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PSA Test Good But ED Problem

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User
Posted 17 Aug 2020 at 19:20

I have just had my second PSA result and same as first 3 months ago, 0.1 which I am really pleased about. I am also practically dry as well and only use a pad for reassurance e ery now and then. However, I am due to see consultant this Thursday for a routine consultation and am slightly concerned regarding ED. Tadalafil didn't agree with me so was prescribed 25mg daily of Sildenafil and 100mg when I want to up the game! Unfortunately this is not working and although I do get a slight tingling in the penis area I certainly don't get an erection. It's 5 months since I had the operation and I do understand that it could take a lot longer before and if anything may happen. Any suggestions would be appreciated. Do I continue on Sildenafil or am I wasting my time, should I ask the consultant for injections or is there anything else I could consider asking him to improve my practically non existent performance? 

User
Posted 19 Aug 2020 at 09:11

If you buy a pump yourself, ask for a VAT exemption form first.
You are buying it as a medical appliance (zero rated), not a sex toy (20% rated).

If you obtain through iMEDicare (self purchase or prescription), they will provide you with the free training you would have received at a pump clinic. This training is really important - it doubles the chances of using the pump successfully at home afterwards. At the moment, this is done over a video call, due to COVID.

User
Posted 18 Aug 2020 at 11:44
Pump good, Viagra / Cialis good (if they work), Injections are dynamite! My surgeon put me on them 12 months after surgery because I needed a guarantee as I was in a new relationship scenario. 5years on I no longer need any of them.

The big change for me was forgetting about "performance" you will be different and you need to make the most of what you have. Thinking in terms of performance will guarantee failure.

Focus on what your partner wants, you might be surprised! If nothing at all happens when everyone is turned on OR he /she just wants a cock then go for the injections.

User
Posted 18 Aug 2020 at 19:19
Definitely want a pump. I had my RARP probably around the same time as you (mine 9 March), but I'm several years older. Luckily I don't have much of a reaction to Tadalafil, but it certainly wasn't doing enough to get an erection (I only had nerve-sparing on right hand side, so I'm not overly surprised at there being a problem). I started on a pump around 2 weeks ago and it very definitely helps. Shame they are no longer on the NHS.

My youngest brother, who is your age, has ED for different reasons. He tried the injection, but was in agony for hours afterwards, which has rather put me off (or put me off even more would probably be accurate - I'm happy to stick a needle in most places, but I'm not sure about old todger!).

User
Posted 17 Aug 2020 at 20:16
You should have a vacuum pump by now - it is a bit early for resorting to injections though and there still seem to be stock issues in many parts of the country.

Clarify with the surgeon

- whether there is an ED clinic or andrology service in your area and if so, who is responsible for referring you.

- if not, is all ED treatment in the hands of your surgeon or your GP?

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

User
Posted 17 Aug 2020 at 20:18
Tadalafil is by far the gold standard at 5mg per day. You can take it at night which lessens the side effects. But it does keep blood flowing and help keep him healthy. You desperately need to get a pump and use daily to maintain size and shape or it will waste away ok. In honesty only the 2 % get results at your stage. I’m nearly 100% now at 5 yrs but it took 2 yrs to achieve that , and just when my ED is fixed I now have spread and am incurable. Such luck heh. I’m no expert but as near as you’ll get haha. Get back on tadalafil , pump daily and use rings for penetration if you want. Ask for injections also but don’t use with tadalafil or pump. Just try try try everything or you won’t get it back. And dint stop moaning at them as once they’ve done the surgery it seems they don’t give a s**t mostly. Work your own recovery
User
Posted 17 Aug 2020 at 20:38

Hi Andy, 

Great news on your PSA result and continence success. 

