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User
Posted 18 Jul 2022 at 12:09

Hi everyone.

I'm 52, approximately 2 weeks pre-RARP, diagnosed with localized prostate cancer, gleason 3+4, regular depression and anxiety sufferer.

I've been freaking out about all the side effects at some point since I was diagnosed but the one I can't deal with is losing the length of the penis.  I know why it happens...the joining of the bladder to the urethra and loss of blood flow...but I'm small to average and I think any loss is going to cause me some serious mental and emotional health issues.

Does everyone experience this shortening?  My surgeon when asked kind of dismissed it and said any loss would be subjective and not actual, whereas a specialist nurse said it happens to all men and is permanent!

How are others coping with this, physically and mentally?

Any help/advice/encouragement would be greatly appreciated.  Thank you.

User
Posted 18 Jul 2022 at 14:54

Age 50 and I am 10 weeks post open RP.

I am almost fully continent and wear no pads at night and one Tena 1 by day.  Have no restrictions on day to day activities and generally feeling pretty good.

My flaccid penis length looks about the same.  I did not get the ruler out pre and post but had heard all the horror stories and was pleasantly surprised.  I now keep my pubes trimmed for hygiene purposes but maybe also makes yer man look a bit bigger.

I have used a pump since the operation and the so called erections are pretty sad affairs particularly girth-wise. Going for a Caverject trial tomorrow so will see how that goes.  Maybe I will have lost length when erect - no idea.

Having cancer is no fun but hopefully the RP gets rid of it and you can work on solutions for everything else.  Best wishes.

User
Posted 18 Jul 2022 at 15:17

Hi 1Bud

I'm 74 and had my RP 8 months back. I have always been dry at night and since a month or so back, I am 99% continent. I. E. most days I am 100% and occasionally I may have a drip. I do not need to wear a pad at home and when I go out I wear a very thin pad or shield, mostly for confidence. My penis has not changed in length or girth, but it is still a useless tool, other than for peeing. Not that it was that great pre-op.

You are much younger and I'm sure you will be fine. 

Good luck

User
Posted 18 Jul 2022 at 12:54
Important to understand that it is often length and girth that are affected. I think it happens to most but not all men who opt for RP, partly due to losing some of the urethra but also as a result of atrophy - if the corpus cavernosa are not filled with blood regularly, they scar and stop being able to expand. The same shrinkage is often experienced by men on HT even though their urethra is intact. It isn't a foregone conclusion though - atrophy can be avoided by regular use of the vacuum pump to replace some of the lost natural erections that many men have during the day and while sleeping, and frequent stimulation to encourage blood flow will also help even if you are only achieving a semi.

Longer term, if there is a loss of length it may simply be that you need to rethink positions - we can no longer have sex 'doggy style' as it slips out so other positions have become new favourites.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Jul 2022 at 12:58

I had RT not RP so I can't offer a personal experience. From what people have posted on here in the past, yes you will lose some length. The most severe case was two inches (could have been exaggerating) I'm not too sure how many of us got a ruler out and measured things. You're also likely to be dealing with some element of ED. I can't see how your surgeon can possibly say this is subjective.

When it comes down to it. We got cancer, as will every man eventually. It needs treatment, all treatments have side effects, we have to live with the side effects.

Just seen RnBs post. Maybe we need a poll. Could all people who had RP post whether they:

1. Lost length 

2. Stayed the same 

3. Got bigger

 

(if 3. let me know the surgeons name.)

 

 

 

 

Dave

User
Posted 18 Jul 2022 at 14:36

The incontinence thing seems to vary widely. I guess you're just being given a worse-case scenario.

I was dry at night immediately following the removal of the catheter and completely dry after 10 days. However, I did start the pelvic floor exercises as soon as I knew I'd be having surgery and they were already in good shape - I put that down to very good core strength from spending a lot of time cycling and also moving around on a boat during the dive season but that's just a guess.

After over 35 years of really bad hesitancy and poor flow rate, being able to pee on demand has been life-changing for me and that far outweighs the other side-effects.

