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12 months post Op and still struggling with ED

User
Posted 25 Jul 2019 at 17:00

Hi all,

Hubby had nerve sparing Robotic prostatectomy on 12 July last year.  He recovered remarkable well as far as I am concerned.  Urinary effects now 100% resolved and PSA almost zero so total success.  However, his ED issues are starting to get him down now ... he seemed really upbeat until we passed the 12 month milestone last week, and now he is very disappointed and wondering if things will every be "normal" again.  At his last hospital specialist check up in March, he advised could be another 18 months or more before things totally return to a usable state.  He has a vac pump and uses that 2-3 times weekly for exercise even if we do not need it, if you know what I mean.  He has tried sildenafil (excuse spellings) and cialis ... which don't seem to do anything for him other than a headache the next morning, so went to GP yesterday to discuss other meds.  Not sure what she has prescribed as our local chemist do not stock so waiting on an order.  I tend to think he could make better use of the pump, with the rings provided but he feels his body should be making more of an effort itself and is getting fed up with using the pump to get even close to anything suitable for penetration ... I think its mind over matter and he is trying too hard.  We usually end up manually reaching orgasm which is fine by me, but he is missing the closeness of the full sexual act and its getting him really down and depressed now.  Can anyone give us any words of wisdom and advice on whether this will ever be a spontaneous act again ... I tend to think that if one or 2 of the meds options haven't done anything for him, they are all very similar, so we have to make the best of what we have and I will support him all the way, but I need to hear from others going through the same to give him hope ... thanks all xx

Edited by member 25 Jul 2019 at 17:07  | Reason: Not specified

User
Posted 25 Jul 2019 at 17:00

Hi all,

Hubby had nerve sparing Robotic prostatectomy on 12 July last year.  He recovered remarkable well as far as I am concerned.  Urinary effects now 100% resolved and PSA almost zero so total success.  However, his ED issues are starting to get him down now ... he seemed really upbeat until we passed the 12 month milestone last week, and now he is very disappointed and wondering if things will every be "normal" again.  At his last hospital specialist check up in March, he advised could be another 18 months or more before things totally return to a usable state.  He has a vac pump and uses that 2-3 times weekly for exercise even if we do not need it, if you know what I mean.  He has tried sildenafil (excuse spellings) and cialis ... which don't seem to do anything for him other than a headache the next morning, so went to GP yesterday to discuss other meds.  Not sure what she has prescribed as our local chemist do not stock so waiting on an order.  I tend to think he could make better use of the pump, with the rings provided but he feels his body should be making more of an effort itself and is getting fed up with using the pump to get even close to anything suitable for penetration ... I think its mind over matter and he is trying too hard.  We usually end up manually reaching orgasm which is fine by me, but he is missing the closeness of the full sexual act and its getting him really down and depressed now.  Can anyone give us any words of wisdom and advice on whether this will ever be a spontaneous act again ... I tend to think that if one or 2 of the meds options haven't done anything for him, they are all very similar, so we have to make the best of what we have and I will support him all the way, but I need to hear from others going through the same to give him hope ... thanks all xx

Edited by member 25 Jul 2019 at 17:07  | Reason: Not specified

User
Posted 25 Jul 2019 at 17:58
See the post ‘ erecting the erection-medication’ It’s brilliant. I’m 52 and 4 yrs post op. It took me nearly 2 1/2 yrs to get back to normal. Sadly I’m incurable now with massive psa. My advice is to fight for daily Tadalafil ( Cialis) 5mg , and keep using that pump as often as possible to keep him fit for when he reawakens. !! I’m superb now but 2” shorter despite pump use. There are also injections like Invicorp 25 which were amazing for me. I bought them privately but don’t mix drugs ok ! And then there are toys ok. I think we actually enjoyed sex more whilst I was recovering than we did prior if you get my jist!

