Post Surgery Blues: Hi everyone, It's... - Prostate Cancer A...

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Post Surgery Blues

Tovok31 profile image
14 Replies

Hi everyone,

It's almost three months since my RP surgery in September. and to date my urologist has said nothing about post surgery treatment except "we will see." My PCP doesn't know what the next steps should be or what treatment plan should be in place. this is most frustrating.

Its also frustrating because I am reading that many members of our community are having erections (semi-hard) two to three weeks post surgery. I am not sure why unless its because of the type of surgery performed (cyber-knife, robotic etc).

Not only am i not experiencing any kind of erections I don't even have a sex drive at the moment, which could seriously endanger my relationship of 11 years. He wants to and sex is the further thing from my mind, partly because i can't perform and I don't have a desire for it (totally not me). I don't even have the drive to masturbate, for "medical reasons" to keep the muscle working.

The only thing that has let up has been the uncontrollable urinating. Exercising and kegels are helping but i will admit at a slower pace than I would have preferred.

Any non-depressing advice for an active man with the blues. if not i may have to runaway to monastery to live out my days. (That last sentence was a joke!)

Man with the blues!

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Tovok31
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14 Replies
Tall_Allen profile image
Tall_Allen

It would be unusual to have functional erections this soon after surgery. But you should be on a penile rehab program - ED meds, vacuum pump, trimix injections, frequent masturbation. Libido is mostly psychological -perhaps psychotherapy may elp.

Tovok31 profile image
Tovok31 in reply to Tall_Allen

Thanks I would think the same thing as too the penile rehab. But there is no treatment plan in place at all. I’ve tried to talk to my urologist but as o said before he only says we will see.

Tall_Allen profile image
Tall_Allen in reply to Tovok31

Tell him you want ED meds (cheaper from overseas) and tell him you want tri-mix. Here's an instruction manual:

amazon.com/Saving-Your-Sex-...

Tovok31 profile image
Tovok31 in reply to Tall_Allen

Thank you I will mention this

Dreamweaverman profile image
Dreamweaverman in reply to Tovok31

Hey T, Also make an appt with Dr. Muhall's office at MSK. My PCP and urologist didn't have any advice for me post surgery either and Tall Allen suggested I see this doctor. They are all about ED rehabilitation and sexual function. Call or text me and I can send over the info sheets I was given.

jimreilly profile image
jimreilly

Damn it, he should have talked about post-surgery sexual rehab BEFORE the surgery. The recovery varies a lot from person to person--yes, some people do have erections pretty soon, but other people don't. But the rehab is important. Looks like you're going to have to be persistent, insistent, assertive, whatever the right word is. And Tall Allen's suggestions are right on.

jimreilly profile image
jimreilly

P.S. I'm glad to hear the incontinence is improving...being relatively continent will make sex more practical and pleasing once your erections come back!

Watchung11 profile image
Watchung11

Well all we can do is share our own stories. I am now 11 months post robotic surgery and so far all psa tests are clear.

I have been on Sildenafil 20 mg a day and 100mg every 5 days, a "challenge dose", helps erections etc. I think I learned that it wasn't worth worrying about erections. Might sound dumb but the more I think about it the less it happens. So after 3 months I had glimmers and uncontrolled peeing got less. After 6 months there were real improvements and masturbating worked, probably 70% erection. After 9 months it is pretty good almost back to normal except orgasms are dry of course, that isn't the major deal I expected. So my theory is take the pills and dont try too much, allow nature to do its thing.... for me it's worked well so far.

Jaffa_2001 profile image
Jaffa_2001

I struggled for a year without any action downstairs despite taking various ED drugs like viagra etc. My surgeon just said give it time and keep taking the meds. I also used a pump on a few occasions, whilst watching porn, and then suddenly things started to improve. My erections now are much better, OK not like the stonkers I got before surgery, but our bodies all heal and behave in different ways.........hang on in there. The NHS here in the UK allows me to have 5mg of Cialis a day and I can also use 25mg viagra boosters if needed. Hope things improve.

