Turp operation or laser ?or leave alone?
Posted , 93 users are following.
Hello there I am 59 years old, I have been diagnosed with bph for several. Years now , psa ok around 2.5 checked every year, symptoms getting worse, peeing several times during the night , also severe retention if leave it too long when need to go .do not leak! (Yet) and would appreciate feedback from others who have had the procedure ( good and bad) The alfuziin 10 mg tablets seem to make little difference, and wondering whether to go ahead or carry on.
6 likes, 975 replies
sdporter999
Posted
Bladder spasms are not uncommon after TURP. Basically it's like cramping and mostly it occurs when you're emptying your bladder (at the end of having a pee). They don't last long ... in my case only about 10-20 seconds each time I went to the loo (not painful, just briefly uncomfortable). The surgeon explained to me well before I had my procedure that the bladder will need time to rehabilitate after TURP. I didn't really appreciate what he meant until afterwards. Basically, the bladder has become accustomed over the years to pushing urine through an obstruction. After the obstruction has been cleared post TURP, the bladder still wants to try forcing urine out and needs time to adjust to the new and improved situation.
From all the forums I have been on, some men just seem to fly through the whole thing with little trouble afterwards ... others have a longer recovery period dealing with things like frequency, urgency and spasms ... my surgeon told me when I had my followup visit last week that I'm just one of those blokes who takes a bit longer. In fact, today has been my best day since the operation. The frequency and urgency are finally starting to subside and it's great to pee like an 18 year old again. I feel like I'm nearly back to normal. Best wishes, whatever way you decide to go. Shane.
bob120
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I was in your position about 2 years ago and had the greenlight laser xps. As sdporter said, many people sail through the various turp procedures but some do not. In my case The laser results were mixed. It did improve my getting up at night or day time frequency by about 50%. I still get up 2 or 3 times every night and still go every couple of hours during the day. Previously it was getting up 5 to 6 times a night and going every 45 minutes to an hour. The only thing it did address satisfactorily was my retention and inability to urinate (mostly during the night). SInce that was the issue that bothered and worried me the most, I'd say the laser was a qualified success. ABout 18 months after the laser I had unexplained bleeding and went back into surgery. This time my urologist removed bladder stones and did a resection (widening) of the bladder neck and cauterized three bleeders on my prostate, urethra, and bladder neck. That was a couple of months ago and my results seem much better than I got from the laser, so possibly my bladder neck and stones may have more responsible for my symptoms than the enlarged prostate.
Prost63 bob120
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bob120 Prost63
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RonTexan bob120
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Camster bob120
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bob120 Camster
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I don't think it's the type of instrument used per se, but how the surgeon uses it. All the turp procedures either cut or burn away the prostatic urethra and prostate tissue. That is the area where ejaculate enters. Depending on how they cut around the duct where the ejaculate enters, it will then either continue down the urethra and out, or shoot up into the bladder, which is retro-ejaculation. It also may have to do with a person's plumbing. My uro said if I didn't have retro with the flomax (I didn't) he would preserve a ledge of prostate tissue above the ejaculate duct which would deflect the ejaculate down and out rather than up into the bladder. This is what he did, but it took a special effort on his part to do that. I'm guessing many surgeons don't make an effort to preserve the downward path of the ejaculate during the surgery and/or a persons plumbing is not conducive to it.
Bob
bob120
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For the past 4 months I've had unexplained nocturnal polyuria about one night in four. Most nights I only get up 3-4 times voiding about a half a liter into my bedside urinal, and can get right back to sleep. But about one night in four, I am up 15 or more times voiding more than 2-1/2 liters into my bedside urinal, getting up every half hour or so until 8AM. So far none of my doctors has a clue. I'd gladly exchange my nocturnal polyuria for retro if I could get a decent sleep every night. And I'm sure people with worse problems would gladly exchange my condition for theirs. Seems like there is always going to be something.
Regards,
Bob
Camster bob120
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I am using some alternative medicine stuff for help. There are some things that do have some credibility and not bogus. There may or may not be something for your nocturnal polyuria issue. I'm open-minded for anything with healing capability. Again, thanks for your time.
jimjames bob120
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Hi Bob,
I'm assuming that with 2.5 liters at night, you're not urinating much during the day?
I also had what could be termed a milder case of nocturnal polyuria, and tried a bunch of different stuff. Sometimes hard to say what worked and what didn't, but pretty much got it down now to having my last void before bedtime (it's a complete void because I self cath) and my next void anytime between 5-9am.
I'm sure the self-cathing helps a lot since I can be guaranteed a complete void before bedtime. Do you know if you still have a PVR or has that been resolved with the greenlight?
One of the things that seemed to help me was watching fluid intake while at the same time using urine dipsticks to make sure I was not becoming dehydrated. Some days my total fluid intake is just a couple of cups of coffee and a beer at dinner. I think this is helped by my diet which is relatively low in protein and fat, and very low in sodium. I notice that when I have anything high in sodium (slice of pizza for example) my thirst increases significantly and I take down more fluids.
The other thing I think that has helped is exercise. Something that gets your heart pumped up like a stationery bicycle, stairmaster, etc. After a really good workout, I notice I void more often naturally during the day with more volume.
Lastly, while I never tried them, I have heard that wearing compression stockings during the day might help as well as a daytime nap.
And, of course, there are a few drugs that are aimed at noctural polyuria if things don't get better on their own.
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Congrads on skipping retro on your greenlight. I read in one of your earlier posts that your surgeon made an extra effort in that regard. You also mentioned that he asked you if you had retro on Flomax. Wondering how the two might be related. In other words, would the flap he did for you be successful on someone who had retro on Flomax?
