Post PAE experience

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Hi All,

I'm a 56 year old Aussie and just wanted to share my experience of PAE. I've had a pretty rapidly enlarging prostate for about 5 years. It's a gene I guess. My Dad had his first TURP in his late 50s and then after his prostate enlarged again, another in his late 60s. My brother, who has just turned 60 had a TURP a couple of years ago. A few cousins have also had TURPs. No prostate cancer in the family but loads of BPH. My PSA has always been very low. Anyway, as I say, my prostate went from 40cc to 100cc in just a few years, with a big median lobe. Managed it pretty well on Tamsulosin (Flomax) and by not drinking fluids after dark for about the last 3 years. Flomax and I got on well. No side effects at all and importantly no sexual side effects. But, if I missed a pill the deterioration in my stream was immediate. Anyway, something changed earlier this year. I guess it just reached a tipping point. A few times if I woke from a deep sleep in the morning with a very full bladder I was struggling to produce any stream at all. Took ages to empty. I've studiously avoided letting my bladder get too full for the last few years because that was when I had the most difficulty. But I had obviously reached a point where more intervention was necessary. Anyway, my GP was onboard with PAE because he has an enlarged prostate himself and had done loads of research. Because of my age and enthusiasm for not putting my sex life at risk, he referred me to a terrific Urologist who has been part of the trials of PAE running at the Wesley Hospital in Brisbane. He in turn referred me to the Interventional Radiologist, also a lovely fella. He said they'd done 300 PAEs with good effect (equal in terms of symptomatic relief though not quite as long lasting as TURP). Had a CT angiogram and Ultrasound as work up and then my PAE was done a month ago. Had a bit of a hiccup on the first night. The Radiologist had warned me that some men develop pretty bad pain, a kind of post PAE pain syndrome as the prostate tissue is losing its blood supply. I was one of them. A number of things worked against me. Firstly, I had been given Midazolam to keep me happy and compliant during the procedure. It has a pretty amazing effect on me. Apparently I give the impression of listening and understanding after I've had it, but really I can't remember anything. There's just a big gap in my life from that day. I should have had some Endone for pain before I left the hospital but didn't. Apparently I said I was fine!!! We live out in the country a long way from the hospital. By the time we got home my wife says I was suddenly off my tree with pain. Kept trying to pee but couldn't. My wife gave me Endone but it was too late. I just threw it up. Ended up sucking on the green whistle and a trip back to the hospital by ambulance in the wee hours because my wife couldn't even get me in the car. I remember none of it. Apparently it took 2 shots of morphine for me to settle. After that all I remember is waking up at 7am in the ward at the hospital as the breakfast trolley was wheeled into my room. I felt fine and apart from a bit of burning when I took a leak on that first day, I've been fine ever since. My darling girl was far more traumatised by the experience than I was. Hindsight's a wonderful thing. I should have had some Endone on suspicion and we should have stayed overnight close to the hospital but because of the COVID-19 situation we were keen to get home. Anyway, not a month later and I would do it all again. Slowly the strength of my stream is returning. I seem to have a better capacity to hold my bladder when it's full. Last night was the first time I haven't had to pee in the middle of the night for years. I woke with a roaring horn on the second morning post procedure which was wonderfully reassuring. Erections are regular and unchanged. Waited for a couple of weeks but sex and orgasms are great. Completely unchanged. The only difference is that my semen is copious, watery and and quite brown. So, after this long story I have 2 questions for those who've trod this path before. When will the brown semen change? I'm not worried about that. I'd put up with it forever, just interested. Secondly what has been the experience of most so far as how long it takes for the post-PAE bladder capacity/urination situation to be as good as its going to be? Thanks for listening.

Neil

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  • Posted

    Your prostate will keep shrinking and around six months post op that's about as good as it gets. In my case, the improvement was only about 20% from before the PAE, and after a year I was right back to where I started from - maybe worse. So, I had a bipolar TURP and that worked much better. It's been a year since that operation and I am still OK. I think the TURP was easier than the PAE - I was completely out, and went home right away. I did have a catheter in for 3 days - but once that was out my flow was much stronger and recovery was fairly easy. Hope all works well for you as the weeks and months progress.

