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Surgery tomorrow

MK1965
Posts: 164
Joined: Jun 2016

Hi all, 

my surgery for radical prostatectomy robotic assisted is scheduled for November 2nd at 7:30am CDT.

it is about 9 hours until surgery commenc. I am doing my bowel prep now and will take few hours of sleep.

i feel very anxious about surgery and recovery but I am positive I have chosen right treatment for my prostate Ca.

Diagnosed ni August with Gleason 7 (4+3) 1 core positive out of 12. Had TURP surgery on June 1st when incidentally diagnosed with prostate Ca Gleason 6.

Read a lot about other patie experience and post op recover. 

Preared for the worst but hope for the best.

Will see how it will go after I wake up from anesthesi.

MK

Bill91101
Posts: 60
Joined: Apr 2009

MK,

Hope all goes well!  I'll think positive thoughts for you.

Stay strong,

Bill

hopeful and opt...
Posts: 2218
Joined: Apr 2009

Best wishes for a speedy recovery and the best for you.

h

VascodaGama's picture
VascodaGama
Posts: 2966
Joined: Nov 2010

Hope the procedure is eventless and that you mange to get rid of the bandit.

Best,

VG

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3250
Joined: May 2012

Bless your proceedure.  May the pathology report be all good news.

You studied and researched a lot and made the right decision for you -- a process that is never easy or clear-cut.

max

DaVinci, Dec 2014

Swingshiftworker
Posts: 1013
Joined: Mar 2010

Good luck!

mrdcb
Posts: 2
Joined: Nov 2016

I'm sure all will go well. I am considering same surgery. Keep the board current on your recovery. Have a Gleason score 7, 3+4 with cancer present in 8 of 12 cores. Doctor says I'm a good candidate for surgery or radiation. Still unsure as to what will give me the best quality of life after treatment and recovery. Radiologist tells me radiation is likely in the future after surgery. I need to discuss this with the surgeon as surgery is not recommended after radiation treatments. 

Hoping you have a swift recovery.

hopeful and opt...
Posts: 2218
Joined: Apr 2009

If you wish, you can start a new thread, in order to receive inputs for your situation, that you may find useful. Doing this will avoid infrigment to the current thread.

Best to you

Clevelandguy
Posts: 425
Joined: Jun 2015

Hi,

 

Good luck with the robotic surgery, had mine about 2 years ago.  The catheter is the worst part about the recovery that I found.  Do your Keigals when the doctor give you the green light, they did help me.

Dave

3+4

Will Doran
Posts: 207
Joined: Sep 2015

MK1965,

Good Luck with your recovery.  Stay as active as your doctors will allow.  Your physical condition is very important in your recovery. 

I had robotic surgery three years ago, and my PSA went from 69 (with a Gleason of 7--3+4), when diagnosed, down to <0.010 in 4 or so months months.  My PSA has remained at undetectable levels for three years.  I had 8 weeks of Radiation and was on Lupron for two full years, as follow up treatment.  This is a hard fight, but don't get discouraged.  Do as your doctors tell you and fight like "H".  I went to Physical Therapy after a period of time, for bladder control.  I still do those exercises (kegels) as I was instructed.  All of that has helped. 

Best of Luck for a speedy recovery and healthy future.

Love, Peace and God Bless

Will 

MK1965
Posts: 164
Joined: Jun 2016

Want to thank everyone for best wishes and encouragemends.

Had my surgery on November 2nd. Went to OR as planned at 07:30 and was in recovery room around 12:45. Surgery took longer than planned. Once awaken was visited by my wife and daughte. Surgeon told my wife that everything went well but took more time to complete because of TURP which I had on June 1st.

stayed in recovery room until 5:15p when I was taken to my room. Fist post op night was okay with a lots of pain meds. 

Thursday, November 3rd, my POD#1 was painful but tolerable with scheduled pain meds. I was on continuous I V fluid, try to eat something but I lost my appetite and taste. I walk in the hallways 3x that day pushing IV pump in front of me and having my catheter bag attached to the base of IV pump. My belly was very painful and distended an my JP was having good output thruout  day. Was not able to pass the gas.

Next day, November 4th, POD#2  was rough and more painful with pain harder to control. Was having bad belly pain and distinction to the point that I could barely breath while sitting and standing or walking. Position with least of pain was supine in bed. Used religiously incentive spirometer to improve my lungs function but w/o much success. Continued to walk around nursing station. Eat very little without any appetite and feeling of any taste.

Was able to pass the gas in the afternoon and was discharged home around 5:30p. Asked for pain med just before leaving hospital for smoother ride home.

Saturday and Sunday November 5&6 while at home, I had very bad abdominal pains, cramps and stabbing pains all weekend long when ch very hard to control with Norco. I tried to skip half of the times taking it only twic instead  4x. It was terribly painful to move around change position, sitting in chair Pain was all the time around 8 or 9.

Had my first BM on Saturday and was hoping that will improve my pain but it did not happened. While having stabbing sensations on my right side of abdomen, I was screemin in pain.

