pain and ED after surgery

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Loudie
New Member


Date Joined Nov 2009
Total Posts : 4
   Posted 11/21/2009 9:43 AM (GMT -6)   
I'm the partner of a man recovering from prostate surgery (robotic) 4 weeks ago. His lingering pain in the rectal area and with urination is a problem.  What pain medication seems to be most effective?  He's on Cipro for possible infection, but still having pain.
Ibuprofen nor does Vicodin help.  He uses an ice pack when it gets really bad.
Has anyone tried acupuncture with good results?
Also, as his female partner, the ED is a difficult issue.  He is despondent sometimes, and can't seem to ask for help, or even read about the alternatives.  Should he not worry about this at this time?  When should he seek medical assistance for ED?
What can I do to help him with this?  Any good books or websites?

TeddyG
Regular Member


Date Joined Apr 2009
Total Posts : 133
   Posted 11/21/2009 9:51 AM (GMT -6)   

Loudie,

Our partners have been a very important part of our recoveries and I commend you for reaching out on behalf of your partner. Regarding the pain, remember that he had a significant and difficult surgical procedure that will take months to recover from. There was alot more cutting, splicing and sewing inside than appears on the outside. If it is continuous pain he should definitely talk to his Doc. Regarding ED, it is more common than not. Recovery takes a while and many here have taken a year or more. If your partner thought that he was simply going to bounce back after this procedure, he could use an adjustment in expectations. One day at a time is what we all say and he needs to focus on recovering from surgery first.

Ted


Background:
Age 55, two teens, very fit cyclist (avg 2000+ miles per year) and weight, diet, etc. consistent with good habits. Stressful job as attorney; very supporting wife who is helping me through every stage of this war.
Stats:
2006 PSA - 1.5
2007 PSA - 2.3
2008 PSA - 5.3 (18 mos.)
2009 Jan. 20 - Biopsy 12 samples
        Feb 3 Dx 2/12 samples positive, low volume  (5% and 7-10%)
Gleason 3+4, later downgraded by second opinion at Johns-Hopkins to 3+3, but "it's still PCa" as my Doc said.
Laproscopic surgery April 9,  University of KY Medical Center, Lexington, 3 days in hospital, catheter removal April 21.
Pathology: clear margins, no cancer in prostate: told that this is very rare and Doc has only seen it in 3 out of over 1400 cases; I rearched the concept of "vanishing cancer" and found a tumor classification of tP0 and asked Doc if it applied to me. He said that it was unlikely because if a pathologist had done a much more detailed analysis of the tissue, he would likely find more foci somewhere, and biopsy found "needle in the haystack as opposed to the tip of the iceberg"; Nevertheless, it is a blessing;
Regardless of the science, my family says "miracle."
Now working w/ post-surgery issues....
 


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4110
   Posted 11/21/2009 9:52 AM (GMT -6)   
Loudie, Not sure what to say about the pain. Might suggest that you get in touch with the Dr. I had open surgery and never had any pain. On to the next topic. ED is a common problem. Yes it is a difficult issue most of us have been despondent about the ED stuff. It takes time to heal from the surgery some times there is no ED others have the problem for the rest of their life. My Dr. told me that he saved the nerves. I thought that would mean Back in the Saddle ASAP. That has not been the case. There are some therapy methods that the Dr will recommend. The Magic pills (Viagra, Ciallis, Lavetra), The Pump to keep blood flow to the penis. and after that Muse or injections. Those are a bit down the line.

I hope this was helpful. My e-mail is active if you need to contact me.

