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Incontinence Improvement with Pelvic PT?
Prostate Cancer | Last Active: 14 hours ago | Replies (53)Comment receiving replies
My first post...and allow me first and foremost to express my gratitude to everyone on this forum! I'm three weeks post-RARP, so early days yet, but finding the prostate cancer support group on Mayo Clinic Connect, and this forum especially, has been a godsend. Although I love my urology/oncology team (at the U. of Pennsylvania Hospital), no one on that team advised me to learn about or begin kegels/pelvic floor exercises prior to surgery - I did so thanks to you. Now that I am post-op and working through the steps of recovery, I have a couple of observations to share, mostly for folks who stumble onto this forum like I did, pre-surgery.
First is how enormously valuable it was to start kegels several weeks before surgery. For me, there was a huge "aha moment" when I returned to doing kegels after having my catheter out - and that aha moment was caused by how different it felt to do kegels pre-op from post-op. Pre-op, I had all the strength and anatomy "down there" and so kegels were easy to learn and do properly. After surgery, kegels felt TOTALLY different. I assume this is due to the loss of musculature and post-op weakness in the area of the pelvic floor. But if I hadn't been doing the kegels prior to surgery, I would not have had as a reference point how they felt in comparison to post-op. Knowing that difference was hugely helpful. Now that I am two weeks post-catheter, I can already feel my pelvic floor strength increasing. I wouldn't know what that felt like if I hadn't done kegels pre-op.
(Note: I do not yet have a PT to guide me in doing my pelvic floor exercises, as I live far from Philadelphia, in a rural area, and the closest PT who has that specialization is an hour's drive from my home. As a result, I learned much from this and other forums on MCC, Michelle Kenway's videos on YouTube, and other online sources, though I did eventually find someone at U. Penn who advises on pelvic floor exercises and who gave me very helpful guidance. I am still experiencing every kind of stress incontinence at this point, but have high hopes about the future and once I am driving long distances will engage a PT.)
My second observation is that reading this entire forum - i.e., two years' worth of posts - was a bit of a roller coaster ride. Everyone is so giving with their experiences, but reading them all in a row resulted in a bit of disorientation due to the diversity of guidance provided. It sort of reads like, "Do kegels *this* way!" "Do them *that* way!" "Don't do too many!" "Don't do too few!" "Do them strongly!" "Don't use too much strength!" etc. I assume that this is because nothing seems more individualized in the post-RARP community than our experience of incontinence and how we overcome it. And as well, PTs have different perspectives and experiences that don't always agree with one another. I don't have an opinion on which approaches or guidance to follow, but thought it worth describing my experience reading through all the posts. I suspect that for each of us, finding someone (a PT or someone in your urologist/oncologist's office) who can help guide you is the most important thing.
Thanks for listening. And thanks again for being such an amazing supportive community!
Replies to "My first post...and allow me first and foremost to express my gratitude to everyone on this..."
I am glad you started early and I appreciate your posting
1. I too was confused and misguided for a while about Kegels
2. I did some research- staying away from commercial sites ( e.g. the incontinence center. Fix incontinence .com and even some urology clinics I went for PubMed articles ( NIH sanctioned articles There really is only one mega analysis state of the art article (cited below) on post-prostratectomy urinary incontinence
3 among other things it cites that even the key researchers in the field do not agree on the number of kegels a day to recommend In fact one of the recommendations of this report is that there is a need for research in this area. (what does that tell us about what we are doing now? 🙂 )
4 another big discrepancy is the reporting of those that have incontinence problems following prostrate removal. Some sites report as few as ten percent while others report closer to 80 ( the Cancer Research UK reports 70%)
Bottom line some additional research in both areas could e helpful
my take aways
1. I love going to my pelvic floor specialist she has years of experience just doing this and I trust her
2. From my own experience I know that sometimes I need to rest my pelvic floor muscles. I have less incontinence in the mornings after sleeping and giving my bladder a rest (gravity helps as well) this tells me I need both strengthening and training and resting. I am 10-12 weeks out ( Jan 15 for surgery and Jan 39 for catheter removal) and i still occasionally pass blood this tells me things are still healing
3 I know I was doing them too long, too hard and too often at the beginning. I am glad I slowed down. I want to get better badly but slowing down is part of my getting better.
4 the biofeedback helps. Unfortunately it does not seem that males can get a biofeedback device in the United States ( you can in England, Canada and Australia but they will not ship to the United States) the best is one with an internal sensor/probe (rectal)and all it does is provide feedback. The benefit of this is making sure you are really relaxing your pelvic floor muscles. I have gone for hours not relaxing these muscles.
5 Men can buy biofeedback devices however they really are pelvic floor exercisers/simulators and my therapist warned me to stay away. She had a few patients that these caused significant complications. Learning this< i will not go near one.
6 drinking a lot of water helps.
Incontinence sucks I hope your experience is positive
@rich24, how are you doing with the Kegel's? Are you able to keep at it, daily?
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I'm the "Kegel guy" of late because this was a focal point for me for four months prior to RARP. I've often mentioned not doing too many, doing them correctly, etc.
I'm surprised you did them so soon after your surgery, I didn't resume doing them for a couple of weeks because that's a lot of stress to put on your internals and I was told to avoid them for at least two weeks and likely more a month. I did them lightly as a test after a couple and could feel discomfort and stopped.
Now I didn't have any issue I was trying to resolve, but continue to do them as a safety net because I came out of the procedure with no issues and I can't say they were due to kegels or not but I'm not risking it 😉.