I’m at my wits end. My quality of life has become miserable. Pain, discomfort, almost non-stop frequent urination, that also triggers the urge to defecate regularly, ultra sensitivity in my penis , especially the head, blood and matter that come often after the normal urine flow, and a great degree of difficulty to sleep from the accompanying symptoms – even sitting can trigger the urge to urinate. I can get a short term relief from a hot bath, but that seems to be losing its effect as time goes by. I live with a urinal always close at hand and when I use the toilet my stream is erratic and unpredictable.
The second urologist I’ve seen since July, has treated it with meds and did a green light laser trimming of the prostate, to rule out that it was not a prostate blockage, and the colonoscopy shows my bladder holds such little fluid, but does always empty. It just got worse and he then looked at it as a bladder irritation, and did two other courses of meds including Vesicare and it just got worse.The colonoscopy showed my bladder holds virtually no urine – less than one fifth a normal male. I also was treated for yeast twice in this period. The first urologist I saw back in April this year had a CAT scan that revealed a large kidney stone and only wanted to treat that, so it made no sense and hence I saw the second doctor who also concurred with me. Also, defecating has become strained and accompanies irritation to the penis, and I see blood and bloody matter in the urine, like clots or something and I’ve addressed this matter, but the doctor still sluffs it off as from the laser surgery which was done almost five months back, and is now more frequently occurring.
After many visits and med treatments this urologist agreed we should try an InterStim trial, and I was prepped to do that Dec. 5th, but because they did a phone pre-op rather than at the hospital they overlooked that I was a candidate for MRSA and VRE. They confirmed no VRE at the time, but since they’d swabbed my nostrils already they postponed the surgery till I came back to get checked for that, and it was positive , so surgery was postponed. That aggravation caused me to write a detailed letter to the management of the urology clinic, and after conferring with her we agreed to try another urologist at their clinic, who I’ve seen once now.
To put it mildly , since my first visit with this this urologist in July the urination frequency, has increased and is always uncomfortable to pee, and and the stream is eradicate. I live with varying degrees of pain and discomfort , from mild to breathtaking, and I am a constant captive of the bathroom and a urinal by my bedside . The doctor informed me the prostate surgery trimming went well, but has ruled that out as the basis of my problem. My quality of life now is zilch.
Don’t get me wrong, because I believe the doctor has acted quite professionally. He’s been quite aware that my primary concern is the lack of quality of life I’m now experiencing, and he acted conservatively, trying every pharmacy treatment available, unfortunately none doing the job. Which led him to the next option of the InterStim trial.
One thing that I think the doctor failed was not paying as much attention as I possibly felt needed to be addressed is the severity of pain and frequency which has only gotten worse over the time in his care. Every urination is uncomfortable and I’ve told him that when I really push hard to empty my my bladder is when I get serious nerve and pain aggravation that largely emanates as stings in my penis and privates, and almost always there is some blood and matter that follows. The pain becomes harder and harder to subside as the days go by. Also, I see many of these refuse-like bloody looking pieces along with this, and r occurrence that many times it causes a response to have to defecate. My sleep has been seriously disrupted, and I get up and down and pee into a bedside urinal throughout the night, not to mention the day as well. I can pee as many as 3-4-5, even more, times per hour. One visit I directly asked the doctor if it might be some kind of bladder cancer and at first he said I don’t think so, then matter of factly stated it wasn’t, but as far as I know there has been no testing to verify this. It scares me to see more blood and refuse now than even shortly after the laser surgery of the prostate, although he more or less wrote this off to the healing from that prostate trimming.
To have heard I still carried MRSA was another emotional setback being I barely survived a septic shock in 2013 that had me hospitalized for months and shut my kidneys down. I was on dialysis at the hospital and a year on home peritoneal dialysis at home, but fortunately my kidneys recovered enough to be taken off and am considered chronic renal rather than end stage renal.
So my question is how would you proceed from here given this information. Thank you.
