Dear All,
The days of any and every thing being dished out by the NHS are long gone. Only recently the issue of anti-biotics being prescribed by GPs inappropriately were discussed on the radio, and the two problems with this the fact, that they do not work for colds, and are then wasting money.
Pablito, Others, it's a letter, it may take a few minutes, and it may change your future for the better. If you need help with the wording, I will help. It's the reality of the situation that you are facing, that we all have faced, deal with it.
atb
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
Originally Posted by: Online Community MemberLyn i know my earlier post was taken with a pinch of salt in some quarters but 3 months after robotic surgery i am still getting and maintaining erections without any difficulty, i am lucky i know that and long may it continue.
I have stepped back from posting as i would hate anyone to think that i was or am gloating, this is so far from the truth, like i say for whatever reason i am back to full sexual intercourse.
I am still taking 5mg of Cialis on a daily basis and have no side effects from them and i think we are all different in how the tablets react to the individual.
My Gp has been great and very supportive and haven't had to fight for any prescriptions, again postcode lottery.
I hope my post has not offended anyone
Gary
Yes, you were one of the 2 people I referred to, the other man later saying that he was having some difficulty. I think it is great that you have recovered so well and I don't think you should avoid posting at all. My concern is to keep reminding the other guys that you are in a tiny minority and that they shouldn't see themselves as 'failing' because your recovery has been so remarkable. Nor should men start thinking 'everyone else can' when they really mean you. Research like EPIC indicate that less than 10% of post-RP men can get an erection unaided at the 12 month mark although rather more (80%) can get an erection with chemical or mechanical assistance. Unsurprisingly, the urologists reported rather better results than the patients did but John's uro's view was that the men lie to their uro and tell the truth on the questionnaire (or the wives / partners fill in the questionnaire ... I always complete John's for him :-0 )
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Hi Pablito
We have read each others posts before I think . I am now 3 months post-op with full nerve sparing . I haven't had a single natural erection of any sort since the op , but get " feelings " so real down there that I have to check .
My Urologist / ED nurse do not give Cialis to anyone at all claiming that there is no evidence that it helps anymore than using the pump EVERY day , which I have since week 7 . I achieve a full erection everyday now and hold it for 10 mins or so . I can tell things are getting better . I just know . I can now achieve penetrative sex whenever we want using the pump alone with no drugs. Ive used 20 mg Cialis and nothing , 20 mg Levitra and side-effects only , 100mg Viagra and excellent results with pump , the other day tried the " brand New wonder drug " Spedra 100mg and nothing except awful side-effects ( funny because its supposed to give the least ) . I have also tried 15mg Caverject under lab conditions with ED nurse and very promising but gave me much penis pain. I have 4 at home and will try again when I get the guts and time.
As CB99 says , everything works different on each person but that is my results for you so far . Be pushy with ED nurse and GP - I've been given nearly everything at 13 weeks !! The pump is my ( our ) saviour and I like the fact that drugs don't need to be involved. Yes its " different " but we are fine and dandy and have had some laughs and closeness .
Chris
User
Hi Pablito, my questions to your OP are in bold type mixed in below.
Originally Posted by: Online Community MemberGood Morning,
Here is the gig, I feel very very lucky, that my DV RP looks like it's worked and I was dry within 24hrs of Catheter removal. That recovery of control is very quick, you are fortunate. Which possibly rather selfishly leaves only ED to currently be addressed.
My RP left me with 50% of my nerves spared on one side. One month post op I was able to achieve an unaided semi-erection which was encouraging, albeit it not usable for penetrative sex. All good so far.
Three months post op I was prescribed and pump and 20mg of Cialis per week. The Cialis was to be halved, with one half to be taken every 3-4 days. I religiously carried out this treatment for 2 months. Result - Absolutely no improvement with my erection and the Cialis side effects where not good. What side effects did you have are you having? Over what period of time? What reason did your GP give for prescribing the Cialis? Or, why do you think you are taking it?
