with it.
I hope you do not have MS or interstitial cystitis
let us know what they say
shelly
Thanks all. Interstitial cystitis was mentioned by the PA as a possibility. I might have thought inflammation, but I've taken acetaminophen with no relief for the problem. I am trying to drink more water, but it generally goes through me pretty quickly. I've even tired cranberry chews, but no help from those either.
I hear you about the feeling of constantly needing to go. When I saw my PCP today I had just gone before going to her office and by the time I was with her 30 minutes later I felt I needed to go again.
Speaking of irritation, not with me, she's irritated that they can't find a treatment that will help my SjS (which she believes is the root cause of all of what I'm experiencing). I told her the upside is I'm not scared like I was when this all first started and I had a great summer.
I see my new rhuemy one month from tomorrow. My PCP and I are both hoping he'll find something that will help.
Thanks again, so helpful to "talk" with folks that understand what I'm going through.
About 15 seconds after I urinate, I urgently have to urinate again, and sometimes a second time as well. My sister with MS also has that symptom. She found a physical therapist who was able to give her some exercises that helped a little. Now I just stick around the bathroom for awhile afterwards.
I've noticed just recently that when I suddenly have to go I need to go immediately. Just today I was in a shop and hopping from one foot to another and had to run out of the store to find a bathroom. I didn't feel like I could make it another minute. This is a new thing for me and don't ever remember this feeling like I'll pee myself if I don't go immediately!!!
Why do't you folks do a search for Trigonitis. I have had this for about 50 years. It has not bothered me a very long time and I think it is because I am on prednisone and IVIG.
I got this at age 21 and am 72 now. I have done quite a few posts about this over the years and you should be able to see what I have gone through and had done. I swear it is another inflammatory process that plaques us. Lots of pain but no infection. It is the trigone of the bladder that has the inflammation. Good luck. Irish
Just a comment about cranberry tablets in case it's any help to people here. Several years ago I had around seven episodes of cystitis in one year and was presribed seven rounds of antibiotics. I was getting desperate with it. Then I tried Holland and Barrett triple strength cranberry capsules, and since then I have never needed antibiotics for this problem again. I have recommended them to anyone I know who suffers with cystitis.
By the way more diluted forms of cranberry like cranberry juice had no effect at all for me. And of course I should point out that the capsules only work against bacterial infections, so if there is some other cause for the frequent urination they will be no help.
Just be aware that should you have interstitial cystitis then cranberry juice would aggravate the bladder. My poor daughter, and I feel very badly for this, kept having what I thought uti. I kept giving her cranberry juice or azo tabs for uti containing cranberry. She started this at 7 years old, but was not diagnosed till one brilliant urologist poured vinegar water into her bladder and she had an instant pain reaction and dx her with IC. Now she has to stay away from acidic stuff and limit her potassium intake, both which could start a flare up. She also pees constantly and has a problem with emptying her bladder. She has to push very hard to get it out. Her poor bladder is so scarred from the inflammation which went undiscovered for 8 years that she can now only hold a 1/2 cup of urine. She is now looking at possible botox injections.
I agree with the Trigonitis comment...the area of the bladder affected in Trigonitis is a mucous membrane, and of course with sjs our mucous membranes don't work right.
Even though it's not something that is an "official" benefit of plaquenil, it CAN relieve bladder symptoms associated with sjs. It absolutely does for me! And yes, it does flare up following an infection.
Google "the uti that isn't" - there's also some interesting stuff there.
Sorry you are suffering from this - it's absolutely HORRIBLE. :-(
It happens from time to time, but not consistently where I have to go all the time, or it comes on suddenly and I can't get to the bathroom fast enough.
HI, I have this problem too, My Doc said "Sjogrens is an overactive immune system, equals over active bladder.
She also told me never hurry , sit until you pass a little more,
keep doing this because it will help to keep water infections at bay too.
