Penis Shortening post bladder removal

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So after going through the wringer to finally push myself to confirm with urology that I will have my bladder removed + prostate + seminal vesicles etc instead of 12-16 wk chemo and then possible radiation , I discover via American health / urology sites that is is also common along with ED (which I am barely coming to terms with) that due to the prostate also being removed the penis also shrinks by a considerable amount.....I mean I am already extremely worried about how I will cope psychologically...and now this!!

My urology dept never mentioned ED when discussing BRemoval and I get a curt answer when I do of 'we advise patients to seek help via viagra etc...but not a bloody bean about shrinkage...why?? I think it extremely unprofessional and lacking empathy....

Now I am doubting what to do all over again...Bladder Removal just keeps on giving.....

Thanks for reading...hope all well 

  • Hi  . Another spanner in the works over your decision. I went a different route, so can't help, but hopefully some of the guys who went with removal can help. Best wishes.

    Best wishes to All,   rily.

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  • When my OH was offered radical cystectomy as 'an equal' option with more bcg or try Mitomycin, they never mentioned ANYTHING [yes shouting] about loss of sexual function if he picked that option. Totally agree extremely unprofessional and lacking in empathy. So what if he is now [5 years on ] 78, we are still at it. Our lovely [Serbian lady] old GP gave him a permanent viagra/sildenafil prescription years ago saying we should expect to indulge 2-3 times a week as it is good for us mentally and physically. Apologies for any offence or distress to readers for whom they have had to accept the loss to stay alive, but just saying to demonstrate what a really good doctor's attitude CAN be like. 

    Thinking of you Pienmash, you have all our support at this tough time.

    Denby

  • Hi again pienmash,
    My surgeon used a nerve sparing technique when I had my Cystectomy. It worked for me but that’s not to say it will for all.
    But you should ask about nerve sparing.

    I’ve not heard of (nor experienced) penis shortening so can’t comment further on that.
    I was 55 when I had my surgery so quite young for the op so that may have helped me?

    My team in Charing Cross hospital were brilliant and covered all eventualities (no mention of shortening) before the op, but thankfully I didn’t need the advice as life is as it was.
    A bit of NHS postcode lottery that went in my favour I suppose.

    stay strong.

    cheers
    Chasam

  • Yes , your OH it seems has been generally fortunate with advice and treatments etc although I know It has still been v challenging! Thank you again. Surgery and the chemo/rad routes both carry a high risk of disease returning....I just DK...have the surgery and all it entails with only a 35% cure rate , only to be potentially told at my next check up , it has returned....Just wish NHS would lay out clearly info about ED , penis shortening , etc before decisions are made!

    Thanks again!

  • Thanks Chasam again...I was told 'nerve sparing or not we advise all patients to seek advice re viagra etc....'

    Feel like I am back at sq 1...hah! Exhausting....thanks again!

  • I can only say that for us at least the viagra does work adequately. In our case it's needed as far as I can tell because decades of strong epilepsy meds have shrunk all the veins in his body. Hope you can get through the surgery to find out if viagra does work for you. If the nerve sparing works too so much the better no doubt. 

  • I haven’t found that since RC.. ask for the nerve sparing procedure and hopefully that may do the trick albeit you may need some medicinal encouragement ..As for reduced length-not noticed much difference ..

  • Thanks Ivan-appreciated...:)

  • In sept 2019 I had radical cystectomy and prostectomy with orthotopic neobladder reconstruction. It was planned to do nerve sparing prostate surgery but on the morning of the operation it was changed to full prostectomy. Covid got in the way so it was 9 months later that the cancer was found to have metastasised. 

    The prostectomy has resulted in penis shortening which was not mentioned until after the operation. I knew ED would be the outcome of prostate removal. 

    Eventually I attended an ED clinic and have used Alprostadl injections to produce an erection. Viagra does not work because there are no nerves left. 

    If a man’s penis is not occasionally suffused with blood, the reason for night time errctions, then pennile atrophy will take place. This has happened to me. 

    i am now on immunotherapy and there is no evidence of cancer  I have fortnightly infusions. 

    My Neobladder works well. 

    Today I had check up Cystoscopy. I have phimosis of the foreskin(unable to retract it). This may be lack of erections or the immunotherapy. Either way I now need circumcising. 

    my advice is to discuss leaving prostate. Prostate cancer is slow growing and very treatable and you would maintain your sexual function. ED injections work but kill any spontaneity and even though your erection subsides it takes a couple of hours for general discomfort to disappear. 

    I had my operation at Southend hospital with Mr Motiwala.  the operation after mine the patient opted to keep his prostate and treat any effects  I wish I had done the same  

  • They should tell men what the ED clinic, who were absolutely super in Sheffield, told us. Ie what Hornblower has said about needing to keep the blood vessels expanded frequently enough to combat atrophy. This can be achieved with the NHS supplied vacuum device which works well. An appointment is booked with a male technician from the vacuum device supply company, who assists with a trial to demonstrate that it works and how to use it. A pack is then supplied with all the kit. It is fair to say that it served to reverse a moderate degree of atrophy, [happened during all the bc treatment] since when, as he has not had to have cystectomy or prostectomy the viagra has been sufficient.