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Lastly, and unrelated, I think you responded to an earlier complaint/suggestion of mine regarding the confusing and unorthodox way these posts are arranged in the forum. I started a thread in the "Chatroom" on this topic, and if you or anyone else are also bothered by the way the posts are organized, you might want to read my post and comment. Hopefully, this thread will take you there, but if not, just go to "chatroom" and you should be able to find it under the title "Great forum. Very confusing posting structure".
https://patient.info/forums/discuss/great-fourm-very-confusing-posting-structure--338031
Hope things get better for you.
-- Jim
bob120 jimjames
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Thanks for taking the time to list all the possible things that could affect my urine output. Unfortunately I've considered nearly all of them. A couple of weeks ago I did an 11 day journal measuring all input and output. My input averaged about 2.4 liters per day. It ranged from 1800 to 2800ml during the 11 days. I think about a liter gets used up in respiration and digestion. During the day I voided any where from 800 to 1200 ml. I generally void less the day after an all nighter (I guess my body is dehydrated after). I had my PVR tested last month by ultrasound. My PVR was just 7cc so I empty completely. I don't have unusual thirst. I haven't seen any direct effect from what I eat or drink on good nights vs bad nights. I exercise the same every day, 5-1/2 minutes on an 11 degree incline manual treadmill before dinner. I have a whiskey and plain seltzer every night with dinner. I have 2-3 cups of coffee in the morning. The rest of the day is generally three 16oz bottles of plain water.
The way this is working is that anwhere from 1 to 6 nights in a row will be good. (By good i mean getting anywhere from zero to 6 times and getting right back to sleep). Then for no reason I get a bad night, up more than 15 times, voiding 2-12 liters or so. The longest I have gone without a bad night since Sept. was 10 days, the second longest was 6 days. The most bad nights I have had in a row was every other night, 7 out of 14 days.
Last week I took all sorts of blood tests and urine tests. Am waiting for the results. No way to know yet if this is an over active bladder issue (OAB-whatever that is) or a hormone problem dumping urine, or my heart telling the body to dump water. I'm on no meds of any kind. But if something works I'd take it. I think I'd take heroin if it worked-but I'd have to move to Portugal to stay legal. I had a problem in the bast with OAB medecine. Side effects were much worse than the OAB. Only other symptom is that on nights I have this condition I feel a fluttering in my bladder. It may just be the bladder muscles being overworked.
Regarding your question on retro and flomax. My uro said "if you didn't get retro from flomax, you won't get it from the surgery. My patients usually don't get retro.." and went on to explain why. I'm just guessing that if flomax causes retro, maybe your path out is somehow more crooked, or maybe the ejaculate is less forceful. So if you can ejaculate with flomax, then your ejaculate stream is stronger, and his procedure just provides a path for it to continue taking downwards.
I guess if you don't get a reply from the mods, they have no intention to change the order of the posts. One thing that I use is the browser find command to look for a particular name.
Thanks again for your reply.
Bob
bob120
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bob120 Camster
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From what I have read on another site devoted to the Gat Goren method of PAE, (google gat goren method healingwell) an enlarged median lobe does not respond to PAE. As one of the other posters in this thread mentioned, his problem was due to the bladder neck. I had a GL laser 2-1/2 years ago but still had problems urinating (felt like I was peeing through a broken crooked pipe) until I had the bladder neck resection a year ago. I still have an enlarged median lobe protruding into the bladder (my uro trimmed it down during both surgeries, but never got most of it), so the median lobe may or may not be blocking the bladder opening. I saw where it was on an ultrasound. I also believe from my cathing days that the portion of the lobe that protruded into the bladder was about an inch in from the bladder neck, and my uro confirmed it was not close enough to block off the opening.
Bob
Camster bob120
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bob120 Camster
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I guess it depends on what is actually causing the blockage and symptoms. Do you have trouble or pain when urinating, and are you retaining urine in your bladder after voiding? Some men with small prostates are blocked, and some men with very large prostates are not. Getting up at night might not even be caused by a blockage, and I think is the symptom most likely not to be solved by reducing the size of the prostate. Urine retention after voiding and the inability to pass urine is the most likely to be helped,
Camster bob120
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There is a doctor in Pittsburgh that does PAE, Dr. Kevin McCluskey. He is an assistant professor at Pitt. He is going to try to get the PAE pre-authorized by my insurance. I've had no luck in the past so I wish him the best in trying.
bob120 Camster
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It's good they are doing testing before proceeding. In most of the cases I have seen posted, where procedures don't get the desired result (as was my case as well), it's because something else caused or contributed to the problem, other than what the procedure treated. A perfect example is that women get LUTS will all the same symptoms of frequency, urgency, retention, pain, etc. And we know women don't have prostates, but they do have bladders. So all the symptoms of LUTS in a man can be bladder related as well as prostate relate.
Bob
Camster bob120
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Chip_Bunker Camster
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We have the same situation. I have a median lobe blocking urine flow.
One doc said Urolift and a "partial turp" so I can retain antegrade ejaculation.
But Urolift corparate said median lobe excludes me from the Urolift procedure.
But this doc in Laguna said try Urolift - see what happens - then try "mini-turp."
What is happeniung with you lately,
Cheers,
J.
kenneth1955 Chip_Bunker
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tim32862 Chip_Bunker
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I had PAE Nov 2013, about 25% flow improvement for a few months then slowly back to where it was before. Turns out I have a median lobe which reduces the effectiveness of PAE too. Interestingly the Prostate reduced from 53g to 38g so the PAE actually did what it was supposed to do - just doesn't get the flaming median lobe out of the way. I have asked my Urologist for Urolift (they do that as well, it's a University Hospital), but like you he has pointed out that Urolift may not work with the median lobe issue but he's still prepared to consider it. The alternative he's talking about is a "Limited TURP" just to resect the median lobe as the rest of the urethra appears to be unrestricted. I have serious reservations about any form of TURP given the sexual side effects. Not sure a Limited TURP is any less damaging from that perspective. Anyone got a view on side effects from just a median lobe TURP? PAE and Urolift procedures would without doubt remain my first choice options without the median lobe issue.
kenneth1955 tim32862
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jimjames bob120
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Any progress on the nocturnia. I just re-read your post and one thing stuck out where you said:
"Regarding your question on retro and flomax. My uro said "if you didn't get retro from flomax, you won't get it from the surgery"
Is the urologist talking about TURP? If so, I would definitely get another opinion, because from what I know you probably will get retro from TURP regardless of how you respond to flomax.