User
Posted 23 Jul 2022 at 20:04

I hate to be a party-pooper but this was written in 2007 when there was still a hope that full nerve sparing would pretty much eradicate erectile dysfunction. As has been shown in the years since, a man can have full nerve sparing and never have an erection again (either naturally or with mechanical/ chemical assistance) or can have only partial nerves spared but go on to fully recover. Either way, the % of men who recover sufficiently for unaided penetrative sex is still depressingly low.

The research you have flagged up from 2007 concluded (reasonably) that if a man has bilateral nerve sparing and goes on to regain full erectile function, he will not experience atrophy. The problem is that so many men (about 40%) never regain full natural function and atrophy / loss of length is therefore almost certain.

Thre is also the matter of removed urethra - John's surgeon told us about an RP patient of his who had a particularly large prostate. He lost so much off the length of his penis he was unable to urinate standing up - sadly that was a permanent after-effect for him

Edited by member 23 Jul 2022 at 20:06  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Sep 2022 at 17:16

Originally Posted by: Online Community Member

I’m not sure how to link the video but we watched on YouTube ‘optimizing sexual function outcomes in the prostate cancer patient’ Dr Mulhall doing the presentation. It is from 2014 but we found it really interesting and worth watching.

https://www.youtube.com/watch?v=4ELsojPFNV8

There you go Elaine...

User
Posted 28 Sep 2022 at 22:23
I had surgery aged 48 yrs old. I’m now 55.

The penis shortening is gradual but guaranteed as your insides find their new normal. I too didn’t notice much change until the 2 yr mark , even though very regular pump usage and tablet taking. Essentially you’ve had 3 to 4 cm removed from your urethra which is roughly 1 1/2 “ , and that can’t ever be found again. Good luck with recovery. I was doing excellent 2 1/2 yrs post op with the return of a great sex life , but now the cancer has spread again and I’m incurable it’s taken a bit of a dive. Not gone , but not the same. Just enjoying the time I have left !!

User
Posted 18 Aug 2023 at 10:49

Yeah the penis should recover most of its length as the urethra has been shortened but it’s very elastic and will adapt. I didn’t notice any shortening myself. I took a pic just before I went in for surgery and then pretty much as soon as I was out and back in my room was comparing with the pic….a nurse walked in so had to do some explaining 🤪😵‍💫🤣

User
Posted 24 Jan 2024 at 17:46

I had RARP and lost an inch but I can cope with a 10% reduction.

User
Posted 02 Jul 2024 at 08:27

I had brachytherapy nearly two years ago and 🤞all seems well, but yes there has been a loss in both length and girth...but not sure there's a lot I can do about it, just grateful that the PSA is way down and I still can't have erections

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User
Posted 18 Jul 2022 at 12:44
I didn't get a tape measure out but I'm sure this didn't happen to me.
User
Posted 18 Jul 2022 at 12:54
Important to understand that it is often length and girth that are affected. I think it happens to most but not all men who opt for RP, partly due to losing some of the urethra but also as a result of atrophy - if the corpus cavernosa are not filled with blood regularly, they scar and stop being able to expand. The same shrinkage is often experienced by men on HT even though their urethra is intact. It isn't a foregone conclusion though - atrophy can be avoided by regular use of the vacuum pump to replace some of the lost natural erections that many men have during the day and while sleeping, and frequent stimulation to encourage blood flow will also help even if you are only achieving a semi.

Longer term, if there is a loss of length it may simply be that you need to rethink positions - we can no longer have sex 'doggy style' as it slips out so other positions have become new favourites.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Jul 2022 at 12:58

I had RT not RP so I can't offer a personal experience. From what people have posted on here in the past, yes you will lose some length. The most severe case was two inches (could have been exaggerating) I'm not too sure how many of us got a ruler out and measured things. You're also likely to be dealing with some element of ED. I can't see how your surgeon can possibly say this is subjective.

When it comes down to it. We got cancer, as will every man eventually. It needs treatment, all treatments have side effects, we have to live with the side effects.

