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Post RRP - Discomfort in Perineum / Prostate site

User
Posted 01 Oct 2014 at 17:39

I had RRP on 5th August at the Royal Marsden.

My recovery was set back a few weeks when I was hospitalised for almost a month with an horrendous infection - but generally I think I'm doing OK and I'm mainly grateful that the op was a success (cancer removed entirely with clear margins).

I'm not surprised by the difficulties that I'm having controlling my bladder during the day-time and I understand that over time and with enough Pelvic Floor exercises this should resolve itself.

However what I am finding difficult, is the constant discomfort in my perineum / prostate site whether I'm walking, sitting down or bending down.

Has anyone else experienced this discomfort? If so any suggestions for how to alleviate it and any idea how long it might last would be greatly appreciated.

Thanks

David

 

 

User
Posted 01 Oct 2014 at 19:54
David

I am 5 months post Da Vinci op , I had the perineum discomfort on and off for about three months, mostly when sitting down or getting in and out of the car. Mostly it was discomfort not pain but occasionally quite painful. Not noticed it in the last couple of months.

Thanks Chris

User
Posted 02 Oct 2014 at 10:29

The operation is a big one with muscles cut, bits removed and heat used to seal up some areas on the inside where something was chopped off. Your op was only a few weeks ago and I think you will experience some discomfort for several weeks if not months to come especially when you move. I certainly did (mine was back in April/May) and in fact when I was at a classic car do just last weekend I experience a bit of a 'pull' when walking around the displays.

 

I think that with robotic surgery the outward signs, the entry ports, are so small and they heal up so quickly that it is difficult to relate them to what has gone on inside. This is far greater than you may think...in fact quite radical as the operation name suggests.

 

Keep taking the pills...it'll all get better in a few months. However, if you do feel the pain is a bit more than expected do get it checked out by your GP. A hernia is easy to come by at this stage and with only slight exertion. So, rest and recuperation are what are required....knock the weightlifting and canoeing on the head for a while http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif 

 

Great results BTW...happy days,

 

Steve

User
Posted 02 Oct 2014 at 21:50

Hi David,

Perineal pain/ache/tenderness is very common following robotic prostatectomy. This is a complaint that's, perhaps, 'overlooked'.

I have it mostly when sitting down or getting in and out of a vehicle but not troublesome just literally 'a pain in the a..e'!

As Steve so succinctly explained major surgery will cause a lot of tissue trauma whether laparoscopic or not. As the prostate is so close to the perineum....

It should eventually resolve and if it persists or worsens see your GP as suggested.

Best wishes,

Jacey

User
Posted 25 May 2019 at 16:44

Hi everyone, I am new to this site and found this thread very useful. Thank you for sharing your experiences. I had radical robotic /da Vinci prostatectomy in a private hospital in London about 3 months ago. The great news is clear margin and my PSA now undetectable.  I am rather uncomfortable when I sit down for long periods -especially in my car or hard chairs etc. I was interested to read that others have also had similar experience and am curious to know how long I might expect the discomfort to last; I am 14 weeks post op. Many thanks 

 

User
Posted 16 Aug 2019 at 17:02
6 months is probably still too early for major alarm bells to be honest. My testicles were too tender to even touch for 4 months. My thighs had no feelings at all for six months etc. I had bowel and bladder adhesions for 3 yrs I reckon which were so uncomfortable. Don’t ignore it but maybe give it 3 more months??

If life gives you lemons , then make lemonade

User
Posted 02 Oct 2014 at 07:14

Mine was about two months, but oddly worse when standing still. Walking was better. I'm afraid I didn't find a magic bullet, just heavy pain killers (under guidance of GP). Be careful to avoid constipation if you go down this route.

Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.

User
Posted 04 Oct 2014 at 15:53

Thanks chaps - your input is much appreciated.

I was starting to think I was the only one who had experienced this discomfort - so your experience and advice was very helpful.

Cheers

David

User
Posted 25 May 2019 at 18:52
It can take many months for all the internal damage from major surgery to heal, Jaime. I had my left kidney removed last September after my prostate MRI found unrelated early-stage kidney cancer. 8 months later and I still get pain in my side if I overdo things. There’s no magic wand - time will sort it out.

User
Posted 17 Aug 2019 at 11:46

What Chris J said plus might be worth flagging up with your doctor for peace of mind.

