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Artificial Sphincter (AUS). Diary of experiences.

User
Posted 20 Dec 2018 at 21:34
Just a quick update. The AUS is absolutely fine and continuing to work consistently. Unfortunately I have had to discontinue the TRT because my haematocrit reading was too high. I don't want to have to spend another night in A&E (my GP thought I was having a heart attack) so I guess I'll have to put up with the low testosterone.

Psychologically, I have been much better than while I was leaking, and I even managed to drive through Birmingham last week, passing the hospital with barely a shudder.

Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.

User
Posted 31 Dec 2018 at 16:25

Hi All

Just wanted to say a big thank you for all the comments and information. I had my AUS fitted on the 17th December 2018. 2 weeks ago. It quite tender at the moment but I'm able to feel the device. I have very heavy leakage since my operation to remove my prostate just over two years ago. My life has although been very active. Playing golf twice a week, Bike ride once a week for about 12 miles. It's very hilly around Leeds. Not sure if I should mention this but I also take my 4-year-old grandson swimming once a week. ( I know I will leak but with all the chemicals I'm thinking it's ok?) But as others have mentioned it's all been about when I can change pads or find a toilet or private place! Hopefully, it will be much better in a month or so. I will get back to you on my progress!

User
Posted 30 Jan 2019 at 16:51

Hi All

Just a quick note. I have been activated just about a week ago. All went well and I would say I'm 95% dry. This is soooooooooo much better than the place I was before the operation.

 

I'll get back at a later date and give a bit more information. It's not perfect but to me, I'm in a much better place at the moment.

User
Posted 30 Jan 2019 at 19:41
Nice to hear 2 good news follow ups for that piece of kit.

atb to you both

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 30 Jan 2019 at 19:53

Thanjs for update. Useful to know.

A surgeon has offered me this but i want to wait and see if things imorove over time and doing PVE.

 

Ido4

User
Posted 16 Mar 2019 at 15:19

Thank you Tony and co for a great diary of events regarding AUS's. 

Following a visit to the consultant I've been offered an AUS to hopefully solve my leakage problems after the removal of my prostate in January 2018. As my PSA has started to move up after 12 months I've been put on HT and I'm waiting to find out if I need to have radiotherapy or if HT will keep things under control. Based on all the reports on this forum and a favourable result from the consultant I hope to join the AUS club later this year.   

Edited by member 16 Mar 2019 at 18:03  | Reason: Not specified

User
Posted 16 Mar 2019 at 17:25
Still working.....
Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.

User
Posted 15 May 2019 at 13:11

Had AMS sphincter fitted in February, very bruised, no pain but lots of discomfort. Switched on in March complete success! great relief; back to kayaking at a good pace four hours once a week, portaging 25kg kayak with no leakages; me, not the boat! Very hesitant about trying my first love of cycling. I spoke to my consultant who confirmed that there would be discomfort but cycling would not damage the AMS. After some trial and error I would recommend that anybody coming back to the bike should: Fit a prostate friendly saddle, drop the nose of the saddle a couple of mm this will take the weight off the tender area, it will however put more strain on shoulders, arms and neck so I recommend raising the handlebars a couple of  mm. I have also fitted a gel saddle cover (£12) I wear padded cycling shorts and a small pad, just in case. My first ride was 10 miles+ on roads I know well, on the hilly sections where I would normally get out of the saddle I now drop a gear, stay in the saddle if comfortable. The only time I got out of the saddle to have a stretch I sat down without thinking and activated the device! luckily there was not a lot to lose but a lesson learnt. I'm back on the bike and although there will be compromises the benefits far outweigh the negatives. I've shaved off my beard, mudguards off this afternoon I'm nearly a racer again! See you up the road.... Old Roly.

User
Posted 19 Apr 2020 at 09:59
I've noticed a bit of an outbreak of posts about incontinence recently. I hope the content of this thread might be of use.

Nearly five years on, the AUS continues to work well with minimal leakage.

Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.

