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Reassurance if possible.

User
Posted 27 Feb 2016 at 18:06
Hi all, worried about Paul just over a week ago started saying he had back ache went to Dr who said it seemed muscular and most likely it was due to him becoming more active, did water sample nothing showed up this happened before though and he ended up in A&E. Started back to work this week part time but 45 mins journey each way driving, he says he feels ok not like last time but described it as a dull ache both sides kidneys? Got dr appointment tue to check again not infection, I am just really worried. He has had mri on spine, lower half, bladder scan all ok and post op results contained. Has anyone else experienced this type of pain 7 weeks post op. Thank you.
User
Posted 27 Feb 2016 at 19:14

Possibly doing too much too soon Jayne - are you sure he should be driving? You do use stomach muscles to turn the wheel, put on handbrake etc or perhaps driving position is putting strain on the muscles that are still healing? Has he checked with his insurance company?

Backache is a common problem after epidural I think - there are whole websites devoted to women who have back problems as a result of epidural ceasarian.

He is presumably taking no or very few painkillers and so may be more aware of the aches and pains now than he was immediately after the surgery. Some men have shoulder problems rather than lower back - often as a result of being suspended feet up on an operating table for hours. Add to that the possibility that he has been sleeping in a slightly different position while his trunk healed?

Edited by member 27 Feb 2016 at 21:49  | Reason: Not specified

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

User
Posted 02 Mar 2016 at 20:54
Hi Luther & Lyn just to let you know Paul had dr appointment convinced it is muscular even showed him on diagram advised regular movement combined with rest when needed and cocodomal. Nothing shown up in water sample. Know it's a long process but every twinge seems to cause concern. Thank you for listening Jayne
User
Posted 23 Mar 2016 at 13:22
Hi walnut55, thank you for your feedback. When I read your experience of pain to Paul his response was that's exactly how I feel - which did help reassure him. Jx
User
Posted 03 Apr 2016 at 16:54
Hi chris lovely to hear from you, gardening is my secret pleasure 😊 trying to broach ed referral with Paul but not getting very far sometimes I feel he sees me more as his best friend than wife I don't feel attractive anymore but it's ok it's a small price to pay for what we have been through. Anyway how are you getting on? Jayne x
User
Posted 03 Apr 2016 at 17:02
Many thanks Luther as I said to Chris gardening is my secret pleasure-my escape 😊 we are getting there slowly and know we still have challenges ahead but feeling so much better than 6 months ago. Hope you are doing well and enjoying the start of spring. Jayne x
User
Posted 05 Apr 2016 at 18:43
Hi chris how does E put up with you - it must be love 😊 hope you are enjoying grandparent visit. We are visiting Paul's family who we are going away with at Christmas this wkend no doubt there will be lots of beer and wine - Ben bit scared as 16 year old niece wants to take him holiday clothes shopping. It is a big step forward for us all and hopefully go some way to get over such an awful last Christmas. Anyway keep in touch. Jx
User
Posted 18 Apr 2016 at 23:21

Chris, are you also aware that the epidural used during / after your RP (assuming you had one) could also be a culprit? Back / hip pain is a common side effect of epidural, although not always acknowledged by health professionals. Just log on to any pregnancy / new mum forum and read all the cases. A physio is a good starting point and you could ask him/her about a TENS machine.

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

User
Posted 15 May 2016 at 12:05
Hello just an update I do keep a check on how everyone is doing but tend not to post as much. Well five months after op and Paul seems to be doing well gets tired but is starting to enjoy things he used to also this week first week without pads another hurdle crossed. Intimacy still on cialis and there has been slight improvement but we are working on that together. He is off off to Barcelona for a mature 😊 stag weekend in July which will do him the world of good. I'm still having counselling as it was extended but not as frequent now. Ben studying hard for a levels hoping to get into Worcester or Wolverhampton uni - we are both so proud of how he has coped and helped us. Fighting the system a bit at the moment with Pauls brother although 50 in July and mom had breast cancer possible gene link his dr will not do psa feels not needed unless he has symptoms thankfully pc nurse on this site is sending through info to help argue with Dr. Anyway housework awaits hope I haven't bored everyone too much. Take care Jayne xxx
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User
Posted 27 Feb 2016 at 19:12

Hi Jayne,

I'm no medic as you must know....

