Ongoing lack of libido - - Page 4Sex and relationships - Prostate Cancer UK Online Community

User

Posted 25 Sep 2016 at 19:40

The bad breath is very strong unfortunately and he does have an odd taste in his mouth it has improved slightly with the steroids but is still there I thought it had something to do with him not eating enough and have been getting very frustrated with his refusal to eat he is eating now but not really enough. My son has also commented on it and said to me how revolting that smell is. I think with treatment he will be feeling much better the doctors have said it is treatable although they havent said what it is yet or how they are going to treat him I suspect his current illness is either that the prostate cancer has spread even though we were told he was cured or that he has lymphoma we are just waiting to know.

Thank you for answering some of my question.

User

Posted 25 Sep 2016 at 21:12

Originally Posted by: Online Community Member

I actually think the moderator should close this thread as quite frankly some of the comments are unacceptable. I've no idea what any new person would think.

That might happen on Monday Brian.

There have been other partners previously who have shared frankly, and with some dark humour, what they have needed to do to get through. They too were treated and judged harshly by those who had not a clue, not you I hasten to add! I have given 24/7 care to a partner, so I have an idea of what it is like. You, and most others are constructive and try to help, not condemn.

atb

dave

Hi Dave hope you are well

In my career and personal life I have seen many people who are caring 24/7 for people they love and also those who work in the care industry who may not have any emotional attachment to they people they care for.

I understand how extremely difficult the caring role can be. In fact at last legislation has also recognised the difficulties carers face. However, I don't wish to get involved in a debate about people's posts on this thread but felt I had to comment on some of what I read, as imo, it had started to become quite

vitriolic which is disappointing.

I also hasten to add that your posts were very supportive as always

Bri

User

Posted 27 Sep 2016 at 10:14

Hi everyone,

I'd like to give everyone a gentle reminder about the house rules for the community.

Our house rules are 'be supportive', 'be kind' and 'help us keep the community peaceful':

http://prostatecanceruk.org/get-support/using-the-online-community#house-rules

We don't want to start locking threads and issuing warnings to people about their behaviour so please can I ask for everyone to be considerate to each other and respect differing opinions.

Best wishes,
Carol

Digital Manager
Prostate Cancer UK

Edited by member 27 Sep 2016 at 10:22 | Reason: Not specified

User

Posted 27 Sep 2016 at 12:39

" We don't want to start locking threads and issuing warnings to people about their behaviour so please can I ask for everyone to be considerate to each other and respect differing opinions. "

____________________________________________________________________________________________________

You can indeed. Thanks for the timely reminder. Unfortunately we are only human and sometimes our own situations spill over into a conversation and touch raw spots.

I'm sure we'll all quieten down a bit and do what we do best - Look out for each other !!

******

Edited by member 27 Sep 2016 at 15:01 | Reason: Not specified

We can't control the winds - but we can adjust our sails

User

Posted 27 Sep 2016 at 22:42

Hi BW

I think in terms I understand thr moderator post means the ref has given the thread a drop ball and some of us a yellow card!

In the true spirit of things I reckon that is fair.

I said to a good friend of mine yesterday "sometimes we need to remember our common enemy is PCa not each other.

Atb

User

Posted 08 Oct 2016 at 21:32

Seems to me BW has been open , honest and yes expressive about the way she feels - good on her . Likewise , so have some of the replies . At the end of the day whether sufferer or carer we are all trying to cope with a sh**y scary disease .My wife copes by not talking about it , either the lack of sex , or the continued incontinence which is much more of a frustration for me , despite the fact that I'm back playing footy , going to the gym , cycling , running etc . We've a sort of understanding , sort the peeing and then sort the sex .We still do things together still kiss and cuddle , but even with the pump our attempts at sex have been a flop - literally . Ciallis gave me aches and pains and severe headaches , so that only lasted a week . Then back to Viagra . Does it work ? Not sure - I've usually fallen asleep . But it's so good to wake up knowing I'm still alive and still in a loving relationship with my wife and family despite our problems .
Difficult I know but try and keep the spirits up - if nothing else

User

Posted 08 Oct 2016 at 22:40

Alan,

How long did you try the Cialis for?

When I started with Cialis, it gave me severe calf ache and headaches for about 2 - 3 weeks. The pain would keep me awake and I was taking ibuprofen and the other painkiller.

After about 2 to 3 weeks, it seemed my body got used to it, the pain stopped, the cialis did its bit.

I had read about the potential benefits of the Cialis so I was prepared to endure the pain and discomfort for, I don't know, a couple of years or so!

Seriously, if you only gave it a week, it might benefit you to try it again for longer? My pain was worth it.

