Really bad pain in perineum: How many have has this?

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mikey1955
Veteran Member


Date Joined Dec 2008
Total Posts : 673
   Posted 12/11/2008 6:07 PM (GMT -6)   
 
Hi all,
 
Yesterday and today I had 2 bouts of really bad pain in that place between the srcotum and rectum; the kind that brings me to my knees and pretty much limits my day. I was diagnosed with PC recently. Everytime I've had the pain, it comes on very quickly...takes about 4 xtra strength tylenol and sitting on a donut pillow or toilet seat until tylenol kicks in. Usually subsides after an hour...and woozy for a few more. Happened once while driving and almost called 911 when out of town.
 
It was this pain several other times that brought the earlier diagnosis of prostatitis...and led to PSA tests, DRE, Bioposy, diagnosis of PC and bone scan (no results yet). Had chills, bad back, sore testicles, really frequent urination and leg pain with it...yet no fever and todays urinalysis shows nothing in way of infection. Since all this started last Nov., there's always been this as a background discomfort accompanied with general pressure in rectum...until the flareups.  And by the way, it feels like there is a pimple, for lack of better word, at biopsy site inside my rectum. Everytime I engage a sphincter muscle or the one that starts and stops urination, I feel a sting very similar to when the first biopsy needle went in...no local used. Also, feel it when I just move around.
 
Is this just a symptom of enlarged prostate(44 CC I believe) pressing down on perinieum, or is this something I can expect post-op or permanently?
 
See Uro on Wednesday for bone scan results...both Uro and GP have been told all the above.
 
Any comments appreciated.
 
M
 
 
 
Lower left groin hernia; mesh and large scar: surgery early 2006
Nov/Dec 07 and March 08 and now Dec 08: Severe perineal pain (between scrotum and rectum). Septra/Bactrim for 8 months for diagnosed prostatitis previously.
PSA start of 08: 5.3
PSA June of 08: 7.3
6 DRE all benign or nothing felt
TRUS Biopsy Nov 08: Got copy of pathology recently (see below).
General Health: pretty good, 5' 10", 180 lbs, slim.
Bone scan Dec 08: waiting for results
 
Biopsy Pathology: 5 of 8 cores positive, adenocarinoma in both lobes
1) 30%, GS 3+3, perineural invasion identified
2) 40%, GS 3+3
3) 60%, GS 3+3
4) 65%, GS 3+3
5) 30%, GS 3+3
 
Open RP recommeded. Looking at nerve sparing da Vinci in London, Ontario.
Wonderful wife...and 1st grandchild on the way.
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 12/11/2008 6:55 PM (GMT -6)   
Hello Mikey, and welcome,

I experienced pains just like yours for about 3 months before I got my dx for PC, my doctor didn't always believe me, but I knew what and where I was feeling the pains. I am 4 weeks post surgery now, and it still hurts somewhat in the area that you describe. Hopefully your doctor can come up with an answer.

If you have to deal with PC, this is the best place on the web to me, I will attest to that.

David in SC
Age 56, 56 at DX
 
PSA 2007 5.8
PSA 9-2008 14.9
 
3rd Biopsy 9-2008 Positive
7 of 7 cores positive, ranging from 40 - 90%
2 tumours noted, Gleason 4+3 and 3+4
 
Open RP surgery completed on Friday, November 14, 2008 at
St. Francis Hospital, Greenville, SC, Dr. Ronald Smith - Surgeon,
Non-nerving sparing, 4 days in hospital, staples removed 11/24/8
 
Post-surgery Pathlogy Report:
Gleason 3+4=7, pT2c pN0 pMx, Prostate 42 grams, tumor 20% cancer
Contained in capsular, neg. margins apex, bladder neck, right lobe, neg. in seminal vessels and lymph nodes. Left lobe: infiltrating tumor miscroscopically appears to extend to marked left posterior margin


mikey1955
Veteran Member


Date Joined Dec 2008
Total Posts : 673
   Posted 12/11/2008 7:46 PM (GMT -6)   

Thanks Purgatory...best of luck with your recovery and all the best for Christmas and all other holidays that are coming to all.

