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Post RRP - Discomfort in Perineum / Prostate site

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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??
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 20 May 2023 at 18:14

9 days out of RARP surgery and today started with the pain - almost like severe constipation but my bowel movements have been quite loose so jumped on to Google and found this conversation. So thanks for all of the comments and I now feel more comfortable that this is a typical issue and nothing to be concerned about.
Bladder control seems to be reasonable - very slight leakage and I know I have 30 secs to get to the loo after standing up - but I do seem able to start the flow on command and the bladder is emptying in one go - been a few years since I had that LOL

Watched a video on YouTube of the entire procedure today - I can post a link if anyone wants it - now I know why it takes a couple of months to heal LOL.

Edited by member 20 May 2023 at 18:16  | Reason: Not specified

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 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 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 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 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 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 17 Apr 2020 at 09:23

Great news Rokker. My Urologist thinks my issues could be down to scar tissue or even referred pain from issues I have with my lower back. My last PSA was 0.006 so I couldn't be happier about that. It would seem each of us has a slightly different experience and you might have to be prepared to wait a little longer for the pain to go. My pain, these days, is usually about 30 mins long after a pee then goes away until the next time. If I know there is no disease present I can live with that for now!

Cheers,

Mark

User
Posted 28 Sep 2022 at 18:21

Nick , due to having some problems with a stricture I have done numerous TWOCs and never failed. I make sure I am well hydrated before I get to the hospital, listen to the nurses and you should be fine.

My stricture was possibly caused by the catheter getting tugged out after getting stuck, it should just slide out, without any resistance or pain. If it gets stuck I would ask for a urologist to attend.

After three samples of around 200mls I was scanned to make sure I was voiding the bladder. Make sure you have some pads , the hospital will usually give you a few. I always took a waterproof cover for the car seat and a towel just in case of leaks, I never needed them.

Hope all goes well.

Thanks Chris 

 

User
Posted 29 Sep 2022 at 18:11

Hi Nick 

So I am doing the pelvic floor in different positions. Standing, sitting and laying on the floor. I am using the squeezy app to guide me. I found when doing the quick exercise I do sometimes leek a little when I relax. So this is day 3 for me since catheter removal. I think I may have seen a little improvement today. But I can be see it's going to take time. Fortunately I am dry at night and using 2 medium pads per day. I have found that if I am starting to leek a lot it's because I need to pee, I don't have that feeling that I had pre op that my bladder is full and I need to go. I also notice my flow is not as good as it was pre-op but I think there has been a bit of improvement today.

It is frustrating but I am sure things will get better for you.

User
Posted 05 Oct 2022 at 16:31

David, passing lots of urine down the outside of the catheter, known as bypassing, can be a sign of a blocked catheter. Are you still passing plenty of urine into the bag and does the bypassing reduce when laying down or at night.

You could get the catheter flushed out, but you were probably told do not let district nurses etc change your catheter. 

It can just be the catheter is a position where it is easier for the urine to come out of the penis instead of through the catheter. Best not to mess around with the catheter, you could call the ward that discharged you for advice 

Thanks Chris 

User
Posted 05 Oct 2022 at 19:57

David, I think it would be fair to say it is not what usually happens, I don't like using "normal" . Is there a problem, not necessarily but good that you are going to ring the hospital for advice. I am assuming the catheter is not trapped, kinked or bent and that you have the bag below the level of your bladder. Sometimes a bag change can help the flow,I don't know why, but many people on a Facebook catheter site say it solves the issue. 

Thanks Chris 

User
Posted 12 Nov 2022 at 21:36

Dennis ,I developed a stricture not long after surgery and had lots of dilatations and had a long period of doing daily self dilatation. The self catheterization could be the cause of the perineum pain either through rubbing, introducing an infection or dragging some debris into the urethra.

Thanks Chris 

User
Posted 13 Nov 2022 at 20:52

Wow Chris, you have certainly been on a challenging journey!

I am also in my 70s and try to keep myself active and fit. I consider myself very lucky that my PC was detected in a routine medical before I retired. I had no symptoms! I always feel so fortunate when I hear the experiences of men with advanced prostate cancer

I have a call with my consultant, (Name removed by moderator), on Friday when he will advise me of my latest PSA test. I will take the opportunity to advise of the ache from my perineum, although minor,  as it is not something we have discussed previously.