If life gives you lemons , then make lemonade

User
Posted 25 Jul 2019 at 18:22

The event doses of the PDE5 inhibitors, Sildenafil (Viagra) and Tadalafil (Cialis), will only work if nerves are working. (The daily 5mg dose Tadalafil is still worth using even if nerves aren't working yet, as it helps preserve the penis for when they are, similarly to the vacuum pump.)

For when you are still waiting for nerves to recover, the options are vacuum pump with cock rings, or a vasodilator drug such as alprostadil, which is available in many formats - penis injection (e.g. caverject), urethral pellet (Muse), and a cream for urethral insertion or topical on the glans (Vitaros - not sure how available this is in the UK).

Vasodilators are only available under supervision of ED clinic as far as I know - there's a risk of them being too effective and causing permanent damage by generating an erection that lasts too long (4 hours) if too high a dose is used, so you start low and work up to the dose which works for you. They can cause a painful penis in some people, and can cause pain in a partner too in some cases (in which case a condom can be used).

 

User
Posted 05 Nov 2019 at 15:14

Originally Posted by: Online Community Member
I actually broke my SomaErect 2 Response the other weak after 4 entire years of faithful service. Cost me £64 to replace pump head. I decided to fund it privately this time as I know virtually everyone that works in our chemist and it’s embarrassing tbh. I bought mine from imedicare.com. Excellent service. Not cheap

No doubt you got your money’s worth out of it over those years. Was it shagged out? 😉

😂😂😂😂😂

Cheers, John.

User
Posted 08 Nov 2019 at 15:09
Mark

Like Chris says don't give up and keep pumping, atrophy is mostly irreversible.

I am over 2.5 years post op 50% nerve sparing, a long way off yet but the most recent improvements have been the most noticeable.

Good luck

Cheers

Bill

User
Posted 08 Nov 2019 at 20:53
I don’t think erectile dysfunction post op is less likely in men that had good pre-op function although obviously a man who already had ED is not going to see a dramatic improvement after RP. It all comes down to how much of the nerve bundles can be saved, how battered / burnt / bruised they are during the op and a bit of luck. Some men have total nerve sparing but the temporary damage basically leads the nerve bundles to pack up and retire permanently. Other men have significant nerve removal or major incidental damage and yet a small amount of nerve is able to regenerate. In more cases, the man regains physical ability to get an erection (sooner or later) but the emotional impact of diagnosis, cancer treatment, worries about the future, fear of failure and questioning what it all means for their sense of maleness cause ED.

In our house, we are in the third camp.

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

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User
Posted 25 Jul 2019 at 17:58
See the post ‘ erecting the erection-medication’ It’s brilliant. I’m 52 and 4 yrs post op. It took me nearly 2 1/2 yrs to get back to normal. Sadly I’m incurable now with massive psa. My advice is to fight for daily Tadalafil ( Cialis) 5mg , and keep using that pump as often as possible to keep him fit for when he reawakens. !! I’m superb now but 2” shorter despite pump use. There are also injections like Invicorp 25 which were amazing for me. I bought them privately but don’t mix drugs ok ! And then there are toys ok. I think we actually enjoyed sex more whilst I was recovering than we did prior if you get my jist!

If life gives you lemons , then make lemonade

User
Posted 25 Jul 2019 at 18:22

The event doses of the PDE5 inhibitors, Sildenafil (Viagra) and Tadalafil (Cialis), will only work if nerves are working. (The daily 5mg dose Tadalafil is still worth using even if nerves aren't working yet, as it helps preserve the penis for when they are, similarly to the vacuum pump.)

For when you are still waiting for nerves to recover, the options are vacuum pump with cock rings, or a vasodilator drug such as alprostadil, which is available in many formats - penis injection (e.g. caverject), urethral pellet (Muse), and a cream for urethral insertion or topical on the glans (Vitaros - not sure how available this is in the UK).