Ido4

User
Posted 17 Aug 2019 at 20:16

thank you both , it really helps to hear from other people.

User
Posted 17 Aug 2019 at 22:30

Hi Jaime

I had my RALP at the end of May 2019. Surface wounds from the Robot have healed nicely. Frankly I had more bruising from the 28 days of Blood thinner injections. I probably only take a couple of paracetamol every few days.

Still got a little incontinence so I wear a Tena 2 throughout the day and something a bit bigger at night just in case.

So at 11 weeks I think I have healed pretty well if you are looking for a comparison. Wish you all the best.

User
Posted 17 Aug 2019 at 22:33

Jaime

Also, I had more problems sitting after the Biopsy compared to the RALP. I was very uncomfortable. I have had no problems sitting since the OP.

User
Posted 27 Aug 2019 at 17:27

Hi J

saw you post i'm 3.5 months post Rp and im having the same thing in the perenium discomfort when i sit on any firm chair or my car i have a pillow on the seats 

i tend to lean on one cheek still feels like a swollen thing in there cant ride my motorbike bladders doing ok i can make the loo little leakage if i stand for a long period  psa undetectable and clear margins tho follow up in jan

walking is no problem and it helps tbh 

so i'm kinda hoping that each one of us takes time to heal but if i get to 6 months ill call the doctor 

bike seasons nearly over anyway   

let me know how you are doing its good to know we are not alone and its felt like it for me 

my dog doesn,t undersatnd !

User
Posted 19 Feb 2020 at 03:51

Hi Guys,

I am new to this site but I would like to add my experiences to those already posted on-line. My RP was undertaken in Hong Kong about 12 weeks ago. I am 72 years of age. Post Op I have generally felt fine. I have very little leakage, the wounds have healed well and body functions are almost back to normal. My first PSA reading after the operation was < 0.1 but I did have some initial pain in my penis and scrotum area so I took medication to prevent a possible infection. The pain has almost gone but there is still some residual discomfort.

However, my current problem is a constant pain in my rectum/anus area. This is much better when I am not active and during periods of sleep. I have been concerned why this has not improved after almost 3 months so the advice of others in this forum is comforting. My Gleason score was 8 before the operation which placed me in the high risk bracket and my longer term concern is that cancer will return, possibly in my bones. Any pain that lingers increases the anxiety and further testing may be necessary. I have my next PSA reading in early April. I have agreed with my doctor to review my current issues in about 3 months time. If there is no improvement then I may have another PET scan and an internal investigation of my rectum. 

I would be pleased to hear any advice other sufferers may wish to give.

Regards, John

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User
Posted 01 Oct 2014 at 19:54
David

I am 5 months post Da Vinci op , I had the perineum discomfort on and off for about three months, mostly when sitting down or getting in and out of the car. Mostly it was discomfort not pain but occasionally quite painful. Not noticed it in the last couple of months.

Thanks Chris

User
Posted 02 Oct 2014 at 07:14

Mine was about two months, but oddly worse when standing still. Walking was better. I'm afraid I didn't find a magic bullet, just heavy pain killers (under guidance of GP). Be careful to avoid constipation if you go down this route.

Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.

User
Posted 02 Oct 2014 at 10:29

The operation is a big one with muscles cut, bits removed and heat used to seal up some areas on the inside where something was chopped off. Your op was only a few weeks ago and I think you will experience some discomfort for several weeks if not months to come especially when you move. I certainly did (mine was back in April/May) and in fact when I was at a classic car do just last weekend I experience a bit of a 'pull' when walking around the displays.

 

I think that with robotic surgery the outward signs, the entry ports, are so small and they heal up so quickly that it is difficult to relate them to what has gone on inside. This is far greater than you may think...in fact quite radical as the operation name suggests.

 

Keep taking the pills...it'll all get better in a few months. However, if you do feel the pain is a bit more than expected do get it checked out by your GP. A hernia is easy to come by at this stage and with only slight exertion. So, rest and recuperation are what are required....knock the weightlifting and canoeing on the head for a while http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif 

 

Great results BTW...happy days,

 

Steve

User
Posted 02 Oct 2014 at 21:50

Hi David,

Perineal pain/ache/tenderness is very common following robotic prostatectomy. This is a complaint that's, perhaps, 'overlooked'.

