Cunningham Clamp Discomfort

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. 

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