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Long waiting list for ED clinic at hospital

User
Posted 25 Oct 2025 at 17:10

Hi - After having hormone and radiotherapy 8 years ago from which my sex life recovered, my cancer returned and I am now 3 months post non-nerve sparing salvage robotic prostatectomy and feeling well recovered physically. Everything I was told at the time of my catheter being removed implied that as a matter of routine I would see a specialist ED nurse at 3months post op - however I phoned them last week and was informed that I had to fill out a form and there would be a waiting time of around 4 months from them receiving the form for an appointment. This would mean 7 to 8 months without any remedial ED treatment which seems a long time to me. Having read many posts on this forum I am thinking, in the meantime, I should maybe just go ahead and buy a pump to maintain penile strength and experiment with sex. I've read a lot of recommendations and looking online at the iMEDicare website the SOMAerect response ll is the only one they sell now - so I'm thinking this would be the most useful choice ? Also I have been advised that I should take sildenafil (or similar) regularly which will have no effect on erections for non-nerve sparing but will encourage blood flow to the area apparently. Any advice would be greatly appreciated.

User
Posted 25 Oct 2025 at 21:34
Your salvage surgery after previous RT is the opposite way round to me, so I can't advise from experience. However usual advice is to start remedial approaches to ED once you are past the short term impact of surgery. I can't remember the exact dates now, but it would have been around the 3-month point

The SomaErect pump was the one I was prescribed, so if you can get it for yourself online it might be reasonable to try it. For general blood flow to the penis to keep it healthy the usual prescription is tadalafil which has a slower and longer lasting effect than sildenafil which is given to provide a necessary short term boost for "events". You may find your GP prepared to be helpful and prescribe it; in my case the hospital ED advice ended up with a request to the GP to manage the ongoing prescriptions and monitoring. However previous threads here suggest that the way it works seems to vary in different areas.

User
Posted 25 Oct 2025 at 21:42

You can try getting the pump from your GP - some might be prepared to order it without the ED clinic paperwork.

The prescription part numbers you want are most likely 15019 (pump itself and accessories), and 15222 (3 spare Surefit constriction rings - it only comes with 1 and these are consumables and ideally go on repeat prescription).

You might also try contacting the ED clinic and ask to be put on the pump clinic list, which is usually much shorter as they're run by the pump company reps rather than the NHS.

If you do order the pump yourself, make sure to ask for it zero VAT rated (medical appliance) and not 20% VAT rated (sex toy).

The pump cost includes having it demoed on you by the iMEDicare reps, both prescription and self-purchase. Research has shown that this doubles the number of people who use it successfully, and some NHS areas will only allow it to be prescribed after a pump clinic session where they offer to demo it (you don't have to have it demoed on you, but in those areas, you do have to attend the session to get the paperwork to take back to your GP). If you buy it privately or on prescription and don't get the demo, you can call the company and ask for it. It they find you needed an extra large model, they'll usually swap the parts when they demo it. (If you attend the pump clinic first, they'll order the right size parts in the first place.)

In terms of PDE5 inhibitors, they aren't going to be as useful for you because of the no nerve sparing, but you could try asking for Tadalafil or Sildenafil. Generally, Tadalafil are the more useful of the two for their healing properties, and therefore better to try first if you can get them.

User
Posted 26 Oct 2025 at 07:04

Zero1, good advice above. In addition use some manual stimulation, even better it you can get someone to give you a hand. My surgery preceded my SRT, I was supposedly non nerve sparing but did get some stirrings down below. Always worth trying PDE5 inhibitors, I was told nerve bundles are like a network and signals may take a different route. 

Thanks Chris 

User
Posted 26 Oct 2025 at 16:19

Hi Zero1

I understand your frustration.

When I had prostatectomy 15 years ago ED nurses were hardly heard of!  My consultant suggested I start by massaging my penis and scrotum, masturbate (yes, you can with a limp penis! Mutual masturbation worker well for us even now) and start using a VED. So I think you should take this problem into your own hands!

Using a VED to create an erection seems unnatural but you soon get used to it. I have made a live video for training and how to use it more seriously which you may like to view if you let me have your email address via a private message.

Also you may find the following link which explains how we incorporate a VED into our love making sessions:

https://community.prostatecanceruk.org/posts/t28948-Re-establishing-Sex-Life

 

Edited by member 26 Oct 2025 at 16:20  | Reason: Not specified

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

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User
Posted 25 Oct 2025 at 21:34
Your salvage surgery after previous RT is the opposite way round to me, so I can't advise from experience. However usual advice is to start remedial approaches to ED once you are past the short term impact of surgery. I can't remember the exact dates now, but it would have been around the 3-month point

The SomaErect pump was the one I was prescribed, so if you can get it for yourself online it might be reasonable to try it. For general blood flow to the penis to keep it healthy the usual prescription is tadalafil which has a slower and longer lasting effect than sildenafil which is given to provide a necessary short term boost for "events". You may find your GP prepared to be helpful and prescribe it; in my case the hospital ED advice ended up with a request to the GP to manage the ongoing prescriptions and monitoring. However previous threads here suggest that the way it works seems to vary in different areas.

