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Tadadafil

User
Posted 01 Jan 2019 at 20:47

Sorry if this is obvious. I am 3 weeks on from my robotic RP. All going well and continence slowly returning. Upon leaving hospital I was prescribed the usual drugs including 8 Tadadafil which I was told to take twice weekly. Other than being told that they were for my libido I was not given any other information. From comments on this forum I have gathered that they are prescribed for penile rehabilitation. Is just taking them enough? I have partial nerve sparing and would say that a few hours after taking the tablets I was able to achieve 30% of what I was before the operation. When my I have taken all 8 is that it or do I need more? Also I have read accounts of pumps on the forum. Will one of these  be prescribed as a matter of course or do I need to ask. I intend to raise these issues when I next see the medics but as yet I do not have a date. From comments on the forum it seems that ED needs to be addressed as soon as possbile after surgery. Any advice appreciated.

User
Posted 01 Jan 2019 at 23:18
Someone is trying to save money. If you were in one of the caring CCGs you would have been given a prescription for 2.5mg or 5mg Tadalafil which you take daily to help with blood flow to the pelvic area and repair of the nerve bundles.

The 8 tablets you have been prescribed are most likely the 20mg dose which are designed for an 'event' if you get my drift. You can continue to take them twice a week and ask your GP for a repeat prescription each month, or you can ask the GP to prescribe the daily dose instead, or you could get a pill cutter from the chemist and try half a 20mg tablet every 2 days. Don't be persuaded to change to Viagra instead - there is no research to suggest that Viagra has the same healing qualities.

Ask the GP or your urology nurse whether there is an ED service or andrology clinic in your area and, if so, ask for a referral.

Tablets don't do anything for libido but they may help with the ED.

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

User
Posted 02 Jan 2019 at 08:37
Great advice above. If you have any nerve sparing it seems the gold standard is daily 5mg Tadalafil for as long as you can get it , a proper ED clinic , and a professional prescribed pump which you really need to use as often as your life allows. The tadalafil repairs and the pump keeps your flesh and chambers elastic and prevents atrophy and shrinkage over time. May I also suggest that a cheap Durex pleasure ring supplied at chemists and supermarkets can turn a 30% into a 60% etc etc. Good luck and don’t despair. It took me 2 yrs to be fully functioning.

If life gives you lemons , then make lemonade

User
Posted 06 Jan 2019 at 19:07
Hello Zebulon,

Good news to read that your continence is already slowly returning, that's quick and may bode well for your future recovery.

What size Tadalafil were you initially prescribed, and, do you have a repeat prescription?

From my experience Tadalafil/Cialis was prescribed as a daily 5mg tablet. The purpose was to promote blood circulation around the body and it would help where any surgery had maybe made blood flow restricted or difficult.

8 x 50mg Sildenafil/Viagra were prescribed to me for, as Lyn states above, "event" tablets, IE when you want to have sex.

Important to note that none of the tablets are guaranteed to work for all.

With regard to medication and recuperative kit, pumps for example, it seems common that if you don't ask you don't get?

As stated above some pumps can cost £400. When I asked my GP for a pump, he very honestly told me he knew very little about them and the supposed benefits, and asked me to justify the outlay. So I prepared a letter outlining the business case for me to have a pump. I got one, and the meds I asked for. In the meantime I'd bought a pump online that did the same job, just not as fancily.

Lovehoney have a sale on at the moment. I'm sure there are other sites out there.

Anyone in your position has a choice. Wait for the NHS to kick in and supply what you need. get some of what ever to is privately, use it and the positive results can then be presented to your NHS provider to require them to fund your need.

In the meantime, exercise the area as much as you can to promote blood flow.

Atrophy! The one word that strikes fear into us all. I have no idea how and when tissue becomes atrophied, and beyond recovery.

And I was never prepared to give it some time to find out. If it were me, and it once was, I would do everything I could as soon as I could to get blood flowing, exercise, and get the kit and there medication that may help me.ATB

dave

Do all you can to help yourself, then make the best of your time. :-)
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User
Posted 01 Jan 2019 at 23:18
Someone is trying to save money. If you were in one of the caring CCGs you would have been given a prescription for 2.5mg or 5mg Tadalafil which you take daily to help with blood flow to the pelvic area and repair of the nerve bundles.

