Hello, I am 68 years old and I am new to this Forum.
I was diagnosed with Prostate Cancer at the beginning of 2014. My PSA level was 23.
I had 12 Biopsies and 11 of those were positive. I had a 4+4 Gleason score and T3b disease results. I began 24 months of Hormone treatment in March 2014 and had a TURP the following month. In July 2014 I commenced 39 FRACS of Radiotherapy treatment over 7 weeks. The radiotherapy killed the cancer but left me with Proctitis.
Over a period of time I became fully incontinent, using lots of pads and spending a fortune buying them. Earlier this year I had my AUS 800 (Artificial Urinary Sphincter) implant and six weeks after that it was activated.
The difference it has made is amazing. Instantly I went from regularly using perhaps twelve Level 3 Tena pads per day and a Tena Comfort Plus pad overnight to using NONE at all.
Since the day of my activation I have never worn a Pad and have never had any leaks. The AUS is working brilliantly.
However, a few weeks after the activation I began to experience an uncomfortable stinging sensation whilst urinating. I then began to get the same stinging sensation whenever I stood up from a seated position. This seemed to me to indicate a urinary tract infection (UTI) so I eventually managed to obtain an appointment with my GP. The day before that appointment I had a follow up appointment with my Oncologist during which time my symptoms were discussed and a course of Antibiotics was prescribed. The Oncologist also advised me to cancel my GP appointment, which I did.
Those antibiotics made no difference. So eventually, I again managed to arrange an appointment with my GP who prescribed an ointment and sent my Urine sample for analysis which later indicated nothing.
About a week later I had a pre-arranged follow up appointment with my Urologist during which time my symptoms were discussed. I provided a Urine sample and a dip test revealed nothing. I was then prescribed a course of different Antibiotics.
This also failed to make a difference and my symptoms still exist. I’m now starting to wonder whether there might be an issue with the implant itself which is causing the stinging sensation. The device is clearly working because I still do not need to use pads and when I operate the pump I can urinate freely, albeit painfully.
Anyone had a similar experience?
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GeorgeUK
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Hello George. I reported a stinging sensation to my urologist as well and they ran the camera down my penis and determined that my urethra was eroding. I had emergency surgery the next day, I had had the AUS active for 3 months and loved the freedom that came with it. My emergency surgery was just last Friday. I have had to wear a catheter the last week to let the urethra heal. The plan as far as I can tell is to let the urethra heal (2 months of pads) and then reinstall an AUS in a different position.
The erosion was due to the radiation i endure soon after the radical prostatectomy. There was no time for the area around my prostate to heal so finding good tissue on which to attach the AUS cuff is the problem.
I was hoping somebody here might have found a different solution.
Hi Trivista, thanks for responding. I hope that after the healing process you have the AUS installed and have no more difficulties.
My Urologist informed me a couple of days ago that they will arrange the Cystoscopy (camera) for me within the next few weeks. I would hate to be without the AUS but hopefully that won't happen.
It was devastating new to me George. It seems like such a setback, sure, but to lose the sense of normalcy I had regained was a brutal thing to come to grips with. But, I am alive, I have hope, I will endure, I will continue to look for a new and or better solution.
I can understand exactly what you mean and how you must be feeling. I too would be devastated if I have to have the AUS removed, even for only a small period of time. You seem to have the right attitude, you're alive and they could possibly find the solution tomorrow. Stay positive.
Today I underwent a Urethroscopy and it confirmed that like you, my Urethra is eroding in the area where the AUS cuff encircles it. My AUS will be removed in a few weeks and at present, it is not expected that another AUS800 will be fitted.
I am 4+ weeks post op now and using about 5 or 6 pads a day.
There is at least a 3 month wait for my urethra to heal before they will consider replanting an AUS . I am trying to find a specialist surgeon who will take me as a patient and perhaps, if not another AUS there is some other solution.
Tough finding a doctor capable of the task. One urologist I know is referring me to Duke Medical but I haven't heard from them yet.
Keep in touch. I will let you know what happens next for me...
Thanks Trivista. I wish you luck in your search and I look forward to hearing from you.
Without doubt the AUS is an amazing piece of kit and was exactly what I had been searching for. Unfortunately for you and I the radiation treatment we both had appears to have made the Urethra very fragile and unable to resist the pressure from the cuff.
My implant was deactivated yesterday and the stinging sensation that I was experiencing whilst urinating no longer happens, which is a good thing but the realisation that I am going back to living with pads again and having absolutely no control is depressing.