As far as ED goes, I found it easy to get disheartened, especially when reading that some guys recover really quickly in this department.. but in my case it's taken a frustratingly long time (or so it seems to me anyway). I am now over 9 months post RALP and have only in the last month or so have I had any significant improvement. I cut my 20mg tadalafil and take 10mg alternate days. I'm using a pump(internet purchase) for physio as recommended by other people on here (especially Chris). I also tried sildenafil a couple of months ago but I was disappointed (probably too early and my high expectations so I'm ready for another go).

What I would say is keep trying and keep the intimacy going. I found noticeable improvements to be a huge boost to my confidence and wellbeing. As others have said (Chris and Lyn have written great threads on this).. it really does take time, so don't give up. 

Good luck. 

Kev.

Edited by member 17 Aug 2020 at 20:40  | Reason: Not specified

User
Posted 18 Aug 2020 at 02:09

Originally Posted by: Online Community Member
Tadalafil didn't agree with me

What side effect did you get?

There is a 2.5mg tablet which is for cases where 5mg gives unacceptable side effects.

User
Posted 18 Aug 2020 at 11:41

Andy EV. I am 15months post op with 50% nerve sparing. Still not a proper erection but improving all the time.

Now with 5mg Tad & 50mg Sildenafil for events. Pump use essential I think

User
Posted 18 Aug 2020 at 20:36
The needle in the todger is easy when you have something worth looking forward to. Caverject and Viridal use the drug Alprostadil. I too felt like he’d been slammed in a car door afterwards and not that great an erection. But Invicorp 25 can be a game changer. Different drugs but amazing wood and no after effects
User
Posted 18 Aug 2020 at 20:37

I didn’t get on well with 5mg tadalafil so snapped the pill in half and it was fine daily. I get a good erection without these days if I’m not tired but the 2.5mg tadalafil brings back strong erections from a few years back. 

Hope you make some progress but as others have indicated can take years to make a full recovery. Key it to promote blood flow in that area.

TG

User
Posted 19 Aug 2020 at 00:35

Originally Posted by: Online Community Member

I think a pump is essential based on comments and will discuss with consultant re medication change etc. I agree that this has a psychological effect as well as physical so may consider some form of ED clinic etc

I think you have misunderstood - in many areas of the country, the only way you can get a pump or pellets / injections is by attending the ED clinic; GPs can't prescribe them without a prescribing nurse or specialist's written request and the urologists don't have a budget for it. 

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

User
Posted 19 Aug 2020 at 07:22

Defo worth pinging the ED clinic although not sure how they will be operating in COVID times.

Probably easier if there is a significant delay to pick one up for ~£200 Chat to your doctor first as I seem to remember reading there is time not to use these after RARP.

SOMACorrect xtra appears popular as scoped it out pre-surgery just to cover all bases.

Some of the guys on here spoke positively about it and perhaps will be able to give ‘field review feedback’?

TG

User
Posted 19 Aug 2020 at 07:24
You can just buy them online. Getting it on prescription just saves money.
User
Posted 19 Aug 2020 at 11:34
You have applied for your prescription fee exemption certificate, haven't you?

Makes / models approved for NHS prescription include:-

Osbon Erecaid Esteem

SomaErect

Farnhurst Elite

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

User
Posted 19 Aug 2020 at 16:42

I got my pump for free through the continence clinic which was part of the follow up. Had a consult with someone from the supplier company on usage and then it was basically "onward my son and lube" :)

Make sure you use it! Through low level depression I let it slide and I am having an uphill battle getting going again.

You can get prescription exemption through your GPs but may have to fight. Mine were total d*cks pretending they dod not have the forms (I suspect they did not want it coming out of their budget) so my lovely onco nurses at the hospital sorted it.

Edited by member 19 Aug 2020 at 16:46  | Reason: Not specified

User
Posted 19 Aug 2020 at 18:05

"without support while standing"

For the proper medical one I guess one could tie some string around ones neck and loop it to the inflated pump and wander around with that attached - just don't walk into any walls :) :) :)

 

On a serious note I have lymphodema around my bits so I get stuff sucked inside the pump quite often. It jeffing hurts!

