Urinary problems after treatment

Everybody seems to know how to deal with Prostate Cancer but are not interested in dealing with the spin offs such as Prostatitis, Incontinence and E/D, and their seems to be very few (if any ) who really specialize and can provide a plan if not to get rid but at least improve the quality of life of those who have it.  My Doctors answer to Prostatitis was I know little about it and was hoping a Specialist would help you and I could learn !.

on the plus side you are still alive, I suffer from all of the above and as time goes on the symptoms increase, as for ED 4 years with no action in that department. but I have a very loving life. the other conditions are dealt with a cocktail of drugs and drugs for the side effects and so on. But for me ,what keeps me going is that I am still here and that cliché rings true, there is always lots who are sicker or had their young life's cut short.   

Having said all that David ,like you i would imagine feel cheated and angry and why me, please don't think of me as some smug little bugger. i am not, i need your input and just reading your plight helps me, because i don't feel so singled out. take care and all the best Tony

Tony, You are correct about the plus side and every day is a bonus.  It just seems to me that all the research goes into Cancer but little spins off to the many side effects it causes. Spent a painful afternoon yesterday with a Nurse trying to self catheterise but it was so painful trying to get it in and past the Prostate that we had to give up,  but did get some of the 640 ml out, yet 12 months ago I had a TURP to reduce the Prostate and now I may have to have another bit taken away, with the same procedure.   Then you hear of others who have no E/D and Incontinence and their Prostate has been removed which leaves you thinking what should I say yes or no to. Thanks for listening, just feeling down with it all.

David

Hi @David43, @tony57,

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Have a nice day!

Margarita

@David43

David

it would seem that you are down the urology road a little ahead of me, and it is something I need to address, lots of peeing issues, visits to the loo at least every hour in 24 on a bad day, and very little control and pitiful flow  my oncologist has suggested me going for the Turp, he did warn me it might only be effective for 12 months as you have found. But its starting to look like this coming year is going to maybe one of the few good years if you understand, So really want to be as active as possible . Are there any cons to having this operation?. Getting back to your point could this be a divide between urology and oncology?.

I have a theory on the ED, maybe its a bit of that playground mentality , not everyone is happy being candid. but for me I have dropped my trousers in front of so many I find it easy to bare my soul as well as my backside ha!.

@tony57

The TURP for me gave me Incontinence and E/D. On the Incontinence front that has improved rapidly now, but I think it is my Prostate which is causing me to hold back water, last night I did not use pads for the first time and was dry all night and never got up. Today I have been put on tamsulosin tablets to aid the Prostate muscle so will see what that does. It was never explained to me that my Prostate would grow again at this time of life ( It must be the only thing that does grow now ! )  Unfortunately Oncology has never been involved in my problems due to my bowel walls being thin after bowel problems nearly 15 years ago.

As for E/D I am seeing a Consultant next week for the first time and like you dropping trousers at Doctors or Hospitals seem common place and not a problem.  Bit worried about our Health Authority running out of cash and wonder what restrictions will now be in place.

David

Thanks to all the shared issues, like yourselves I have most of the post therapy and surgery issues. Luckily I have a GP who listened to me she felt the massive urethral pain could be due to a knicked nerve and put me on gabba pentin which has reduced pain by about 90%. I also attend a charity who support post cancer exercise groups. Its like circuit training but geared to all cancers eg squats, arm lifts side squats hamstring stretching etc, Only about 8 attend and only 2 guys but it is really motivating. It has got me out on the roads walking again. One of the exercises is great big swings both arms across the body I hope it will help my golf swing (when I get enough stamina). At the class we all know we have had the various cancers and those who wish to share do so. I am still working on the pelvic floor exercises in the hope that they will help the urinary incontinence. (3 months post surgery) maybe I live in hope but the hope is keeping me driving on. Now 20 months into the journey and its pissing me or not pissing me off. I will continue with the help of all at Carenity (and maybe the NHS)

It's been 3 months since I had my prostate removed and yes there is still incontinence but am down to using only 2 pads in 24 hours, as for ED well I have been taking ED pills since the operation and there is absolutely no life in the old beast at all despite having a very over active erection reflex before the operation but I live in hope and yes I'm still alive despite a reduced quality of life

Rolymo ,

This will be my first post on this site, : regards -- living with prostate cancer and side effects etc . I had a full medical in the USA which came up totally clean (PSA normal) in 2003 .on returning to the UK in June 2004 and trying to register with a surgery ,was told it was necessary to go though the  same procedure and was told that my PSA was suspect  . Biopsy in 2005 confirmed PC but I was not convinced because at 69 years and still working I felt on top of the world and had absolutely no symptoms. I gave in to pressure that I just could not ignore the facts and expect to live for much longer.  Because I resisted treatment and persisted in questioning everything the Doc recommended a course of Hormone Injections to retard prostate growth and continue monitoring my PSA, all went well for a several of years with no changes,no symptoms/pain or problems . Then one day I went for my routine injection at 3pm and by 5.30 pm I was rolling around on the floor in agony have a really bad time ---emergency neutralizer injection saved the day but I was extremely traumatized for days. It turns out that some "High & mighty" official in NHS decided (without second opinion) that my treatment was too expensive and had to be switched to a substitute cheap generic version in order to continue and meet the requirements of a cost-cutting program.  I ended up getting a "Prostate" injection which produced a violent allergic reaction and on investigation it was shown to be a medication used in the USA  prison service to subdue sexual libidos of prisoners when they got riotous.  That was the start of serious side effects ---but that's another story for tomorrow .

Rolymo,   At that point I refused all medication but agreed to continuing monitoring on 6 monthly basis with blood pressure/sugar tests at home . A very short time later everything started to go haywire ---blood pres/sugar escalated , cold sweats and shortness of breath? lack of energy ,so the doc diagnosed " cholesterol " problem and prescribed "statins" which at the time seemed appropriate. However other signs were surfacing and after a short spell my libido started to diminish. At the time I was writing a book with great gusto and had completed 12 large chapters when suddenly my concentration span shortened , I had to constantly refer to the dictionary and was having difficulty putting a sentence together .Obviously my body was in distress and all sorts of very bad ideas entered what remained of my mind when I could not remember the events of yesterday. The problem was compounded when my doc diagnosed Type 2 diabetics which meant we had to decide which path to go down ----- was this the result of the"nasty" prostate injection , onset of diabetics, blood cholesterol or even Alzheimers.  Again'st the advice of my physician the Statins went first, Diet and Exercise underwent drastic changes and I started to look outside the standard medical practice for other ideas . In 3 to 5 months the memory was mostly restored along with energy & breathing but the libido problem continued even worsened . My doc started with short course at the gym followed by a course of Viagra (No responce) Chia (No responce)next another course at the ED clinic who were very sympathetic helpfull but still No responce , the clinic recommended the big glass vacuum pump which turned out to be partially effective but fiddly, time consuming and a bit un-cool even for the board minded , We then went out and spent a small fortune on Sex toys which help't us both but did not solve our problem , fortunately my other half was very helpfull & understanding considering that I still had no symptoms to confirm the cancer and could ejaculate but not make an erection --- very frustrating !! .Then my doc called me in for a chat about a new medication on the market --- Wow progress ?