However, it is what it is but life goes on and that is the main thing isn't it?
Hi Trivista, I hope you have had some luck in your search.
I had to attend A&E a couple of weeks ago as I was in retention and in immense pain. They kept me in for several days and brought froward my planned operation. They completely removed my AUS and everything that went with it.
I was discharged from Hospital with a Urethral Catheter and also a Suprapubic (SPC) Catheter.
In seven weeks time I have to have tests to check the capabilities and condition of the Urethra and if that is okay the Urethral catheter will be removed.
The Suprapubic Catheter is likely to be with me for life.
Hey George....Sounds like a really difficult time you have had. So sorry to hear it.
I'm in for a cytoscopy on 9.25. Hopefully I am a candidate for another AUS. I have an appointment with Dr Andrew Peterson at Duke Medical in North Carolina November 28. He is well regarded and I am hopeful. Is the supracatheter difficult to manage? Is it easier than 10 pads a day?
I shall be keeping my Fingers crossed for you re another AUS implant.
As for the management of the SPC, it is early days yet but so far it has been no bother at all.
Obviously, there is a tube sticking out of my tummy which goes to a leg bag and overnight we have to “daisy chain” the larger bag onto the leg bag to increase the capacity.
The leg bag needs to be changed every six days but even I can do that.
Together with the Urethral catheter that I still have, the tubes are a minor nuisance, and it isn’t great having a shower with the bag and tubes attached but compared with having to wear 10 or more pads a day and all that goes with it, the SPC would get my vote.
It isn’t perfect but it beats having to endure all those soaking wet pads without a doubt.
I haven’t yet driven whilst wearing the SPC but I don’t anticipate any major problems with it. On a positive note, I shouldn’t need to stop for a pee break as long as the leg bag is there.
The cytoscopy was cancelled because I have an appointment with a urologist at Duke medical Nov 29 with a specialist with the intent of getting another AUS.
Sorry but I have only now realised that I forgot to reply to you. Apologies for that but we are on holiday and it slipped my mind.
Is your man at Mayo the Magician that you had hoped for. Are things looking more positive for you?
My main problems with the SPC is the bladder spasms. I have been having loads but my Urologist suggested changing my medication and it appears to have helped. I still get the spasms but nowhere near as many.
I do believe I have found someone who can help me. I had my first appointment at Mayo on the 19th. I return 12/12 to meet a Dr Petrou. He will do the surgery if he considers me a candidate. SO far I have no reason to believe otherwise.
They have a different approach and different placement in mind for the AUS.
I learned that the cuff may have been too tight the first time and that contributed to the erosion.
Also that if the AUS prevents leakage by 80%, it is considered a success. My leakage was about 100% less so perhaps the cuff was see to tight.
More will be revealed.
Thanks you for your reply.
I hope the new meds you are taking reduce the spasms even more. The amazing thing is there always seems to be another solution, another "let's try this" as we go along.
12/12! A few more tests, including the cytoscopy and hopefully, I'll be good to go!
Hi Trivista, I'm pleased to find you so positive and optimistic.
I'm intrigued about the different approach and placement for the AUS, I wouldn't have thought that there was much variation in where it could go. Did he elaborate on that at all?
It's interesting to read what you say about the cuff being too tight as that is exactly what my wife and I have been saying about mine. I also enjoyed 100% no leakage despite being led to believe that it would never be that high.
I am not sure that another AUS would ever be an option for me as I believe that my Urethra is completely blocked. There is never any urine from my Penis.
I am still on holiday and therefore reluctant to try anything radical whilst away from home but when I return to my home address I intend relying on a flip flo valve (tap) on my SPC to see if I can dispense with using a bag and simply open the valve when I detect the need to empty my bladder.
Thanks for asking. I was trying to find our thread here.
I had the surgery on the 21st at the Mayo Clinic in Jacksonville.
When I came to, I met the surgeon, Dr Petrou, and he told me the surgery was very hard but he was pleased with the results. The difficulty was with scar tissue from previous AUS and tissue erosion from radiation.
It has been a Christmas to forget. The pain is brutal at times and because pain meds make me sick, I have had to tough it out. And I developed a bone shattering cough that rattles my body and makes me wish I had decided to stay with the incontinence and pads and diapers.
This is my 5th day post op (4 days at home) so I believe I'm om schedule.
I feel just a bit better each day.
My next appointment, follow-up, is January 8 and I will know more then.
