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Post RRP - Discomfort in Perineum / Prostate site

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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

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 20:34

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 08:55

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 19:48

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

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