These pains I've had are QOL level pains. Probably a dozen day wrecking ones in last 12 months. I'd say pain level at max of all were 9 or 10...completely debilitating...followed by 6-8 and 4-6 with normal days being uncomfortable and distracting...so, productive days lost that always need to be made up asap.  Bottom line about 30-40 bad days with this specific pain in the last year. GP believes me and has been my GP since I was 8. Uro on phone today called me, I was grateful. He said he didn't have enough office hours to see me this week, but would see me for my scheduled 17th (bone scan review and discuss). I know he's busy and he suggested the ER as it may be something else? I'm sure he's seen scan results already. Perineum pain in men does not have a lot info as to treatment since I last looked a couple weeks ago.

Outside of my meltdowns I've had since dx, this issue is important. As is incontinence. As is ED. With, in all honesty now, no cancer being most important.

Most I've read has been PC has been asymptomatic, physically, unless I've read posts here wrong. That's not my case, I believe. My choice of surgery has to include this...if it can be.

 

Thanks for the reply

 

M

 


 
Lower left groin hernia; mesh and large scar: surgery early 2006
Nov/Dec 07 and March 08 and now Dec 08: Severe perineal pain (between scrotum and rectum). Septra/Bactrim for 8 months for diagnosed prostatitis previously.
PSA start of 08: 5.3
PSA June of 08: 7.3
6 DRE all benign or nothing felt
TRUS Biopsy Nov 08: Got copy of pathology recently (see below).
General Health: pretty good, 5' 10", 180 lbs, slim.
Bone scan Dec 08: waiting for results
 
Biopsy Pathology: 5 of 8 cores positive, adenocarinoma in both lobes
1) 30%, GS 3+3, perineural invasion identified
2) 40%, GS 3+3
3) 60%, GS 3+3
4) 65%, GS 3+3
5) 30%, GS 3+3
 
Open RP recommeded. Looking at nerve sparing da Vinci in London, Ontario.
Wonderful wife...and 1st grandchild on the way.
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 12/12/2008 8:20 AM (GMT -6)   
Do you know what your biopsy gleason score is? That would help to understand the reality of your choices ahead. Like mine, you have a lot of cancer present in those biopsy cores. With me, in the end, the open Rp with non-nerve sparing was the only option. Sometimes the choices one has to make with PC are like the classic do you want to be shot or stabbed, you have to pick one or the other. Not a fair system, but then none of us asked to be in this situation, just trying to deal with the new reality of having a cancer that comes along with bad quality of life issues like incontinence and ED. I know in the end, you will come to a conclusion that works best for you and your life. We are all here for you.

David in SC
Age 56, 56 at DX
 
PSA 2007 5.8
PSA 9-2008 14.9
 
3rd Biopsy 9-2008 Positive
7 of 7 cores positive, ranging from 40 - 90%
2 tumours noted, Gleason 4+3 and 3+4
 
Open RP surgery completed on Friday, November 14, 2008 at
St. Francis Hospital, Greenville, SC, Dr. Ronald Smith - Surgeon,
Non-nerving sparing, 4 days in hospital, staples removed 11/24/8
 
Post-surgery Pathlogy Report:
Gleason 3+4=7, pT2c pN0 pMx, Prostate 42 grams, tumor 20% cancer
Contained in capsular, neg. margins apex, bladder neck, right lobe, neg. in seminal vessels and lymph nodes. Left lobe: infiltrating tumor miscroscopically appears to extend to marked left posterior margin


mikey1955
Veteran Member


Date Joined Dec 2008
Total Posts : 673
   Posted 12/12/2008 5:28 PM (GMT -6)   

Hi David,

All Gleasons were 3+3 involving between 30% and 65% of cores...is a quote from what it says on pathology report. Yes, high % number of cancerous tissue. Far higher than most that have had surgery, unless I've misread here. Many have had RP with 5% or less on only 1 of many cores. I know it's hit and miss.

I do now recall "...let's go at this shadow..." several times during the TRUS biopsy. I should have asked more but, that wouldn't have changed this present outcome. I'm wishing for the best on bone scan results.

Thanks again all.

M

 


 
Lower left groin hernia; mesh and large scar: surgery early 2006
Nov/Dec 07 and March 08 and now Dec 08: Severe perineal pain (between scrotum and rectum). Septra/Bactrim for 8 months for diagnosed prostatitis previously.
PSA start of 08: 5.3
PSA June of 08: 7.3
6 DRE all benign or nothing felt
TRUS Biopsy Nov 08: Got copy of pathology recently (see below).
General Health: pretty good, 5' 10", 180 lbs, slim.
Bone scan Dec 08: waiting for results
 
Biopsy Pathology: 5 of 8 cores positive, adenocarinoma in both lobes
1) 30%, GS 3+3, perineural invasion identified
2) 40%, GS 3+3
3) 60%, GS 3+3
4) 65%, GS 3+3
5) 30%, GS 3+3
 
