Bilateral Nerve Pain Following Prostatectomy

Posted by lowth21 @lowth21, Mar 1, 2017

I was diagnosed with prostate cancer 4 years ago. Biopsy advised one agressive cancer and 2 not as agressive. Had a prostatectomy. Woke up from surgery with severe burning pain in and around my rear. This continued in my 3/4 days in hospital. Worst hospital stay ever. As soon as I left hospital for home, I had difficulty sitting due to the burning pain in my buttocks and down the back of my thighs.My cancer was advanced prostate cancer due to it being outside the prostate. Following radiotherapy, my PSA levels have been stable for 12 months at .04. The nerve pain down my thighs have not diminished and has radiated down under my feet. When I sit I have burning pain down the back of my thighs and burning pain under my feet when I walk. I am currently on 450mg of Lyrica a day but does not appear to be helping. As the nerve pain is bilateral (ie in both legs and feet) my doctor believes my sciatic nerve was damaged in surgery in my lower back.Urologist advised that it has never happened before. Just lucky I guess. I was wondering if any man out there has had a similar problem following prostate surgery and what treatment has worked/not worked for them as I am desperate to get this fixed.

I may not be of much help, @lowth21, but I’m prompted to mention a couple of possibly pertinent experiences. For background, my cancer was in the bladder, not the prostate, but was discovered after a TURP procedure to alleviate benign prostatic hyperplasia. Another difference for me is that PSA tests are of no value in cases of bladder cancer. A total of 12 small, low-level malignant, epithelial polyps were later removed from my bladder by a TURB procedure.

First a question: What can you tell us about the “doctor (who) believes your sciatic nerve was damaged?” About a year after my bladder surgery, I developed pain in my pelvis, buttocks, and thighs. My primary care physician (PCP) sent me to spinal pain specialists, who quickly pointed to my sciatic nerve as a prime suspect, ordered an MRI, suggested I get ready for spinal surgery, and told me to start taking steroid shots to alleviate the pain. All of these fit into the daily routine advice from the spinal pain unit. But first, I needed six weeks of physical therapy, they said.

During that time, I did some research and talked to my PCP a couple of times about possible diagnoses. We settled on trying an anti-inflammatory therapy that only becomes a diagnosis if it works! Looking for a root cause, we assumed it might be inflammation of one or the sacro-iliac joint where the spine connects to the pelvis — perhaps an after-effect of either the TURP or the TURB surgical procedures. She arranged for injecting one joint with an anti-inflammatory medication, and within a few days, the pain was gone. A second injection was never needed.

This result may be coincidental rather than causative, but I thought you’d like to have it as one of the ideas to discuss with your “doctor.” Keep us posted so we can learn from your experience and, hopefully, find other questions you can put to your medical team.
Martin

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Thank you Martin for replying to my post. I did not respond immediately as I was fortunate to obtain a referral to a top Neurosurgeon who also teaches neurosurgery at university. I was very interested in your response as regards “inflammation of the sacro-iliac joint”. I read the results of my pelvis MRI which stated “No accute sacroilitis is demonstrated”. I spoke to the neuro surgeon and he has ruled that out at this stage.
My Nurosurgeon has now ordered a new MRI from a new MRI machine which apparently provided a much clearer picture of the nerves. He has ordered:
– MRI – whole spine and GAD
-MRI of the pelvis
-MRN of the sacral neurography PLUS
-Nerve Conduction test of LL inc Perineal
The surgeon mentioned he has been involved in some research of PFCN (involvement of the posterior femoral cutaneous nerve (PFCN), including its perineal and inferior cluneal branches to the symptom of “sitting pain.) which he believes “could” be a cause of my pain possible caused by the epidural durin my prostatecomy some 4 years ago.
I will continue to post here when I get further results.
Thank you so much for your reply to my post
John

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I have just recently run across this web site. I had a turp for bph on July 30 this year, major bleeding Sept 16th with repeat turp (I cann't find out why this should have had to be done again) and cauterization of bleeders. Ever since then I have experiencing severe pain in lower pelvis area. Taking a lot of tramadol but not getting a solution for the problem. Finally a mri has been scheduled, maybe this will lead to an answer. All of the posts at this site sound very familiar. Any comments would be appreciated. THANKS No cancer.

Liked by glgraham

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@hamalot

I have just recently run across this web site. I had a turp for bph on July 30 this year, major bleeding Sept 16th with repeat turp (I cann't find out why this should have had to be done again) and cauterization of bleeders. Ever since then I have experiencing severe pain in lower pelvis area. Taking a lot of tramadol but not getting a solution for the problem. Finally a mri has been scheduled, maybe this will lead to an answer. All of the posts at this site sound very familiar. Any comments would be appreciated. THANKS No cancer.

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Well. I just found this site. Looks like it my be dead now. Over a year since the last post. Is anyone out there

Liked by glgraham

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I also just found it. Writtng from Scandinavia

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Hi, I monitor it occasionally. How are you doing? I had an RPA in 1995 at age 49. I’m 75 now and no return PSA <.1

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Interesting. I also had prostate removed in April of 2018. Have had nothing but pain and have pretty much become a cripple. I was hoping to find someone out their that had a similar experience and finally figured out what happened.
Thanks for the reply.