Dolly x
When I suffered so badly from my trigonitis I had the urgency and burning plus the backache from #%$^. I was told by one of the first doctors I had who did a cysto on me that the inflammation was so bad on my trigone that the area was very red, raised and scabbed. Just keep in mind that this area is not very big and it is anatomically laid out so that it is on the base of the bladder and edges down into the urethra. This is why the pain is so bad. Our urethra is only about 1 1/2 inches long so you can see that the base of the bladder is in a very low place. The trigone is the tissue with the nerve endings that send you the message that you have to urinate
I took more darned pyridium(the pill that turns the urine orange and stifles some of the pain) over the years plus had prednisone urethral suppositories after having Argyol instilled into my bladder. I think that argyll is silver nitrate. The silver nitrate had to be retained in my bladder for 1 1/2 hours before I could expel it. It literally burns off the inflammation. It hurts let me tell you, but after 4-5 days of this treatment you feel like you are going to live again cause the pain is much less and continues to decrease
I am sure that my Mom had Sjogrens but she was not diagnosed. She had this trigonitis also and suffered a lot from it. She also had to have the treatments. I don't know what they treat it with these days. I do know that in 1992 when I was put on Zoloft (finally new antidepressants that I could take) my pain from the trigonitis was less. Guess the Zoloft decreased the nerve pathways in my Trigone in the bladder. I wasn't told much of this from the doctors as in education. I am a nurse and had to question docs and nurses , read and research and finally put all this stuff together.
I forgot to tell you that during these treatments the doc would take a metal "sound" that is shaped like a catheter and slide it into my urethra and up into my bladder. The normal size catheter that we use when we catheterize women is sizes 15, 18, or twenty. The bigger the number the bigger the size of the sound. The last time they did this on me I heard them say get a size 34 and it hurt big time. I felt like tissue was tearing in my urethra and it did because I bled some. I told my hubby that was the last time for that little procedure cause I was going to end up peeing in my pants. Pardon my French.
So, if you are having treatments of any kind always ask questions. I would have never guessed they would use such a big sound. The reason they did this procedure is because the sound presses on the tiny mucus glands in the urethra and causes them to secrete any mucus that might contain bacteria that could cause infection and/or inflammation. They had good reasons but got carried away on the size. Thanks for putting up with my long stories. Irish
The most recent message of this thread (from Irish) has left my head reeling.
No one believes me when I tell them in my entire life I have had one UTI. I am 73. I have always thought it was because I have always drank copious amounts of water. I have zero idea if that is right--just my opinion.
The last "thing" I had before my SjS dx was the discovery of a "caruncle" on my urethra. I did spell that word correctly. I checked in with a urologist who told me what it was. She also found a prolapsed bladder. The med for both was the same. Won't go into that. BUT...when I moved from my hometown about a year ago, the first dr. I sought was a urologist. I was inundated with questions and questionnaires of my urinary habits which overwhelmed me. Their take on it was everything being discussed on this thread. I had never thought of "constancy" in my urges as I was STILL drinking copious amounts of water. Before I knew it I was doing the PT for all those exercises and electrodes, etc. I was overwhelmed. After a month I returned for the "monthly follow up". There was little improvement. btw: I had been given an Rx for the "overactive bladder" as well. Nothing improved. (it only made me drink more water as it was drying!) And this is the culmination of this tale: as the urologist began to tell me about yet another med--I asked (again) if she had a full understanding of sjS. She cursorily stated "dry eyes, dry mouth". NOT what she had said when I first saw her. I asked her if she were aware of the amount of water we must drink. Her reply "I would limit any fluid intake after 4 or 5 in the evening." I was incredulous. I told her I would not pursue further overactive bladder activities...asked for refill on the med for my presenting concern...and walked out. Oh...and she agreed.
So here I am...a year later: what I learned a few years ago (traveling with a lifetime friend). We were away for about 10 days. Each time we passed a bathroom, she stopped to pee. I followed suit. After the experience above, I began to practice this religiously. I really don't like to go just "anywhere"...but sometimes I do. This practice has helped me immeasurably. In fact, in the last 9 or 10 months I have not dribbled or had an accident. I stopped wearing pads. It's a bit like toilet training for the SjS. I will say this, some of you have MUCH WORSE scenarios than I do. I do not presume my simple fix will fix serious conditions ...such as the one Irish describes. If you have normal plumbing and SjS--go to the bathroom more often. :)
ccc
Thanks all. Issue is not as bad this week, but then again I've been taking pain medication, which dries me out more so less to eliminate. Now to be sure I don't get dehydrated.
I have had this problem off and on. I have mild IC. Oddly, I have a worse problem with pelvic floor pain. The pain comes from any kind of bad strain or an over reacion to pain. I'll get very bad pain after a bladder infection....for weeks after the infection. Or, I might get bad pelvic pain from constipation.
