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no nerve saving and penis size

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User
Posted 14 Nov 2016 at 21:16

I have not decided on my treatment yet, but I saw the surgeon today and he was very upbeat. However having come home and hit the internet, I was reading about loss of penis size.


During the talk today one of the less optimistic points was that he would not offer nerve sparing because of the volume of cancer (9/12 cores, 40% left 50% right)


I have since read that loss of penis size could be greater after none nerve sparing operations.


Anyone have experience of this or any knowledge?


Thanks


Mark

User
Posted 15 Nov 2016 at 00:07

There is plenty of scientific explanation for this and nerve-sparing / non nerve-sapring doesn't make much difference.

Length

When they remove the prostate they also remove a section of the urethra and then join the ends back up. Basically, if you had a quite small prostate about 1" long then your penis will be 1" shorter. If you had a large prostate of 2" long you could lose up to 2". After the catheter has been removed it is important to exercise the penis regularly - pulling, massaging, tweaking, using the pump all help to pull the urethra down and the bladder hopefully comes with it. In some men, the bladder actually settles lower in the pelvis and some research suggests that the more you pump it & pull it, the better your chance of pulling the bladder down permanently.

Girth
This is the 'use it or lose it' bit. The cells of the penis are spongy and fill with blood when you get an erection. Without erections, the spongy tissue dies and cannot repair itself. The pump can offset some of this damage if used regularly but the problem is that it is hard to replicate what a healthy penis would be getting - erections during your sleep, on waking, watching the telly, sitting on the bus, etc etc. You can't pump all day & half the night. So the tissue dies.

John no longer has ED but the loss of size is a little bit of a problem - we can't do what were favourite positions because it simply isn't long enough. And he only had a small prostate. Mr P told us that some patients lose so much size that they can't stand up to wee anymore - they have to sit down because there isn't enough length to point anywhere.

It does seem to me that the hospitals & surgeons gloss over this a bit & I don't think the PCUK booklets spell it out either.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 18 Nov 2016 at 21:16
Lyn - you made me smile - thank you - Walter
User
Posted 25 Dec 2016 at 01:00
Well I had RRP two years ago, ED for around 6 months, but Pump and Cialis kept everything flowing, now have normal potency (or maybe the occasional cialis helps - placebo? Who knows)

But my main comment here is that my erect penis has not changed since before the operations

I was able to masturbate to climax a week after the op and continued to do so during my recovery

But who knows how different experiences work

Edited by member 25 Dec 2016 at 23:07  | Reason: Not specified

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User
Posted 14 Nov 2016 at 22:18

Hi Mark,


I have decided on RP, but the penile atrophy was a bit of a surprise when the pysio told me of this. However it has not changed my decision.


From what I have been told it all comes from the use-it-or-loose-it thing. I have resigned my self to using a pump for exercise, as I may not get spontaneous erection during the night (or at all), which seems to keep the blood flowing in the spongy tissues.


I am having an RP as i am very low grade at the moment, but the genetics put me at risk of re-occurrence.


Good luck.


Nigel

User
Posted 14 Nov 2016 at 22:20

Hi Mark

I had a nerve sparing prostatectomy and am worried about a loss of penis size. I am hoping that it is just due to ED and it will not be permanent. I don't think there has been a definitive study on this and of course everyone's experience will be different. I have an appointment with my GP at the end of this month to discuss side effects including ED and long lasting shrinkage.
Unfortunately it might be part of the trade off to get rid of the cancer. Before my op this was secondary as I was more worried about maintaining my continence. Five weeks post op I am lucky enough to be 95% in control of this, ED and shrinkage is the next part of the journey. More importantly of course is my journey to get rid of the cancer! I have already had good news about clear margins and I am currently awaiting the results of a PSA test before I have my post op appointment on 22nd Nov.

Good luck on your journey.

Brian.

User
Posted 15 Nov 2016 at 00:07

There is plenty of scientific explanation for this and nerve-sparing / non nerve-sapring doesn't make much difference.

Length

When they remove the prostate they also remove a section of the urethra and then join the ends back up. Basically, if you had a quite small prostate about 1" long then your penis will be 1" shorter. If you had a large prostate of 2" long you could lose up to 2". After the catheter has been removed it is important to exercise the penis regularly - pulling, massaging, tweaking, using the pump all help to pull the urethra down and the bladder hopefully comes with it. In some men, the bladder actually settles lower in the pelvis and some research suggests that the more you pump it & pull it, the better your chance of pulling the bladder down permanently.

Girth
This is the 'use it or lose it' bit. The cells of the penis are spongy and fill with blood when you get an erection. Without erections, the spongy tissue dies and cannot repair itself. The pump can offset some of this damage if used regularly but the problem is that it is hard to replicate what a healthy penis would be getting - erections during your sleep, on waking, watching the telly, sitting on the bus, etc etc. You can't pump all day & half the night. So the tissue dies.

John no longer has ED but the loss of size is a little bit of a problem - we can't do what were favourite positions because it simply isn't long enough. And he only had a small prostate. Mr P told us that some patients lose so much size that they can't stand up to wee anymore - they have to sit down because there isn't enough length to point anywhere.