Open RP recommeded. Looking at nerve sparing da Vinci in London, Ontario.
Wonderful wife...and 1st grandchild on the way.
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 12/12/2008 5:34 PM (GMT -6)   
mikey,

sorry, didnt notice your gleasons on the signature before. you can see that i had fairly high percentages of cancer in the cores compared to others. but cancer is cancer, just like poison is poison. ive got the wonderful wife too, who happens to be a fantastic nurse by trade to boot, and 2 grandchildren, boy 3 and girl 6, they got to visit me one time in the hospital, and they keep asking if grandpa is getting better.

best to you,

david
Age 56, 56 at DX
 
PSA 2007 5.8
PSA 9-2008 14.9
 
3rd Biopsy 9-2008 Positive
7 of 7 cores positive, ranging from 40 - 90%
2 tumours noted, Gleason 4+3 and 3+4
 
Open RP surgery completed on Friday, November 14, 2008 at
St. Francis Hospital, Greenville, SC, Dr. Ronald Smith - Surgeon,
Non-nerving sparing, 4 days in hospital, staples removed 11/24/8
 
Post-surgery Pathlogy Report:
Gleason 3+4=7, pT2c pN0 pMx, Prostate 42 grams, tumor 20% cancer
Contained in capsular, neg. margins apex, bladder neck, right lobe, neg. in seminal vessels and lymph nodes. Left lobe: infiltrating tumor miscroscopically appears to extend to marked left posterior margin


mikey1955
Veteran Member


Date Joined Dec 2008
Total Posts : 673
   Posted 12/12/2008 6:05 PM (GMT -6)   

Hi David,

Going out of town to visit my just about to give birth daughter (1st grandchild) till tomorrow. Haven't told the kids and my wife is (all past week) there hoping birth will happen anytime. I'm not planning to tell them until after January 10...next GP appointment.

I'll keep you posted.

Did I mention my wife is a sweetheart?

So many thanks.

 

Talk soon.

M

 


 
Lower left groin hernia; mesh and large scar: surgery early 2006
Nov/Dec 07 and March 08 and now Dec 08: Severe perineal pain (between scrotum and rectum). Septra/Bactrim for 8 months for diagnosed prostatitis previously.
PSA start of 08: 5.3
PSA June of 08: 7.3
6 DRE all benign or nothing felt
TRUS Biopsy Nov 08: Got copy of pathology recently (see below).
General Health: pretty good, 5' 10", 180 lbs, slim.
Bone scan Dec 08: waiting for results
 
Biopsy Pathology: 5 of 8 cores positive, adenocarinoma in both lobes
1) 30%, GS 3+3, perineural invasion identified
2) 40%, GS 3+3
3) 60%, GS 3+3
4) 65%, GS 3+3
5) 30%, GS 3+3
 
Open RP recommeded. Looking at nerve sparing da Vinci in London, Ontario.
Wonderful wife...and 1st grandchild on the way.
 


rocket1952
Regular Member


Date Joined Oct 2008
Total Posts : 26
   Posted 12/12/2008 9:31 PM (GMT -6)   
Mikey, I'm in a similar situation. I've had a history of prostatitis for many years. about three months ago I started to feel some anal pain. Since I also have IBS my PCP attributed it to this; however, I asked for a PSA test to see if this had risen and might indicate prostatitis. Surprise my PSA had risen to 6.5. So now I'm trying to distinguish prostatitis from PCA and am quite concerned (I already posted about this before and today just had my second PSA test drawn). I am wondering if your pain is from prostatitis which coincidently prompted you to investigate and find PCa. It's difficult to cure prostatitis in many cases. I hope your pain is not from cancer (and same for myself). Best of luck and let us know what happens.

