One year on from Radical prostatectomy

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New to the forum.
I thought I was in for a hell of a run, and I wasn't wrong.
My PSA was 4.6 Gleason 4+3 and managable, but we decided on old school surgery. Septemeber 2022.
Cathetor was in for 2 weeks and when it came out it was horrible.
I Couldn't walk 10 meters without losing it all. Even sitting there talking to friends I had no control. My mates are good mates and understand.

I did Kegels 4 months prior to surgery and have done every day, three times a day since. This, I believe is key. Every week it got better.

Skip forward a year, my incontinence is all but gone. 99% there but I'm still striving to get to 100%. I don't wear pads, maybe a tissue if I'm walking a lot, but it's never soaked.
I exercise heaps and still drink coffee. cancers not taking that from me haha.

I'm Undetectable. No leakage to speak of, and the other night in our spa, actually a year to the day the old fella rose. No drugs, just natural. Apart from the birth of my kids that was the happiest day of my life. It wasn't perfect, but enough to, well you know what I mean.
I had used Trimix before and it worked well but was sore. Pills help but I want to go natural. It's my goal.

I have read so much here about the struggle so many men have, but please keep at it. It gets better.
The other day I ordered a Kegel devise so when it arrives I'll report back to see if it totaly sorts me out. It also helps with ED so they say.

Awesome forum where we can speak openly. It's so important.
 
What is the device you ordered? I still drip 3 years later. 1 pad a day. I’ve been reading a lot about it. My PSA has started going up. Worried about having my incontenence getting worse if I have to have radiation.
 
Hi my husband had prostatectomy for cancer 41/2 years ago. Although he did Pelvic floor exercises before and ever since it did not help with his incontinence and needs 1-2 pads day depending on how active he is. He is 75 and we are very active out everyday and holidays often.
His PSA was undetectable for months and now is increasing this past 2 years to now 3.2. He had Pet scan and nothing can be found but there is a cancer around that area somewhere very small.our superb urologist is going to start him on injections of testosterone injections every 12 weeks to stop it growing and will do another PSA end January.
Very strange as nothing can be found on scans so playing safe.
Oh by the way he did have daily radiotherapy for 4 weeks 18 months ago but did not stop PSA rising very slowly. Mystified but he is very well and fit. Hope this is helpful. By the way get a CT scan to check your kidneys, not related to PSA but it did find he had silent Kidney cancer so had it removed. Very lucky they did scan as he would not have know until it got worse. Takes years to grow with no symptoms at all. Many people have it unknown to them.
keep having PSA tests in case it shows further cancer cells with slight increase. Good luck everybody. Keep well.
 
ptpms8 said:
What is the device you ordered? I still drip 3 years later. 1 pad a day. I’ve been reading a lot about it. My PSA has started going up. Worried about having my incontenence getting worse if I have to have radiation.
Click to expand...

This thing is called a Kegal Hard. I really have no idea what to expect but the reviews seem all good. It's worth a try. It is WAY better than doing manual Kegal they say. I'll see...
 
993man said:
New to the forum.
I thought I was in for a hell of a run, and I wasn't wrong.
My PSA was 4.6 Gleason 4+3 and managable, but we decided on old school surgery. Septemeber 2022.
Cathetor was in for 2 weeks and when it came out it was horrible.
I Couldn't walk 10 meters without losing it all. Even sitting there talking to friends I had no control. My mates are good mates and understand.

I did Kegels 4 months prior to surgery and have done every day, three times a day since. This, I believe is key. Every week it got better.

Skip forward a year, my incontinence is all but gone. 99% there but I'm still striving to get to 100%. I don't wear pads, maybe a tissue if I'm walking a lot, but it's never soaked.
I exercise heaps and still drink coffee. cancers not taking that from me haha.

I'm Undetectable. No leakage to speak of, and the other night in our spa, actually a year to the day the old fella rose. No drugs, just natural. Apart from the birth of my kids that was the happiest day of my life. It wasn't perfect, but enough to, well you know what I mean.
I had used Trimix before and it worked well but was sore. Pills help but I want to go natural. It's my goal.

I have read so much here about the struggle so many men have, but please keep at it. It gets better.
The other day I ordered a Kegel devise so when it arrives I'll report back to see if it totaly sorts me out. It also helps with ED so they say.

Awesome forum where we can speak openly. It's so important.
Click to expand...
 