Terp2017 profile image
Terp2017

I feel your pain. If you don't like the advise from your doctor, go talk to a new one for a second opinion. You are not married to him after all.

Like the others said we are all different and the surgery effects us all differently. Be kind to yourself, I know when I get started with my partner it turns me on, it just takes longer for the big O. My problem is getting him interested,

PCGeorge profile image
PCGeorge

I would strongly urge you to go to Memorial Sloan Kettering in NYC for a consultation. Their approach to post surgery issues (I did not know at the time of my diagnosis of their superiority in the field) is like night and day compared to my urologist. Their physical therapy for pelvic floor rehab far outshines what my urologist office called PT/Rehab. Their sex rehab approach is also deeper and seems like better science to me. I had an artificial urinary sphincter device implanted at MSK as the incontinence did not improve after surgery. The PT after this surgery made a difference. If you want specific doctors name and contact info please let me know.

DanWinters profile image
DanWinters

Don’t get down. I have a medical background and I am very impatient knowing the right answers. Some may say they are having erectioms nit is they have a full robotic prostatectomy at 3 months the this is highly unlikely. I have taken 100 of viagra and with very appealing visual stimulation at gym had some lengthening to almost my erect size bit still flacid looking and no way penetration ready. Figure out use of the pump that is comfortable for you whether it is go in bathroom use it and come out with the erect penis to your other half. No it isn’t the same and not ideal. But it does feel good once you get the hang of it. I am trying not to get too blue but totally understand where you are coming from. I will be asking about injections my next check up and psa draw so I can feel like I have a normal wrection a couple of times a week and then I won’t mind the pump the other times. I didn’t have any interest in sexy either but now that I have started the pump penile therapy/rehab I do enjoy it. You will lean urine when masturbate or during sex and may have to open your mind to that fetish ( I have and it isn’t so bad)

As far as irony I was the same at about 2 months. It clicked and I had control. Not 100%. I went to work with. O lad this week and was OK. If I jog I have to wear one for now. With the first few steps I would feel dribbles. At 3 mo the 10 days no dribbles with lifting weeks. Still with running and occasionally with a movement of some sort no rhyme or reason.

Keep the faith and don’t believe everything you hear.

I also just said I want a pump I am sexually actively and so. It want to give it up. I started playing with the punk at 8 weeks. I was scared. But tell your physician what you expect. You are the customer. He/she is being paid for a service.

Some need to be prodded into action if I had waited in my primary to send me to a urologist it would have been to late for me. Has taught me a lesson. Ask for what you need and want.

MarkBarnes profile image
MarkBarnes

I haven't heard of anyone having erections 2 to 3 weeks post surgery, although possibly with radiation (which tends to take months for the decline in erectile function).

I wouldn't even think of sex for the first 3 months, but during this time you should speak to a sexual health doctor...most likely found only at big urban medical centers. They will have all the info and options (which aren't always great, but we have to be thankful that they exist). This way you can get info and get on the path to a sex life.

Also, my medical team submits to insurance a plan for "penile rehabilitation" (I still smile when I use that term). Taking cialis (which should be covered by insurance, albeit with some paperwork) will keep the blood flow and help prevent atrophy (which can be irreversable).

Good luck

Handdrummer777 profile image
Handdrummer777

Sorry for your blues! You MUST find a way to create erections or risk penile atrophy. I can't promise miracles, but please try the Joyloop, a simple device I developed which you make yourself literally in 5 seconds.

Please look at my post "Here is the file -- Loop Instructions" and click on the link. I'm imploring everyone I can with treatment-induced ED to try out this device! You just may be surprised. Best of luck to you for a happy sex life! And remember if everything fails, there is now an AMS penile implant and procedure that does not result in penis shortening.

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