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18 months post op and another good psa result

User
Posted 17 Mar 2015 at 17:26

18 months post RP. had another undetectable result today. what a relief! still nerve racking going to each test.

having tests every 3 months due to ED  problems. Incontinence sorted out after about 2 months post op. 

viagra and cialis have not worked and i have experienced body aches with cialis and headaches with viagra. so now trying muse.

Overall i feel fine and working normally and in gym as much as i used to be pre-op.

Hope this helps anyone just diagnosed or going through treatment. i know of plenty of other success stories in my local support group so if you are in the early stages there is alot of hope and great results

 

User
Posted 17 Mar 2015 at 19:43

That's great news john250, good on you for getting on with life. I'm cycling a bit and am about ready for the gym again.

I also had my 5 month post op PSA result yesterday 0.1 so pretty happy about that as well.

Getting some medication for the incontinence, which is more trying to control frequency rather than leaks, I seem to have those under control, but needing to wee at least every hour/hour and a half every day, and three times during the night.

My GP has just stopped the Cialis which hasn't really worked neither did Viagra so I'm not sure what's next.

User
Posted 17 Mar 2015 at 21:15

John

Great news another milestone passed.

Alan

As others on here will tell you "use it or lose it" the pump is also an aid to recovery.

Trevor

Still early days and other options are available.

Thanks chris

 

User
Posted 17 Mar 2015 at 21:59
John

Congratulations on your excellent PSA results and thank you for sharing this.

Good luck with the muse!

Best wishes

Edited by member 17 Mar 2015 at 22:20  | Reason: Not specified

User
Posted 18 Mar 2015 at 00:29

Alan, without regular use of the pump you are reducing your chances of a proper recovery and regaining the previous size. Ideally, you should be using it 3 - 5 times per day to replicate the natural erections that you used to have during the day and night.

Trevor, I am really sad for you. Can you not get a referral to an ED nurse as your GP doesn't seem to understand the situation. At 5 months, it is far too early to say that something doesn't work and write it off. Plus the cycling won't be helping with nerve repair - unless you have bought a proper prostate friendly saddle? John is a keen cyclist but his surgeon banned it for 6 months post-op.

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

User
Posted 18 Mar 2015 at 07:27

Just don't ask for a referral to Alans ED nurse. He sounds a real help.

Bri

User
Posted 19 Mar 2015 at 17:45

3 - 5 times a day? I wish I had the time...

User
Posted 20 Mar 2015 at 08:45

 

 

Alan....With regard to ED  my consultant first suggested cialis , then Viagra and now i have been given Muse. If this does not work the next step will be a pump and then injections. 

Muse is a pellet you insert in your penis. Cant say i am looking forward to this but I will give it a go.

I have not used a pump as yet though i have heard some good reports about it. With regards to injections i really dont want to consider those.

I had 50% of nerves spared and i had ED problems before the op so I realise that this is an area that may never return to normal.But i am positive in that i am healthy and lead a normal life and glad it was caught early.

 

User
Posted 20 Mar 2015 at 10:00
Hi John,

I just wanted to say how pleased I was to hear of your good PSA test. That's good news we all want to hear.

All the Best,

Steve

User
Posted 20 Mar 2015 at 12:02

Nice to read your good news John250.

Have a great weekend.

dave

User
Posted 20 Mar 2015 at 18:57

I wonder if what Alan's ED nurse was trying to say was that because he has had non-nerve sparing surgery, there is no point trying Viagra or Cialis.

Alan, were you aware that the tablets won't work if you haven't got any nerves? It may be that the dreaded pump is your only option. Some men get along with it very well so it is certainly worth persisting.

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

User
Posted 20 Mar 2015 at 19:05

He sounded pretty clueless to me Lyn regarding his coments about nerve sparing

Bri

User
Posted 20 Mar 2015 at 19:20

I am fairly sure I met someone recently who had non-nerve sparing surgery but is achieving success in the EF department?

dave

User
Posted 20 Mar 2015 at 21:33

Physically it is almost impossible unless some nerves were left and able to repair themselves. On the basis that men with nerve bundles intact can find that the damage is irreparable, the few who find themselves with EF despite non nerve sparing are very fortunate indeed. We have one such person here but we have many more who will never get an erection without assistance even though their nerves are intact.

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

User
Posted 21 Mar 2015 at 00:07
Dave.

I am sure we spoke about my situation at Newark, even without any medication I get semi erections, with daily 100 mg Sildenafil I was getting 50 to 70 percent erections. I now tend to describe my self as " supposedly " non nerve sparing because my operation was described as "non nerve sparing" but my surgeon thinks that some nerves may have survived which he thinks explains the tumescence.

If you google something like " non nerve sparing ED" you will find various studies on ED after sparing and non nerve sparing surgery (NNS). A very small percentage of NNS men report getting erections either spontaneously or with the use of oral medication only.

Lyn's statement about not getting erections without nerves does make sense and the logical conclusion may be that despite the surgery being described as non nerve sparing, nerves may have survived.

Thanks Chris

User
Posted 21 Mar 2015 at 00:38

Hi Chrs,

LOL, yes we did speak, at length, but I did not want to mention you by name without your say-so.

Have a good weekend to you and your Good Lady.

dave

Edited by member 21 Mar 2015 at 09:03  | Reason: Not specified

User
Posted 21 Mar 2015 at 01:13

I didn't want to name Chris either so pleased that you outed yourself!

NHS stats say 20% of men with nerve sparing remain totally impotent 12 months post op, even with the use of tablets / injections / pellets. The chance of a man with non-nerve sparing getting natural erections is less than 3% and Viagra / Cialis cannot cause an erection, they only enhance it. The fact that Chris's surgeon is assuming some nerves were left behind supports the notion that generally, it ain't gonna happen without them.

Alan, don't pin all your hopes on a treatment that is unlikely to work - perhaps have another conversation with the ED nurse and ask him to explain to you what you can realistically hope for. My guess is that without the regular exercise of the pump, injections and pellets will not be very successful either - in those 7 months, there is likely to be some permanent damage to the spongy tissue of your penis and the longer you allow that to happen, the less healthy tissue there is to engorge.

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

 
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