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Return to potency after RP

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User
Posted 10 Nov 2018 at 22:32

I wanted to post up a topic detailing members experiences as I have seen a lot of new members expressing their anxieties and uncertainty regarding sexual function 

for me I had nerve sparing surgery (for good or for ill) total ED and incontinence initially (full continence returned after 7 weeks) but with pump and daily cialis I was fortinate to regain full sexual function after 6 months. I attribute this to my relatively young age of 49 (45 at diagnosis)

many others here have positive experiences

there is hope for us sufferers, it is terrifying to think that we will be incontinent and impotent but it is not an inevitable outlook so take heart and stay positive

User
Posted 10 Nov 2018 at 22:32

I wanted to post up a topic detailing members experiences as I have seen a lot of new members expressing their anxieties and uncertainty regarding sexual function 

for me I had nerve sparing surgery (for good or for ill) total ED and incontinence initially (full continence returned after 7 weeks) but with pump and daily cialis I was fortinate to regain full sexual function after 6 months. I attribute this to my relatively young age of 49 (45 at diagnosis)

many others here have positive experiences

there is hope for us sufferers, it is terrifying to think that we will be incontinent and impotent but it is not an inevitable outlook so take heart and stay positive

User
Posted 11 Nov 2018 at 11:54
I’ve not gone down the surgical route due to the cancer already advanced on diagnosis.

Just wanted to say that all is not necessarily lost with permanent HT. We used to joke that my wife only had to hold my hand to cause an erection and then once treatment started there was nothing other than a deep nostalgic yearning. It would appear that the majority of the issue was psychological because now that life is pretty much returned to normal other than the three monthly jabs and checkups I can achieve a full erection - sometimes even just out of the blue! There are so many factors governing sexual function and libido other than testosterone that it’s difficult to predict the outcome of HT although I do realise that for the most it is a life of ED.

Dave

User
Posted 11 Nov 2018 at 13:15

Dave

Just wanted to say thanks for the post. As a new boy only diagnosed in the past couple of months it really does help lift you when you read of someone with the same dx and treatment plan , except I'm on abi instead of chemo.  As you are 2 years down the line as well , filling skips etc , thats great news and long may it continue.

User
Posted 11 Nov 2018 at 14:20
David was diagnosed Gleason 9 TB3 in 2015. He's had HDR Brachytherapy, followed by 5 weeks RT, we had two bank holidays during his five weeks, and three years of Prostrap. He has had. PSA of <0.1 for two years. He completed the HT six months ago and his PSA was <0.1 at the last test.

He’s had very low libido, and on going ED, though this is slowly changing.

We have moved over 10 tons of gravel, built raised beds kept our organic veggie garden of nearly an acre going,and a large garden with hedges. He is now 68,and reasonably fit. He has also plays and sings every day and he has started doing gigs again raising awareness and funds for prostate cancer. He’s a pro musician and doing this is really important to him. Yes, he has side effects down days and we both miss the intimacies of previous days, and look forward to some changes there.

It’s been hard, oh, we also had an extension built and the builder was a nightmare, so I had to project manage.

We are mostly positive, enjoying our “good life” rural lifestyle and have lots of plans.

We holiday in winter, and will be off again next month, would be sooner but I’ve hurt my back! He’s caring for me at the moment. 👍👍

I hope this helps.

Leila

User
Posted 12 Nov 2018 at 12:16
They should issue those rings with the "goodie bag" you get after your op along with pads and catheter bags!!! Absolute godsend - wish I had discovered them before my OP!!!
User
Posted 12 Nov 2018 at 12:53

Originally Posted by: Online Community Member
Can I just add on this thread , as I have on other threads , that just the addition of a cheap durex penis ring from the chemist can make a 70% erection into a 90% useable erection.

 

On a serious note, my ED pump allowed for a ring to be put on it and then slipped over Mr P when ready. Main issue was that it was so d*mn tight that things tended to get purple rather quickly! Might try the ring instead.

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User
Posted 11 Nov 2018 at 07:03
I was 4& at surgery and was more or less instantly continent. A pad would last a week. Fully impotent but very actively chased my own recovery re drugs and pump and injections etc. I only had partial nerve sparing. I also had a year of HT which didn’t help and was denied low dose Cialis for a year. But at the 2 year mark with Cialis and a simple penis ring then all was fine and has continued to be since if not improved. I’ve lost roughly 2” in length but still enough left for the job in hand :-)
User
Posted 11 Nov 2018 at 10:39

Good idea -  positive post!  I had surgery (full nerve sparing) at 53.  Initially, there was no action at all due to ED, and incontinence gradually abated over six weeks. Just as the ED showed signs of leaving (an exciting moment, waking up with a semi!), due to a rubbish pathology report I had RT and HT - Bicalutamide and tamoxifen.  ED became full time, loss of libido was complete but fortunately the incontinence only got a bit worse.  I used the pump as much as having a young child in the house would allow, probably around 5 times a week at the peak.  I had Cialis 5mg daily throughout.

So now I'm off all treatment, and have been for six months.  Incontinence is in effect light occasional dribbles, mainly in the evening.  I can get a more notable dribble (with absolutely no warning) caused by pressure on my perineum when sitting awkwardly or squatting.  ED has largely though not completely gone, but I'm too scared to try life without Cialis at the moment.  Strangely, my libido has taken a knock, but that may be in part due to being self conscious that every time I get aroused I leak a fair bit of urine.  I have lost 2 inches in length (boo), but still have plenty to function with.