Edited by member 19 Aug 2020 at 18:06  | Reason: Not specified

User
Posted 26 Aug 2020 at 22:10

Hi Andy.

See my profile.  Top of list would be pump as an absolute minimum.

So you have had no erection at all for nearly 6 months ?

See this copy / paste. Ie link.

We never got to injection stage, although discussed with wife.

I never found PDE5 any use.  ....Patience Persistance and Pump

Slow slow progress, 3 yrs for us , now 5 yrs post op. as I supposively had non nerve sparing.  

Regards Gordon

Posted: 04 Aug 2020 at 20:46

 

Hi Gilly


As Andy states.  Plenty of support if needed.   I assume he has read https://community.prostatecanceruk.org/posts/t10993-Erecting-the-Erection---Medication


Folk on here  really need more information to advise I feel.


From your posts your partner had ED pre op.


How have you helped with penile rehabilitation ?  Use of  pump etc


Regards

Show Most Thanked Posts
User
Posted 17 Aug 2020 at 20:16
You should have a vacuum pump by now - it is a bit early for resorting to injections though and there still seem to be stock issues in many parts of the country.

Clarify with the surgeon

- whether there is an ED clinic or andrology service in your area and if so, who is responsible for referring you.

- if not, is all ED treatment in the hands of your surgeon or your GP?

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

User
Posted 17 Aug 2020 at 20:18
Tadalafil is by far the gold standard at 5mg per day. You can take it at night which lessens the side effects. But it does keep blood flowing and help keep him healthy. You desperately need to get a pump and use daily to maintain size and shape or it will waste away ok. In honesty only the 2 % get results at your stage. I’m nearly 100% now at 5 yrs but it took 2 yrs to achieve that , and just when my ED is fixed I now have spread and am incurable. Such luck heh. I’m no expert but as near as you’ll get haha. Get back on tadalafil , pump daily and use rings for penetration if you want. Ask for injections also but don’t use with tadalafil or pump. Just try try try everything or you won’t get it back. And dint stop moaning at them as once they’ve done the surgery it seems they don’t give a s**t mostly. Work your own recovery
User
Posted 17 Aug 2020 at 20:34

Thanks. There has been no mention of pump previously. Are they standard or is there a recommendation. I will ask consultant about Ed clinic and I may try the tadalafil again if its gold standard. 

User
Posted 17 Aug 2020 at 20:38

Hi Andy, 

Great news on your PSA result and continence success. 

As far as ED goes, I found it easy to get disheartened, especially when reading that some guys recover really quickly in this department.. but in my case it's taken a frustratingly long time (or so it seems to me anyway). I am now over 9 months post RALP and have only in the last month or so have I had any significant improvement. I cut my 20mg tadalafil and take 10mg alternate days. I'm using a pump(internet purchase) for physio as recommended by other people on here (especially Chris). I also tried sildenafil a couple of months ago but I was disappointed (probably too early and my high expectations so I'm ready for another go).

What I would say is keep trying and keep the intimacy going. I found noticeable improvements to be a huge boost to my confidence and wellbeing. As others have said (Chris and Lyn have written great threads on this).. it really does take time, so don't give up. 

Good luck. 

Kev.

Edited by member 17 Aug 2020 at 20:40  | Reason: Not specified

User
Posted 18 Aug 2020 at 02:09

Originally Posted by: Online Community Member
Tadalafil didn't agree with me

What side effect did you get?

There is a 2.5mg tablet which is for cases where 5mg gives unacceptable side effects.

User
Posted 18 Aug 2020 at 06:38
I had uncomfortable aching pain in testicle. Stopped using them for a while and pain went, started again and it came back. May give it another go with 2.5 thanks
User
Posted 18 Aug 2020 at 11:13

Hi can I ask what side effects you had from the Taladafil.

Carl

User
Posted 18 Aug 2020 at 11:41

Andy EV. I am 15months post op with 50% nerve sparing. Still not a proper erection but improving all the time.

