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Ordering a pump

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User
Posted 15 Feb 2022 at 12:04

Hi All. 

after coming back from my incontinence physio session, have been advised by the woman that at week 12 after my RALP, which is I know 9 weeks away but wanted to be ready that I can start using a pump. 

She said that the NHS no longer prescribe them but she wasn’t sure. Has anyone recently had experience of this? 

So if I do have to purchase one, is there a list of NHS recommended ones that I could look up? 

User
Posted 20 Apr 2022 at 13:31

If you do end up having to buy one yourself - like i did. Make sure you get it VAT free. As a cancer patient you are VAT exempt - One small bonus is suppose !!

User
Posted 20 Jun 2022 at 14:42

Originally Posted by: Online Community Member
Soma-erect Response - NHS code 15019

The SomaErect Response II accounts for 80% of NHS prescriptions.

With the SomaERect Response II, if you intend to use it for sex (rather than just rehab), you should also order:
3 spare Surefit constriction rings - NHS code 15222

It only comes with 1, and you may need 2 to work. They have a life of about 40 uses.

The 3 spares are by default a small, a medium, and a large (and the pump comes with one medium). If you know what size you need, you can intercept the prescription and ask the pharmacy to note all 3 should be a specific size, but there's no separate order numbers for these - it's passed as a note to iMEDicare with the order.

I would strongly suggest you get booked on a pump clinic session too (usually an off-shoot of the ED clinic, but probably much shorter waiting list), where they show you how to use it. This doubles the chances of using it successfully at home afterwards.

Edited by member 20 Jun 2022 at 14:58  | Reason: Not specified

User
Posted 15 Feb 2022 at 12:04

Hi All. 

after coming back from my incontinence physio session, have been advised by the woman that at week 12 after my RALP, which is I know 9 weeks away but wanted to be ready that I can start using a pump. 

She said that the NHS no longer prescribe them but she wasn’t sure. Has anyone recently had experience of this? 

So if I do have to purchase one, is there a list of NHS recommended ones that I could look up? 

User
Posted 15 Feb 2022 at 12:12

Hi Steve,

We just recently got one on the NHS. Our consultant emailed our GP surgery and the prescription was sent to the pharmacy. Think we waited for about 10 days for it to arrive. 

Good luck

Elaine

User
Posted 15 Feb 2022 at 13:16
Steve, below is a post I made in September 2021. Sadly, some CCGs / NHS trusts have decided not to allow pumps on NHS prescription in their area and if that applies where you live, it is really hard to challenge but some surgeons and GPs ignore their CCG! Also, there are some CCGs who do not allow NHS pump prescription if the patient had their op privately - that is the situation where we live.

********************************************************************************************************************

Posted 06 Sep 2021 at 13:06

Different ED nurses / urologists / andrology clinics / NHS trusts have different preferences but the ones that seem to be most commonly prescribed on the NHS are:

Farnhurst Elite - NHS code ES101

Soma-erect Response - NHS code 15019

Osbon Erec-Aid Esteem - NHS code XX-50

If you do have to purchase one yourself, these range from Β£200-Β£350 so a simpler pump from a website like LoveHoney is better than nothing.

********************************************************************************************************************

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

User
Posted 26 Mar 2022 at 16:39

Good to hear your continued progress. I had a 2.5 hour walk today, very pleasant in the sunshine, some leakage, there is slow improvement - but all in the right direction. Thanks for asking.

P. 

User
Posted 26 Mar 2022 at 17:15

Thanks Chris. Manual stimulation is happening every day now after my physio said I should be doing that for blood flow even if nothing happens and no erections. 

Think I should schedule some of my wife’s time in the day πŸ˜‰

 

Edited by member 26 Mar 2022 at 17:16  | Reason: Not specified

User
Posted 26 Mar 2022 at 17:35
The risk waiting until June Steve is that you could get to the appointment and discover that your nurse was quite correct and the pump isn't prescribed in your area.

I would ask the GP first, giving him / her the NHS order codes, and if s/he says no, just buy one.

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

User
Posted 26 Mar 2022 at 23:41
His nurse already told him they don't do pumps on the NHS in his area πŸ€·β€β™€οΈ
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Mar 2022 at 11:39

Yes you are correct Lyn. I will be ordering the soma one but have sent urologist nurse an email just to be doubly sure they don’t do one in my area on NHS. 