Vasodilators are only available under supervision of ED clinic as far as I know - there's a risk of them being too effective and causing permanent damage by generating an erection that lasts too long (4 hours) if too high a dose is used, so you start low and work up to the dose which works for you. They can cause a painful penis in some people, and can cause pain in a partner too in some cases (in which case a condom can be used).

 

User
Posted 25 Jul 2019 at 21:55
I love you Andy! Are you actually “data” off star-trek?? I think you are. Thanks for all your input !

If life gives you lemons , then make lemonade

User
Posted 25 Jul 2019 at 22:20

Hi Chris.  

you made me chuckle.

Took me 3yrs . non nerve sparing as you know. 

So to OP keep on exercising and kegels.  Don't ever give up.

Implant on NHS maybe the final option.

I remembered this ..

https://youtu.be/bHcN4Gm8tzM

😀

User
Posted 25 Jul 2019 at 23:54

Originally Posted by: Online Community Member
I love you Andy! Are you actually “data” off star-trek?? I think you are. Thanks for all your input !

Thanks. I wrote a long response, but moved it into my thread rather than drag Cornish Maid's thread well off-topic.

User
Posted 15 Aug 2019 at 16:05

I am 5 months post-op nerve sparing and have not even managed to raise a smile despite 3 different types of pill (2 of which make my face as red as a baboon’s arse). I bought what seems to be a rubbish pump but when I asked the GP he said pumps aren’t great as it is ‘cold venous blood’ as opposed to the warm arterial stuff. I have to admit when I managed to get the pump to do something there was nothing when the air was released! In my area apparently pumps are not available on the NHS.

I can still just about manage an orgasm but nothing else despite trying! Has anyone got any tips as the urologist seems amazed I am still unable to get any blood shifting in?

Thanks...

User
Posted 15 Aug 2019 at 16:24
How depressing on all three points - that the GP seems unaware of the importance of keeping oxygenated blood flowing to the area while you recover, that your surgeon is surprised (how naive) and that your CCG allegedly doesn't provide pumps ... who told you that, the GP?

GPs are not the specialists in this stuff, not are urological surgeons. Have you asked for a referral to the ED nurse or andrology clinic? Is there one in your Trust?

At only 5 months post-op, you would be very, very lucky to be getting any kind of response so possibly your expectations are too high. However, you perhaps either need to get a better technique with the crap pump or get hold of a better one to maintain your penile health while you wait for some natural recovery. How often are you using the pump? Are you getting a proper seal against your skin to create a vacuum? Do you get engorged when you are pumping? It doesn't matter that there was nothing when the air was released; a pump doesn't create an erection that then stays up by itself - you would need constriction rings for that.

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

User
Posted 15 Aug 2019 at 17:26

Thanks Lyn, yes my GP said that pumps are not provided on the NHS, so it is difficult to go beyond that discussion! The pump I have was a first attempt but was £40 so perhaps I was expecting something more effective - getting a good seal appears to be a problem but I think your suggestion of finding an ED clinic is a good one! Sadly all along (despite the excellent operation) I have felt a little cast adrift with no follow ups, but that’s the way of things for many men I think...

I will at least keep trying with one of the tablets and see if I can find a clinic in my area of Berkshire...

Thanks again for the reply :-)

User
Posted 15 Aug 2019 at 17:29
5 months out I had a small response but certainly nothing I could use.

I was treated through my urologist privately as the NHS nurses seemed overwhelmed and unresponsive, it was only after I paid 200 quid for a pump that I found you could get them on the NHS.

Injections and regular pumping were what cracked it for me, once it came back to life while diminished in speed and vigour it is perfectly usable, indeed my new wife says it's the best she has ever had - but she would say that wouldn't she! Oh and get yourself a cock ring it really helps!

User
Posted 15 Aug 2019 at 18:15

Thanks - can I ask where you get a decent pump from? I will try the NHS route but I suspect not for long as, around here, things take a long time and (as you say) everyone is super-busy...