A client of mine who also has PCa, recently introduced me to his wife who happens to be a Senior Urology Nurse. She suggested, I switch to 5mg a day, I am on 5mg a day and have been since May 13. I was told and my research suggested that this was to aid blood flow to and around the wound areas. which my very budget conscious GP reluctantly prescribed for one month only.
I am due to see my GP again next week, and my problem is that 5mg per day has produced even worse side effects What exactly are the side effects? for me in that I cant even function properly and go about my daily routine. I now stopped taking the Cialis, but need some sort of a plan ahead of my meeting next week. I also know that I have regressed on the ED front. It is still very early days yet, and as you have had some movement fear the op it is likely that there can be and will be more movements and with treatment they should improve. It will take time and patience and effort.
Any thoughts or advice would be more than welcome!
Thanks in advance,
Pablo
Regarding getting prescriptive support in the form of Cialis or Viagra, have you written a letter to your GP outlining the business case for why you should be receiving the medication now while you are in the early stages of recovery and when it will be most likely to benefit you and help you recover function?
I did research and then wrote to my GP so that he had a good reason for giving me the medication and a pump, if he was queried by his colleagues or budget manager. He read the letter, did some Googling of his own, and prescribed me a pump, 5mg Cialis daily, and 8 x 50mg Sildenafil/Viagra every 28 days.
The before bed time Cialis gave me side effects early on, lower and upper leg ache, dry tongue, head and neck ache. I took paracetamol, thinking that the benefits I had read about and been told about were worth working through the pain and inconvenience if I could. Painkillers and sleep enabled me to persevere. I don't have any side effects any more, maybe stopped after a month or so of starting taking the meds? The Sildenafil also gives me a headache, one evening early on I took 3 as one did not appear to be working, PLEASE DON'T TRY THIS, apart from a headache nothing else happened. The side effects are lesser these days, so it can bow with working through, but we are all different so only by trial and error will you find out.
You are still relatively early post op, it is thought or estimated that recovery can continue for 2 years, I am still improving 2 years 5 months post op. There is hope for you, hopefully?
atb
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
I think you should stop the Cialis for sure if it's giving you that trouble Pablito. Yes Cialis is to create a daily bloodflow down there to keep it healthy. But I'm doing that 100% naturally and Southampton do not prescribe Cialis for that reason. And the old fella is getting fully full if you know what I mean. I'm a long way from being an expert but the Cialis sounds very negative indeed mate
Chris
User
Hi Pablito.
Sorry I get very cross when I read posts like yours, and then the responses.
WHY, WHY WHY does our National Health Service have such diverse levels of treatment. It can't all be because of selfish use of funding can it!
Nobody should have to beg or write letters setting out business plans in order to give them the best chance of being "normal" again
For what it's worth, our GP wouldn't prescribe a pump either, certainly not initially as he wanted to try Sildenafil.
We are lucky in that, apart from a runny nose, John has little side effects and they do work.
I told the GP that I had been in touch with the ED nurse and he was very anti, again because it probably comes out of his budget.
You'll not get a referral just because you ask if that is already the surgery attitude so yes you'll probably have to write a letter putting your case.
Perhaps you could ask how HE would feel if he was in your shoes.
PS, having re-read your post I'm thinking that you do, in fact, already have a pump? Or are you saying it was a consultant's request but the GP hasn't fulfilled it?
We can't control the winds - but we can adjust our sails |
User
Pablito, if you were able to get a semi erection and now you can't, I would suggest that this may be because you don't feel randy with all those side effects going on. I would stop panicking, try to relax and get in the mood. Cialis is not a miracle drug, simply a chemical that increases blood flow to bring oxygen to the prostate bed to heal the damaged nerves.
It is much easier to cope with ED if you learn how your body works.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Pablito
My OH takes 5mg daily cialis. We were fortunate in that his GP didn't quibble, although that may be a bit of A guilt trip for missing the high psa first time round.
