Pacey Cuff for male incontinence

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Does anyone have any experience with the Pacey Cuff? I am so tired of sitting in my own urine after prostate removal. I am truly at wits end. The Cuff operates the way you envision around the penis. The cuff theoretically cuts off the urine flow (urethra under the penis) while not impeding the blood flow (top of the penis. If it does both of those, it seems a good solution to the male incontinence problem until we get it under control. Can anyone tell me if they have any experience with it? I've spent 4 months since surgery doing so-many keegles with little to no improvement, and would like to find a temporary solution until maybe I get some improvement.

 

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I had a very large benign prostate for which I underwent one of the only two lasers went for larger prostates. It has been 8 months, and despite Kegels until I'm blue in the face, I continue to have leakage. The surgeon keeps telling me he is certain I will regain full continence, but I don't believe him. Because of COVID, that medical center has been closed to all but emergency surgeries, so I haven't seem him for 7-1/2 months. Finally, I will see him when this hospital gets its act together, and gives me an appointment.

He told me in an email that I should go to physical therapy and learn pelvic floor exercises. How different can you squeeze your anus? I think it's a shot in the dark, and basically an unlikely solution, so I have been very depressed.

What I read on the Pacey Cuff website tells me this is only a CONTROL device. It isn't going to strengthen the pelvic floor muscles, so it isn't going to do more than stop urine from coming out.

 

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Judging by the posts for the last 3 or more years, Kegels don't work for a lot of us - and if they do, it isn't permanent. Consider this: when you are trying to "hold it" until reaching the bathroom, what are you doing? Uh huh. Does it work? Uh huh. Over time (and I mean a year or more)? Uh huh.
Been lucky. Reached a place, about 5 years after prostate surgery, where wasn't doing too bad. Then brain surgery and 5 weeks in hospital. Came out much worse than after prostate surgery. 2 years later, am better than before the last surgery. Why? DamifIknow. Damifdoctorknows. The physical therapist just gave me the "the medical profession hasn't got the answers" look. (She's pretty cool.)
I'll bet that some of us get better and drop out of this forum, leaving the rest of us wondering if there is hope. Which means there is.
The rest is learning to live with it, trying to find better appropriate-for-you products, keep up on the advances.
Good luck and God bless.

 

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There is hope. Kegels definitely helped me. It didn’t happen in four months; it took at least a year to figure out how to move differently, like when getting in and out of a car, or standing up/sitting down. But I’m a female and I didn’t have prostate surgery. I have neurogenic bladder. I don’t know anything about a Pacey Cuff. But I say go ahead and try it.

 

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I think it may be worth it to get in touch with a physical therapist and just find out if they have a program to help with post prostate issues. And be upfront and ask point-blank what their success rate has been. I haven't consulted therapists but I wonder if any of them offer at least a free first consultation, sort of like some lawyers do. If it were me, I'd get recommendations from the doctor or hospital and just call some PT offices for an informational interview type of approach. And @olwi, it may seem like an "unlikely solution" now, but talk to a PT person and just see if the "unlikely" can turn into "likely." And wouldn't it be worth the money spent on making a phone call?
In the meantime, try that Pacey cuff if it's reasonably priced and it sounds like @Anzivion and @olwi have read enough to know what your expectations of this device are. You never know until you try!

 

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PT really helped me understand, become aware of, and strengthen my Kegels. There’s more to it than squeezing your anus. Most people squeeze the wrong muscle(s).

 

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I spent 3 months with no improvement in my incontinence. My surgeon suggested I try an incontinence clamp, and he ordered one from a medical supply company. The first one I received resembled the Pasey cuff, but was a cheaper brand. It was difficult to put on, did not completely stop leakage, and hard to keep clean. I next received the Bard Cunningham Incontinence Clamp. (Medicare paid for the clamps.) It looks like it would be uncomfortable, but after a couple of days, I would forget it was on. I wear briefs, they help keep the clamp in place. I started leaving the house for 3-4 hours at a time. When I felt pressure building in the bladder, I would go into a stall in the men’s restroom, and release the clamp. I asked both my surgeon and regular urologist, if using the clamp would interfere with gaining continence. They both said no. About a month of using the clamp during the day, I realized my incontinence had greatly improved and stopped using the clamp. I still have small leaks when I sneeze or cough, so I wear a pad in my briefs and it remains almost completely dry. Hopefully, I will be able to eliminate the pad in the next couple of weeks.

This forum was a great help to me. Everyone’s suggestions and encouragement, pulled me out of a deep depression, for which I am so grateful. You will get better!!!

