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9Weeks Post RP Check

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User
Posted 25 Jul 2022 at 12:18

I finally had my telephone consultation this morning with the Consultant. Suffice to say, he was so abrupt and I sensed he could not wait to get rid of me. The whole thing lasted 3minutes. I have been waiting for 9weeks since my surgery and it was all over in a jiffy. 

I asked him about my erections, he said speak to the erections people. I asked him about margins (even though I don't really know what it means, but I have seen that term on here), he just replied "Clear Margins, your margins were clear" - Anyone on here know what that means? He also said my Gleeson score remained at 3+4. He said go and do another PSA Test.

I accept, these men and women are under severe pressure, but just the telephone consultations just feels like a conveyor belt sadly!

User
Posted 25 Jul 2022 at 12:18

I finally had my telephone consultation this morning with the Consultant. Suffice to say, he was so abrupt and I sensed he could not wait to get rid of me. The whole thing lasted 3minutes. I have been waiting for 9weeks since my surgery and it was all over in a jiffy. 

I asked him about my erections, he said speak to the erections people. I asked him about margins (even though I don't really know what it means, but I have seen that term on here), he just replied "Clear Margins, your margins were clear" - Anyone on here know what that means? He also said my Gleeson score remained at 3+4. He said go and do another PSA Test.

I accept, these men and women are under severe pressure, but just the telephone consultations just feels like a conveyor belt sadly!

User
Posted 25 Jul 2022 at 15:20

Hi, sorry to read of your experience. Sadly it's not the first time I've seen this sort of thing on here.

As far as erections go, I would push for a referral to the ED department as soon as possible, although in some areas it's easier said than done. And I would recommend a vacuum pump too, even if it's an Internet purchase. 

As for margins,  the word "clear" is good news as it is an indication of whether cancer cells were potentially left behind. Hopefully you will get a copy of the letter sent to your GP confirming this.

Good luck with your recovery. 

Kev.

 

 

User
Posted 25 Jul 2022 at 15:53
Good advice above and yes yes yes get a vacuum pump asap even if from Ann Summers. You should use it 10 to 15 minutes at least 4 times per week before you sort out what drugs or injections you may need from GP or clinic. It’s vital to keep him healthy ok
User
Posted 26 Jul 2022 at 00:04

Sounds like you had a great outcome if margins clear and no upgrade in Gleason score.

Do you know if any nerve bundles were spared? If so your doctor may prescribe you a low dose PDE5 inhibitor like tadalafil or viagra to see if that helps….it can accelerate healing in the area etc But take professional guidance on this from your doctor just in case there are other considerations in terms medical history etc

I suspect you with be on 3 monthly PSA tests for a year or so and if they keep coming back super low or undetectable then happy days :-)

Keep us posted and best of luck with your recovery.

simon 

 

User
Posted 26 Jul 2022 at 06:23

We had the same, got told margins were negative, not been told if the Gleason score got worse. OH is being looked after by a ED nurse.

 

User
Posted 26 Jul 2022 at 10:27

Gee_Baba

First of all, look on the bright side. If your consultant had little to say, that is probably very good news. Likely, you will have another consultation (if we may call it that) in 2-3 months and between now and then you will have learned a lot. Next time, be prepared. If it is the same consultant, don't be shy to say you felt rushed last time.  These people are not deitys. Prepare a list of questions and anything else you wish to say and have it in front of you, on paper. If he/she doesn't ask if you have any questions, then tell him/her that you have some and you need them addressed. And if you don't understand the responses, don't be afraid to say so and ask for further explanation. No question is too simple and you may find that by drawing the consultant into conversation, he/she may become more open and responsive.

Good luck with your recovery,

Peter

User
Posted 26 Jul 2022 at 12:13

Originally Posted by: Online Community Member
If you want a professional pump and rings that can allow full sex , then you are looking at £180 like my Somaerect Response 2. You may be able to get it on prescription but as it is at the moment you can’t even see a GP for like a month. I guess ED clinics are non-entities too.
The key is to be using a pump just for exercise. Put him in , pump him erect and then just hold , and repeat etc ! I’m still using a pump purely for exercise 7 yrs on. I use it when I’m shaving. I’m utterly certain that’s why I’ve retained visual and actual penile health / activity. Look at the website Lovehoney. It’s really good and you could get a cheap pump for £10.

On your advice, I have ordered Vacurect Pump a bit pricey @ £231 felt no point in going down the NHS route. I am really grateful, as I thought ED was part and parcel of Prostate surgery and one should just be grateful to be alive. This forum has been a great help, a friend of mine had his surgery done just over a year ago and the advice was to do nothing and the acceptance that things will no longer work down there! Men typically have issues discussing ED, and I also accepted my fate up until now!