He had side effects, mainly indigestion, bloating, irritable bowel type symptoms and a cough. The GP prescribed him omeprazole, and all the side effects disappeared!
I assume you know you get free prescriptions after a cancer diagnosis? Just checking. We didn't know.
We have been to see the surgeon today, ten months post op. OH continence is still not brilliant, and ED is ever present. He has one set of nerves left. The surgeon said that if he has had semi erections, it is very likely that the nerve sparing has worked to some degree. It may not be usable without further intervention, but we should give it time.
I think Lyn is correct. My OH had several semis a few months after surgery, but as time progressed, it's like a psychological button has been pressed.
Louise
User
Sort of.
I find it hard to believe that John is the only patient in the practice that needs Viagra to overcome PCA treatment yet it seems that the chemist next door to the GP's rarely has enough to complete the prescription if we take it straight in there.
We are often asked to return next day.
Actually, I suppose now I've seen your post it makes a sort of sense. Other men are probably given Viagra for ED other than as a result of PC and if, as you say they have to justify their output, we've probably been unlucky enough to go in once his stock is cleared
John hates going in there anyway after our first encounter with the pharmacist who came out into the shop to discuss the tablets with us while there were other people around.
Edited by member 05 Oct 2015 at 18:54
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
User
Once we all change over to the new prescription system this should no longer be a problem as the pharmacies will see immediately what stock they need to order
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Lyn i know my earlier post was taken with a pinch of salt in some quarters but 3 months after robotic surgery i am still getting and maintaining erections without any difficulty, i am lucky i know that and long may it continue.
I have stepped back from posting as i would hate anyone to think that i was or am gloating, this is so far from the truth, like i say for whatever reason i am back to full sexual intercourse.
I am still taking 5mg of Cialis on a daily basis and have no side effects from them and i think we are all different in how the tablets react to the individual.
My Gp has been great and very supportive and haven't had to fight for any prescriptions, again postcode lottery.
I hope my post has not offended anyone
Gary
User
Taking the Cialis may now be a physiological thing, because something is working and working well i have decided to continue with the 5mg for another month just in case.
I did have minor side effects when i started taking them but they have now gone so i decided to continue until my prescription runs out then i will be on my own so to speak
User
Hi Pablo
I'm coming up to 8 months. You know I'm on zero meds at all - just the pump and injections. I have not had a single natural stir yet even when being stimulated . I recently tried 50mg Spedra for 8 days with no results . However what you are saying is kind of what my hospital is getting at maybe . If you don't take the daily Cialis then no erections. I still use the pump every day and get a useable erection but with no side effects . I hate the flushed face stuffy nose and indigestion . I'll stick to the pump thanks and try to get the Caverject dose just right for an occasional nice night.
I read a post from an American woman yesterday whose husband is exactly 2 years post - op . And guess what . He woke her up the other night fully functioning and a good time was had . So there IS hope guys
Best wishes mate
Chris
User
Pablito has anything been given to you for the occasional reflux,such as Omeprazole for instance?
We can't control the winds - but we can adjust our sails |
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Hi Pablito
We have read each others posts before I think . I am now 3 months post-op with full nerve sparing . I haven't had a single natural erection of any sort since the op , but get " feelings " so real down there that I have to check .
My Urologist / ED nurse do not give Cialis to anyone at all claiming that there is no evidence that it helps anymore than using the pump EVERY day , which I have since week 7 . I achieve a full erection everyday now and hold it for 10 mins or so . I can tell things are getting better . I just know . I can now achieve penetrative sex whenever we want using the pump alone with no drugs. Ive used 20 mg Cialis and nothing , 20 mg Levitra and side-effects only , 100mg Viagra and excellent results with pump , the other day tried the " brand New wonder drug " Spedra 100mg and nothing except awful side-effects ( funny because its supposed to give the least ) . I have also tried 15mg Caverject under lab conditions with ED nurse and very promising but gave me much penis pain. I have 4 at home and will try again when I get the guts and time.