I have to believe this is all worth it.
Thanks you so much for asking..
How are you doing George? Have you become accustomed to teh SPC? Did you go with a flow valve instead of a bag? How are you feeling and are you satisfied with the quality of your life?
That was the driving force for me. I want to be able to go for a walk, play some golf, get some exercise, hit the gym etc but the leakage was so great, I took the chance.
Hello Trivista, thanks for responding. I personally don’t find the website to be very user friendly and it takes me ages to find our previous exchanges.
I’m so very pleased for you that they were able to go ahead with the operation to fit another AUS. Was it possible to locate it in a different position as hoped?
Presumably, your urethra was not too badly eroded. You do seem to be suffering badly during the recovery but we both know that it will be a small price to pay for the successful procedure. Here’s looking forward to 8th January for you.
As for me, the changes to my medication has made things a bit easier for me but they are not consistent. Some times I have more than a dozen spasms per day and other times I might have almost 2 days without a spasm.
I have tried several times with the flow Valve but it seems to cause problems of its own.
I have the valve closed but I also have the bag plugged into the valve outlet. When I feel the need to pee, I open the valve and as the urine flows into the bag I can see how much urine I was able to hold in my bladder. It is usually about 200ml.
It seems as if the urine flowing out through the valve results in a vacuum within my bladder and the sensation in my bladder is awful. The last time it tried it I also passed an awful of lot of blood (a lot more blood than urine) - generally I don’t see any blood when I am not using the Valve so I have more or less given up with using the Valve.
My Urethra continued to erode and has become blocked and closed for good. Not a drop of anything passes through my penis and hasn’t done for months now.
Unless we can find a radical solution I don’t think I will ever have the opportunity of another AUS being fitted.
I have to be careful with the SPC but it causes me no pain and I think it can be lived with. I can still go walking and do pretty much as I could do before all of this started. When the warmer weather returns I am confident that I can resume working in my garage with my woodworking.
What I do have a problem with would appear to be an Infection in my Penis. This has been an ongoing problem and one which we have been trying to eradicate with ointments. I am seeing my GP about that problem tomorrow and hopefully he will have a solution.
Still alive, still smiling and still above ground. ✅
Who knew peeing would become so important in our lives?
Something that came so natural at birth, and so common as a daily experience, taken for granted, sometimes a nuisance, always simple and so matter of fact, it is now the Holy Grail!
And then there WAS sex!
You don't know what you've lost til its gone.....
You sound like a trooper and face your troubles as they come. Of course what choice do we have?
I have been a guest of NHS in Southampton fro a few days in 2009 with a heart issue. Not sure where the NHS compares to Mayo but I felt well cared for and treated kindly by some real medical magicians.
I did ask about urethra reconstruction and they said there have been instances of inner cheek tissue used to reconstruct the urethra but these cases concerned strictures.
Not sure if or how far they have come but it may be something worth exploring.
Of course, given the pain of the last several days, I never want to see another operating room.
Happy New Year, George.
I wish you the best.
Thanks you for always responding to my posts.
There is an expression common to Bostonians (of whence I came) that is used to denote the exceptional in any area and that expression is phoenetically "Wicked Pissah"
So long may we roam and Wicked Pissah be our goal.
I hope that things are getting easier for you and the pain quickly disappears. The cough can’t be helping.
My Urologist has never appeared to support the idea of a Urethra reconstruction and says they have never really been successful. Perhaps in due course I might look for another opinion on that.
You do just have to put up with whatever happens don’t you and as you say “what choice do we have?”
Like you, I don’t relish the thought of returning to the Operating theatre but if it resulted in me becoming a Wicked Pissah I might jump at the chance. Never say never.
Stay positive.
Cheers and best wishes and a Happy New Year to you too!
My wife and I are so pleased for you, and glad to hear that you are improving every day, three weeks will have passed before you know it. This one will work for you.
I see my Urologist in February for a follow up appointment and we have a few questions to ask but I am not expecting to hear that the AUS is still an option for me. It’s what it is. Disappointing but I can live with that if I have to. It could all be so much worse.
So Far so good! It has been a week since AUS activation. I'm holding my breath a little, especially the first few days. I had similar sensations as last year when urethra erosion forced ex-plant of first AUS.
But I have been patient, prayed my ass off, and it seems to be Ok right now.
I’m fine thanks although I do have a couple of issues to deal with.
I suffer very painful bladder spasms, sometimes they occur whilst I pee but other times they occur at random and can be in the high numbers.
