Artificial Urinary Sphincter ~ Post-op

Artificial Urinary Sphincter ~ Post-op

Hi folks.

I'm 13 months past my Prostatectomy.

in spite of doing all the required Kegel Exercises I'm still pretty much 100 % incontinent ... getting through between 2 to 4 pads per day. ED is making slow positive progress .... The Vacuum Pump works well but isn't exactly "spur of the moment" The Cialis pills just give me splitting headaches :-(

My (UK) Consultant seems likely to recommend fitting an AUS (Artificial Urinary Sphincter).

Question :- Do any of you have an AUS fitted and can share with us your experiences ..... good or bad.

Regards Roland in UK

13 Replies

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  • I'm Jim from Louisiana...

    After talking to my doctor and a friend of mine (RN) both recommended the AUS. I opted for the AMS800. Supposed to be the best.

    Little history, Had radical prostatectomy done in 02. Started with one pad little dripping. Gradually as time passed it worsened.

    I had the valve job done on 07/13/16. My gosh I was in pain for a week and half. Scrotum did swell to the size of grapefruit make that a cantaloupe. For a couple of days after surgery, then decreasing. And getting better every day. I had a super-pubic cath in so peeing was no problem. That was plugged up after 3 weeks and I was peeing on my own, still leaking like a faucet. Now the story gets better.

    Cath removed and AUS Activated on 08/06/16. WOW! I wore a pad home just in case, didn't need to dry. Slept with one, didn't need to dry. Took some getting used to but I don't know why I waited so long to get this done. I Love it. No worries so far........

    Went swimming with grandkids again! Playing golf again! Sleeping naked again (missed that the most) Walking in the mall and park with no problems. My circle of friends, Daughter, Son and grandkids keep me busy enough. Threw away that backpack full of backup pads. Living somewhat of a normal life again.

    I love the AUS800 and recommend it highly (ask for it by name).

    If you have anymore questions, just ask...

  • Hi Jim,

    Thanks for that info .... it's really MOST encouraging. So much so that, with your permission, I intend to print out a synopsis of your reply and take it to show my consultant when next I see him in mid Feb. He keeps procrastinating even tho' I said my leakage is not improving. In fact they even sent me on a course to improve Kegel Excerise muscle strength. The muscle strength doubled but still with no recordable leakage improvement. The constantly damp Scrotum itches like hell by most day's end in spite of regular washing.

    Like you the thing I miss most is just throwing off all my clothes at the end of the day and jumping naked into bed. Rising and retiring is now a 15 to 30 minute ordeal ... and still I get wet legs and feet GGGGGrrrrrrr !

    Will definitely keep in touch. Roland

  • I had my prostatectomy in 2007 and endured pads for mild incontinence until November 2016 when I opted to have the AUS inserted. I had had 2 male slings inserted in 2015 and a redo earlier in 2016 - both failed - did not stop the leaking. At 6 weeks post-op for my AUS, it was activated early this week - oh, my gosh - why did I not have this done years ago. I am 100% dry and loving it! I had maybe a week of post-op scrotal swelling and some discomfort, mostly due to urine burn from the pads I still had to wear until the surgery healed to the point the AUS could be activated. I am a believer! My surgeon was Dr. Allen Morey, world renowned pelvic reconstruction specialist with UT-Southwestern in Dallas TX.

  • Hi there, thanks also for your 100% endorsement of having an AUS. I can almost "feel" your relief and pleasure at the change post-AUS-op. When last I talked to my Consultant, he wanted to next do some internal video tests. I'm not keen ... to me it's just more delay and misery before "solving" my problem with an AUS. Side-effects not withstanding.

    Anyhow good luck with your future Continence :-)

    Roland

  • After my prostate surgery back in 2006 the residual system I still have is the need to go to the bathroom somewhat frequently, especially at night. When I was able to get a 30-trial, in addition to the usual ED mitigation, the inconvenience of frequent urination goes away. I was using the 5 mg daily dose version. If you were using the 5 mg dose or higher, you should try the 2.5 mg instead to see if the headache side effects go away.

