Author Topic: Constant urge to urinate anyone?  (Read 8197 times)

irish

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 13433
Re: Constant urge to urinate anyone?
« Reply #15 on: October 23, 2015, 09:42:23 PM »
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

cccourt1942

  • Hero Member
  • *****
  • Posts: 1532
  • Suffered from numerous symptoms for about 25 years
Re: Constant urge to urinate anyone?
« Reply #16 on: October 25, 2015, 07:31:15 AM »
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
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

SjoGirl

  • Hero Member
  • *****
  • Posts: 2116
Re: Constant urge to urinate anyone?
« Reply #17 on: October 27, 2015, 03:52:48 PM »
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.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

Nomad

  • Sr. Member
  • ****
  • Posts: 390
Re: Constant urge to urinate anyone?
« Reply #18 on: October 27, 2015, 04:51:32 PM »
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.
SLE, Sj.  Syndrome, IC, Atypical Trigeminal Neuralgia, ITP (low platelets)... Various meds and lots of vitamins. Trying to eat healthy; seems to help a little.

Princess Tusi

  • Newbie
  • *
  • Posts: 25
  • everything is awesome-lego movie
Re: Constant urge to urinate anyone?
« Reply #19 on: October 27, 2015, 09:40:49 PM »
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....
PCOS '97, psoriasis, abdominal angina, connective tissue disorder with Sjogren's like symptoms '15. Cetirizine, Plaquenil, Prednisone,Gabapentin, Mycophenolate. AIP since 09/2015

SunshineDaydream

  • Hero Member
  • *****
  • Posts: 705
Re: Constant urge to urinate anyone?
« Reply #20 on: May 18, 2016, 06:34:38 PM »
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
« Last Edit: May 19, 2016, 04:18:34 AM by Linda196 »
Sjogren's, lupus, OAB and osteopenia
Rx: Evoxac and Myrbetriq
Vitamins and Supplements: A, B complex, C, D3, E, calcium orotate, magnesium glycinate, D-Mannose, curcumin, fish oil, probiotic

INspirD

  • Newbie
  • *
  • Posts: 10
Re: Constant urge to urinate anyone?
« Reply #21 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. :-\

Sharon

  • Hero Member
  • *****
  • Posts: 1314
Re: Constant urge to urinate anyone?
« Reply #22 on: May 20, 2016, 08:58:58 AM »
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.
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

SunshineDaydream

  • Hero Member
  • *****
  • Posts: 705
Re: Constant urge to urinate anyone?
« Reply #23 on: May 20, 2016, 10:54:20 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.
Sjogren's, lupus, OAB and osteopenia
Rx: Evoxac and Myrbetriq
Vitamins and Supplements: A, B complex, C, D3, E, calcium orotate, magnesium glycinate, D-Mannose, curcumin, fish oil, probiotic

Carolina

  • Hero Member
  • *****
  • Posts: 5753
  • —if it ain't one thing, it's another." Roseanne R.
Re: Constant urge to urinate anyone?
« Reply #24 on: May 21, 2016, 08:20:00 AM »
The answer for me is D-Mannose capsules.

Best wishes, and Hugs, Elaine
Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

LucyD

  • Hero Member
  • *****
  • Posts: 592
Re: Constant urge to urinate anyone?
« Reply #25 on: May 21, 2016, 10:50:46 AM »
I have this problem also.
Dxs: Sjogren's - seronegative, UCTD, soft tissue joint pain, Hypothyroidism
Medications: Plaquenil 400 mg/day, Restasis, Synthroid, Cytomel, Celexa, Deplin (L-methylfolate) (for MTHFR genetic defect)
Age: 65

SjoGirl

  • Hero Member
  • *****
  • Posts: 2116
Re: Constant urge to urinate anyone?
« Reply #26 on: May 21, 2016, 11:39:31 AM »
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.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

SjoDry

  • Hero Member
  • *****
  • Posts: 936
  • "When you are battling with a gorilla, you don't g
    • Sjodry and Parched
Re: Constant urge to urinate anyone?
« Reply #27 on: May 23, 2016, 11:04:33 AM »
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
Sjodry
http://sjodry.wordpress.com/

Female 55 y/o; SJS Primary; CVID; Autonomic Neuropathy: Chronic Digestive/G.I. issues; Leukopenia;Tachycardia; Bronchiectasis; High Blood Pres; R.A.;Chronic Pain; Sub~Q IVIG infusions~Hizentra; Plaquenil; Restasis; Gapapentin; Breathing/nebulizer meds; Pain meds;

Sharon

  • Hero Member
  • *****
  • Posts: 1314
Re: Constant urge to urinate anyone?
« Reply #28 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?
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

SjoDry

  • Hero Member
  • *****
  • Posts: 936
  • "When you are battling with a gorilla, you don't g
    • Sjodry and Parched
Re: Constant urge to urinate anyone?
« Reply #29 on: May 23, 2016, 12:17:17 PM »
Sharon,

I don't know. I never got an answer. I will need to check with my Urogynecologist next time I see her.

SjoDry
Sjodry
http://sjodry.wordpress.com/

Female 55 y/o; SJS Primary; CVID; Autonomic Neuropathy: Chronic Digestive/G.I. issues; Leukopenia;Tachycardia; Bronchiectasis; High Blood Pres; R.A.;Chronic Pain; Sub~Q IVIG infusions~Hizentra; Plaquenil; Restasis; Gapapentin; Breathing/nebulizer meds; Pain meds;