Jim
kenneth1955 jimjames
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Chip_Bunker tim32862
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Thanks for feedback.
I have been to SIX urologists here in Southern California. All have given me different suggestions!
One wanted to TURP right away. Another taught me how to "Self Cath." Another gave me Flomax. Another said wait and see. One said HOLEP. Another - in Germany - said EP (ejaculate preserving) TURP. One said a "Mini-TURP." Another said Urolift.
WOW!!! I guess that is why they call it "Practicing the ART of medicine." And these were all fancy med-school graduates. Amazing.
But - just like having an attorney - the ultimate decision is the client's to make.
The majority of docs - along with Urolift corporate office - said Urolift will not help a person with a median lobe - like I have. So maybe I will be the test rabbit. I have a median lobe. Maybe it will work on me?
But this does suck. Haha. But I am grateful to have options.
Can you imagine being a villager in the Amazoin with this problem? What on earth do these poor chaps do? Self-Cath with a stick everyday?
bob120 jimjames
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I still average about one incident a week with the nocturia. Had one last night. Voided 3000cc overnight from about 2AM to 7AM, going about every 15 minutes, when it finally let up and I slept until noon. Thank goodness I'm retired. Most nights I only get up 2 to 3 times and void around 700cc, and get back to sleep within minutes after using my bedside urinal in the dark. I've consulted with a kidney specialist, urologist, cardiologist and my GP and they don't have a clue about the overflow nights when I void 2 to 3 liters in a 4 to 5 hour session. I no longer drink alcohol since my surgeries in April, and whatever I eat or drink doesn't seem to matter. I no longer take any meds, any vitamins or supplements.
But to adress the other issue, brought up by Chip Bunker, I had a turp on my median lobe in April. This was after a second bout of hematuria (hemmoraging fresh blood that filled my bladder and clotted up my urethra) in a little more than a year. I had the Greenlight laser in mid 2012 which didn't remove the median lobe. A second Greenlight laser in response to hematuria at the end of 2013 removed a bit of the median lobe as well as bladder stones, cauterize my bleeding prostate and bladder neck, and resectioned the bladder neck. Both of these procedures spared the area that result in retro. I was really concerned about retro. In April, 2015 another hematuria resulted in a turp which removed the median lobe and cauterized a bleeding prostate. A second surgery two weeks later attempted to stop the continued bleeding and I was scheduled for another surgery to find and stop the bleeding a week later, when the bleeding stopped on it's own. This was all fresh blood, not just bloody urine. I had 6 pints of whole blood transfusions in the 3 weeks.
(I needed 8 pints during the Dec. 2013 hematuria and GL).
Since I don't take any aspirin or blood thinners, these heamaturia incidents were a mystery. The only other thing I could think of that thins the blood is alcohol so I quit drinking it in April. But my doctors said they don't think it's the alcohol but don't know what caused it. Obviously, however, the three prostate procedures must have chewed my prostate up and weakened whatever veins are in there.
Finally, my biggest surprise was that the retro I was so worried about happened and was a non issue for me. I still ejaculate, but the ejaculation goes into the bladder instead of out the urethra. I honestly had forgotten about it and my first orgasm about 6 weeks after the surgery felt exactly the same and I couldn't understand why I was dry. Then I remembered, it's the retro. For me the orgasms are indistinguishable, the orgasm is the same, the ejaculate is just re-routed, which actually can be a benefit in terms of tidyness.
Bob
bob120 Chip_Bunker
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I just posted a reply to Jim James, above, relaying my experience with a turp to remove my median lobe and retro 4 months ago. One thing I didn't mention is that removing the median lobe has increased my bladder capacity. The lobe as I saw it on an ultrasound was protruding into my bladder, and was seen as a dark shape covering about the lower 15% or so of my bladder. After it was removed, I urinate larger volumes. I know this because I use a bedside urinal ant night that has cc markers and I note the volume and times I get up at night. Due to about 20 years of bph, my bladder apparently built up a wall of muscle that reduced my outputs to about 200 - 250cc when I woke up at night needing to urinate. After the turp that removed the median lobe, I now go about 350 to 400cc per urination. So instead of getting up 5 or 6 times a nigh, I now normally get up 2 to 3 times. Using the bedside urinal in the dark, I get back to sleep almost immediately.
Everyone is different and there are many different outcomes, but as I said to Jim James, the retro that had me so frightened, turned out to be a non issue for me. To quote Woody Allen, "Every orgasm I have ever had [retro or not] has been spot on."
Good luck.
Bob
jimjames bob120
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Well first I'm happy to hear that the retro was a non-issue for you. In my case, after experincing retro on Flomax, it's one of the reasons I've put off an operation, but we're all wired differently. Ironically, I used to practice a sort of retro for a brief period in my twenties after reading about some Eastern sexual practices. One of the benefits was that you could recover somewhat faster between ejaculations. So, not all bad!
To your nocturnia, it does sound like a mystery. Sounds like they've ruled a lot of stuff out such as diabetes insipidous, and I'm also assuming your not dehydrated.
So -- and this is just a layman's stab at things -- all that urine must be coming from somewhere because you can't constantly urinate more than what you take in.
With my nocturnia -- which isn't nearly as bad as yours -- I've noticed that there may be a correlation to sodium intake. For example, let's say on Monday I eat a high sodium diet. What tends to happen is that the sodium forces my system to absorb the water and I will urinate less. But then let's say on Wednesday I come off the high sodium diet and really watch my sodium intake. Well, what seems to happen is now my kidneys start releasing all that retained water and now all of a sudden my urine output exceeds my daily intake. But the urine has to come from somewhere, so it is probably coming from the water retained by my body when I was on high sodium.