Just seen RnBs post. Maybe we need a poll. Could all people who had RP post whether they:

1. Lost length 

2. Stayed the same 

3. Got bigger

 

(if 3. let me know the surgeons name.)

 

 

 

 

Dave

User
Posted 18 Jul 2022 at 13:19

Hi LynEyre

Thanks for responding.  I didn't realise girth was also affected but that makes sense.  

A lot of men whose stories/youtube posts/other forums I've been on are in the fortunate position of having a wife or partner.  I'm single and will have to face it alone, it's not really something family can help me with.

Does the amount of length lost relate to how big the prostate is?  Mine is not enlarged, about 22ml and considered normal for my age.

Cheers.

 

User
Posted 18 Jul 2022 at 13:32

Hi Dave64,

Thanks for responding.

Yes, the surgeon saying it was 'subjective' was somewhat bewildering.  I think it is a subject they try to avoid when really they should be telling you all the facts.  The real shocker for me was he told me he expects me to have NO control of my bladder for several months!  Is that him just telling me the worst case scenario and covering all eventualities?  Have others been told that when they saw their surgeons?  The specialist nurses have all said it's quite unlikely.  

Cheers.

User
Posted 18 Jul 2022 at 14:36

The incontinence thing seems to vary widely. I guess you're just being given a worse-case scenario.

I was dry at night immediately following the removal of the catheter and completely dry after 10 days. However, I did start the pelvic floor exercises as soon as I knew I'd be having surgery and they were already in good shape - I put that down to very good core strength from spending a lot of time cycling and also moving around on a boat during the dive season but that's just a guess.

After over 35 years of really bad hesitancy and poor flow rate, being able to pee on demand has been life-changing for me and that far outweighs the other side-effects.

User
Posted 18 Jul 2022 at 14:54

Age 50 and I am 10 weeks post open RP.

I am almost fully continent and wear no pads at night and one Tena 1 by day.  Have no restrictions on day to day activities and generally feeling pretty good.

My flaccid penis length looks about the same.  I did not get the ruler out pre and post but had heard all the horror stories and was pleasantly surprised.  I now keep my pubes trimmed for hygiene purposes but maybe also makes yer man look a bit bigger.

I have used a pump since the operation and the so called erections are pretty sad affairs particularly girth-wise. Going for a Caverject trial tomorrow so will see how that goes.  Maybe I will have lost length when erect - no idea.

Having cancer is no fun but hopefully the RP gets rid of it and you can work on solutions for everything else.  Best wishes.

User
Posted 18 Jul 2022 at 15:17

Hi 1Bud

I'm 74 and had my RP 8 months back. I have always been dry at night and since a month or so back, I am 99% continent. I. E. most days I am 100% and occasionally I may have a drip. I do not need to wear a pad at home and when I go out I wear a very thin pad or shield, mostly for confidence. My penis has not changed in length or girth, but it is still a useless tool, other than for peeing. Not that it was that great pre-op.

You are much younger and I'm sure you will be fine. 

Good luck

User
Posted 18 Jul 2022 at 20:09

I was 53 at RARP.
My Uro told me I would have shortening, I had the top RARP Surgeon at Addinbrooks and I can't remember if he mentioned it or not. It turns out that I didn't lose any length or girth.
I read that loss of girth and length can be caused by atrophy and I used the pump twice a day atleast in the early days and have no change in size even after 5.5 years of ED with limited effect from meds.
I also read that some Surgeons try to pull the bladder or bladder neck down slightly to preserve length, perhaps he felt sorry for me.
I don't think the Surgery causes loss of girth

Re continence I was dry at night from day one and pad free at about 7 weeks. I had urge and frequency issues which were and are manageable. About a year in I developed a stricture and now self catheterise about two or three times per week which is no problem once you get the knack.

Good luck whatever you choose

Cheers Bill

Edited by member 18 Jul 2022 at 20:10  | Reason: Not specified

User
Posted 18 Jul 2022 at 20:30

Hi Bill

Thanks for your response.