It's been a vicious two years, but all in all I'll accept the results.  Having grade 5 cancer didn't leave me with too many sensible options. 

Hope this gives a positive picture for all those on their own journey.

cheers

Graham

User
Posted 11 Nov 2018 at 11:54
I’ve not gone down the surgical route due to the cancer already advanced on diagnosis.

Just wanted to say that all is not necessarily lost with permanent HT. We used to joke that my wife only had to hold my hand to cause an erection and then once treatment started there was nothing other than a deep nostalgic yearning. It would appear that the majority of the issue was psychological because now that life is pretty much returned to normal other than the three monthly jabs and checkups I can achieve a full erection - sometimes even just out of the blue! There are so many factors governing sexual function and libido other than testosterone that it’s difficult to predict the outcome of HT although I do realise that for the most it is a life of ED.

Dave

User
Posted 11 Nov 2018 at 13:15

Dave

Just wanted to say thanks for the post. As a new boy only diagnosed in the past couple of months it really does help lift you when you read of someone with the same dx and treatment plan , except I'm on abi instead of chemo.  As you are 2 years down the line as well , filling skips etc , thats great news and long may it continue.

User
Posted 11 Nov 2018 at 14:09

Good idea to get a range of outcomes all in one thread.

I had RARP at Addinbrooks in Jan 17 so coming up to two years. I was 54 at the time. G7 3+4. Extracapsular extension. T3a. Nerve sparing RH only.

Catherter out after one week and dry at night immediately. Completely dry after 6/7 weeks.

Ed on going.

Prescribed 100mg viagra once per week by my Uro. Went to GP and got 16 per month on repeat prescription. Some responce after about a year but nothing useful. Wanted Cialis but where I live it was not on the prescription list. Eventually in September 18 I got 5mg daily but had to pay. Now it is on the list and I just got prescribed both 5mg daily cialis and 100mg viagra. Still only getting slight responce when taking both. Just a slight swelling but I think very slightly improving slowly. Using a vacuum pump daily.

PSA still undetecable.

Best of luck to you all

Cheers
Bill

Edited by member 11 Nov 2018 at 14:16  | Reason: Not specified

User
Posted 11 Nov 2018 at 14:20
David was diagnosed Gleason 9 TB3 in 2015. He's had HDR Brachytherapy, followed by 5 weeks RT, we had two bank holidays during his five weeks, and three years of Prostrap. He has had. PSA of <0.1 for two years. He completed the HT six months ago and his PSA was <0.1 at the last test.

He’s had very low libido, and on going ED, though this is slowly changing.

We have moved over 10 tons of gravel, built raised beds kept our organic veggie garden of nearly an acre going,and a large garden with hedges. He is now 68,and reasonably fit. He has also plays and sings every day and he has started doing gigs again raising awareness and funds for prostate cancer. He’s a pro musician and doing this is really important to him. Yes, he has side effects down days and we both miss the intimacies of previous days, and look forward to some changes there.

It’s been hard, oh, we also had an extension built and the builder was a nightmare, so I had to project manage.

We are mostly positive, enjoying our “good life” rural lifestyle and have lots of plans.

We holiday in winter, and will be off again next month, would be sooner but I’ve hurt my back! He’s caring for me at the moment. 👍👍

I hope this helps.

Leila

User
Posted 11 Nov 2018 at 16:15
Over 3 years since partial nerve soaring for me and I now get a reliable normal useful erection without pills, what's more I think it is still getting better with some return of the lost inches!
User
Posted 11 Nov 2018 at 17:00
Even without surgery I experienced a loss of size. It was explained to me by the Specialist Nurse that it was down to “non use atrophy”. Just about back to normal now that there’s life again.
User
Posted 11 Nov 2018 at 17:11

I should have added on my previous reply.

I had no loss of flaccid size at all. In the pump atleast as natural before maybe a bit more.

Cheers
Bill

Edited by member 11 Nov 2018 at 17:38  | Reason: Not specified

User
Posted 11 Nov 2018 at 17:32
Can I just add on this thread , as I have on other threads , that just the addition of a cheap durex penis ring from the chemist can make a 70% erection into a 90% useable erection.
User
Posted 11 Nov 2018 at 18:53

If life gives you lemons , then make lemonade

I assume that learning this is what decided you to start to use this quote

User
Posted 12 Nov 2018 at 12:16
They should issue those rings with the "goodie bag" you get after your op along with pads and catheter bags!!! Absolute godsend - wish I had discovered them before my OP!!!
User
Posted 12 Nov 2018 at 12:53

Originally Posted by: Online Community Member
Can I just add on this thread , as I have on other threads , that just the addition of a cheap durex penis ring from the chemist can make a 70% erection into a 90% useable erection.

 

On a serious note, my ED pump allowed for a ring to be put on it and then slipped over Mr P when ready. Main issue was that it was so d*mn tight that things tended to get purple rather quickly! Might try the ring instead.

User
Posted 12 Nov 2018 at 14:41
Yeh the durex ring is very comfortable and may not work for all but deffo improves things. The rings you use with the pump are for total ED tbh. Yes they strangle the poor fellow and it’s not what it was but it does the job. 30 mins max for me then 30 mins break. I don’t need them anymore but religiously use the pump four times a week whilst shaving. I’m still improving 3 1/2 yrs on but won’t quit Cialis whilst I’m enjoying an active sex-life again.
 
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