Sunday was not any better and I told to my wife Sunday evening I regretted having surgery. I suffered more pain after surgery than in whole my life. I had multiple surgical procedures before prostatectomy but last one was far the worst. Never expected to suffer so much pain because robotic prostatectomy was described as least invasive procedure. I do not think open would be any worst?

I had option to go with radiation and I am positive suffering would not be anything like robotic surgery.

Catheter is not problem for me because I dont feeling that catheter is present at all. This might mean that my genital  area is dead. When I had TURP in June and catheter in for 9 days, that bothered me a lot on that time.

Today, November 7th, POD#5, I felt I little less pain but still lots of pain in my right side of abdomen. Called my urologist nurse and only advice was to use max prescribed pain meds.

Got appointment for catheter removal on Thursday November 10.

To summarize my experience in one sentence: Very rough and extremely painful post op time.

Would never go with surgery for the same problem, PCa.

If 2 treatment choices are giving same results, would be wise to choose lesser evil from two.

Maybe this is just me.

MK

 

 

hopeful and opt...
Posts: 2218
Joined: Apr 2009

I hope that there will be smooth sailing from now on for you.............Best

Old Salt
Posts: 720
Joined: Aug 2014

Thanks for the detailed report. Sorry to read about the nasty aftermath of the surgery. It appears that you were hit especially hard!

Hopefully, the next few days will get (much) better.

PS: How experienced was your surgeon?

MK1965
Posts: 164
Joined: Jun 2016

When asked my surgeon about numbers he said he performed 300 robotic surgeries including those as a resident. I could not find more experienced surgeon in the group of urologist covered by my insurance.

I took what was available because I wanted robotic surgery WHICH apparently was HUGE MISTAKE THAT PUT ME THRU VERY PAINFUL EXPERIENCE.

Would never again choose robotic surgery.

MK

VascodaGama's picture
VascodaGama
Posts: 2966
Joined: Nov 2010

I have not heard from RRP guys such experience of lasting pain in the days following surgery. It could be due to an infection. The liquid accumulated in the inner cavity must be drained totally and that could be causing pain if blocked. I wonder if they took off the draining tubes too earlier. I read of some guys having pain due to the clamps left behind. Did the nurse inform the doctor when you called to report the pain, or did she just tell you the obvious "take pain killers" (disregarding any critical issue)?
I had open surgery and never experienced pain. Not even a fraction. IV pain killers were drawn on my second day. Walking was good to force the intestines action and expel gazes (which may be a source for pain too).

I hope the problem has improved by now and that the PSA readings make you smile and provide you with a deserved peace of mind.

Best wishes for complete recovery in the "continence and sexual" departments.

VG

MK1965
Posts: 164
Joined: Jun 2016

Before surgery I looked and read huge number of other people experience with and after robotic assisted radical prostatectomy just to get a clue about what to expect. Most of patients I would say 90+% were pleased with robotic surgery and VERY to fairly easy recovery. I do not know what happened to me but my post op days were rough and extremely painful.

Today, I am scheduled for catheter removal and will see what my continence level will be?

MK

 

Clevelandguy
Posts: 425
Joined: Jun 2015

Hi,

Sorry to hear about your first few days after Robotic surgery, sounds like you are getting better.  I had robotic surgery a couple if years ago with a very small amount of pain(did not even use the prescribed pain meds). To VG's comment about the drain tube, they took mine out right before I went home the next day after surgery which surprised me.  Felt very wierd & kinda painfull when the pulled it out.   I would think that the catheter should bother you, I know my did.  I know it will take time to heal from surgery but be sure and tell your doctor to investigate the right side pain.  Good luck and keep us informed.

 

Dave 

3+4

MK1965
Posts: 164
Joined: Jun 2016

Thanks to all who replied. 

My JP drain was pulled out on 2nd post op day at 3:30 pm so it was draining for about 52 hrs continosly. Second day was not draining as much as it was after surgery and 1st post op day. Pulling JP drain was not overly painful but because of vacuum after drain as being pulled, I had a feeling my intestines are being pulled out.

Woke up an hour ago (Tuesday morning, Election Day) and sitting in my recliner while drink my esspresso coffee.

Still have a pain in my right abdominal side with some type of cramping pain or pulling pain that goes in all 360* degreess. Was not satisfied with nurse call to increase Norco intake up to max prescribed.

I can't believe that according to my surgeon "the least invasive surgery is robotic assisted" still put me thru a lot of painful experiences that I do see end for my pain. At post op day #6 I do not feel much better if at all.

Just to say, I am in excellent physical shape. I am running regularly with my Labrador , going to gym, and very much involved with soccer officiating lots of youths soccer games. I am 6'2" and weighing 210 lbs.

I even increased excercise before surgery to be better prepared and to easy my recovery.

Symply said: Totaly disappointed with robotic surgery.

MK

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3250
Joined: May 2012

MK,

My post-DaVinci experience was quite different from yours. Pain not too bad the day after the proceedure, and not taking anything but Advil within three days.

The numbness you describe will pass/clear up; I did experience that as well. It may take a month or so to regain feeling in the pelvic region, but all has returned to normal for me, even full sexual ability, without drugs.  But I was DEAD down there for several months, so do not lose hope.

