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3 days post op

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User

Posted 05 Feb 2019 at 12:11

Hi Michaela,

Pleased it all went well. Thanks, I prefer Donald Trump to poo, but some would say they are the same.

I think you should try Tadalafil 5mg daily and ask for a pump. They cost the NHS around £160.

Just had my 9 month PSA, still undetectable so good news, but no sign of life on the ED front. Not too bothered about that, and Her Loveliness is quite relieved! 😂😂

Cheers, John.

User

Posted 05 Feb 2019 at 13:19

A very positive report Michaela.

It sounds like the operation went really well and has removed the cancer especially with it now being T2c.

I think you should ask for a pump to aid with recovery from ED.

Hope PSA results.

All the best going forward, time to get on and enjoy life.

Ian

Ido4

User

Posted 05 Feb 2019 at 13:55

Pump is the most essential piece of kit in my opinion if you want EF back one day. It’s been my saviour. Plead with your doc , or buy a professional one yourself ( imedicare.com) , or even get an Ann Summers one seriously. It takes 10 minutes a day max. I fit mine in STILL despite return of function every time I shave. Some may disagree but I’m still seeing improvements at the 3 1/2 yr mark for sure. I’d up the Cialis too to 5mg daily if poss.

If life gives you lemons , then make lemonade

User

Posted 05 Feb 2019 at 16:12

Originally Posted by: Online Community Member

Thanks for the good wishes and advice guys. I just checked out the cost of a pump at imedicare and they are a bit pricey. Can anyone recommend any that's good but a bit cheaper please? We aren't due to see the ED nurse again until probably May, long time when you want an erection! Also you suggest uping the Cialis, is this something we could ask our Gp to do? Not sure we'd get very far with the ED nurse.

User

Posted 05 Feb 2019 at 16:43

5mg daily Cialis and a pump should be available free on prescription from your GP.

Cheers, John.

User

Posted 05 Feb 2019 at 16:49

Oh that's great! Thanks John.

User

Posted 05 Feb 2019 at 17:29

Just a heads up..

Not all areas will prescribe 5mg cialis.. or prescribe a pump ..

I had to buy my own pump ( ErecAid Esteem ) and only had 5 mg cialis prescribed for 1 month ... even though I’ve paid the same NI stamp as everyone else..

Hopefully your area will be more generous than mine is

Best Wishes

Luther

User

Posted 05 Feb 2019 at 17:34

Originally Posted by: Online Community Member

Just a heads up..

Not all areas will prescribe 5mg cialis.. or prescribe a pump ..

I had to buy my own pump ( ErecAid Esteem ) and only had 5 mg cialis prescribed for 1 month ... even though I’ve paid the same NI stamp as everyone else..

Hopefully your area will be more generous than mine is

Best Wishes

Luther

I might add that I'm not moaning too much....as I get prescribed 8 caverject dual chamber per month, although I believe I'm only entitled to 4 under NICE guidelines?
I'm pretty sure that's not a generous gesture on my GP's part..... He prescribes 4 ..but there are 2 in a box lol! https://community.prostatecanceruk.org/Scripts/tinymce/plugins/emoticons/img/smiley-laughing.gif

Edited by member 05 Feb 2019 at 17:43 | Reason: Not specified

User

Posted 05 Feb 2019 at 17:40

You may live in an area where the CCG has decided that pumps and daily cialis will not be prescribed.

You could get a pill cutter from the chemist, cut the 10mg in half and take it every 2 days. The starting prescription is supposed to be 2.5mg anyway, uploading to 5mg if there isn't a significant response.

Brill pathology :-)

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

User

Posted 05 Feb 2019 at 19:36

Hi Michaela, I posted this recently somewhere else. Maybe useful here

I have copied links below from amazon of what I use. I added the insert because it is softer and more comfortable. You may need to trim it. The pump comes with a squeezy ball type pump which soon becames ineficient so I got the scissor grip one. The pump also comes with a ring which is rubbish, so you will need to get others if you want.

I dont know how to make the links work properly so you will need to copy them to your browser.

https://www.amazon.co.uk/Pipedream-Pump-Worx-Potent-Black/dp/B005EILA1G/ref=gp_aw_ybh_a_1?_encoding=UTF8&psc=1&refRID=4X5D34XDQ8142FY27WMT

https://www.amazon.co.uk/You2Toys-Transparent-Replacement-Cuff-Pumps/dp/B004D755GU/ref=pd_aw_fbt_img_2/257-6491659-0966014?_encoding=UTF8&pd_rd_i=B004D755GU&pd_rd_r=0c552ce1-25f3-11e9-bc3f-c119fe0d879a&pd_rd_w=cBAC7&pd_rd_wg=HqZDk&pf_rd_p=829773a1-0532-4117-a22f-5a653a869422&pf_rd_r=EYNNR36078DTPBS0Q8WA&psc=1&refRID=EYNNR36078DTPBS0Q8WA

https://www.amazon.co.uk/gp/aw/d/B001LYZ5RC/ref=ppx_yo_mob_b_post_ship_o0_img?ie=UTF8&psc=1

Good luck

Cheers

Bill

User

Posted 06 Feb 2019 at 20:52

Originally Posted by: Online Community Member

You may live in an area where the CCG has decided that pumps and daily cialis will not be prescribed.

