Hi,
I have had stress incontinence for about 4 years following prostate surgery. Up to 3 pads a day. Today for the first time tried a Cunningham clamp. Worked well, no leaks at all, but after a short while uncomfortable feeling, sometimes a urine surge from movement that would normally go into pad now feels kinda of burning from being held in, on the first notch so not sure if tighter would stop the occasional surge altogether. Any advice would be appreciated!
I have had the exact experience; up to 3 pads a day so I tried the clamp but after a few hours I had to remove it as it burned and was quite uncomfortable. I’m looking at having an AUS put in so I’m following this discussion.
Izzie
I tried different notches on the clamp with no change in the burning. I’m following this, hoping others have had different experiences and can offer some advice.
Scott,
Thanks for the feedback. I was disappointed that it didn't work better.
I looked at the sling but since I had radiation treatment my urologist advise d that it wouldn't be effective.
AUS is interesting but seems like a big step. Worried that it would malfunction and I couldn't go.
Keep me posted!
Thanks
I too was disappointed that the clamp didn’t work. Ihad my prostate removed robotically 2.5 years ago and since then have been challenged with incontinence, not horrible but about 3-5 pads a day. I had a sling put it about 9 months ago and I improved to 1-3 pads/day, not bad but not great. My current debate is to live with where I’m at or go the AUS route; surgery, recovery, etc... I’m 52 so leaning towards the AUS as I’m hoping to improve my quality of life for the long term and from what I’ve read the AUS has about a 95% approval rating. Anyway, not sure if this helps much but feel free to reach out via this forum or email me directly at
Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.
Scott,
It is interesting that you had the robotic surgery and still had continence issues. I had regular surgery
and thought I made an error in not going robotic.Who knows? I had surgery over 4 years ago and had negligible PSA for 3 years and then it climbed to .2 so I decided on radiation, Now back to negligible for the last 2 blood tests so far so good. As I mentioned I am thinking of the AUS too. Worried about potential problems but I see the high satisfaction rate too.
If I was your age I would probably get it for sure (I am 65).
You are fortunate to live in a place and time with so many safe and affordable options for BPH & PCa treatments and assistance. I am almost 3 years post open RP with slight leaking sitting and lying and constant extreme voiding without any feeling of it while active. I was warned of only a few months incontinence and most of my contacts and my urologist’s said patient history appears to be not much more than that. My urologist now claims I will be incontinent for life and no mention was ever made of clamps which I assumed would be counter-productive and uncomfortable. I was 75 last February and my BPH>PCa experience is:
In Australia from 2006 to 2015 I was prescribed Alpha Blockers for a moderate BPH condition. While they had known since 1995 their maximum dosage would need an increase beyond 2 years no one had bothered to do the necessary research to allow it to be prescribed. I now see all the other BPH treatments available elsewhere and become somewhat envious.
In 2013 when Alpha Blocker benefit became a little less beneficial, as expected, l was instead prescribed DUODART together with the maximum dose of Alpha Blocker (Prazosin). DUODART’S Dutasteride component was indicated to increase the risk of serious Prostate Cancer (PCa) but this risk was not listed as a “side effect” and no warning was provided by Urology. The Tamsulosin component of DUODART took my Alpha Blocker intake to double the researched limit they would not prescribed anyway.
When PCa (Gleason 3+4) was MRI diagnosed in late 2015 Radical Prostatectomy (RP) was recommended over radiation. The latter was deemed to cause fusing of Prostate to Bladder and cause damage to it if Prostate needed to subsequently be removed.
I was told I may have a few months of incontinence following the RP procedure. I was not told that though my surgeon was an expert in robot assisted RP it was not available in my city. As I was being anaesthetised I asked the operating assistants where the robot was and they pointed to the surgeon. I now believe robot assistance was then available in our State Capital in a selective theatre at some $20,000 non-assisted cost. My almost 3 years of post-op difficult complications and serious incontinence and urination difficulties would definitely make that cost insignificant to me now.
It seems no thought was ever given to the effect Alpha Blockers’ 9 years untested relaxing of the smooth muscle tone at bladder neck would have post RP. How after loss of prostate the shorter, straighter urethra with its effect on penis head and length would cause serious incontinence and urination difficulties. There was no preparedness for so much of this.
I am now extremely concerned at the lack of data, feedback and research into BPH treatments. DUODART is a PBS drug and can only be initially prescribed by Urologists who would eventually know outcomes yet no data is collected from them. A few post DOUDART PCas have been advised by the drug’s supplier to our Health Department ineffective Database of Adverse Events, all are without Gleasons. The bulk of post-DUODART cancers likely remain unknown. Pre-release trials for Dutasteride were always going to have doubtful cancer findings as all participants were suspect PCa sufferers pre-trial. The supplier uses this weakness in their own sponsored trial to deflect the increased serious PCa outcome found. There is no real post release attempt to learn what effect these drugs, the surgery or loss of the prostate and the bits lost with it will have on hormone or immune processors heralding in other debilating complaints. Durasteride alters conversion of testosterone to dihydrotestosterone (DHT) to hopefully and unnaturally manipulate prostate cell structure. There is, it seems, no feedback to learn if other glandular processors are altered leading to immune system manipulation and other serious conditions. Cancer is the unnatural manipulation of cell structure and needs no help in this regard. There needs to be some post-treatment evaluation of BPH medications to save us from needless loss of quality of life and manhood.
