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Uncommon side effects of Prostatectomy - Surgery (prostatectomy / RP),lymphoedema,orgasm

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User
Posted 16 Jan 2015 at 19:08

Hi

I had Radical Prostatectomy (RP) surgery for localised prostate cancer about 5 months ago. (Gleason 3+4=7, PSA 29)

The margins were clear and 14 removed lymph nodes were all negative so now I am considered in remission/cured which is great news. 

However I suffer from 2 side effects that do not seem to appear much in the literature and in the forums so I wanted to ask if anyone on here has any experience of them or any advice.

Whilst I was lucky enough to avoid incontinence issues and was dry after just 3 weeks at least one of my nerve bundles was cut removing the lymph nodes/cancer/prostate so I do suffer from the usual Erectile Dysfunction (ED) but I am trying ways to cope with that.

The other main side effects are:

1. Whilst we can still do sex of a sort - when I orgasm I get an intense shooting pain in my rectum area by where the prostate was which I believe is due to the way the seminal vesicles and tubes were cut. 

Has anyone experienced this? Does it get less painful with time? Any suggestions to minimise the pain?

2. Lymphoedema of my leg and sometimes genital area. This seems to be a more common issue as lymph nodes are being routinely removed as part of cancer surgery. I am trying a compression stocking at the moment but it does not really seem to be helping and I think the swelling may be getting worse. (About 29% larger than the other leg and about two litres of extra lymph fluid!)  

As it appears this condition is considered incurable and lifelong I am considering Lymphaticovenous Anastomosis (LVA) surgery to hopefully put right what the NHS and current medical practices effectively caused. I really need different size shoes now so it is a big issue.

Has anyone suffered from this? Again any suggestions? Does it get better with time?

 

Thanks for reading and I look forward to any comments form anyone on here

 

User
Posted 18 Jan 2015 at 17:06

Thanks for replies

@Steve

Yes i did do the pelvic floor exercises before the op and go dancing 4/5 times a week though I hate the gym! (so thats a no-no for me :-) )

I find the dancing helps me mentally (as I enjoy it) but the effect on my lymphoedema whether I dance or not seems about the same.  Therefore after listening to all points of view (mots which tried to dissuade me from it) and trying both I have resumed dancing.

I knew a bit about lymphoedema before the op (though a now know a lot more and just how bad it can be and how resistant to treatment it is (generally it is classed by the Lymphoedema Clinics / professionals as incurable and you just have to live as best you can with it).

 

@Bri / Lynn

My surgeon did not discuss removing ANY lymph nodes with me when I had my consultation to decide on which approach I was going to take RP, radiotherapy,brachytherapy etc. 

Then on the day of op just before going for the op , he came to see me and just dropped into the conversation that he 'may' have to remove 'a couple' of nodes. In practice he removed 14 (all of which tested negative)

This was  a bit of a shock to both me and my wife (who was also present at both meetings). However by then I was committed mentally to having the op so convinced myself it would be ok.

In hindsight I question whether I would have agreed to the removal of any if I had proper time to consider my options as all signs pointed to my cancer being localised with no lymph or bone affected. I would probably have agreed to the RP still but without the lymph node removal. then if my psa had not gone down I could have still had some radiotherapy on them.

I realise that this is easy to say with hindsight and my comment about the lympoedema being caused by the op (which was meant meant to be a factual comment - as I did not have this condition before - so it was an unintended side effect) was not in any way meant to trivialise the skill of the main op by the surgeon (for which I am obviously grateful successfully removed my cancer - his main priority) but to pass 'constructive' feedback that this current methodology of removing lymph nodes.

Particularly for prostate and breast cancer has a very high rate of causing the lymphoedema side effect (which whilst not terminal directly has a very profound effect on Quality of Life afterwards and indeed due to the high incidence of Cellulitis infection - which I myself suffered - leads to high rates of subsequent hospitalisation and cost to the NHS) and therefore needs to addressed as a serious side effect. 

Until I was affected I did not realise how common and hard to treat Lymphoedema was. Checkout one of the forums if you are interested in this such as https://healthunlocked.com/search/lymphoedema. 