Fingers crossed! 🀞

User
Posted 27 Mar 2022 at 18:28

Originally Posted by: Online Community Member

Yes you are correct Lyn. I will be ordering the soma one but have sent urologist nurse an email just to be doubly sure they don’t do one in my area on NHS. 

Fingers crossed! 🀞

I'd mention to your doctor that there are lots of men you are in contact with via this site who have been prescribed them on the NHS and as a back up have a letter from your specialist nurse mentioning that you require one.

Zum

User
Posted 28 Mar 2022 at 16:13
End of June isn't too far away if your clinical team considers it to be the right time.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Apr 2022 at 14:53

Prostate Cancer UK produce a leaflet called "Treating erectile dysfunction after surgery for pelvic cancers", with the sub heading "A quick guide for health professionals: supporting men with erectile dysfunction".

For Tablets (PDE5-Is) (sildenafil, tadalafil, vardenafil and avanafil) it says "Early initiation (after catheter removal or within 14 days) promotes early recovery and preservation of erectile function".

For a Vacuum Erection Device (pump) it says:

  • Early use (within one month after surgery) linked with better outcomes.

  • Can be initiated 4-8 weeks after surgery.

I had nerve sparing RARP on 22nd March and was told I will have a follow-up consultation about 6-7 weeks after the operation. I intend to use that to have a discussion about penile rehabilitation, but am concerned that I may then have to wait months to speak to an ED specialist.

It's not difficult to imagine a scenario where I have my follow-up consultation 2 months after the operation and then have to wait 2-3 months for an appointment to get help with penile rehabilitation.

That would mean 4-5 months with no medical input regarding ED, which seems contrary to the advice that penile rehabilitation should begin at an early stage ("use it or lose it" keeps being quoted).

I was going  to purchase a relatively cheap pump and use that to maintain penile health, but Steve2812's post above (28th March) shows he was being told to wait 5 months after surgery before using a pump.

Like Steve I am confused. I get the feeling that in an ideal world rehabilitation would begin as soon as possible, but in the real world it is tied to whenever your appointment is and that can mean significant delay, which in turn can impair recovery.

User
Posted 25 May 2022 at 22:00

Originally Posted by: Online Community Member

If you do end up having to buy one yourself - like i did. Make sure you get it VAT free. As a cancer patient you are VAT exempt - One small bonus is suppose !!

can I ask what you bought? My hubby is 9 weeks post op. Have asked GP today. We will see but need a plan B.

User
Posted 26 May 2022 at 08:32

Just to jump in.  I bought a battery operated pump - PRIMUSmed Vacuum Erection Aid System (no relation to this company, just what I bought).  There is a UK website that sells them for £265.  I am just using it as an "exercise" tool and it does the job very well.   I find the automatic system is handy because you can use it while doing something else like reading or watching TV in bed.  So far not tried it for sex as I haven't mustered up enough courage to attach the rubber ring in case I need to call the fire brigade to cut it off :-)

My consultant advised to start as soon as the catheter came out, so I've been using it twice a day from week 3.

Hope that helps.  

User
Posted 20 Jun 2022 at 14:05
In many many cases the gold standard treatment is daily low dose Tadalafil 5mg if you can cope with it and side effects. Way better to have it daily than 20mg hits. A pump is an absolute must but your area may not provide one. If you want one for penetrative sex then you need a pro one like my soma erect response 2. If for exercise ( which is an absolute must ) then a simple love honey one will do. Whatever the outcome you deffo need a pump or he will not be useable later on !!!
User
Posted 21 Jun 2022 at 14:34
We’re still in discussion with GP, seems to be a post code lottery depending on area as to whether available on NHS.
User
Posted 21 Jun 2022 at 14:52

Yes Jayne it is a lottery I’m afraid! 

So after having a call with ED clinic this morning (I am under Medway area) I was given a full explanation of primary treatment and then secondary treatment. So was given lots of options which was - 

primary treatment - 

Tadalafil 20mg to be used once a week only and stopping taking daily 5mg Cialis on the day of trying the new tablet and not taking one the day after. 

secondary options were - 

Injections into my penis and the risks involved, the seed applicator up my penis (although nothing available to order) or the soma pump which is available on NHS in my area. 

however, I was advised that the best option would be tablets and on a 4 month trial and if it doesn’t work, I can then take the pump. 

So have decided to use the cheap love honey pump for penile health and then see how it goes for 4 months with tablets! 