The 8 tablets you have been prescribed are most likely the 20mg dose which are designed for an 'event' if you get my drift. You can continue to take them twice a week and ask your GP for a repeat prescription each month, or you can ask the GP to prescribe the daily dose instead, or you could get a pill cutter from the chemist and try half a 20mg tablet every 2 days. Don't be persuaded to change to Viagra instead - there is no research to suggest that Viagra has the same healing qualities.

Ask the GP or your urology nurse whether there is an ED service or andrology clinic in your area and, if so, ask for a referral.

Tablets don't do anything for libido but they may help with the ED.

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

User
Posted 02 Jan 2019 at 08:37
Great advice above. If you have any nerve sparing it seems the gold standard is daily 5mg Tadalafil for as long as you can get it , a proper ED clinic , and a professional prescribed pump which you really need to use as often as your life allows. The tadalafil repairs and the pump keeps your flesh and chambers elastic and prevents atrophy and shrinkage over time. May I also suggest that a cheap Durex pleasure ring supplied at chemists and supermarkets can turn a 30% into a 60% etc etc. Good luck and don’t despair. It took me 2 yrs to be fully functioning.

If life gives you lemons , then make lemonade

User
Posted 04 Jan 2019 at 23:38

I spoke to my GP today and was prescribed 5mg tadalafil daily. Thanks to Lynn and Chris for the helpful advice. Whilst this result is an example of how helpful this forum is, I should not have needed to ask for this from the GP. Given the potential benefits surely it ought to have been prescribed as a matter of course.

thanks both 

Alan 

Edited by member 04 Jan 2019 at 23:54  | Reason: Not specified

User
Posted 05 Jan 2019 at 09:04

My husband has bern taking Cialis 5 mg daily for 2,5 month, but still without any effect. For those of you who got back after 1-2 years, did you have any reaction at all that early? I got the impression from the urolog after 6 week-control that if there was no reaction at all, it might possibly not help with the tablets  

User
Posted 05 Jan 2019 at 10:17

This is really interesting, my husband is now 3 weeks post RP. He was not given any tablets upon discharge from the hospital. we have not been given an appointment to go back and see the surgeon yet, he said it would be around 6 weeks. He does have an appointment in the ED clinic on the 4/2, but this will be almost 2 months post surgery. would you advise us to ring our GP and ask for these tablets? 

Thanks

User
Posted 05 Jan 2019 at 10:22
I think you have misunderstood, Penelope. What effect do you think you would be able to see or evidence? All of the effect / impact is going on internally, bringing oxygen to the pelvic area via increased blood flow to help with repair of damaged tissues. There isn't anything to see.

John took Cialis daily dose for 3 years. Your urologist has given the wrong impression or you misheard ... the general rule is if you haven't recovered erections by 2 years post op you probably won't recover (but in our case that was disproved as the biggest improvement was between years 2 and 3)

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

User
Posted 05 Jan 2019 at 10:26

Originally Posted by: Online Community Member

This is really interesting, my husband is now 3 weeks post RP. He was not given any tablets upon discharge from the hospital. we have not been given an appointment to go back and see the surgeon yet, he said it would be around 6 weeks. He does have an appointment in the ED clinic on the 4/2, but this will be almost 2 months post surgery. would you advise us to ring our GP and ask for these tablets? 

Thanks

No, I would wait for the ED  appointment as the ED nurse is probably much more knowledgeable and able to prescribe or direct the GP to prescribe things that you might otherwise havd to fight for. 

Have you read my 'one wife's story of ED' thread?

 

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

User
Posted 05 Jan 2019 at 10:48

Originally Posted by: Online Community Member
I think you have misunderstood, Penelope. What effect do you think you would be able to see or evidence? All of the effect / impact is going on internally, bringing oxygen to the pelvic area via increased blood flow to help with repair of damaged tissues. There isn't anything to see.

