After nearly two years, my Artificial Urinary Sphincter is doing its job!
Posted , 24 users are following.
As I've posted elsewhere, I had surgery (Greenlight Laser) for BPH in March of 2016, and I was left highly incontinent. The urologist who did the GL, I believe, concealed the cause of the incontinence, complex strictures in the membranous urethra area. (Prior to the GL procedure, I never had a UTI or STD; just slow flow and nocturia. I am convinced the GL procedure, or perhaps an emergency room visit two days after the GL (when I was in acute retention and had another Foley cath inserted by some young nurses) was the cause of the strictures.
My leakage was extreme. I tried Depends, and I could easily soak 8 or 10 in a day. I finally resorted to condom catheters and a bag during the day, and Depends at night, as being on my back allowed me to hold enough so that one or two Depends and trips to the toilet allowed me to get through the night.
After a number of surgeries to try to resolve the strictures for long enough to have an AUS implant, I had a procedure that enabled me to have an AUS implant in mid November of 2017. The AUS was activated the first week of 2018, and I am very happy with the outcome. I do use a light pad, as a strong cough can cause a drop or two. At the end of the day, there is no obvious evidence of leakage, as it's so trivial (compared to the last two years) that I don't notice it. At night, I don't use a pad.
The one thing I have to be careful about is this: To empty the bladder, I have to depress a small pump, located in the scrotum, 2 or 3 times. That removes pressure on the AUS cuff around the urethra, allowing the bladder to empty. After peeing, I have to wait a minute or so until the pressure on the cuff is restored, and leakage is prevented.. If I don't wait, then some dribbles could dampen my PJs at night.
As I am nearly 79, I recognize that I need to be thankful for what I have, and try to forget the things no longer possible. I am definitely thankful for the outcome with my AUS implant, as it has made my life so much better than what the previous two years were.
4 likes, 43 replies
bob03031 glenn77
Posted
Thank you for the idea on who to contact. Glad you had good results. I'm looking forward to finally getting it under control and back to normal life.
Bob
tom22792 glenn77
Posted
Hello my name is Tom and I had the AMS 800 implant installed on December 12 and activated on January 22 so far I have zero leakage which is awesome however I have trouble getting comfortable sitting and i feel like I have to urinate alot will this get better with time, Thank you
scott6749 tom22792
Posted
Tom-
I can't speak for everyone's experience but as my Dr. told me capacity and the urge to urinate is a function of bladder capacity and for me it got better over time. (With pads I was accustomed to going to the bathroom a lot to avoid leaks but with the AUS I had to change this habit.)
Getting comfortable sitting only happened to me initially as the incisions from the surgery healed. This went away pretty quickly, and now it's only odd shaped seats and hard edges that could give me problems; more from a leaking standpoint than discomfort.
Hope this helps and glad the AUS is working.
Scott
glenn77 tom22792
Posted
Hi Tom,
Congratulations! Glad you had a successful implant. Selecting the correct cuff size, and charging the reservoir at the right fluid pressure requires good technique and judgment by the surgeon.
It's totally normal that sitting is uncomfortable at this point. My urologist was conservative, and consequently it was about 6.5 weeks from implant surgery to activation. (After two years of leaking like a sieve, it was if I had a good portion of my life returned to me. )
You have sutures in a very sensitive area, and you will be aware of them for a good number of months until full healing occurs. I used a triple antibiotic cream on the suture line that supposedly reduces scaring for a few weeks.
Be aware that a couple things can cause transient leakage. The first is a really hard cough when the bladder is fairly full. The second is if you sit on something that depresses the area where the cuff is. That will force liquid from the cuff up into the reservoir, opening flow for a few seconds. We have padded bar stools with square corners to the front. I would forget, turn and slide of over the corner, causing a wet spot in my skivies. It was surprising and upsetting, but once I figured out what happened, I learned to how to avoid pressure on the cuff as I got off the stool.
Also, if I feel a cough coming on, I try to do a Kegel contraction and that helps me avoid leaking.
Oh, one more thing. I found that if I got up during the night to go to the bathroom, and first put one leg down from our bed, which is pretty high from the floor, the edge of the mattress would depress the cuff and cause my PJs' to have a big wet spot. I avoid that my rotating my body so both legs go to the floor together. (Not fun having to dig for dry PJs in the middle of the night.)
These issues are so trivial compared to the life I lived for two years, going through 8-10 Depend pullups a day.
Glenn
janice75709 tom22792
Posted
who did this Ams surgery?
tom22792 glenn77
Posted
Ok thanks for the response my pain is I think from the urine holding at the cuff because once I urinate the pain is gone but it dont last long so maybe I am not used to it, I was wearing 5 to 7 pads a day .
glenn77 tom22792
Posted
I assume your cuff is at the bulbous urethra, so the bladder pressure is being exerted on an area that was cut and then sutured not long ago. You might consider emptying the bladder before the pressure builds too much, and maybe do that for a week or so to allow a little more healing.