  • Hi there ?,

    It seems to me that different Consultants have many different methods of medication regime. Post my Prostatectomy operation I have been prescribed 20 mg twice weekly doses of Cialis [Tadalafil]. Presumably to "kick start" the spared nerve bundles back into something like normal pre-op levels. However, as I've said the medication gives me splitting headaches so I only take the Cialis occasionally at present. The one good portion of each day, incontinence-wise, is night-time when I rarely ever have to get up for a bathroom visit :-)

    I think I'll raise the question of a daily low doseage Cialis regime when next I see mt consultant.

    Roland

    PS I've also sent this reply .... hopefully .... as a private msg to you. Please let me know if it worked.

  • I was diagnosed as having stage 1 prostate cancer in November 2011 at the age of 42 years. My Oncologist opted for an aggressive treatment to counter the cancer. I was given Brachytheraphy and External Radiation. The side effects however in addition to numerous blockages in the urethra with lots of bleeding were very painful. After numerous operations including TURP the blockages were eventually cleared however I then began suffering from severe incontinence that is I was totally incontinent. In addition my bladder had shrunk and I had to have Botox injected into the bladder. The final operation was done in September 2014 and this entailed me having an artificial urinary sphincter (AMS800) inserted to help stop the incontinence. Prior to this I also tried using a penile clamp which I do not recommend as it is painful and uncomfortable.

    The insertion of the AMS800 has been a life changer for me. I have reduced the number of urinary pads that I used to use from 8 - 10 a day to 3 - 4 a day and now it is down to 2 a day. The pads never get soaked as I use the TENA Level 2 pad. I still have to get up numerous times at night to use the toilet.

    The AMS800 is for me currently the best I know of on the market and it was certainly worthwhile getting it inserted.It does take a while to get used of it and it can be a bit uncomfortable however it is way better that wetting yourself.

    Only other problem I have is severe retrograde ejaculation when having sex and the fact that on ejaculation there is a burning sensation as urine comes out instead of sperm.

    Some questions:

    1) Is there a possible solution for retrograde ejaculation?

    2) Can a person's urinary shincter get repaired?

    3) What can be done to stop bladder from shrinking? (I currently have to have annual botox injections into my bladder and have to take tofranil and vesicare for this).

    4) How can low testosterone levels be treated safely?

    Thanks guys

    Francis

  • Francis, As I noted earlier in a response, I have an AUS and one of the first questions I asked my Urologist BEFORE I agreed to have it installed, was "what happens if the AUS quits working or needs to be repaired?" His answer was "we can fix anything that goes wrong or needs to be fixed." I have no regrets whatsoever in getting one installed. Apparently one area of concern is as time goes on and we get older and have the appliance on for a longer time, the outer lining of the urethra where the cuff is attached can get thinner from compression or the urethra shrinks with age, the cuff may have to be moved or a smaller cuff installed. But that is not a common issue according to my Dr.

  • Francis, I also meant to comment on your question about low testosterone. Although this has been somewhat controversial in the near past, there have been several new studies that recently came out that showed having monthly testosterone injections to raise the level have been shown to cause no increase in either PCa activity or heart problems. I have been on testosterone injections for 2 years to stop hot flashes (24 years out from PCa surgery and 21 years out from having my testicles removed) which caused the hot flashes but stopped the cancer. Something to discuss with your Dr.

  • I have had the AUS for about 2 years and I would HIGHLY recommend it to every one who has moderate or severe incontinence. A little personal history..., following radical surgery 24 years ago at age 52 I had very little if any incontinence but it became to be more as I grew older. Following 2 heart attacks (first one 4 years ago, 2nd-2years ago) My incontinence got to the point of literally running out of me. My Urologist recommended the AUS and after minor surgery to install it, it has been a Godsend. Very little leakage if any and no more pads or worry about leaking. Simple to operate and hardly know it is even there.

  • Also, after reading the other comments, I agree totally with the comments about the slings. Work much better for women, but not as good for men. My former Urologist who does the slings even recommended the AUS.

  • I am so sorry you have had so many problems. I hope you can find some help.

  • Thanks Gents for sharing your experiences and advice.

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