Show Most Thanked Posts
User
Posted 15 Feb 2022 at 12:12

Hi Steve,

We just recently got one on the NHS. Our consultant emailed our GP surgery and the prescription was sent to the pharmacy. Think we waited for about 10 days for it to arrive. 

Good luck

Elaine

User
Posted 15 Feb 2022 at 12:20

Thank you Elaine! Will ask when I see the consultant in a few weeks time 

User
Posted 15 Feb 2022 at 13:16
Steve, below is a post I made in September 2021. Sadly, some CCGs / NHS trusts have decided not to allow pumps on NHS prescription in their area and if that applies where you live, it is really hard to challenge but some surgeons and GPs ignore their CCG! Also, there are some CCGs who do not allow NHS pump prescription if the patient had their op privately - that is the situation where we live.

********************************************************************************************************************

Posted 06 Sep 2021 at 13:06

Different ED nurses / urologists / andrology clinics / NHS trusts have different preferences but the ones that seem to be most commonly prescribed on the NHS are:

Farnhurst Elite - NHS code ES101

Soma-erect Response - NHS code 15019

Osbon Erec-Aid Esteem - NHS code XX-50

If you do have to purchase one yourself, these range from Β£200-Β£350 so a simpler pump from a website like LoveHoney is better than nothing.

********************************************************************************************************************

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

User
Posted 15 Feb 2022 at 13:19

Thanks Lyn! That is perfect. Will have a look in advance just in case 

User
Posted 26 Mar 2022 at 14:16

So the latest news is that being 9 weeks post RALP on Monday coming up, I have had a letter from urology and my ED clinic is booked…..for the end of June!! 

I was hoping to have the appt sooner and understand why they are backlogged due to covid etc but was told by PCUK specialist nurses that at 12 weeks, I should be able to start using a pump to help. 

I could order one online from LynEyre’s list she provided or should I just try one from LoveHoney for example in the meantime until the clinic appt? 

Is there any advantage to wait for the appt or should I just try? 

User
Posted 26 Mar 2022 at 16:21

Steve

I was advised it was a good idea to use one, so I acquired one from SomaErect. I have found it is making a difference with a daily whizz and doubly so with weekly 50mg Sildenafil. June seems a little far off - my oncologist was of the use it or lose it school.

P.

P.S. are you still dry now ?

User
Posted 26 Mar 2022 at 16:27

Thanks P

That is exactly what I think waiting till June! I will have shrivelled away by then πŸ˜‰I think I will order one for sure as I want to keep on top of recovery. 

Yes still dry thank goodness. Think 4-5 days dry now with one little lapse in between due to me doing too much. All ok with you? 

Steve

User
Posted 26 Mar 2022 at 16:39

Good to hear your continued progress. I had a 2.5 hour walk today, very pleasant in the sunshine, some leakage, there is slow improvement - but all in the right direction. Thanks for asking.

P. 

User
Posted 26 Mar 2022 at 17:05

Originally Posted by: Online Community Member

Thanks P

That is exactly what I think waiting till June! I will have shrivelled away by then πŸ˜‰I think I will order one for sure as I want to keep on top of recovery.

 

Steve

I had issues with a stricture so was slow to get into using the pump. I have lost very little in the length.

You can use some manual stimulation or get someone to lend a hand.πŸ˜€

Thanks Chris

User
Posted 26 Mar 2022 at 17:15

Thanks Chris. Manual stimulation is happening every day now after my physio said I should be doing that for blood flow even if nothing happens and no erections. 

Think I should schedule some of my wife’s time in the day πŸ˜‰

 

Edited by member 26 Mar 2022 at 17:16  | Reason: Not specified

User
Posted 26 Mar 2022 at 17:35
The risk waiting until June Steve is that you could get to the appointment and discover that your nurse was quite correct and the pump isn't prescribed in your area.

I would ask the GP first, giving him / her the NHS order codes, and if s/he says no, just buy one.

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

User
Posted 26 Mar 2022 at 18:03

Thanks Lyn. 

I will do that Monday morning and see what the GP says. I know the nurse told me 12 weeks is when I should start using one so this will give it time to get one as well

Steve 

User
Posted 26 Mar 2022 at 22:31

One of my specialist nurses sent me a letter to pass onto my GP saying that I need a pump (even mentioning SomaErect and giving the code). They sorted it straight away and it’s easy to use. Perhaps worth asking your nurses to do the same?