Unfortunately I hear all too often that whilst patients generally get an excellent standard of care and support for main conditions such as cancers the aftercare/treatment leaves a lot to be desired and one is left (I certainly was) with the impression that the surgeon has done his bit and any subsequent problems aren't important. If no-one expresses issues then no-one realises that the surgery option has to improve as medical knowledge moves forward with time.

When I made my choice - which we all know is hard enough anyway - I was never told about lymph node removal and its side effects. Everyone seems to dwell on the Incontinence and ED as if they are the only issues to consider. I agree these are indeed the main 2 but I think now that Lymphoedema should certainly be a close third - or at least always mentioned. Likewise (as Lynn correctly mentions) although a much less common side effect, I also think the painful orgasms should be mentioned. Then armed with 'all' the current knowledge one is much better position to make an informed decision (I spent a lot of time researching before I made mine).

 

 

 

User
Posted 16 Jan 2015 at 21:08

Painful or intense orgasm is so common that it is listed in the PCUK and NHS leaflets as a likely side effect. Unlikely to be about the way anything is cut - researchers don't know for certain why it happens but most popular theory is that it is linked to the lack of ejaculate and/or pelvic floor spasms. For most men that have mentioned it on this forum, it has got better with time.

Lymphodema is not unusual either and is the reason that many hospitals now only remove lymph nodes if there is suspicion about them. When dad had his op 13 years ago, nerve sparing was still a trial but lymph node removal was standard practice. Not sure I am particularly comfortable with your comment though - "I am considering Lymphaticovenous Anastomosis (LVA) surgery to hopefully put right what the NHS and current medical practices effectively caused" - the other way of looking at it is that lymphodema may be a small price to pay for the life and possible remission that the NHS has caused.

Edited by member 16 Jan 2015 at 23:30  | Reason: Not specified

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

User
Posted 18 Jan 2015 at 18:27

Sorry but it sounds to me like your research wasn't very thorough and / or you didn't choose a surgeon very well. It should not be a shock that the surgeon may discover whilst inside that some lymph nodes need closer inspection in a petrie dish and perhaps you would feel even less kindly towards the medics if you were now facing salvage treatment or the news that your cancer has become incurable because some lymph nodes had been affected and left in situ. Some of your generalisations (based on your own experience) are not reflective of many of our stories and generally, people who choose well are not abandoned with poor after-care (although there are always exceptions). I wonder, how did you choose your surgeon and what kind of stats did you request from him? Did you go out of area and have since been caught between your home CCG and the area where you were treated?

John & I are also dancers; as you say, it is excellent exercise but doesn't necessarily help with lymphatic drainage. A little risque but you could consider asking for a referral for specialist lymphatic massage - some Maggie's centres and hospices offer this in their daycare centres. You could also read Spurspark's experiences of lymphodeoma by using the search facility although his was caused not by the removal of nodes but due to the cancer spreading through his lymphs and the side effects of the trials he was on.

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

User
Posted 04 Apr 2015 at 15:56

Keith,

I had orgasmic pain for a while after the op. It did go after a while, but has been replaced in that same area by a regular intense sexual urge. No, I am not joking or making this up. It has not decreased over the six years since I had the op and is now causing me some mental anguish. I have tried posting a separate 'conversation' about this (today, 4.4.15), but it has not yet appeared on here...

But the good news for you is, the pain you describe is normal and happens to a few men. 

Show Most Thanked Posts
User
Posted 16 Jan 2015 at 19:49
Oh my word.Have never heard of that happening.
User
Posted 16 Jan 2015 at 20:17
Hi Kieth

On the matter of pain at orgasm I experienced this, it was extremely uncomfortable and a peculiar feeling at first but it did subside over time. I put it down to nerve damage during op, I am 18 months post RP and whilst I still find it a bit strange sometimes it is not painful.

I also developed some lymphodema in my lower legs I have found walking helps reduce and control this. I go to gym three times a week and have a 20 minute session on treadmill. You obviously don't need the gym but I have a swim afterwards so it suits me.

All the best in your continuing recovery.

John

User
Posted 16 Jan 2015 at 20:29

Hi Keith,

One thing I have learned since my diagnosis and Robot Op is that nothing is certain, and nothing is consistent between one and and another.