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    • Posted

      Tom ,

      there is no one size fits all. I don't know about your size of the prostate initially, but will never advise anybody with with prostate greater than 100 cc to go for TURP. Risk is too high for complications. AUA doesn't recommend TURP for prostate greater than 70 cc. It should be robotic SPE or suprapubic prostatectomy, or something else based on a laser surgery. All that said, there are urologists who perform bipolar TURP on patients with large prostates successfully and routinely. There are few of them very experienced in TURP technique. Still, with age and size sexual effects and chances of incontinence grow disproportionally. Up to 30-35%. That's my opinion based on recent reviews and many stories on this forum.

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  • Posted

    I had brownish semen after my first biopsy many years ago and was told that it was old blood. It lasted for several weeks. Other wise you seem to have had a good result after your initial trouble.

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  • Posted

    Neil,

    I went through a similar experience roughly 26 months ago. I'm quite older , I had my PAE at age 70.. It was very painful first few days, even two weeks with gradual improvement over time. It became wonderful at 6 months, when I had an impression that I rolled back at least 20 years in health of my LUT. I haven't experienced any brownish sperm but it could be individual. You are still in the mode of dying and healing tissue. Unfortunately, the effects of PAE will start to deteriorate in your and mine case of large prostates in 18-24 months. I recently mad a 3T MRI and TRUS. Both show the same results, despite some cavities inside, prostate has grown back to 130 cc (from 110 cc 2 years ago). I start to wake up at least once per night after 4-5 hours, which bearable. The stream is not as strong as it used to bu 6 months after PAE. It's still much better than last 3-4 years before PAE. Al the leaking stopped, I can hold voluntarily for 3-4 hours on average. No strong urges as it used to be. I probably have the same propensity for a fast growth of my prostate, as my Dad had. Don't plan for TURP which is too risky at my age of 72.5 and size of the prostate. Will consider Tullium laser enucleation (TULEP) which can give complications but less likely than TURP. Don't see any other reasonable options with my size. My PSA dropped to 1.16 ng/dL and stays around 1,5 ng/dL.. Great morning erections and strong orgasms.

    Good luck with your improving results. Enjoy them meantime. They are not forever, hough, given large central lobe. That's my case as well.

    Best. Gene

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  • Posted

    My own circumstances track very closely to yours, with the exception of median lobe problem. If our situations continue to track you can expect improvement, which in my case lasted almost 5 years. At peak effectiveness I was down to once per night, now it varies from twice to 4+, depending on circumstances.

    The big change is how the urether shuts down so tightly at night, making it very difficult for the bladder to force urine past the narrowing. During the day it again varies, the biggest frustration, but on the whole is not a problem. The greatest fear is full retention, which can't be far off one of these nights. It has prompted me to investigate alternatives and I have concluded and begun the journey towards Aquablation. I'm hoping this will happen in the Autumn but Covid-19 is likely to have a bigger say in that.

    PAE will buy you some time but is unlikely to be a cure. That in itself is valuable, as more research reveals a greater understanding of how to approach this ubiquitous all consuming problem for older men. Given more of us are living longer the problem is growing and becoming the most endured chronic ailment affecting us. It would be very encouraging to have a single once and for all solution but I suspect that there will be a range of interventions in series that match the individual circumstances.

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  • Posted

    Versed has the effect of stopping creation of new memories while it is administered...basically causes amnesia for that period of time. It's odd to think that you were sedated but conscious, may have been aware of what was being done, but have no memory of anything after it occurs. Last time I was given it during a procedure they injected something else into my IV before being rolled back to the OR that made me feel intoxicated but I don't remember anything after they had me move from the gurney to the table. I suppose that was when they injected the Versed.

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