No I'd had no surgery before the pain started. It just kinda gradually crept up on me. When I awoke I always felt a strange feeling of 'movement' across the bottom of my stomach - like a fluttering before the pain kicked in. As soon as I got up the pain would go. On hindsight now that it's cured and I know what it was, it was like the narrowed tube was maybe only allowing the urine to pass through gradually and that was what was causing the pain. Only conjecture on my part of course, I don't know for definite!
When you started having this pain in May did you happen to have any kind of surgery right before the pain started?
Yes, you are also the only person I've come across that has had the same issue and I've felt very alone too. Like you I had no infection of the urinary tract.
The stretching of the narrowed tube seems to have helped my pain pretty much. I only had this done last Friday so it's early days yet and I've been told the problem could recur. I also had a colonoscopy last Monday as they weren't sure if pain was coming from my bowel. They found some inflammation and took 4 biopsies but it will take some weeks to get the results from them. I do believe however that my pain was definitely caused by the narrowed tube. I think with the bladder not emptying properly, the urine may be 'backing up' during the night and causing some sort of irritation. They also said my pain could be caused by adhesions from previous abdominal surgeries I had - hysterectomy and incisional hernia operations, however I still think it was bladder pain,
When I had ademyosis I had dreadful pain - especially when passing bowel movements. The pain was like childbirth. Of course I didn't know it was ademyosis until my uterus was removed but the pain was worse when I had my period.
Keep taking your painkillers and ask about the narrowed tube thing. It's strange nothing is showing on your cystoscopies.
I hope you get on OK - keep me posted and take care.
Thank you so much for replying. Your the only person that I've come across that has had the same issue. I've been feeling very alone.
When I get up in the middle of the night I do take half a percocet so I can go back to sleep. Before my surgery I too was taking Tramadol which helped the pain some. Yes the pain does go away during the morning. I've had two cystoscopies and no mention of having a narrowed tube leading into my bladder. Did the stretching hlep your pain completely? When you ademyosis did you have any of these symptoms? What kind of symptoms did you have?
Thank you!
I had this since last May - no endometriosis as I had ademyosis years ago and had total hysterectomy for this. Like you said you can't tell if you've got ademyosis until uterus is removed and biopsied. A Bladder scan showed my bladder wasn't emptying properly and cystoscopy showed a narrowed tube which leads into the bladder. They stretched the tube during cystoscopy which seems to have helped. Like you I was up during the night and I found that when I got up around 3 am or 4 am if I took 2 painkillers (Tramadol/Zandol 100mg) then I got some relief which kept me going until I got up in the morning. Try taking the pain relief during the night when you are up to the toilet - that should help. Did you find like me that when you got up in the morning the pain went away? Ask your urologist to maybe do another cystoscopy and see if you have narrowed tube leading into bladder. Good luck.