It sounds like your experience is on the fringe of what is ordinarily reported here post-DaVinci, but someone has to have worse-than-usual experiences, and i am sorry that it is you.

Interested in your pathology report.

max

Clevelandguy
Posts: 425
Joined: Jun 2015

Hi MK,

If you do not feel any better six days after surgery then you might need to go back to the doctor to get checked out.  I know I improved every day just a little but there was marked progress.  Be aggressive with your doctor and make sure your concerns are answered, remember the squeaky wheel gets the grease.  I noticed in another post that you had six cuts for a total of around 24 cm's.  I had five cuts that added up to around 12cm's total.  Hope your feeling better.

Dave

3+4

MK1965
Posts: 164
Joined: Jun 2016

My catheter was removed on November 10th. Ever since catheter removal I have constant urinary incontinece. Leaking constantly and soaking pad after pad and pull ups. Today, a week after catheter remova, I do not see any change. I am going thru 7-8 pads and 2 pull ups. The least leakage I have when lying flat in bed. I started Kegels after catheter was removed and I was doing them for a month prior to surgery.

I hate being wet down ther. It is awkward feelin. I am blessed to be working from home othherw I feel comfortable sharing office with someone. I am not going out of house because I feel everybody knows and see me wearing pads and pull ups. This is very hard emotionall toll on me. 

My wife is very supportive and encouraging person and is always on my side.

This situation is very stressful. I wish I never had surgery. That was big mistake on my side.

VascodaGama's picture
VascodaGama
Posts: 2966
Joined: Nov 2010

I like to read your updates that will help the many envisioning RP. I am sorry though that unfortunately you are one of those suffering from the intervention. Pain and now incontinence and probable future ED, are the high risks of PCa surgery. However, all those symptoms/conditions may improve in time. You need to be proactive to get to normalcy the soonest. You doing already kegels but are those exercising the proper muscles as strong as it should be? I heard about pulse equipment that manage to tackle these muscles. I also heard guys here commenting long periods of incontinence that gained improvement two/three months after OP. In regards to ED I always suggest guys to do any thing that can force the blood supply to the penis carvenous for oxiginating the area (to avoid dead o local tissues). One should be proactive with masturbation, viagra, sex. etc, and pulling the penis constantly to avoid burring.

Best wishes for improvements.

VG

Clevelandguy
Posts: 425
Joined: Jun 2015

Hi,

Sorry for all your leakage issues.  A couple of things you might want to look into is a surgically inserted sling that should greatly reduce your leakage.  Also there are penal clamps you can buy on Amazon that clamp onto the shaft of your penis to stop the urine flow.  Short term also there are external catheters that fit like a condom with a bag you strap to your leg. I worn heavy pads for around two years and I don't think anyone noticed I was wearing one.  Just makes it kind of ackward when you go the the wall unrinal and try to pee normally, you can use the stalls. What ever problems you run into there are some type of work arounds.   Just some ideas................

Dave

3+4

shipjim's picture
shipjim
Posts: 137
Joined: Apr 2006

Sorry to hear of your problems.  I had this done in 2006 via the robot.  I had no particular side affects from the surgery.  Naturally it is sore where the inserted the robotics and pulled the glands out thru my belly button.  The doctor mentioned that it was made more difficult because of the TURP,  perhaps you shoulld find out if that is part of your problem.   In addition to the external pads etc, I recall there is a valve in the bladder that sometimes can be part of this problem.  

I agree, be aggressive with your doctor.  What you're experiencing is far beyond what is the norm for the robotic.

Good Luck.

MK1965
Posts: 164
Joined: Jun 2016

Very bothersome incontinece at 5 weeks post catheter removal and I did not make much progress if at all. Still wetting pads and pull ups especially when standing and walking. While walking, I can not keep any urine in my bladder. Everything goes into pad and pull ups. I am doing Kegels as I was instructed but I am not making any progres. I am wondering when I should start seeing some progress with incontinec. Some guys were already dry by 3, 4 or 5 weeks after cath was remove.

I am still completely numb in my penis and perineal area. No feelings at all. I am not on any meds for ED and my urologist does not have any plans for that proble. I will be seeing him on December 22 for my first post op PSA.

Should I ask for something at 7 weeks post op or still is to early to sta penile rehab?

MK

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3250
Joined: May 2012

MK,

I would say your progress in some ways is toward the slower end of the spectrum for men post-RP, but not a diaster or necessarily indicative of permanent, terrible problems.

My pelvic area was wholly and totally numb for at least two months, and feeling returned gradually, not rapidly. But I think it was numb longer than two months, I just cannot recall.

I also cannot recall when I first tested for sex in the urologist's office, but it was probably around three months.  I began a compounded drug known as TRIMIX.  Trimix is a mixture of three vascular dialators, given via a tiny needle, either self-administered or your wife can do it.  I was told the needle is about the size of the ones used by diabetics into their stomachs, but I am unfamiliar.  The needle insertion was not painful for me.  It was first administered as a test and for training by the RN.  Despite a totally numb groin area and totally numb penis, I had an erection within 10 minutes, and it lasted about 3.5 hours, or almost up to the traditioanl "4 Hour Warning" period.  The doctor had me get Benadryl on the way home in case the erection did last too long, and I began taking those at about the three hour point.  Via self-injection it never failed to work, and we were having decent -- not great-- sex two days later (Trimix cannot be administered in two consecutive days; you must take a break of at least 48 hours).