I have it mostly when sitting down or getting in and out of a vehicle but not troublesome just literally 'a pain in the a..e'!

As Steve so succinctly explained major surgery will cause a lot of tissue trauma whether laparoscopic or not. As the prostate is so close to the perineum....

It should eventually resolve and if it persists or worsens see your GP as suggested.

Best wishes,

Jacey

User
Posted 04 Oct 2014 at 15:53

Thanks chaps - your input is much appreciated.

I was starting to think I was the only one who had experienced this discomfort - so your experience and advice was very helpful.

Cheers

David

User
Posted 19 Mar 2019 at 19:58
thanks to all the guys who have posted their replies, it certainly has helped me: cheers
User
Posted 25 May 2019 at 16:44

Hi everyone, I am new to this site and found this thread very useful. Thank you for sharing your experiences. I had radical robotic /da Vinci prostatectomy in a private hospital in London about 3 months ago. The great news is clear margin and my PSA now undetectable.  I am rather uncomfortable when I sit down for long periods -especially in my car or hard chairs etc. I was interested to read that others have also had similar experience and am curious to know how long I might expect the discomfort to last; I am 14 weeks post op. Many thanks 

 

User
Posted 25 May 2019 at 18:52
It can take many months for all the internal damage from major surgery to heal, Jaime. I had my left kidney removed last September after my prostate MRI found unrelated early-stage kidney cancer. 8 months later and I still get pain in my side if I overdo things. There’s no magic wand - time will sort it out.

User
Posted 26 May 2019 at 08:45

thank you - that is reassuring

User
Posted 16 Aug 2019 at 16:49

Good afternoon everyone,

I wanted to check in again with an update as I am now 6 months post radical prostatectomy.  I am still uncomfortable , especially when seated.  I'm curious to hear from others because six months feels like enough time to heal but welcome feedback from others with their experience.

Enjoy the weekend !

 

 

User
Posted 16 Aug 2019 at 17:02
6 months is probably still too early for major alarm bells to be honest. My testicles were too tender to even touch for 4 months. My thighs had no feelings at all for six months etc. I had bowel and bladder adhesions for 3 yrs I reckon which were so uncomfortable. Don’t ignore it but maybe give it 3 more months??

If life gives you lemons , then make lemonade

User
Posted 17 Aug 2019 at 11:46

What Chris J said plus might be worth flagging up with your doctor for peace of mind.

Ido4

User
Posted 17 Aug 2019 at 20:16

thank you both , it really helps to hear from other people.

User
Posted 17 Aug 2019 at 22:30

Hi Jaime

I had my RALP at the end of May 2019. Surface wounds from the Robot have healed nicely. Frankly I had more bruising from the 28 days of Blood thinner injections. I probably only take a couple of paracetamol every few days.

Still got a little incontinence so I wear a Tena 2 throughout the day and something a bit bigger at night just in case.

So at 11 weeks I think I have healed pretty well if you are looking for a comparison. Wish you all the best.

User
Posted 17 Aug 2019 at 22:33

Jaime

Also, I had more problems sitting after the Biopsy compared to the RALP. I was very uncomfortable. I have had no problems sitting since the OP.

User
Posted 27 Aug 2019 at 17:27

Hi J

saw you post i'm 3.5 months post Rp and im having the same thing in the perenium discomfort when i sit on any firm chair or my car i have a pillow on the seats 

i tend to lean on one cheek still feels like a swollen thing in there cant ride my motorbike bladders doing ok i can make the loo little leakage if i stand for a long period  psa undetectable and clear margins tho follow up in jan

walking is no problem and it helps tbh 

so i'm kinda hoping that each one of us takes time to heal but if i get to 6 months ill call the doctor 

bike seasons nearly over anyway   

let me know how you are doing its good to know we are not alone and its felt like it for me 

my dog doesn,t undersatnd !