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

Posted 09 Oct 2016 at 17:10

Spoke to my Nurse specialist who advised me to knock off the Ciallis , so I did . Immediately felt better . I've my next O/P appt in a couple of weeks time so I'll be asking a few more questions .

With hindsight , although at the time it seemed good that the Consultant and team were positive about outcomes , I think their optimism re. recovery for sexual function and continence was over the top and created false expectations for me . A more realistic approach would not have put me off the op ,but I guess would have helped me in terms of the frustration I feel . Like others I've been told a few times ' it's early days '.No definition of whats early and whats late .

User

Posted 09 Oct 2016 at 17:50

Originally Posted by: Online Community Member

Spoke to my Nurse specialist who advised me to knock off the Ciallis , so I did . Immediately felt better . I've my next O/P appt in a couple of weeks time so I'll be asking a few more questions .

Hi Alan,

You appear to have had your prostatectomy in or around April 2016? Early days is a subjective term. It is often quoted that your recovery will be as good as it gets at the 2 year post op mark. If that were the case, then at 24 months, the recovery process in your body shuts down, and that is it. What recovery you have made at 24 months is what you will have to live with for the rest of your days. I am 3 years and 6 months after RRP, still improving. So the 24 month rule is not necessarily true for everyone.

Fortunately I did not read the bit that said I had to stop improving at 24 months! The bits I read that said what I had to do, and when I did it found it did not work, I went and did my own thing, and that worked.

The only certainty about any man having Pca, and dealing with it, and recovering from it, is that it affects everyone uniquely. Despite all men having the same basic "kit" or "bits", the after effects are unpredictable. Until you have it, until you are treated for it, until you try the various meds, and recuperative techniques, no one can predict how you will recover or respond to whatever. How much of the is down to you, your attitude and stubbornness, I don't know.

If you take from this post one thing, take that you are unique, until you try something you will not know how you will react or respond.

It's up to your if you persevere with meds. Cialis gave me sleepless nights for quite a while, several weeks, but having overcome the initial aches and pains, and my body becoming accustomed to it, I am glad I persevered. Viagra had no effect for me for several months.

I wish you well, but you really are early days, still.

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

Posted 29 Oct 2016 at 21:43

Hi,

I totally understand your frustration. I feel guilty because I miss my sex life and the intimacy of being close to my husband. Surely I should just be grateful that he is now Cancer free? My husband keeps apologising but I just want him to think of other ways we can enjoy being intimate. He looks very disapproving when I suggest a vibratory. We have tried a pump with no success and will ask about other options at his next appointment in November. He has lost his smell since his prostate as been removed, has anyone else noticed this change in their men?

User

Posted 29 Oct 2016 at 22:30

When you say you have had no success with the pump, what do you mean? Is he using it daily to keep the blood flowing and if so, does he get enlarged in the tube? Is it just using it for penetration that you are finding difficult?

Problems with the pump are almost always down to technique - we will try to help you if you can explain when or what goes wrong

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

User

Posted 30 Oct 2016 at 18:58

Hi Lynn

I am really having to persuade him to use it daily to help the blood flow. The few times we have used it to attempt intercourse have been awful. The look of his Penis makes me go cold, I find it a real turnoff. I also don't like all the gel he puts on it and it's not hard enough. He won't let me help with the rings and says he finds it painful. Any suggestions would be welcome thanks.

User

Posted 30 Oct 2016 at 19:37

Hi Karen
Have a read of the " erecting the erection " post which many men have Inputted to. It's pretty heartbreaking for both partners. My pride and joy of 48 yrs was reduced to something I barely recognized post op. But I persevered and persevered with the pump and still use it daily even 16 months on. I have pushed and pushed my own appointments and recovery to get it sorted out. It helps if you were a loving intimate open-minded couple before the op. My wife and I had zero problems keeping things active , despite the fact my erection was missing. I welcomed toys with open arms haha. All my dreams come true. You don't say how long since treatment ??
Things will never be quite the same , but we are now managing penetration whenever we want using a daily dose of Cialis 5mg although I had to fight to get it prescribed. I hope you can get through this together. You need to be a team. We laugh because in reality we are having far more fun in the bedroom than most couples we both know who have zero health issues. It can be done with an open mind

User

Posted 30 Oct 2016 at 19:41

I think if you find it a turn-off he is probably best to stick with the therapeutic use for now. John's ED nurse told him to do it 5 times, 3 times each day so that was morning when he woke up, evening when he got in from work (before his shower) and then at bed time. It seemed a drag and I had to bully him sometimes but it paid off in the end as he got natural erections back about 3 years post op.

If it isn't hard enough for penetration then he isn't using a tight enough ring - it usually causes numbness rather than pain! But leaving the rings to one side and just using the pump on its own is perhaps best strategy for the time being.

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

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