You will be trained on needle placement. It is easy to "miss" and insert into the urethrea instead, but this is not a problem or dangerous in any way. You will just urinate the med out, but will have to wait till the next day to reinsert the needle.  I did miss once, and the RN told me it was no issue at all.

TRIMIX is about 80% effective, even in men who have total E..D.  It is many, many times more powerful than Viagra or Cialias.  Trimix will give a good erection in men who get no response from Viagra, but Trimix is not 100% effective, just close to it.  It is not available at most big box drug stores.  You must buy it at a compounding pharmacy -- one with a pharmacist who grinds and mixes stuff the old way.  This is mostly because the drug must be refrigirated, and has a shelf life of only about 30 days I believe.

I later transitioned to Cialias for many months, but today, two years post-surgery, do not even require Cialias for good, spontaneous response.

Ask your doc if it is too soon for Trimix or not if you are interested.  I recall it not being too expensive, and way cheaper than Cialias.

You did not meniton pain this time, so I hope that the pain is over now.  As to the urinary issues, they usually better, but that can be slow also. I wish you progress on all fronts,

max

Info on Trimix. I am not recommending this pharmacy, just using it for information.  Any town of any size will have a local pharmacy who can compound this for you after you get trained and a perscription

http://zionpharmacy.com/trimix-injection-solution/

 

.

 

VascodaGama's picture
VascodaGama
Posts: 2966
Joined: Nov 2010

MK

Survivors above provide good advices. Your lost of feelings (penis and perineal area) is common in radical prostatectomies when surgeons dissect too many nerves impairing the local network. Robot surgeries are more prone to such occurrences as it is difficult with the robot arm to try sparing some without affecting the others. Take the opportunity of this visit to discuss in detail all issues/symptoms, in particular in regards to means for suppressing them. You can ask your doctor to introduce you a specialist on the matter that could follow up while you recover. 
There was a sexologist in my RP team of physicians (I did not know why at beginning) who latter taught me how to counter the effects. He told me about an injection (for self administering) which supposedly sensitizes the local nerves to react. I was told that our body manages to send down the signals for local functions via a separate set of (existing) nerves that will replace the ones missing. I was never incontinent but ED became an issue which I believe to have solved for my constant actions over the matter and strong mental willpower, back in 2000. I now experience Climacturia (leakage of urine during orgasm) which could mean that my body uses the same set of nerves in charge of controlling the sphincter muscles (urine valve) for ED improvement .

Strong willpower exercises may help in building a newer nerves network for accessing the penis and perineum area. Do not wait for things to happen or recover naturally. I would try everything now even if success seems to be low.

http://www.pcicollege.co.uk/page/art/419/0

http://www.forbes.com/sites/groupthink/2013/12/03/5-powerful-exercises-to-increase-your-mental-strength/#a65ee28550e0

Best wishes for a good Christmas free of leakage.

VG

 

MK1965
Posts: 164
Joined: Jun 2016

I am now 9+ weeks post op and I still do not have any feeling in my penis and perineum. My wife and I are trying manual stimulating but I do not feel her hand on my penis at all. About week and a half ago, I started taking 5 mg Cialis daily but nothing happens so far in that area. I still have complete flat tire with zero response to manual stimulations. Was not able to have orgasm so far. I know it is possible to have an orgasam with flaccid penis but it is almost impossible to stimulate penis when it is totaly soft.

On my visit with my urologist surgoon on December 22, I told him about complete lack of feeling in penis and perineum area after RP, he was not concearned at all and just nonchalantly said "No worry, it will come" 

i saw few others mentioned about this problem but wondering when I should start feeling when penis being touched and stimulate? Really wondering if this sound normal and familiar to others after RP?

Sterted worrying about this lack of feelin and suspect he messed up some other nerves responsible for sensation in the area. 

As for incontinece, it improved somewhat but still need one par of pull ups daily. Leaking around 50 ml daily. Catheter removed on November 10th. Hope to keep improvin.

 

MK

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3250
Joined: May 2012

Mike,

I know that I am being somewhat redundant here, but you asked for feedback regarding your still-numb pelvic area/penis.  Also, I write every response to every question as what the English philosopher John Locke called a Tabula rasa : a blank slate.  That is, a new beginning point. These Boards are so poorlly organized that it is impossible to know, and unreasonable to assume, that any reader has ever read anything that a given respondent contributes (unless perhaps the responses were in the same thread, but even then, these become so unwieldy that it cannot be assumed that what was written a few months before has been read by new arrivals).   For guys who have read every post that I ever wrote over these years at PCa, my apologies, for it must seem very old-hat: predictable. (This is even much more so at Lymphoma, where most of my posts have been written.) 

The same is true for me as a reader:  When this-or-that guys begins to explicate this-or-that, I know pretty well exactly what they are going to dissertate on, and will usually not read the post.   But bless all for their contributions.  It is priceless and insightful with each iteration.

