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ED after prostatectomy? Any first hand experiences overcoming it?

Posted by robertmizek @robertmizek, Oct 3 11:55am

I originally had brachytherapy in 2020. I chose that so I could continue my active sex life with my wife. The cancer responded favorably and the good life continued for three more years. Unfortunately PCa came raging back and the only option was salvage prostatectomy so now I’m dealing with severe ED 8 months after surgery. Mild erections are possible without Viagra but require a lot of stimulation to get things going. Even that is a victory because I’m also on ADT. I guess I have a strong constitution.

My doctors have said that it takes at minimum of 12 months for the nerves to heal and that it’s more often 18-24 months. 😡

What do other POST SURGERY PCa survivors have to say on this? Anyone have good news?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

robertmizek | @robertmizek | Dec 4 4:55pm
In reply to @j5225 "Underwent robotic nerve sparing surgery to remove prostate. The surgery went well, the cancer is gone..." + (show)
@j5225

Underwent robotic nerve sparing surgery to remove prostate.
The surgery went well, the cancer is gone and I have had no problems with incontinence.
At first follow up with surgeon was given a tadalafil prescription and told to get a vacuum device and use it.
Using the device is just unpleasant. After a few minutes everything just hurts and I stop. The surgeon concurred and said if it starts to hurt stop. This has continued for months I use the thing for a few minutes a day then when the pain starts I stop. While it is clear that blood is reaching my penis it is not an erection.
On the extremely rare occasions (3 times in 9 months) when it does not cause pain it is still what I would call unpleasant and I am uncomfortable for the balance of the day.

The surgeon keeps touting the injections but my concern with them is if they make things hurt like the vacuum device how long will that last. Will it be minutes, hours or days ? The pain from the vacuum device is severe, on the pain scale it's a 9 or 10 . But with the vacuum device when I stop the pain stops, mostly. The thought of the pain occurring and not stopping is not at all a pleasant one. The surgeon can not answer the question and indeed cannot even tell me definitively how long an erection will last after an injection. She just seems to think they are the answer. I'm at this point just assuming I may be in the cohort that never recovers sexual function and have simply given up on ever having sex or orgasm again.

I thought it might be worth asking people here that have had the surgery and are using the injections a few questions.
How exactly do the injections work is it injection = erection or injection + stimulation = erection?
How painful are the injections?
How long does the erection last?
Is the erection ever just painful?
Do you even have the desire for sex or do you just not care and only do the injections for your partner?

Jump to this post

Happy to share my experience with you. We are all brothers in this stupid disease.

I was given a prescription for Tadalafil right after surgery, but it gave me such a was given a prescription for Tadalafil right after surgery, but it gave me such severe headaches that I had to discontinue it. I now take 25mg of sildenafil each night before bed to help encourage blood flow to the penis and stave off atrophy.

I tried a vacuum device/pump about six or eight weeks after surgery. I found it too uncomfortable and painful so I stopped and gave up on that.

I found that despite being on both first and second generation ADT drugs I was able to reach orgasm with concerted solo activity while either flaccid or semi flaccid. The orgasms were so incredibly weak to start that I almost lost hope. I went for pelvic floor therapy and learned to do powerful kegels that greatly increased the strength of orgasms and made them easier to achieve which made it worthwhile to pursue the next step in recovery: injections.

I’ve been doing injections for two months. The results are impressive. Once the dosage was dialed in I was close to where I was with rigidity and erectness a year before surgery, much better than the minimum needed for intercourse. I’m only on Bimix not trimix so I’m only good for an hour at full hardness but it stays semi erect for another hour or two. It feels natural and it’s great to see and feel like my old self.

The pain is no more than a sting that only lasts for a couple minutes until a full erection is reached.

My self image suffered without the ability to have an erection for 8 months and I’m glad to be functional again.

Good luck on your journey for a full quality of life.

