HELP I'M DESPERATE - UROLIFT FAIL AND MORE

I have posted here before when I first had my surgery. Around 3 years ago I had a UROLIFT and bladder Neck incision at the same time. This is after getting a bad case of Prostatitis and having frequency attacks, maybe 3-4 times in a an hour every few weeks. I had ZERO urgency or problems outside of this, no retention, flow was decent. My URO at the time suggested UROLIFT as I was young (53) and my prostate was around 60 in size. He said I would keep getting these attacks otherwise and that the side effects were nothing to worry about, just like when I had the biopsy, maybe a little more intense. I thought well, no cutting, and a high safety profile, if I can get better sleep, no more attacks or prostatitis episodes why not. It all sound so easy and beneficial.

I wake up with a catheter and ps flying everywhere all over the bed, the nurses keep asking ME why is my bed wet and cleaned it a couple of times, I was lying in a pool of ps. By 1pm the next day I have an intense pain in my lower abdomen, pain level, easy 15 out of 10, I was in agony, Nurses said I had spasm and gave me some anti spasm medicine, I said it doesn’t feel like that, it is pain. By 4pm, the pain is worse, they give me some strong painkiller, makes no difference, by 6pm, I beg them for something else and they say they can’t give me anything more. I tell my wife to go home as she sat by myside all day, by 8pm, I reach down and feel my stomach it is hard as a rock, like tapping a table, I tell the nurses SOMETHING IS WRONG, come and feel this, they just stare at me, 2 of them and do nothing, don’t even come to feel. At 11pm, I am in agony in a pool of p**s still, there is a change over of nurses and the new nurses asks me again, why is my bed wet, she looks at the bag and says,”you have more fluid going into you, then coming out” might have blood clots, she does an ultrasound, and bang, she unplugs me and manually removes them all and cleans me um, Finally in a dry bed with catheter working properly and pain gone.

Later that day they take out catheter, I have a violent urges to pee, I can barely hold it from bed to toilet in the same room, just a few steps away, I go every 15 mins and I can barely get home, I ask the URO and he just says, oh bit of irritation.

4 weeks post surgery, and the urgency and frequency is worse than ever, I am p*****g myself in public and start wearing a pad. The nurse gives me pelvic floors to do but after a couple weeks nothing, Dr puts me on Betmiga 25 mg and a few week late no improvement. URO tells me it’s because I was blocked up for so long and the bladder muscle is enlarged. If that’s true it should have gone back to normal by now, he also said I would keep getting better.

During this time every now and then I would wake up and have a completely normal day or 2, then it would start again and cycle repeats. By 8 weeks it got so bad, he gave me botox and I still had to take betmiga and go off all caffeine etc. It improved to some level, but still had many bad urge days. It improved after a few months but at the 6 month point, it got violent again, so onto a 2nd round of Botox.

The 2nd round wasn’t working after 2 months, so I went and had acupuncture, URO said I had CYSTITIS and that is why I had pain, but I never said to him I have pain and I don’t have pain.

I have had times of a few good weeks in a row, but mostly it is a few bad days a week, sometimes, for 2 weeks straight and sometimes a few good weeks in a row. BUT the strong URGES are always there, I have no build up and at times no matter how hard I hold it still, leaks out, this is not too often though, thankfully. This discomfort is horrible.

I have been in hospital on a drip again for prostatitis. The surgery did nothing for me, it just gave me a condition I never had before, I am so crushed, my quality of life has gone down a lot. I recently found out, as a lot of urologist who worked with my UROLOGIST left the practice, and the reason was “they go sick of him performing unnecessary operations on people, so they broke away” when I heard that I was crushed.

My questions are, would the blood clot incident have caused this?

More likely and hopefully is that my body does not want these implants and they keep irritating the bladder somehow. I want this s**t out of my body, I have an appointment with a new UROLOGIST August 16th. I am in the middle of some pretty bad days at the moment (3 years later)

I would rather be where I was before this surgery, waking once a night, frequency attack every few weeks. BUT outside of that 100% bladder control at all other times, and p*****g fine and living my life fine, I want my life back, not even sure if it is possible. I read on here someone had their UROLIFT removed and had GL and they said the urgency stopped! This give me some hope.

Anything information anyone can offer is much appreciated

Thanks

Nick

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