That is due to be addressed on Tuesday 5th March when I will have lots and lots of Botox injections into my bladder wall which will hopefully relax the relevant muscles and eliminate the pains.
The other problem is that I keep picking up infections which are detected in my urine samples and for which I keep getting courses of antibiotics.
The most recent was detected as a result of my latest pre op assessment and I started a new course of antibiotics yesterday.
Hopefully this infection will disappear quickly and will not lead to a cancellation of my Botox treatment next week.
March 5 is a big day for me. I got sober on that date 25 years ago.
Those spasms sound really uncomfortable. And infections...so sorry.
I was thinking this morning how we adapt to the changes in our lives.
How urination was so natural so simple so automatic.
How erections came and went, were enjoyed and taken for granted.
How sex as young and virile guys was such a pleasure and source of joy and satisfaction.
But my how we adapt and adjust to the loss of these functions and how staying alive supersedes them all.
And we can still have happiness and satisfaction in our lives.
Except for the catheters, I adjusted quite well. I am on the other side of incontinence now and feel great but I was in this same place for a few months last year until the first AUS failed.
So I know I have what I have "just for now". Life changes. We adjust. We still find fun and love and laughter. We aren't dead. We can still be useful.
I hope the injections bring you comfort and Ease George. I hope the infections can be overcome quickly.
And I thank you for taking the time to share with me.
Thanks for your email. Apologies for not responding sooner.
You have done very well achieving 25 years sober. Well done you.
Re the AUS, here’s hoping that the ones we both had last year were from a bad batch and the one that you now have will be perfect.
I really relate with everything that you wrote in your previous message, I couldn’t improve on what you said. We can still enjoy life and cope with whatever has been thrown at us.
My infection had disappeared by the time I was at hospital on Tuesday and the procedure went ahead as planned. I am due to return in three months for evaluation.
I was not expecting an instant elimination of the spasms but so far they appear to have lessened in terms of frequency and pain level.
It's been a while. I hope that you are well. Are things still positive for you?
I stopped using a Catheter leg bag with my SPC in January and I am glad that I did, it feels so liberating having no bag strapped to my leg. I now simply use the tap if I want to urinate and it seems that I am managing that very well.
Never better. At least I'm the best I have been in 4 years since diagnosis.
The AUS is working as advertised. I seem to have healed from the 3 surgeries of ast year. I have started to lose weight (low carbs/no sugar) and I am feeling so liberated. Those tasks and activities that seemed so difficult when wearing pads (8-10 a day) and leaking like Julian Assange have become fun and enjoyable again.
I still have 2 Lupron injections ahead of me, July and November and hopefully some energy will return when those are done, but I feel great.
Looking forward to good weather, working in the yard (garden?) and playing golf.
LIfe is good.
Happy to hear you have made positive changes as well.
It is so easy to fall into and adapt downward, if you know what I mean. To settle for less and become sedentary and grow old. But if we keep trying different things and keep hope alive, who knows what we can manage.
Thanks for your support and friendship.
I hope you continue to find new ways to improve your quality of life and enjoy the time we have.
I've been meaning to contact you for some time and sadly I failed. I just wanted to ask you how things are going for you now? Did you manage to improve your Golf?
Hi Trivista, I am really pleased that at last, all appears to be going so well for you (apart from your golf) and things are much more positive for you. I hope it is the start of a new chapter for you and the future is rosy and remains so.
You asked me to fill you in………
Because of the painful bladder spasms that I was constantly experiencing, my Consultant gave me 15 Botox injections into my bladder in March of this year. That really helped and whilst it didn’t completely stop the spasms, it greatly reduced their severity and that was progress.
Just when I thought things were looking up, on the 8th June I started passing blood and liquid from my Urethra via my penis.
Nothing at all had been coming from that part of my body for the last 10 months since the SPC was inserted, so that was unexpected and a huge shock.
Since then, whenever I stand up or sit down, get in and out of the car, sneeze or sometimes just walking around, I am now peeing urine and most days, blood or bloody Pee.
I have no control over any of it, I’m sure you will remember that situation.
I feel that the Botox is still working but it is no longer quite as effective as it was. We knew at the outset that I would require regular injections of it to control the spasms and the injections have to be at least six months apart. Hence it will be done again in September which apparently is the earliest possible date.
So now I am back to wearing pads 24 hours a day. It has been a backwards step for my wife and me and it’s quite depressing really.
