I have been incontinent for over 2 years after a RALP. After going through extensive PFM therapy and biofeedback, I am still incontinent. I am seriously considering an AUS. I would like to hear from anyone out there who has one about their experience. How good (or bad) life with the AUS is? Why?
Any advice or recommendations are appreciated.
Thank you
The Advanced Prostate Cancer group seems to have a lot of discussion on AUS, as we have not had any here so far. Thought if you have not searched their support group here on HealthUnlocked that they might be of help.
Thank you! There is quite a bit of stuff there, but in general it is rather old. Most of it 5/6 years ago. Notwithstanding it is helpful. Best regards
I had the male urethral sling surgery in Sept 2021 one year after my RARP in Sept 2020. I can say the quality of life change has been immense. I went from leaking 17 ounces a day down to a quarter of an ounce. The night time leakage is due to sleep medications. I can handle a quarter of an ounce.
The male sling and AUS are very similar in procedure and recovery time. At 56 (in Sept 2021), I wanted to try the sling.
I read about the sling and the AUS. The AUS is considered the Gold Standard of care. If you are leaking 3 or more ounces in 24 hours, it will greatly increase your quality of life.
I did see that you are on some medications for Advanced Prostate Cancer - follow your care team doctors advice.
Thank you for sharing your experience. I leak about half a liter a day, which is about 17 ounces. With this volume my urologist says a sling will not solve my problem, and that what I need is an AUS. So your result with the sling gives me something to think about. Best regards, and I hope the sling lasts a long time for you.
I would go with the AUS - being way drier makes such a big difference in quality of life. People do not think it is a significant change, but being dry after being incontinent for so long (12 to 24 months) - I would go for it.
The use of a penile clamp ( I use the Bard brand) is not talked about enough. I've been using one for 6 weeks now and have become dry. I had been using up to 10 pads per day and am completely incontinent. Unfortunately Urologists do not talk about them because they do not make more money off of you. that sounds cynical but it's mostly true. I know someone who has used one for 10 years with no problems. No pain, no complications, no cost really and your dry. They leak once in a while but so does the AUS! There can be many problems with the AUS. Do your serious research!!
Thank you for these comments. I have been using a Pacey Cuff for the last few months, but only when I go out. I have seen many recommendations that clamps or cuffs should not be used for more that several hours. I have been following these recommendations and never use my cuff for more than 3 or 4 hours max. I am happy with the help this cuff gives me, but it is not a permanent solution. This is why I asked for experiences participants in this forum. Thank you once more for your help. I hope you continue feeling good about the solution you have found to this awful problem of being incontinent.
Thanks Lupitor,I have been using it during the day but make sure to empty my bladder every 1 1/2 hours along with moving it to a different part of the shaft. I'm careful to wash it every day ( I have 2) and to keep myself dry with starch based baby powder. Plus I never have it tight which means I do leak a little but with wearing a pad it's not really a problem. I have had the guidance of a person here in Maine who has been using his for years now with out a problem. I have seen the studies which have recommended only short term use but with care and diligence I'm hoping it will work out. I am paying close attention to how my body is reacting.
How is your experience with the Pacey? Have you ever had any issues or problems? Have you tried any others to compare to the Pacey? I ask because I'm thinking of getting one. Thanks for any further feedback you might have.
Sorry for the delay in replying. I put your message aside to reply later and then completely forgot about it.
Regarding the Pacey, I am quite happy with it. I can't compare it to other cuffs or clamps as it it the only one I have used. It is not the perfect solution, but it is good. I like that you can tighten it to the degree you want.
I really have not had any problems with it. The only times I did was a couple of times when, after loosening it to pee, I then, for who knows what reason, I forgot to re-tighten it. An hour or so later I was wondering why I was feeling my pad somewhat wet when I shouldn't.
Mind you, I have only been using it since the beginning of the year, so my experience is somewhat limited. As I said, I only use it when I go out, but now that-going-out is much more relaxed than before, when I had to worry about changing my pad or feeling it might be becoming saturated. Now my worry is finding and going to a bathroom every hour or two to pee, which is no big deal.
I have been able to use it for up to 4 hours with no problem. A couple of times I have gone over that limit and still been OK, but I prefer not to do so if I can.
I think the only problem with the Pacey is that it is more expensive than other clamps or cuffs. They say you can get Medicare to pay for it. I submitted my claim to Medicare for reimbursement, but as of yet I have not received anything.
Best regards
Thank you lupiter for your information. I have been using the Pacey for a couple of weeks now. I've found once its adjusted correctly it works fine too. The company says you can use it all day or for most of the day at least. I have read some studies that say up to 2 hours is proven safe but studies on 'day long use' are not out there. I would like to use it for most of the day if I can. I have used the Bard cunningham clamp for most of the day by moving it to a different part of the shaft after every urination. Up to now I've had no issues but I'm nervous about long term issue of damage to the urethra. The reason I got the Pacey was it's feature of putting less pressure on the blood vessels while keeping the urethra closed. I'm thinking that if the Pacey could be also adjusted along the shaft it would be the best solution.
Anyway...I'm rambling a bit but I'm just trying to do the best thing for myself with not harming myself. Thanks again for responding.
Are you dry just while using the clamp or dry without it? My husband is working with a pelvic floor specialist. He had surgery in September 2021 and is still suffering from severe incontinence. He recently started using the Weisner clamp. His therapist wants him to wear it all day (emptying every few hours) to build up his bladder. Hoping that it makes a difference.
I am dry only while using the clamp or when I am sleeping. All other times I drip constantly. I use a Pacey and a Bard Cunningham clamp. Did you say he is wearing it all day? Some people say to only wear it 1-3 hours a day. How is it going with wearing it all day?? I have worn it all day on some days and have not had a problem. Thanks in advance for your reply! ( I found that the Weisner did not work as well for me)
He’s wearing it 6 days a week all day for 4-6 weeks. He’s on week 4. She’s hoping to build up his bladder capacity. He just ordered the Pacey. It’s all so very frustrating. My husband is not overweight and is in good shape. His urologist said his surgery went very well. He was able to spare nerves and his Prostate was normal size. Wish the doctors were more help.
I agree, the Doctors are terrible when it comes to helping patients navigate the world of incontinence! It's quite sad. The largest urology practice here in Maine has no one on staff who offers specific help with newly incontinent patients!Also look into the Bard Cunningham clamp, it works well, is well built plus easy to use. It's only about 40 dollars retail too.
Hello Kark & Elph! I have been using the Pacey for about 4 months now. I only use it when I go out. I seldom use it at home. I normally keep it on for a maximum of 3 hours, but sometimes I have kept it on up to 4 hours.
I have to empty my bladder about every 1 1/2 or 2 hours. If I let more time pass the pressure starts to build up causing me to leak -even through the cuff- a tiny bit.
After 3 hours it sometimes starts to be uncomfortable.
Having said all that, I am happy with the Pacey because, in spite of its imperfections, it keeps me from worrying about possibly soaking my pad and having to run and find a place to change it when I’m out and about. At home I prefer to use a pad because I know that there I can change it easily whenever I need to do so.
I have not tried other brands of clamps or cuffs.
I am currently in the process of getting ready to have an AUS implanted. I am sick of dealing with pads, diapers and a cuff. I’ve been on them for 2 1/2 years now.
Best of luck to both of you in this journey.
Looking for someone to identify with and share experiences and maybe even a little hope.