Thanks once again!

User
Posted 26 Jul 2022 at 13:24
Quote:
Quote:

 

 

The consultant confirmed nerves were sparred on both sides. I was also prescribed 100mg of Viagra, (8 tablets monthly). So far, I used 2 (1 week apart), nothing happened. Erection of some sort, but not enough to have penetrative sex. I have ordered the pump and hoping that will improve things. I will be doing a blood test tomorrow, PSA and for my testosterone levels.

Thanks.

 

Viagra (Sildenafil) only lasts a few hours. For rehabilitation you should ask for daily Tadalafil it has a long half life and you build up a constant level in your blood stream. It's thought to constantly increase blood flow to repair the nerves.

Cheers

Bill

User
Posted 02 Aug 2022 at 17:42
You have had nerves spared on both sides. It is the best outcome that you could hope for in terms of ED. Most guys on here in that position will go on to recover some form of sexual function. When that happens you need "the old fella" to be in the best condition possible. The return of function can take some time, so in the interim you really need to get to work with that pump. Think of it as " genital physiotherapy"

As the old saying goes " use it or lose it".

User
Posted 02 Aug 2022 at 20:00

It's definitely something you want to experiment with on your own. You don't want pressure to perform.

If you aren't getting natural erections youah need to use the pump several times a day.

Dave

User
Posted 05 Aug 2022 at 01:59

Fantastic news! Anything with a less than sign <  in front of it in terms of PSA result is top notch as means undetectable!  Break open the bubbly 🍾🍻

User
Posted 10 Aug 2022 at 19:39

Don't despair Gee. It takes a bit getting use to but it's soon just like brushing your teeth (and you need to be nearly as regular as brushing your teeth). The hardest part is getting used to the rings and sliding them off the pump on to your penis. Hopefully you have a selection of rings to play with to find one that is comfortable and holds the erection. Definitely need to practice solo first to avoid disappointing the OH. Chris

User
Posted 10 Aug 2022 at 22:53

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
Did you put the restriction ring on your penis before removing the pump?

LynEyre, The ring was on the pump.

 

Thanks.

Okay, Ithink you are a bit confused about how to use the pump. To keep your penus healthy, you inflate and deflate repeatedly - say 5 times, three times a day. You leave the ring on the tube. To try to have penetrative sex, you need to have practised inflating and deflating, then practise inflating and sliding the ring off the tube onto the base of your penis. You will get a better result by trimming your public hair quite short, and using plenty of lube. When you use the ring, never keep it on for more than 30 minutes. 

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

Show Most Thanked Posts
User
Posted 25 Jul 2022 at 15:20

Hi, sorry to read of your experience. Sadly it's not the first time I've seen this sort of thing on here.

As far as erections go, I would push for a referral to the ED department as soon as possible, although in some areas it's easier said than done. And I would recommend a vacuum pump too, even if it's an Internet purchase. 

As for margins,  the word "clear" is good news as it is an indication of whether cancer cells were potentially left behind. Hopefully you will get a copy of the letter sent to your GP confirming this.

Good luck with your recovery. 

Kev.

 

 

User
Posted 25 Jul 2022 at 15:53
Good advice above and yes yes yes get a vacuum pump asap even if from Ann Summers. You should use it 10 to 15 minutes at least 4 times per week before you sort out what drugs or injections you may need from GP or clinic. It’s vital to keep him healthy ok
User
Posted 25 Jul 2022 at 17:45

Originally Posted by: Online Community Member

Hi, sorry to read of your experience. Sadly it's not the first time I've seen this sort of thing on here.

As far as erections go, I would push for a referral to the ED department as soon as possible, although in some areas it's easier said than done. And I would recommend a vacuum pump too, even if it's an Internet purchase. 

As for margins,  the word "clear" is good news as it is an indication of whether cancer cells were potentially left behind. Hopefully you will get a copy of the letter sent to your GP confirming this.

Good luck with your recovery. 

Kev.

 

 

Thanks a lot Kev!

User
Posted 25 Jul 2022 at 17:51

Originally Posted by: Online Community Member
Good advice above and yes yes yes get a vacuum pump asap even if from Ann Summers. You should use it 10 to 15 minutes at least 4 times per week before you sort out what drugs or injections you may need from GP or clinic. It’s vital to keep him healthy ok

I will take your advice and order a vacuum pump. Sorry to be a pain, just wondering if there is one you would recommend? I have just had a look, it seems like a minefield out there, however, one thing that is clear is the need to start penile rehab ASAP. I erroneously thought penile rehab started on a sliding scale, i.e. you started with tablets, used for 8weeks, then move on to pumps and then injections.. It seems the pump could be used in conjunction with the tablets.