As CB99 says , everything works different on each person but that is my results for you so far . Be pushy with ED nurse and GP - I've been given nearly everything at 13 weeks !! The pump is my ( our ) saviour and I like the fact that drugs don't need to be involved. Yes its " different " but we are fine and dandy and have had some laughs and closeness .
Chris
User
Hi Pablito, my questions to your OP are in bold type mixed in below.
Originally Posted by: Online Community MemberGood Morning,
Here is the gig, I feel very very lucky, that my DV RP looks like it's worked and I was dry within 24hrs of Catheter removal. That recovery of control is very quick, you are fortunate. Which possibly rather selfishly leaves only ED to currently be addressed.
My RP left me with 50% of my nerves spared on one side. One month post op I was able to achieve an unaided semi-erection which was encouraging, albeit it not usable for penetrative sex. All good so far.
Three months post op I was prescribed and pump and 20mg of Cialis per week. The Cialis was to be halved, with one half to be taken every 3-4 days. I religiously carried out this treatment for 2 months. Result - Absolutely no improvement with my erection and the Cialis side effects where not good. What side effects did you have are you having? Over what period of time? What reason did your GP give for prescribing the Cialis? Or, why do you think you are taking it?
A client of mine who also has PCa, recently introduced me to his wife who happens to be a Senior Urology Nurse. She suggested, I switch to 5mg a day, I am on 5mg a day and have been since May 13. I was told and my research suggested that this was to aid blood flow to and around the wound areas. which my very budget conscious GP reluctantly prescribed for one month only.
I am due to see my GP again next week, and my problem is that 5mg per day has produced even worse side effects What exactly are the side effects? for me in that I cant even function properly and go about my daily routine. I now stopped taking the Cialis, but need some sort of a plan ahead of my meeting next week. I also know that I have regressed on the ED front. It is still very early days yet, and as you have had some movement fear the op it is likely that there can be and will be more movements and with treatment they should improve. It will take time and patience and effort.
Any thoughts or advice would be more than welcome!
Thanks in advance,
Pablo
Regarding getting prescriptive support in the form of Cialis or Viagra, have you written a letter to your GP outlining the business case for why you should be receiving the medication now while you are in the early stages of recovery and when it will be most likely to benefit you and help you recover function?
I did research and then wrote to my GP so that he had a good reason for giving me the medication and a pump, if he was queried by his colleagues or budget manager. He read the letter, did some Googling of his own, and prescribed me a pump, 5mg Cialis daily, and 8 x 50mg Sildenafil/Viagra every 28 days.
The before bed time Cialis gave me side effects early on, lower and upper leg ache, dry tongue, head and neck ache. I took paracetamol, thinking that the benefits I had read about and been told about were worth working through the pain and inconvenience if I could. Painkillers and sleep enabled me to persevere. I don't have any side effects any more, maybe stopped after a month or so of starting taking the meds? The Sildenafil also gives me a headache, one evening early on I took 3 as one did not appear to be working, PLEASE DON'T TRY THIS, apart from a headache nothing else happened. The side effects are lesser these days, so it can bow with working through, but we are all different so only by trial and error will you find out.
You are still relatively early post op, it is thought or estimated that recovery can continue for 2 years, I am still improving 2 years 5 months post op. There is hope for you, hopefully?
atb
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
Thanks both Chris and Dave / Country Boy.
The pump and original Cialis prescription (20mg per week) were requested by my surgeon / consultant in a letter to my Doctor. I haven't written a business case (perhaps I should) because I assumed the ED treatment was standard(ish) for my Healthcare area. The Cialis was prescribed for increasing the blood flow.
My side effects from Cialis are, splitting headaches, pains and aches in my arms and back, heartburn, diarrhea, shortness of breath, runny nose and tiredness, a bit like flu really. I need to take at least 4 Ibruprofen (200mg) a day to counter the pain - more than I needed for post op pain.