You could get a pill cutter from the chemist, cut the 10mg in half and take it every 2 days. The starting prescription is supposed to be 2.5mg anyway, uploading to 5mg if there isn't a significant response.

Brill pathology :-)

Ah Lyn do you think it would be better to take 2.5mg every 2 days then? What do you think the nurses reasons were for supplying only 2 10mg tablets?

Mr L has rung her back today to ask for a pump, unfortunately he only got her answerphone, and she's notoriously bad for not returning calls.

User

Posted 06 Feb 2019 at 20:55

Thanks for all those links Bill, so many to choose from.

Still trying to get one from the ED nurse, if she ever answers our calls!

User

Posted 06 Feb 2019 at 21:10

I had to fight for a whole year for daily Cialis. In fact any form of Cialis. Event doses didn’t seem to work yet a daily low dose did the trick. I was told I was imagining it which made us both very angry. Cialis is now really cheap in its generic form Tadalafil, so I don’t see the problem in prescribing it. But what do I know ? As for the pump , get something cheap until / if you sort the issue or are prepared to pay yourself. In my opinion cheap pumps are ok , it’s the rings that are very important to maintain an erection good enough to use for penetration. The rings from imedicare are £30 for three which last forever and would fit a cheap pump tbh. So it can all be fixed ??? I mostly sorted my own recovery and knew far more than my ED nurse who was mostly off sick. Who could blame him .... what a job for anyone.

You are still too soon post op to be hoping / expecting any serious recovery although your recent attempts seem amazing. Never give in with this or you willl lose it !

If life gives you lemons , then make lemonade

User

Posted 06 Feb 2019 at 22:53

Originally Posted by: Online Community Member

Ah Lyn do you think it would be better to take 2.5mg every 2 days then? What do you think the nurses reasons were for supplying only 2 10mg tablets?

Mr L has rung her back today to ask for a pump, unfortunately he only got her answerphone, and she's notoriously bad for not returning calls.

No sorry, I meant starting dose of 2.5mg per day - if he cuts the 10mg in half and takes it every other day, he is getting the equivalent of 2.5mg per day. Since he has already had a semi, I guess it isn't going to be that important whether it is 2.5mg each day or 5mg every other day. Her reasons for only supplying 10mg tablets? My guess is that the CCG has instructed that this is the only dose allowed in your region; some CCGs have taken a view that they do not accept the medical evidence that daily dose improves recovery so they will only allow prescribing of 'event' dose. If it makes you feel any better, she is allowing you double what NICE says you are entitled to - in their wisdom, NICE have determined that men with ED as a result of prostate cancer or its treatment are allowed to have sex once per week so 4 Viagra tablets / 4 Cialis tablets / 4 Levitra tablets / 4 Caverject injections is all you are entitled to on NHS prescription. Just to complicate things, if you ask the ED nurse or GP for a private prescription, you lose your entitlement to ED treatments on the NHS (although I know some GPs are sympathetic and ignore that rule)

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

User

Posted 07 Feb 2019 at 15:34

Mr & Mrs L

Remember which ever medication you have stimulation is probably the key to success and then add some more stimulation. Event medication does not always act as it would on a male who has not had his bits battered by surgery. Event medication may not be effective until hours later than you expect.

Thanks Chris

User

Posted 07 Feb 2019 at 16:49

Thanks for the information Lyn. I truly despise this postcode lottery. The laughable thing about it also is we haven't even got the Cialis yet! Apparently it's going to take 3 weeks for the letter from the ED nurse to get to our Gp, and then of course a wait for them to prescribe it. Looking at some of the information brochures by PCUK, rehabilitation with pumps and pills should be started a lot earlier, not long after the catheter comes out. It makes us wonder if it's like this where other cancers are concerned?

User

Posted 07 Feb 2019 at 17:03

Chris J, I've seen you talk about the Durex ring, would this be suitable with a cheaper pump? I do apologise for my/our lack of knowledge, I just don't want time to be wasting and for it then to be too late!

Colwickchris, yes of course we can't just rely on the tablets. Interesting what you say about them not working when you expect/want them to. I suppose with only been given such a small ration they really can't be wasted!

Btw, the nurse still hasn't rung us back, that's after 2 messages left on her phone, and I know she doesn't work on Fridays! What do you think our chances are of getting a pump if we just ring our GP tomorrow? Are they allowed to just prescribe without being under the instruction of the ED nurse?

User

Posted 07 Feb 2019 at 17:28

Originally Posted by: Online Community Member

Mr & Mrs L

Thanks Chris

CC makes an important point. In our house, Viagra taken in the evening is effective the next morning and Levitra taken at tea time works later the same evening. We have just started with Cialis event dose and that seems to work in a couple of hours. If he is anxious or it starts to go wrong, none of them work.

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

User

Posted 08 Feb 2019 at 12:32

The Durex ring is only useful if you can get a partial erection, it will reinforce the hard-on and make it last longer.

The construction rings you use with a pump are much stronger and need a lot of practice to get the correct strength and technique. You should only need these if all else fails.

My rehab was delayed due to complications from the op and my ex wife pissing off but I don't think it had any long term effects as normal service has now resumed thank goodness!!

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