Best wishes for the future and managing your ailments. 

Dennis

 

 

Edited by moderator 13 Nov 2022 at 22:38  | Reason: Not specified

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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??
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.

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

User
Posted 25 Feb 2020 at 09:34

Dear Gerald

Thank you that explanation. It is really helpful. The description of the problems you encountered exactly mirror mine. Initially I was most concerned that I had another issue to contend with but I am more relaxed now. I just have to wait until April for my next PSA check which hopefully will still give me a reading below 0.1

Thanks again

Regards, John

 

User
Posted 02 Mar 2020 at 16:25

I am about 11 months post-op and I am getting perineal pain and a feeling like I need to pee when I don't! Buttock pain too and I think it is down to too much sitting down (I have a sedentary job). I have had this a couple of times since the operation and it usually clears in a week or so but this time it feels a bit worse with pain at the back of my leg (upper) and lower back pain. I suspect it is muscular and/or my insides sorting themselves out! I also need to cut back on coffee as I hear that can irritate the bladder! the pain isn't agonising, more a dull ache and a feeling of bladder needing to empty. Sometimes I get a pain in the shaft of my penis!

I will mention it to the consultant in April if no better but I suspect he will say these things can happen!

Mark

User
Posted 29 Mar 2020 at 21:34
Hi Mark , I hope that you're situation is improving. I was interested to read your point about reducing your consumption of coffee. I have also read about foods and drinks that can irritate the bladder. Have you tried to reduce coffee and other known bladder irritants? Does it make a difference? I ask because I imagine that the bladder gets cut/damaged during the surgery and thus more sensitive post op, especially when you're seated which could put pressure on it ? Thoughts ?

Wishing us all the best in these surreal times of Covid-19 .

User
Posted 30 Mar 2020 at 09:55

Hi Jaime,

Unfortunately no real improvements this end...it is very odd! For a few months after the prostatectomy I had no issues at all but now I get a feeling like my bladder hasn't emptied about 10 minutes after I have finished! It is also way way worse after a bowel movement (sorry TMI). It isn't 'painful' as such, more annoying and a constant reminder, which I think may be half the battle.

I have noticed it is worse after exercise that isn't just a brisk walk. For example, I jet-washed the patio at the weekend which takes hours and uses mainly one side of the body and I was worse after that! Beginning to think it may be related to a muscular issue or tendons or 'something' down there that irritates. Read about pudundal nerves and all sorts of things.

In the current situation it seems best just to sit it out than risk a trip to a doctor again, but I wish it would go away! At its worse a hot water bottle helps, but it usually doesn't get to that stage...

How about you?

Rgds,

 

Mark

User
Posted 01 Apr 2020 at 20:48
Mark

Sorry to read that you're not seeing an improvement. Having re-read this thread I notice that francj1 reports that 4.5 years post op he can still get a burning sensation. So we may have be patient. Worth mentioning to your Consultant at your April appointment ? My situation varies - some days better than others. take care

User
Posted 02 Apr 2020 at 09:33

Thanks - yes already mentioned to him but he thinks it could be nerves in the area being irritated from sitting or standing in one position too long. My pelvic MRI last November was fine so it seems that could be the reason, but the devil seems to enjoy sitting on my shoulder!

I hope it all clears for all of us to be honest!

Cheers,

Mark

User
Posted 16 Apr 2020 at 01:14

Greetings All.  This has been a most informative and encouraging thread for me so far.  I am just 6 weeks post-op (Open nerve sparing RRP) and so early days yet.  I haven't even had a follow-up with the surgeon yet, due to Covid-19 lockdown restrictions and so don't even know my present PSA level (it was 9.8 pre-op).  I doubt it would be down to undetectable levels this early.

Anyway, I found this forum while looking for advice about perineal pain.  I had very little pain at all in the perineum area until last week when I woke up one morning with sore hips and groin and perineum.  Thought initially it was the onset of osteo arthritis in hips (I have had it in finger joints in the past) but affecting both sides at once so quickly seemed highly unlikely.  Then I wondered about lymphoceles (I had a few nodes removed) and may still get that checked out.  However, on reading this thread I'm obviously expecting too much too soon as far as overall healing is concerned.  It seems everyone's pain symptoms are quite diverse in nature, so I'll just continue on Nurofen and Paracetamol until I can get to see the surgeon after all this pandemic fiasco is over.

