ED treatments

Posted by Jim, Volunteer Mentor @jimhd, Feb 12 5:03pm

I've been seeing a urologist for a couple of years. The reason for my first appointment was mostly about urinary urgency and frequency. Oxybutinin has reduced the frequency, but not the urgency. At my last appointment, last week, we focused more on ED.

He listed 4 options for treatment. #1 was Viagra and its siblings. Done that and they quit working. #2 was a pump, which I tried. It's great for masturbation, but a real mood killer when used during intimacy with my wife. Even so, part of ED is the inability to maintain an erection. #3 is injecting a drug into the penis. Doesn't that sound like fun? But I know that it works for lots of men. That leads to #4, a penile implant. An implant has the highest success and satisfaction rate.

I'd like to hear what has worked best. I can read the articles online, but I'd rather hear about what your experiences have been.

Jim

Liked by Leonard

Hi @jimhd, thank you for sharing your experience and questions.

I'd like to tag @hodagwi and @glenner075 have experience with erectile dysfunction, some with these options, and may be able to share their experience.

Here are two articles that include video from a Mayo Clinic physician discussing ED treatments:

Treatment for Erectile Dysfunction – https://connect.mayoclinic.org/page/mens-health-1/newsfeed-post/treatment-for-erectile-dysfunction/
Online Treatments for Erectile Dysfunction – https://connect.mayoclinic.org/page/mens-health-1/newsfeed-post/online-treatments-for-erectile-dysfunction/

Liked by Leonard

REPLY
@ethanmcconkey

Hi @jimhd, thank you for sharing your experience and questions.

I'd like to tag @hodagwi and @glenner075 have experience with erectile dysfunction, some with these options, and may be able to share their experience.

Here are two articles that include video from a Mayo Clinic physician discussing ED treatments:

Treatment for Erectile Dysfunction – https://connect.mayoclinic.org/page/mens-health-1/newsfeed-post/treatment-for-erectile-dysfunction/
Online Treatments for Erectile Dysfunction – https://connect.mayoclinic.org/page/mens-health-1/newsfeed-post/online-treatments-for-erectile-dysfunction/

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Thank you, Ethan.

REPLY

@jimhd
Sorry Jim but I just now saw this oh I thought I would reply. Nothing like being a day late and a dollar short huh.

I have ED due to my epilepsy & the 300,000 seizure meds I've taken.
Just wanted to let you know that I use the drug Trimix and inject it. The injection may not be at the top of the list of fun things to do but if you do feel the injection at all it’s not as bad as you probably think. When I first heard about it I said there’s no way I’m going to do that. I know it sounds painful that’s what I thought too when I talked to a man who was using it. He said at most it’s no worse than a pin prick. In fact there have been several times I injected it when I never felt a thing, believe it or not. I feel it less then when I go to the lab to have blood drawn. The needle is very small. Don’t let the fact that it’s an injectable scare you off. Works great and works fast, in about 5-10 minutes but I have read it's recommended to wait 20 minutes from after injection however no physician ever told me that.
Take care,
Jake

REPLY
@jakedduck1

@jimhd
Sorry Jim but I just now saw this oh I thought I would reply. Nothing like being a day late and a dollar short huh.

I have ED due to my epilepsy & the 300,000 seizure meds I've taken.
Just wanted to let you know that I use the drug Trimix and inject it. The injection may not be at the top of the list of fun things to do but if you do feel the injection at all it’s not as bad as you probably think. When I first heard about it I said there’s no way I’m going to do that. I know it sounds painful that’s what I thought too when I talked to a man who was using it. He said at most it’s no worse than a pin prick. In fact there have been several times I injected it when I never felt a thing, believe it or not. I feel it less then when I go to the lab to have blood drawn. The needle is very small. Don’t let the fact that it’s an injectable scare you off. Works great and works fast, in about 5-10 minutes but I have read it's recommended to wait 20 minutes from after injection however no physician ever told me that.
Take care,
Jake

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@jakedduck1

Hi, Leonard. I hadn't noticed your name lately.