The side effects, started when I started Cialis but when on 10mg every 3-4 days did subside between doses. The daily 5mg makes me feel like I have flu the whole time and is unbearable, I constantly feel the need to go to bed and sleep it off, so I'm wondering what sort of a strategy I should look at next.
User
I think you should stop the Cialis for sure if it's giving you that trouble Pablito. Yes Cialis is to create a daily bloodflow down there to keep it healthy. But I'm doing that 100% naturally and Southampton do not prescribe Cialis for that reason. And the old fella is getting fully full if you know what I mean. I'm a long way from being an expert but the Cialis sounds very negative indeed mate
Chris
User
Cheers Chris! BTW whereabouts in Southampton are you?
User
Hi Pablito.
Sorry I get very cross when I read posts like yours, and then the responses.
WHY, WHY WHY does our National Health Service have such diverse levels of treatment. It can't all be because of selfish use of funding can it!
Nobody should have to beg or write letters setting out business plans in order to give them the best chance of being "normal" again
For what it's worth, our GP wouldn't prescribe a pump either, certainly not initially as he wanted to try Sildenafil.
We are lucky in that, apart from a runny nose, John has little side effects and they do work.
I told the GP that I had been in touch with the ED nurse and he was very anti, again because it probably comes out of his budget.
You'll not get a referral just because you ask if that is already the surgery attitude so yes you'll probably have to write a letter putting your case.
Perhaps you could ask how HE would feel if he was in your shoes.
PS, having re-read your post I'm thinking that you do, in fact, already have a pump? Or are you saying it was a consultant's request but the GP hasn't fulfilled it?
We can't control the winds - but we can adjust our sails |
User
I'm actually very shocked too Sandra ! I'm not a generally pushy person , not good at complaining in restaurants , doing a car deal etc etc . But I did say from the word go that I wanted as much erectile recovery as possible and they have positively THROWN support at me from every angle . Urologist , ED nurse , GP cant help enough , and now Oncologist . I suppose i've been very very lucky. I genuinely didn't realise there was such a postcode thing going on . I hope so much anyone in our situation gets as much as they can because they deserve it , and if you don't then persevere .
Chris
User
Dear All,
The days of any and every thing being dished out by the NHS are long gone. Only recently the issue of anti-biotics being prescribed by GPs inappropriately were discussed on the radio, and the two problems with this the fact, that they do not work for colds, and are then wasting money.
Pablito, Others, it's a letter, it may take a few minutes, and it may change your future for the better. If you need help with the wording, I will help. It's the reality of the situation that you are facing, that we all have faced, deal with it.
atb
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
Pablito, if you were able to get a semi erection and now you can't, I would suggest that this may be because you don't feel randy with all those side effects going on. I would stop panicking, try to relax and get in the mood. Cialis is not a miracle drug, simply a chemical that increases blood flow to bring oxygen to the prostate bed to heal the damaged nerves.
It is much easier to cope with ED if you learn how your body works.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Thanks for all your replies!
Lyn - despite all the side effects I seem to have with Cialis, I should persevere. Would that be for at at least 12 months post-op for the damaged nerves to heal?
Sandra, I do have a pump which was supplied rather begrudgingly with comments about budgets from the Practice manager.
Country Boy, thanks for your offer of help re business / health case, to date I've managed to get everything requested, but if that changes, I will take you up on your offer!
User
Pablito
My OH takes 5mg daily cialis. We were fortunate in that his GP didn't quibble, although that may be a bit of A guilt trip for missing the high psa first time round.
He had side effects, mainly indigestion, bloating, irritable bowel type symptoms and a cough. The GP prescribed him omeprazole, and all the side effects disappeared!
I assume you know you get free prescriptions after a cancer diagnosis? Just checking. We didn't know.
We have been to see the surgeon today, ten months post op. OH continence is still not brilliant, and ED is ever present. He has one set of nerves left. The surgeon said that if he has had semi erections, it is very likely that the nerve sparing has worked to some degree. It may not be usable without further intervention, but we should give it time.