Thanks once again.

User
Posted 25 Jul 2022 at 18:55
If you want a professional pump and rings that can allow full sex , then you are looking at £180 like my Somaerect Response 2. You may be able to get it on prescription but as it is at the moment you can’t even see a GP for like a month. I guess ED clinics are non-entities too.

The key is to be using a pump just for exercise. Put him in , pump him erect and then just hold , and repeat etc ! I’m still using a pump purely for exercise 7 yrs on. I use it when I’m shaving. I’m utterly certain that’s why I’ve retained visual and actual penile health / activity. Look at the website Lovehoney. It’s really good and you could get a cheap pump for £10.

User
Posted 25 Jul 2022 at 20:29

I couldn't get a pump at first on prescription so got one from Lovehoney and then another from amazon. I dropped the main tube and broke the first one. Both had the squeezy ball type of pump which wasn't great and soon split. Then I found a scissor or trigger type pump separately (just the actual pump)which was more efficient but that also broke after about a year. I recently bought a very cheap (£12) brake bleeding kit for bleeding car brakes just for the vacuum pump. The connection for the tube to the cylinder is the same. The vacuum is no stronger than the others and it's robust. It has a release button to let the air back in so is just as safe. I have the nack of stretching a ring over the tube of the cheapy and then on to the penis but that's not easy. Also I can pump and release a few times to get going and then remove the comfort seal, put a ring on my penis and then fit the tube over the top, get a good seal then pump it up with the ring on. That is very effective but have to be careful of bulging near the base. If in doubt stop, adjust and start again.
Being an engineer I am very practical and believe by being careful its safe for me but not in any way medically trained so just saying what has worked for me.
I eventually got a somarect on prescription but still use the cheapy more. One advantage is it is light and can be used standing at the wash basin while standing or in the bath or shower. Also good for travelling.

Good luck and all the best
Cheers
Bill

Edited by member 25 Jul 2022 at 20:34  | Reason: Not specified

User
Posted 25 Jul 2022 at 20:40

It might we worth trying to get in touch with the Specialist Nurse. He/she should be able to spend more time with you and answer any other questions you might have. Mine wrote to my GP requesting a prescription for a vacuum pump.

User
Posted 26 Jul 2022 at 00:04

Sounds like you had a great outcome if margins clear and no upgrade in Gleason score.

Do you know if any nerve bundles were spared? If so your doctor may prescribe you a low dose PDE5 inhibitor like tadalafil or viagra to see if that helps….it can accelerate healing in the area etc But take professional guidance on this from your doctor just in case there are other considerations in terms medical history etc

I suspect you with be on 3 monthly PSA tests for a year or so and if they keep coming back super low or undetectable then happy days :-)

Keep us posted and best of luck with your recovery.

simon 

 

User
Posted 26 Jul 2022 at 06:23

We had the same, got told margins were negative, not been told if the Gleason score got worse. OH is being looked after by a ED nurse.

 

User
Posted 26 Jul 2022 at 09:31

Originally Posted by: Online Community Member

We had the same, got told margins were negative, not been told if the Gleason score got worse. OH is being looked after by a ED nurse.

 

I noticed that you haven't posted your husband's first post-op PSA reading, DW. What was it? 

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

User
Posted 26 Jul 2022 at 10:27

Gee_Baba

First of all, look on the bright side. If your consultant had little to say, that is probably very good news. Likely, you will have another consultation (if we may call it that) in 2-3 months and between now and then you will have learned a lot. Next time, be prepared. If it is the same consultant, don't be shy to say you felt rushed last time.  These people are not deitys. Prepare a list of questions and anything else you wish to say and have it in front of you, on paper. If he/she doesn't ask if you have any questions, then tell him/her that you have some and you need them addressed. And if you don't understand the responses, don't be afraid to say so and ask for further explanation. No question is too simple and you may find that by drawing the consultant into conversation, he/she may become more open and responsive.