Rich

Dirtmover
Regular Member


Date Joined Apr 2008
Total Posts : 158
   Posted 12/14/2008 3:30 PM (GMT -6)   
I would be happy to comment on this. The perinum pain was the longest lasting and the most uncomfortable to me. Typically you can expect, at least in my case, three months. I ride a motorcycle and couldnt get back on it till post three months. To be honest with you, the perinum pain actually outlasted the incontinence. Good Luck - its just takes awhile but will go away. Hope this helps! /////////////// Dirt

Diagnosed November 2007   (43 years old )
PSA 3.9 / Gleason 6 / TC1 6 cores 1 shows 25%
Sugery scheduled 5/29/08 - City of Hope - Dr. Mark Kawachi
 "First show of the day"
 and now for the new ive been waiting for
 FINAL PATH REPORT:gleason upgraded to 3+4 T2c bilateral disease,tumor involvment 5%
extra prostatic extention:absent
seminal vesical invasion :absent
pathological staging:pTNM pT2 ORGAN CONFINED
margins free of carcinoma
usable erections ;6-6-08 with little blue pill
continence; 1 pad a day, dry at night


mikey1955
Veteran Member


Date Joined Dec 2008
Total Posts : 673
   Posted 12/14/2008 5:26 PM (GMT -6)   

Hi dirtmover,

 

Thanks for the reply. The pain in the perineum I've had led to all the subsequent tests and my diagnosis. It is this pain that is the most debilitating symptom.

 

Even da Vinci may put a part of the system through the perinium...if this aggravates pain I already have, I'd like to hear from others, too.

 

Thanks for your reply.

 

M


 
Lower left groin hernia; mesh and large scar: surgery early 2006
Nov/Dec 07 and March 08 and now Dec 08: Severe perineal pain (between scrotum and rectum). Septra/Bactrim for 8 months for diagnosed prostatitis previously.
PSA start of 08: 5.3
PSA June of 08: 7.3
6 DRE all benign or nothing felt
TRUS Biopsy Nov 08: Got copy of pathology recently (see below).
General Health: pretty good, 5' 10", 180 lbs, slim.
Bone scan Dec 08: waiting for results
 
Biopsy Pathology: 5 of 8 cores positive, adenocarinoma in both lobes
1) 30%, GS 3+3, perineural invasion identified
2) 40%, GS 3+3
3) 60%, GS 3+3
4) 65%, GS 3+3
5) 30%, GS 3+3
 
Open RP recommeded. Looking at nerve sparing da Vinci in London, Ontario.
Wonderful wife...and 1st grandchild on the way.
 


rocket1952
Regular Member


Date Joined Oct 2008
Total Posts : 26
   Posted 12/14/2008 7:06 PM (GMT -6)   
I may be mistaken but I think that Dirtmover is talking about postoperative pain, whereas Mikey is talking about preoperative pain that may or may not be cancer caused (it may be prostatitis or other) but did lead to tests that detected Mikey's cancer. Is this right? Mikey did your biopsy make this pain worse?

Rich

mikey1955
Veteran Member


Date Joined Dec 2008
Total Posts : 673
   Posted 12/15/2008 9:24 AM (GMT -6)   
Hi Rich,

I was originally diagnosed with prostatitis (PSA of 5.3 at the time). This all started with bad pain in the perineum and led me to dx of cancer after biospy almost a year later. The pain is bad but seems to come more often since biospy. Urinalysis last week ruled out infection.

I was wondering how many experienced this pain before RP and after, actually.

Thanks for your reply.

Mikey
 
Lower left groin hernia; mesh and large scar: surgery early 2006
Nov/Dec 07 and March 08 and now Dec 08: Severe perineal pain (between scrotum and rectum). Septra/Bactrim for 8 months for diagnosed prostatitis previously.
PSA start of 08: 5.3
PSA June of 08: 7.3
6 DRE all benign or nothing felt
TRUS Biopsy Nov 08: Got copy of pathology recently (see below).
General Health: pretty good, 5' 10", 180 lbs, slim.
Bone scan Dec 08: waiting for results
 
Biopsy Pathology: 5 of 8 cores positive, adenocarinoma in both lobes
1) 30%, GS 3+3, perineural invasion identified
2) 40%, GS 3+3
3) 60%, GS 3+3
4) 65%, GS 3+3
5) 30%, GS 3+3
 
Open RP recommeded. Looking at nerve sparing da Vinci in London, Ontario.
Wonderful wife...and 1st grandchild on the way.
 


Frank1205
Regular Member


Date Joined Feb 2008
Total Posts : 308
   Posted 12/15/2008 10:40 AM (GMT -6)   

Dear M,

Pre-Operative condition

My story is very similar to what you are explaining.  I had unexplained pain in this area for quite a while. It would stay, go and return for no explained reason.  Riding a bicycle or sitting for a long trip in a car was very hard.  I had many, many tests to determine the cause. Neuro, gastro, uro,internal Docs.  Most thought I was goofy.  But all just blamed it on a "pelvic cradle muscle issue".  I had my last Biopsy before my sugery and thought I was going to pass out.  Not from the shots, big deal,  it was from the manuvering of the probe. My Uro guy thought I was a over reacting to the procedure.  I walked out never to see him again.