Now with 5mg Tad & 50mg Sildenafil for events. Pump use essential I think

User
Posted 18 Aug 2020 at 11:44
Pump good, Viagra / Cialis good (if they work), Injections are dynamite! My surgeon put me on them 12 months after surgery because I needed a guarantee as I was in a new relationship scenario. 5years on I no longer need any of them.

The big change for me was forgetting about "performance" you will be different and you need to make the most of what you have. Thinking in terms of performance will guarantee failure.

Focus on what your partner wants, you might be surprised! If nothing at all happens when everyone is turned on OR he /she just wants a cock then go for the injections.

User
Posted 18 Aug 2020 at 13:59

Carlos, I had aching in testicle area, like a dull ache which was driving me mad. Hence I came off them. 

User
Posted 18 Aug 2020 at 14:05

I think a pump is essential based on comments and will discuss with consultant re medication change etc. I agree that this has a psychological effect as well as physical so may consider some form of ED clinic etc

User
Posted 18 Aug 2020 at 19:19
Definitely want a pump. I had my RARP probably around the same time as you (mine 9 March), but I'm several years older. Luckily I don't have much of a reaction to Tadalafil, but it certainly wasn't doing enough to get an erection (I only had nerve-sparing on right hand side, so I'm not overly surprised at there being a problem). I started on a pump around 2 weeks ago and it very definitely helps. Shame they are no longer on the NHS.

My youngest brother, who is your age, has ED for different reasons. He tried the injection, but was in agony for hours afterwards, which has rather put me off (or put me off even more would probably be accurate - I'm happy to stick a needle in most places, but I'm not sure about old todger!).

User
Posted 18 Aug 2020 at 20:36
The needle in the todger is easy when you have something worth looking forward to. Caverject and Viridal use the drug Alprostadil. I too felt like he’d been slammed in a car door afterwards and not that great an erection. But Invicorp 25 can be a game changer. Different drugs but amazing wood and no after effects
User
Posted 18 Aug 2020 at 20:37

I didn’t get on well with 5mg tadalafil so snapped the pill in half and it was fine daily. I get a good erection without these days if I’m not tired but the 2.5mg tadalafil brings back strong erections from a few years back. 

Hope you make some progress but as others have indicated can take years to make a full recovery. Key it to promote blood flow in that area.

TG

User
Posted 19 Aug 2020 at 00:35

Originally Posted by: Online Community Member

I think a pump is essential based on comments and will discuss with consultant re medication change etc. I agree that this has a psychological effect as well as physical so may consider some form of ED clinic etc

I think you have misunderstood - in many areas of the country, the only way you can get a pump or pellets / injections is by attending the ED clinic; GPs can't prescribe them without a prescribing nurse or specialist's written request and the urologists don't have a budget for it. 

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

User
Posted 19 Aug 2020 at 00:37

Originally Posted by: Online Community Member
I started on a pump around 2 weeks ago and it very definitely helps. Shame they are no longer on the NHS.

 

They are still available on the NHS; perhaps just your CCG that has decided not to prescribe them? 

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

User
Posted 19 Aug 2020 at 06:52

I have misunderstood. I thought you could just buy them online. Didn't realise they were prescribed. 

User
Posted 19 Aug 2020 at 07:22

Defo worth pinging the ED clinic although not sure how they will be operating in COVID times.

Probably easier if there is a significant delay to pick one up for ~£200 Chat to your doctor first as I seem to remember reading there is time not to use these after RARP.

SOMACorrect xtra appears popular as scoped it out pre-surgery just to cover all bases.

Some of the guys on here spoke positively about it and perhaps will be able to give ‘field review feedback’?

TG

User
Posted 19 Aug 2020 at 07:24
You can just buy them online. Getting it on prescription just saves money.
User
Posted 19 Aug 2020 at 07:44

Thank goodness for this forum! Your all so helpful. Thank you

User
Posted 19 Aug 2020 at 09:11

If you buy a pump yourself, ask for a VAT exemption form first.
You are buying it as a medical appliance (zero rated), not a sex toy (20% rated).