I think Lyn is correct. My OH had several semis a few months after surgery, but as time progressed, it's like a psychological button has been pressed.
Louise
User
Thanks for your response Louise.
Yes I am on free prescriptions and omeprazole seems like the way forward.
Sorry that your husband is still continuing to endure incontinence issues, which I hope improves soon. Did your surgeon offer any further help or advice on that matter?
Sounds like you and Lyn are suggesting a "candlelight dinner for two"! - Thanks, I'll let you know how it goes!
Pablo
User
Does anybody know details on whether I would be better on daily 5mg Cialis ?? My hospital at Southampton doesn't recommend it yet I expect my doctor would prescribe it he's so good. I know I'm only 14 weeks but haven't had a single slight erection naturally despite double nerve spare. I'm thinking I should have sought Da Vinci rather than hand LRP.
Edited by member 02 Oct 2015 at 17:39
| Reason: Not specified
User
Chris, I'm not convinced at the moment.
However, if i didn't take it and was unable to achieve erections further down the road it may become a regret that I didnt !
User
Originally Posted by: Online Community MemberDoes anybody know details on whether I would be better on daily 5mg Cialis ?? My hospital at Southampton doesn't recommend it yet I expect my doctor would prescribe it he's so good. I know I'm only 14 weeks but haven't had a single slight erection naturally despite double nerve spare. I'm thinking I should have sought Da Vinci rather than hand LRP.
You torment yourself with these things - try to stop doing it! It took John 4 years of daily Cialis, plenty of Caverject, Viagra and Levitra, a lot of humour, loads of limp orgasms and some counselling from the ED nurse to sort it out.
- Data at the minute shows that regaining erections is slightly more likely with open than with Da Vinci so you gave yourself the best shot.
- You already know that it is rare for a man to regain natural erections within the first 12 months so you are expecting too much at 14 weeks
- Expecting too much causes anxiety which can prevent erections anyway
- You have had the devastating news that the op didn't get it all which probably limits your ability to relax and get jiggy
- you are on HT which results for most men in complete loss of libido
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
I'm getting the vibe !! Just asking if daily Cialis in everyone's ( past ) experience is the sensible option or proven despite my areas opinion.
I didn't have open surgery. I had Laparoscopic ( 5 holes ) , but done by surgeon instead of Mr Robot ( Colin ).
Maybe shouldn't read too much but seems many people are getting at least semis quite quickly post surgery.
We are having plenty of fun and laughs and actually taking it in our stride. I've lived with anxiety for 25 yrs so am pretty up on that. Just asking was all :-))
Edited by member 02 Oct 2015 at 20:51
| Reason: Not specified
User
Cialis makes you feel like crap. I suggest the pump then, when it's to size, quickly slapping on one of these. Works a treat.
http://www.lovehoney.co.uk/product.cfm?p=14238
User
What 'many' people Chris? I can think of only two people that gave joined here recently who claimed to be recovering erections quickly and one of those later said they were having problems after all. Our urologist told us that men who tell him they have regained erections within the first few months are usually lying or too embarrassed to admit the truth - this is also recognised in the data the NHS published about side effects from RP at the 12 month stage. We are a pretty down to earth say it how it is bunch of people but apparently out there in the real world, men are more likely to exaggerate how quickly they are recovering.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Bazza, the mental image of you sporting a Bondage Boutique cock ring with ball divider is more than a woman can bear!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Where did you get that Lyn?
The link goes to "Dr Joel Kaplan Adjustable Cock Ring". Which is apparently "Soft, stretchy and fully adjustable, this loop enhances and maintains an erection for optimum sexual prowess. With a slide-to-fit toggle, this easy-to-use cock ring applies just the right amount of pressure to boost your erection size and strength." How much time do you spend browsing these sites?
Anyway, £8.99 plus postage for what a shoelace will do is a bit steep.
