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User
Posted 08 Apr 2022 at 18:53

Having had radical prostrate surgery 19 months ago. The surgeon stated that I would never achive an erection or have penatrative sex. Despite his remark I met with a further specialist who arrangeged for me to have a meeting with a specialist nurse who said that she would contact my GP to provide a pump and ask them to prescribe a drug wich may help with my erectile disfunction following surgey. While the pump was eventually provided the drugs were not. My GP seemed dubios when asked about the information from the nurse. I did inform the nurse that the drugs she had asked the GP to prescribe had never been issued. The GP did prescibe tadafil when I contacted him via Email, the drug was totally useless. I also used the pump regularly as instructed without and obvious improvements at all . . It wasnt something that I thought would ever bother me, after all I was alive and had survived prostrate cancer. However I had always perviously had a wonderful relationship with my wife and it is begining to really get me down. Is it now too late to ask for help ??

User
Posted 09 Apr 2022 at 08:22
That is awful treatment from the urologist.

I assume you have had non nerve sparing surgery? Were you offered radio therapy?

It's to late now regarding treatment choice but there are still options that may help you regain some function. Ask your GP about a referral for specialist help ,(clearly not to the same Urologist as before!).

The pump can be used for penetrative sex if it is designed for it and has the necessary constriction rings. You can also have injectables eg caverject or a surgical prostethis. There are lots of stories on this forum of the successful use of these.

User
Posted 09 Apr 2022 at 18:44
The injections don't need nerves to work. They are not guaranteed to work for every man but a high proportion are successful. Also, there are three different brands so one might work where another fails.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User
Posted 09 Apr 2022 at 08:22
That is awful treatment from the urologist.

I assume you have had non nerve sparing surgery? Were you offered radio therapy?

It's to late now regarding treatment choice but there are still options that may help you regain some function. Ask your GP about a referral for specialist help ,(clearly not to the same Urologist as before!).

The pump can be used for penetrative sex if it is designed for it and has the necessary constriction rings. You can also have injectables eg caverject or a surgical prostethis. There are lots of stories on this forum of the successful use of these.

User
Posted 09 Apr 2022 at 13:50

I really appreciate your replay and take on board all you have advised, thank you..

Im really reluctant to critises any of the medical staff. However I feel that while the support was there prior to surgery, the support afterwards was almost non exisistant. It relied on me pestering the hospital or GP which is a bit embarrasing really.

My GP spoke to me as if i had had a dose of the flu, and as the case at present, there was never even the opertunity to visit the surgery. Just a couple of arranged phone chats, where its almost impossible to be honest due to the way its done and thats it. I appreciate it was amid a COVID epedemic and hospitals were rushed off their feet. But I still have no idea if I couldve had nerve sparing surgery or not, that was never discussed. Maybe the robot used to operate on me is incapable of carrying out such procedures, ive no idea?, how would you know?. it would be interesting to know if any nerve sparing Proststrate surgery has ever been carried out in my local hospital. I am aware of another person such as myself in exactly the same position operated in the same Hospital who also feels that the system has let them down totally.

Ive got to say that given the oppertunity again I think I wouldve done anything rather than had the surgery. sad but true??.

User
Posted 09 Apr 2022 at 15:03

It seems that you were never given a decent explanation of your situation or the treatment options available to you. Nerve sparing surgery has been standard practice for over 20 years and is available at all hospitals that offer prostatectomy; if your nerves were removed it was because there was concern that your cancer was already at the edge of your prostate so saving the nerves would have risked some of the cancer being left behind.

If you have had all the nerve bundles removed, tablets like Viagra won't work, as you have already discovered. However, penetrative sex may still be possible if you learn to use the pump properly and you should also try the injections. No need to have difficult conversations with the GP at this point if you don't want to - get back in touch with the specialist nurse and ask for an appointment to discuss trying caverject or invicorp. This is your right under NHS guidelines.

In the meantime, the vacuum pump is really important for keeping your penis healthy ... if you haven't been using it much, time to start again and get into a routine of daily exercising with it.

Edited by member 09 Apr 2022 at 15:05  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Apr 2022 at 15:58

Hi LynnEyre, do the injections work if there was no or only partial nerve sparing? Or are they only alternatives either the pump or implants?  Thank you

User
Posted 09 Apr 2022 at 18:44
The injections don't need nerves to work. They are not guaranteed to work for every man but a high proportion are successful. Also, there are three different brands so one might work where another fails.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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