Zum

User
Posted 26 Mar 2022 at 23:41
His nurse already told him they don't do pumps on the NHS in his area πŸ€·β€β™€οΈ
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Mar 2022 at 11:39

Yes you are correct Lyn. I will be ordering the soma one but have sent urologist nurse an email just to be doubly sure they don’t do one in my area on NHS. 

Fingers crossed! 🀞

User
Posted 27 Mar 2022 at 13:18
Still worth asking GP before you pay .... s/he may not be aware of the local stance (if there is one)
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Mar 2022 at 18:28

Originally Posted by: Online Community Member

Yes you are correct Lyn. I will be ordering the soma one but have sent urologist nurse an email just to be doubly sure they don’t do one in my area on NHS. 

Fingers crossed! 🀞

I'd mention to your doctor that there are lots of men you are in contact with via this site who have been prescribed them on the NHS and as a back up have a letter from your specialist nurse mentioning that you require one.

Zum

User
Posted 28 Mar 2022 at 13:37

Well the plot thickens! 

After emailing my urologist support nurse regarding the pumps via NHS and to enquire whether I can get one (as I have been told that I can start using one at week 12 post op). 

I have almost been bollocked by urology and was told “Do Not buy one and wait till your end of June appointment. we need this time for you to recover and then assess you at clinic for the appropriate treatment for you” 

So confused and worried that end of June is too far away πŸ™„

 

User
Posted 28 Mar 2022 at 16:13
End of June isn't too far away if your clinical team considers it to be the right time.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Apr 2022 at 14:53

Prostate Cancer UK produce a leaflet called "Treating erectile dysfunction after surgery for pelvic cancers", with the sub heading "A quick guide for health professionals: supporting men with erectile dysfunction".

For Tablets (PDE5-Is) (sildenafil, tadalafil, vardenafil and avanafil) it says "Early initiation (after catheter removal or within 14 days) promotes early recovery and preservation of erectile function".

For a Vacuum Erection Device (pump) it says:

  • Early use (within one month after surgery) linked with better outcomes.

  • Can be initiated 4-8 weeks after surgery.

I had nerve sparing RARP on 22nd March and was told I will have a follow-up consultation about 6-7 weeks after the operation. I intend to use that to have a discussion about penile rehabilitation, but am concerned that I may then have to wait months to speak to an ED specialist.

It's not difficult to imagine a scenario where I have my follow-up consultation 2 months after the operation and then have to wait 2-3 months for an appointment to get help with penile rehabilitation.

That would mean 4-5 months with no medical input regarding ED, which seems contrary to the advice that penile rehabilitation should begin at an early stage ("use it or lose it" keeps being quoted).

I was going  to purchase a relatively cheap pump and use that to maintain penile health, but Steve2812's post above (28th March) shows he was being told to wait 5 months after surgery before using a pump.

Like Steve I am confused. I get the feeling that in an ideal world rehabilitation would begin as soon as possible, but in the real world it is tied to whenever your appointment is and that can mean significant delay, which in turn can impair recovery.

User
Posted 19 Apr 2022 at 15:09

Hi Paul

I totally agree with what you said and your concerns! I have spoken to the physio nurse today and she is going to email urology to see if they can speed up my ED appt as she feels that the 21st June (considering I am already 12 weeks post op now) is way too long away 

I do not understand it at all why I have to wait and PCUK specialist nurses are also saying that I should start with a pump now as well. Like you said…scary when it keeps coming up with the “use it or lose it” comments. 

Try pushing your urology dept for an appt sooner Paul? 

User
Posted 20 Apr 2022 at 13:31

If you do end up having to buy one yourself - like i did. Make sure you get it VAT free. As a cancer patient you are VAT exempt - One small bonus is suppose !!

User
Posted 25 May 2022 at 22:00

Originally Posted by: Online Community Member

If you do end up having to buy one yourself - like i did. Make sure you get it VAT free. As a cancer patient you are VAT exempt - One small bonus is suppose !!

can I ask what you bought? My hubby is 9 weeks post op. Have asked GP today. We will see but need a plan B.

User
Posted 26 May 2022 at 08:32

Just to jump in.  I bought a battery operated pump - PRIMUSmed Vacuum Erection Aid System (no relation to this company, just what I bought).  There is a UK website that sells them for £265.  I am just using it as an "exercise" tool and it does the job very well.   I find the automatic system is handy because you can use it while doing something else like reading or watching TV in bed.  So far not tried it for sex as I haven't mustered up enough courage to attach the rubber ring in case I need to call the fire brigade to cut it off :-)

My consultant advised to start as soon as the catheter came out, so I've been using it twice a day from week 3.