Trimix was one of the options my urologist talked about. It would surely be less invasive than a penile implant. I'm not sure why we didn't pursue it. As soon as surgery can be scheduled – who knows with covid19 running the show – I plan to have the implant, also called a prosthesis. The recovery sounds pretty painful for the first couple of weeks, and I'm not good at dealing with pain, even though I live with chronic neuropathy pain. But it seems to be the definitive treatment for ED.

I don't know exactly what has caused ED. It could be tied in with the # of meds I take, though not 300,000. I take a couple of anti-seizure meds for depression. It's possible that the problem is, partly at least, psychological. I've never talked with a therapist about that possibility because none of them have been qualified to address it.

Hope all is well with you.

Jim

Liked by Leonard

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@jimhd

@jakedduck1

Hi, Leonard. I hadn't noticed your name lately.

Trimix was one of the options my urologist talked about. It would surely be less invasive than a penile implant. I'm not sure why we didn't pursue it. As soon as surgery can be scheduled – who knows with covid19 running the show – I plan to have the implant, also called a prosthesis. The recovery sounds pretty painful for the first couple of weeks, and I'm not good at dealing with pain, even though I live with chronic neuropathy pain. But it seems to be the definitive treatment for ED.

I don't know exactly what has caused ED. It could be tied in with the # of meds I take, though not 300,000. I take a couple of anti-seizure meds for depression. It's possible that the problem is, partly at least, psychological. I've never talked with a therapist about that possibility because none of them have been qualified to address it.

Hope all is well with you.

Jim

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@jimhd
Hi again Jim,,
I just had a thought, have you ever considered trying the tri-mix before you have the surgery just to see if the less invasive method might be effective.
I thought the implant was procedure of last resort, only recommended when all other treatments file. I guess I’m more old fashion and behind times than I thought. One potential benefit, it may be cheaper in the long run. I remember when I tried Cialis it was $60 a pill.
if your mind is made up do you have the surgery fingers crossed that you don’t have any complications.
Take care Jim,
Jake

REPLY
@jakedduck1

@jimhd
Hi again Jim,,
I just had a thought, have you ever considered trying the tri-mix before you have the surgery just to see if the less invasive method might be effective.
I thought the implant was procedure of last resort, only recommended when all other treatments file. I guess I’m more old fashion and behind times than I thought. One potential benefit, it may be cheaper in the long run. I remember when I tried Cialis it was $60 a pill.
if your mind is made up do you have the surgery fingers crossed that you don’t have any complications.
Take care Jim,
Jake

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@jakedduck1 After I read your message, I did some looking and found the reason I opted not to do the injection $$$. And not covered by Medicare. That would make for expensive sex. I'm not really excited about the surgery or the recovery, but I am tired of living with no libido and no erections – for more than 3 years – and my wife isn't very happy about it either.

I'm putting the whole ED discussion on my agenda for my next therapy appointment on Wednesday. I don't think we'll be able to cover it in 1 session, but it has already come up, so I guess it will be a continuation of the subject.

Have a good week, Jake.

Jim

Liked by Leonard

REPLY

@jimhd
Good morning Jim,
Have you ever seen an endocrinologist Jim? Might not be a bad idea if libido issues exist. There are so many factors that could be at play here. Although ED can sometimes cause libido problems, if that’s the case your surgery should fix it.
You’re certainly right about the cost. It can be staggering depending on frequency. My medication Hass to come from a compounding pharmacy, hey sterile compounding pharmacy at that. I get mine from San Diego not exactly the Walmart of cities.
Have a great day,
Jake

REPLY
@ethanmcconkey

Hi @jimhd, thank you for sharing your experience and questions.

I'd like to tag @hodagwi and @glenner075 have experience with erectile dysfunction, some with these options, and may be able to share their experience.

