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I have been suffering this for 10 years now. Three colonoscopies, 2 CT scans, a swallowed a camera pill that took a video throughout my gastro tract, bladder scoping, 4 gastroenterologists, 3 urologists, and 3 or 4 primary care physicians were all utilized.
I've gone on the FODMAP diet, tried acupuncture and electro shock therapy too. My bladder scoping resulted in a bad urinary tract infection the next day, so they gave me Cipro, a strong antibiotic.
The doctor even prescribed 14 days instead of 10 since the infection was bad. I hoped the antibiotic would stop some sort of undetected infection also, but it didn't.
Nobody can pinpoint the problem.
I am now 71 and haven't slept a whole night for over 10 years. I let several years go by thinking it was an enlarged prostate but eventually realized that getting up to urinate didn't stop the nightly pain, and I didn't have pain during the day.
Yes, I thought perhaps I was to busy to notice pain, and have paid particular attention to that possibility. But when I stop and think about it during the day, it is not there. I even lay down in the quietness of night at bedtime, close my eyes and ask myself if it is there, but it is not. It starts about 1-3 hours into my sleep.
That's when the pain awakens me, then about every 2-3 hours thereafter. I never awake feeling refreshed, the pain always awakens me when I have just enough sleep that I cannot go back to sleep.
Tylenol buys me about an extra hour, and I sometimes take it. But the pain is usually worse after that additional hour. And a certain non-THC CBD strain helped me sleep. But I quit that early on as it had a side effect worse than the pain.
Doctors have prescribed certain pain and sleep medications. Valium seemed to work well but the doctors, rightfully so, would not let me go long term with it.
I think I may be down to interstitial cystitis (aka painful bladder syndrome) but I have no other symptoms. My urologist doesn't want to medicate for that until I try flomax and prostate reduction meds for a few months first. I'm a few weeks into that with no relief, but we will see.
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