Not sure if this has anything to do with what's going on with you, but you might keep a log of sodium intake or play around with sodium in your diet to see if it makes any difference.
Beyond that, I see a kidney specialist if you haven't already, and keep looking for answers.
As to the median lobe thing and bladder capacity, is it possible that the operation simply changed your the point where you get the sensation that you want to urinate as opposed to the actual capacity? I ask because in my case I'm also naturally voiding only 200-250 on average, as you were before your procedure. But I know from previous urodynamic testing, plus from my self-catheriztions, that my actual bladder capacity is probably closer to 1000cc. It's just that I get the urge earlier now which is good because if my bladder fills to over 400cc, I am unable to naturally void and need to use the catheter.
Jim
bob120 jimjames
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Thanks for the tip on the sodium. I'll keep that in mind. I pretty much don't restrict anything I eat. I've had 3 incidents of extreme nocturia in the past 3-1/2 weeks. Two were 2 days apart at the end of last month, and one was 2 days ago. The fact I went almost 3 weeks without an incident would seem to rule out food, although I did have Chinese food pprior to 2 of the 3 incidents, so maybe there is a connection to sodium, or seafood, or some of the spices in Chinese food. I did see both a kidney and heart specialist thinking there was some hormonal cause brought on by the heart or adrenals, but neither specialist could find anything. Obviously my body is flushing water during these incidents, but what the trigger is remains a mystery. At this point, I'm not too bothered by it. The only effect is I get 4 or 5 hours of sleep until noon, instead of my normal 8 hours until 9:30 to 10:00.
I never got retro on flomax, but I did get joint weakness and a stuffy nose that was troublesome. The thing about flomax is it stopped working within a few months of starting to take it. When it stopped working, al the side effects went away as well. If it had continued to work I probably would have taken it for years to avoid surgery.
I think you are correct about the protruding median lobe causing a signal to urinate, feeling full at 250cc's. The first time I went to the ER fro retention they removed 1400cc's into the cath, so my bladder definitely could hold more. But at 250cc's I felt a strong urge to urinate. I never tried to hold back and delay urination. Now I'll sometimes ignore the urge at night and sleep another hour. 2 to 3 times at night is my natural routine most nights now.
A relative of mine self cathed for years, then had a turp but had to go back to cathing a few years later because his bladder lost elasticity. In his case he never felt the urge to urinate, so he must have stretched his bladder to the point of incapacitating it. He's in his 70's and caths on a daily schedule of 3 to 4 times a day.
After 4 surgeries in three years for the bph and the hematuria, if it happens again I probably will opt to get my prostate removed.
Bob
jimjames bob120
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Chinese food is packed with Sodium. So, along my line of thought, what is happening in layman's terms is that after the Chinese meal, the sodium you ingest will hoard your fluid intake. Then, when you eat normally -- lower sodium -- all the water will flush out of your system, resulting in a very high daily output and nocturnia. Remember, fluid out equals fluid in plus whatever is burned off by perspiration, etc. So, if you're urinating MORE than you're taking in, that means some of that urine must be coming from past fluid intake stored in the body.
To test this you could try a sodium restricted diet for a month or so, and see if that has any effect on the nocturnia. Alternatively, you could do a daily sodium log of all the foods you eat and compare that to any nocturnia events keeping in mind there may be a time lag of a day or so between when you have a high sodium meal/day and the nocturnia
A very good web site to measure your sodium intake is "my fitness pal" with no spaces inbetween. The software does a lot more than measure sodium, but that's what I used it for when I was trying to lower my bp.
Jim
jimjames bob120
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I tried to post back with some ideas, but apparently it was intercepted by the forum software "for review" because I included a web site. But as an overview until my original post is released, given what you said, and the persistence of your nocturnia, I think reducing and/or tracking your sodium might be something worthwhile to look into.
Jim
bob120 jimjames
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Regards,
Bob
joe12590 kenneth1955
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kenneth1955 joe12590
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Jezzaman bob120
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I am 53 year old with BPH which appears to have a caused an episode of AUR. I am now catheterized and booked in for Green Light Laser.
Your experience is very interesting and i am keen to find out more.
I would also like to know which Urologist you used as he sounds like the kind of guy one needs in this situation! Not sure if you are allowed to mention names here though? THere will be many other people interested in your post on this Forum as well,!
bob120 Jezzaman
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I'd be glad to answer any questions. Curious to know if you plan to have the GL with your own urologist next week or plan to switch doctors. My urologist has offices in Staten Island, NY and Howell, NJ. His name is Dr. Vance Moss. He is also a combat surgeon and served in Afghanistan. He did both my GL and my turp. Personally I think the turp got better results. But it is only about 6 months since the turp so it's probably to early to tell. Most issues pop up after about a year.
kenneth1955 Jezzaman
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jimjames Jezzaman
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Jim
Jezzaman bob120
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The DOc has suggested self catheterization intially and is booking an GL operation; however he reckons there is a 2 month waiting list so I have time to consider all options and see how I get on without an indwelling Catheter which is where Im at currently and sick of it! Now scouring the posts here to glean as much info as possible.
bob120 Jezzaman
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My uro performed 2 greenlight lasers on me and a turp. I felt the standard turp was a quicker and less painful recovery. For me the retro ejaculation didn't matter. I was very worried about it but it feels no different to me. An alternative to the indwelling cath is to self cath several times a day. I learned to use the self lubricated hydrophillic speed caths (about $1 each) and used them for a time. Once you learn it, it is fairly easy and painless. to use.
Jezzaman jimjames
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Yes I do realise this, so am now considering the other options such as Urolift and PAE. But I am in UK so its very different over here, although I do apparently have the choice to go wherever i want for the procedures.