Anyway, I have found drinking a lot of really good quality water helps with frequent urination. The one I like the best is Mountain Valley in the glass bottle. Reducing coffee intake is also helpful. I take D Mannose at any little sign at all of an infection. And I take Pre lief tablets if I know in my heart I'm drinking too much coffee. All of this has been VERY helpful with any and all bladder symptoms.
CCC I too have a prolapsed bladder and thought for ages that it was a UTI as the frequency and pain associated with passing urine matched. The cranberry I was taking didn't help and urine test was negative. Pelvic floor exercises were suggested as surgery can sometimes make things worse. Just a thought....
I had this situation again this spring - UTI symptom of constant urge to go but no UTI. Started mid-April. Ibuprofen for a couple of days didn't alleviate symptom. Next I tried adhering to the interstitial cystitis diet which wasn't too hard because it's pretty close to the way I eat, anyway. After a few days of that, I didn't feel any improvement. Finally, I caved and tried a dose of oxybutynin. I was trying to avoid using it because it is known to cause mouth and eye dryness. It had worked for me on another occasion when I first started having Sjogren's symptoms so I hoped it would work again. Not only did it not work this time, but it was so drying on top of my already SJS dry eyes that two days later I ended up at the ophthalmologist's office to get steroid drops because my eyes were so unbearably uncomfortable. Last week I tried the Myrbetriq sample my urologist gave me last winter. I took that two days in a row and have been back to normal (knock wood) since then.
During a recent annual exam, my GP gave me a prescription for Myrbetriq which is a daily / maintenance med. He said it is the only overactive bladder med that does not cause dryness because it's a different type of med than the other OAB meds, though the literature said it may cause oral dryness. Luckily I only needed two doses this time. He said if I couldn't tolerate Myrbetriq, I shouldn't bother with any of the other OAB meds because they are so drying that I would just have to live with the urge feeling. Myrbetriq is relatively new, so more expensive than the other OAB meds. The manufacturer has a co-pay assistance program so you can ask your doctor for information about that (it's a card similar to the Restasis co-pay program) or look for information about it on the Myrbetriq website.
Well, I guess the good news is the daily D Mannose is working. No UTIs since I started taking it in November.
Here's info on the IC diet: ic-network.com/patient-resources/diet/diet-introduction/ and http://www.ichelp.org/wp-content/uploads/2015/07/food-list.pdf
Consumer Reports comparison of OAB meds so you have names and descriptions, but Myrbetriq seems to be the best or only option depending on the nature and severity of your SJS symptoms: https://www.consumerreports.org/health/resources/pdf/best-buy-drugs/Overactive_Bladder-FINAL.pdf
This was one of the many problems I had a few months after my symptoms started in March 2015. I went to a urologist and had a cystoscopy- all clear. The frequent urination lasted for a few months, then slowly things went back to normal in that department, and another new symptom popped up. :-\
Yep, I've got it too!
Only thing exams have revealed so far is I'm not evacuating urine completely, so I guess some always remains and adds to the urgency. Why I'm not evacuating completely I have yet to discover.
Quote from: INspirD on May 20, 2016, 08:34:58 AM
This was one of the many problems I had a few months after my symptoms started in March 2015. I went to a urologist and had a cystoscopy- all clear. The frequent urination lasted for a few months, then slowly things went back to normal in that department, and another new symptom popped up. :-\
Yup, the never ending story. Having Sjogren's and associated issues is like playing wack-a-mole.
The answer for me is D-Mannose capsules.
Best wishes, and Hugs, Elaine
I have this problem also.
Thanks all. As some pointed out things come things go. I haven't had the frequency problem much for quite a while. I do occasionally feel the urge, but nothing happens when I try. As someone noted seems to happen more often if I have not drunk enough versus too much.
Constantly!
I have to laugh. I took one of my local SIP group (my Sjogren's Support Group) members with me to Cleveland on Saturday to hear a panel of docs speak about CVID.
She asked why I was picking her up so early? I picked her up at 5:30 a.m. & the drive was expected to be almost 3 hours, with the event starting at 9 a.m.. I added a few extra mins.for the total downpour we drove in most of the way & of course, at least extra time for at least one bathroom stop. It was 2 potty stops both going & coming back. She asked if I have interstitial cystitis. Uh..yes.
She was amazed...Of course this does not include all of my multiple trips to the restroom during the day long presentation.
Sharon, I am like you..not evacuating completely.
Not fun for sure...but at least I get more distance on my Fitbit.
