Prostactomy Incontinence
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Archives1
Staff member
Join the club. I'm 9 months from rp and still incontinent, though I'm down to 1 pad a day. Am considering sling surgery to stop the flow, but will wait a few more months for natural healing. Also, good idea to do kegels and go to PT for pelvic floor therapy. Every person is different. You may regain continence soon or it might take longer. Can't really tell you how long it will be.
Archives1
Staff member
Ah, friend, three weeks seems like a long time, but it really isn't in terms of recovery. You've just begun the process, and normally improvement continues for some time.
Share your concerns fully with your urologist. Get a referral to a good physical therapist. There will be a process and an arc of recovery. Hang in there, don't despair. We all have an arc of recovery.
Share your concerns fully with your urologist. Get a referral to a good physical therapist. There will be a process and an arc of recovery. Hang in there, don't despair. We all have an arc of recovery.
Archives1
Staff member
I had mine remover this last April. I started with a couple pull ups a day. I got at Walmart. October I went to a couple pads a day.down to one pad a day. When you think you don't need pads anymore. Don't stop kegels right away. I stop at Thanksgiving. I had to start doing them again. I'm at 1 pad a day. Hopefully not much longer. Surgeon told me to keep doing 50 kegels a day after getting control. Just part of life now. Good luck and God's speed
Archives1
Staff member
@Scripts2311
Read as much as you can here. Search google for help dealing with incontinence following RP. Look for other forums. Find a good PT person for pelvic floor. Have patience, exercise, talk to someone if you get too down. A year from now you will feel very different. Consider condom catheters if you find depends and pads to be too expensive and frustrating. You would be surprised by how many men deal with this every day.
www.franktalk.org
www.meetup.com
Read as much as you can here. Search google for help dealing with incontinence following RP. Look for other forums. Find a good PT person for pelvic floor. Have patience, exercise, talk to someone if you get too down. A year from now you will feel very different. Consider condom catheters if you find depends and pads to be too expensive and frustrating. You would be surprised by how many men deal with this every day.
FrankTalk
The FrankTalk.Org website strives to advance patient education about Erectile Dysfunction
Prostate Cancer Men's Support Group | Meetup
For people with prostate cancer. Understanding the disease and its treatment, living with the treatment and with the disease. This is a support group for a condition that is common. People (men and trans women) with prostate cancer do not have much chance to talk about it. We meet on Zoom. Come and
Archives1
Staff member
I am four years out and finally mostly dry but only because I had the Advanced Boston Sling surgery in January 2023. I was immediately mostly dry after the surgery. Do your physical therapy for six months and discuss progress and options with several qualified urologists. Hang in there!
Archives1
Staff member
Yes it is an emotional challenge. I was almost totally incontinent for 3 months. I had to wear a pull up at night and often even then it leaked because I was lying on my side. I often had a shower at 3 or 4 am . I too had a pelvic floor physio and did pelvic floor exercises. I cut out all caffeine, fizzy drinks and alcohol. All these things may help a bit but fundamentally the issue is that the Sphincter muscle below your bladder is damaged during surgery and it takes time to heal. For many apparently that can be 3 months, for some 6 months and for some a year or longer. I am a year and nine months out since RP. I have improved a lot and am dry at night but still by no means continent, especially at the moment since I have a head cold and am coughing a lot. I think it is important to realise that 80 percent clear up pretty well and for one in five it's an on going issue. All of us feel the emotional pressure from time to time but you do learn to manage. I found the heavy pad usage challenging with the constant wetness and needing to wash frequently so I used the Coloplast External catheter and still do from time to time. We can give further information on that if you would like. You will probably be aware the ED will be an emotional challenge too as time progresses but as with the incontinence you find ways to manage. Once you are healed start penis rehabilitation using a vacuum pump. In Northern Ireland I was issued with 6 months supply of Cialis under the NHS but I am not sure it had much of an impact. I still use the Vacuum pump for sexual intercourse and I find it works well for me and my wife. No one on this forum will dispute the impact of prostate cancer treatment on you mental health and well being but with support you will find ways. You may also experience treatment regret. But you need to remember that hormone therapy and radiotherapy have side effects too that are not very pleasant either. For some people treatment is just a "bump in the road" but for others it's a longer term matter to deal with. I hope you find the comments on this forum helpful as I certainly did when I was at my lowest. I know you will find lots of "brothers in arms" on this forum.
Archives1
Staff member
I agree with Hbownlow. I am 11 months out from RALP and still not fully continent. If I just live the life of an old man, sitting around most of the day, I can make it to the bathroom and not have much leakage to speak of. But I am only 70, and love being active whether it be projects around the house, hiking, playing pickleball or golfing. At those times, I have little control over my bladder; I rarely even know I am leaking. One pad gets filled during two hours of pickleball, and I use condom catheters for 18 holes of golf. I've been doing kegels since before the surgery and have been in pelvic floor physical therapy since October. My PT has implied there is little left that she can do for me, because my pelvic floor is in great shape. So I am baffled. But I will continue to exercise and hope it eventually pays off. Guys that went the male sling, or AUS route are intriguing and someday I may join them. But not yet, I'm going to still give nature and exercise more time to solve this problem. I will say though, that I have no faith in the data saying I am in the minority because most men who have had a prostatectomy regain their continence within the first 6 weeks to 6 months. Everyone I've met that had this done has leaked for months if not years, and still wear pads in their underwear "just in case".