I have learnt much since my RP’s aftermath and my now Polymyalgia Rheumatic (PMR). Things I should have known before taking Duodart. There is so much more no one knows. Like what is the full function of the prostate gland and other glands or hormones that could be affected? Where PMR stems from?? They will one day know these causes and functions and what these drugs do to our fragile immune system but taking a punt with us now is not what I should have let them do. In Australia, for me there was only doubtful medication or TURP for BPH and open radical surgery or radiation for PCa. The TURP and lack of robot assistance was never even mentioned. I doubt this has changed much. The Health Department in 2015 preferred Ultrasound guided biopsies for PCa detection even though Urologists had known Ultrasound had been ineffective for PCa detection since 1990. Had I not insisted on MRI use that was not supported by my Urologist or Government I would still be treated for BPH in some outdated manner.
Our natural bodily functions are so wonderful it’s difficult to perceive. When we peruse the internet, which we really have to now to protect us from sub-standard medical treatment, we marvel at the extent of the scientific knowledge displayed. It’s frightening though when you see the pieces in between that is not known yet they still keep pushing these drugs anyway.
After I forwarded a copy of a similar Patient Forum post of mine to our Therapeutic Goods Administration they began advertising all over the forum. They boast an “encouraged to report” scheme with no proper system or likelihood of worthwhile data or its evaluation and proper correction. Not good enough.
Barrie Heslop
I neglected to include in my last post something that may be useful. My PMR took many months to be diagnosed. Attempts to improve my many muscle pain included physio in a heated pool. I was at first reluctant because of the incontinence but then got in and out of the pool frequently to urinate. I found the amount I was passing out of the pool indicated I was not voiding in it. I was able to stay in the warm water for hours, I believed from the volumes, without causing any problem. I suspected the retention was more to do with the pressure of the water on my trunk rather than just the warmth of it. I purchased some “skins” and found that while wearing them over my padding I was retaining more fluid when active. I had earlier found the lower body exercise regime my urologist referred me to did not work for me while others found they did the job. I don’t know if my failure to achieve results there was the result of surgical sphincter damage, larger prostate causing more loss of urethra making it straighter and less likely to be impacted by tighter muscle pressure on it.
Also my complete bladder neck blockage was severely mistreated at hospital emergency when the triage nurse believed TURP was short for Radical Prostatectomy and recorded it so. Attending staff would not therefore call in urology and kept trying to ram catheters through the prostate that wasn’t there. They initially ignored my demand for urology even after viewing my scaring then panicked as bladder volume increased to kidney damage levels. Urology was eventually involved but damage could not be assessed.
Anyway try skins or if they don’t work possibly something tighter in wet suit area. I don’t like the thought of clamps.
Barrie H
Thanks for the feedback, I met with my Urologist yesterday and have AUS surgery scheduled for July 16. I've seen the surveys with the high satisfaction rate regarding and AUS so hopefully things will go well.
In regards to my robotic surgery. The initial procedure went well but we think post-op complications, a clogged catheter, may have caused my current incontinence problem.
Glad to hear your PSA is low again following radiation.
Thank you very much for all the information. Could you provide some more detail on what you call "skins'?
I am in the US and not familiar with this term.
Good Luck Scott! I hope everything goes perfect.
My main fear is not that the unit fails and urine is passed but that it builds up and the release doesn't work. Probably a very small % of times . I need to confirm with one of my urologists. ( I have 2 now!)
Hi Izzie!!
Skins is a trade name for a brand of compression sportswear sold here in sporting goods stores. They were priced at around $A90 but can be discounted to the high $A60s from memory. I think any elastic or rubber compression shorts may be as good or better for our purposes. Perhaps bike-pants (without inbuilt seat) or cut down wet-suit. Perhaps someday they’ll make something just for us. I recall when I had severe fungal infection shortly after my op. They would not re-catheterise so it could not be treated and I was left to just grin and bear the pain. Uridoms would not work as pieces of flesh and dried blood kept fouling the head and lifting the Uridom. We invented our own PVC pipe, part of electrical lead connection and a catheter bag and managed to treat the condition ourselves without so called professional help. Perhaps someone on this sight may invent something just for us. Part of “Skins” web follows:
A BRIEF HISTORY OF SKINS
In 1996, an Aussie skier had a bold ambition to feel ten years younger so he could ski all day, party all night and be ready the next morning do it all again.
His starting point was the knowledge that improved blood circulation would supply more oxygen to his muscles, helping them work harder for longer and recover faster. So he consulted with NASA and other experts to confirm he was on to something. Turns out he was.
Soon word got out that there were these things called SKINS that improved your power, speed, stamina and recovery. Pro athletes were the first to start wearing them. Before long, amateur athletes joined the party.
SKINS ARE NOW SOLD IN 31 COUNTRIES. WE'VE GOT OVER 160 PRODUCTS AND MANUFACTURE MORE THAN 100,000 UNITS A MONTH. AND COUNTING.
Barrie Heslop CARDIFF AUST
Fantastic! I will search on-line and in the big sporting goods stores here.
Thanks again!