I have today had an MRI Scan which was being done in order to try and see what is happening in my Urethra. Then it will be a cystoscopy and the Botox injections sometime in September.
In 2014, I had radiotherapy treatment and although it saved my life, the radiotherapy has done a lot of damage in the area of my bowel and my bladder.
Apparently, because my cancer was aggressive and had gotten in to the shell of my prostate it had to be 39 fracs. That is what did the damage. The AUS finished it off and as you know, it had to be removed last August.
I worry now that after the camera has been in there in September coming, the contents of my bladder will just come running out all day because I will have even less control over it.
Prior to this latest development, I could handle living with the SPC and not passing any fluids through my Urethra. As I see it, my urethra is all that is giving me problems so I have suggested to my Consultant that she could sew it up or even cut it off and then no fluid could ever pass through it again. Problem solved.
My Consultant is not keen on that course of action.
I have no idea re what (if anything) can be done to improve things. I shall keep you posted if you wish.
I do remember the 8-10 pads a day period. It was so much worse after the first AUS was removed.
My problem also was the radiation so soon after surgery that caused so much damage. In fact the first AUS failed due to tissue erosion in my urethra.
Lucky for me I was directed to the Mayo Clinic in Jacksonville FL.
The Doctor there was able to re-implant another AUS in a different location using a different technique. It has been a whole new life for me.
I have been able to increase my level of activity and travel. I don't feel so anchored to home base.
Are you able to travel? Is the Mayo a possibility?
Surely there are uro-surgeons in the UK who could help.
Apparently there is more and btter real estate along the urethra where anothe implant could be placed.
Mine was further back toward the base of my penis using erectile tissue (no use anymore) as a cushion of sorts to "couch" the sling/noose part of the AUS.
I wish for you that you can find a surgeon who can do the job.
It is night and day if you can manage to find the right person.
God willing you locate that person!
If I can help with any suggestions or information, please ask. I am more than willing to be of service.
Thanks for your response and your offer of help. It does indeed appear that you are very fortunate to have been directed to the Mayo Clinic in Jacksonville.
You ask me “Is the Mayo a possibility?” I could travel but I’m guessing that whatever needs to be done would be very expensive. If I can find someone in the UK who is capable and willing to carry out the procedure that you had then I could hopefully have that done on the NHS (National Health Service) which is something that I have been paying into all of my working life and provides “free” treatment. How good that treatment is, compared to treatment say in America, well who knows?
It sounds very interesting that a different location and a different technique proved possible in your case. It is promising that there was “more and better” real estate along the urethra where another implant could be placed. Is that the situation universally or did it just apply in your case?
My Urologist is a Surgeon and she has been treating me from way back in early 2014 when she did my Turp at the beginning of this journey.
It might well be that I may need to ask for a referral to be seen by another Surgeon but I think that first we need to know the results of the MRI scan from yesterday.
I will make her aware of your treatment and she if that inspires her. At present, I have a verbal appointment for September but no paperwork yet to that effect.
I have a home in Jacksonville. You are welcome to stay there. I am in our home in North Carolina now so that home in Jax is empty. Whether we are there or not, you are welcome.
That may defray some costs if you decide to pursue this course.
Hi Trivista, that is an amazingly kind and generous gesture and I am truly grateful to you.
Obviously, at present I don’t know which way things are going to go and we need to wait until we have the results from the MRI and a meeting with my Urologist before making any decisions.
My wife and I are astonished at your generosity and we are very, very grateful.
Hi Trivista, it’s good to hear from you again. Thank you for thinking about me.
I am really pleased for you that you are doing so well and that things have worked out so good for you. That is brilliant.
I forwarded the information (which you very kindly gave me) to my Urologist about the procedure that you had undergone and the name of your surgeon but I have learned that she is on leave until the day before my next procedure which is now officially September 10th.
That is when I am scheduled to have Botox, Cystoscopy and the SPC replaced.
Things have not improved for me, in fact they have worsened. Every day I pee blood through my Urethra and also from the SPC. Often there are also large blood clots passing through the SPC tube. We were concerned about me losing so much blood so I managed to arrange an appointment with my GP last Tuesday (20th August). She arranged for me to have blood tests and a Urine sample analysed. The blood tests have not indicated any problems but we are still awaiting the results of the urine sample.
I have my Pre-Op assessment this coming Wednesday (28th August) then it is just a question of waiting until after the procedure on September 10th when I will hopefully get some idea of what can be done.