My pelvic region was numb/sensationless at least as long as your's has now been. I initially used injection Trimix, not Cialias. Trimix worked well for erections, even when the penis remained numb.  I learned that three functions are essentially independent processes in men's sexual performance, although young guys who have never had imparement or never studied the issue would not know:   Erection, orgasam, and ejaculation.  Ejaculation post-RP of course is history, but men with normal prostates sometimes experience these "dry orgasams."  Male orgasam is independent of erection (as you noted), as is often (but not always) the case with "nocturnal eruption."  Erection is the main issue at present for you.  The brain ties these three processes together in a "normal" sexual episode, bu they are separable.

Three years post-DaVinci, I have normal funtion, with no Cialias.  This has been the case for at least a year, but I was having good sex long before with Cialias. It is reasonable to believe that you will get there.

Thirty years ago, I was run over by a car, crushed, and in an ICU for 25 days before beginning two years of rehab, learning to stand, walk, and speak again (Profound oxygen depravation [I was dark-purple in the E.R.] gave me organic brain injury, which made saying more than a word or two difficult for a long time, and I had no short-term memory at all.  The lead respriatory therapist at that hospital told me later, months after I was discharged, that my arterial blood gasses "did not indicate life" (in other words, levels they would expect on someone actively dying, about to pass).  But I later fought back and managed to take degrees and learn a foreign language with with highest honors.)  

Because my femur was broken at the hip socket, and again at mid-thigh, I had surgery on the side of the hip to insert a rod and wire together the hip itself. The incision is one foot long.  This caused profound pelvic numbness for at least a year.  The only doctor I was seeing after my seven weeks in the hospital was the orthopedic surgeon, and he gave me the exact same reply that you received: "It will return."   What was most discomforting was that he had no idea what was causing the numbness.  My UT was not operated on at all, bit tp mobilize my left leg, I was on a  PMD "passive motion device."  One of the positioning devices for the PMMD was crammed in to my groin for weeks, and I believe this was a factor, but will never be able to confim.

After my DaVinci, I related this experience following the wreck to my urological surgeon, and asked him what the problem likely had been decades before. He replied that he had no idea either, but most likely it was the morphine that I was on for 24 days during the ICU time.  

I was totally impotent and numb from the wreck, as I said, for about a year then (much longer than following the RPt).   And I had no form of support, no drugs. The current ED drugs were not invented until years later.  But things returned to normal.

I would not distress over this situation at your amount of time thus far post-op. I recall that you had much worse than normal post-op pain, which thankfully seems to have passed. This will pass as well... I know it is worrisome and a cause for reasonable anger.    I had clinical depression from middle school, annd back then, most psychiatrists did not consider clinical deppression possible for someone my age.   But in the late 80's I devised a joke about myself: 

"I was depressed, then I got run over by a car."  Perhaps a person would have to like Rodney Dangerfield to get it....   Later I changed it to, "I was depressed, then I got advanced lymphoma."  Then I changed it to, "I was depressed, then I got a secondary cancer."  Today, I am just finishing following a tumor in the right lung, although it is extremely likely benign....my cancers have not been associated diseases, no form of metastasis.

Each was a Tabula rase : A new beginning.

When life dumps on you, you just have to get a shovel and go back to work.  Watch a YouTube of the Pretender's hit song Chain Gang: It depicts the life of humanity.   But with the right values, a man can be happy in any circumstances.  When in the submarine force, we used to "go North," above Siberia.  Of course, I will never be ablt to say when, or exactly where, or why.  But in Scotland one day, just before "going north," I bought a copy of Aleksandar Solzhenitsyn's classic depiction of the Soviet Gulag.  I read it while on that deployment. Despite torture and most men freezind to death, Solzheniitsyn noted tham many of his friends there were never broken, never lost hope.  Utterly amazing, seemingly impossible.

I never felt happier in my life than when on chemo, watching the bags drip all day long, or decades earlier, when the ICU RN would bring my liquid food for the day in in a green bag, and hanging it on the IV tree.  She always cheerfully said, "Here's dinner !"  I knew these things represented what could be, rather than what was in the moment,

max

Swingshiftworker
Posts: 1013
Joined: Mar 2010

I'm sorry to hear about your continuing difficulties following sugery.

I'm sure that the others who have said "not to worry" -- feeling  and function "eventually" will be restored -- are well meaning but, if I were in your shoes, I'd feel exactly the same, especially if I was younger and use to having normal sexual relations w/my wife or SO.

I'd be pissed and dismayed at not being able to "do it" after the treatment and you have every right to feel that way, especially if you were assured by your surgeon that having sex after surgery would NOT be a problem.  So, I think your anger is appropriate as long as it is expressed properly.  You just need to direct it in a way what is not harmful to yourself or others.

On the other hand, what can you do about it now?  Unfortunately, not much.  For the time being, you will just have to grin and bear it.  Frankly, I would suggest that you stop trying to have sex w/your wife, because just trying to "do it" will cause you emotional stress if you can't and the mind can have a lot to do w/the problem.   Let it go for awhile.  Just enjoy your wife's company.  Kiss, cuddle, snuggle, hold hands or whatever but don't have "sex" in mind.