Archives1
Staff member
Indeed the first few months can be challenging and I went through a period of emotional challenge as the incontinence, though forewarned, appeared to disrupt my life too much. However after 3-4 motnhs of suffering I have extremely limited incontinence problems (occasional spurts on sneezing or other stress) and od not need pads or any other protection anymore. Perhaps I was lucky, but feel completely normal after about a year since surgery. Incontinence is no longer an issue for me. (There are other issues that have cropped up - all mild in comparison, though)
So just be patient and do the Kiegels and other exercises to strengthen your pelvic muscles.
So just be patient and do the Kiegels and other exercises to strengthen your pelvic muscles.
Archives1
Staff member
Hi
I agree with every one above. We are all different and respond to treatment different ways. I had a radical prosectomy fours years ago.
My surgeon told me no radiation nor hormone treatments would be required. Before I left recovery he told my wife that I would need
35 radiation treatments and 18 months of hormone treatments.
My cancer has metastasized to my right ilium and tailbone.
I have had 100% incontinence ever since surgery. I went to pelvic floor training with no results. My PSA is rising and current treatment isn’t working and may be going on chemo.
I found out that urologists aren’t really trained in after care.
I have been using Men’s Liberty external Cathaters for 3.5 years. I rarely have a mishap and have never had a UTI. I use them with underwear by URO concepts.com. My insurance pays 100%. These items allow me to stay active. I fish, teach bible study work in yard etc.
I am 75 years old and count my blessing everyday that I an alive.
Quality of life is not what I hoped for but better than I deserve.
You can email me if you need any additional information.
Good luck and God Bless
Bustersday
I agree with every one above. We are all different and respond to treatment different ways. I had a radical prosectomy fours years ago.
My surgeon told me no radiation nor hormone treatments would be required. Before I left recovery he told my wife that I would need
35 radiation treatments and 18 months of hormone treatments.
My cancer has metastasized to my right ilium and tailbone.
I have had 100% incontinence ever since surgery. I went to pelvic floor training with no results. My PSA is rising and current treatment isn’t working and may be going on chemo.
I found out that urologists aren’t really trained in after care.
I have been using Men’s Liberty external Cathaters for 3.5 years. I rarely have a mishap and have never had a UTI. I use them with underwear by URO concepts.com. My insurance pays 100%. These items allow me to stay active. I fish, teach bible study work in yard etc.
I am 75 years old and count my blessing everyday that I an alive.
Quality of life is not what I hoped for but better than I deserve.
You can email me if you need any additional information.
Good luck and God Bless
Bustersday
Archives1
Staff member
I'm truly amazed at the support on this site. My prostatectomy was almost 5 weeks ago. I knew I would be incontinent, but for me that meant a few drips here and there. I now have a new understanding of incontinence. I wake up everyday thinking why did I do the surgery, but in reality at 65 it was the best choice for me (even with the side affects). Dealing with incontinence post surgery really does mess with your mind, and as my wife can attest, it really is messing with mine. Before surgery, if I was feeling depressed I could go out and work in my shop (welding, rebuilding my tractor, etc.). That is now on hold for awhile until my doctor gives me the all clear. But even then. i still have that constant diaper or pad weight reminder that I'm leaking. Also, I'm in the USA and I don't see many, if any, physiotherepists in my area. Are they more commonly used in other countries?
Thx for letting me rant.
Thx for letting me rant.
Archives1
Staff member
I had the prostatectomy around the same time (5 weeks ago). My issue is the same, The incontinence is getting me down. I am also 65 and am glad I got the procedure done. I am in Florida and have had no problems in finding a PT. I am attending two sessions per week to help with the incontinence. I am also doing some yoga to help. You might want to see if there is a yoga instructor in your area who might be able to help.
Archives1
Staff member
A physio will help with ensuring you are doing the pelvic floor exercises correctly. The physio I had was able to put a probe in my rectum and measure the strength of my holds in the long Kegels and the quick ones. There are plenty of downloadable help sheets on the net too. But bear in mind while these pelvic floor exercises can help with recovery they are not a guarantee. As I said on a previous post the emotional impact is perfectly understandable and nothing to be ashamed of. Treatment regret is also quite common and you wonder what might have happened if you had chosen a different route. There are no guarantees with the alternative routes either and unpleasant side effects to deal with. With regards to the incontinence issues I too hated the heavy pads and pull ups, the constant changing and washing. Three months post RP I was referred to the NHS incontinence service who pointed me in the direction of the external catheter. While my leakage has improved a lot and I can use lighter pads at home especially if the work I am doing isn't too strenuous I still use the external catheter on some occasions when I'm away from home for a long period. You might find that option helpful on occasions to give you respite from that sensation of constantly " marinading in pee" Also I would suggest going for some talking therapy if you feel you need it. It will help emotionally and will give some respite for your wife and family. This forum is also good as you say. Everyone here can empathise and you will find "friends" from all over the world
Archives1
Staff member
I am 5 months out from my RP, did PT before surgery and after. First 3 months were a struggle with several pads daily and anxiety with my business travel, had to check a larger suitcase to accommodate the amount of pads I would allocate per day. Today I am 1 pad per day, some days, I feel I can nearly get away with just a light pad but it still varies depending on the day and other factors like alcohol consumption and coffee can sometimes cause some leakage. One recommendation is to do core strengthening along with the Kegel exercises, my PT post surgery focused on that and it seemed to accelerate my progress.
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