Bladder incontinence .

Hi Lucy lou, and a warm welcome to the forum, I am sorry to hear what you are both going through, though I  never had a prostatectomy, I am familiar with intimacy and incontinence issues.

As you say 6 weeks post surgery is not a long time for  recovery, which often takes between one and two years, but it's important you find out which, if any nerves were spared, ask your CNS,  Consultant,/surgeon or their secretaries, and if they're not cooperative go through PALS, as if the pudendal nerve, is damaged it, like all nerves going through a prostatectomy will experience trauma and  minor damage, and will Need stimulation to heal, which again takes time, maybe a year or more 

As for his incontinence during surgery you lose the two sphincter which have been controlling urine flow all your life, but there is a spare one, so to speak, which through his exercises can be trained to take over.

So there is light at the end of the tunnel my friend, it "just, " requires patience, exercise/stimulation teamwork, as it is a couples disease, and a little luck.

You are certainly not being selfish in wanting a little affection, I just wish one of your team at the hospital would have explained how to proceed following surgery to achieve the best possible outcome.

Could I suggest counselling, as your husband's attitude is not only making both of you unhappy, it's also going to impact his recovery, I hope this helps a little, and hopefully a few of the wives/partners will be along soon to share their experiences.

Eddie xx 

Hi Lucy Lou.

I had my RP nearly three years ago. One of the things I have learnt from the great people on this forum is that every man is different. That means there is no set timescale to get back to what we all aim for after RP. For me though, the operation went exceeding well; no real pain, just a bit of discomfort.

The after effects however left me devistated and really terribly depressed with no hope. At six weeks I was able to get around well but incontinence was bad. I was constantly looking for loos and also had purchased a plastic urine bottle, which was a godsend. I used that primarily at the end of any car journey before venturing out. I felt totally out of control of the situation. It wasn't until about 6 months until things started to improve and I started to feel more in control of my life. And it wasn't until many months after that I was able to really reduce the number of pads per day.

I think it was after a year that I was able to be pad free if I was indoors and maybe a short walks. I did, and still do, rely on washable Tena boxers and I did and still do rely on pads as well if I am doing manual work, going out for long walks, attending functions etc. I have for probably a year felt in total control, have accepted the situation and it does not worry me. Even now occationally I have an accident at night or when I am out without a pad. The Tena washable boxer shorts help no end but they are not a total answer.

The point I am making, is that some do not have any problem, for some it is a very long haul and for some it does not resolve itself at all. Also for some I know their story is far worse than mine. Hopefully  your DH's will be one of the lucky ones, but there is no knowing. You both however need to keep possitive and patient.

At six weeks I had a post op consultation with my Consultant and was given his opinion of the op and the results of the lab report on my prostate. If that is something which is not available for you then I would say you need to speak to the CNS and get that info one way or another. I have also had PSA tests every 3 months and speak to my CNS then (she is also avalable at any other time).

Regarding intamacy, it has been the same story for me really.  I still cannot perform adequately due to ED and I still have a great hang-up over that. I did have access to an ED specialist and was given a pump, which I find works but is bothersome.I have tried all the tablets without any benefit. Many men have howevr reported that self-injections have worked for them. So, I would see if you can have access to a specialist at some point. I had mine at about 4 or 5 months post. For me, although my DW is very supportive, I think it does affect cuddling too. because I feel a bit of a failure. So your DH may be finding that. 

Hello Lucy lou 

Thank you for your post - it's the right thing to do - you need to vent and this is the place to do it. You are not selfish at all. Your husband has been through major surgery and with surgery no one takes the time to explain the risks, side effects and the effect on your relationship.

I am a man, I still have my prostate but I can see it from your husband's point of view. From being the breadwinner and "man" he's been reduced to someone with no control over his urination and sexual feelings. He's upset and angry but doesn't realise it, and he's convinced now he should have gone down the HT/RT route but can't change that.

WE can't turn back time but things WILL get better, but he needs to work on this. His pelvic floor exercises are a "must" and he needs to adopt a positive attitude and realise that you are in this together - easier said than done.

As others have said - "It's early days yet" and he need to help himself. Might I suggest:

* For yourself - please do contact our Support Line on 0808 808 00 00 (8am to 8pm 7 days a week) the can give YOU plenty of help and support.