Having read extensively all the posts I am coming to the conclusion that the only permanent and fully effective solution if you have retention due to BPH is probably GL, Holep, or TRaditional Turp.
As regards RE it seems that you may be able to avoid this if the surgeon is clever enough and can leave a flap of the Prostate to prevent Semen flowing back into the bladder according to some posts I have seen. Are you still happy with your self cathing?
jimjames Jezzaman
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As to "Am I still happy with self cathing", a better question is *was* I happy with self cathing, because as I mentioned I really only do CIC very occasionally now, maybe once a week.
Hopefully, tomorrow (Monday) my post will be out of moderation and some more of your questions will be answered on CIC. I strongly suggest you give it some consideration and ideally a decent trial -- 3-4 months. You can always stop self cathing and get an operation, but once you get one of the operations you're contemplating, you're pretty much stuck with some of the results for life, such as retro.
Jim
kenneth1955 Jezzaman
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Jezzaman jimjames
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yes I am definitely going to give CIC my best shot, but thinking of the practicalities; for example I am just about to go to the pub with a mate (the same one that i was drinking with when I got the AUR!!)
i am only able to tolerate 1 piint of beer currently but that is no bad thing.
I have the Foley cath in and a leg bag. But if I was self cathing then id have to take a medical kit bag to the pub; is it really viable and safe? Id worry about keeping it sterile in a typical pub toilet scenario. But i shall see i guess.
Jezzaman kenneth1955
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I am not being forced into anything, but I have had 2 serious episodes of AUR now and it is no fun at all!! Currently feel "safe" with an indwelling Cath and leg bag!
J
Jeremy
kenneth1955 Jezzaman
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jimjames Jezzaman
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My "kit" was simply my cath and two small bottles that could fit in my pocket. One, alcohol hand cleaner. The other a spray antispectic. Actually I didn't even need the hand cleaner, since I never touch the cath expect for the plastic rim. All in all, my procedure is quite sterile, but if you read the literature, all you need is what is termed a "clean" procedure, not a "sterile" one.
As to the cath itself, the one I use doesn't bend well, so I would carry it in a backpack. Alternatively, you could use another type of cath that does fold up and keep it in your pocket. At one point I was considering have a special pocket made so I could carry it in my pants unfolded, but never got around to that.
Jim
Chip_Bunker jimjames
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You are my SELF-CATHING HERO!!!!!!!
Everyone with "urine-flow-difficulties" should learn how to self-cath.
And your info is INVALUABLE!!!
Thank _od for these forums - and for people like you.
Gratefully,
Chip
jimjames Chip_Bunker
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I see my post to "Jezzeman" finally came out of moderation. In case you missed it, or for anyone else interested in CIC (self catherization) it's in this thread:
https://patient.info/forums/discuss/self-catherization-an-alternative-to-turp-greenlight-holep--336874
Feel free to reply here but probably better in the thread above to keep the self cathing stuff in one place.
Jim
jimjames Jezzaman
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https://patient.info/forums/discuss/self-catherization-an-alternative-to-turp-greenlight-holep--336874
Jim
steven43881 Prost63
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bob120 steven43881
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What kinds have doctors have you visited and what have they said? Have you had any scans of the area like a CT scan or MRI. Have you seen a good neurologist, like the head of neurology at a teaching hospital?
Urologists can be pretty worthless when things go wrong outside of a very narrow scope? Neurologists deal with the spine and the nerves of the body. SInce all pain originates in the nerves, they are the best in diagnosing pain. I had unexplained stabbing pains in my upper thigh about 20 years ago. I went to a neurologist and in about 3 minutes told me I had Meralgia Peristatica. He did follow up tests to confirm, but they confirmed his original 3 minute diagnosis was correct. Apparently a nerve that goes from the spinal cord through the pelvis to my upper thigh (right about where my pants pocket was) was very sensitive to pressure and would fire when anything was in my pants pocket. The onlyway to stop the pain was to sit down and pull my knee into my chest to free the trapped nerve. AFter about 20 minutes of walking I'd have to pfind somewhere to sit and pull my knee into my chest for about 5 minutes until the pain stopped. His prescription was to never carry anything in my right pants pocket. It worked and it's been about 20 years without any pain in my leg.
Try a neurologist for the pain.
steven43881 bob120
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I will try this. I am going to the University of Gainsville at Florida, but I am seeing a Urologist. I will see if they will transfer me to Neurology Dept. I hope that is the answer. I am going out of my mind thinking I am the only one with this condition. Each day is a struggle. Please keep in touch with me. I have to have someone to talk to. i don't feel like the same person I used to be before the operation. The doctor ( who did the procedure ) put me on flomax for a week, and then went ahead and did the TURP. I wish I had never had it done. ???
bob120 steven43881
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Bob
steven43881 bob120
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It's good to find a friend on here. I had the traditional TURP and I was only 59. I had it because I guess I was scared. I had just come out of a relationship. A week after she broke off with me , I started to get the sensation that I couldn't sit down. It felt like I was sitting on a golf ball. My prostate was very swollen it seemed. I had all the std tests done and had negative results. The problem was I was already having prostate problems and my urine flow was at a very minimal; as well as around 5 bladder stones and quite a few kidney stones. I was desparate. I found this urologist and he did all the tests. It was also around the December holiday season. He called me in one day and had me take a urine flow. When I had finished he told me I had the urine stream of an 85 yr old man. Because it was the holiday season, he offered me a window and said he could do the TURP on the next day. I didn't mind the peeing bad, I just wanted the swelling and pain to go away, so I took him up on his offer. I regret the decision I have made as I have been having ongoing problems with this ever since. I wasn't given the choice of Avadart--just the TURP.
Now tomorrow I will be going to Gainsville. I will see the Urologist there and suggest he send me to the neurologist. I'm frightened about all the decisions that I have made and have been living in misery for six years. I am so grateful for the friend I have made on here.