Jeff T
Cajun country
Jeff T Age 57

9/08 PSA 5.4, referred to Urologist
9/08 Biopsy: GS 3/4=7
10/08 Nerve sparing open RRP- Path Report: GS 3+3=7 Stg. pT2c, margins clear
3 mts: PSA .05 undetectable

10th month PSA <0.01
1year psa <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next. Next step injections.


kodiak
Regular Member


Date Joined Nov 2009
Total Posts : 27
   Posted 11/21/2009 10:32 AM (GMT -6)   

Loudie,

        4 weeks is a very short time as far as the recovery process , if you read many of the posts some take years .I am 3 weeks out of robotic surgery and really don't have any pain just some discomfort ,a little leakage 1 Pad per day.If the pain persists I would go see the doc for his opinion.After my biopsy I had pain for weeks that finally went away so go figure.

                                                   Charlie


Age 52
PSA4.5
Gleason 6
Robotic surgery Oct29, 2009
Pathology margins good
1 week off cath 1 pad per day
St Clairs hospital, Denville NJ
Dr Colton


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 11/21/2009 12:15 PM (GMT -6)   
It's hard to tell a man who wants an erection NOW ! to be patient, but really, we don't have a lot of choice. Especially with the pain, he needs to give it a rest until the body finishes healing.

I know he may be despondent, and this may not help, but it may take up to a year according to most experts, and many guys on this site. Just count every day less than a year a blessing if he gets function back to "normal'.

Just be there for him, insure him that you love him, no matter what his ED is doing. Holding, snuggling, petting, all make him feel as tho he is not letting you down because he can't perform.

Good luck on your journey together !
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injections


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 11/21/2009 3:25 PM (GMT -6)   
Loudie, I'm the wife of a PCa survivor. My husband had virtually no pain after his surgery (robotic). Was sent home with a script for Oxycontin that I filed but he never used. So, I don't have any advice re your partner's pain except that I can echo what has already been said: this surgery is very complex and lots of vital organs were touched. Four weeks after an operation of this kind is really still quite early in the game. My husband wasn't pronounced "healed" for six weeks so you still have a bit to go. Which leads me to ED...

This can be a very difficult issue, especially if either partner doesn't want to talk about it. However, it is important again to remember what this surgery involved. As to what you can do to help, depending on the relationship you have with his urologist, perhaps you could have a one-on-one with him (or her)? My husband uses Viagra (insurance pays for 5 pills every 30 days!) so he only gets to take it a few times each month. Many doctors see ED medication as therapeutic right after surgery as it helps increase blood flow which aids in the healing process.

During the consultation with our uro/surgeon, when the subject of ED came up as a possible side effect, we were told that since my husband had enjoyed good erections before surgery, he should enjoy them again. Guess what: while he had no problems before, he ain't what he used to be. We're still dealing with ED 21 months after surgery but it is improving. In some cases, it can take a couple of years til junior gets his groove back!

On the emotional side of ED, it is important to let your man know that not being able to achieve an erection (with or without medication) does not define the relationship. This could be an opportunity to explore other ways of expressing your love and giving pleasure that you might not have thought of before.

I hope my reply was of some help. Come back and let us know how things are going.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (single small EPE in posterior left). Perineural tumor infiltration present. Apex margin, bladder neck and SV negative. Final Gleason 3+4 SA. PSA: 0.0 til July 2009. August 2009 PSA was 0.1, in September it was 0.3 Met with radiation oncologist, CT scan and bone scan clean. Third PSA on October 16 - PSA BACK TO UNDETECTABLE! Next PSA scheduled for early December. No radiation treatment at this time!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 11/21/2009 3:50 PM (GMT -6)   
Hello and welcome, Loudie.

Your guy just had one of the more complext surgeries there are. Just 4 weeks ago. Pain is a very personal and subjective thing, regardless of open or robotic surgeries. As far as pain meds go, there is a good spectrum of choices, if what his doctor gave doesn't seem to help, get your doctor to script something different. Post surgery, I had the best luck with Loratab 7.5. I was on the 10's before, but they didnt seem to work as well as the 7.5. Any of those types of pain pills are very constipating, so to compensate, I would take 2 OTC stool softeners each night, and it did a pretty good job of balancing out things.

When you get the chance, go to the Control Panel here at the top, and set up some basic info on your guy. It would help us understand his journey so far.

