Open main menu ☰
HealingWell
Search Close Search
Health Conditions
Allergies Alzheimer's Disease Anxiety & Panic Disorders Arthritis Breast Cancer Chronic Illness Crohn's Disease Depression Diabetes
Fibromyalgia GERD & Acid Reflux Irritable Bowel Syndrome Lupus Lyme Disease Migraine Headache Multiple Sclerosis Prostate Cancer Ulcerative Colitis

View Conditions A to Z »
Support Forums
Anxiety & Panic Disorders Bipolar Disorder Breast Cancer Chronic Pain Crohn's Disease Depression Diabetes Fibromyalgia GERD & Acid Reflux
Hepatitis Irritable Bowel Syndrome Lupus Lyme Disease Multiple Sclerosis Ostomies Prostate Cancer Rheumatoid Arthritis Ulcerative Colitis

View Forums A to Z »
Log In
Join Us
Close main menu ×
  • Home
  • Health Conditions
    • All Conditions
    • Allergies
    • Alzheimer's Disease
    • Anxiety & Panic Disorders
    • Arthritis
    • Breast Cancer
    • Chronic Illness
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Migraine Headache
    • Multiple Sclerosis
    • Prostate Cancer
    • Ulcerative Colitis
  • Support Forums
    • All Forums
    • Anxiety & Panic Disorders
    • Bipolar Disorder
    • Breast Cancer
    • Chronic Pain
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Hepatitis
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Multiple Sclerosis
    • Ostomies
    • Prostate Cancer
    • Rheumatoid Arthritis
    • Ulcerative Colitis
  • Log In
  • Join Us
Join Us
☰
Forum Home| Forum Rules| Moderators| Active Topics| Help| Log In

ED recovery how true it is

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
profile picture
samadabad
New Member
Joined : Nov 2007
Posts : 10
Posted 12/23/2007 11:27 AM (GMT -8)
Intrested to learn more from others on their ED recovery after prostate sugery. What are the experiances?

I had my surgery on Nov 29th, 7 weeks since and have some minor incontenence. At this time I am full ED with or without pills but have all my desire and sensations but no ercition at all.

I have read that many people claim they have ercition after 3-4 weeks and or early few months, and just woundering how true it is.

 

54 YO, PSA 5=>4.1=>3.9 and biopsy with 30% of 1/10 sample positive. Had no problem what so ever before and all I had was a yearly Physical leading to deVinchi nerve sparing prostate removal and Now ED.

 

Thanks for reading

profile picture
Tim G
Veteran Member
Joined : Jul 2006
Posts : 3052
Posted 12/23/2007 1:13 PM (GMT -8)

Regarding continence/potency, as one famous prostate cancer surgeon put it to a member here: "It's all in God's hands".  You'll find that a few regain continence and/or erectile function literally right away.  For most these return (often with assistance) over a period of weeks/months/years following surgery, brachytherapy or other treatment.  For some incontinence and erectile dysfunction remain.

I was healthy and had relatively no erectile dysfunction prior to my open prostatectomy. I regained continence in about a month, but ED remains at 18 months.  We have found that penile injections are required.  For me, the adage 'Time and patience, patience and time' is true.

Take care and hang in there...Tim


profile picture
Izzyblizzy
Regular Member
Joined : Oct 2006
Posts : 411
Posted 12/23/2007 4:59 PM (GMT -8)
It is 7-8 months out for us, and although continence returned at about 6-8 weeks, the ED has been slower.

We have done cialis and viagra at beginning, and then the pump, and then the shots.

The shots are working! Although we are not having intercourse every day, Ken still does some cialis and pump treatment on the off days. It is coming back. We are still hopeful one day it will come back with just medication or nothing.

Our first real intercourse was about 7 months after surgery, with help of trimix. It was great, long awaited. But just like incontinence, it seems like all of sudden things start to work again.
profile picture
M. Kat
Veteran Member
Joined : Jul 2006
Posts : 715
Posted 12/24/2007 8:01 AM (GMT -8)
We are 16 months post surgery and you can see from below what the progression has been. Jeff now gets an erection with Viagra and stimulation - it is not as firm as before surgery, but we can have intercourse any way we want! it has been a slow progression and many times we were very impatient. he still has a dribble here and there, usually when we are starting to "play" around. be patient and realize that it is very different for everyone, but there are treatments for just about any degree of ED. take care, kat
profile picture
biker90
Veteran Member
Joined : Nov 2006
Posts : 1465
Posted 12/24/2007 8:53 AM (GMT -8)
I had surgery 12 months ago and was dry the day after the catheter came out. I had ED before cancer and used Levitra.

I had nothing but "flat tires" until about 5 months past surgery. I used L-Arginine and Viagra almost daily and finally started getting some response. I started using Trimix injections at 7 months and found it very successful for good erections and intercourse with no pain. Currently I can get a useable erection without the shots but it is inconsistent. So I still use the shots for sex.

