Incontinence after Prostatectomy: How an Artificial Urinary Sphincter changed one man’s life.
This story was kindly donated by a Touchy Subject member who wishes to remain anonymous. His intention is to provide hope to men and partnerships who are struggling with incontinence and sexual function post Prostatectomy.
I was diagnosed with Prostate Cancer in September 2018. Gleeson score 7, well contained, with no migration. Due to the adverse findings on MRI and biopsy I was advised to have a Robotic Assisted Radical Prostatectomy (RARP).
I underwent surgery in October 2018 . At 6 weeks post surgery my PSA was “undetectable”. This was probably the most relieved I’ve felt in my life. I felt a great deal of gratitude towards my urologist, despite minimal improvement in urinary incontinence, and zero function in the erection department at this point.
I wasn’t panicking about this however, I was warned that progress in these areas was often slow.
Life with Incontinence.
Life with incontinence was extremely difficult, especially in the absence of any significant improvement.
I’m a fit 68 year old Physiotherapist, still working and involved in my profession so I fully understood the importance of pelvic floor exercises. I consulted with an experienced Pelvic Health Physiotherapist who was very helpful and supportive. She was very impressed with my pelvic floor contractions when assessed by ultrasound. I could contract strongly and hold with some effort for 60 seconds. My control of leakage when upright however was extremely poor.
At 6 months post RARP I was still in number 3 pads (the biggest apart from pull up continence pants).
If I didn’t change my pad after 2.5 hours leakage into my pants would occur. This happened in public and at work on 3-4 occasions – very embarrassing. Not to mention the wet patch I often left on the couch at home, or having to get out of bed at 3 a.m. and change the sheets with my amazing wife who never complained. If I slept heavily and neglected to get up and empty my bladder in the middle of the night it often meant trouble.
And guess what – I started to struggle with depression.
I remember sitting on the beach in Sorrento by myself in the afternoon of New Year’s Eve 2018, speedos and swim shorts on, without a pad, and constantly dripping into the sand (who cares). I briefly contemplated going for a very big swim into the bay and not returning, which actually scared me. Over the next few months my mood was down and rarely up, which is just not me.
At 10 months post RARP my continence improvement was minimal. I was finding it very difficult to get too involved in sexual activity/rehabilitation with this going on (more on that later).
Time to get positive now.
Taking the next step: Artificial Urinary Sphincter
I connected with a couple of mates who had the same issues, and I decided to confront my urologist about the potential next step – surgery for my incontinence.
My urologist agreed that although I was only 10 months post RARP (most urologists want you to wait at least 12 months before considering surgery) my chances of becoming continent were very slim. He referred me to a Urologist who specialises in the insertion of a prosthesis called an Artificial Urinary Sphincter (AUS).
I underwent surgery to insert the AUS in October 2019 after the hardest 12 months I have ever endured.
The device needed to be in situ for 6 weeks before activated in order to “settle in”. At 6 weeks I returned to the urologist. His nurse manipulated the pad located in my scrotum. This caused the inflatable cuff around my urethra (just below the neck of the bladder) to inflate with liquid and compress my urethra (painless) thereby blocking the leakage of urine. She told me to go for a walk, have a coffee and a couple of glasses of water, and return in an hour or so. We then took a trip to the loo where she showed me how to pump the little pad in my scrotum 2-3 times and “Eureka!” - I urinated and emptied my bladder without hassle.
I went home not wearing a pad and I’ve been pad free ever since!
It’s important to wait 30-60 seconds after voiding to allow the cuff to refill from the small reservoir located behind the pubic symphysis (pelvic bone in front of your lower abdominal region). This closes the cuff again and prevents further leakage. I wear a very thin shield in my undies to catch these occasional drips, however this is a very minor inconvenience. The shield never needs replacing during the day and could last for days if you were short of them. I now wear nothing but boxers in bed.
In short, the AUS has given me my life back.
Sexual Recovery 12 months post surgery
I’ve always enjoyed an active sex life with my gorgeous wife of 45 years.
She was very keen for me to proceed with the Prostatectomy and have me around for a few more years, with the acceptance that penetrative sex may no longer be possible. If it meant “putting the cue in the rack” then so be it – not a huge issue for her. We could still enjoy cuddles.
… Not if I could help it!
I was advised by my Urology Nurse to start taking ¼ Viagra tablet 2 weeks prior to surgery and continue with this until further notice. This was to encourage blood supply into the penis. She also advised taking a full Viagra tab once a week post surgery and perhaps trying some sexual activity in the shower if leakage was an issue. This I did and my wife usually joined me to lend a hand – if you know what I mean!
A Touchy Subject side note: the use of Viagra and other PDE5 medications within penile rehabilitation is still contentious, please speak to your urologist about the best protocol for you and learn more by listening to this expert podcast.
In the early days I would achieve 30-40% pre-RARP erection status, insufficient for penetrative sex. Not quite ‘marshmallow into a keyhole’ but couldn’t get the job done despite our combined efforts. We had a great deal of fun and laughter trying this though, and it often finished with a happy ending!
I also used a pump (vacuum erection device) for penile rehabilitation, maybe 3-4 times a week whilst having a shower. It certainly pumped blood into the penis and gave it a good stretch, but I did not have a means of maintaining the erection after using it.
A Touchy Subject side note: If you are having difficulties using your pump, or you want to maintain the erection after pumping, please watch this educational video.
The experts say it can take 2 years or longer to achieve an erection sufficient for penetrative sex post Prostatectomy. Luckily, we had success after 12 months. I am now 20 months post RARP and my Viagra-assisted erection is now sometimes 95+% of pre RARP status and gradually on the rise (sorry for another pun).
My spontaneous nocturnal erections have also returned and this is steadily improving.
Summary and Advice
Despite a very sad start my story, it does have a happy ending. My PSA is still undetectable. I feel very lucky to be where I am now.
I know all cases are different. The journey following the diagnosis of prostate cancer is a very bumpy roller-coaster ride, and for some much more than others.
I feel this would not have been possible without the love, support, encouragement and emotional strength of my wife. She is not only my best buddy, she is my hero.
My advice from experience is this:
Start penile rehabilitation early (extra resource: Touchy Subject penile rehabilitation guide)
Be patient and persevere.
Do not tolerate incontinence beyond 12 months post surgery. If the signs aren’t positive, consider the Artificial Urinary Sphincter.
A Touchy Subject side note: We also recommend reading Alan and Fiona White’s article for ideas on what to do if you are still incontinent after 12 months: Click here to read.
Talk to your family and friends about how you feel and join a support group if necessary.
If you’re still struggling, don’t hesitate to seek professional help. This is not your fault. You deserve to be happy.
Don’t ever give up.
If you are in an immediate need for help, please contact Lifeline: 13 11 14 - www.lifeline.org.au.
MEDICAL DISCLAIMER:
This article reflects one person’s experience and is for informational purposes only, this is not intended to substitute diagnosis, treatment or advice from your medical professionals.