SjoDry
Did you ever figure out why you have incomplete evacuation SjoDry?
Is it related to the interstitial cystitis?
Sharon,
I don't know. I never got an answer. I will need to check with my Urogynecologist next time I see her.
SjoDry
C3- After reading your comment on drinking copious amounts of water,
just thought I'd mention a (treatable) condition called "Diabetes Insipidus"
which may cause excessive thirst and peeing. Probably nothing to do with your condition
just reminded me of it.
Just found out my anti-depressant can cause excess urination and urgency.
I have this, but mostly due to my lack of estrogen from menopause. The Sjogrens dryness also causes this. Its a nightmare.
Wish I had some answers. I found this natural lubricant that I use all day long after I urinate..seems to help somewhat. I carry it with me in my purse too.
I know vaginal estrogen works good for a lot of women too by strengthening the tissues.
gursie
I have stage 3 kidney disease after years of living with Sjogren's.
Ironically, I've had an over active bladder badly for about four days. It is better this afternoon.
Of note, I skipped my Vagifem estrogen suppository the other day. Realizing this, several hours ago I used half of one and will use the other half later or tomorrow morning.
Also, I took some D Mannose and drank a lot of water.
Between the two things (estorgen suppository and the d mannose) I'm noticeably better.
The last few days and nights I've been having to pee all day and night. All of sudden...it's been like four hours or so and I'm fine. I think crisis averted.
Quote from: Sharon on May 23, 2016, 12:15:30 PM
Did you ever figure out why you have incomplete evacuation SjoDry?
Is it related to the interstitial cystitis?
_
I think it is. I have the same problem.
I've had IC for 24 yrs and I never really had the pelvic floor pain until recently. It feels like someone kicked me in the groin. I took Claritin for a few days and the pain is better.
I think it helped because I have Mast Cell Activation Syndrome and I think my bladder got inflamed from it .. that and the histamines I am overloaded with.
My problems in this area are still ongoing on an intermittent basis.
This article about one woman's experience, plus the embedded video by ICN president and founder, contained some useful information and referrals to books that might be informative.
http://hubpages.com/health/UTI-Symptoms-but-no-Bacteria-My-Experience
Just wanted to update what worked for me for frequency and urgency.
I decided to try to treat myself after becoming frustrated with the Urologist.
He discovered I was indeed urinating 5X more volume than a normal human being,
but chalked it up to me "drinking too much"
and told me the solution was to "stop drinking so much". ::) ::) ::)
He refused to give me any treatment.
My solution:
I remembered that progesterone increases water retention and decided to give it a try.
Though my progesterone levels are normal, I do have estrogen dominance, so raising
my levels a bit can't hurt. I began taking a very minute amount (1/6 of a tablet) every evening
and within a few days my urination symptoms were much improved,
dare I say "back to normal" with a week!
Interestingly, my levels of thirst have also normalized with this,
perhaps because not everything I drink escapes my body so quickly. :)
I've had problems with UTi's off and on for my whole life. There are times I've had a long remission. It got better when I went back on estrogen. I don't know what your age is, but for me, lack of estrogen caused constant burning and irritation in that area. I also drink a lot of water now. I think the inflammation we have in our mucous membranes can also affect our bladders, like others have said. Some people here take D mannose to prevent UTI's. A change in diet can help to a bland diet, no caffeine or carbonated drinks, also a low oxalate diet may help some. I know it's a miserable feeling. I even had to take pain pills one time for a UTI it go so bad. I hope you get some relief.
Good job, Sharon!
So, Sharon you might think that it is because you are estrogen dominant and your progesterone went a little low? I hope that is a help for me. I am estrogen dominant and have had an IUD for six years in order to prevent more uterus polyps or cancer. After five years, the progesterone in it decreases quite a bit. My estrogen is still really high. I don't have any progesterone pills to take, so I would have to see my GYN about it. Also, as I said, my anti depressant can cause excess urination and urgency. My urine test was unclear, as there was too much contamination.
I really don't know if it has any relation at all to low progesterone levels
as my levels have been normal based on my last hormone tests.
I'm also unsure if has something to do with hormonal imbalance such as that cause by estrogen dominance, since when I just tried lowering my estrogen to balance things out I still had the urination symptoms.
All I can conclude is that raising progesterone a bit helped me with this symptom.
May just be because progesterone naturally has an anti-diuretic effect.
(An additional advantage is that raising progesterone has a calming effect in general)