My wife and I are both still so knocked out by your very kind offer and we will never forget that amazing gesture.
I have no idea what it would cost me to have another AUS fitted. The cost of treatment in the UK is not a question that is generally asked. I believe that hospital treatment in your country is usually done under an insurance scheme of some sort and I was wondering if you are able to give me a ball park figure as to the cost of the treatment you just had.
I hope you don’t mind me asking you that question but it would help us to assess the feasibility of me having the same procedure done at the Mayo Clinic if that is possible.
Please do not feel obliged to answer my question; I will honestly have no problem with that.
Sorry to hear of those troubles you are experiencing. Hopefully your next procedures bring relief and perhaps even a plan for going forward.
You are correct that in America we use private insurance. I am pretty lucky to hav a policy that covers most of the health care I access. In fact I pay a good deal each month for supplemental insurance that augments my government medicare a public low cost plan that is taken from my retirement check each month. I opted for this because I am lucky enough to afford it and because if I go into the hospital, and don't come out, Diane, my wife will never see a bill! Don't want her to have to pay for something after I am gone.
So, the biggest bill I saw was for the surgery itself...$52,000. There are/were ancillary costs but I would assume you can get those services provided in the UK.
Its is not cheap. That is probably 40K quid, your money.
That's a lot....but if your surgeon can contact Dr Petrou and Mayo, surely something can be worked out.
In the meantime, I will be thinking of you in September and praying your doctor is openminded enough to explore the possibilities and make contact with Dr Petrou.
Thank you for being so open and so honest. I guess that is about the figure that I expected it to be, I knew it would not be cheap.
I have to wait until the procedure is carried out on 10th September and then they will need time to weigh up the options as a result of what they find (or don’t find) during the cystoscopy - I expect that I will be discharged on the day and told to come back within a few weeks to discuss the next course of action. That will give us time to think.
Thanks again for your concern, openness and interest. I very much appreciate it.
Hurricane Dorian looks dreadful, we can’t imagine what it must be like to be so close to it. My wife and I are thinking of you and your family. We pray that the hurricane passes quickly and does not cause any more damage and devastation.
We have my wife's mom up here and we are monitoring the storm closely.
It seems there is no more weather these days. It has been replaced by Extreme Weather.
Sure the heat in the UK is something unheard of a few years ago.
I was in London in 2013 and it reached 90F and it was miserable. The good news is I was on my way to Aberdeen and it never got as high as 60F my week up there.
So the world is changing and we need to adjust. Or run to High Ground!
Good luck with your Sept 10 appointment. Let me know how it goes..
We are both so glad to hear that you are safe where you are in North Carolina despite the Extreme Weather.
I don’t do Facebook or any other social media exchanges. Do you know of a way in which I could send you a private message which wouldn’t be visible to others on this forum?
So I have a couple of possibilities....Duke Medical and Mayo Clinic, both excellent facilities.
The incontinence since AUS removal has been worse that it ever was. For 2 years following prostate removal, the incontinence was an inconvenience using 3-5 pads a day. But it is so much more severe since AUS removal I use 8-10 pads a day and wear rubber pants as a precaution on some days.
How are you managing with the SPC? I'm wondering if that option might be more bearable than the 8-10 pads daily that I am using now.
It is great to still be alive and healthy (still on Lupron which is managing the cancer nicely) but it is difficult to manage. As long as I am upright and breathing, I suppose I will be looking for an easier better way.
It won't be too long before you find out what can be done eh? Let’s hope it is OK to go with another AUS.
I am still managing the SPC without any significant problem.
Having said that, it is a nuisance when showering, having to circumnavigate all the tubes and straps. Bear in mind though that I do still also have the Urethral Catheter and that also obviously has a tube, but if and when that gets removed, it should be much easier to shower etc.
I have been taking prophylactic Antibiotics since the AUS was removed but my biggest worry is still an infection. Hopefully that will not happen.
To be honest, the only real discomfort or problem I have to deal with is with regards to the Urethral catheter.
It is sometimes difficult to get comfortable in bed because of it and I don't always find it easy to get the G strap into the best position to make the Urethral catheter sit comfortably when I am walking etc, there always seems to be some irritation.
I only have to wait about three more weeks until the Urethrogram takes place and the following day I will discover whether or not they will remove the Urethral catheter. I think that is the intention if all goes well with the Urethrogram.
I still anticipate that the SPC will be a long term fixture but I may be wrong, I will just have to wait and see.
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