* For him, contact his team -they will be able to refer him to the continence team for further help.

* Do you have a "Maggie's" near you this is a cancer charity where you can call in, have a brew and chat your problems over - link Maggie's.

* I know he's probably not in the mood - but would it help him if he had someone to talk to other than you. I am happy to chat to him or if it would help he could have a Macmillan "Buddy" to chat things over with once a week - link Macmillan Buddies.

We are here for you - keep us posted as to how you get on. 

As for music the one song that has helped me is by Chumbawamba:

"I get knocked down, But I get up again, You're never gonna keep me down".

Best wishes - Brian.

Thank you Eddie, you have given me hope, this has been massive for us as a couple.

The hospital my husband is under has not been great, he was told " you have prostate cancer", by a surgeon, not his consultant, then told " sit outside the room, and read this", (a Macmillan book on prostate cancer, ) and come back in, in ten minutes, and let me know what you want to do.

We decided  we would go home to think about it. No nurse specialist was there, or rang, my husband had to call the hospital to ask, she rang him two days later. Dreadful.

Thanks again. 

Thank you. 

Thank you for your reply.

Hi Lucy lou,  I'm really sorry for my late reply, but if my post has helped, that is all the thanks I need my friend,  it's pretty disgraceful, but sadly not uncommon the way you've been treated by your hospital, too many times they assume we know enough about what's going on to make an informed decision on treatment, and not understanding how the emotional impact of a cancer diagnosis scramblles our thoughts as well, to expect anyone to make an informed decision  in 10 minutes fromreading a booklet is disgusting. can I ask, did you get to talk to your oncologist before deciding on surgery, and are you getting any support from urology with hubby's incontinence and a specialist nurse for his ED issues.  It's not unusual to not see your cancer nurse specialist CNS at your first appointment, and a wait of a day or so for a reply is normal, but keep in touch with her/him, they are your link to your team, and very helpful and supportive, but sadly overstretched.

Eddie xx

Hi, no, we never saw, or heard from an Oncologist, we were just told " his options" by the consultant who came into the room after my husband had so called read the Macmillan book, ( in ten minutes), and asked what he wanted to do. The options were,  radiotherapy with hormone treatment, however, he was told surgery would not be possible later if the need arose, radical robotic prostatectomy,  watch and wait , however, this wasn't advised, as his cancer was an intermediate  risk, if it was a low risk, he may have been able to do this.

The consultant he saw wasn't the person who operated on him, we found out it would be someone else when he received his surgical date.

My husband has spoke to the continence nurse, who has ordered more pads, and told him to carry on with pelvic floor exercises. 

He is due to have histology results in two weeks, which will be eight weeks post op, this will be done by telephone call , by a surgeon who didn't do my husband's surgery!  I hope my husband will be more settled knowing his results, whatever the results are. 

Thanks again.

That is appalling . You should ask for a face to face appt so you can have an open and honest discussion . Over the phone seems very insensitive. we had an awful start to my OH journey with PC.  But it seems to be a lot better since I explained to the Oncologist how he behaved during our first 2 meetings. 

hopefully you get somewhere . If not you can complain and no doubt Brian can give you details as we are in Scotland and the process is different 

Best wishes & hugs 

Liz & OH xxx

Hi Lucy, your husband's care and treatment is determined by his multi disciplinary team MDT, in partnership with you, made up by an oncologist, radiologist, surgeon and CNS, who may all have associates under them, so they will all have worked on your plan, so it's not too important which one you talk to, what matters is the disregard they've shown you and not giving you the time to sit down with them and go through your options thoroughly, but maybe they all thought surgery was the best option, which is fine, it's just nice if they could involve you properly in decision making.

It's good your getting pads, and have the inco team, and there's more than pelvic floor exercises to help with incontinence, any exercise that works the inner core,"lower abdomen," will help, I found pilates very good, and voiding "when youget the urgeto pee, try clenching the muscles belowto stopthe flow, it won't help much in the beginning, but it will help given time, if he does it in the toilet it will give him more confidence to hold it in longer, drink and diet can help, cutting out curry's and spicy foods, drinking plenty of water 4 pints a day, lowering the amount you drink is a bad idea and finally fizzy drinks, caffeine and alcohol can irritate the bladder, so moderation helps.

I will have everything crossed for good results, for you both.

Eddie  xx