Just want to reassure you that given Paul's PCa staging it's highly unlikely to be any PCa spread that is causing the pain.

I had aches and pains after my op... ( I still do on occasions  ) 

I spoke to my consultant, as I had concerns just like you... he very quickly put my mind at rest..

Best Paul sees his GP as planned to check out any possible related problems..

Luther


User
Posted 27 Feb 2016 at 19:14

Possibly doing too much too soon Jayne - are you sure he should be driving? You do use stomach muscles to turn the wheel, put on handbrake etc or perhaps driving position is putting strain on the muscles that are still healing? Has he checked with his insurance company?

Backache is a common problem after epidural I think - there are whole websites devoted to women who have back problems as a result of epidural ceasarian.

He is presumably taking no or very few painkillers and so may be more aware of the aches and pains now than he was immediately after the surgery. Some men have shoulder problems rather than lower back - often as a result of being suspended feet up on an operating table for hours. Add to that the possibility that he has been sleeping in a slightly different position while his trunk healed?

Edited by member 27 Feb 2016 at 21:49  | Reason: Not specified

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

User
Posted 29 Feb 2016 at 20:42
Hello Luther & Lyn thank you both for your feedback it does offer reassurance. Paul got message to consultant today not unduly concerned, seeing Dr tomorrow all indications and advice sought seem to indicate too much too soon. Insurance and consultant did clear Paul for driving but 45 mins drive each way is quite a bit. Will let you know how we get on. Many thanks Jayne x
User
Posted 02 Mar 2016 at 20:54
Hi Luther & Lyn just to let you know Paul had dr appointment convinced it is muscular even showed him on diagram advised regular movement combined with rest when needed and cocodomal. Nothing shown up in water sample. Know it's a long process but every twinge seems to cause concern. Thank you for listening Jayne
User
Posted 03 Mar 2016 at 05:36

hi jayne

if it is muscular how about booking some sessions with a physio they will advise on excersises, when I was diagnosed hospital gave me 6 free visits to go to an Aurora centre for various massages does yours do similar

regards

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 03 Mar 2016 at 12:21
Jayne

Like you and no doubt others I started worrying about back ,hip ,thigh and pelvic pain. GP thinks I would benefit from physiotherapy. I do have some ostio arthritis and having x-ray next week.

Saw my urethra consultant today and managed to also see my lead Uro-onco nurse. She said with a PSA of 0.06 the pains are highly unlikely to be PCa related but gave me a PSA test form just to check no recent rise.

Thanks Chris

User
Posted 07 Mar 2016 at 18:57
Hi nidge & chris thank you for advice on physio awhile ago we had a facility to self refer so will be checking out. We went away this weekend first time since all this started only local but felt like a million miles away and so lovely getting back some normal time again and laughing 😊. Unfortunately came to an end today Paul has picked up some virus from work we believe as quite a few people have similiar symptoms v unwell sickness, v weak, so keeping close eye on him. Chris have you had psa result yet or xray? Jx
User
Posted 07 Mar 2016 at 19:31

Hi Jayne
I'm so pleased you and Paul had a good break and learnt to laugh again despite it all. It gets easier as the months roll on. Sorry he's not well now though. Keep posting , keep talking.
Chris

If life gives you lemons , then make lemonade

User
Posted 07 Mar 2016 at 19:37
J

Glad you had a good break sorry about the virus.

X-ray this Friday PM, sods law phlebotomy closed Friday afternoons. Could get it at docs but want to do it at Hospitial as normal.