I think your continence recovery is remarkable, so well done and many congratulations to you. The issue with rectally based pain on orgasm is something I know diddley about, not had it.

What does your GP or support team say about it?

And please do remember, that although 1 poster here does not know about it, your symptoms, that 1 poster here is but a tiny tiny tiny proportion of all those who have suffered PCa and an operation, so please don't be too disheartened by that opinion expressed here.

atb

Dave

User
Posted 16 Jan 2015 at 21:08

Painful or intense orgasm is so common that it is listed in the PCUK and NHS leaflets as a likely side effect. Unlikely to be about the way anything is cut - researchers don't know for certain why it happens but most popular theory is that it is linked to the lack of ejaculate and/or pelvic floor spasms. For most men that have mentioned it on this forum, it has got better with time.

Lymphodema is not unusual either and is the reason that many hospitals now only remove lymph nodes if there is suspicion about them. When dad had his op 13 years ago, nerve sparing was still a trial but lymph node removal was standard practice. Not sure I am particularly comfortable with your comment though - "I am considering Lymphaticovenous Anastomosis (LVA) surgery to hopefully put right what the NHS and current medical practices effectively caused" - the other way of looking at it is that lymphodema may be a small price to pay for the life and possible remission that the NHS has caused.

Edited by member 16 Jan 2015 at 23:30  | Reason: Not specified

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

User
Posted 17 Jan 2015 at 10:54

My op was 9 months ago and like you Keith I had seminal vesicle and lymph node removal. I don't and have not experienced either of the side effects you have mentioned. There are some differences between us. Firstly, you were continent almost immediately whereas I wasn't for at least 6 months and even now I'm not 100%. This means I have routinely done my pelvic floor exercises. Lyn mentioned pelvic floor spasms as a possible reason for your pain and, connecting the dots, I wonder if this may be, if you don't/haven't done PFE's, the reason. 

 

I also exercise frequently, swimming at least three times a week and I have a gym here at home. Even if you don't exercise this most probably wouldn't be the reason you suffer from Lymphedema but it may well help to alleviate it.

 

Steve

 

 

 

User
Posted 17 Jan 2015 at 14:40

When I met the surgeon who did my op. He explained there are two schools of thought about the operation ie take out everything and risk serious side effects or only take out what is required. He said the one 100% guarantee he could offer was that he could not put anything back.
So he said he would take a sample of lymph nodes rather than removing all or the majority. Naively I thought he meant taking like a biopsy from them but he actually removed 16.
He said the risk of removing more was the swelling of the legs which could have an adverse effect on QOL.

From what I've read I'm not sure all surgeons discuss these issues with the patient so an informed choice can be made

Bri

User
Posted 18 Jan 2015 at 17:06

Thanks for replies

@Steve

Yes i did do the pelvic floor exercises before the op and go dancing 4/5 times a week though I hate the gym! (so thats a no-no for me :-) )

I find the dancing helps me mentally (as I enjoy it) but the effect on my lymphoedema whether I dance or not seems about the same.  Therefore after listening to all points of view (mots which tried to dissuade me from it) and trying both I have resumed dancing.

I knew a bit about lymphoedema before the op (though a now know a lot more and just how bad it can be and how resistant to treatment it is (generally it is classed by the Lymphoedema Clinics / professionals as incurable and you just have to live as best you can with it).

 

@Bri / Lynn

My surgeon did not discuss removing ANY lymph nodes with me when I had my consultation to decide on which approach I was going to take RP, radiotherapy,brachytherapy etc. 

Then on the day of op just before going for the op , he came to see me and just dropped into the conversation that he 'may' have to remove 'a couple' of nodes. In practice he removed 14 (all of which tested negative)

This was  a bit of a shock to both me and my wife (who was also present at both meetings). However by then I was committed mentally to having the op so convinced myself it would be ok.

In hindsight I question whether I would have agreed to the removal of any if I had proper time to consider my options as all signs pointed to my cancer being localised with no lymph or bone affected. I would probably have agreed to the RP still but without the lymph node removal. then if my psa had not gone down I could have still had some radiotherapy on them.