REPLY
jeffmarc | @jeffmarc | Dec 4 7:36pm
In reply to @j5225 "Underwent robotic nerve sparing surgery to remove prostate. The surgery went well, the cancer is gone..." + (show)
@j5225

Underwent robotic nerve sparing surgery to remove prostate.
The surgery went well, the cancer is gone and I have had no problems with incontinence.
At first follow up with surgeon was given a tadalafil prescription and told to get a vacuum device and use it.
Using the device is just unpleasant. After a few minutes everything just hurts and I stop. The surgeon concurred and said if it starts to hurt stop. This has continued for months I use the thing for a few minutes a day then when the pain starts I stop. While it is clear that blood is reaching my penis it is not an erection.
On the extremely rare occasions (3 times in 9 months) when it does not cause pain it is still what I would call unpleasant and I am uncomfortable for the balance of the day.

The surgeon keeps touting the injections but my concern with them is if they make things hurt like the vacuum device how long will that last. Will it be minutes, hours or days ? The pain from the vacuum device is severe, on the pain scale it's a 9 or 10 . But with the vacuum device when I stop the pain stops, mostly. The thought of the pain occurring and not stopping is not at all a pleasant one. The surgeon can not answer the question and indeed cannot even tell me definitively how long an erection will last after an injection. She just seems to think they are the answer. I'm at this point just assuming I may be in the cohort that never recovers sexual function and have simply given up on ever having sex or orgasm again.

I thought it might be worth asking people here that have had the surgery and are using the injections a few questions.
How exactly do the injections work is it injection = erection or injection + stimulation = erection?
How painful are the injections?
How long does the erection last?
Is the erection ever just painful?
Do you even have the desire for sex or do you just not care and only do the injections for your partner?

Jump to this post

You go to the urologist to test out using the injections. They try to start you on a dose that will not give you an erection for a long period of time, If it does, they can reduce it in the office while doing the testing. I know one person mentioned they did have some pain using Trimix, But it was just a matter of getting the dosage right. It seems to work well for most people that have tried it.

REPLY
1 reply
Tom | @tom86 | Dec 5 12:27pm
In reply to @jeffmarc "You go to the urologist to test out using the injections. They try to start you..." + (show)
@jeffmarc

You go to the urologist to test out using the injections. They try to start you on a dose that will not give you an erection for a long period of time, If it does, they can reduce it in the office while doing the testing. I know one person mentioned they did have some pain using Trimix, But it was just a matter of getting the dosage right. It seems to work well for most people that have tried it.

Jump to this post

Any comments on dosage? Wondering what the average is for Trimix? Starting at 5, then 10 on to 15. The shot itself is quick and painless (in my opinion). I understand you can go as high as 50, however, wondering if that is the norm or is there a mid range that seems to get where you want to be. TYIA
Tom

REPLY
1 reply
pbrowni25 | @pbrowni25 | Dec 5 2:23pm
In reply to @tuckerp "My surgery was Feb 2020. I was having no issues with ED prior to surgery. I..." + (show)
@tuckerp

My surgery was Feb 2020. I was having no issues with ED prior to surgery. I had RALRP. No other treatments. Dr. gave me a prescription of Viagra to start taking. I took one pill with no results. My wife also got cancer shortly after. I have had zero stimulation and no drugs. It was probably about the 2 year mark I noticed some life down there. I have continued to have a partial during the night. Whatever they call that early morning erection. 6 months ago I went to Mayo urology. He gave me a prescription of Cialis. I took a couple of pills with no effect. Still no stimulation. About 2 weeks ago I woke from a vivid dream and had a full erection. My first one. It will be coming up on 5 years. Nothing since. So my case is almost 5 years with no stimulation and no self stimulation. My Mayo urologist had explained that I might not be able to after such a long period. You use it or lose it. I am 72. About a year and half ago I did start Testosterone cream. My T runs about 700. I have complete desire just no tools.

Jump to this post

Same here. I had it removed 2015 and no drive for it although sometimes I awake to semi....
I take Zolpidem (10mg) every night for sleep. Also just prescribed Trazodone (50mg) also for sleep.I void four + times a night. I can't get an straight answer. Right after surgery I now know I have ...Neuropathy...My feet burn bad when I have a full bladder.
Anyone else??