John took Cialis daily dose for 3 years. Your urologist has given the wrong impression or you misheard ... the general rule is if you haven't recovered erections by 2 years post op you probably won't recover (but in our case that was disproved as the biggest improvement was between years 2 and 3)

 

Thank you!!   i know i didn’t misheard, but I’m glad to read this.  What I’m curious about is at what time you first experienced any signs of penis-changes at all - even it was no erection  

User
Posted 05 Jan 2019 at 10:53

Thanks Lyn, you dont think that 8-9 weeks without the help of these tablets would do any harm then? Is thrre anything he can be doing to help himself before the ED appointment?

Im not sure if i’ve read your thread? I’ll search it out.

It does make me wonder why some hospitals give these tablets out on discharge and others dont! just leaves us as the patients wondering if were getting the full treatments?

Im also very grateful to this forum, without it we would know very little.

one last question, is there a superior tablet to ask for?

 

Thanks again.

User
Posted 05 Jan 2019 at 14:13
Tadalafil is just generic now. Despite only being 48 at surgery I was denied it for a year and then bought it privately, and hey presto improvements !!! Eventually they paid for it and I’m 3 1/2 yrs post op and fully functioning erection wise. I still use pump for exercise. Sadly I’m not cured :-((

If life gives you lemons , then make lemonade

User
Posted 06 Jan 2019 at 01:36
Ladies, here is the link to my thread on ED - https://community.prostatecanceruk.org/posts/t9839-One-wife-s-story-of-ED

Mrs Lewis, no I don’t think waiting 9 weeks will make a big difference - many men have to wait until the post-op appointment to even get a referral to ED services so 3 - 6 months is not unheard of. It is important not to build your hopes up too much; although the science is solid on the benefits of taking daily Cialis (2.5 or 5mg) there are many CCGs that simply will not approve it in their area - and generally, if the CCG says no, the GP is not permitted to prescribe. The ED clinic and / or the surgeon may have more pulling power but that still doesn’t mean you will get it. Same goes for the pump - essential for penile rehabilitation but many CCGs don’t approve it because it costs about £400.

Penelope, the first changes we saw were when he had his first caverject injection which I think was about 6 months post-op. The first natural changes were probably in year 2 and erectile function had all but returned in year 3. There is a member here who says he had an erection as soon as he came out of hospital, and still with the catheter in place, but he must be one of the blessed :-/

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

User
Posted 06 Jan 2019 at 01:38
PS - I hope both of you have picked up that your respective men are now entitled to free prescriptions for 5 years? Collect an exemption form from the chemist, fill it in and then drop it off with the GP to sign.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Jan 2019 at 01:48

Originally Posted by: Online Community Member

Is thrre anything he can be doing to help himself before the ED appointment?

He can masturbate, stroke, massage ... anything that gets blood flowing to the area is good. You can masturbate him,   although without any engorgement it is easier if you use lots of lube, and you can give him oral sex once he is reasonably continent - the sooner he gets confident about the possibility of orgasm without an erection the less stressed he is likely to be about it all. 

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

User
Posted 06 Jan 2019 at 19:07
Hello Zebulon,

Good news to read that your continence is already slowly returning, that's quick and may bode well for your future recovery.

What size Tadalafil were you initially prescribed, and, do you have a repeat prescription?

From my experience Tadalafil/Cialis was prescribed as a daily 5mg tablet. The purpose was to promote blood circulation around the body and it would help where any surgery had maybe made blood flow restricted or difficult.

8 x 50mg Sildenafil/Viagra were prescribed to me for, as Lyn states above, "event" tablets, IE when you want to have sex.

Important to note that none of the tablets are guaranteed to work for all.

With regard to medication and recuperative kit, pumps for example, it seems common that if you don't ask you don't get?

As stated above some pumps can cost £400. When I asked my GP for a pump, he very honestly told me he knew very little about them and the supposed benefits, and asked me to justify the outlay. So I prepared a letter outlining the business case for me to have a pump. I got one, and the meds I asked for. In the meantime I'd bought a pump online that did the same job, just not as fancily.

Lovehoney have a sale on at the moment. I'm sure there are other sites out there.

