I was diagnosed about 5 years ago with what started as dry eyes and mouth and positive rheumatoid factor. I'm also post menopausal. I am sure it is more than just my eyes and mouth that get dry from this, I also have very dry vag with several urinary symptoms. (no discharge and no sores) Is this common with Sjogrens? I do get frequent bladder infections but was also told I have urethritis. I get a lot of pelvic discomfort and pain, not UTI burning pain. My urine only tests positive sometimes and it does clear with antibiotics. Anyway, I just wanted to know if anyone else has this.
Hi and welcome! I was diagnosed with vaginal atrophy, but I had this years before diagnosis. Have your doctors thought about interstitial cystitis? My daughter had frequent symptoms of bladder infections, but did not always test positive. She suffered from age 6 to about 15 when a doctor finally figured it out!
D-Mannose taken daily has stopped my UTIs. I have IC.
Hugs, Elaine
I have just been diagnosed with Sjogren's. I have a history of lingering UTIs (or so I thought) . . . every few years I'd get one, and the pain and inflammation would last for months after the bacteria was gone (sometimes the pain and urgency would last six months or more). It first happened when I was 12 years old.
It looks like this is not uncommon.
Gyne did a cytoscopy and said my bladder looked great, but putting in the catheter was extremely painful. I bet in the last 2 years I have been on antibiotics about 5 or 6 times for a UTI or symtoms of. Never mentioned IC. Other than dry eyes and mouth I really don't feel very educated on Sjogrens. My rheumy that diagnosed me was not that forthcoming.
On the catheder pain, are you small in statue? My daughter is only 5'2 and we make sure to remind them to use a pediatric flange. Either way, I would ask for a pediatric flange if insertion is that painful! Her urologist did a simple test, he poured in a vinegar water solution in to the bladder. She immediately hit the roof which he said was a classic sign of IC. Is he treating you at all for the urgency and pain issues?
Just to let you know, there have been a few threads on this before over the years. I, believe, that you may be suffering from Trigonitis. This is the inflammation of the trigone. The trigone is the minute piece of special mucus tissue that is just above the urethra and also sort of assimilated into the tissue of the urethra as it is the tissue that gives you the signal that you have to empty your bladder.
I first had this when I was 21 years old and it was bloody miserable. I was in nurses training at a well known clinic and they turned out to be the 1 of 2 places in the country that identified this and treated it. The other place was Kansas city. I ended up having to go in to urology every day for 4 days and have my urethra dilated or stretched with larger "sounds" which are metal and made like a catheter shape way and also have the same measurement sequence as a catheter. In other words, they may start with a size 16 or 18 sound and progress to a 32 or 34 sound.
After the urethra is dilated this instilled silver nitrate into my bladder about 75 cc which isn't that much and then placed a steroid/furacin (they don't make these anymore to my knowledge) suppository in my urethra to reduce the swelling and prevent infection. Then I had to hold this for 1 hour. Painful and hard to explain. My mother also suffered from this same ailment and went through the same treatments at times.
Then you leave and wait to expel the silver nitrate which is black and interesting cause when you urinate it also burns some. After this treatment is done the bladder improves. I have had this burning and pain in my bladder off and on for many years and it interrupted by sleep and made my life miserable. I would always eventually go in and do the urine test and it was always negative. Docs would put me on pyridium(kills pain and mades the urine orange and once in a while use macrodantin. Sometimes they put me on another antibiotic cause they didn't know what else to do. They all thought I was nuts.
I had to go about 3 more times and have this done and the last time they used big sounds to dilate and I thought it was worse than having a baby. I could feel the tissue tearing and I bled some. That was my last treatment cause I was afraid they would stretch me so much that I would be unable to hold my urine. When they did cytos on me there was neve anything wrong with my bladder but at times they could see this little area that looked scabby just above the urethra and that was my inflamed trigone. It was like sitting with a hot charcoal in your bladder all the time.
Eventually I started on an antidepressant and the pain and occurrence of these attacks seemed to diminish some. I later read that the medical world thought that there was a problem with some of us regarding our pain interpretation in relation to this problem. They thought this because some women had this problem on scoping but never had the pain. Then I was diagnosed with all my autoimmune diseases including the Sjogrens and started on IVIG and I haven't had a spell since. Also, I have been on prednisone for many years.
So, you aren't crazy and I would find a urologist who likes to tinker with autoimmune disease and see if he can help with this. Most doctors have no clue cause women just get put on antibiotics over the years and often don't have the urine test. Once a person has a bladder infection the docs are quick to jump on the bandwagon and just assume that there is another bladder infection. With me, I am 74 years old and have had 3 bladder infections in my life and the last one was in the 70's.
Hope this info helps you cause I went through heck and high water over about 25 years learning about this stuff. Good luck.. Irish
this looks very much like my vulvodynia. i had it for years , not many positive tests but terrible pain sometimes even to seat on a chair.they cured it with some local hormones, local tens and a medicine for vaginal neuropathy
Irish, had to head to the walk in clinic today and the doc told me exactly what you said. It is the Trigone that is inflammed and painful. Said it is common when there is no estrogen. I started on vag estrogen a couple months ago. Recommended I ask about using Detrol as well as seeing a urologist. So he gave me antibiotics and more pyridium. I see my reg. doc next week.
I am glad that your doctor knew what it was. Interesting what he used to treat it. The suppository that they used years ago isn't made anymore except at the clinic where I was treated. They compound their own urethral suppositories. They really do the trick. Good luck. Irish