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Talking about sex - Sex,Relationships

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User
Posted 25 Jan 2016 at 14:48

Hi everyone


I’m Minal from the Health Information team. We know that some men find it difficult to talk about sexual problems after prostate cancer treatment. Therefore, we are producing some information to help men have these conversations and get the support and treatment they need.


I’d like to hear about your experiences of how you raised the subject with your doctor and/or a sexual partner and what they said. Please could you answer the following questions.


- How did you tell your doctor or a sexual partner about sexual problems after prostate cancer treatment?
- What did they say in response?
- Was there anything they said that was particularly helpful or unhelpful?
- Do you have tips for someone about to have these conversations?


Please comment below or you can contact me directly if you’d prefer: minal.smith@prostatecanceruk.org
You will be helping us to ensure that our information is as useful as possible for men with prostate cancer.


Thanks for your help.


Minal

User
Posted 05 Feb 2017 at 12:07

Hello ago Minal
we have spoken at length before about this subject I think . I'm 19 months post op and am passionate about the journey I have taken ( mostly driven by myself ) to return to as near full function as I can in my own individual case . I realise every case is different re nerve sparing etc.Im so passionate about this , that if I had the know how id set up a website that any man or woman could visit confidentially and purely discuss their PCA ED issues
Naturally it depends on a man's feelings towards sex pre op , and also how active he is sexually pre op.
From the word go we were offered all PCUK leaflets relevant to surgery and we read them at length. My wife and I were under no delusions that sex was going to be completely different from now on and a big struggle ahead . Luckily I'm in a marriage that has no shyness in the bedroom and we are very able to discuss our fears and problems about anything.
When I next saw surgeon I made it very very clear at the age of 49 that I wanted everything possible to be done to help me restore function post op . He was in full agreement and my team have been awesome in helping me , but boy do you have to push for appointments and prescriptions etc . My biggest anger arose from having to wait an entire year before being prescribed daily 5mg Cialis which had almost instant beneficial results. They stated the evidence wasn't proven but I think it was post code thing . I got it by stamping my feet and trying it myself , then bl****dy demanding they gave it to me or they were breaking their promise.
My GP in this area has been amazing and sympathetic and helpful in prescribing.
I speak to a lot of men I have met through this forum privately on the messaging system and by texting etc. Some of them are internally destroyed by ED problems despite being technically rid of the cancer.I particularly dislike comments such as " There are no erections in the graveyard " and " Dead men don't get erections " etc. I have heard this online and from friends and indeed from some health professionals !
Every man is different in their desires and I personally at the beginning of this journey felt id rather be dead with no erection , than endure a long life with no erection. I'm grateful of course now that people on this forum pulled me through that thinking and convinced me that life was worth living and that my relationship could even improve . They weren't wrong . But I was lucky I guess in that I have an active sex-life back with a useable erection. Its not the same , it never will be , but its good enough for us both . Unfortunately I have contact with people who aren't as lucky and even talk about ending it all they are so unhappy . Sorry if this a waffle but I would happily sit and chat to ANYONE about this and try and help them through it in any way possible , and actually I'm looking for a job .............

User
Posted 05 Feb 2017 at 13:44

Chris

You mentioned setting up a Web site such is your passion re ED.

Some members, sadly some no longer here, as I in the past felt the need to set up an alternative web site using a free forum - pro boards is fine. Really easy to set up with no need for IT expertise. It was a bit time consuming getting rid of those seeking just to advertise and or cause aggro but no big deal. One unexpected reward was coming into contact with a wide range of folks trying to help others. Although I've never tried setting one up from a mobile I would guess it's better done via a PC. Have a look into it and see if it grabs you. If so give it a go.

Ray


Ray

User
Posted 01 Mar 2024 at 09:58
Now we know that isn't true, no way would you have got an appointment with an actual GP!
Show Most Thanked Posts
User
Posted 25 Jan 2016 at 18:05
I have replied in full by email following my recent posts as this a hot topic for me.

But there are also many patients who do not have a partner. And no-one close they can turn to. They need help too.

I do not think I've seen a conversation where the patient does not have a partner.

It must be very lonely for them.

User
Posted 25 Jan 2016 at 19:55
Minal

I was told there would be the potential for sexual problems on the day I was diagnosed during a 30 minute meeting with my Uro/ onco nurse.

I was given lots of information so the ED etc did not come as a suprise to either me or my wife and like a lot of wives she told me being alive was the main priority.

Alot of things just seem to swing into action at our hospital. Before my op an appointment was already booked with the ED consultant.

Thanks Chris

User
Posted 05 Feb 2017 at 09:57

I was and still am single at the time of the operation in December 2015 and have ED which I was not so concerned about post op as surviving was top of the agenda. Had one sexual encounter since the op and now with a sympathetic partner. Sex is definitely different as is anything new and untested after 63 years so give yourself the time to adjust and learn. I went into that encounter with a negative approach and so it was negative but need not have been and it was to soon into the ED rehab treatment.

After the op the ED got worse and although time is a healer I seriously left it far to long and have to have rehab which is working. I feel that had I put my hand up six months earlier it would not have been the psychological problem it became. That said it is only something I now feel able to deal with after 4 clear psa tests since the op.