All joking apart, those who are unable to obtain a pump on their NHS could try a hoover. I kid you not. A friend of a friend told me that they had been told by a friend of a friend of their's that they had seen this done. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif
* Ordered 2.
dave
edit to add, did you see this Lyn? "Screaming O Ofinity Stretchy Double Cock Ring". I don't know anyone with 2 cocks, blimey getting one working again after surgery is hard enough. Well eventually! Hopefully.
Edited by member 03 Oct 2015 at 04:32
| Reason: Not specified
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
I recently saw a report of the reasons people went to our local A&E department - I think it was part of a campaign to reduce accidents in the home. I can't remember how many people had ended up in casualty as a result of 'inappropriate use of vacuum cleaners' but I do remember that there were women as well as men!
I think a proper pump is probably much safer
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
OMG I will never look at my "Henry" in the same light again. !!
Xx
Mo
User
Lyn - Hahahahahahahahaha!
User
"Apparently", so it is suggested, it works quite well!
atb
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
My meeting with a different Quack at my Doctor's practice, went really well last week
He wrote a prescription for 56 days / 5mg per of Cialis (only given 28 days last time). He did discuss the cost versus Viagra, but said because I've had a prostatectomy, I was perfectly entitled to it and that he would want it (v- Viagra) if he was in my shoes. All fine and dandy!
However, a visit to the Pharmacist changed that! He only had 28 days supply, which he gave me and said he'd give me the balance the next day!
Next day,Pharmacist - "sorry I haven't got your Cialis I wont get it until next month"
Me "Why? You said you'd have it for me!"
Pharma - "We get stock allowances each month which we have to justify and I've used all mine up. It's meant to prevent us from selling it abroad at a huge profit. Could you come back next week I should have a packet for you then!
I've never encountered anything like this before! Is this normal? Has anyone else experienced these issues with their Pharmacist??
User
Sort of.
I find it hard to believe that John is the only patient in the practice that needs Viagra to overcome PCA treatment yet it seems that the chemist next door to the GP's rarely has enough to complete the prescription if we take it straight in there.
We are often asked to return next day.
Actually, I suppose now I've seen your post it makes a sort of sense. Other men are probably given Viagra for ED other than as a result of PC and if, as you say they have to justify their output, we've probably been unlucky enough to go in once his stock is cleared
John hates going in there anyway after our first encounter with the pharmacist who came out into the shop to discuss the tablets with us while there were other people around.
Edited by member 05 Oct 2015 at 18:54
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
User
Thanks Sandra,
I live in fairly Central London and have a choice of 6-7 Pharmacists within a 10 min walk of my house. I used to use the Pharmacist next door the the surgery, but they kept losing my prescription!
I do like my current Pharmacist and have a good relationship with him, so I'm reluctant to change! It's just a bit boring to only be able to have my prescription fulfilled at the third time of asking!
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Once we all change over to the new prescription system this should no longer be a problem as the pharmacies will see immediately what stock they need to order
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Lyn i know my earlier post was taken with a pinch of salt in some quarters but 3 months after robotic surgery i am still getting and maintaining erections without any difficulty, i am lucky i know that and long may it continue.
I have stepped back from posting as i would hate anyone to think that i was or am gloating, this is so far from the truth, like i say for whatever reason i am back to full sexual intercourse.
I am still taking 5mg of Cialis on a daily basis and have no side effects from them and i think we are all different in how the tablets react to the individual.
My Gp has been great and very supportive and haven't had to fight for any prescriptions, again postcode lottery.
I hope my post has not offended anyone
Gary
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Top news Gary!
Please carry on posting, we are seemingly a mixed bag of experiences and outlooks on here! It's good to have postings that are good as well as the bad and ugly. I'm really genuinely pleased for you!
Curing the cancer was / is my priority, with my treatment finished and seemingly a success, I only have ED to focus on! Having read many posts on the subject I'm encouraged that I will recover fully! So thank you for sharing!
Why are you still taking the Cialis?
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Taking the Cialis may now be a physiological thing, because something is working and working well i have decided to continue with the 5mg for another month just in case.
