I am 68. I had a robotic laproscopic nerve-sparing radical prostatectomy 11 weeks ago and the pathology showed that the cancer was confined to the prostate and the margins were clean. My PSA 8 weeks after surgery was 0. I am thrilled with the results.
Notes: 1. According to my surgeon I had a very large prostate which made the surgery take somewhat longer than normal. 2. I have had no radiation of any kind and, as I understand it, no chemotherapy is indicated.
But I had some problems following the surgery and I still have some...
When the catheter was removed after 7 days I was able to pass urine for about 18 hours but then my perineum got so tense that I could not void. I did not get to the ER in time and my bladder expanded so much that I started to leak urine internally where the bladder had been narrowed-down to be attached to the urethra. This was confirmed by what I think is called a cystogram.
The catheter was replaced and stayed in for a total of 17 days more so that the leak could heal.
My doctor followed up and a cystoscopy almost two-weeks ago which showed that the leak is closed.
On my doctors advice I have NOT been trying to restrain myself from passing urine since the area of the leak is so newly healed. My doctor told me to wait two weeks after the cystoscopy before starting to exercise my perineal muscles to control my urine.
Note: When sitting normally on a chair (as I am now in front of my computer) I do not pass urine. I must stand up from time to time or my bladder starts to hurt. When I stand the urine flows freely most of the time (sometimes, after I have been sleeping, it does not flow so freely. I think my muscles tense up while I am sleeping).
I am normally a very tense person. The area where my tension is most pronounced (and has been for many many years) is my pelvic floor and rectal area. For that reason I have, for many years, usually needed to push in order to move my bowels.
Even though I took more than the required amount of stool softeners after the surgery it was still difficult for me to move my bowels and I did some pushing (I was told not to but it was sort of a natural reflex). It was worst right after the surgery because of the narcotics which had been administered during surgery and were in the oxycodone I was given after the surgery. So I switched to drugs without narcotics as soon as possible (Tylenol and Ibuprofen) which was probably one week. I increased my intake of prune juice and fiber and I have tried to get some mild exercise (walking) and to spend time keeping myself calm but I still have erratic and intermittent rectal and pelvic floor pain which sometimes reaches considerable intensity. Sometimes it comes from the area of the astomosis (spelling? the new junction of the bladder and urethra) but most of the time it is all over my pelvic floor or around the anus or inside the rectum.
I was examined by my gastro-interologist and he found no signs of fistula in the rectum. He also said there was no evidence of hemorrhoids or fissures. Plus I have had a CT scan (about three weeks ago, a week before the cystoscopy mentioned above) with both oral and injected contrast which did not, as best I have been informed, show anything other than that there was the liquid from the leakage where there should not be liquid (outside the urethra and bladder). I was told that one could not determine if liquid was from a current leak or residual from a leak which had closed.
Most of the time I do not have to push because the stool is so soft from the prune juice but this morning for some reason I had to push and the result was terrifying pain so intense that I almost fell off the toilet and onto the floor. I thought I must be tearing my rectum apart but there was no blood, my perineum did not seem particularly tense, and the pain passed pretty quickly (after ten minutes or so) and I lay down for a while to rest. But I am terrified that the next time I need to move my bowels I will encounter the same excruciating pain.
The Questions: What are the possible causes of such pain in a case with a history like mine? How do I proceed from here?
Note: Thank you in advance for your response. I am getting better little by little but eleven weeks of pain and discomfort has worn me down and then the terrible pain I experienced this morning was so extreme that it has sent me to the internet in search of help.
Its hard to say if 11 weeks is a long time to recover (though the robot assistant should make recovery less than a month - you were informed that the prostate was large and hence the usual recovery time may thus be protracted), or if you are a slow healer (maybe a little of both). It is good that there are no problems with voiding urine and that there are no fistulas, fissures, and ulcers, these rectal symptoms are more likely going to improve as time passes. In the meantime, perhaps you need to take more stool softeners to eliminate the urge to "bear down".
It is advisable for you to take plenty of fluids daily along with a high fiber diet. This could help in maintain the stools soft.
"this morning for some reason I had to push and the result was terrifying pain so intense that I almost fell off the toilet and onto the floor. "
The above statement suggests some rectal pathology - like fissures, but according to gastroenterologist you were found to have no fissures or fistulas. Still it could be a fissure if you are passing hard stool.
Jason, did you ever find out what caused this pain...and are you still having it.
You are the only other person besides my husband whom I found on the internet who had this after prostate surgery. My husband had an RPP and 6 months later is STILL having intense pain...and they think it is Pudendal Nerve neuropathy...and he is getting steroid injections in Minnesota for it. Is helping a little...but still in much pain. What has happened to you since this writing?