If you obtain through iMEDicare (self purchase or prescription), they will provide you with the free training you would have received at a pump clinic. This training is really important - it doubles the chances of using the pump successfully at home afterwards. At the moment, this is done over a video call, due to COVID.

User
Posted 19 Aug 2020 at 11:34
You have applied for your prescription fee exemption certificate, haven't you?

Makes / models approved for NHS prescription include:-

Osbon Erecaid Esteem

SomaErect

Farnhurst Elite

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

User
Posted 19 Aug 2020 at 11:45

Thanks Lyn. I live in Wales so prescriptions are currently free here. Whether that applies for an expensive pump I'm not sure but will check. 

User
Posted 19 Aug 2020 at 12:16

Originally Posted by: Online Community Member

Thanks Lyn. I live in Wales so prescriptions are currently free here. Whether that applies for an expensive pump I'm not sure but will check. 

 

Doesn't everyone with a cancer diagnosis in the UK get free prescriptions for five years?
(It's likely more a question of whether or not you can get someone to write you one out of their budget)

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 19 Aug 2020 at 15:40

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

Thanks Lyn. I live in Wales so prescriptions are currently free here. Whether that applies for an expensive pump I'm not sure but will check. 

 

Doesn't everyone with a cancer diagnosis in the UK get free prescriptions for five years?
(It's likely more a question of whether or not you can get someone to write you one out of their budget)

 

Yes,  but you have to apply for an exemption certificate first. 

It isn't quite that straightforward; anyone being treated for cancer or who needs treatment for the side effects of cancer treatment is entitled to apply. So men who opt for active surveillance don't always get it :-( Once the 5 years is up, you can only reapply if you a) are still being treated or b) are still being treated for the side effects. Fortunately, ED solutions count as ongoing treatment. 

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

User
Posted 19 Aug 2020 at 16:25

If you haven't got your exemption yet, when you pay for your prescription meds, ask for an FP57 receipt (a till receipt won't do).

Then when you get your exemption card, take it with your FP57's into any NHS pharmacy, and they'll repay your prescription charges.

User
Posted 19 Aug 2020 at 16:42

I got my pump for free through the continence clinic which was part of the follow up. Had a consult with someone from the supplier company on usage and then it was basically "onward my son and lube" :)

Make sure you use it! Through low level depression I let it slide and I am having an uphill battle getting going again.

You can get prescription exemption through your GPs but may have to fight. Mine were total d*cks pretending they dod not have the forms (I suspect they did not want it coming out of their budget) so my lovely onco nurses at the hospital sorted it.

Edited by member 19 Aug 2020 at 16:46  | Reason: Not specified

User
Posted 19 Aug 2020 at 17:43

Andy
Before I was able to get a prescription pump I got one from love honey and then one from Amazon. They came with a squeezy ball type pump which soon failed. So then I got a seperate trigger type pump part only, as an accessory, different inserts/seals and rings are also available seperately. The advantage with the prescription pumps is they come with a cone to help put the ring on. The advantage with the cheapies is they are lighter and I can use it without support while standing, the seal/vacuum can support the weight of the pump, so shaving showering etc. It just needs a good seal (trim close or shave). I have found I can, with the cheapy, after a couple of inflations remove the seal/comfort insert and put a ring on the pump and then once erect carefully slip the ring off the pump and onto the penis. Slightly more difficult but possible is to do a couple of inflations then put a ring on the penis and squeeze it all into the pump and still get a seal. Then pump it up with the ring already on.
One thing to be careful of with using the pump without the seal is not to suck in the skin and nerves near the base. If you see a bulge at the base when pumping release the vacuum and gently pull some skin away from the edge of the pump and try again.
If I had to choose between the Somarect and the cheapy it would be the cheapy every time. The only other advantage really is you get an excellent selection of rings with the Somarect, but you can buy them seperately anyway.