It does seem to me that the hospitals & surgeons gloss over this a bit & I don't think the PCUK booklets spell it out either.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 15 Nov 2016 at 04:20
The hospital is still deciding on whether or not I can have surgery. My PET scan on Friday will be the final determinant. However, this conversation is frightening. I've researched a lot and it is only now that I'm realising that loss of size is also an issue. People keep telling me that if you are going to get cancer, this is the one to get. I'm sorry, but this is a nasty disease and sometimes I feel the news just keeps getting worse. It's four in the morning and I can't sleep.

Walter
User
Posted 15 Nov 2016 at 07:37

I don't think anyone on this forum has tried harder than I to maintain Erectile function and size. I've basically done everything and more to try to keep it.
The result 17 months post op is a penis at least 2" shorter when erect , although strangely seems normal flaccid. Lots of girth loss too and a distinct upward bend in it and a darker colour. I very definitely used to have 7" , and it may just be 5" now. It simply does not hit the spot and indeed as Lyn says , some of our favourites are now unachievable. However with Cialis , pump or injections , then penetration is now possible so we are luckier than some. The atrophy was strange as I seemed normal for a year and then very rapidly it appeared ???

User
Posted 15 Nov 2016 at 09:35

and just in case you might think you can avoid a reduction in the size of your penis by having HT/RT instead, be aware that this too can have this effect but obviously not for the reason of 'cut and shut'.

Barry
User
Posted 15 Nov 2016 at 21:36
Yup, my oh has lost size too. Two years after RRP, and with a walnut sized prostate, he has lost at least an inch. His refusal to use a pump, and his loss of libido hasn't helped his cause. Now he is getting some function back, we are rethinking positions.

BUT

The most important thing from the woman (or man) in your life's point of view is that you are alive. So start there. Fight everything in order of importance. In our case this was alive, continent, potent

Please don't try and fight everything at once, you'll never do it.
User
Posted 18 Nov 2016 at 16:38

I am now 18 months post op,  having selected RP, and have been using the vacuum pump to help with recovery.


However.. I have since developed PEYRONIES disease,  pronounced curvature of the penis, and I am convinced it is using the pump and restriction ring that has caused this.... anyone else know of or experienced this ?


 

User
Posted 18 Nov 2016 at 16:48

I've developed medium peyronies too. I'm 17 months post op. I use the pump every day but rarely use the rings. Laughably my Uro said there was no evidence that surgery can cause this. Laughably he also said that my bad adhesions in my abdomen were unlikely to be caused by surgery. Hahaaaaa WTF. He even tried to suggest I might have diverticulitis all of a sudden.
Never again !!!

User
Posted 18 Nov 2016 at 16:59

Thanks for the reply chris, ..my surgeon suggested it was probably caused by damage to the soft tissue....not much consistency here is there !  lol.. but to carry on with it for another 6 months (my next appointment) and see how it develops..... fingers crossed.


Obviously not just me this has happened to !

User
Posted 18 Nov 2016 at 17:50

Peyronie's is more often than not caused by trying to do penetration when not really hard enough, but it is also a listed side effect of RP (Chris, I don't know what planet your uro is on ... in the USA it is a recorded & acknowledged side effect although not considered to be common!) As far as I know, the medical advice is that men with Peyronie's should not use a vacuum pump - perhaps worth checking with the manufacturer Paul?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 18 Nov 2016 at 19:21
Had my PET-CT scan today. Still awaiting treatment decisions. Go for RP and lose length and girth or get combined hormone and chemo and lose hair and libido. This disease is nasty. Oh, I forgot about the erectile dysfunction.

I've been reasonably positive up until now, but treatment day is getting closer and negativity and anger starting.

Walter
User
Posted 18 Nov 2016 at 20:50

There is a very important side effect of treatment that you have not listed ... life!

A couple of side effects of RP are guaranteed - dry orgasms, infertility - and the guaranteed side effect of RT is infertility.

Everything else is possible but not guaranteed - HT does not always lead to loss of libido, not everyone on HT grows breasts, some people sail through RT without any problems and we have members that have had no major issues with chemo & have kept a full head of hair.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 18 Nov 2016 at 21:16
Lyn - you made me smile - thank you - Walter
User
Posted 23 Dec 2016 at 22:30
If life gives you lemons and you don't want lemons, don't settle, fight on
User
Posted 23 Dec 2016 at 23:49

Blimey - spent a good hour with our urologist/ surgeon yesterday who recommended surgery for a Gleason 6 (3+3) and not one mention of penile atrophy, loss of length or bendiness!

Shaking my head - thank you to forum members for complete openness!

Clare

'Time spent on reconnaissance is never wasted'

User
Posted 25 Dec 2016 at 01:00
Well I had RRP two years ago, ED for around 6 months, but Pump and Cialis kept everything flowing, now have normal potency (or maybe the occasional cialis helps - placebo? Who knows)

But my main comment here is that my erect penis has not changed since before the operations

I was able to masturbate to climax a week after the op and continued to do so during my recovery

But who knows how different experiences work

Edited by member 25 Dec 2016 at 23:07  | Reason: Not specified

 
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