Thank you for blog.
I am 5 months out from RP. 70 years old. Still wearing "pull ups" and pads. Down to three per day and can go through the night dry. The issue is walking (golf) and law of gravity dripping. Still doing Kegels and getting better. Let us know about the Kegel Hard machine.
Further, Doc recommends against clamps and external catheter which I tried but no longer.
Currently trying to get right dose of Trimix - up to 25 units but still not where I want to be. Doc prescribed 20 mg of Viagara on "non-Trimix" days. Anyone have comments/experience with Trimix?
Thx
 
THN said:
Thank you for blog.
I am 5 months out from RP. 70 years old. Still wearing "pull ups" and pads. Down to three per day and can go through the night dry. The issue is walking (golf) and law of gravity dripping. Still doing Kegels and getting better. Let us know about the Kegel Hard machine.
Further, Doc recommends against clamps and external catheter which I tried but no longer.
Currently trying to get right dose of Trimix - up to 25 units but still not where I want to be. Doc prescribed 20 mg of Viagara on "non-Trimix" days. Anyone have comments/experience with Trimix?
Thx
Click to expand...

I was using trimix before I came right, but the doctor who I was with told me there are more mixes available if the trimix never worked. I think the other is called bimix but I'm not 100% on that. Maybe ask your doctor about other options? Hang in there because you're ONLY 5 months in. It took me a year to the day before my old fella woke up haha. I never even started trimix until I was about 7 months in. You need to give your body a chance to recover. Time heals this....
 
Now 6 1/2 months post RP. Ultra PSA is good at <.02 (the threshold being .5) - so that's a good sign there. Hoping it stays there (BTW my Gleeson was 3+4 before surgery)
Doctor advised against Penile Clamps and external catheters which is fine with me. Didn't like the clamps anyhow. Never tried the catheters.
2-3 pull-ups per day with pads occasionally. Using Confitex "underwear" which I feel are great as they are more like padded underwear and I don't feel I have "put-ups" or diapers on. Makes me feel more "normal". They are great on the golf course as they collect a lot and don't feel as they have.
Can go through the night relatively dry.
When walking 18 holes - still have significant dripping and wetness. I don't weigh pads or pull-up as as I feel it is as much of a function of intake as it is leakage.
Continue to do Kegels and the three doctors I've discussed this with say that is really the only exercise to do.
Up to 33 units of TRIMIX with poor (hardness of 5) results - next step is trying a "ring".
Questions:
a. What does a physiotherapist do that enhances strengthening of the pelvic floor?
b. Are there devices or other pelvic exercises as good as or better than kegels?
c. Any comments on TRIMIX or "rings".
Happy New Year to all. Thanks in advance for your input.
 
As a famous President once said, "I feel your pain". I am 11 months post RALP and am living the tortoise and the hare story regarding incontinence. I read about guys who are totally dry after 6 weeks (the hares) while I am very slowly getting to that goal (the tortoise). My urologist was upset with the slow pace and sent me to physical therapy three months ago. I have been on PT with two different rehab places and can give you some answers to those questions. The 1st PT had me work on my core strength while doing my Kegels. That helped a lot. My core was weak. Two months later I was then able to transfer to a PT whose specialty was Pelvic Floor Physical Therapy, and she has helped even more in the month I've been seeing her. BUT you have to be willing to be as open as if she was your urologist. On an initial visit, she did (upon my agreeing) an internal exam in my rectum to assess my muscle tone. And on subsequent sessions we have discussed biological details about my leakage and urination techniques. Yes, I have learned a new way to urinate, and it is helping me stay drier longer. My worst leakage occurs during golf, and until I have it all figured out, I do wear a condom catheter to make the round more enjoyable. My PT would rather I stay active with the catheter, then to withdraw from golfing because I'm filling too many pads. The exercises I do are most likely the same ones you can find online, but her immediate feedback is great. We've actually scaled back, doing fewer reps but concentrating more on correct breathing techniques while relaxing and flexing the appropriate muscles. As for devices, my original surgeon recommended a VED (vacuum device) and I have used it daily for improving blood flow to the penis. The rings it came with do help maintain an erection, but I have used TRIMIX for years and can testify a much higher quality erection with it.
 
Hi there,
Sent you a PM as well.

yes I am about 6 weeks in and have to say it works, well it did for me. I also gave up caffine totally at the same time.
Between the two I can honestly say I am now so close to being like I was pre Prostectomy. No more stress incontinence late afternoon that sometimes occured.
I still sometimes leak when i fart hahaha but hey I can live with that! If I cross my legs that stops it as well.
You should try one, seriously.
The ED is also good and getting better.
PM me if you want to chat more. happy to talk :)
Cheers
Graham
 
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