User
Posted 04 Sep 2019 at 18:00

Hi James88

thank you for your message - I read with great interest. I have just had a PSA test,  mine is also undetectable so congratulations to both of us!  I mentioned my discomfort to my surgeon and he arranged for an ultra sound of my pelvis/abdomen/scrotum which was all clear. Great news.  Like you, I sit on a cushion in the car and avoid sitting on hard chairs etc. I now work standing up, including on my laptop. I am now 7 months post op.  I have not tried to get back on my mountain bike!  Walking is fine for me, likewise sleeping.  I am very lucky;  dry from day 1 thanks to the surgeon and retzius sparing technique.  I guess we both just need to heal inside; I keep being reminded that robotic removal of the prostate is a major surgical procedure. thanks for sharing your story.

 

User
Posted 05 Sep 2019 at 17:07

I am 4 weeks after Robotic surgery and still have pain when coughing etc. I am sometimes concerned as to whether the pain is due to overzealous  Kegel exercise and was in fact advised to slow down for few days.

User
Posted 17 Nov 2019 at 19:28

Hi Jaime and all 

just an update to my sitting problem still can’t sit down on hard seats straight I had an mri and all clear flow test all clear 2nd 5 month psa still undetectable now my consultant has referred to a pain team ! Just a thought I did have lymph nodes removed when I had my robotic surgery could this cause the sitting problem ? as it’s all still quite swollen inside I have good days and bad days walking helps but sometimes I get a burning pain in my old boy I’ve been swabbed and dipped so so infection could it still all be nerves screaming and confused a bit like me tbh as it’s now impacting my quality of life on a day to day basis .... any help or advice would be really appreciated 

another thought could it be fluid retention around the bottom as I’d had my lymph’s removed or is this only legs swollen which I don’t suffer with 

 

Thanks james

 

Edited by member 17 Nov 2019 at 19:44  | Reason: Not specified

User
Posted 17 Nov 2019 at 20:05
Hi James, at 5 months I still had all sorts of pains tbh. I had adhesions where things had healed to other things they shouldn’t have healed to !! I could barely touch my testicles for up to 4 months the pain was so immense. It took 6 months before I could feel my thighs whilst towelling after showering .....

Yes I had burning and sitting problems too. I think it’s still too early for you to be over worrying all the symptoms although I understand fully. It’s a major surgery remember. And I mean quite major. Lots of stuff rearranged and meddled with.

If life gives you lemons , then make lemonade

User
Posted 17 Nov 2019 at 20:08
And I had 18 lymph’s removed — 5 cancerous bi-lateral

If life gives you lemons , then make lemonade

User
Posted 17 Nov 2019 at 21:04

Hi Chris 

yes I’m a bit numb on my right inner thigh to 

you are right I’ve been posting on here I suppose everyone heals at different speeds I have good and bad days but 

it really is different pains on different days but if I could just sit down I could cope with anything going forward 

thanks for posting it’s reassuring I’m not alone

James   

User
Posted 28 Nov 2019 at 02:51

Hey guys, just came across this site.  I had surgery at the end of August so I'm at about 12 weeks.  I still have fairly significant perineal pain that seems to get a lot worse when sitting throughout the day at work.  I do get up as much as I can.  When it gets worse it seems to resonate throughout my penis, which is very sore in random spots when I squeeze it.  Also, I seem to have spasms that cause leakage.  Over the weekends I can relax and make myself comfortable and by Sunday night the pain is pretty much gone, and no leakage at all.  Then I go back to work and it starts all over again.

My doctor says it will just take time, but I'd like to hear from others that had/have the same problem.  It hurts right now!  I'll probably try some ice.

By the way, to add to some other comments on here, I do have swelling around my left lymph node and numbness right below there in the groin area.  Again, being told it will take time.

Thanks.

Rich

 

 

User
Posted 28 Nov 2019 at 07:23

Rich

Do you have a urine infection or a strong/ unpleasant smelling urine or discharge ? A few of us who had robotic surgery had issues with clip migration. 

Thanks Chris

User
Posted 28 Nov 2019 at 15:55

No I don’t have a UTI, I was checked just last week.  Every once in a while it does smell foul, but that could just be what I’m eating.  I never heard of the clip migration issue, but after reading about it the symptoms do seem similar.  I’ll ask my doctor.  

But if it goes away with rest, it wouldn’t be a clip issue, right?

User
Posted 28 Nov 2019 at 17:19

Rich

A migrated clip can float around in the bladder or migrate into the urethra, one guy even passed one when urinating, so my unqualified thoughts are that when resting, a clip could settle in spot where it causes no problem. Kidney stones or particles of stone could also have similar symptoms. Just to note the clips are not normally seen on x-rays, and not all scans can see them either.