Post Operative condition

I am 9 months post op and the pain seems to be showing its ugly head more and more.  Same type of thing.  I swear that it is internal and may very well be in the rectum.  Cant sit on hard surfaces nor sit very long.  Best days are those when I am up but pain does come back when I am up for long periods. My PSA's are below 0.01 and monitor every 3 months.  I am going to pursue with a Butt Doc to investigate rectum conditions.  My constitution if you will is always changing.  At times almost seems like a slight blockage.

Here is my crazy thought.  I think I had, and have internal hemroids or growths in my rectum that swell when I sit for long periods and also when I take "Viagra" (100 mg).  In addition surgery may have had some type of effect on them as well.  I am not yet as bad as I was pre-op but still I have great concern.

Frank

 


Age 54
DRE normal , 2004 Biospy negative - 2008 Biopsy positive (01-08-08)
10 cores, 1 positive and at 1% of that one core
PSA @ surgery 6 
Bone and Ct scans negative
clinicaly Staged at T1C - Gleason 3+3 = 6
Robotic Da Vinci performed March 27th, 2008, University of Chicago.
Catheter out in 7 days normaly expected leakage
Post Pathology T2C, Gleason 7, 10 % of both portions of prostate
Seminal vessels clear, fat tissue clear, single positve margin at apex measuring less than 1/2mm. 
Six week PSA < 0.1 , 4 month PSA <.05 Gen II test. 6 month PSA  <0.01
Watching PSA closely,  will do salvage radiation if necessary.
Fair to Good results with Viagra,  side effects are bothersome at times. 
 


mikey1955
Veteran Member


Date Joined Dec 2008
Total Posts : 673
   Posted 12/15/2008 11:54 AM (GMT -6)   
Hi Frank,

I don't think your crazy thought is that crazy. I see my Uro Wednesday to get bone scan results and ask him about what feels to me like a pimple in my rectum (see my first post in this thread). I did look up internal rhoids and I planned to ask him. Also, there's a constant pressure in my rectum and maybe it is related.

I was the same way with riding a bike and sitting on a hard surface too long. The pain, when it does come, comes on very quickly. If it's a bad attack, I'm down within a few minutes of onset.

As for my biospy, the needle shot didn't hurt much... the wrenching of the probe inside was very painful for positioning it for the last couple of biopsy cores. I'm still pulling plaster dust out of my forehead from the wall on the other side of the lab.

Stay in touch.

Mikey

Thanks for your comment.

Mikey
 
Lower left groin hernia; mesh and large scar: surgery early 2006
Nov/Dec 07 and March 08 and now Dec 08: Severe perineal pain (between scrotum and rectum). Septra/Bactrim for 8 months for diagnosed prostatitis previously.
PSA start of 08: 5.3
PSA June of 08: 7.3
6 DRE all benign or nothing felt
TRUS Biopsy Nov 08: Got copy of pathology recently (see below).
General Health: pretty good, 5' 10", 180 lbs, slim.
Bone scan Dec 08: waiting for results
 
Biopsy Pathology: 5 of 8 cores positive, adenocarinoma in both lobes
1) 30%, GS 3+3, perineural invasion identified
2) 40%, GS 3+3
3) 60%, GS 3+3
4) 65%, GS 3+3
5) 30%, GS 3+3
 
Open RP recommeded. Looking at nerve sparing da Vinci in London, Ontario.
Wonderful wife...and 1st grandchild on the way.
 


Frank1205
Regular Member


Date Joined Feb 2008
Total Posts : 308
   Posted 12/16/2008 9:56 AM (GMT -6)   

Mikey,

Sounds like we have a very similar condition. Please let me know what your Doc says.  I will see the Butt Doc after the Holidays and will let you know as well.

Take care.

Frank


builder
New Member


Date Joined Dec 2008
Total Posts : 6
   Posted 12/16/2008 11:04 AM (GMT -6)   
hI MICKEY. l am new at this so i do not know if l replied to you or not. l had open surgery oct.1 08. Prior tests showed 70% cancer,psa 8.8,gleason 6. Now psa shows 0. My cancer was outside f prostate.No nerve damage,bones clear. l have to go back in Feb. for my 3 month test. Get the open surgery,its called hands on surgery. Worked for me. He felt after the surgery that he got it all. Manrod
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