Sex is better now than it was before surgery because we communicate more. We had to when I couldn't get it up. My wife wanted sex so we came up with some new and, for us, innovative ways of doing it. Also the orgasms are more intense and last longer now. A much improved sex life is one of the plusses of having PCa. The other is that I can pee like a sixteen year old again.

My goal is to get to be better than I was before cancer. My doctor told me that due to my age I would not be able to get any better than that. I consider this to ba a challenge and will prove him wrong - again.

Jim
profile picture
norskie
Regular Member
Joined : Jan 2007
Posts : 376
Posted 12/24/2007 9:33 AM (GMT -8)
Well I am 11 1/2 months post surgery and have everything working well. I would say I had my first real erection about 6 to 8 weeks post surgery and was lucky enough to achieve these without the aid of any help they occured on thier own with a little help and today very little problem. As for the incontenence issues those really seemed to clear up more at about 15 weeks post surgery as that is when I put the pads away. Things are as close to normal as before surgery but I do notice when I have a couple of beers or wine when I need to go it's harder to hold on to that as from before.

So in my case the ED issues started to improve greatly at abut 8 weeks post surgery and the incontenence while never really bad cleared up at about 15 weeks.

Hang in there, time is the great healer and it does get better with each day. I remember feeling really well for a couple of weeks and then a day would come back and I had a little more incontenence issues again but these pass with time and healing.

Norskie
profile picture
James C.
Veteran Member
Joined : Aug 2007
Posts : 4464
Posted 12/24/2007 9:59 AM (GMT -8)
I am at 3 months post surgery and have been continent since a couple days past catheter removal.  I am still fully ED.  I started Viagra the night of catheter removal, with 100 mg each 7th day, with atttempts at stimulation and intercourse, to no effect.  At 6 weeks, I began using a pump, and continued the Viagra.  At 3 months, I have had no erections of any kind.  The best I can boast of is a more fuller penis of  the mornings after showering.  No nocturnal erections either.  I have the desire for sex and the ability to orgasm, even if with no erection.  That feat requires much more stimulation than before, but it is attainable.  We have managed to have intercourse one time, using the pump and really small bands.  My problem now is two fold- no erection and no valve action to keep the blood in the penis, maintaining any erection attained with a pump.  I return to my Doc Thursday and will ask to start injections then.  I firmly believe that recovery of nerves and blood flow is attainable with stimulation and work to keep the organ and vessels alive and in their best condition possible.  Some studies say that injection therepy begun early has the most effect on regrowing nerves and attaining function again, above pills or pump, so I am gonna do it for that reason. 

profile picture
kw
Veteran Member
Joined : Nov 2006
Posts : 883
Posted 12/24/2007 10:51 AM (GMT -8)
I had fully usable erections within a few months of RRP surgery using 100mg viagra. Now, 14 months post op have some usable erections without viagra. Incontenace remains! Still using 3-6 full pads a day. If I drink caffeene it is more! Use condoms to help control leaking.
Just hang in there and keep working.

KW
profile picture
puget
Regular Member
Joined : Mar 2007
Posts : 237
Posted 12/24/2007 2:52 PM (GMT -8)
Boy, every story is a little bit different! I'm almost 7 months post-surgery. Started viagra immediately after catheter removed but had no (or verrry little) response for the first three months. Since then, I've seen slow, gradual improvement. Very slow. At this point, I can achieve a marginal erection with 100 mgs. Still no spontaneous erections, although I'm beginning to experience morning "chubbies," which is encouraging. My Dr continues to reassure, but the "patience, patience" thing is beginning to wear thin! I guess we have no choice but to keep trying and waiting.
profile picture
JCL
Regular Member
Joined : Jul 2007
Posts : 242
Posted 12/26/2007 4:58 AM (GMT -8)
I was one of the lucky ones and was out of the pads at five weeks, although I still experienced some small, infrequent stress incontinence that still occurs, but it's so small and infrequent that it's not an issue. Although I was put on Viagra immediately after the catheter was removed, I didn't try any stimulation until the leaking stopped enough to where I wouldn't leak any urine upon climax. That was about at six weeks post op. Seven months post op I can sometimes achieve an erection without Cialis, although I'm not ready to throw out my prescription yet since I still need it.
profile picture
charlieo
New Member
Joined : Dec 2007
Posts : 5
Posted 12/26/2007 5:20 AM (GMT -8)
Hi, I'm new to this site, had HIFU surgery in Canada last June, which I will talk about if anyone wants, have real minor incontinence, not able to achieve erections on my own yet but using tri-mix with tremendous results, feeling like I'm 21 again and I don't mind the needle as the results are astounding. Talk later charlieo

profile picture
IdahoSurvivor
Veteran Member
Joined : Aug 2007
Posts : 1015
Posted 12/26/2007 10:40 AM (GMT -8)

Take heart, samadabad.

