AUS experiences: My husband is 7... - Advanced Prostate...

Advanced Prostate Cancer

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AUS experiences

Lyubov profile image
22 Replies

My husband is 78. Incontinence when stands/walks, following treatment for radiation cystitis caused blockages. This is second time in less than 2 years. It is wearing him down terribly.

I'm exploring possibility of AUS for him and would be grateful for any thoughts.

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Lyubov profile image
Lyubov
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22 Replies
Shooter1 profile image
Shooter1

AUS has been great for several who have had one installed. I haven't yet but may consider if my inconvenience gets worse. So far mainly when getting on and off my bike in the summer.

Lyubov profile image
Lyubov in reply to Shooter1

My goodness gracious, I just read your history -- you have been to hell and back many times over already. You're a hero in my book! Thank you for your reply about AUS. I haven't even broached with hubs -- he's 78 & may well be having a biochemical recurrence; onc is watching with PSA test every 3 months. You mentioned bike riding -- that's surely helping you stay strong. Sadly, my man hasn't been exercising. Can't walk without losing all control of bladder. O.K. sitting & lying down. . . so I'm trying to gather info & then talk with him and urologist. . . Thanks again & hope you have a lovely holiday season!

Shooter1 profile image
Shooter1 in reply to Lyubov

I sometimes put a pad in my shorts before a ride. My grandson keeps me going when he's here.

Lyubov profile image
Lyubov in reply to Shooter1

Thank you for the information. You have an awesome grandson!!!

London441 profile image
London441 in reply to Lyubov

I have a AUS and couldn’t be happier with it. I’m an athlete and the incontinence was worst when I was working out, but it was bad regardless.

The AUS does have to be replaced every 7-10 years on average, which leads some to recommend against it, but if you’ve been heavily incontinent long enough trust me that does not matter at all.

This is because the AUS is the only effective ‘last line’ of defense for heavy incontinence. I strongly encourage talking to a good urologist about it. Most especially because he is not moving.

If he doesn’t get moving again soon this and all other considerations won’t matter.

Miket218 profile image
Miket218

I suffered from terrible incontinence for three years after my RP. I would soak as many as 10 pads per day and I mean soak! I made the mistake of going for a urinary sling first. It cost me an inch of penis length and hardly impacted my incontinence at all so I went for an AUS. WOW! That made all the difference in the world! I still think a little bit if I exert myself or if I cough. And I still drip little bit after I urinate no matter how long I wait before I leave the urinal. I can take 10 steps and still go back and squeeze out a small, brief stream. Still, my life is greatly improved. I’m 72 years old. Was diagnosed with Glisan nine in 2016. Best wishes to your husband!

Lyubov profile image
Lyubov in reply to Miket218

Very grateful for your sharing your experience. Concerned about my hubby's age & not very strong physically but will look into the AUS.

Bdale profile image
Bdale

I am considering AUS as well, can you tell me how long it took you to recover to full activity?

London441 profile image
London441 in reply to Bdale

Another satisfied customer. Full activity was within days except for strenuous exercise lifting etc. Several weeks for that. Also considerable swelling in the scrotum but it settled pretty quickly.

When you’ve had relentless, heavy incontinence long enough, the AUS feels like a miracle-which it is.

ehoneycutt29 profile image
ehoneycutt29

HelloI had my AUS surgery one year ago to the day. I guess for better lack of a word. I love it. I am dry all the time now, unless I have a full bladder and strain real hard lifting. I would do it again with what I know now. Before I got it I like an open faucet and was having to use depends and shields. Just find a Doctor that has installed several of them. I had my surgery at Vanderbilt Medical Center by Dr. Johnsen. He is awesome!

Hope this helps.

Merry Christmas

Lyubov profile image
Lyubov in reply to ehoneycutt29

Wow, your uber-positivity encourages us to explore. Just worry about hubs's age & somewhat frailish condition. . .

Echotango51 profile image
Echotango51

Hi LyubovAfter my RP in Dec 2013 my incontinence never improved. I was using 5 to 7 pads a day, after 4 1/2 years I had enough. Had AUS installed in 8/2018. This was the best thing I did and made me happy for once since by DX. I ware a small pad when I go out just in case I have a drop or two come out. My uro told me the AMS 800 should last 10 years, I told him, good most likely it will out last me. You can read my history if you like, it will show you the trip I have been taking. My God bless you and your husband .

Lyubov profile image
Lyubov in reply to Echotango51

Thanks for this very promising reply. Happy it worked. Will explore for hubs.

Lychee1576 profile image
Lychee1576

I had same problem with Incontinence after 1 year of therapy, no help. I had AUS installed, it change my life 8 years ago. I put one new pad on after shower in the evening and change it before I shower the next evening. When installed properly it will still leak slightly . You will easily learn to go up to a urinal operate the bulb.Find a Dr. with the best reputation with AUS, in your area, numbers count . GET YOUR LIFE BACK.Contact me if you would like.