 

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@Foxridge Bravo! Always wonderful to hear a success story!

 

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SNOW has it right, at least for me, and I'm not a female. Movements that cause leakage can be suppressed (for me, anyway), and I've gotten to know which i have to use a Kegel for. 65 years of not having the issue makes it hard to remember when a motion - such as swing a leg getting into bed or the car is not drilled into my muscles memory, is automatic, and maybe there is some other distraction, like a conversation. Or when I'm bending and tossing firewood.
It was a Physical Therapist and the doc's nurse who taught me which muscles to use. Maybe, just maybe, that has helped overall.

 

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Hi Foxridge, it sounds like you are on the right track and have been meticulous in your recovery efforts. Way to go! I'm really happy that the forum, helped you immeasurably and has pulled you out of that depression. I always like to see stories of how teamwork such as ours turns lives around for the better, if not just for a complete relief of incontinence but also for mastering the use of products.

 

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I have been using the Pacey Cuff for 8 of my 12 months post prostate removal. I have one on right now while I am adding my comments to this forum post. I basically put it on when I get up in the morning and it stays on all day while I have been painting the house, moving rocks for a landscaping project and driving the tractor to place the rocks. It has been an absolutely perfect solution for me.

My wife tells me my stories are too long, so there is the response right up front to the original question “has anybody out there used the Pacey Cuff?” I have and do. I have several of them and use them continually, during swimming and in the hot tub, when doing my weight lifting and stretches, when bicycling, driving, playing with the grandkids, everything.

Short history - 67 year old man, BPH for 10 years, watchful waiting when my PSA went from under 5 to 10. Biopsy showed tumor, had the RALP, robotic assisted laparoscopic prostatectomy, August 19 last year. Tumor was a 9 on the Gleason Scale so they signed me up for radiation, but first a Lupron shot to kill all testosterone. Then Covid hit and all ground to a stop. I just had my 23rd radiation treatment of the 33 scheduled. The surgery left me completely incontinent. The first radiation oncologist said, “you have to have a full bladder.” I said, “I wish I could!” He said, “Google medical penis clips.” I did and now go through treatment with a painfully full bladder.

I always have at least two of the Pacey Cuffs around, one on and one drying. I use a pad still, but just for protection. I wash them when I shower, doing one every other day. I Kegeled for months, was discouraged beyond belief, and I still am, but at least now I am dry. Like any device used for urine control, be careful when first “clamping down”. If you get skin caught in it, it will hurt like mad, but be careful and it will work for you! The folks at Pacey have been completely supportive of their products and my condition. Highly recommended them and their product.

One final thought. Be sure to order the right size, with no male ego involvement. When I started the hormone therapy/Lupron prior to radiation, I shrunk a size or two and had to get a smaller one. There is a very simple sizing graph on the Pacey Med Tech website, and no shame in getting the right one!!!!

 

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@DonHus I love long responses

 

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Quite the welcome!! Just hope it was helpful.

 

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It was very helpful and I ordered the Ultra Cuff and will receive it on Friday. I also spoke to the manufacturer in Canada as well, and indicated they will stand behind their product.

 

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And, I have to say, they have been incredibly supportive. I hope all goes well for you!

 

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@Anzivino Please give us an update on your cuff. I just started using Lunderg Confidence Clamp.

@History - Read this thread also.


I received my Lunderg Confidence Clamp for incontinence on Sunday 12/13/2020. I chose Lunderg because the bottom pad is encased instead of covered and because there is only 1 pointed piece that fits in one of 4 holes. (You can see it in the link below).

It states to release and readjust every 1-2 hours.

So far I like it. I release, pee, and readjust about every hour. Sunday I wore it for 4 hours, Monday 6 hours, and today (Tuesday) I wore it outside the house to buy groceries.

I am almost at 12 weeks using 1 NorthShore GoSupreme at bedtime, 2 depend pulls, and 3 depend pads.

I have watched the pressure - I use "for Small" bottom clamp and click it in the second hole. I am able to press on the head of my privates and the skin discolors and recolors appropriately. Not to tight to cut off circulation, but has been doing the job.

Amazon.com

 

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I have primarily been using the weisner clamp for several months. Nothing against the Pacey cuff, but I find the weisner easier to use (no power sleeve; fewer adjustments to ready it; and less bulky). I think it gets down to personal preference. I wear the weisner clamp all day, but not at night. I'll be doing the AUS surgery in the Spring, so this is just a stop gap measure at this point. Best to you all.