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Had mine in 2019 and the general pubic area is numb. Hasn't affected the "plumbing" so I just live with it.

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Hi All. Thank you for resurrecting my original post from back in March 2017. Since then I have done a lot of research and spoken to a few specialists. We have come to the conclusion that my PFCN (Posterior Femoral Cutaneous Nerve) was damaged during surgery and causing my sitting pain. This nerve passes right down the outside edge of my sit bones and continues right down the back of the leg. I am still having problem sitting but not as bad as before. A strange thing has happened over the last 4 years. I originally had pain sitting bilaterally for 5 years and then the pain went away on one side and then 12 months later it swapped sides. Very strange!!! My Doctor has changed my medication to Palexia some 5 months ago. I take IR 150 2 hours before I have to sit for a longer period ie driving and then SR50 1/2 hour before I have to sit. I now get some relief from this medication. In April I am also seeing a specialist to undertake a Radio Frequency Neurotomy on my PFCN to see if that assists me in sitting for a longer period. I will update my post after I have the RFN. Good luck all with your individual problems. Stay positive and most importantly talk to someone if it is getting you down

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Nice to hear from you low back pain is an issue I have dealt with all my life. If the pain moves from one side to the other this is actually a good sign as your back and spine a trying to realign. Have you seen a chiropractor? Based on what you have said I suspect 3 treatments and you will see change.

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@stantallusa

Well. I just found this site. Looks like it my be dead now. Over a year since the last post. Is anyone out there

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Welcome new members @stantallusa and @olanordman to the Prostate Cancer group.
Are you experiencing nerve pain following prostatectomy?

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Yes. Initially it was in both groins with the left more pronounced. Then after 6 months the pain in right side groin disappeared. I now have it in the left groin, but it is when I have an erection/during sex. I realise it is like a sharp nerve pain lasting about 2 or 3 seconds that seem to move from upper part of the groin downwards. However, when sitting and doing my normal work I have no pain. I had waste pain but an MRI results showed I had a stiff muscle in my lower back

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@lowth21

Hi All. Thank you for resurrecting my original post from back in March 2017. Since then I have done a lot of research and spoken to a few specialists. We have come to the conclusion that my PFCN (Posterior Femoral Cutaneous Nerve) was damaged during surgery and causing my sitting pain. This nerve passes right down the outside edge of my sit bones and continues right down the back of the leg. I am still having problem sitting but not as bad as before. A strange thing has happened over the last 4 years. I originally had pain sitting bilaterally for 5 years and then the pain went away on one side and then 12 months later it swapped sides. Very strange!!! My Doctor has changed my medication to Palexia some 5 months ago. I take IR 150 2 hours before I have to sit for a longer period ie driving and then SR50 1/2 hour before I have to sit. I now get some relief from this medication. In April I am also seeing a specialist to undertake a Radio Frequency Neurotomy on my PFCN to see if that assists me in sitting for a longer period. I will update my post after I have the RFN. Good luck all with your individual problems. Stay positive and most importantly talk to someone if it is getting you down

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Glad you are doing better and glad you had doctors who were really trying to help you. My dr who did the operation basically threw me over the fence. On my own. I have been to chiropractors and pain clinics and rehabilitation centers. No help. Last thing I tried was having 5 nerves in the last vertebrae. Not much better. Drs are afraid to prescribe any pain meds so I basically OD on over the counter stuff. Walked 10 miles a day before my operation. Have a hard time walking from the parking lot to the shopping cart in Walmart. At my wits end.

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@stantallusa

Glad you are doing better and glad you had doctors who were really trying to help you. My dr who did the operation basically threw me over the fence. On my own. I have been to chiropractors and pain clinics and rehabilitation centers. No help. Last thing I tried was having 5 nerves in the last vertebrae. Not much better. Drs are afraid to prescribe any pain meds so I basically OD on over the counter stuff. Walked 10 miles a day before my operation. Have a hard time walking from the parking lot to the shopping cart in Walmart. At my wits end.

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Sorry to hear about your issues, I am not sure this will help but maybe worth a try. I had the old vaccine for shingles which gave me a false sense of security when I contracted shingles for I did not recognize the rash as shingles. Anyway now I have to deal with nerve pain. My daughter recommended geranium oil, so I tried it and it really helped me. Not sure if it will help you but maybe worth a try.

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@semeon

Nice to hear from you low back pain is an issue I have dealt with all my life. If the pain moves from one side to the other this is actually a good sign as your back and spine a trying to realign. Have you seen a chiropractor? Based on what you have said I suspect 3 treatments and you will see change.

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@semeon There is a reason you do not set Chiropractors on Hospital Staffs… I live in Iowa and back decades ago I did work for and company owned by the Palmer's… Chiropractic College in Davenport Iowa.. there was a bronze plaque on the main street noting the site of the first chiropractic adjustment that cured someone of deafness… There are limitations as to what chiropractic can do …and cannot do. There are many examples of additional injury as a result.. See your Orthopedic specialist first.. K

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