Nerve pain after prostatectomy

Gedster 21 days ago

1 reply
40 subscribers
153 views

Hi, new here and this is my first post.

I see so many posts of people in these forums who are in a much worse state than me, so my issue may seem a bit trivial but here goes.

My story starts after a routine PSA test following blood in urine. Resultant biopsies confirmed prostate cancer (3+4) and I had my prostate removed early this year with a RARP procedure. It was negative margins, so all good. Cancer free.

Unfortunately I was left in quite severe pain - stabbing and burning urethral pain, radiating from the pelvis outward, but in particular when passing urine. After TWOC I was totally (severely) incontinent so the pain from urinating was constant and I struggled with this. It was eventually diagnosed as pudendal nerve damage, and I take both amitriptyline and pregabalin, which help significantly but I still have low level pain which I can tolerate.

I am 3 months post surgery, still totally incontinent, with no urge to go, even in the morning when my bladder is full. The pain returns when I exercise so the prospect of being continent and pain free does not look good.

I wonder if the this is a common symptom for a RARP procedure? Also if my pudendal nerve will ever repair, and if my pain and incontinence will ever stop. I should add that I am 65 and also recently diagnosed with early Parkinson's Disease, if that makes any difference.

Many thanks, Gedster

Denise K - Macmillan 20 days ago

Dear Gedster,

Thank you for reaching out to Macmillan. I can see you have joined the Prostate cancer forum, and I hope you find it helpful. My name is Denise, and I am one of the Macmillan Cancer Information Nurses on the helpline.

I am sorry to read you are experiencing pudental nerve damage, and severe incontinence causing you significant difficulties after your RARP procedure. This must be a very difficult time for you.

According to the British Association of Urological Surgeons (BAUS) between 1 in 20 and 1 in 33 patients ( 3- 5 % of patients undergoing RARP) experience severe incontinence which may or may not be temporary.

The information leaflet states if symptoms last more than a year further surgery may be necessary. The two possible procedures mentioned are artificial urinary sphincter or a synthetic male sling.

As your surgery was performed three months ago it is still early days and things may improve with time. The BAUS also recommends pelvic floor exercises for men and you can find the link here. You may want to discuss your pain medication, the timing of taking those and exercise with your team. Taking pain medication prior to exercise can significantly help.

If you wish, you can explore the Pelvic Pain Support Network’s website too. The link can be found here.

It is difficult to know if your newly diagnosed Parkinson’s disease is making your symptoms worse, but your GP or neurologist would be the best person to consult with. Parkinson’s disease can cause tension in the muscles which can make things worse. You can ask your prostate cancer specialist nurse (CNS) or your GP for a physiotherapy referral. Supportive treatment from a physiotherapist can be beneficial both for your pelvic floor exercises and Parkinson’s disease.

I hope you find this information helpful. Please do get in touch with us if you have more questions. You can call us free of charge on 0808 808 0000 or you can chat to us or email us. We are here every day from 8am to 8pm.

Best wishes,

Denise

Macmillan Cancer Information Nurse Specialist

Ref: DK/LR

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Nerve pain after prostatectomy