I realise that this is easy to say with hindsight and my comment about the lympoedema being caused by the op (which was meant meant to be a factual comment - as I did not have this condition before - so it was an unintended side effect) was not in any way meant to trivialise the skill of the main op by the surgeon (for which I am obviously grateful successfully removed my cancer - his main priority) but to pass 'constructive' feedback that this current methodology of removing lymph nodes.

Particularly for prostate and breast cancer has a very high rate of causing the lymphoedema side effect (which whilst not terminal directly has a very profound effect on Quality of Life afterwards and indeed due to the high incidence of Cellulitis infection - which I myself suffered - leads to high rates of subsequent hospitalisation and cost to the NHS) and therefore needs to addressed as a serious side effect. 

Until I was affected I did not realise how common and hard to treat Lymphoedema was. Checkout one of the forums if you are interested in this such as https://healthunlocked.com/search/lymphoedema. 

Unfortunately I hear all too often that whilst patients generally get an excellent standard of care and support for main conditions such as cancers the aftercare/treatment leaves a lot to be desired and one is left (I certainly was) with the impression that the surgeon has done his bit and any subsequent problems aren't important. If no-one expresses issues then no-one realises that the surgery option has to improve as medical knowledge moves forward with time.

When I made my choice - which we all know is hard enough anyway - I was never told about lymph node removal and its side effects. Everyone seems to dwell on the Incontinence and ED as if they are the only issues to consider. I agree these are indeed the main 2 but I think now that Lymphoedema should certainly be a close third - or at least always mentioned. Likewise (as Lynn correctly mentions) although a much less common side effect, I also think the painful orgasms should be mentioned. Then armed with 'all' the current knowledge one is much better position to make an informed decision (I spent a lot of time researching before I made mine).

 

 

 

User
Posted 18 Jan 2015 at 18:27

Sorry but it sounds to me like your research wasn't very thorough and / or you didn't choose a surgeon very well. It should not be a shock that the surgeon may discover whilst inside that some lymph nodes need closer inspection in a petrie dish and perhaps you would feel even less kindly towards the medics if you were now facing salvage treatment or the news that your cancer has become incurable because some lymph nodes had been affected and left in situ. Some of your generalisations (based on your own experience) are not reflective of many of our stories and generally, people who choose well are not abandoned with poor after-care (although there are always exceptions). I wonder, how did you choose your surgeon and what kind of stats did you request from him? Did you go out of area and have since been caught between your home CCG and the area where you were treated?

John & I are also dancers; as you say, it is excellent exercise but doesn't necessarily help with lymphatic drainage. A little risque but you could consider asking for a referral for specialist lymphatic massage - some Maggie's centres and hospices offer this in their daycare centres. You could also read Spurspark's experiences of lymphodeoma by using the search facility although his was caused not by the removal of nodes but due to the cancer spreading through his lymphs and the side effects of the trials he was on.

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

User
Posted 18 Jan 2015 at 18:47

Touch wood I don't suffer with lymphoedema and as previously said I had 16 lymph nodes removed. I would have been concerned if he hadn't checked the lymph nodes out as the MRI is not reliable enough to guarantee there is no breech. I was told mine was contained but on histology there was a focal breech.

Lyns point about the surgeon is valid and I am reinforcing that view in case any newbies read this. I researched my surgeon and refused the first one I met. My surgeon had over a 1000 of these operations under his belt so knew his stuff. Let's not forget the surgeons primary concern is getting the cancer. But you should have been informed before the day of the op.

I hope you can get some support for the lymphoedema.

Bri

User
Posted 17 Mar 2015 at 20:37

I was diagnosed with Pca last year at the very lowest level (0.2mm in 1 of 35 samples) but had previously been diagnosed with BPH (just an enlarged prostate). During that time, before Pca diagnosis, I sometimes had the shocking pain in the rectum, so I assume the cause in my case was additional pressure around the nerves and in other's cases (post operation) due to the new environment the nerves find themselves in. For me these instances have subsided even though I have had no surgery yet, so whatever pressure is on the nerves has changed the symptom. I do suffer from some ED. My decision on treatment lies ahead of me.

