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Pelvic floor exercises (Kegels) do work!

User
Posted 05 Sep 2024 at 21:15

Like many post prostatectomy I was struck by how little urine control I had post catheter removal. Yes, I knew that it was likely, but it's still a shock. Fast forward 14 weeks and I've just had my first shield only day (running excluded). Everybody is different and I realise that there are people who say that Kegels are not that important, but who is likely to ignore the advice we are given and just hope things will fix themselves on its own? So as much as it is a nuisance doing the exercises, I'm pleased I persevered. 


So here's a few of my, personal, experiences and a few questions:


# Lying and sitting were dry from the start. Standing and walking were a problem. I find it hard to say, accurately, how many pads I was using - approx three a day - due to my observations that follow. But the idea was that I was regularly dribbling, at times, spontaneously.

# I was walking, then running, from early on and it was difficult to work out how to manage this. Pads were impossible (still are), so disposable pants worked OK.

# It is easy to overdo the exercises (Kegels). I started with 6 sessions a day, 10 reps of slow and fast. Unfortunately it was clear to me that doing the Kegels made the problem worse after a session. Short time pain for long time gain, I would say to myself - and so it turned out.

# Having said I did 6, this was by no means a fixed six, as I responded to how my muscles were feeling, easing off on some days. This I think is key. Yes there are programmes that prescribe a fixed regime, but this, for me, was hopeless. I needed to adjust to life and muscle aches.

# Slowly the leaks eased, but for the first six weeks I saw little improvement. I had a step change around 10 weeks. Now at 14 weeks things are a lot better - not perfect, but close.

# Walking gentle is now mostly leak free, but speed walking and running is not. For these I still use disposable pants (for comfort, more on this later) - not in the rain, like today :-) It was quite liberating running with no protection in the pouring rain today - possible as I live in the countryside. At the beginning I would be soaked in the first km or so. Now I can get around a 10k with one bush stop and a mostly dry pair of disposable pants.


My conclusions are to experiment. Have numerous styles of pads, absorbent pants, underwear versions, change timings of sessions etc. etc Keep the Kegels going, but listen to the feedback you get from your pelvic floor and any discomfort from the overall area. It is very likely it will get much better, albeit slowly. Sudden step changes have been reported. I had one. Don't lose heart.


Now to the problems that others may be able to help me with.


# I cannot get comfortable for a lot of a day wearing pads of any shape and absorbency, and with any style of underwear. After the op I noticed that my penis shape had changed a little and had shrunk too. Again, this is common. The issue, for me, is that from wearing boxers since adulthood, I cannot now adjust myself in tight underwear even without pads, because my "new", stubby penis shape finds itself sticking out and getting squashed or ending up bent. Pads make it worse as there is more material to press my manhood. I do wear boxers on their own around the house at times and what a relief it is, but leak protection isn't possible in boxers. Even wearing boxers and jeans is a problem now as I end up getting compressed. Disposable pants are a lot more comfortable, but they don't breathe and the ones I've found are all far too padded for me now. Does anyone know of slightly absorbent, disposable pants? Anyone else experienced this compression and discomfort? Any suggestions?

The future: I am doing 3 or 4 Kegel sessions a day, hoping to get to 100% dry. I don't expect to achieve this, so I do need to work out how to sort out the pad discomfort.

Any advice and suggestions are very welcome.

Edited by member 05 Sep 2024 at 22:21  | Reason: Not specified

User
Posted 06 Sep 2024 at 11:50

Hi Barry

I started pelvic floor exercises literally on the day of my diagnosis. I got the "Squeeze Men" app (£2.99) on my iPhone and this really helps remembering and controlling the exercises. I currently do 4 sessions per day.

I have never worn boxer shorts always tighter briefs fortunately. I bought some "Molicare" Men pads which have a slit in the front to accommodate all your junk!! I find them quite comfortable.

I had the same observation regarding penis size and even brought the subject up with the surgeon. I had a non-nerve RARP so no erections since then and never likely to be. It seems there is a reduced blood flow so the penis never really increases in size.

Viagra won't work as there are no nerve connection to initiate the erection process so he booked me in at the ED clinic to learn all about penile rehabilitation (it's really a thing) and the use of a vacuum pump. Should be fun!!

Any other questions you think of please just ask. Happy to share my experience.