Hope that helps.  

User
Posted 07 Jun 2022 at 13:28

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

If you do end up having to buy one yourself - like i did. Make sure you get it VAT free. As a cancer patient you are VAT exempt - One small bonus is suppose !!

can I ask what you bought? My hubby is 9 weeks post op. Have asked GP today. We will see but need a plan B.

Somaerect Response II

Took a bit of getting used to but now its fine - use it 2-3 times a week

For exercise only, as i havn't  been able to get the rings to work well enough to keep an erection for mre than a few minutes - even with the tightest one.

 

User
Posted 07 Jun 2022 at 17:23

Just an update - still waiting for the ED clinic to call me which is on the 20th June so will be able to update what is going on but urology support nurses are still telling me not to buy anything or try one till after I have spoken to them. 

This is amazing how different areas of the country advise different things. PCUK support said that masturbation is absolutely fine and even they are confused as to why so long to wait to speak to ED clinic considering it was the 24th January i had my RALP! 

the use or lose it phrase the keeps popping up is becoming a worry now 😒 I just want to make sure that I am giving myself the best chance of a recovery. The way it carries on, the life of a monk is a reality πŸ˜‚ 

User
Posted 20 Jun 2022 at 13:14

Well tomorrow after just shy of 6 months post RALP, I finally get my call from ED clinic! 

am hoping something positive comes from it. I’m not sure what to expect. My wife thinks they will just prescribe Viagra or something like that but am hoping to be able to get a pump. 

Am scared of the use it or lose it statement that I have heard many times so anything to help increase any feeling or erection will be a bonus. 

any advice what to ask the urology ED clinic tomorrow? 

User
Posted 20 Jun 2022 at 14:05
In many many cases the gold standard treatment is daily low dose Tadalafil 5mg if you can cope with it and side effects. Way better to have it daily than 20mg hits. A pump is an absolute must but your area may not provide one. If you want one for penetrative sex then you need a pro one like my soma erect response 2. If for exercise ( which is an absolute must ) then a simple love honey one will do. Whatever the outcome you deffo need a pump or he will not be useable later on !!!
User
Posted 20 Jun 2022 at 14:32

Thanks Chris. I’m on 5mg Cialis and have been since the catheter came out. No issues at all with side effects. 

Great advice with pumps. Let’s see what they say tomorrow so fingers crossed  

User
Posted 20 Jun 2022 at 14:42

Originally Posted by: Online Community Member
Soma-erect Response - NHS code 15019

The SomaErect Response II accounts for 80% of NHS prescriptions.

With the SomaERect Response II, if you intend to use it for sex (rather than just rehab), you should also order:
3 spare Surefit constriction rings - NHS code 15222

It only comes with 1, and you may need 2 to work. They have a life of about 40 uses.

The 3 spares are by default a small, a medium, and a large (and the pump comes with one medium). If you know what size you need, you can intercept the prescription and ask the pharmacy to note all 3 should be a specific size, but there's no separate order numbers for these - it's passed as a note to iMEDicare with the order.

I would strongly suggest you get booked on a pump clinic session too (usually an off-shoot of the ED clinic, but probably much shorter waiting list), where they show you how to use it. This doubles the chances of using it successfully at home afterwards.

Edited by member 20 Jun 2022 at 14:58  | Reason: Not specified

User
Posted 20 Jun 2022 at 14:54

Thanks Andy! Will ask about this tomorrow 

User
Posted 21 Jun 2022 at 14:34
We’re still in discussion with GP, seems to be a post code lottery depending on area as to whether available on NHS.
User
Posted 21 Jun 2022 at 14:52

Yes Jayne it is a lottery I’m afraid! 

So after having a call with ED clinic this morning (I am under Medway area) I was given a full explanation of primary treatment and then secondary treatment. So was given lots of options which was - 

primary treatment - 

Tadalafil 20mg to be used once a week only and stopping taking daily 5mg Cialis on the day of trying the new tablet and not taking one the day after. 

secondary options were - 

Injections into my penis and the risks involved, the seed applicator up my penis (although nothing available to order) or the soma pump which is available on NHS in my area. 

however, I was advised that the best option would be tablets and on a 4 month trial and if it doesn’t work, I can then take the pump. 

So have decided to use the cheap love honey pump for penile health and then see how it goes for 4 months with tablets! 

 
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