Personally, I'd say 9 weeks is long enough to start worrying about it but I've read that it can take as long as a year OR MORE for sexual feeling and function to return after prostate surgery.  So, you have a ways to go yet to consider taking other action.  One thing I would do in the meantime is question your surgeon, if you haven't already, about whether he may have cut any of the erectile nerves during the surgery.  Ask for a copy of his surgical notes -- not just the surgical report.  He'll probably say he didn't touch the erectile nerves (unless that was the plan to begin with) but, if those nerves were cut, you'll NEVER be able to get an erection again, no matter what you do.  So, you need to know if that happened or not.

If that happen or if you do not get sexual function back after a year, I'd consider asking for a penile implant.   At that point, that would be the only way you'd ever have an erection again.   However, this choice is imperfect at best.  There can be medical/mechanical problems w/the implant and, even if it functions properly, you'll still never have any feeling in your penis and you not be able to orgasm.  The only thing you'll be able to do is "simulate" the sex act w/your wife.  That could be as frustrating to you as not being able to do it at all.

FYI, I'm 66 and have occasionally had problems w/ED (unrelated to my PCa treatment).  On those occasions, for some reason, I just couldn't do it and, when I let it go and stopped trying to do it, the ability eventually returned.  That's the psychological part that I was talking about. 

Also functionally, with my advancing age, I am finding it more difficult to orgasm.  This is not often discussed problem related to aging.

I say orgasm because w/the killing of my prostate by radiation, the ability to ejaculate semen is lost (as it is w/surgery) but I can still orgasm and ejaculate a small bit of fluid.  However, there are times when I just can't "come."   This has always been an essential part of the sexual experience for me (and I believe for most if not all men as well) and NOT being able to orgasm just makes the whole thing unsatisfying to me.   When that happems, I have to resort to masturbation and my SO is very helpful in trying to assist me to orgasm in that way after I have failed to do so while still inside her.

I relate this personal experience because I think it could be important to your decision, if necessary, to get a penile implant, because just doing the old "in and out" may ultimately be unsatisfying and not worth the trouble, if you have no "feeling" in your penis and cannot orgasm while doing it.  That's a personal choice what you may have to make and should be aware of before you decide to get a penile implant, if it ever comes to that.

Good luck!

hopeful and opt...
Posts: 2218
Joined: Apr 2009

PDE-5 (phosphodiesterase) inhibitors such as cialis is appropropriate....Although I am unable to find thr study now, I remember having read a study where 10mg daily cialis is recommended for recovery.....you may wish to researchand confirm this....

It is important for you, or you and your wife to manipulate, and also use a vacuum pump......do this very frequently,, for sexual performance and pemile length rehabilitation..... not doing anything can cause permanent ED.

After a time you may wish to consult with a doctor who speciaizes in sexual function....there are various strategies that can be done to include injection to penis, penile implant, etc.

Please be aware that recovery of sexual function, is age dependent at time of surgery, so a younger man has a better chance of recovery than an older man.

 

http://www.harvardprostateknowledge.org/new-options-for-treating-erectile-dysfunction

Clevelandguy
Posts: 425
Joined: Jun 2015

Hi MK,

Was looking around the internet and found that some men that had hip surgery also have numbness in the groin area + penis.  Looks like it will take a few months for the feeling to come back. According to some doctors nerves take several months to heal.  I did not have this problem after my RP surgery but it does not sound like a fun thing to go through.  Your leakage hopefully also will improve, I had improvement in my second year after post surgery.  Went from diaper & pad, to heavy pad, to light pad.  Hang in there MK there is more recovery to come.

You might want to read this story, informative with little humor thrown in: http://www.yananow.org/display_story.php?id=385#III

Dave 3+4

MK1965
Posts: 164
Joined: Jun 2016

i want to post info on my progress. 

I am 3.5 months post op and 99% continent. Still have some stress incontinece with sudden movents, lifting, bending, coughing and  sometimes totally unprovokeD. Still wearing 1 pad per day when out of house for my own security.

In ED department not even slightest progres. I see, returning of erections after RP is equal to man declared with brain death. Both are artificially kept alive and might come back only by miracle.

Taking Cialis since beginning of January but so far no happenings. Did not have my first post op orgasm yet.

Surgery ruined my whole life. I do not have a words to exprests my feeling and describe my disappointment.

MK

VascodaGama's picture
VascodaGama
Posts: 2966
Joined: Nov 2010

MK,

I am sorry for the symptoms. I hope that ED also resolves and that your treatment gets you out of the troubles.

What is your PSA at this time?

Best

VG

Old Salt
Posts: 720
Joined: Aug 2014

I am sorry that your recovery is taking longer than average. I have read that it may take as long as a year to fully recover from prostate surgery. But the important question is whether the operation itself removed all of the tumor(s). As Vasco just wrote, the PSA test result should tell. I hope that that result will give you something positive to smile about.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3250
Joined: May 2012

Mk,

Like Old Salt, I hope you come to see the sunshine above the clouds.  I suspect you will never be happy about surgery.  But you initially had severe post-surgical pain (quite uncommon) which went away.  Your urinary control for this time period is excellent.