User
Posted 10 Aug 2021 at 10:24

Hi Tonypw, I was interested in your post as I have had an AUS fitted some 8 weeks ago. I went to London Bridge hospital and have had the most painful time since with a hydro seal and then an infection followed by severe nerve pain in my scrotum which while eased a little has prevented me having my AUS activated. I am due to go back to London Bridge hospital to see both my surgeon and a pain  consultant on the 16th, not sure I could bear the pain of someone touching my scrotum at present. Can you tell me if the procedure was painful when having it activated. Keeping my fingers crossed the pain will have subsided enough to allow activation, I can’t wait to be half normal again as I am only 68 and have had my life on hold for 12 months now!!! Look forward to your comments,

User
Posted 12 Aug 2021 at 13:42
Apologies, I saw your original post and replied to that, not realising that you had arrived here already. Luckily I avoided any infections - I was stuffed full of antibiotics before and after the implant operation - but yes I was bruised and battered for a while (not helped by having been driven home along the concrete section of the M54). There was only a slight twinge on activation because the AMS800 pump is very slippery and the surgeon had a little bit of difficulty finding the release trigger.

My AUS is still working well even after all this time, obviously not as well as my original natural sphincter, but it has helped a lot in getting life back to somewhere near normal.

Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.

User
Posted 23 Oct 2022 at 17:32

Really useful diary of your experience Tony thank-you.

My surgeon has now mentioned an AUS to me to think about. Some further questions I would have (and forgive me if they are already mentioned above) are:

- if they fail at any time can they be removed and replaced?

- do they affect erections and orgasms?

- atm I leak a little when I orgasm, does this stop with the AUS?

- can you use a vacuum pump and constriction ring with them?

Zum

 

User
Posted 11 Dec 2023 at 15:01

What is the effect of AUS on erectile function - just curious. I had surgery 12 years ago and still leak when sexually excited.

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 11 Dec 2023 at 16:27

Hi

I’m being worked up for an AUS and my Urology Consultant says it should stop leakage when I orgasm. It it only when you get sexually excited that you leak? If so, it maybe considered ‘overkill’ to have an AUS.

Would be good to hear from someone who has actual experience.

ZL

 

User
Posted 11 Dec 2023 at 17:55

Hi Zumerset_la

I have no intention of having AUS. I had my surgery 12 years ago and we have happily managed to live with the inconvenience  of  leakage when sexually excited or at orgasm, there is no problem during the latter because I use a vacuum pump (due to ED) for creating an erection and a constricting ring which stops any leakage from the bladder. There are other benefits as well.

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 27 Dec 2023 at 19:03
That's really helpful Tony. A few years on I wonder how things are now? I'm age 65, a cyclist, had a radical prostatectomy over three years ago which left me a bit incontinent. Its likely that I will be fitted wiht an AUS in either January or February which would be wonderful. I've waited a long time!

I'm interested in if you found out any more about a suitable bicycle seat?

User
Posted 12 Mar 2024 at 00:44

This is a very useful thread. Thanks to all who have contributed. I have suffered with incontinence since RALP in August 2019. AUS fitted Feb 2024. Have been concerned about the pain and numbness in the scotum but it seems nothing untoward from what I’ve read. Looking forward to activation in April 2024. 

“You gotta go there to come back”

User
Posted 18 Mar 2024 at 14:33

Hi Zum Lad,

Unable to reply to your private message as being an infrequent poster I’m prevented from doing so but am happy to answer your query here. 
Prior to being assessed for AUS had a flexible cystoscopy which identified a stricture which needed dilatation. Following video uro-dynamic test about 6 months later and further subsequent cystoscopies stricture had not returned.
My AUS implant was carried by North Bristol NHS Trust at Southmead which is I believe the only centre for such procedures covering South Wales and South West England. I had been waiting over a year treatment. 
Hope everything goes to plan for you 

“You gotta go there to come back”

User
Posted 06 Jul 2025 at 17:56

 Great postings, Tony. We all thank you.

On the day of activation, who activates it?

Originally Posted by: Online Community Member

Surgeon "Have a feel around so you can locate the pump ready for the activation of the AUS."
Me "It all hurts too much and I can't tell what's me and what's pump....."

The most (in my opinion) sensitive bit of the body has been invaded; it’s hardly surprising that it would object. Hold tight, it does all get better reasonably quickly. Oops, when I say "hold tight" I don't mean physically! Relief is on its way!

Please keep adding to the diary here so future readers have more sets of experiences to look at.

 
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