Regards

LEN

Edited by member 06 Sep 2024 at 11:51  | Reason: Not specified

User
Posted 08 Sep 2024 at 18:17
Hi Barry,

I had my catheter removed on August 21st and am currently using protective pants. I haven't tried using pads yet. I've tried two brands of protective pants. The TENA product is thicker, has strong absorbency, and feels drier, but because it is thicker, it puts more pressure on the prostate area when sitting, which can cause noticeable bloating and pain, especially for someone who has just had surgery. It's also more expensive. The other brand"Depend", is thinner but still has good absorbency. I suggest you buy it and give it a try.

User
Posted 23 Sep 2024 at 17:43

Update: week 16. Two consecutive days with no protection (running not included). 

Continuing with Kegels 3 to 4 times a day, because now the stress incontinence is behind me (hopefully), urge incontinence isn't. I'm assuming with bladder training and pelvic floor muscles strengthened further, the urge issues will abate. Most of my adult life I've had some degree of urge incontinence so I doubt I'll get beyond that pre-op point, but it will be nice to improve further than where I am now.

Exercise: running leak control is steadily improving too, but lagging day to day improvement. Still experimenting with different arrangements of protection... Not started cycling yet - still a bit wary still of damage. Probably, will wait for a couple of more weeks or so before trying the bike. It's the lumps and bumps on the country lanes I'm concerned about. 

I had my head around 3 to 6 months to regain upwards of 95% control. I'd say I'm above that for stress, but below for urge. Seems I'm about normal - not sure my wife would agree with that though ;-)

In 4 weeks I'll have my first 3 month PSA. My surgeon encouraged me to think that I am now cured - I had just gone into T3 (Gleason 7: 3:4 50% each) with negative margins. Mostly I'm managing this. I appreciate I am at risk of a relapse, but life has now picked up from when I first had a high (6.7) PSA at the end of January. I've ditched some stuff I used to do in preference to having a new outlook and some new activities. If PC is indeed behind me I'm very glad I pushed for an RP and diligently worked on my pelvic floor exercises. 

Good luck to all of you going through this. Hopefully, this thread will be of some help/interest to others...

 

User
Posted 23 Sep 2024 at 18:20

Hi Adrian, happy to answer, though I'm not a good person to ask about this.

I had all nerves removed on one side and probably as a result there's been little stirring down there. To be honest I/we've not been much motivated to pop pills and pump. I instructed my surgeon to be as radical as he needed to give me the best chance of removing the cancer, with continence a close second. ED issues were very much a distant consideration. 

User
Posted 31 Oct 2024 at 12:23

Further 5 months update on Kegel/Pelvic floor exercises:

I've continued with the exercise 3 times a day. Doing them now more strongly and some for longer.

Five months since surgery and around the house I need no protection. Stress incontinence pretty well 100%. However, urge incontinence is trailing. I suspect over the last few months my bladder has rarely filled to anything like capacity, so I've got lazy. It's not too bad. Overnight I'm back to pre-op capacity of 500-700mml, but when I'm moving around I am vulnerable to urgency (only) leaks once bladder > 250ml or so. At 400 ml it's precarious. 

Another measurement of progress is when on fast & long walks, and when I'm running. Here there's negligible stress incontinence and as I run in the countryside, the urge issues are irrelevant. So nearly fixed here too.

At 3 months and 4 1/2 months I seemed to make step changes in stress incontinence. Odd, as improvements were quite marked.

I intend to keep going with the Kegels at 3 times a day until all is back to pre-op levels if possible, then drop to twice a day for life.

Just had first 3 month PSA test. Got the all important "<" symbol.

So if your Kegels are taking a while to show improvements don't lose heart just keep going

Good luck all.

 

User
Posted 31 Oct 2024 at 13:11

Originally Posted by: Online Community Member
Just had first 3 month PSA test. Got the all important "<" symbol.

Fantastic news Barry. Keep those < arrows flying, mate! 👍

User
Posted 01 Nov 2024 at 18:43

I don't know if I've ever been seen by an oncologist? I think the surgeon was a urologist/oncologist. My GP is monitoring my PSA. I got my results today and they are < 0.02 still undetectable. 👍

User
Posted 01 Nov 2024 at 18:51

That's good news Adrian. Your profile pic shows a man who enjoys a pint. Me thinks you might be partaking tonight. Cheers.