From what I'm learning it is important to keep the blood flowing with whatever method works best for you.

Can you not have a surgical procedure to correct the stricture?

Thanks for sharing.

User
Posted 18 Jul 2022 at 20:52

Yes re blood flow, also daily cialis  5mg.

Yes My flow deteriorated  slowly until it reduced so much I was taking 10 minutes or more to pee. Max flow 3 ml/sec. Then I had a dilation and do self catheterisation now indefinitely to keep it open, although it's gradually closing and getting more difficult to get through. I was told they might need to repeat the dilation in the future.

 

Cheers

Bill

User
Posted 23 Jul 2022 at 20:04

I hate to be a party-pooper but this was written in 2007 when there was still a hope that full nerve sparing would pretty much eradicate erectile dysfunction. As has been shown in the years since, a man can have full nerve sparing and never have an erection again (either naturally or with mechanical/ chemical assistance) or can have only partial nerves spared but go on to fully recover. Either way, the % of men who recover sufficiently for unaided penetrative sex is still depressingly low.

The research you have flagged up from 2007 concluded (reasonably) that if a man has bilateral nerve sparing and goes on to regain full erectile function, he will not experience atrophy. The problem is that so many men (about 40%) never regain full natural function and atrophy / loss of length is therefore almost certain.

Thre is also the matter of removed urethra - John's surgeon told us about an RP patient of his who had a particularly large prostate. He lost so much off the length of his penis he was unable to urinate standing up - sadly that was a permanent after-effect for him

Edited by member 23 Jul 2022 at 20:06  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Jul 2022 at 20:27

I’m not sure how to link the video but we watched on YouTube ‘optimizing sexual function outcomes in the prostate cancer patient’ Dr Mulhall doing the presentation. It is from 2014 but we found it really interesting and worth watching.

User
Posted 04 Sep 2022 at 17:16

Originally Posted by: Online Community Member

I’m not sure how to link the video but we watched on YouTube ‘optimizing sexual function outcomes in the prostate cancer patient’ Dr Mulhall doing the presentation. It is from 2014 but we found it really interesting and worth watching.

https://www.youtube.com/watch?v=4ELsojPFNV8

There you go Elaine...

User
Posted 04 Sep 2022 at 22:43
Quote:
Quote:

 

https://www.youtube.com/watch?v=4ELsojPFNV8

There you go Elaine...



Thank you Bob 👍

User
Posted 28 Sep 2022 at 21:40

Hi All,

I am 4 weeks post Robot Assisted and 2 weeks post catheter removal. My surgeon did warn me about penis shortening but at the time I could not of given a toss as the focus was on getting it out. I only had a small amount of cancerous cells (4 out of 18 samples from Biopsy).

I can't really say I have noticed a shorter willy. I have only had the catheter out for 2 weeks now so have not really had the courage to road test it. I did however wake up when I had the catheter with a semi and got a right panic on. Little painfull too. I have had all my nerves spared and have been told I should get back full function. Well with exception to ejaculate. Starting to regain continence and recovering well and back at work. At 54 it's all been quite a shock and a rollercoaster of a ride. Feel fortunate it was found so early considering I had no symptoms and was picked up with yearly general health check.

User
Posted 28 Sep 2022 at 21:59

10 days past RALP. 2 days since catheter removal. Same not noticed any shortening of the old man either. Nerves spared on both sides but no erection yet. Have achieved a dry orgasm though which is at least something...

Incontinence is the issue at the moment. Very frustrating but I guess all these things take time to heel. Keep reminding myself I've major abdominal surgery.

Best of luck with the recovery

Jim

 

User
Posted 28 Sep 2022 at 22:23
I had surgery aged 48 yrs old. I’m now 55.

The penis shortening is gradual but guaranteed as your insides find their new normal. I too didn’t notice much change until the 2 yr mark , even though very regular pump usage and tablet taking. Essentially you’ve had 3 to 4 cm removed from your urethra which is roughly 1 1/2 “ , and that can’t ever be found again. Good luck with recovery. I was doing excellent 2 1/2 yrs post op with the return of a great sex life , but now the cancer has spread again and I’m incurable it’s taken a bit of a dive. Not gone , but not the same. Just enjoying the time I have left !!

