Intro

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I am Froi age 71 and just had RRP with nerve sparing on 4/24/24 and am on my one month and 2 days post-op. I was Group Gleason 4+3 and my surgical path showed 10% of the prostate involved with no disruption of the margin. I will have my PSA taken by June 6 and hoping it will be ok so I won’t have to go through the 40 day radiation therapy.
Like most members I read in the thread, the two most immediate concerns are the : incontinence and the resulting ED. Presently I use 4 pads with stress incontinence happening when I strain or when I move sitting down. I do my Kegels religiously 3 x a day. Re: ED, I noticed some penile shrinkage or retraction and my 5 mg dose of generic Cialis is helping a bit to restore circulation per my MD but even with a challenge dose of 100 mg Sildenafil does not do anything at all. I know from my readings that the leakage will improve from as early as a few weeks to a year and I am early in the game. Regarding the ED, I guess I will just have to wait for my nerves to recover and hope to have some spontaneous erection no matter how mild before the magic 2 - year limit per what the studies say. Like the rest of us I am keeping a positive attitude and wishfully waiting for a turn after 3 months.

 

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Be patient. I’m 11 months out from RP. Basically 1-2 pads a day but I prefer Conftex (SP) under west with a pad at times. Re ED, still slow going. I’m trying Trimix injections 45 units (up from 5) with little success. I’m making progress slowly. My numbers were basically the same before surgery. Hang in there

 

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Yes, still early days for you, keep going with the Kegels. It’s slow, a very gradual process. I’m 12 weeks post op from a robotic RP with nerve sparing. I’m using one light weight pad per day. Some minor leaks if I cough or sneeze or lift something very heavy. I’m dry at night and have been for a while. For my ED I take 100mgs of Sildenafil every couple of days but apart from some enlargement not really an erection, yet.

 

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Hi Froi - Sounds like you are doing quite well. I had my op on 27th March and I am one month today since catheter removal. I have been changing out the same pad for the past week so I guess I'm continent. (Don't want to say it too loudly lest I tempt fate.) It's just about getting confidence in it again - which I think I largely have. It's only WHEN I think about it of course. As to ED I can get a soft erection with the pump which I use every two days. Seems to be working to some degree. I was only half nerve sparing. Still, not complaining. The orgasms are very good indeed - without full extension. I am very grateful for what I have. I had my first post op PSA got the results last week - undetectable. May there be many more of the same. All very best wishes on your journey. Again, it sounds like you are doing really quite well.

 

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Thank you Meunier, Dewibach 1and THN for your encouragement. I now am really glad to be on this forum. I sure will give you updates on my journey and will be waiting for yours too.

 

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It has been 3 months and 9 days post RRP and so far it seems I have improved a lot mainly on my first concern : stress urinary incontinence. I am now dry at night so I don’t wear pads at night and almost dry during day time except for rare leaks from severe coughing. I just wear a pad in case. I still religiously do my Kegels although unlike some of our members who could hold pelvic muscle contraction for 10 seconds, I would admit that the most I could hold one is just for 3-4 seconds as I feel I lose “grip after the 4th second. I just do 50 contractions a day which I think helped a lot. I had to stop seeing my PT after two sessions as it really boils down to the PT’s advice of “ doing your Kegels in whatever situation you’re in - walking. jogging, doing daily chores or even just lying down. “

My first PSA post op done a month after surgery was undetectable at 0.008.So far so good . But I would not relax at all , as a friend of mine who had PSA that was undetectable for two years suddenly had a PSA of 5. He had to undergo radiation and hormone suppressant up to now and still doing ok after 8 years.

Regarding ED I still have no spontaneous erection in spite of 10-20 mg of generic Cialis every other day and use of VED every 3-4 days. I will see my urologist again by September 4 and hopefully he could advise me something else although I am aware that wishful waiting for up to two years is our only recourse. Even urologists are baffled by the spectrum of ED getting better in a few weeks to two years and to some more than 50% of patients not getting better at all and thus resorting to surgery or shaft injections. I am still keeping my fingers crossed that hopefully soon that elusive erectile goal will be achieved.

So that is for now for my journey. Let’s all hang in there and wait for Chapter 2 of the American saga, I.e. Erectile Dysfunction etcetera…

 

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Best of luck as I have the same issue. I’ll be following your journey.

 

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Yes hang in there had my surgery 4/29/2023 . Schedule for sling surgery end of this September as far as ED woke up one morning and was stiff down there, mentioned it to my wife so together we agreed to try to do something, low and behold I was able to perform. So for me it was an overnight thing, or maybe the fear of the injections which is what my urologist wanted to try next.

 

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Thank you for sharing. I wanted to ask if after that serendipitous moment, has it happened again or has it been a total recovery toward a spontaneous erection that meant being back to your old self ?

 

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Donhand1. Thank you for sharing. I wanted to ask if after that serendipitous moment, has it happened again or has it been a total recovery toward a spontaneous erection that meant being back to your old self ?[/quote]

 

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My update - Thank you for comments on PT. My surgeon suggested I try PT and I may but if all I will be told to to do your kegels, then maybe I'll wait. My incontinence is getting better but slowly. Wish it would go away but a pad is a good safety margin and I wear special underwear that basically acts like a pad and it looks good.

My PSA continues to be less than .01 on the ultra sensitive PSA test which they say is non detectible. 5 years of PSA tests every 6 months and if it stays a <.01 I get tested annually.

Regarding ED - Pills nor injections don't work. Unfortunately, I have Venous Leakage and the only practical solution is a Penile Implant which I am considering. Need to check on insurance coverage. BUT, and this is a big BUT, the doctor says this surgery is 3x more uncomfortable and painful than the robotic RP surgery. Also there is a chance of infection in the area and then you start all over or quit. Tough decisions.

Any comments?

 

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Hi Donhand1- good news about your ED. Can I ask how old you are and whether you had any erection issues before your RP.

 

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Yes it seems to be back to semi normal my wife says I act like a kid with a new toy. It’s not new it’s just one I thought I had lost for good. Dealing with it takes something away from you and wears on you 24/7 . I’m 72 so yes hang in there and do what you can.

 

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Hi Donhand1- good news about your ED. Can I ask how old you are and whether you had any erection issues before your RP.

as stated I am 72 be 73 in January and no had no problems with ED before surgery.

 

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@Donhand1 Actually my question is how long after surgery did you notice that your spontaneous erection is back ? Thank you

 

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Well as I said had my surgery April of 2023 and just about a week ago nothing up till then. Had even stopped my daily cialis.