Artificial Urinary Sphincter

Hi Valkyrien firstly good luck with your activation on 7 August and I hope everything goes well.  I have kept out of this discussion as I know nothing about AUS but picked up when you mentioned that 

Valkyrien said:

I explained that one of the serious side effects of the Zoladex 10.8mg injection treatment for me, was total loss of any remaining bladder control

I hadn’t heard of this myself.  Is it a known side effect of the drug and if so, do you know how many people get it?  To me, Zoladex has been amazing and I wouldn’t want others to be put off thinking it is a common problem.

David, thank you for your message, which I will answer out from my own experience and what I have heard or seen written. First, like you, I am not medically trained, but just a Master Mariner (Ships Captain). However, I read a lot about the situation and attend our Prostate Cancer group meetings once a month. So far, I have only found one place where incontinence is mentioned when you have Zoladex (same as goserelin) injection implants, as follows here in copy:

For healthcare professionals - Applies to goserelin: subcutaneous implant. Genitourinary Adverse Events.

Very common (≥10%): Sexual dysfunction (21%), erectile dysfunction (18%), lower urinary tract symptoms (13%), vaginitis, breast atrophy, breast enlargement

Common (1–10%): Gynecomastia, incontinence and urinary frequency (post-radiotherapy), ureteric obstruction, pelvic pain.

Here I must add that my own case is very likely to be very different from other cases. You see, my incontinence started in 2003 and various and many different medications had been given me to try to manage my incontinence, all with anticholinergic content, which I have proven to be very allergic to and further to be dangerous for my health.

But I think the most relevant reason for the increased difficulties in containing my complete bladder functions, seen with hindsight, were my six Botox intravesical injections in my detrusor muscle / bladder walls. The first such Botox intravesical injection with 100 units on 4 April 2014 had to be done in a research hospital in Melbourne, because it was new and not yet accepted as a treatment by our Australian government. Two mores such injections took place in May 2015 and Aug. 2016. The next three Botox intravesical injections with 200 units each took place in July 2018, Aug 2018 and finally in March 2020.

Then my Professor in Urology and I agreed that indications were that it was not good to continue this type of treatment because of a potential future negative working situation of  my detrusor muscle. The detrusor muscle plays a vital role in two main phases of bladder function. The clinical significance is that the dysfunction of the detrusor muscle can lead to various urinary issues, such as urinary incontinence or retention.

Today I can easily believe that the six Botox injections done into my bladder in the years 2014 to 2020 are the main reason for my incontinence. And with the Zoladex injections added now, that was simply over the top and not even the thought of bladder control was possible anymore. That is why I see my severe incontinence situation different from other PC sufferers.  I do now have my last hope for the said to be 90% success with the activation on 7^th August 2025 of my AMS 800 Urinary Control System after my AUS operation on 4^th July.     

In the meantime, I would like to know more about your good experience with Zoladex, as you said. How long time did you take the Zoladex, when did you stop for a long time and what was your PSA at that time. Did you PSA increased a lot and for how long time after you stopped the Zoladex injections. The postponement of my third Zoladex 10.8 mg injection, is the picture for me until my PSA velocity shows more than 0.45 ug/L/year and my quarterly PSA test results shows above 3.0 ug/L. First then would my 3rd Zoladex 10.8 mg injection be done as a single injection. This would be followed by PSA tests with results, up or down, to determine my next step. Does that sound a bit like what you have been doing - or what?    

Hi Valkyrien I started Zoladex (Goserelin 10.8mg) just over 8 years and have not missed a 12 weekly jab since then.  My Info can be found on my bio (by clicking on my name or avatar).

Hi David2017 - Thanks and what in all those 8 years have your max PSA been? I am really surprised about your story, then realise that I would not be able to cope with such a continous Zoladex injections scheme, due to my severe side effects from the Zoladex. I would really appreciate if also any other members could write here about their Zoladex intake and related PSA experience. My last Zoladex injection was on 2. December 2024, 7 months ago, and my PSA is still falling and is now 0.020. I will still come back no later than AUS activation day 7 August.Valkyrien     

Hi , 

I have incontinence following a procedure. I constantly leak urine and am also waiting for an AUS . Can kegal exercise cure this or am I wasting my time? 

Hi Valkyrien , My experience over the 8 years (36 jabs) has been hot flushes (sometimes intense others very mild), fatigue (it makes recovery after chemo or RT harder), ability to concentrate (although that could be age related), weight gain (stomach and moobs).  Would I do it again - without hesitation as otherwise I would be dead.  
PSA at the start was 74, after chemo, RT and HT it dropped to 0.1 (in those days it was only given to 1 decimal place).  So for about 5 years it remained 0.1 and then started to climb slowly as a new metastasis in my sternum was starting.

I am fairly sure that these days with new treatments at the start, I wouldn’t remain on HT for so long, but my oncologist is adamant that I need to remain on it for life.  She has done well so far and I trust her judgement.  Hope this helps, but ask any questions.

A friend of mine has an artificial urinary sphincter fitted.  He's had it about 6 years.  Completely changed his life.

He became totally incontinent a year after a Prostatectomy.  Had it done on the NHS in Newcastle upon Tyne.

He swears by it, just has to keep pressing the button.  He did have a mishap though, trying to ride a bike, when the inevitable happened.

I know there aren't that many of these carried out.  I was talking to the doctor who performed the procedure at Maggie's a couple of months ago.