Hope you get it sorted.

Thanks Chris

User
Posted 03 Dec 2019 at 03:25

So I paid close attention during the long weekend and I don't think it is the clip.  It seems to only happen when there is pressure put on the perineum area.  I still have a lot of soreness in the bladder area (inside below my belly button) as well.  Not bad pain, just tenderness.  Has anyone had any of this after 3 months?  I guess it can take a long time.  I'm very active so maybe I'm expecting too much.

Thanks.

User
Posted 07 Dec 2019 at 14:53

This thread has reassured me somewhat. I am 8 weeks after robotic laparascopic prostatectomy and have recently started getting aches like Rich said. Ache inside penis or back of scrotum or perineum, more when I stand or walk but the penis pain can come on in early hours of morning. My surgery seemed straightforward and continence pretty good but this feels like a set back.  But it sounds more common so maybe I just need to be patient. My GP did check urine for infection.

I had been increasing distances walked and had returned to (desk based) work a couple of weeks ago (but no running let alone cycling yet). I didn't think I  had overdone it maybe I have. I also wondered if Kegels weren't helping as it's all in or near pelvic floor? And  wondering about hernia but I can't feel any lumps or protusions. I have consultant planned follow up in 10 days so I will ask then

Gerard

User
Posted 07 Dec 2019 at 15:13
A huge number of nerve endings get cut, bashed & burnt during RP and can send pain messages to the brain as they are healing.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Dec 2019 at 19:55

Hi everyone , I am very interested to read about your experiences. I have just had an undetectable PSA result , so fantastic news. My RP was ten months ago. Thought I would mention that I still get uncomfortable sitting down, especially on firm chairs/seats. The sensation varies - sometimes an ache, other times feels sore, hard to pinpoint.  My Consultant reminded me that ten months is still early in my recovery and did not seem surprised. Hope others find this useful, thank you all for sharing .

User
Posted 19 Feb 2020 at 03:51

Hi Guys,

I am new to this site but I would like to add my experiences to those already posted on-line. My RP was undertaken in Hong Kong about 12 weeks ago. I am 72 years of age. Post Op I have generally felt fine. I have very little leakage, the wounds have healed well and body functions are almost back to normal. My first PSA reading after the operation was < 0.1 but I did have some initial pain in my penis and scrotum area so I took medication to prevent a possible infection. The pain has almost gone but there is still some residual discomfort.

However, my current problem is a constant pain in my rectum/anus area. This is much better when I am not active and during periods of sleep. I have been concerned why this has not improved after almost 3 months so the advice of others in this forum is comforting. My Gleason score was 8 before the operation which placed me in the high risk bracket and my longer term concern is that cancer will return, possibly in my bones. Any pain that lingers increases the anxiety and further testing may be necessary. I have my next PSA reading in early April. I have agreed with my doctor to review my current issues in about 3 months time. If there is no improvement then I may have another PET scan and an internal investigation of my rectum. 

I would be pleased to hear any advice other sufferers may wish to give.

Regards, John

User
Posted 19 Feb 2020 at 08:05
4.5 years since my op and I can still get a burning sensation where I feel my prostate used to be. Usually this is following physical work it's very mild and I hardly notice it really.

12 weeks out from your op you will still have raw bits so don't be surprised if you feel some pain.

User
Posted 19 Feb 2020 at 10:08
You are dramatically overthinking;

- new tumours couldn’t have sprung up in the area just in the 3 months since your op and certainly not to the extent that they would cause pain

- cancer cells that had been left behind wouldn’t cause pain anyway

- nerves in the area have been cut, sliced and burnt - it can take a long time for nerve damage to repair, sometimes years but certainly not just 3 months

What you are describing is very common and normal so I am not sure what you were expecting so soon after the op; were you not given any leaflets or advice about recovery?

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

User
Posted 24 Feb 2020 at 22:24

John EP. I was still getting pains and /or "full" feeling in anus/rectal area 4 months after robotic prostatectomy.  Could last 12 hours or so then fade - or move to penis, perineal area or scrotum.  Nearly 5 months now and it has just settled I hope.

As others have said, there is a lot of nerve damage and it takes time. Walking seemed to help.

Gerard

 
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