Steve
bob120 steven43881
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Before the Greenlight I also had that feeling of sitting on rolled up sweatsocks. It was annoying but not painful. 18 months after the GL, I had uncontrolled hematuria (bleeding fresh blood from the prostate). The fresh blood clotted almost immediately and blocked up my bladder completely. I was in hospital for a few days on an irrigating 3-way cath and then had a second Greenlight Laser. This time my urologist removed more prostate tissue, found and removed a bunch of bladder stones, widened my bladder mouth, and stopped the bleeding. After another 2 month recovery my stream was good again, I was not retaining urine and could go about 2 hours between bathroom visits.
15 months later I had a second hematuria. About a liter of blood collected in my bladder and clotted my bladder shut. Again I was in hospital on the 3-way cath and this time my urologist used the classic turp to remove prostate tissue from my median lobe and stop the bleeding.
I needed 8 pints of blood transfusions on the first hematuria and 6 pints on the most recent one in April 2015. I started on the dutasteride (generic Avodart) three months ago, when I asked my urologist to prescribe a sonogram to measure my prostate, and found it was over 200g. in size. The dutasteride seems to be working well. My stream is stronger now than ever, and I'm voiding 300ml to 500ml at a time (I have a urinal with ml markings I use at night and note the output).
I haven't had the sitting on a bump sensation since after my second greenlight. I never had the constant pain you speak of. Good luck. I know it's easy to panic when you are in an unexplained medical situation that gets no better. But sometimes it can be resolved, just not as quickly as we would want it to. It's been 4 years and three surgeries for me, and I wish I would have taken the Dutasteride at the start, but it seems to be working well now. For how long is anybodies guess though. I can't go back in time, but it's also possible I needed those three surgeries anyway. No way to know.
kenneth1955 steven43881
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kenneth1955 steven43881
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bob120 kenneth1955
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kenneth1955 bob120
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steven43881 kenneth1955
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kenneth1955 steven43881
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steven43881 bob120
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I went to the Urologist yesterday and went through the whole ,nine yards. they did the ctscan and he said there was a little inflammation there where the bladder meets the prostate, but it shouldn't cause the issues I'm having. The dr. said it was caused by the overgrown prostate Then he did the cystoscopy and everything in that area looked fine he said. The TURP looked well done and clean. It's funny, though, because my prostate was only 60 gr when they scraped it and it was causing me such Urinary problems, a bladder retaining more than half of my urine, 6 bladder stones and so on.
So he suggested that I try pelvic floor physical thereapy. I told him that I would, but also suggested that I see a Neurologist for my own peice of mind to see if there is any nerve damage or whatever to the area. I didn't post last night because I was feeling sort of ok when I went to see the Urologist yesterday but then again it started up again last night when I was sitting down watching tv. I don't know if the physical thereapy will help, but can only hope so and take each day at a time. Any suggestions would be appreciated.
kenneth1955 steven43881
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bob120 steven43881
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The good news is that the turp did cure your urinary problems and you got your bladder stones removed (like I did). From what I understand, it did not address your issues with feeling like you are sitting on a tender lump. Not being able to urinate and retaining half your urine had to be dealt with, and at the time the turp was the only way. The turp basically is good for retention and inability to urinate, but won't solve other problems. I think you should go ahead with the pelvic exercises and also see the neurologist. If the pain is not being caused by the prostate, it amost has to be due to nerves firing in the pelvic floor area.
bob120
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Bob
steven43881 bob120
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bob120 steven43881
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kenneth1955 steven43881
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kenneth1955 steven43881
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steven43881 kenneth1955
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Steve
kenneth1955 steven43881
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steven43881 kenneth1955
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kenneth1955 steven43881
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steven43881 kenneth1955
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kenneth1955 steven43881
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steven43881 kenneth1955
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A couple of weeks later, I went to my regular family DR. and told him who performed the TURP on me. When I told him him it was Dr. Richard Chazkel, he put his hands in his forehead and said to me " Why did you go to see him?" "He doesn't know what he is doing." He told me as to how this Dr had hurt a woman before me and she almost brought a lawsuit against him.
I do remember after the procedure was done, I tried to sit up in the bed, but had a difficult time like a" pinching" feeling in the perrenial area. I thought to myself as that this might be normal as I just had a procedure done and it would probably go away within a matter of time. Well, it's still with me. Not quite as bad as it used to be, but it is still there.
I have tried to call this Doctor a number of times, but he will not return my calls My question to you Ken or Bob or anyone out there who reads this is "This being the Dr. who did the TURP. Is he the only one who can possably know what is causing my problems or would or could another specialist help me so that I Can or Could get my life back again. I am scheduled to see the Neurologist and Urologist again at the University Hosp. and hope they can give me some answers. I so much want to live again, but am starting to give up on hope.
Your friend,
Steve
lester90053 steven43881
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bob120 steven43881
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Your original doctor probably doesn't even remember your case. He could be a nut or a drug addict or just a poor surgeon. Even if he does remember making an error he would never admit it. Best to move on. Good luck with the neurologist and new Urologist. Let us know what they say and propose. Do you feel pain all the time or just when you sit? How bad is the pain on a scale of 1 to 10? Have you used any pain meds or gotten any therapy? What does your wife make of all this? Whatever happens, never, never allow yourself to feel sorry for yourself. It can only make things worse for you mentally.
Bob
kenneth1955 steven43881
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steven43881 bob120
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I will try. It isn't easy. I don't have a wife. I'm not married. I will see what the Urologist and Neurologist say. Pain and DISCOMFORT most of the time now.Especially when I go to bed at night. Pain level around an 8. I went to see my Gastroenologist today and he prescribed something for me that begins with the letter E that may help my muscle spasms down in my private area. I have discomfort upon standing and sitting. No pain meds, although I am seeing a Holistic Dr.who is helping me a little bit. I am taking cranberry extract, Resinall K, Medix 4 Life CNT (ml01), Thiosinaminum, Synergy One and Liquid Biocell.
steven43881 kenneth1955
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I will reply later. Thanks for being such a good buddy.
kenneth1955 steven43881
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kenneth1955 steven43881
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bob120 steven43881
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If you google it, you can see whether the symptoms match yours.