Thanks Chris

User
Posted 08 Mar 2016 at 19:28
Will do Chris thank you a bit better this evening. Jx
User
Posted 08 Mar 2016 at 19:32
Hope all goes well Friday Chris totally understand keeping to same routine. Paul's dr has left so on the last two visits had to go over events of past few months thankfully consultant is excellent. Jx
User
Posted 17 Mar 2016 at 15:57
J

Just got my latest PSA 0.07 so a rise of 0.01. Uro onco nurse not worried and as before at such a low reading highly unlikely to be connected to the pains. See GP next week for x-ray results.

How is OH and his pains ?

Thanks Chris

User
Posted 22 Mar 2016 at 18:22
Hi chris sorry not been on for a bit. How did you get on with your results? Jayne x
User
Posted 22 Mar 2016 at 18:32
Hi, Paul back at work full time now but changed hours to suit less travelling time. Pains are easing but was really not well last week with a virus which Ben also got 😕. He does get tired very easily and a little grumpy but know that is to be expected. Continence is improving and has just started on cialis - has anyone had any experience of this med? Both apprehensive this week as first post op psa meeting. Counselling for me has been extended really finding it hard. Anyway on a positive it's Easter weekend and it looks like spring is here, take care Jx
User
Posted 22 Mar 2016 at 18:36
J

Dr rang today, they have been told that the xray report will take 4 weeks to come through. That will be 10 weeks from making an appointment to getting the result.

I have a theory that the daily 100 mg sildeafil may be causing the pain so going to drop it off for a couple of weeks. The downside is the sildeafil is helping with the incontinence.

GP also said she would not expect bone Mets unless the PSA was over 10?

Thanks Chris

User
Posted 22 Mar 2016 at 19:25

Hi Jayne

I've been on Cialis 5mg daily for last 11 days and nothing has changed, impotence wise, not that I expected it to. 

Perhaps I'm a bit more low back achey, and could say that the Cialis was responsible, but ( linking it to your earlier comment about OH's backache..) I strongly suspect it has a lot more to do with how the discomfort and incontinence  post op has led to me sitting differently and for longer periods than I'm used to.

I've been either sitting reclined, with the weight through my tailbone, or leaning forward and hooking my feet under a dining chair. This means that the muscles either side of the spine (at the level  below the ribs) are either being held stretched, in the former, or are overworking in a shortened position in the latter. They ache for this reason. They're doing work they're not usually called on to do for such long periods. 

In a healthy low back, sitting is accomplished by postural muscles, not the ones I'm over-using, and part of that postural system is the muscles of the pelvic floor. But after a prostatectomy  those pelvic floor muscles are suddenly required to be  in a heightened state of alertness to cope with incontinence. They're not able  to respond as readily to small  challenges in sitting balance. It's like asking them to multitask when they're not used to doing one of the tasks. As a consequence you can end up sitting more statically 'down there'. Typically, the pain is worse when rising from a chair,after sitting for sustained periods,  and eases when walking a bit.

Any half decent physio should be able to advise you how to sit correctly- and it is not 'chest out -shoulders back' as if you're having your army photo taken!  You can still follow up any necessary investigations whilst you're exploring this approach to self management. 

User
Posted 23 Mar 2016 at 13:17
Hi chris it seems an awful long time to wait. Isn't there anyone that can apply a little pressure for you - Dr, consultant? Hope you get the right answers very soon. Jx
User
Posted 23 Mar 2016 at 13:22
Hi walnut55, thank you for your feedback. When I read your experience of pain to Paul his response was that's exactly how I feel - which did help reassure him. Jx
User
Posted 03 Apr 2016 at 09:22
Hello just an update would have posted last week but didn't feel appropriate as quite a few members were having a very difficult time. Paul had his first psa test results which showed less than 0.01, consultant really pleased and next appointment 6 months. Offered ed referral but Paul requested a break for couple of months and continue with cialis. Consultant said when ready to get in contact. Possible referral for genetic testing due to mother's cancer and risk to our Son and niece. We are getting there slowly, although closer than ever not really intimate. Counselling has been extended but really helping. Anyway it's a bright morning off to do some gardening. Jayne x
 
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