Injections? Has anyone tried the pellets you can pop down the end? I did a month of clexane injections and have started to develop a healthy dislike of needles now :-(

User
Posted 15 Aug 2019 at 18:17

Not sure whether Berks has more than one NHS trsut but if not, I think you need a referral to this team - https://www.nhs.uk/Services/hospitals/Services/Service/Treatment/DefaultView.aspx?id=163064&spid=346046

and I don't think your GP can say no :-/

Here is a copy of the FOI request placed by PCUK in 2016 - as you have been told, Berkshire has a stance of not prescribing vacuum pumps or daily dose cialis which means that unless they have changed policy since 2016 your next step is probably going to be either the cream, pellet or injection
https://www.whatdotheyknow.com/request/erectile_dysfunction_service_pro_292?unfold=1#incoming-861806

 

Don't let the brass tards grind you down

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

User
Posted 15 Aug 2019 at 18:24
What you don't want is the kind with a rubber bulb for pumping - nowhere near strong enough and you risk getting repetitive strain injury 😬

I posted John's to a member here who lived in an area where they aren't prescribed. There is bound to be another member who has one hidden away unloved and unused in a cupboard somewhere?

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

User
Posted 15 Aug 2019 at 18:29

Thanks again - yes mine has a rubber bulb and I have a forearm like Popeye now! I will bin it as it is ineffective...so much for German engineering!

Thanks for the links etc - I will take a look and get some help :-)

User
Posted 15 Aug 2019 at 18:39
I actually broke my SomaErect 2 Response the other weak after 4 entire years of faithful service. Cost me £64 to replace pump head. I decided to fund it privately this time as I know virtually everyone that works in our chemist and it’s embarrassing tbh. I bought mine from imedicare.com. Excellent service. Not cheap

If life gives you lemons , then make lemonade

User
Posted 15 Aug 2019 at 19:23

Thanks Chris - I will take a look at the website and probably place an order!

 

User
Posted 19 Aug 2019 at 14:10
As Chris says you have to get the Somaerect I did get mine on the NHS after visiting an ED clinic they gave me a NHS prescription for the kit and if you can try 5mg daily Tadalafil as it is good to use with the pump .You will find the drug depending on your area is on a black list I have managed to get it free for nearly a year but now have to pay but the pump should be on NHS so dont be fobbed of by your Doctors ring the CCG first as I found them very helpful on what I could or could not have.Im not saying its a miricle cure I am 16 months down the line but the little chap does have his moments even if its rare but does seem to improving every one is different good luck .
User
Posted 13 Sep 2019 at 22:42

Tell your husband that he is lucky to have you. And to be carefull and appreciate the relationship he has.

User
Posted 05 Nov 2019 at 14:57

I was offered a pump at RBH (Reading) today (5/11/19) - so Berks is now okay to approach

User
Posted 05 Nov 2019 at 15:14

Originally Posted by: Online Community Member
I actually broke my SomaErect 2 Response the other weak after 4 entire years of faithful service. Cost me £64 to replace pump head. I decided to fund it privately this time as I know virtually everyone that works in our chemist and it’s embarrassing tbh. I bought mine from imedicare.com. Excellent service. Not cheap

No doubt you got your money’s worth out of it over those years. Was it shagged out? 😉

😂😂😂😂😂

Cheers, John.

User
Posted 08 Nov 2019 at 11:00

I bought the expensive pump due to the reluctance of my GP. It works great at getting the thing up but it then immediately collapses on release of the pressure. Tried adding the rings that come with it but that seems to remove sensation (probably due to strangulation!!) and it all seems a bit mechanical and removes much of the desire. My Prof seems bemused that 6 months after nerve-sparing surgery I still have no response to any chemicals outside a bad headache but it seems on here most people are lucky if they get a response within that timeframe.

Just seems that I have seen no change since the op at all - so what is the mechanism that suddenly makes it all spring into action if the nerves are spared (is my question!)?

