Living with it

My urologist evaluated my pelvic floor muscles during an exam and said they were too overdeveloped (think like your fist constantly clenched). She suggested I see a physiotherapist specializing in the pelvic floor. I went to my first appointment and she talked about how the fact my pelvic floor muscles are always tense and engaged could be radiating pain into other parts of my pelvis, like my abdomen and bladder. So my plan is to work with her and see if improving that area improves the pain I feel most days down there. In fact when I cast my mind to my pelvic muscles, most of the time now I do noticed that they are clenched, no matter if I’m just sitting watching tv.

It’s possible, from my conversation with the physiotherapist, that the frequency and urges my be psychosomatic. Meaning that I’ve sort of trained my brain to feel like I need to go all the time even when my bladder isn’t full. More to explore here.

Like you I had frequent UTIs my whole life (validated with urine test, responded to cipro), from when I was about 7 until I got married. After that I thought once in awhile I had a UTI but I always tested negative on the urine test, that’s when my doctor floated the potential of IC. Over the years the bladder pain has gotten more frequent to where I have it almost every day. The frequency and urges too.

I haven’t had a cytoscopy and I don’t see the point cause if I have IC, I have it and what can I do but watch my diet. In the meantime I’m trying to rule out other causes/impacts. I’ve had an MRI and ultrasounds and “bladder appears normal” from the outside.

Sigh, it’s a journey.

/r/Interstitialcystitis Thread