Interstitial Cystitis

[chelle2u]

Hi everyone,

I would really like to find others who do not experience the typical urgency/frequency with IC. I was diagnosed with mild IC and I can't imagine having more complications added to the pain that can persist at times. Changing diet has helped a lot and I know that I have to stick to it. It's hard though.

I noticed there are not very many replies to the posts but if anyone else has experienced no urgency/freq in the beginning but then wound up with those complications, I would love to hear your story or find the link to what you previously wrote.

My docs were assuming that I had endometriosis pain and possibly issues with an ovary. I had experienced excessive bleeding during my cycle and then was told it was probably adenomyosis and was put on seasonique. Seasonique did help the bleeding and the pain of what I think was the IC pain too at times. If I hadn't had hematuria in my blood I don't know if I would have pushed to find the answer for the aches in my back, legs, and tummy area. I just thought it was all cyclical as it would get worse around that time. When I spotted after taking seasonique it would get worse as well even if I never had a real period (just shows you that IC is related to the hormones for sure).

My doc said she'd bet I didn't have IC from what I described but did the testing anyways. She was shocked...I wasn't. I wonder if many times people like me aren't diagnosed because they don't have the urgency /frequency. That's why I'm so curious to hear others who have the same/similar stories.

Sorry for rambling...
chelle

[ce36]

Did they do a laparoscopy on you to truly r/o endometriosis, adhesions and endometriomas. Sometimes the endometriomas can adhere or grow on the bladder causing pain.

Laparoscopy and hyesteroscopy is the only way to truly see through the scopes and if they're there, they can remove them. I had this done.