Good luck with your recovery,

Peter

User
Posted 26 Jul 2022 at 12:13

Originally Posted by: Online Community Member
If you want a professional pump and rings that can allow full sex , then you are looking at £180 like my Somaerect Response 2. You may be able to get it on prescription but as it is at the moment you can’t even see a GP for like a month. I guess ED clinics are non-entities too.
The key is to be using a pump just for exercise. Put him in , pump him erect and then just hold , and repeat etc ! I’m still using a pump purely for exercise 7 yrs on. I use it when I’m shaving. I’m utterly certain that’s why I’ve retained visual and actual penile health / activity. Look at the website Lovehoney. It’s really good and you could get a cheap pump for £10.

On your advice, I have ordered Vacurect Pump a bit pricey @ £231 felt no point in going down the NHS route. I am really grateful, as I thought ED was part and parcel of Prostate surgery and one should just be grateful to be alive. This forum has been a great help, a friend of mine had his surgery done just over a year ago and the advice was to do nothing and the acceptance that things will no longer work down there! Men typically have issues discussing ED, and I also accepted my fate up until now!

Thanks once again!

User
Posted 26 Jul 2022 at 12:21

Originally Posted by: Online Community Member

Sounds like you had a great outcome if margins clear and no upgrade in Gleason score.

Do you know if any nerve bundles were spared? If so your doctor may prescribe you a low dose PDE5 inhibitor like tadalafil or viagra to see if that helps….it can accelerate healing in the area etc But take professional guidance on this from your doctor just in case there are other considerations in terms medical history etc

I suspect you with be on 3 monthly PSA tests for a year or so and if they keep coming back super low or undetectable then happy days :-)

Keep us posted and best of luck with your recovery.

simon 

 

The consultant confirmed nerves were sparred on both sides. I was also prescribed 100mg of Viagra, (8 tablets monthly). So far, I used 2 (1 week apart), nothing happened. Erection of some sort, but not enough to have penetrative sex. I have ordered the pump and hoping that will improve things. I will be doing a blood test tomorrow, PSA and for my testosterone levels.

Thanks.

User
Posted 26 Jul 2022 at 13:24
Quote:
Quote:

 

 

The consultant confirmed nerves were sparred on both sides. I was also prescribed 100mg of Viagra, (8 tablets monthly). So far, I used 2 (1 week apart), nothing happened. Erection of some sort, but not enough to have penetrative sex. I have ordered the pump and hoping that will improve things. I will be doing a blood test tomorrow, PSA and for my testosterone levels.

Thanks.

 

Viagra (Sildenafil) only lasts a few hours. For rehabilitation you should ask for daily Tadalafil it has a long half life and you build up a constant level in your blood stream. It's thought to constantly increase blood flow to repair the nerves.

Cheers

Bill

User
Posted 26 Jul 2022 at 18:49

Thanks a lot, I will speak to my GP about changing my medication.

User
Posted 02 Aug 2022 at 16:14

My Pump (Vacurect deLuxe) was delivered this morning. The easiest thing was ordering it from Amazon, now it is here, the thought of using it fills me with dread 😟. I could not even bring myself to open the package, and at moment feeling sorry for my self at how I have gone from a virile, jack the lad to one now reliant on a pump to have an erection. I have just dumped the package unopened in the cupboard.

The focus has been getting rid of the cancer, and most people who hear you have had a successful op, do not know the half of it - the ED issues - I think more needs to be done to understand the aftermath of RP!

User
Posted 02 Aug 2022 at 17:42
You have had nerves spared on both sides. It is the best outcome that you could hope for in terms of ED. Most guys on here in that position will go on to recover some form of sexual function. When that happens you need "the old fella" to be in the best condition possible. The return of function can take some time, so in the interim you really need to get to work with that pump. Think of it as " genital physiotherapy"

As the old saying goes " use it or lose it".

User
Posted 02 Aug 2022 at 19:45

I guess it is me just being a berk and feeling sorry for myself - looking at the negatives, the loss of spontaneity and worried whether the little man would arise from its 10week slumber. I think, I will try it solo when I am home alone and see how it goes. I just cannot bring myself to tell my lady that I have a mechanical device to aid me... 

Thanks music_man

User
Posted 02 Aug 2022 at 20:00

It's definitely something you want to experiment with on your own. You don't want pressure to perform.

If you aren't getting natural erections youah need to use the pump several times a day.

Dave

User
Posted 04 Aug 2022 at 18:01

I will be seeing the andrology team face to face on the 11/8 (next week), so hopefully will be positive. I don't know what to expect. Suffice to say he requested I did a blood test for testosterone, collected the form from my GP Surgery, the test included the PSA as well as other blood work. After 1 week, still waiting for the testosterone result, however the PSA result post 9weeks is <0.1, is that a good sign?