Anyone in your position has a choice. Wait for the NHS to kick in and supply what you need. get some of what ever to is privately, use it and the positive results can then be presented to your NHS provider to require them to fund your need.

In the meantime, exercise the area as much as you can to promote blood flow.

Atrophy! The one word that strikes fear into us all. I have no idea how and when tissue becomes atrophied, and beyond recovery.

And I was never prepared to give it some time to find out. If it were me, and it once was, I would do everything I could as soon as I could to get blood flowing, exercise, and get the kit and there medication that may help me.ATB

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 06 Jan 2019 at 23:26

You can get an Erecaid Esteem on the NHS or at least I was prescribed one, the only drawback is it takes a minute or two to set up and depending on which ring to use (4 supplied in different sizes) can mean re pumping again, which means starting all over AGAIN, and it can only be left on for 15 mins . Another drawback is your partner feels discomfort from the ring rubbing her pubic bone area.

Copy and paste this link to see the site for the Erecaid
https://www.stressnomore.co.uk/brands/osbon.html?msclkid=a0b60eb29db811f83e5e5280161b7cdb&utm_source=bing&utm_medium=cpc&utm_campaign=Brands&utm_term=erecaid&utm_content=Osbon%20Erecaid

User
Posted 07 Jan 2019 at 00:07
We also had the Osbon Erecaid (subsequently passed on to another member here who couldn't get it on the NHS). It is a postcode lottery - not available everywhere despite NICE approval.

The ring can be kept on for a maximum of 30 minutes. I can honestly say that the ring has never ribbed me or caused me any discomfort - it may depend on which position you prefer?

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

User
Posted 07 Jan 2019 at 23:32

Originally Posted by: Online Community Member

the only drawback is it takes a minute or two to set up and depending on which ring to use (4 supplied in different sizes) can mean re pumping again, which means starting all over AGAIN, and it can only be left on for 15 mins . Another drawback is your partner feels discomfort from the ring rubbing her pubic bone area.

Or you both can try to turn a potential drawback into part of your intimacy, in which case it can enhance your fun?  Your love life can survive?  Or it could thrive if you adapt?

I understand it can be difficult, been there, done that.

So much you can do to determine your eventual outcome.

atb

dave

 

Edit to add: some toys have rings added to enhance pleasure.  If you can overcome the initial "problems", turn them into opportunities?  Or at least options? 

Edited by member 08 Jan 2019 at 00:25  | Reason: Not specified

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 02 Feb 2019 at 23:22
I have now been on Tadalafil since 5 of Jan (5mg daily). My perception is that they are aiding my recovery in the following ways:

I had no ED issues prior to surgery and was about 30% of what I was post surgery. I have nerves spared on one side only so I viewed any movement on the ED front as a good sign. Since taking the Tadalafil I would say there has been a marked improvement on the 30%, without the use of any aides or increasing the dosage. I cannot yet achieve a functional erection but things do seem to be moving in the right direction.

My continence has improved significantly. Prior to starting the tablets I was dry through the night and during the morning but became increasingly leaky as the day progressed, although I have only ever needed a single pad per day since about a week after the catheter came out. This is pretty typical so far as I can tell. Whilst things were obviously moving in the right direction, my perception is that I have made a significant improvement since starting the tadalafil. I am now dry with only the occasional leak. This may have nothing to do with the tablets but my continence did seem to improve within a week or so of starting the tablets after what I would describe as slow but steady progress.

Following surgery my testicles were slightly swollen and tender. The pain/discomfort was the same as the pain I suffered for about 3 months following my vasectomy 20 years ago. This I understand is common a side effect of the surgery, so I just put up with it. However, this cleared up within a week or so of my starting the tablets.

I have not obtained any medical advice on this and the improvements that I have experienced may be unrelated to each other and the tadalafil. However, even for the ED issue alone, the tablets are well worth a try.

User
Posted 03 Feb 2019 at 07:59

You are a very lucky man 

You have been given  tadafil etc When you were discharged from the hospital .

After my RP operation last December I have not given a single pain killers! 

YOUR the lucky one. 

D.R

Edited by member 01 Mar 2019 at 08:20  | Reason: Not specified

 
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