M

User
Posted 08 Nov 2019 at 11:08
Mark , constant use of the pump to keep him healthy. Yeh not great for sex but does the job in the meantime. At your stage I was trying everything and getting very despondent. I used injections before I fought to get daily Cialis which was and still is my savior completely. The caverject only half worked and pain like i never knew afterwards. I bought Invicorp injections privately and they were amazing. I’m not sure what your situation is but for tablets to work , you really need a positive partner with stimulation etc. I still can’t really masturbate unless I use the pump , but with my wife everything is A1.

Takes time mate. Don’t give up and try everything. Remember not to mix drugs and get GP advice before trying stuff.

If life gives you lemons , then make lemonade

User
Posted 08 Nov 2019 at 12:13

Thanks Chris - really appreciate once again the reply! Sometimes I think half the battle is in the sharing! interesting you had such a different response to the different injections...I was thinking of trying one or maybe the suppository?!?

Cialis gives me a bad headache or I would be fine to take it...unfortunately!

 

M

User
Posted 08 Nov 2019 at 12:19
Ok so with low dose 5mg daily Cialis there are very little side effects if taken at night. Started working in a week. I funded myself initially to trial it and bought cheap online. Alprosatadil is the drug that can be injected ( Caverject ) or put in the penis urethra ( Muse pellets or Vitaros cream ). Sort of worked but not for me. Invicorp is a different injection which has worked on 77% of people where all else has failed. I bought that privately too but was around £25 per pop

If life gives you lemons , then make lemonade

User
Posted 08 Nov 2019 at 13:25

Ah ok - so 5mg at night - that could be a plan! I will talk to GP and maybe give that a go as the full dose is where I get the problems! thanks Chris :-)

User
Posted 08 Nov 2019 at 15:09
Mark

Like Chris says don't give up and keep pumping, atrophy is mostly irreversible.

I am over 2.5 years post op 50% nerve sparing, a long way off yet but the most recent improvements have been the most noticeable.

Good luck

Cheers

Bill

User
Posted 08 Nov 2019 at 18:45

Are all these pumps manual? Any more automated or connected options out there? It’s a journey I suspect I will be on post op.

User
Posted 08 Nov 2019 at 19:29
You can get automated /battery ones but simply no need !! Only takes a few pumps tbh. Try to get a one handed one like the somaerect or you are messing around with tubes and both hands which is awkward

If life gives you lemons , then make lemonade

User
Posted 08 Nov 2019 at 19:36

Cool thanks for the heads up. Not the best term I guess. I would imagine it’s kinda like going the the gym. Just about increasing blood flow and exercising muscles to train it. Blood flow key to repair etc. I am 52 and still have good function pre op without any symptoms of ED. Apparently function pre assuming nerve sparing is possible is related to post op outcome?

User
Posted 08 Nov 2019 at 20:53
I don’t think erectile dysfunction post op is less likely in men that had good pre-op function although obviously a man who already had ED is not going to see a dramatic improvement after RP. It all comes down to how much of the nerve bundles can be saved, how battered / burnt / bruised they are during the op and a bit of luck. Some men have total nerve sparing but the temporary damage basically leads the nerve bundles to pack up and retire permanently. Other men have significant nerve removal or major incidental damage and yet a small amount of nerve is able to regenerate. In more cases, the man regains physical ability to get an erection (sooner or later) but the emotional impact of diagnosis, cancer treatment, worries about the future, fear of failure and questioning what it all means for their sense of maleness cause ED.

In our house, we are in the third camp.

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

User
Posted 08 Nov 2019 at 21:02

Hey Lyn

Yes, that makes a lot of sense. So many factors involved along with our old nemesis psychosomatic influences. Experiences a minor amount of this in terms of inflammation and bruising post TPM biopsy. 

I hope things progress positively in your house. It’s one hell on a journey for sure. Spoken to two close friends tonight and both around my age and just starting the journey having had elevated PSA so moving the mpMRI.

 
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