Glenn
gina85048 glenn77
Posted
Hi guys, Thanks for sharing this information. I am in surgery waiting area now, as my husband is having AUS placed in Chattanooga Tn. he cancelled procedure once dat of surgery but his leakage has gotten worse so he finally relented. We are hopeful this improves his quality of life and our intimacy. He is 59. Post prostatectomy for cancer at age 54. Should he decide to bike again, we are wondering will recumbant bike be way to go?
scott6749 gina85048
Posted
I'm not a biker so I can't speak from direct experience but I've heard a bike seat can cause the activation of the AUS to happen if you sit wrong, so the seat could be an issue but hard to say as most recumbent bikes have larger seats. (It's really just a matter of hard pressure points as hard stools are trouble for me.) I've heard there are special bike seats specifically made to address this pressure point problem but I don't know any of the details.
For cardio I walk/run without any problems.
Hope the surgery goes well and the quality of life improves. (Its worked wonders for me and I marked on my calendar 6 weeks from the surgery date for when I would get the AUS activated as I was hopeful it would change things for the better.)
Scott
glenn77 gina85048
Posted
Gina,
I was an active biker before my surgical mishap too, but haven't gotten back to it. (I was 76 when the botched TURP procedure was done.) I use a recumbent stationary bike for exercise as it avoids pressure on the cuff.I did find a seat on-line that I can't locate at the moment.It has a padded cross seat that gives support to the tail bone, and then about 2 to 3" lower, a horn that's between the legs for lateral stability without pressing on the perineum. I never got around to purchasing one.
Being in diapers for a couple of years was a killer to the idea of intimacy for me/us so good luck there. There are options there should ED be a side effect of the surgery, such as an implant or trimix injections. My AUS implant doctor also does implants for ED, but I haven't been ready for another surgery.
glenn77 scott6749
Posted
Scott,
Any pressure on the cuff with force liquid out of the cuff and into the reservoir. Then when you raise up, instant leak until the cuff refills. I've had this happen a few times when I sit on our bar stool and slide off letting the square front corner momentarily depress the cuff. I don't feel anything until I feel the leak. So I've learned to either sit in a regular chair, or to be conscious about getting down from the bar stool without depressing the cuff. Even then, the amount of leakage is small, a teaspoon or two before the cuff refills stopping flow. It's a minor issue when I recall that I was once changing Depend pullups 8 to 10 times a day.
scott6749 glenn77
Posted
I wear a light shield just in case but as you said it's a small inconvenience to how it was.
ken93021 glenn77
Posted
Glenn,
Glad I found this site.
I am 69 years old and the same exact thing happened to me as you after a 3 hour green light TURP.
After over a year of dealing with total incontinence using pads and condom collection bags, I decided on the AMS 800. So far it has worked well, but i still wear a pad during the day in case of lingering drips.it has made my life a lot easier, however my scrotum is always extremely tender and still bothers me after a year. I'm wondering if you or anyone of the followers have had this problem and what suggestions or thoughts you have on this?
Thanks,
Ken
glenn77 ken93021
Posted
Ken,
I'm sorry to hear of your discomfort. Tenderness of the scrotum hasn't been a problem for me.There have been a few times in sitting that I think the pump pushed against a testicle, giving me a short bit of pain there. Have you tried wearing different under shorts, or maybe loose pants? Honestly, I'm just guessing.When urinating, I mostly stand with pants and underwear down, and steady the pump by holding it with the two little tubes at the top, and operate the pump with the other hand.There's no way I could manage using the fly of the pants to pee.
Glenn
PaulOC glenn77
Posted
Hi
My name is Paul, I am an active 65 year old living in Sydney Australia.
Diagnosed with Prostrate Cancer in January 2020, radical prostatectomy in March 2020.
Currently leaking over 1 litre of urine daily when standing and active. Night time is dry time.
Urologist is recommending an Artificial Urinary Sphincter.
I would love to speak with someone who has one implanted.
My questions revolve around the scrotal implant.
How does it feel?
Does the pump squash your testicle?
Can you cross your legs?
Does it effect any specific activities?
What type of underwear do I need to wear?
glenn77 PaulOC
Posted
Paul,
As I don't have a working sphincter, I don't have the feeling of the external sphincter contracting that I used to have. Mostly, I don't feel anything until the bladder gets full enough to alert me. I can go beyond that point for a while, and the intensity will gradually increase. The cuff of my AUS is around the bulbous urethra, about 4 -5 cm forward of the anus.
I pump is located higher than the testicles, so there is generally no discomfort, so I don't even think about it. I can cross my legs, but sometimes a testicle can get pushed up into the pump causing a sharp transient pain. I uncross and it goes away. It's far from being an every day event.
I gave up bike riding after the implant to avoid an pressure on the cuff. I find that boxer (loose hanging) is better than jockey.
Any sex will result in full retro ejaculation.
Glenn
john50255 PaulOC
Posted
Paul
I am also from Sydney.
I have have the implant turned on just over one week. From wearing 5-6 pads daily i a
have no leakage whatsoever. However my flow is not very strong .After a few days i started to have some discomfort in the scrotum. .I cant describe it as pain ,just uncomfortable. .I have tried a few things to alleviate it , but nothing does much.The device is easy to operate as my scrotum seems to have ereduced in volume. Testicles ??
I hope to speak with my surgeon this week.
I havent been able to find any info on how it feels to others just this short time after it being activated
John.