With that wonderful thing hindsight, I would urge a more proactive approach earlier and the belief that it can and will not become a problem. Perhaps each case is different but the positive approach is the better way to go earlier and know what you have to do about it sooner. As my rehab nurse said to me 'use it or lose it' and loser is not my middle name!  

User
Posted 05 Feb 2017 at 12:07

Hello ago Minal
we have spoken at length before about this subject I think . I'm 19 months post op and am passionate about the journey I have taken ( mostly driven by myself ) to return to as near full function as I can in my own individual case . I realise every case is different re nerve sparing etc.Im so passionate about this , that if I had the know how id set up a website that any man or woman could visit confidentially and purely discuss their PCA ED issues
Naturally it depends on a man's feelings towards sex pre op , and also how active he is sexually pre op.
From the word go we were offered all PCUK leaflets relevant to surgery and we read them at length. My wife and I were under no delusions that sex was going to be completely different from now on and a big struggle ahead . Luckily I'm in a marriage that has no shyness in the bedroom and we are very able to discuss our fears and problems about anything.
When I next saw surgeon I made it very very clear at the age of 49 that I wanted everything possible to be done to help me restore function post op . He was in full agreement and my team have been awesome in helping me , but boy do you have to push for appointments and prescriptions etc . My biggest anger arose from having to wait an entire year before being prescribed daily 5mg Cialis which had almost instant beneficial results. They stated the evidence wasn't proven but I think it was post code thing . I got it by stamping my feet and trying it myself , then bl****dy demanding they gave it to me or they were breaking their promise.
My GP in this area has been amazing and sympathetic and helpful in prescribing.
I speak to a lot of men I have met through this forum privately on the messaging system and by texting etc. Some of them are internally destroyed by ED problems despite being technically rid of the cancer.I particularly dislike comments such as " There are no erections in the graveyard " and " Dead men don't get erections " etc. I have heard this online and from friends and indeed from some health professionals !
Every man is different in their desires and I personally at the beginning of this journey felt id rather be dead with no erection , than endure a long life with no erection. I'm grateful of course now that people on this forum pulled me through that thinking and convinced me that life was worth living and that my relationship could even improve . They weren't wrong . But I was lucky I guess in that I have an active sex-life back with a useable erection. Its not the same , it never will be , but its good enough for us both . Unfortunately I have contact with people who aren't as lucky and even talk about ending it all they are so unhappy . Sorry if this a waffle but I would happily sit and chat to ANYONE about this and try and help them through it in any way possible , and actually I'm looking for a job .............

User
Posted 05 Feb 2017 at 13:44

Chris

You mentioned setting up a Web site such is your passion re ED.

Some members, sadly some no longer here, as I in the past felt the need to set up an alternative web site using a free forum - pro boards is fine. Really easy to set up with no need for IT expertise. It was a bit time consuming getting rid of those seeking just to advertise and or cause aggro but no big deal. One unexpected reward was coming into contact with a wide range of folks trying to help others. Although I've never tried setting one up from a mobile I would guess it's better done via a PC. Have a look into it and see if it grabs you. If so give it a go.

Ray


Ray

User
Posted 05 Feb 2017 at 18:01

I feel the need to answer this now that my husband can't. His 2nd urology appointment was with the consultant, having been seen by the registrar the first time when he was told it was PCa.

My husband asked what effect the treatment would have on our sex life as he was already having some problems with ED. The consultant - a man probably around the same age as my husband (mid 50s) said very casually 'Oh you don't need to worry about that because you'll lose all interest in sex anyway so it won't matter'. Then he moved on totally ignoring my husband's look of devastation.

I am still so angry about the total lack of empathy and the evil side of me thinks about whether that man will ever recall that comment if he ever finds himself in the same situation.   

The nurse who was present looked shocked at his response and did tell us afterwards that there were options to help but we then transferred over to an oncologist and it was never mentioned again. He did get some Cialis and Viagra from the GP but no real advice such as I've seen on this site on how best to use them.

User
Posted 05 Feb 2017 at 18:28

Rosy I just wrote you a massive reply and another post that may have helped others , but yet again this atrocious website just crashed as I was trying to send it. PCUK is offline more than online these days it seems.
I wanted to say sorry Rosy and thanks for posting x The rest I can't be bothered retyping quite frankly :-(

User
Posted 01 Mar 2024 at 08:57

Originally Posted by: Online Community Member
- How did you tell your doctor or a sexual partner about sexual problems after prostate cancer treatment?
- What did they say in response?

I put on my black leather posing pouch. Gyrated my hips and sang

"Let's talk about sex, baby

Let's talk about you and me

Let's talk about all the good things

And the bad things that may be."

The wife giggled.

The doctor struck me off his patient list.

Edited by member 01 Mar 2024 at 09:31  | Reason: Not specified

User
Posted 01 Mar 2024 at 09:58
Now we know that isn't true, no way would you have got an appointment with an actual GP!
User
Posted 01 Mar 2024 at 10:08

Originally Posted by: Online Community Member
Now we know that isn't true, no way would you have got an appointment with an actual GP!

👏👏👏😊

 

 
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