Another less likely cause is chronic prostatitis. I have had non-bacterial chronic prostatitis for years, but I've never had pain, though some people do. If your urine is clear and doesn't have a foul smell, than you don't have bacterial prostatitis, but may have non-bacterial prostatitis.
I know it can take a long time to get to the root of your medical problems. I have done many hours of research and googling and eventually do get to the bottom of things. But there is always another road if something doesn't work. All my doctors are those that will discuss my questions and issues with me, rather than shut me up and tell me what to do. I always go in with a lot of research and am prepared with questions to ask. SO I feel like a participant rather than just a consumer in myt medical issues.
If all else fails, there are centers that deal with chronic pain, and it may be worthwhile finding one, even if your doctors have not yet uncovered a cause.
steven43881 kenneth1955
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It has been tough. Sometimes I feel as if I am all alone in the world. I'm not all alone in the world; am I, Ken? Last night I was starting to feel better. Today it is back again. Worse than ever. I wish I could put a finger on it so that I could be myself again.
I do hope there's a light at the end of the tunnel.
kenneth1955 steven43881
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emil54651 Chip_Bunker
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emil54651 Prost63
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kenneth1955 emil54651
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michael71659 bob120
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kenneth1955 michael71659
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michael71659 kenneth1955
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I haven't decided, yet. I am told this or Finasteride which works in some. MY size is large 120g.
bob120 michael71659
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Dr. Moss was my doctor for the last 6 years. I have mixed emotions about him. I also had a very large prostate (over 120g.) From Vance i got a TUMT in 2011, a GL in 2012, a second GL in 2013 due to hemorraging of the prostate and bladder stones (neede 8 pints of whole blood), and a TURP (because he couldn't get a GL machine in hospital) in 2015, also due to hemorraging of the prostate (needed 6 pints of whole blood). At one point I had excessive urination at night (up to 3 liters) for about 9 months. He said he couldn't help me with that. Actually no doctor could and it went away on it's own. Before my TURP in 2015 my prostate was up to 313G. It was 195G. afterward. The TURP preserves tissue and the pathologist found no cancer. I will say that both GL's were less than successful, and the TURP finally gave me a decent stream, and was a faster recovery (about 6 weeks instead of 8 for the GL's). Having had both I think the TURP is superior and wouldn't recommend the GL at all. In Nov. 2015, 6 months after the GL I started taking dutasteride to keep my prostate from growing back as fast. A year later after taking dutasteride for a year I got a sonogram and my prostate was up from 195g. to 235g. Dr. Moss said he would call me to discuss the sonogram. We made a half dozen calls to his office over the next three months and despite being told he was notified of my call and had the sonogram on his desk, he never called back.
kenneth1955 michael71659
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Michael there are other procedure you can have that will work besides cutting it out Rezum PAE and Urolift That is the one I had. You need to research more and not give in to the doctors. 9 out of 10 cause retro and other problems. Are they even sure it's your prostate not your bladder. doctor allway want to blame the prostate if they can't find a problem Once you have it cut out you can't get it back Ken
bob120
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P.S., I also forgot to mention I had a membrane partially blocking the prostatic urethra six months after my first GL, and self cathed every 2 to 4 weeks throughout 2013 "to keep the channel open". At the end of 2013 I hemorrhaged and got my second GL. Following both GL's my stream was never right. It stopped the retention, but my stream was still off. I had to lean sideways to keep a stream going. The TURP gave me a proper stream. Also ought to mention that none of the procedures stopped me from needing to urinate 3 to 4 times a night. It may be my bladder was thickened after 20 years of bph and my bladder capacity is low, so after 200ml to 350 ml. in my bladder I wake up. For the past several years I have used a couple of 1 liter urinals in a basket by my bed so I can sit on the edge of my bed, urinate into the urinal in the dark, and get right back to sleep. My PVR (post void residual) has been very good since the TURP (32ml. last measured by sonogram), whereas it was 400ml. before my first GL and from 125ml to 200ml. the year and a half after my first GL. (Since I was cathng every 2 to 4 weeks to keep the stricture from returning after Dr. Moss removed it with a cystoscope tool, I was able to measure my PVR whenever I cathed. I would say a procedure is required to stop retention and keep the PVR low so you are not urinating every 20 minutes because your bladder never empties. I also would say learning to self cath was a priority for me after my first trip to the ER when I was in retention and holding 1400ml. in my bladder.
bob120
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Noticed a typo, In June 2015 I had a TURP, not a GL. The GL's were in May 2012 and in Dec., 2013.
bob120 kenneth1955
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Unfortunately no procedure (other tha removing it) stops the prostae from growing back, that is the problem. The REZUM (vaporizing the channel with steam sounds similar to my TUMT (charring the prostatic urethra channel with microwaves) which was totally unsuccessful. I don't believe the urolift is offered for prostates in the 120G. + range. The PAE can be used for all size prostates and gets a lot of good reviews. I believe it is offered at Hackensack University hospital. I may consider it if I need another procedure in the future as my prostate continues to grow. Every procedure attempts to reduce the volume of the prostae by some method and/or increase the size of the prostatic urethra opening. They all generally work better on small prostates. Sometimes it is also necessar to trim back the bladder mouth as it may be causing the reduced stream. Sometimes there are bladder issues. A scan generally sorts all that out. Regarding retro, it bothers some but not others. It doesn't bother me at all.