As I wrote at some point above, following a crush injury decades ago, my entire pelvic region was totally numb for over a year. But full potency and sensation returned later, with no treatment. Actually, no one even knows what caused it.

There is high liklihood potency will return to you over time.  With a full cure of the disease, I hope these trends eventually will allow some fulfilment and contentment to reenter your life.

max

Clevelandguy
Posts: 425
Joined: Jun 2015

Hi,

Sounds like your leakage problem is well under control, I wish mine had fixed itself that quickly.  The ED should fix itself also over a peroid of time, 3.5 months it not a long time to fix the ED.  My doctor put me on Sildenafil Citrate 20mg which worked better for me that Cialis and costs a lot less money than Cialis or Viagra.  Consider the good points, hopefully your PCa is gone, leakage problem is well under control, sex life I hope will improve in the next several months.  Your getting there, keep on moving forward.

Dave 3+4

Jimbolaya
Posts: 1
Joined: Mar 2017

Dear MK1965,

    Your recovery is very similar to mine. Yours seems to have been a bit more painful, but the erection and orgasm issue makes me think I am hearing exactly what I have been going through. Because of thenerves that were severed I am unable to have the erection without a mechanical aid. It took me a while to come to that conclusion and when I finally did and got the pump (manual as I am not a rich man and my insurance is not so good) my intimate moments with my wife have come back.

    It took some time getting the feeling of orgasm back.  It didn't happen right away but it did come back.  It took some time and practice. I can liken my experience to learning how to walk again...no, to learning how to drive.  It was stressful and terrifying at first.  All that went wrong at first are things we talk about privately and laugh about  It takes time, patience and practice.  Dont Give up hope.

MK1965
Posts: 164
Joined: Jun 2016

From what I read on this and other forums, my total lack of sensations in penis and perineu, is not very commo. 

Jimbolay and one guy on another forum described very similar almost identical feeling that I am facing after my RP.

i might sound complainer and very impatient but I am not. As time is passing by I am worid more and more about my problem. I am already at 4+ months post surgery and was not able to experience what others experienced in the first 4-6 weeks post op. I am wondaring what is holding me back. I am healthy 52 y/o who is non drinker, non smoker, very active, not using medication except Cialis and Oxybutinin, Vit D3 and Glucosamin. In ED department, I am still ABSOLUTE ZERO. No signs of life even after 20'mg of Cialis. I started VED but no success with that. My penis go soft in seconds right after pulled out of VED devise.

I am depressed, sleeping very poorly, having nightmares related to cancer and prostate surger. It sounds like I developed PTSD. Anyone here with same experience? 

Appreciate comments and if any one have to share similar experience.

MK

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3250
Joined: May 2012

Mk,

Your disappointment continues.....damn.

I do not recall men ever mentioning nightmares here, but medical experiences can definitely cause PTSD. The symptoms can vary among a wide range of possibilities,  but some professional consultation is probably due in your case.

I do not say this in judgement: after being crushed in my auto accident decades ago, and two-year's rehab, I got diagnosed with it, and in fact was part of the clinical trial that got the best-known SSRI anti-depressent approved for PTSD treatment.  Ironically, the SSRI drugs are known to frequently cause or worsen ED. I have not taken an SSRI for decades now.

I recommend you see a counselor.  Intelligent people know there is no reason for stigma in doing this.

Since the catastrophic injuries, I have had three subsequent, severe auto crashes and two cancers, but have had no PTSD symptoms for many, many years.  People can and do evolve out of even that problem

My thoughts,

max

VascodaGama's picture
VascodaGama
Posts: 2966
Joined: Nov 2010

MK,

I also believe that you are experiencing stress. The status could have started at the occasion your doctor told you've cancer. You may think that you did accept positively the diagnosis at the time but you did not realize of the complications involved (it happens to all of us). In fact your mind never freed itself from the worries of the unknown. Along the four months each event is also sinking you deeper, making you to feel down and seeing your life going from a natural state to the unnatural that you never though it to exist.
This is all new to you and causing you distress. You need mental rehabilitation to start accepting your newer you.

I do not think that drugs will pull you up and out from the problems or the deep depression. You need to use your mind to rehabilitate your mental status. Any thing you do with pills or pumps or etc, to get a quick fix will never work if mentally you are not prepared to accept the facts totally.

In any case do not think that it is only you. We survivours in this forum all have experienced similar moments. Each one reached to a solution at their own way. Not doctors but family or a very close friend is the best companion to overcome the situation.
Along my 17 years of PCa related events, I found that knowing in advance what to expect has given me that peace of mind so necessary to accept things. I spend many hours researching and try being in pair with the newer medical discoveries/inventions on prostate cancer. Many get involved in hobbies they find to like and entertain their minds for hours. Joining a gym, meeting group of people away from PCa, walks, the thrill of a Harley-Davidson country trip, or meditation sections (yoga) with a tutor, etc, these all I have seen here being posted.

Just try something you like very much to do and go for it. That will create your Willpower.

Best,

VGama

MK1965
Posts: 164
Joined: Jun 2016

Thanks Max And Vasco.