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User
Posted 06 Sep 2024 at 11:50

Hi Barry

I started pelvic floor exercises literally on the day of my diagnosis. I got the "Squeeze Men" app (£2.99) on my iPhone and this really helps remembering and controlling the exercises. I currently do 4 sessions per day.

I have never worn boxer shorts always tighter briefs fortunately. I bought some "Molicare" Men pads which have a slit in the front to accommodate all your junk!! I find them quite comfortable.

I had the same observation regarding penis size and even brought the subject up with the surgeon. I had a non-nerve RARP so no erections since then and never likely to be. It seems there is a reduced blood flow so the penis never really increases in size.

Viagra won't work as there are no nerve connection to initiate the erection process so he booked me in at the ED clinic to learn all about penile rehabilitation (it's really a thing) and the use of a vacuum pump. Should be fun!!

Any other questions you think of please just ask. Happy to share my experience.

Regards

LEN

Edited by member 06 Sep 2024 at 11:51  | Reason: Not specified

User
Posted 06 Sep 2024 at 20:29

Hi Leo, thanks for taking the time to reply.

I had a look at the Molicare pads. They seem to be similar to the Vivactive shape rather than the more winged shape. 

Today I'm trying slips style underwear. Another snugger fit that may be better for me than briefs or trunks. I'm forever trying different configurations, mostly because the goal posts keep changing as things improve. I'll have enough unused gear to start a market stall at this rate.

Hope your improvement remains on schedule and you get back to golf as soon as is safe...

 

User
Posted 08 Sep 2024 at 18:17
Hi Barry,

I had my catheter removed on August 21st and am currently using protective pants. I haven't tried using pads yet. I've tried two brands of protective pants. The TENA product is thicker, has strong absorbency, and feels drier, but because it is thicker, it puts more pressure on the prostate area when sitting, which can cause noticeable bloating and pain, especially for someone who has just had surgery. It's also more expensive. The other brand"Depend", is thinner but still has good absorbency. I suggest you buy it and give it a try.

User
Posted 10 Sep 2024 at 09:02

Thanks Hoolik for taking the time to reply. I'll have look at the Depends version. 

Hope you make a swift recovery.

User
Posted 23 Sep 2024 at 17:43

Update: week 16. Two consecutive days with no protection (running not included). 

Continuing with Kegels 3 to 4 times a day, because now the stress incontinence is behind me (hopefully), urge incontinence isn't. I'm assuming with bladder training and pelvic floor muscles strengthened further, the urge issues will abate. Most of my adult life I've had some degree of urge incontinence so I doubt I'll get beyond that pre-op point, but it will be nice to improve further than where I am now.

Exercise: running leak control is steadily improving too, but lagging day to day improvement. Still experimenting with different arrangements of protection... Not started cycling yet - still a bit wary still of damage. Probably, will wait for a couple of more weeks or so before trying the bike. It's the lumps and bumps on the country lanes I'm concerned about. 

I had my head around 3 to 6 months to regain upwards of 95% control. I'd say I'm above that for stress, but below for urge. Seems I'm about normal - not sure my wife would agree with that though ;-)

In 4 weeks I'll have my first 3 month PSA. My surgeon encouraged me to think that I am now cured - I had just gone into T3 (Gleason 7: 3:4 50% each) with negative margins. Mostly I'm managing this. I appreciate I am at risk of a relapse, but life has now picked up from when I first had a high (6.7) PSA at the end of January. I've ditched some stuff I used to do in preference to having a new outlook and some new activities. If PC is indeed behind me I'm very glad I pushed for an RP and diligently worked on my pelvic floor exercises. 

Good luck to all of you going through this. Hopefully, this thread will be of some help/interest to others...

 

User
Posted 23 Sep 2024 at 18:01

Great update Barry. Thanks for sharing and good luck with your next PSA result.

If you don't mind me asking, have you any ED issues?

Edited by member 23 Sep 2024 at 18:04  | Reason: Additional text

User
Posted 23 Sep 2024 at 18:20

Hi Adrian, happy to answer, though I'm not a good person to ask about this.

I had all nerves removed on one side and probably as a result there's been little stirring down there. To be honest I/we've not been much motivated to pop pills and pump. I instructed my surgeon to be as radical as he needed to give me the best chance of removing the cancer, with continence a close second. ED issues were very much a distant consideration. 

