Does anyone else have any bladder problems?

[ashbones]

Hey
i am having  A LOT of tests done to see why i am in agony everyday. It's so horrible, i have burning/pressure and pain in my bladder. makes me think i need to urinate every 10 minutes. it consumes my life. Not to mention i don't sleep because i constantly feel like i need to go to the toilet Wasn't sure if it was related to sjogrens or fibro. I just had a blood test today (again) and i'm having an internal ultrasound in a week. Ugh - i need the lap surgery but i'm told  (with being on the public waiting list because i don't have thousands for the surgery) it can take up to 3 years for it to get done. I just don't wait to have this pain everyday..even for years

[louise]

Hi,

Yes  I have had same problem long before I was diagnosed with sjogrens. It turned out to be Interstitial cystitis of the bladder. I had pain I was urinating what seemed like 50 plus times a day. I had pain pressure and no sign of infection. It took 3 doctors and several test before finally the urologist did surgery just to have a look at my bladder and found the I.C. He then stretched my bladder and put a drug called DSMO in my bladder. That was probably more than ten years ago. I will have some pain and frequency every once in a while,but I have usually eaten food with a lot of acidity. I know how painful it can be but out of all my symptoms of sjogrens this is the easiest to control.I was told by my rhuemotoigist that I.C. Is common with sjogrens. The urologist never mentioned sjogrens or gave me an explanation of what could have caused it. Try and find a good urologist. Hope you get some relief soon. Google I.C. It will let you know what foods and drinks too watch out for.

[Diane54]

Since being diagnosed last year I have had 3 bladder infections and I haven't ever had a bladder infection until then and I am 58 years old!

[louise]

I was treated for several infections but my urine never had infection in it . But because of my symptoms they would give me antibiotics because they could not find what the problem was. Antibiotics never did anything for the bladder issues I was having.

[skoons]

Bladder problems was one of my first main symptoms I experienced about 4 years ago.  It took a long time to finally get the diagnosis of Sjogren's.  My experience involved feeling like I have to go and then having a "sluggish" bladder where I had to really push to expel the urine.  I went to a highly recommended urologist who tested me and said he saw nothing abnormal yet it was very clear that I had to really push to empty my bladder.  He gave me some meds to help stimulate the bladder but they really didn't do much for me.  Since then I've had many other symptoms and now I believe it was all related to Sjogren's.  When I have issues with my bladder I know it just another of my "flares" and eventually it passes and something new pops up.  It seems that Sjogren's is just a series of symptoms that you address.

[Carolina]

I have been diagnosed with Interstitial cystitis since an endoscopic examination of my bladder in 2008.

It started with chronic UTI's which I had NEVER had until I was 63!  And then constant pain, the entire gamut as a rebound after the UTI was cleared up.  THEN reinfection.  With IC the bladder is inflamed and more susceptible to infection.

Here are some references.


Interstitial Cystitis described in the New York Times:
http://health.nytimes.com/health/guides/disease/interstitial-cystitis-ic/overview.html

Sjogren's and IC
http://www.ncbi.nlm.nih.gov/pubmed/8350331

Sjogren's and IC
http://www.ichelp.org/page.aspx?pid=327

Interstitial Cystitis
http://www.medicinenet.com/interstitial_cystitis/page3.htm

Cranberry juice irritates IC, btw.

Keep us posted.

Hugs

Elaine

[jazzlover]

I also have Interstitial Cystitis. I would say it's related to Sjogren's, though mine is WAY BETTER since being treated for Lyme disease.

Mine was so bad that I had to retire from teaching. Try teaching while needing to pee every 10 min. I could make it an hour max, but was in misery by 30 min point. I counted how many times I peed in one day and it was 37.

I hope you can find some help for it. Definitely go to these websites to see what others are doing to improve their lives.

www.ichelp.org

www.ic-network.com

[Madison Granny]

I too have bladder problems.  I felt like I had to go all the time.  I couldn't sleep.  I finally went to a Uro who diagnosed me with an overactive bladder.  But with SJS the OAB medicines made my eyes even drier so I had to stop them.  i now have what is called an Interstim.  It's nerve stimulation of the sacral nerve controlling the bladder.  Works quite well.  But IC is possible.  They ruled that out as the cause of mine.  But you do need to find the cause. 

[Katybarstool]

Hi

I have bladder problems too - but I don't have IC. My problem is the struggling to empty. I also hav bowel problems. I had a bladder prolapse repaired in 2009 and it probably needs doing again. My uro-gyny and the bowel surgeon think it is to do with the connective tissue disorder and SJS.

Kathyx

[jazzlover]

I used to joke that I know I don't have a prostate but I think I have prostate problems!

-
And many men have IC and don't know it... THEY think it's their prostate!

[eye2dry]

Hi there.

My daughter was in her 30's when she was diagnosed with interstial cystitis. She had a real bladder infection that was treated with antibiotics but after that she kept having "bladder infection" symptoms even though the urinalysis said the urine was clear-no infection.

After cystoscopy, biopsy, potasium test..then she got her diagnosis. She still has it. It is in the autoimmune family.

She takes Elmiron and Elavil to control her pain, constant urge to pee, spasms, etc..

You may want to see a urologist to see whats going on.
I am sorry you are suffering so much. It's a terrible condition.

eye2dry