REPLY
dgd1953 | @dgd1953 | Dec 6 8:31am
In reply to @tom86 "Any comments on dosage? Wondering what the average is for Trimix? Starting at 5, then 10..." + (show)
@tom86

Any comments on dosage? Wondering what the average is for Trimix? Starting at 5, then 10 on to 15. The shot itself is quick and painless (in my opinion). I understand you can go as high as 50, however, wondering if that is the norm or is there a mid range that seems to get where you want to be. TYIA
Tom

Jump to this post

I started Trimix #8 injections in October. My urologist had me start at 50 units with instructions to go up/down 10 units from there each time with a max of 100 units which is where I eventually ended up. The injections had a positive effect, but not enough for penetration. I am now on Trimix #9 using the same process (latest injection was 90 units) with similar results unfortunately. There has also been some discomfort along the top of the penis that lingers after sex for a few hours. The discomfort seems to be worse with #9 than it was with #8. I understand this happens with a certain percentage of men and it will be part of my next discussion with the urologist coming up soon. Hoping to find the right medicine and the right dosage soon.

REPLY
2 replies
robertmizek | @robertmizek | Dec 6 10:53am
In reply to @dgd1953 "I started Trimix #8 injections in October. My urologist had me start at 50 units with..." + (show)
@dgd1953

I started Trimix #8 injections in October. My urologist had me start at 50 units with instructions to go up/down 10 units from there each time with a max of 100 units which is where I eventually ended up. The injections had a positive effect, but not enough for penetration. I am now on Trimix #9 using the same process (latest injection was 90 units) with similar results unfortunately. There has also been some discomfort along the top of the penis that lingers after sex for a few hours. The discomfort seems to be worse with #9 than it was with #8. I understand this happens with a certain percentage of men and it will be part of my next discussion with the urologist coming up soon. Hoping to find the right medicine and the right dosage soon.

Jump to this post

I’m hoping they can find something that works for you. I tried TRIMIX but had to abandon it because of lingering pain. I am now on BIMIX, 40 units which seems to get the job done.

May I respectfully suggest you ask your urologist if you can also take either a full 100 mg dose of sildenafil which is generic Viagra or at least 50 mg. If you’ve got blood flow issues that may get you where you need to be.

One of my good friends who is also a prostate cancer Survivor never found a recipe that got him to where he needed to be so eventually he went with an implant. His recovery was unusually long; three months but once he got over that he’s been delighted with the results.

If in the future, injections, no longer get the job done for me. I will consider an implant. My friend tells me it’s well worth the short-term pain and recovery.

Best wishes for success and achieving the quality of life you want to live.

REPLY
jasonfarmer | @jasonfarmer | Dec 7 7:30am
In reply to @dgd1953 "I started Trimix #8 injections in October. My urologist had me start at 50 units with..." + (show)
@dgd1953

I started Trimix #8 injections in October. My urologist had me start at 50 units with instructions to go up/down 10 units from there each time with a max of 100 units which is where I eventually ended up. The injections had a positive effect, but not enough for penetration. I am now on Trimix #9 using the same process (latest injection was 90 units) with similar results unfortunately. There has also been some discomfort along the top of the penis that lingers after sex for a few hours. The discomfort seems to be worse with #9 than it was with #8. I understand this happens with a certain percentage of men and it will be part of my next discussion with the urologist coming up soon. Hoping to find the right medicine and the right dosage soon.

Jump to this post

Dgd I found Trimix was uncomfortable for @ 1 hour afterwards so laid back in recliner helped a lot. After @ 6 months I find there is no longer discomfort, I guess my body adjusted to it. I am very happy with Trimix, very effective for me 90 minutes of erection. I think doctor can adjust the concentration of your mix so you can use less with same effect. Ask doctor questions about any problems is sometimes needed because sometimes they may assume everything is good.
I am at 26 units now was up to 35 at one point. Hope to best for you.

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