Hi' I'd be extremely interested in hearing a follow up to see how you're doing now. I myself was diagnosed with an extremely rare cancer at 19. This lead to massive amounts of intensive chemotherapy and caused my being housebound with chronic pain and disability for the past 13 years. I've just gone 33 and had a radical prostatectomy on the 3rd of February 2011. (This is unrelated to the disability and pains that keep me housebound.) Since my prostatectomy, for the first 5 weeks I had zero rectal pain. In fact, because my enlarged prostate was removed, my rectum and it's function was better than it's ever been......but then suddenly after 5 weeks of a pain free and normal functioning rectum I had a sudden onset of the most horrendous rectal pain. Much worse than anything I experienced due to the prostate problems. So for the last few weeks I've had constant rectal pain without relief and also this is giving me the constant urge to empty my rectum, even when i haven't eaten for a few days and the laxatives have completely voided my bowels, I still feel this urge and pain.
If anyone else has experienced this, i.e. rectal pains weeks after a prostatectomy then I'd love to hear form you.
I had to have the nerve bundles removed to help with potential pain and for other reasons i'll not go into. It's just extremely strange that I had no pain in the rectum at all for 5 weeks post surgery and then a sudden onset for no reason - i had not strained myself or done anything out of the normal. i'm totally bedbound so there's not much movement going on in which I coiuld have done myself damage. In fact, I'd had a good day (for me) up untill this onset of rectal pain at about 10:30pm. Not that the times is improtant. If it was due to internal scaring then surely it would have been a gradual onset of pain, slowly getting worse - not 0 to 100 in one day and indeed in one hour. I'm very concerned and have written to my doctor but if anyone out there can help me i'd love to hear from you!
I just had my prostate removed last week, and had my catheter removed 2 days ago. Not quite 4 hours after its removal, I was trying to pee and was struck with this indescribable pain in my rectum. It came on gradually and the more I tried to pee, the more intense the pain became. It got so bad I thought I was going to faint. I literally felt the blood drain out of my head and upper body, my ears started ringing, and I barely made it to the bed from the bathroom. I fell asleep and woke up needing to pee 2 hours later, only to have the same pain all over again. I went to the ER to have another catheter installed so I could get the pressure off my bladder (this is what my urologist advised me to do if I should suddenly find myself unable to pee). I had 3 more similar attacks while I was waiting for the doctor on duty at the ER to authorize the foley cath, and at this point was in so much pain, I was literally begging to die.
No one can explain the cause of this pain and yours was the closest I could find to my experience after several searches of the internet. I have not had a recurrence since the foley catheter was put back in place and am now terrified to have it removed. By the way I was not having any pain with bowel movements, but havent had one now in 2 days because I am so afraid of having that pain all over again. I am still waiting on a call back from my surgeon, so I have no idea what to expect next.
Thank you for any advice or comments you might have.
I am experiencing that very same pain. My prostatectomy was October 2011, and to this day I have intense pain that comes and goes. Sometimes it radiates down the urethra. Has your pain stopped or decreased --I note that you posted back in 2007?
You guys are not alone. Had my RARP on Deecmber 18 and am having rectal, anus, and distal urethra pain. My Doc says this is "normal".
I'd REALLY like to know how many orderlies had their way with me while I was under anesthesia, or if they enlisted Dr. Pol to reach in up to his armpits to check my thyroid gland. Or, perhaps, they had me propped up on a pole Marquis De Sade-style for the procedure. No, really, it would be nice if some surgeon, ANY surgeon, responded to this forum with an explanation of pain in areas that never(?) even saw a scalpel.
Cortisone cream is of no help, but arnica lotion and cream (external) seem to mitigate much of the pain in all three areas
Hi, please post your question as a new post and explain what pain your having.
I had my robotic surgery June 1, 2015, I had no rectal & scrotum pain until post-opt day #27, its now day 91 and its been "horrible pain" every day since! Have had, blood test, urine test, CT scan, cystoscopy all good.
If any of you can share, who you went for help I soooo appreciate it! My doctor just says its part of the healing process, stated I'm part of the 3%-5% club???? Please help? Any Doctor info would be greatly appreciated, I need some help on this one!
My husband is in the same pain after a radical prostatectomy almost one year ago. He is almost beside himself with the pain and being uncomfortable all the time. There seems to be NO doctors out there that have a clue what it is or even seem to care enough to help him. With my extensive web searching, this is what I think it is - Levator Ani Syndrom. If a doctor does diagnose it, it seems there isn't really a cure or a standard procedure for treatment. (Of course.) We want to avoid more pain killers and drugs if possible. Looks like Stanford University might be able to help.