User
Posted 23 Sep 2024 at 21:08

Originally Posted by: Online Community Member
 I instructed my surgeon to be as radical as he needed to give me the best chance of removing the cancer, with continence a close second. ED issues were very much a distant consideration.

A very wise list of priorities mate. Initially, impotence was a huge issue for me, but I've gradually accepted ED and Invicorp helps.

 

Edited by member 23 Sep 2024 at 21:18  | Reason: Typo

User
Posted 31 Oct 2024 at 12:23

Further 5 months update on Kegel/Pelvic floor exercises:

I've continued with the exercise 3 times a day. Doing them now more strongly and some for longer.

Five months since surgery and around the house I need no protection. Stress incontinence pretty well 100%. However, urge incontinence is trailing. I suspect over the last few months my bladder has rarely filled to anything like capacity, so I've got lazy. It's not too bad. Overnight I'm back to pre-op capacity of 500-700mml, but when I'm moving around I am vulnerable to urgency (only) leaks once bladder > 250ml or so. At 400 ml it's precarious. 

Another measurement of progress is when on fast & long walks, and when I'm running. Here there's negligible stress incontinence and as I run in the countryside, the urge issues are irrelevant. So nearly fixed here too.

At 3 months and 4 1/2 months I seemed to make step changes in stress incontinence. Odd, as improvements were quite marked.

I intend to keep going with the Kegels at 3 times a day until all is back to pre-op levels if possible, then drop to twice a day for life.

Just had first 3 month PSA test. Got the all important "<" symbol.

So if your Kegels are taking a while to show improvements don't lose heart just keep going

Good luck all.

 

User
Posted 31 Oct 2024 at 13:11

Originally Posted by: Online Community Member
Just had first 3 month PSA test. Got the all important "<" symbol.

Fantastic news Barry. Keep those < arrows flying, mate! 👍

User
Posted 31 Oct 2024 at 16:03

Thanks Adrian. I see from your profile that you're still on 3 monthly PSAs and critically all undetectable.  I think my plan switches me to 6 monthly at  1 year, though if the GP surgery doesn't notice I'll probably squeeze in one or two extra 3 monthlies.

My GP said that he recently picked up a patient who had his prostate removed 10 years ago and had never had any follow-up PSAs. Apparently his previous practice never told him he should. So much ignorance. Fortunately he was fine.

User
Posted 01 Nov 2024 at 05:49

Originally Posted by: Online Community Member
Thanks Adrian. I see from your profile that you're still on 3 monthly PSAs and critically all undetectable.  I think my plan switches me to 6 monthly at  1 year, though if the GP surgery doesn't notice I'll probably squeeze in one or two extra 3 monthlies.

I hate PSA test time. It's like having the sword of Damocles hanging over your head. I was hoping that after a year they would only test every 6 months, but because I was Gleason 9 and had extraprostatic extension, which increase the risk of recurrence, I still get checked every three months.

In fact, I should get my 21 months test results today. If they remain undetectable perhaps after two years they'll put me on 6 monthly testing?

Edited by member 01 Nov 2024 at 05:50  | Reason: Typo

User
Posted 01 Nov 2024 at 18:06

Adrian, hope you had another undetected result today. Yes the waiting as test looms is a challenge - I've had two so far. I was fine up to the day before the test, but doubts started to creep in while waiting for the results. Previously they came back the following day, but as it's half term the results arrived back from the lab on time, but were not  signed off/released by the GP until 3 days later. I did manage to get them a day earlier over the phone by persuading the surgery that I knew what the numbers meant. Next PSA will NOT be done during school holidays ...

Like you I had small extraprostatic extension (1mm deep by 5mm - Gleason 7, 50%:50%. Negative margins). My urologist said 3 months for a year, then 6 months. I will see him in a few days time. Are you still being monitored by a urologist or have you been switched to oncology?

User
Posted 01 Nov 2024 at 18:43

I don't know if I've ever been seen by an oncologist? I think the surgeon was a urologist/oncologist. My GP is monitoring my PSA. I got my results today and they are < 0.02 still undetectable. 👍

User
Posted 01 Nov 2024 at 18:51

That's good news Adrian. Your profile pic shows a man who enjoys a pint. Me thinks you might be partaking tonight. Cheers.

 
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