Can anyone share their experience with ProACT (an AUS)?

I contacted Mayo Arizona a couple of months back. They said they cannot do tele visit with New York

I had the PROACT balons placed more than three months ago and have had three adjustments last one last Friday August 22, 2025 and as of Sunday about 9:00 AM I placed a new pad which I had been using in my under shorts and wore it until 8:00 AM Monday morning and could of continued but I replaced it. Before surgery I would have gone thru 4 to 6 pads in that length of time. I have had the prostrate removed and no radiation. Some 20 plus years of severe incontenance since prostrate was removed.

Your experience with ProACT Is similar to others. If you had had radiation, you would not be having these results as it makes sure your urethra are very hard and the ProACT doesn’t work well.

Congratulations.

Saw my 5th doctor on the AUS vs. ProAct. This one at Johns Hopkins in Maryland. He agreed with 3 of the other doctors ( the 5th doctor, who's surgery started the incontinence was pushing for ProAct) that ProAct was not for me. The Johns Hopkins doctor is the only one who brought up radiation. Like the other 3 he thought, that although ProAct had been around for a few years, it does not work as well as AUS and, was a bit of a gimmick plus, if it's not exactly placed, it will leak. I had hoped one of them would have said to try ProAct first. I have now accepted my only route now would be AUS but, this last doctor said that may not even work due to the radiation hardening my urethra and, my future may be to abandon the urethra altogether for a bladder drain tube. Great news for a 66 year old to look forward to.
On Monday, August 25, 2025 at 08:26:56 PM EDT, Mayo Clinic Connect < nf+228912b9+70099908@n1.hubapplication.com> wrote:

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| Comment posted by @jeffmarc on discussion "Can anyone share their experience with ProACT (an AUS)?".

Your experience with ProACT Is similar to others. If you had had radiation, you would not be having these results as it makes sure your urethra are very hard and the ProACT doesn’t work well.

Congratulations.
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Please don't even CONSIDER ProAct if you have had radiation! They were a disaster for me (see my previous post). Have you contacted Dr. Daniel Elliott at Mayo-Rochester?

Thirty years ago I had a radical prostatectomy because of cancer. I lived with urinary leakage for next thirty years using Tena pads. I did not opt for collagen injections, the sling or AUS because of concerns that it might affect my sexual function. I was hoping for a less invasive therapy in the future.

At age 69 my sexual function was diminishing and my leakage was worsening up to five pads a day. In 2023 my patience paid off when I discovered the ProACT adjustable ballon incontinence therapy. Only one doctor at the University of Michigan Hospital in Ann Arbor, MI, was doing the procedure and I was his 26th patient. A few of his patients had RADIATION on their prostrate and he quickly learned the ProACT balloons were not affective for their treatment. If I had RADIATION he would not have done the surgery. I also opted to participant in the ProACT study for five years. In September 2023 I had my surgery and it took my doctor twenty minutes to place the two ProACT balloons. I had two small incisions in my perineum between my anus and scrotum. They were basically placed where my prostate had been removed. Each balloon was connected by a tube to a small port, one placed in each scrotum sack where they could be refilled. The tubs and ports were titanium and the balloons were made out of silicone. My doctor put 1 ml of saline solution to fill the balloons with the option of up to 8 ml adjustments post surgery. He had to put some saline in the balloons to keep them from pulling out. I strictly followed his after surgery guidance for six weeks. The only exercise I could do was walk and I did a lot of walking. Absolutely no lifting. I also drank a lot of water every day after my surgery. The first few days after my surgery it was very difficult to urinate, but part of that was due to the swelling. Plus my thirty years of leaking was a shock to my bladder. When I went back for my six week post surgery follow-up, I could fully empty my bladder. I told my doctor that I only leaked a few drops of urine during the day and I wore a light protective liner just in case. Sometimes, I would get a few drops of leakage when I would cough or bend over. My doctor did not need to put anymore saline in my balloons and I was extremely satisfied. I had 1 ml and I could go up to 8 ml by accessing the small filling ports in my scrotum. I went back for my six month and my one year follow up and had no leakage. I quit wearing a light liner after one year. My sexual function is intact, which made me very happy but age has diminished that some. Occasionally, I might get a sensation of having an urge to pee after going to the bathroom, but that goes away when I hold my urine longer. I am 16 months post surgery and I am extremely satisfied with the results. I have no pain from my ProACT balloons or filling ports and I don’t even notice they are there. I had no urinary track infections since the surgery. When I drink alcoholic beverages, I do not leak.

When I talked to my ProACT study coordinator I asked about the other participants in the study, she said they are not experiencing any problems to her knowledge and they are satisfied with their surgery. The only exceptions are the ones that had RADIATION treatment for their prostate cancer. ProACT has not been successful for patients that had RADIATION for prostrate cancer.

I did a lot of research on the four different types of surgery (AUS, Sling, Collage Injections and ProACT) for male incontinence. I chose ProACT because it is the least invasive, it can be removed easily (unlike the AUS and Sling that require a lot more surgery when they fail), it is adjustable, you don’t have to manipulate anything like the AUS, and it has been used in Europe for over 20 years. Reading the studies on all the devices ProACT works just as well and even better. The skill of the surgeon is very important for proper placement of the ProACT balloons.

ProACT has been covered by Medicare since 2017. BCBS of Michigan, my secondary insurer, would not cover it, stating it was experimental even though my Medicare paid. After two appeals with BCBS denying me, I appealed to Michigan Department of Insurance and Financial Services. They ordered BCBS to pay. The appeal is a public record on the internet. Type BCBSM 224917 to view the appeal. I hope this helps someone to make a decision on what surgery is best for them.

Thank you, that’s very encouraging. I had RP in 2008 and first did a sling and then an AUS in 2010. After 15 years my AUS is about ready for replacement. I find your case very interesting and would love to learn more. I would like the name and location of the urologist that did your ProAct. Was that at U of MI?
Can you pm me.
Thanks