Thanks, all, for sharing your experiences here.  Much appreciated.

Rok

User
Posted 17 Apr 2020 at 09:04

Just an update.  Had a call from Urologist today.  PSA score at zero, so very happy.  Mentioned to him about perineum pain, but advised that unless there is fever present then it's likely to settle down in a few days.  So will continue to monitor the situation.  Otherwise next follow up in 4 months time.

User
Posted 17 Apr 2020 at 09:23

Great news Rokker. My Urologist thinks my issues could be down to scar tissue or even referred pain from issues I have with my lower back. My last PSA was 0.006 so I couldn't be happier about that. It would seem each of us has a slightly different experience and you might have to be prepared to wait a little longer for the pain to go. My pain, these days, is usually about 30 mins long after a pee then goes away until the next time. If I know there is no disease present I can live with that for now!

Cheers,

Mark

User
Posted 17 Apr 2020 at 23:12
Thanks, Mark. Yep, a pleasant surprise really - I didn't think the PSA score would fall off that quickly.

Just reading back over your posts I'd go along with your Urologist's thoughts about your pain issues. And from reading various medical papers on the subject, it seems that the neurovascular, pudendal, urogenital, genitofemoral and various other nerve structures are all subject to possible disturbance during prostate surgery - and nerves can take some time to heal and settle down. So it appears more and more that time is the ultimate remedy. Hopefully not too much of it !!

User
Posted 18 Apr 2020 at 09:09

Hi guys

I have had numerous dilations for scar tissue but do recall having perineum pain as a regular recurring problem. I did have pain in the perineum for a few months post op, as posted earlier in this conversation. I have frequently been catheterised and that does cause pain to the perineum. Following my last dilation I did get extreme pain in the perineum and was prescribed antibiotics which did absolutely nothing. At the follow up urology appointment a couple of weeks later, I brought it up with the doctor who said it was an infection, after some discussion he prescribed a different antibiotic and it soon went.

Are your flow rates good and is your urine a straw colour.

Thanks Chris

Edited by member 18 Apr 2020 at 09:10  | Reason: Not specified

User
Posted 20 Apr 2020 at 09:38

Thanks Chris and Rokker - yes there are a ton of nerves down there and squashed between some tight spaces. On the "things I wish I had known" list is that basic anatomy! Would help explain some of the issues. I read about the pudundal nerves having spent 52 years on the planet with zero knowledge they existed! Seems to create quite a bit of trouble if irritated!!

Onwards and upwards!

User
Posted 08 May 2020 at 07:52

Mark

Great to see you are doing well. Have my 2nd set of PSA bloods next week since my RARP op on 27th Nov 2019. Last bloods <0.01 so fingers crossed. I still get perineum discomfort mainly from sitting in front of the computer. Great to read these posts as puts my mind at rest. When I mentioned it to the Prof in February he said it will last for a while as I’ve had major bowel/urological/abdominal surgery. He said it’s often easy to forget this given external appearance.

hope you are enduring the lockdown and wish you the very best.

TG

User
Posted 11 May 2020 at 13:07

Many thanks - please post your results...will be great if they are still low!

My discomfort not so bad now but appears to go up and down! I think like a lot on here, a consequence of major surgery that looks superficial on the surface! I mean, even the void left by a disappeared prostate can have an effect?

Hot water bottle seems to help more than ice I have found in general 'down there'

Good luck in continuing isolation :-)

M

User
Posted 17 May 2020 at 23:59

A quick update since my last post:  Perineum and groin pain was certainly not improving, so went to GP to get his take on it.  He did a full examination and came up with a few possibilities, including Burstitis, lymphocele, pelvic abcess ... he ruled out arthritis as hip joints are fine.  So he contacted the urologist that did my op for his thoughts.  The urologist suggested doing an ultrasound scan of the whole area, and in the meantime going on a course of nerve-blocking meds (Gabapentin) to make life bearable while we organise the scan and decide where to from there.

So ... watch this space - the saga continues.  I really need to be fit by the middle of July when our calving season starts!  Fingers crossed!

Edited by member 18 May 2020 at 00:00  | Reason: Typo

 
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