Interstitial Cystitis but no bladder inflammation?

[ticked]

Is it possible to have IC if the cystocopy showed no inflammation inside the bladder?  

I have pressure pain in what I think is my ureters and I have to rush to get to a toilet. Once I am there I cant go sometimes and the pain is so intense.  I urination around 40 times a day and around 6 times before I fall asleep and once during the night. I have no infections and never have. I feel there is more when I finally go but it wont come out. I have to walk around and come back 5 mins later.

I also have Stage IV endometriosis which I know go hand in hand.  I had endo on my bladder ureters etc.. is it possible that there is scar tissue causing this or could this be IC?

[ticked]

Thank you. It has been a struggle for sure and a long journey. Your kind words are very thoughtful. :)

[Itsmenoodlehead]

Hey girl my I'm noodlehead, I'm new here. I just wanted to say hi, "Hi". I was reading your post and it made me feel really bad for you. I myself have IC. I've had it for six years and it's been bad. Anyway, just wanted to say I'm sorry for your situation and I hope things continue to get better. Luv and gentle hugs,

Noodlehead

[ticked]

Thanks.

I had surgery this last Feb so this post is a little old however my ureter was stuck to the bladder and the other is still embedded into the pelvic wall with my right ovary, it was too complicated for this surgeon to do and I am working on having out of Country surgery at the Endometriosis Centre in Atlanta. Just in case someone reads this I also had carbon residue on the bladder flap from my surgery in 2007 from the use of laser. I do have to say I feel 70% better which is good because at one point I was peeing 60x day as well as peeing myself with no sensation to go or the pain would be so severe because of urethral spasms. UGH so glad it feels a bit better and I am now going around 20x+ a day which could be worse. The pain is still there same with the intensity, urgency and not fully voiding.

[jrae11]

I had Endometria inside bladder in back in 1984.  I would like to suggest that you have DR check you again for the Endometriosis.  As you may already know, it's like a cancer but is not cancer...meaning if it can't be cut out then you don't get rid of it. I had 5 surgeries for this same reason in 1984 to 1985. Also when you Menstruate it's like fertilizing the Endometriosis so if you still have your ovaries that could also be a problem. After I had 3 bladder surgeries I then had to have another bladder surgery with a complete hysterectomy. They cut a place bout the size of a 50 cent piece and put in a mesh/sling in my bladder.  I also suggest you find a DR with this kind of experience.

[ticked]

Thanks so much.

[S. Kaul, MD]

Hi there!

Yes, it is still possible to have IC even in the absence of clearly visible inflammation on cystoscopy. Endometriosis would normally support IC diagnosis however for a diagnosis of IC all other possibilities for the symptoms such as obstruction by scar formation, neuro-muscular issues, other potential causes of infection/ inflammation etc may need to be considered and ruled out as well. It would be best to discuss the situation in detail with your urologist after a detailed evaluation.
Hope this information is helpful.

Take care!