IC with SS
Posted , 6 users are following.
Hello, going to the Urologist this Friday. Been dealing with horrid UTI's since April. No UTI, kidney or bladder infection my last 2 tests and Dr. thinks possible Intestinal Cystitis. Does anyone have this along with SS? If so, can you tell me what it's like or was the test painful? Basically I am going to the bathroom 15-30 times a day. Pain in pelvic area, side and lower back. No blood, no painful urination. Feels totally diff than a regular UTI. Big time urgency. Just so frustaratung! Uhg!! Looking forward to any feedback 
Thank you!
0 likes, 8 replies
Megheart tj268
Posted
Do you mean Intestinal Cystitis or Interstitial Cystitis?
tj268 Megheart
Posted
lily65668 tj268
Posted
Erm... I think you'll find it's interstitial cystitis, TJ. Google it. There've been a number of SS sufferers on these boards that have reported problems with it. It's an autoimmune condition, so it could well be an extension of your SS.
So sorry to hear you're suffering from yet another symptom.
tj268 lily65668
Posted
I am having a CT scan Monday morning. The physician's asst was horrid. Told me since no UTI (which I told him i didn't have lol) to drink water and go for a walk. UMMMM, i am in enough pain not to walk plus it is super hot which flares my hidradenitis and he goes "OH". what a dumass. He also said urinitaing over 20x a day was due to diabetes and my diabetic dr about broke at laughing!! Let's see, then while sitting in the chair next to him as he talked-he literally scared me to death as he started poking my mid section saying does this hurt. YUP total disater and I a reporting him.
We ALL have enough problems w/out dumb people thinking they no everything and yet no nothing.
brenwag68 tj268
Posted
Hi tj,
when you go to the bathroom, are you actually urinating or do you just have the feeling you have to go? I feel an urgency to urinate (as well as have a bm) all the time but rarely do I go. My doctor says it is due to the SS disease. I do not go because mt lack of fluid due to the SS. I asked this to see if you are actually going or not. SS depletes your fluid, which can cause infections, like bladder (uti's) (I get them all the time) ... take care 😊
frustrated61 brenwag68
Posted
Hi Bren ~
My husband and I were just talking about the fact that I keep getting the sensation of having to go and I end up just sittiing and/or just going a tinkle. ;P Anyway, I didn't realize SS could also cause this. I know it can cause many things but this is a new one for me. Good to know!
Best wishes,
Frustrated
brenwag68 frustrated61
Posted
Hi frustrated...
i thought I was getting infections all the time because every time I felt like I had to "pee" nothing would come out or I would just "tinkle" as you said but after my doc checked me, he came to the conclusion that it was my SS & lack of fluid, I have a lot of problems due to SS & the lack of fluid. (Eyes, mouth, heart, bladder, stomach, etc) yeah SS is a real bummer... you take care😊
aitarg35939 tj268
Posted
Hi TJ
I'm curious about 2 things: have you had abdominal surgeries, and have you made records of all fluid intake/output?