michael71659 bob120
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kenneth1955 bob120
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First of all after the first surgery I would have gotten another doctor no man should have to put his body through that mess. I am glad retro does not bother you but there are alot of men that it does some even give up on sex because it is not the same that is no way to live. I will never give in to that type of surgery. At 61 I'm going to keep my ejaculation till I die. To me and many other men it goes with the orgasm and for me they are still very intense. Had dry orgasm there not for me. Been through retention and bladder spasm. Not a fan of catheters. I have a friend that had cancer and was talked in having his prostate removed. He said that was the worst thing he could have done. even his wife agreed with the doctor. He was only 49. Now he's 51 divorced and alone because he could not have sex it mess his life up He could not give his wife what she needed and the feeling he was use to He could have sex after he gave himself a shot. Erection last about a hour but not long enough for a orgasm. He told me that he can have one but it takes almost 2 hours and he said they are not with the time. He was depressed all the time and all he want to do is die. I talk with him during the week I tell him that he has to live if not for himeself but for his 2 kids there 10 and 8. Whats done is done but you have to go on. Even man is different and can deal with things in different ways Surgery is not the answer for all men. When you pick a surgery you have to be aware of every thing that the surgery will do good or bad. Take care Ken
kenneth1955 michael71659
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Michael Yes there are good and bad in all procedure. Try the finasteride for a while or ask your doctor for something without side effects there are many that will help. If you need anything looked up let me know I can print it for you and send it your way. It's a shame when we get older things change I just got a email from prostate net on a new pill I'm going to try it Its suppose to make it get smaller and help you with all prostate problems I cant put it on here they will not let me I will let you know how it is $12.95 I am going to try it on myself Take care ken
bob120 kenneth1955
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Hi Ken, I'm 70 and my orgasms feel as good as when I was a teenager. The dry orgasm is actually a wet orgasm that is directed into the bladder. All the sensations are the same, it's just the semen gets sent in another direction.
I feel for your friend. Has he tried oral sex? A lot of older people do that and it's not necessary for the man to get an erection to receive or give an orgasm.
There's always risks with surgery. I bought into the hype for the first GL, but the second one and the turp where dne in an emergency setting to keep me from bleeding to death so I didn't relly have a choice. Your friend probably was told removing his prostate would save his life, so again, there's not much choice.
jimjames bob120
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Bob and Ken,
I don't think the issue is whether or not a dry ogasm is as good (or not as good) as a "wet" orgasm. It's about informed consent, honesty and decency.
At a minimum, a doctor should fully inform a patient exactly what they probably will experience as a result of an operation or procedure.
If there is any hesitancy at all, a dry run (no pun intended ) with a retro inducing drug like Tamsulosin (Flomax) should be offered the patient. In fact, it should really be insisted upon. In addition, the patient should be made aware of alternative therapies, be it another type of surgery or procedure, drugs or self cathing (CIC).
Unfortunately, we read too often here, none of this is done.
Either retro is not discussed at all, or it's discussed in a very misleading manner such as "sex will the exactly the same and you will still have orgasms". While technically accurate, very misleading.
Jim
kenneth1955 bob120
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Don't no what they told him at the time but he is not happy now and a 50 you should be having fun. Yes I know you still have the ejaculation and it goes into the bladder. Mine were not good. I was on flomax and rapaflo when I first had one the built up was there but when the orgasm hit it went flat. no feeling at all no after glow. you know I did not like them told my doctor and went off them pill that is when I had the urolift done. I had bleeding to a year after could not stop then went into spasm and retention. Had to have emergency surgery. I would not sign the papers under the doctor ( not mine ) sign a paper that my prostate was not to be touched no cutting. It took him 30 minutes to sign I told him that I would bleed to death before I would let him touch me without him signing. All is great now. We all have a choise but I feel that they could have stopped the bleeding without cutting your prostate out He was the one that mess it up in the first place. We all have to deal with alot when we get older. We all have to pick how we want to live. You have and so did I Take care Ken Don't know if they dryed oral I know you can have a orgasm without a erection
kenneth1955 jimjames
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That is very ture Jim There have been alot of men on here that the doctor tells them the same thing and when retro happys the doctor laughs about it I don't think it is funny. Doctors feel when we get order that it is not a sexaul function we don't need it because we are not having kids. To me that is wrong it like we are animal were done producing so castrate them We need to know what is going on we need the information to have the best life we can. Jim I have said the same thing that you just said If you are going to have a surgery that is going to cause retro you need to know how it feel and if you can live without it. The doctor needs to give you a pill to cause it. Because once they cut the prostate THAT FUNCTION WILL NEVER COME BACK. Thank you Jim Ken
kenneth1955 jimjames
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Jim That is very true. Doctors do not feel that the ejaclation is a sexaul function, that is why they tell you you will still have a orgasm. They feel you don't need it because were not having kids. It's like were animal once were done castrate them. Then need to feel what it is like so the doctor needs to put them on a pill before the surgery to see if they can deal with it I have said that before and so have you. I feel men give up there prostate to easy. We need to fight for them Ken Thank you JIM
kenneth1955
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Sorry Jim Having a problem with my lab top did not know the first one went through. You all way say it better then I Ken In GA for Father's Day
Tucsonjj kenneth1955
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Late to this comment... but I agree totally... ejaculate significantly increases the pleasure of an orgasm... the dang Urologists seem to not realize this... I had a "partial TURP" in my early 30's and had some retrograde ejac... some, but much less volume, so I know!
bob120 Tucsonjj
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I guess it depends on the person. I had an orgasm 6 weeks after my turp and didn't even realize there was no ejaculate. I was really worried about it and it turned out not to matter to me at all. It's been over three years with retro and I never felt my orgasms were in any way diminished. I'm in my early 70's.
kenneth1955 Tucsonjj
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It does not happen to all men. Before I had my Urolift done. I was on Flomax & Rapaflo. There was the built up to the orgasms but when it hit. It went flat no feeling at all. Like I did nothing. I would never have a procedure that would take that away for me. I feel that my ejaculation goes with my orgasm. Have a great day all Ken