Lyubov profile image
Lyubov in reply to Lychee1576

Thank you! Glad it helped you & will investigate for hubs.

Don_1213 profile image
Don_1213

Has your husband seen a specialist physical therapist? One who specializes in pelvic floor rehabilitation? These sort of PT places do exist - your urologist should know of one in your area. They most often cater to female patients (about 50% of women over 70 have some issues with incontinence, especially if they've birthed children).

I heard about these sort of PT places, not from my sort of worthless local urologists, but instead from a big-city urologist who I saw for another issue. So I asked a friend whose son is marrying a newly hatched PT if she knew of a place in the area. She did. It took about a month to get the first appointment - but it was worth the wait. Part of what they do is an internal study - finger up the butt - feeling how well you can do kegals, feeling how strong your sphincter muscles are, and how strong your pelvic floor muscles are. And if there are any locked up muscles.

What the therapist found was - I was doing kegals wrong. I had muscles on both sides of the pelvic floor that were locked up and spasming, I was breathing wrong when doing the kegals and doing things like getting up from a chair or lifting things. I was also overdoing the number of wrongly done kegals - further weakening the pelvic muscles. 2 sets of 10 DAILY were her recommendation. NONE of this was ever discussed by any of the urologists I've seen.

That was session #1 - she gave me a page of daily exercises to do, and a link to the YouTube video she put together. So far - 3 days into it - I'm spurting/peeing way less. I've been able for some time to get through the night without getting up to pee - but usually by the time I get up I was really urgently distressed and had to pee RIGHT NOW. This morning - not the case - the have to pee right now urge was gone.

The therapist told me within 2 weeks I'd notice a difference. In this case - 2 days there is a noticeable difference. She said with great confidence "We will dry you right up.." and at this point I have no reason to doubt that.

Before jumping into surgery - which I understand being hesitant about - you might seek out the same sort of specialized PT in your area. Despite the majority of clients being women, the therapist was well equipped to address male issues.

Here is a link to the video I mentioned: youtu.be/vutc2_VCyik (she indicated she was fine with sharing the link.)

Good luck!

Lyubov profile image
Lyubov in reply to Don_1213

Thank you. My hubs had the PT last year for his first bout. After several months, he did improve. But he had another occurrence of the radiation cystitis. So de ja vu all over again. That's what he's dealing with now. Been doing the Kegels since beginning of October. Not making much progress, though. I just don't know if he'll be a candidate for the AUS. How I wish he could. He is so very miserable now.

My own radical prostatectomy was in March 2017; after more than a year of physical therapy my bladder was still overactive and I was going through 3–4 pads per day. In August 2018 I had an AUS implanted and it made a big difference, but it wasn't quite as tight as I would have liked (if it's too tight it can damage the urethra). From that point on I could wear normal underwear with a pad that was good for 24 hours.An AUS is guaranteed for 10 years, but there's a 3% failure rate each year. In September 2021 mine stopped working and I had to have it replaced. The new one is significantly more effective, but somehow the control is in an awkward place in my scrotum. (The surgeon has a lot of latitude with respect to where he/she places the parts of an AUS.) I can make it work well enough, so I won't have my urologist open me up again to reposition it.

You need to know ahead of time that, in my experience, implanting an AUS is more painful than my robotic prostatectomy. The AUS is anchored to my pelvic bones in 2 or 3 places and it has tubes running among its various parts; I can feel some of the components through my skin. It's been almost 9 weeks since the new one was implanted and I still have pain, swelling and bruising in my scrotum. But it's worth it! I can wear normal underwear now with a minimal pad that's good for 24 hours—and I may be able to give up the pad, at least on low-stress days.

By the way, I've been advised to avoid any exercise that involves anything hard pressing against my crotch, like a bike seat or a rowing machine, because that could damage my new AUS.

Yank66 profile image
Yank66

Hubby had severe problems after prostate surgery in 2013 and gave PT a try to no avail. After radiation the urologist said he was not hopeful for any improvement. He had the AUS in March of 2014. It was life changing surgery. He started to regain lost confidence almost immediately. He has always been an active guy and does have some stress incontinence, but it is manageable. Sometimes an adjustment must be made as time goes on, but his is over 7 years old and still effective. Many medical professionals are not familiar with the AUS. He’s an open book and has educated a number of people about the device. His buddies have said, “ you have to do what to pee”? :)

Poowater profile image
Poowater

I would suggest you contact a urologist and MO. There is a great need for professional advice.

Lyubov profile image
Lyubov

Yes, I'm waiting for hubby to give me go-ahead with uro. He does have an MO who is watching PSA -- low, but rising -- doubling just bit more than 6 months. Will check that mid-January, hoping it's gone down. I am very troubled thinking that too many things are wrong with him at the same time. He can't exercise because of the leakage. I also have serious health issue that will be checked early this week. Hope it's o.k. as I am hubby's only caregiver.

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