User
Posted 04 Aug 2022 at 19:01

OH will get his 1st result in a telephone conversation 5th Sept as the doc prefers to wait 3 month after the op. Will update once all questions answered as we also have not been told if there were any other changes

User
Posted 04 Aug 2022 at 19:08

Originally Posted by: Online Community Member

OH will get his 1st result in a telephone conversation 5th Sept as the doc prefers to wait 3 month after the op. Will update once all questions answered as we also have not been told if there were any other changes

 

It seems myself and your OH had our surgeries on the same day (May 19th)? I have had 2 telephone consultations 1 with the andrology team and the surgeon. However will be seeing the andrology team in a week's time.

User
Posted 05 Aug 2022 at 01:59

Fantastic news! Anything with a less than sign <  in front of it in terms of PSA result is top notch as means undetectable!  Break open the bubbly 🍾🍻

User
Posted 05 Aug 2022 at 06:12

Yes you did. Had 1 meeting with Andology, got a pump on loan to see if OH likes it (he does) so at the next meeting end Sept he will get his own. As he is nearly completely dry now (just using the smallest pads available when we go out) we will then return all the pads the hospital supplied us with (already agreed with the nurse) and see what her next ED treatment option is (no nerves spared). 

User
Posted 05 Aug 2022 at 11:10

Originally Posted by: Online Community Member

Yes you did. Had 1 meeting with Andology, got a pump on loan to see if OH likes it (he does) so at the next meeting end Sept he will get his own. As he is nearly completely dry now (just using the smallest pads available when we go out) we will then return all the pads the hospital supplied us with (already agreed with the nurse) and see what her next ED treatment option is (no nerves spared). 

10Weeks on super dry in the day, but night time is another story, I have to use the pads. I think my issue is lack of discipline and focus on my part. I am not very good with routine, so have gone weeks without doing the pelvic floor exercise. I promised myself I would not eat and drink water after 7pm, even that I could not manage. I shelled out a small fortune to buy a pump, still unboxed in the closet. I have only used the tablets 2ce, did not work so just left it. It does not help as my wife is at the onset of menopause, so she is not really bothered in that regards. I just don't want this condition to consume me and take over my life 😊!

User
Posted 10 Aug 2022 at 11:41

Finally summed up the courage to use my vacuuerect pump. Suffice to say it was a disaster😭. I got some erection, however soon I took off the pump, my erection died with it. I wonder if I am doing something wrong? Thankfully I was in solo mode and my lady was not waiting for any action!

User
Posted 10 Aug 2022 at 12:23
Did you put the restriction ring on your penis before removing the pump?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Aug 2022 at 12:52

Gee, Google vacurect and select videos, there are a number of you tube videos and one of a guy actually using it. It does look a bit of a faff compared to the soma range of pumps.

I managed to get a testicle trapped in a ring, not funny at the time but we laugh about it now.

Thanks Chris 

 

 

Edited by member 10 Aug 2022 at 12:53  | Reason: Typo

User
Posted 10 Aug 2022 at 17:57

Originally Posted by: Online Community Member
Did you put the restriction ring on your penis before removing the pump?

LynEyre, The ring was on the pump.

 

Thanks.

User
Posted 10 Aug 2022 at 18:00

Originally Posted by: Online Community Member

Gee, Google vacurect and select videos, there are a number of you tube videos and one of a guy actually using it. It does look a bit of a faff compared to the soma range of pumps.

I managed to get a testicle trapped in a ring, not funny at the time but we laugh about it now.

Thanks Chris 

 

 

Chris, I will check it out, thanks.

 

User
Posted 10 Aug 2022 at 19:39

Don't despair Gee. It takes a bit getting use to but it's soon just like brushing your teeth (and you need to be nearly as regular as brushing your teeth). The hardest part is getting used to the rings and sliding them off the pump on to your penis. Hopefully you have a selection of rings to play with to find one that is comfortable and holds the erection. Definitely need to practice solo first to avoid disappointing the OH. Chris

User
Posted 10 Aug 2022 at 22:53

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
Did you put the restriction ring on your penis before removing the pump?

LynEyre, The ring was on the pump.

 

Thanks.

Okay, Ithink you are a bit confused about how to use the pump. To keep your penus healthy, you inflate and deflate repeatedly - say 5 times, three times a day. You leave the ring on the tube. To try to have penetrative sex, you need to have practised inflating and deflating, then practise inflating and sliding the ring off the tube onto the base of your penis. You will get a better result by trimming your public hair quite short, and using plenty of lube. When you use the ring, never keep it on for more than 30 minutes. 

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

 
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