 

Achieving No ED at 3-4 weeks is VERY unusual.  My surgeon says that it sometimes will often take 12-24 months for this problem to resolve, depending on the results of the nerve sparing technique and how your body responds. 

 

As you can see, there are many others here with varied experiences and your's will be different as well.  Since it is so early in the game, the best thing to do is to continue to ask questions with your health care professionals and seek what you should be doing for rehab.

 

Has you surgeon or doctor suggested any kind of rehab program with ED pills and/or a Vacuum Erection Device (VED)?

 

You may wish to also consider a taking a vitamin B Complex to aid in nerve rehab.

 

Kind reagards,

 

Barry

profile picture
Nasha
Regular Member
Joined : Dec 2007
Posts : 42
Posted 12/26/2007 3:07 PM (GMT -8)
Just remember that each individual has their own unique healing time line. Try not to compare yourself to others (I realize that's virtually impossible)

 

Prior to surgery ED was never an issue.

It was 11 months post surgery before we had a really usable erection (with Viagra). The 11th month was such a turning point. 

 

 Prior to that, my husband used the pump for a while, and tried the injections. The injections were awful--very painful, and thus unsuccessful. We did everything to stimulate the blood flow.

Just remember that if you take Viagra,  be sure you have an empty stomach---that made all the difference.

 

Again, everyone is different, be patient, try to relax as much as possible and good luck!

 

Nasha

profile picture
tomagolfing
New Member
Joined : May 2007
Posts : 5
Posted 12/27/2007 9:26 AM (GMT -8)
 I agree with Nasha. Doing injections ( trimix ) for 7months but very painful. Recently had priapism and had to go to ER. My doctor stated the priapism was a positive sign and that the nerves are beginning to heal. I am now going to try Viagra and or Cialis and hope to  have positve results without the pain.
profile picture
geon
Regular Member
Joined : Oct 2007
Posts : 103
Posted 12/29/2007 8:46 AM (GMT -8)

I am now ten months without any natural erections.  I feel tingling and some slight movement and hope an erection will develop from the feeling but nothing has happened.  I guess it is my hormones kicking in once in a while.  I have developed however some strength in penis head feeling good from kegels, but no normal erections.  I will continue to wait this out, continue with the pump for exercise and trimix.

Has any any knowledge if oral stimulation helps in developing natural erections?  We have not tried this method as it does not sem right for some reason.  Anyone have experience with oral?

Thanks and a healthy New Year.

profile picture
Nasha
Regular Member
Joined : Dec 2007
Posts : 42
Posted 12/29/2007 9:38 AM (GMT -8)

Any mutually agreeable activity to bring blood flow to the penis is a good thing! Oral stimulation can certainly help, but sometimes it doesn't---it just depends. My husband has found that getting erections are now much more of a "mental" feat than prior to surgery (DaVinci, nerve sparing, clear margins Sept. 06).

Things continue to improve..he can take just a half or a third of a Viagra with wonderful results.

Also, be careful of trimix--that can lead to a "bend" in the penis which is irreversible.

profile picture
geon
Regular Member
Joined : Oct 2007
Posts : 103
Posted 12/29/2007 10:27 AM (GMT -8)

Nasha,

Thank you for your reply.  I will take your advice and see how it presents itself on such a delicate issue.  I suppose that anything in reason is worth a try.  A new experience I suppose.

Has your husband run into a situation with a bent penis?  I have been using trimix every third day sometimes for use and some time for simple blood flow.  In your experience, is this excessive?  Are there any preliminary signs?

I believe your husband in the mental issue.  Audio, visual stimulation that was a real turn on in the past is not effective any longer.  Mental and manual stimulation appears to be effective now.

Thanks again for your openess,

Geon

profile picture
kw
Veteran Member
Joined : Nov 2006
Posts : 883
Posted 12/29/2007 10:48 AM (GMT -8)
I have a slight bend to the left now. There also seems to be somewhat of a flat spot on the underside of the shaft about half way up! That is where the bend is. Not sure what caused it. Could have been the 28 cathiter days? I did loose my left side nerves! Who knows! At least it is working. Sometimes without Viagra! I will make sure to try next time on an empty stomach. Swim told me to stay away from fatty foods and wait atleast two hours.

Good Luck All,

KW
profile picture
StrictlyInc
Regular Member
Joined : Dec 2006
Posts : 359
Posted 12/29/2007 10:55 AM (GMT -8)
My signature has details, but basically I am 17 months past surgery. Recovering from Peyronie's (bent penis in non-technical terms). Peyronie's has reversed, largely. Erections are "weak and wimpy" with PDE5 inhibitors, and just OK with VED. Using Bimix I do get quite good erections, but I waiting for one more follow-up with the urologist treating me for Peyronie's before I use them frequently (and the frequency is a question for me).

