Artificial sphincter: Was it difficult to learn how to use? Tips?
How difficult was it to learn to use?
I had another visit to the surgeon yesterday & showed him a spreadsheet from the last week, showing uncontrollable leakage of around 500ml per day. He didn't think that was a big deal (3 months post-op) and said that I'll just have to put up with it.
After 5 or 6 training sessions with PT, I still can't move my pelvic floor at all. He said he's never had a patient who can't exercise his pelvic floor muscles. Well, I can't. I can't be the only one in the world.
He's referred me to a "sphincter specialist" who will "assess" me.
I dread to think what that involves.
But I may be able to get one installed 9 months after surgery, rather than wait for a year of uncontrollable incontinence (can't see me living through a year of this).
But then he said that he doesn't know if I'll be able to manage the artificial sphincter - implying that I'm so stupid & uncoordinated, I won't be able to push a button.
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i went for the testing last summer. All set for the AUS. Getting it done at Mayo Phx. I started reading on this site as well and even asked the same question. I use a condom bag during the day. Nights are fine. Clip works for 2 hour intervals doing light duty. I drink 5L of water a day to prevent kidney stones. IDK. I will watch your responses. Seems like a big mistake. Particularly if something goes wrong.
An AUS is a bigger step than what I did 8 weeks ago by having a urinary sling implanted. I was only needing one light pad per day when doing physical activities, and no pads needed if I was just having a "lazy day" as you describe. I had the same doubts as you but decided to go through with it and I am very glad now, 2 months later. My doctor said I would see relatively little improvement compared to men with much greater leakage, but now I disagree. Being dry and not really needing a pad is a huge improvement as far as I am concerned. I can get out of a shower without leaking on the bathroom floor. I can put on a pair of underwear without leaking on the bedroom floor. I can go without a pad and feel safe most all of the time. I tend to still put a light pad in when I am going to be doing physical things, which in my case could be a morning workout, playing pickleball, golfing, hiking or heavy-duty lawn work. Most of the time, that pad is still dry at night when I go to bed. When I use TriMix for getting an erection (my "nerve sparing surgery" didn't spare the nerves) I don't fear leaking during foreplay or intercourse. I don't know why you chose AUS over a sling, but I believe you are going to be happy when you are finally activated in a few weeks. Good luck.
Of course this is a decision for you and your doctor/s.
I was using 7 - 8 large pads/day. Plus a full diaper to hold the pad and 'just in case'. Now I love my AUS.
The surgery seems major to me. Full anesthetic. Some hours in the OR. If you have a great surgeon there should be no problem.
But if it was me, I'd be curious why I was slowing down.
Are you getting some regular signals and results between the fewer pads? Good discussion for your urologist and oncologist and potential surgeon.
Never hurts to stop and consider before a big step.
Keep us posted on your findings and progress.
May you be blessed with full continence.
Thanks for your replies. So in answer to tomf my leakage is heavier than what you describe in your condition. I am glad the sling worked for you. Grandpun, again thanks for your comments, my leakage has remained constant and stable since my op 3 years ago. It only varies dependant on activity. One interesting/annoying thing I noticed is that I don't seem to get the urge to urinate that I used to get prior the op. This is probably down to my bladder never filling sufficiently. I have two more appointments and will enquire as to the surgeons creds also you have prompted me into asking a few more Q's. Tuckerp I hope the comments help you make future decisions. I am still undecided but if I do not get this done I will be with the pads for the rest of my life. Big decision, I actually hate the pads but have got into a system that kinda works for me.
Good luck for sure ! let me know I do not understand the two tubes at the top. I thought their was one ball to squeeze and pump 2 times that was it. Anyway thanks for sharing I will be haveing the unit intalled on Monday the 4/14 for now
we are all different for sure. FOr 2 years I used 3 drop pads daily 3 to 6 more is I was more active. at night none. So I had a new DR look and he could not because of scar tissue. So he put me under and did a clean out. Now 12 lg pads a day with a clip on. Horrible impossible to live like this. So scheduled a AUS installed next monday the 14th . Wondering if using the clip all day and night is creating a new problem looks like it is another 6 weeks before device will be activated. do not want to carry a bag. guess I just have to pray it works in 6 more weeks. I was not told the leakage would increase so much after he cleaned me out SUPRIZE concerned he is not telling me other stuff. I wish I was at the MAYO clinic they seem much more together than where I am exam at Mayo in Jacksonville 2 years ago they told me to wait a year an see if it got better. it did not.
Part of my fear of having the AUS is the fact that when my prostate was removed I was told that post op only a few in a hundred have leakage problems, just do your squeezy exercises and you will be fine. 3 years later and I'm the one that still leaks. So now I'm a little cautious that I'm going to be the one that this doesn't work for. In saying that I have made a decision that I will have the op. Good luck for those who are having one fitted in the near future, fingers crossed for you.
Thanks for the info. Keep us updated. I started out 5 years ago changing about 12 pads a day. I could not stand it to have any urine in the pad or the smell. So I went to a clip but the clip was difficult for any period of time. If I went to the gym I could leak straining. It became to painful. So I switched to the bag. Its been a trial and error for the last five years. Size of condoms and securely placing the bag being the big ones. I have also developed a rash. That has me the most worried. I keep it under control with bag balm at night. I am just getting worn out of the bag routine. However, I dont want to make things worse. Not sure how many pads I use but I empty about 50-60 ounces a day.
I guess I am going to find out if this works. AUS 800
I'll let you know in 6 weeks and as I go along. Seems like the clamp is causing curculatulion issues have to empty every hour and still get a full pad. Now I'm going to have a inscusion to keep clean as well. Will let you know
How did this work out can you use it