David

Edited by member 17 Mar 2015 at 20:39  | Reason: Not specified

User
Posted 04 Apr 2015 at 15:56

Keith,

I had orgasmic pain for a while after the op. It did go after a while, but has been replaced in that same area by a regular intense sexual urge. No, I am not joking or making this up. It has not decreased over the six years since I had the op and is now causing me some mental anguish. I have tried posting a separate 'conversation' about this (today, 4.4.15), but it has not yet appeared on here...

But the good news for you is, the pain you describe is normal and happens to a few men. 

User
Posted 05 Apr 2015 at 22:42

Originally Posted by: Online Community Member

Thanks for replies

@Steve

Yes i did do the pelvic floor exercises before the op and go dancing 4/5 times a week though I hate the gym! (so thats a no-no for me :-) )

I find the dancing helps me mentally (as I enjoy it) but the effect on my lymphoedema whether I dance or not seems about the same.  Therefore after listening to all points of view (mots which tried to dissuade me from it) and trying both I have resumed dancing.

I knew a bit about lymphoedema before the op (though a now know a lot more and just how bad it can be and how resistant to treatment it is (generally it is classed by the Lymphoedema Clinics / professionals as incurable and you just have to live as best you can with it).

 

@Bri / Lynn

My surgeon did not discuss removing ANY lymph nodes with me when I had my consultation to decide on which approach I was going to take RP, radiotherapy,brachytherapy etc. 

Then on the day of op just before going for the op , he came to see me and just dropped into the conversation that he 'may' have to remove 'a couple' of nodes. In practice he removed 14 (all of which tested negative)

This was  a bit of a shock to both me and my wife (who was also present at both meetings). However by then I was committed mentally to having the op so convinced myself it would be ok.

In hindsight I question whether I would have agreed to the removal of any if I had proper time to consider my options as all signs pointed to my cancer being localised with no lymph or bone affected. I would probably have agreed to the RP still but without the lymph node removal. then if my psa had not gone down I could have still had some radiotherapy on them.

I realise that this is easy to say with hindsight and my comment about the lympoedema being caused by the op (which was meant meant to be a factual comment - as I did not have this condition before - so it was an unintended side effect) was not in any way meant to trivialise the skill of the main op by the surgeon (for which I am obviously grateful successfully removed my cancer - his main priority) but to pass 'constructive' feedback that this current methodology of removing lymph nodes.

Particularly for prostate and breast cancer has a very high rate of causing the lymphoedema side effect (which whilst not terminal directly has a very profound effect on Quality of Life afterwards and indeed due to the high incidence of Cellulitis infection - which I myself suffered - leads to high rates of subsequent hospitalisation and cost to the NHS) and therefore needs to addressed as a serious side effect. 

Until I was affected I did not realise how common and hard to treat Lymphoedema was. Checkout one of the forums if you are interested in this such as https://healthunlocked.com/search/lymphoedema. 

Unfortunately I hear all too often that whilst patients generally get an excellent standard of care and support for main conditions such as cancers the aftercare/treatment leaves a lot to be desired and one is left (I certainly was) with the impression that the surgeon has done his bit and any subsequent problems aren't important. If no-one expresses issues then no-one realises that the surgery option has to improve as medical knowledge moves forward with time.

When I made my choice - which we all know is hard enough anyway - I was never told about lymph node removal and its side effects. Everyone seems to dwell on the Incontinence and ED as if they are the only issues to consider. I agree these are indeed the main 2 but I think now that Lymphoedema should certainly be a close third - or at least always mentioned. Likewise (as Lynn correctly mentions) although a much less common side effect, I also think the painful orgasms should be mentioned. Then armed with 'all' the current knowledge one is much better position to make an informed decision (I spent a lot of time researching before I made mine).

 

I agree, not everyone is given the overall picture by their consultant. I, like you, have experienced this during a recent op when I was told on the morning of the op something quite important that may have made me think twice (or at least caused me to look into it further) had I been told earlier! Also, I agree .... when you leave hospital you are not always told exactly what to expect, what you should and shouldn't do or how you best cope (e.g. with a catheter). However, once I made contact with the specialist nurse at the hospital I was provided with a lot of good advice relating to my questions (by email) - which was really useful.

The service I have had so far from the NHS is good (and yes, compared to most of the rest of the world there is no comparison) but it could be a lot better with a few tweaks!

dl

 
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