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I have had a number of strange symptoms now for quite some time which I am starting to think could be intestinal cystitis. It all started when about this time last year I started getting urinary frequency, needing to go for a wee very often (around 8-9 times a day) and when I needed to go it would feel urgent and as if my urethra was spasming, pee was about to leak? I would have no blood, no pain or incontinence.
Around Christmas time I started noticing a deep ache in my lower mid-right pelvic region if I was drinking anything (water, squash etc). It is as if I could feel my bladder filling up but I still don't know if the pain is coming directly from my bladder. I would also notice frequency and needing to go for a wee quite urgently like before but when I would go there would not be very much there. Once again I would have no blood or incontinence. I mentioned to my GP in February and they thought I had overactive bladder so prescribed me with Neditol for 4 weeks which didn't do a lot for me. I then tried Vesicare for 4 weeks, which again..didn't do much for me either. The last couple of months, I have also had some rectal issues where I was experiencing intense aching and pain in my rectal area. I saw a colorectal consultant privately and he said I have something called proctalgia fugix with possible levator ani syndrome. I mentioned the pelvic ache/urinary frequency as well and he didn't seem too concerned about it so I guess he doesn't think they are linked.
I feel like I'm going crazy, I've had a bladder ultrasound in October which came back normal, urine samples are always fine, and pelvic scan in March was normal as well. I think the doctors think I'm a hypochondriac but I'm really not I just want answers and to feel normal again. My urinary symptoms disappeared for about 6 weeks but have come back again. I am still getting the deep pelvic ache which feels like a throbbing pain, especially when I am drinking water, and when I pass urine it feels like there will be a lot, but there isn't much there, (sometimes only 100ml). GP has finally referred me to Urology at the hospital but there is a long waiting list and I am really worried this could be IC as from my research it doesn't look like it could be anything else. I haven't mentioned this to my GP as I know they don't like it when you try and self-diagnose and I feel that they already think I am dramatic and overly anxious 😦
Sorry about the long message I just feel like I have to vent and would really like to hear if anyone's ever experienced anything similar? Half of me thinks this could just be a pelvic floor problem (I have been referred to physio for myofascial stretch but I am waiting for this), and the other half thinks it could be IC. My GP seems to have no idea what the problem is so I feel completely stuck 😦
Thank you for reading,
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