User
Posted 25 Oct 2025 at 21:42

You can try getting the pump from your GP - some might be prepared to order it without the ED clinic paperwork.

The prescription part numbers you want are most likely 15019 (pump itself and accessories), and 15222 (3 spare Surefit constriction rings - it only comes with 1 and these are consumables and ideally go on repeat prescription).

You might also try contacting the ED clinic and ask to be put on the pump clinic list, which is usually much shorter as they're run by the pump company reps rather than the NHS.

If you do order the pump yourself, make sure to ask for it zero VAT rated (medical appliance) and not 20% VAT rated (sex toy).

The pump cost includes having it demoed on you by the iMEDicare reps, both prescription and self-purchase. Research has shown that this doubles the number of people who use it successfully, and some NHS areas will only allow it to be prescribed after a pump clinic session where they offer to demo it (you don't have to have it demoed on you, but in those areas, you do have to attend the session to get the paperwork to take back to your GP). If you buy it privately or on prescription and don't get the demo, you can call the company and ask for it. It they find you needed an extra large model, they'll usually swap the parts when they demo it. (If you attend the pump clinic first, they'll order the right size parts in the first place.)

In terms of PDE5 inhibitors, they aren't going to be as useful for you because of the no nerve sparing, but you could try asking for Tadalafil or Sildenafil. Generally, Tadalafil are the more useful of the two for their healing properties, and therefore better to try first if you can get them.

User
Posted 26 Oct 2025 at 07:04

Zero1, good advice above. In addition use some manual stimulation, even better it you can get someone to give you a hand. My surgery preceded my SRT, I was supposedly non nerve sparing but did get some stirrings down below. Always worth trying PDE5 inhibitors, I was told nerve bundles are like a network and signals may take a different route. 

Thanks Chris 

User
Posted 26 Oct 2025 at 09:22

Our favourite prostate cancer guru, Dr Scholz, discusses erectile dysfunction and penile atrophy, following radical treatments in this link.

https://youtu.be/l2Mo3g8SDPw?si=JlO9otn2tj5uGRKs

When discussing penile rehabilitation methods he does not mention pumps at all. This is a bit strange when most research shows that pumps can have a limited benefit.

He believes penis injections should be used at least once a week, less than 6 weeks, after surgery.

His overall view on penile recovery seems pretty pessimistic. It seems to me, that whatever artifical methods we use to try and keep our todgers healthy, pale into insigificance when compared to nature's  maintenance programme.

Most men, unbeknown to them, have 4 erections a night, that's a damn good service plan. If you tried to replace them by using a pump, you'd end up with arms like Popeye.

As regulars know I'm a big fan of Invicorp injections. I get 5 ampoules a month on prescription. Following RARP, it took me 6 months, to get mine prescribed. I can't see many UK urologists/GPs following Dr Scholz's recommendation, and prescribing such an expensive drug to simply be used for exercise purposes.

Edited by member 26 Oct 2025 at 14:22  | Reason: Typo

User
Posted 26 Oct 2025 at 12:43

Thanks Adrian - I will leave the options of injections or pellets etc until I get my ED clinic appointment - just thinking a pump might keep things active down there while I wait out the 4 months until then.

User
Posted 26 Oct 2025 at 16:19

Hi Zero1

I understand your frustration.

When I had prostatectomy 15 years ago ED nurses were hardly heard of!  My consultant suggested I start by massaging my penis and scrotum, masturbate (yes, you can with a limp penis! Mutual masturbation worker well for us even now) and start using a VED. So I think you should take this problem into your own hands!

Using a VED to create an erection seems unnatural but you soon get used to it. I have made a live video for training and how to use it more seriously which you may like to view if you let me have your email address via a private message.

Also you may find the following link which explains how we incorporate a VED into our love making sessions:

https://community.prostatecanceruk.org/posts/t28948-Re-establishing-Sex-Life

 

Edited by member 26 Oct 2025 at 16:20  | Reason: Not specified

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 28 Oct 2025 at 16:58

Thanks Pratap - your posts are very informative and helpful. With regard to your video, I tried private messaging you but unfortunately because I'm fairly new to the forum the site automatically blocks me from private messaging other members.

 
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