Might be hard to believe that such event like planed surgery can cause so much mental suffering. I found someone on another forum who experienced same symptoms post op. He is Medical social worker from California. I can mirror all his experience as carbon copy. Possible or not, it is happening to people. I do not know how often but it happens. And to be honest, I am not lonely guy. I work 50-55 hrs a week and do some other stuff in my free time. I walk my doge to the park almost every day for 45-60 minute and I go to gym 3-4 times a week. I can fall asleep fairly quickly but my sleep does not lost for long. Waking up having bad nightmares most of the time related to surgery and Ca. After that, I have trouble to fall asleep again and spend most of the night just tossing in bed. When alarm goes off, I fell terribly tired and barely can get out of bed. To get me moving thru the mornings, I need lots of strong coffee to get going. Hard to concentrate on the job that I really like and put lots of pride in it.

I am healthy guy and list I want is to be on depression medication. Already, have enough trouble with ED post op.

This surgery was not my first surgery. Had TURP and sinus surgery before without any probless post op and was feeling great week or two after surgery. This RP hit me very hard. I anticipated problems and knew about them but did not expect to be such hard as it is.

MK

Clevelandguy
Posts: 425
Joined: Jun 2015

Hi,

Sounds like you might need to see a psychiatrist or some other type of metal health provider.  The continuing nightmares would really bother me.  If it was me I would want to find out what's going on, why do I keep having the nightmares?

Dave 3+4

MK1965
Posts: 164
Joined: Jun 2016

Hi all,

just want to share good news. Started TRIMIX a month ago and today was my 10th self injection of TRIMIX.

Trimix gave me erection every time but today was my first sex with penetration and my wife and I enjoyed it very much. I was feeling like that was my first sex ever. What  a happy day again. I will remember this day for the rest of my life. 

MK

Old Salt
Posts: 720
Joined: Aug 2014

Nice to read that you made another significant step forward.

VascodaGama's picture
VascodaGama
Posts: 2966
Joined: Nov 2010

Wonderful news. Born again.

I recall when you compared the returning of erections as a declared brain death. You are alive and that is your newer you. 

Hope you enjoy and that the cancer story is over forever.

Best,

VG

Clevelandguy
Posts: 425
Joined: Jun 2015

Hopefully all the bad stuff is behind you.

MK1965
Posts: 164
Joined: Jun 2016

Want to update followers: Today is my 7 months post RALP.

Only good news is that TRIMIX works every time I use it. Erections are lasting between 1.5 - 2.5 hrs with dose of 0.1 ml  which is equal to 10 units. Here is the mixture I use 150mg/ 5mg/ 50 mcg - full strength. Sometimes penis stretches nicely but still short minimum 1 inch from prior tu surgery and is not rock hard but it is useful For penetration.

Other times it becomes rock hard but it does not stretch well, up to 2 + inches shorter from prior to surgery but it is bigger in circumference than in first case. In this rock hard and short scenario,  penis becomes painful and I can not wait to go to soft. Per urologist, it will get to same with every injection with time.

Would like to know if this is normal response and if others experienced something similar.

Other than actual response to TRIMIX,  my penis is still totally in hibernating state. No slightest spontaneous response and still no response to Cialis. It bothers me that is always totaly retracted in my body.

Overal, I feel better mentally and physically now compared to 2-3 months ago.

Also, yestready was my first anniversary of my TURP which led to prostate Ca diagnosis.

Wish to every one who is in post RP time fastest possible recovery and back to normal time.

Also, want to thank everyone who supported me in my dark times.

MK

 

Clevelandguy
Posts: 425
Joined: Jun 2015

Hi,

Glad to hear things are improving, at seven months,  I would think that you still have some healing to do.  I noticed changes for the better into my second year post surgery both in urinary control & irections.  Keep on healin guy................

Dave 3+4

MK1965
Posts: 164
Joined: Jun 2016

At 9+ months post RALP, I can report that my 3rd post OP PSA was <0.1.

I still have some stress incontinece but that is something I can live with.

On ED side, I have nothing new to report. Still ABSOLUTE ZERO down there. Nothing spontaneous by now. 

Still no feeling, no stirrings, non existent orgasam, no any succes with Cialis, Viagra, VED, nothing with manual stimulation.

Trimix still works most of the time. Did not recovered any length and girth, still2+ inches shorter and still pathetically small and tiny while erect. Non usable.

I wish at least I could have better and more satisfying orgasam but no luck with that either.

Not much of hope left with being so long at point zero. Still hibernating .....

According to urologist, I already exhausted all my non invasive options. Just wait for miracle to happen.

MK 

 

 

 

 

 

 

 

 

 

 

 

 

VascodaGama's picture
VascodaGama
Posts: 2966
Joined: Nov 2010

I read many "still"(s) in your posts but no "if"(s), and such miracle may never come without a strong will to propel it. You need to work on your willpower, on that thing visual or visionary that arouses you in sex. Your partner may help but you can try external means to exalt the excitement mentally. Trimix is just an external complement with no mental effects. Your mind must be put into action. Porno is used by physicians to manipulate excitement. A third partner affair may be sufficient or even the help of a pro that can put you back on the rails. Then, just push it forwards.

Congratulations on the remission.Your surgeon must be pleased. He knocked down everything.

VG

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