Good luck

Cheers
Bill

Edited by member 19 Aug 2020 at 18:04  | Reason: Not specified

User
Posted 19 Aug 2020 at 18:05

"without support while standing"

For the proper medical one I guess one could tie some string around ones neck and loop it to the inflated pump and wander around with that attached - just don't walk into any walls :) :) :)

 

On a serious note I have lymphodema around my bits so I get stuff sucked inside the pump quite often. It jeffing hurts!

Edited by member 19 Aug 2020 at 18:06  | Reason: Not specified

User
Posted 19 Aug 2020 at 18:31

Originally Posted by: Online Community Member

"without support while standing"

For the proper medical one I guess one could tie some string around ones neck and loop it to the inflated pump and wander around with that attached - just don't walk into any walls :) :) :)

 

😂😂😂🤣

It hangs on while standing and limited walking around, wouldn't advise going for a jog or anything like that.

Cheers

Bill

 

 

 

 

 

 

User
Posted 19 Aug 2020 at 20:36

Originally Posted by: Online Community Member

If you haven't got your exemption yet, when you pay for your prescription meds, ask for an FP57 receipt (a till receipt won't do).

Then when you get your exemption card, take it with your FP57's into any NHS pharmacy, and they'll repay your prescription charges.

GPs aren't responsible for holding stocks of these forms or issuing to patients. Pharmacies should all have a supply. 

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

User
Posted 26 Aug 2020 at 20:05

Ok I had appointment with consultant who is really pleased with the progress so far regarding dryness and PSA results. In terms of ED he suggests I stay away from a pump for the time being and has recommended I return to using Tadalafil 5mg 5 x weekly and 20mg 2 x weekly with sexual stimulation for next 3 months. He believes the previous intolerence was probably a red herring. If this doesn't work he suggests I go for intra-cavernosal injections. His view on pumps are "not very exciting and can be a cold experience for you and your partner". I asked  about the long term consequences if nerves/muscle are not exercised and the potential of no erections if I don't do anything right away (e.g. using pump). He said that out of the operations done by himself 80% will have erections even though it may take up to two years. He believes that using a pump will not necessarily make any difference to the muscle/nerve performance over time and by not using one will not affect the longer term outcome. I sense he is not against using a pump but just doesn't think I need one right now.

I am now slightly confused regarding the pump situation based on every ones positive views on here and wonder why he is preferring the tadalafil and if this fails straight onto the injections?

User
Posted 26 Aug 2020 at 21:04
Call me a cynic, but he is a surgeon rather than an ED specialist? If you like and trust him, stick with his advice for now but keep an open mind for the future. Did you ask about referral to an actual ED service?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Aug 2020 at 21:41

I did ask and he suggests if injections etc are needed it makes sense to refer to a local (to me) ED specialist via private insurance company. My consultant is in London and I live in Swansea so makes sense I guess. Other than that I will also speak to my GP regarding his view on any local ED services. Only one I can find locally is NHS sexual health clinic. 

User
Posted 26 Aug 2020 at 22:10

Hi Andy.

See my profile.  Top of list would be pump as an absolute minimum.

So you have had no erection at all for nearly 6 months ?

See this copy / paste. Ie link.

We never got to injection stage, although discussed with wife.

I never found PDE5 any use.  ....Patience Persistance and Pump

Slow slow progress, 3 yrs for us , now 5 yrs post op. as I supposively had non nerve sparing.  

Regards Gordon

Posted: 04 Aug 2020 at 20:46

 

Hi Gilly


As Andy states.  Plenty of support if needed.   I assume he has read https://community.prostatecanceruk.org/posts/t10993-Erecting-the-Erection---Medication


Folk on here  really need more information to advise I feel.


From your posts your partner had ED pre op.


How have you helped with penile rehabilitation ?  Use of  pump etc


Regards

 
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