User
Posted 29 Sep 2022 at 08:07

Ah thanks Chris for the info. Thought the shortening would be instant rather than medium term. It's the one thing the clinicians don't seem to talk about, ED and Incontinence but not this.

Edited by member 29 Sep 2022 at 08:08  | Reason: Not specified

User
Posted 01 Oct 2022 at 16:10

I didn’t notice any shortening and being an engineer I measured the night before surgery then it was one of the first things I did when I got back to my room. Had to do some explaining when the nurse walked in while I was updating my dataset with chap on show 🤪 Be mindful that the urethra is very elastic so effects can be less than you think although Bollinge may beg to differ 🤭😶

User
Posted 18 Aug 2023 at 10:23

I’m three weeks post RP and I have been surprised by how much control I’ve had with my bladder since the catheter was removed a few days ago. I’ve had some leakage but nowhere near what I’d expected. 

As someone with a psychological block pre-op to urinating in public toilet urinals, I’m intrigued to see whether I will be similarly affected when I’m next in that situation. 

As for my penis, it does appear to have lost some length and having a lot of foreskin that stayed covering my glans when I had erections, I now have many folds of skin when my penis is in its natural state. I’ve read that length can return over time so here’s hoping. 

User
Posted 18 Aug 2023 at 10:40

I was like you Open4321 although Im having HT/RT, not RARP. I think the term is a grower and not a shower🤣

I noticed much more loose foreskin but started using the SomaCorrect Vacum pump daily and things have improved. I think the term use it or lose it is appropriate…so maybe get pumping as soon as it’s safe for you.

User
Posted 18 Aug 2023 at 10:49

Yeah the penis should recover most of its length as the urethra has been shortened but it’s very elastic and will adapt. I didn’t notice any shortening myself. I took a pic just before I went in for surgery and then pretty much as soon as I was out and back in my room was comparing with the pic….a nurse walked in so had to do some explaining 🤪😵‍💫🤣

User
Posted 18 Aug 2023 at 11:25
LOL - I am a grower rather than a shower and I took a pic of mine complete with catheter just for the memory LOL - it had literally shrunk inside my body and I think a few of the nurses were surprised when they changed the dressings - well at least they seemed to be coming back for a look rather frequently :)

The first time I used the VED it was definitely a couple of cm shorter - now a few weeks on with VED exercise it seems to be recovering and actually increasing in girth - certainly stretching all the skin below the glans. But at rest it is a very insignificant looking object - so I won't be appearing on "Naked Attraction" any time soon :)

User
Posted 18 Aug 2023 at 11:34

I’d only be concerned if the good lady rebrands me as Justin 😵‍💫

User
Posted 21 Aug 2023 at 20:11

Late to the game. Lost length 100%.

Edit:Thought I was replying to a 2023 post. 😂

J

Edited by member 21 Aug 2023 at 20:18  | Reason: Not specified

User
Posted 21 Aug 2023 at 20:36

Hope you didn’t lose 100% 👀😵‍💫🫢 You’ll be up there with Bollinge 🧐🤪

User
Posted 22 Aug 2023 at 18:41

Funny. 😂

User
Posted 24 Jan 2024 at 17:29
mmm..7 days post RALP. Day 1 after catheter removal. I'm small anyway but currently micro to disappearing. It's too early to tell I know and I've started tadalafil but definitely I've lost length as far as I can tell. But it does also feel like it's down to blood flow - not happening (yet). I'm 61.
User
Posted 24 Jan 2024 at 17:46

I had RARP and lost an inch but I can cope with a 10% reduction.

User
Posted 02 Jul 2024 at 08:27

I had brachytherapy nearly two years ago and 🤞all seems well, but yes there has been a loss in both length and girth...but not sure there's a lot I can do about it, just grateful that the PSA is way down and I still can't have erections

 
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