Wondering if I will ever get to the point of having suitable erections without VED or injections... but keep pressing on.
profile picture
charlieo
New Member
Joined : Dec 2007
Posts : 5
Posted 12/29/2007 12:35 PM (GMT -8)
Hi everyone, been following the thread and thought I'd add my expeiences. All the pills did for me was give terrible heartburn, the VED seemed ridiculous and humiliating. After my 3 month psa my uro gave me trimix, am batting 1.000 with it. At first I didn't even feel the needle as my nerves were quite probably damaged. Now, I feel it though not extremely painful, it's been almost 3 months. I am developing tracks like a drug user might develop, but not too many people see it. Had a psa of 7.8, gleason of 3+3=6 and T1c stage and HIFU on 6/28/07 cath. removed 7/12/07. I fond oral stimulation to be very soothing during the healing process and would have soft and dry orgasms. My uro's opinion is "Lose it or lose it!" and was very cooperative about prescribing the trimix. The number of pads a day thing is subjective I believe... What was your level of activity? Fluid intake? Comfort level? I change mine alot because I like to. There is a new member in my support group that ran a marathon 2 1/2 weeks after laproscopy and was saying how his socks were wet, my thoughts were "Do you ever expect to heal like that?" Face it our bodies went through shock with whatever procedure we chose and there are  now things we used to take for granted that now take a lot of thought, less as we heal. Happy New Year  charlieo

profile picture
AndrewJ
Regular Member
Joined : Jul 2007
Posts : 25
Posted 12/30/2007 8:10 AM (GMT -8)
I am very conscious of not "boasting", but think it is important to relate my good experience to show that it is possible. In the darkest days between diagnosis and surgery I was introduced to someone who had very good outcomes with continence and ED after surgery and this gave me some hope that what I was about to go through may not be as bad as I feared. Maybe my story can also give others some hope.

My surgeon was very motivated to address ED issues (one reason why I chose him) and started me on a daily mini dose of Levitra the evening before surgery and this continued for the weeks after surgery. I will never know if this had anything to do with it, but I awoke with a "half" erection during the night after the catheter was removed and full erections not long afterwards. I stopped daily "rehabilitative" 5mg doses of Levitra after a month or so. Even though everything is pretty much like it was pre-op, I still use 5mg Levitra "as required" as a safety net and am only now thinking of winding this back.

I know I have been very fortunate and this stops me getting down about the whole experience of PCa. Everyone has their own individual story here and I wish all the very best to guys struggling with this issue. I do suspect that there are more good stories than it seems from this forum - perhaps the people without issues tend to move on and not post. I would simply like to provide some hope to others facing surgery and worried that it will definately mean a lower quality of life.
profile picture
Nasha
Regular Member
Joined : Dec 2007
Posts : 42
Posted 12/30/2007 10:52 AM (GMT -8)
Geon,
My husband used trimix approximately 5 times. The erections just were not "right" and as I previously said, they were very painful for him, thus unusable. We detected a slight curve which gradually diminished over time.
We're finding Levitra to be very effective---some spontanaity has returned since it can be taken shortly after eating. (unlike Viagra).
profile picture
StrictlyInc
Regular Member
Joined : Dec 2006
Posts : 359
Posted 12/30/2007 2:27 PM (GMT -8)
For those having pain with Trimix, you may want to try Bimix, which does not contain prostaglandin. That ingredient caused me pain.
profile picture
charlieo
New Member
Joined : Dec 2007
Posts : 5
Posted 1/2/2008 7:39 AM (GMT -8)
 Has anyone done traveling with trimix? My partner and I are going to Central Amer. in Mar. and was wondering about how to care for it, refigeration that is while traveling, airplanes etc. Does anyone know the shelf life of it unrefrigerated? A few cool paks in check on baggage should suffice I assume any help?   charlieo
profile picture
Pete42
Regular Member
Joined : Mar 2007
Posts : 114
Posted 1/2/2008 6:11 PM (GMT -8)
I have traveled with the trimix, with a few cold packs in a ziplock then refrigerate on arrival. No problems.

✚ New Topic ✚ Reply
12


More On Prostate Cancer

Positive For Prostate Cancer

Positive For Prostate Cancer

An Unexpected Diagnosis Of Prostate Cancer

An Unexpected Diagnosis Of Prostate Cancer


HealingWell

About Us  |   Advertise  |   Subscribe  |   Privacy & Disclaimer
Connect With Us
Facebook Twitter Instagram Pinterest LinkedIn
© 1997-2023 HealingWell.com LLC All Rights Reserved. Our website is for informational purposes only. HealingWell.com LLC does not provide medical advice, diagnosis, or treatment.