As far as ED, way, way too soon to be thinking or worrying about that part. There will be time ahead for that too. As a group, we range the whole spectrum: from guys that have no ED from day 1, to guys that still need help 2 years later. Most are somewhere in between.

The most important thing: is finding out that his cancer is gone. Never lose sight of that. Most men and their wives/girlfriends would agree, that they would rather deal with the frustration of some incontinence and/or ED and be alive free of their cancer. The alternative to that thinking sucks, I think you would agree.

In a good, lasting ,loving relationship, we all realized, male and female, that our intimacy and level of love is not dictated by whether the man can or can't have an errection, etc. True love spans those problems, and there are always alternatives, great time in life to expand one's imgagination a bit, and be willing to try new dimensions.

Your guy has been through a hell of a lot on the inside, so some anger, frustration, and even depression can seep out, which is normal and to be expected. But he needs to understand, that you have been through a lot too, and he needs to think of how all of this effects you.  Together, you too can come together and beat this this thing.

Hope we can help you here. THis is the best of the best on the web for patient to patient care.  We are here for the both of you.

David in South Carolina


Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out  38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - began IMRT SRT - 39 sess/72 gys cath #8 33 days, 11/2- SP Cath #9 in place

Post Edited (Purgatory) : 11/21/2009 1:54:12 PM (GMT-7)


Loudie
New Member


Date Joined Nov 2009
Total Posts : 4
   Posted 11/21/2009 7:17 PM (GMT -6)   
Thank you all for your quick response. It is very comforting to know someone else is out there. I applaud your willingness to share your personal stories.
 
 PJ had Robotic prostatectomy on 10-21-09.  Gleason was 3/3. T1c. All cancer cells confined to prostate.  Pathology post op all clear.  UTI treated with Cipro.  Occ use of Ibuprofen for pain. Pain persists deep rectal area, especially with urinating.  Some razor sharp penile pain intermittently.  He is 4 weeks post op.  Back at work 1 + weeks post op. He is in healthcare.  Had poor communication from 1st urologist.  He had to hunt down results of pre op testing on his own, and the urologist never called him to tell him he had cancer.  Very frustrating start to it all.  He has 2 girls, ages 12 and 14.  My children are 19 and 22.  We are both previously divorced.  We have been together for 5 years.
 
 


mikey1955
Veteran Member


Date Joined Dec 2008
Total Posts : 673
   Posted 11/21/2009 8:01 PM (GMT -6)   

I'm 6 months out from open RP. I was lucky and had full bladder control within 48 hrs of catheter removal. I have profound ED. Before surgery, I had NO ED of any sort. Spontaneous and immediate. I am looking at various treatments and believe I will be good...and I will be... but, it will take some time.  He is only a month out from a very major surgery.

I still have rectal pain. Some of it knocks me off my feet.  My surgeon says it is not unusual and in my case a fair bit of prostatic tissue had to be scraped from my rectum...most probably due to multiple bouts of prostatitis.

Time and patience.

Mike


-Nov/Dec 07, March 08 and Dec 08: Severe perineum pain . Septra/Bactrim for 8 months for diagnosed prostatitis.
-PSA start of 2008: 5.3..... PSA June of 2008: 7.3
-14 DRE all benign or nothing felt
-TRUS Biopsy Nov 08: 5 of 8 cores positive GS 3+3 or 6. 30-65%. Perineural invasion.
-General Health: pretty good, 5' 10", 180 lbs, slim.
-Open RP surgery: May 09 both nerve bundles spared. Bilateral lymph node dissection performed. Discharged 48 hours after surgery.
-Post Surgery Pathology: pT3a N0 MX, extraprostatic extension (EPE), stage III prostate cancer, lymph nodes clear, seminal vesicles clear, Gleason upraded to 3+4 GS 7. EPE within surgical margins. Other than prostate and EPE, all tissue removed negative for cancer involvement.

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