I did have minor side effects when i started taking them but they have now gone so i decided to continue until my prescription runs out then i will be on my own so to speak
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Originally Posted by: Online Community MemberLyn i know my earlier post was taken with a pinch of salt in some quarters but 3 months after robotic surgery i am still getting and maintaining erections without any difficulty, i am lucky i know that and long may it continue.
I have stepped back from posting as i would hate anyone to think that i was or am gloating, this is so far from the truth, like i say for whatever reason i am back to full sexual intercourse.
I am still taking 5mg of Cialis on a daily basis and have no side effects from them and i think we are all different in how the tablets react to the individual.
My Gp has been great and very supportive and haven't had to fight for any prescriptions, again postcode lottery.
I hope my post has not offended anyone
Gary
Yes, you were one of the 2 people I referred to, the other man later saying that he was having some difficulty. I think it is great that you have recovered so well and I don't think you should avoid posting at all. My concern is to keep reminding the other guys that you are in a tiny minority and that they shouldn't see themselves as 'failing' because your recovery has been so remarkable. Nor should men start thinking 'everyone else can' when they really mean you. Research like EPIC indicate that less than 10% of post-RP men can get an erection unaided at the 12 month mark although rather more (80%) can get an erection with chemical or mechanical assistance. Unsurprisingly, the urologists reported rather better results than the patients did but John's uro's view was that the men lie to their uro and tell the truth on the questionnaire (or the wives / partners fill in the questionnaire ... I always complete John's for him :-0 )
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Update.
After my original post in September, I restarted my 5mg of daily Cialis.
The side effects of aching limbs at night being compensated by waking up most mornings with at least a semi-erection and sometimes a usable one.
Over the past month, I have played around with my dose with some surprising and almost illogical results.
If I don't take Cialis for a few days my penis shrinks and I'm unable to get any life into it at all!
Taking 10-15mg taken gives absolutely no sign of an erection whatsoever (I haven't even bothered with 20mg) in addition, something that may interest Allison from one of her posts, despite being fully continent, I do get the odd leak when I take 10mg plus, which does tie in with Eli Lilly's literature about relaxing the bladder.
So back to 5mg daily which gives me a at least a semi without any stimulation, aching / painful limbs and muscles especially in my legs / ankles and the occasional reflux.
I have my first appointment with an ED Consultant later this month, I'll let you know the outcome. In the meantime if anyone has any advice to give me, gratefully received.
All in all, at only 9 mths post op, I do consider myself at the lucky end of the spectrum, but still a long way to go!
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Hi Pablo
I'm coming up to 8 months. You know I'm on zero meds at all - just the pump and injections. I have not had a single natural stir yet even when being stimulated . I recently tried 50mg Spedra for 8 days with no results . However what you are saying is kind of what my hospital is getting at maybe . If you don't take the daily Cialis then no erections. I still use the pump every day and get a useable erection but with no side effects . I hate the flushed face stuffy nose and indigestion . I'll stick to the pump thanks and try to get the Caverject dose just right for an occasional nice night.
I read a post from an American woman yesterday whose husband is exactly 2 years post - op . And guess what . He woke her up the other night fully functioning and a good time was had . So there IS hope guys
Best wishes mate
Chris
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Pablito has anything been given to you for the occasional reflux,such as Omeprazole for instance?
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Hi Sandra, the short answer is no, it is only occasional and I don't like taking drugs unless absolutely necessary.
At the moment I take 2.5mg Ramipril which is a low dose for Hypertentsion and of course 5mg Cialis.
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I note that Tadalafil (Cialis) is on the NHS England list of 10 drugs with "Low Clinical Value" and is to be reviewed :-((
See attached link for the full story
http://www.bbc.co.uk/news/health-39413915
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God I hope they don't stop it !! Took me a year to get it. My Uro still insisted that research didn't back up its use or efficacy. He implied I was getting a psychological benefit only. El and I nearly went mad at him but just took the prescription.