Here are two articles that include video from a Mayo Clinic physician discussing ED treatments:

Treatment for Erectile Dysfunction – https://connect.mayoclinic.org/page/mens-health-1/newsfeed-post/treatment-for-erectile-dysfunction/
Online Treatments for Erectile Dysfunction – https://connect.mayoclinic.org/page/mens-health-1/newsfeed-post/online-treatments-for-erectile-dysfunction/

Jump to this post

Peyronies has eliminated the treatment of my E.D. with meds! Similar problem with injection and pump. My only option is surgery and Prosteties (?). Disappointing totally! Where do I go from here at age 77.

Liked by Leonard

REPLY

@glenner075
Hello,
Has your doctor mentioned Xiaflex as a treatment? It’s an injectable medication. I believe it basically desolves the scar tissue. Do you feel any bumps?One downside is it’s cost, I understand it’s more expensive than surgery.
Good luck,
Jake

REPLY

No input from my Urologist! No mention from Doctor about Xiaflex. Does it allow for the straightening of the Penis? Would you guess that the injection of Xiaflex would be more expensive than Surgery? Thanks much for your input and your suggestions.

Liked by Leonard

REPLY

@glenner075
It’s supposed to straighten it out but after reading these reviews which arent good I wonder, although these represent a fractional number of patients treated.
The doctor might have accurate statistics on how often it fails vs its successful outcomes.
I read surgery was most successful and Xiaflex treatment has a success rate of 66% supposedly. From the reviews I saw it doesn't look like the treatment for contractures is much better at least for the few who posted.
Jake

March 24, 2020
“I went through 6 series of shots. A series consisted of get a shot, wait 2 days, get another shot. Then you wait 5 weeks, start the next series. Each time after getting the first shot my penis, scrotum and entire groin area would bruise badly. Real struggle to go in 2 days later for that next shot… Literally one of the hardest things I've had to do in my life was lie there while a needle was stuck in my penis. But getting rid of that curve? Totally worth it – if it had worked, but it didn't. Unlike some of the other reviewers, I guess I should be grateful it's not worse.”

1 / 10

Keith
·
Taken for 6 months to 1 year
February 29, 2020
“I went through 3 sets of injections they came out with the bill before the last set of injections $51,000 dollars and didn’t help at all.”

1 / 10

Nineandonehalffingers
·
Taken for 6 months to 1 year
February 26, 2020
“Hi everyone, after suffering from Peyrones disease with 90 percent curvature I finally agreed with my urologist to have the xiaflex treatment. It was a disaster ,I am worse off than before the injections incredible shrinkage and still curvature I wish I had never gone through with it. Ruined my intimacy with my wife and psychologically messing me up. I highly recommend not having the treatment because it just doesn't work I have had 8 injections.”

1 / 10

Xiaflex hater
·
Taken for 1 to 6 months
January 17, 2020
“Terrible experience with Xiaflex! This is a very bad drug! It left me worse than I was! I wish I would have never done this. I felt a burst, worst bruising ever. So very painful! I still don't feel right, this has messed me up big time!!! This drug should not be used for this!! Rating this drug as a 1 is too high!”

1 /10
Didn’tWork123
·
Taken for 1 to 6 months
November 20, 2019
“Went though 2 cycles of shots. My 30 degree bend turned into a 90 degree bend. Sex is impossible now.”

1 / 10

Dave
·
Taken for 1 to 6 months
November 5, 2019
“The bend moved to the top middle from being closer to the tip. The bend is somewhat lesser but now the length and girth is a lot less also. Take your chances on that it will go away by it self. Not worth the cost, pain and decrease in size. Now what can I do ? Should be lawyers begging for my business with law suit. So annoyed!!!”

3 / 10

Mark
·
Taken for 6 months to 1 year
October 22, 2019
“Have peyronies with 90 degree bend. Did 3 cycles of Xiaflex total of 6 injections. Got a hematoma after the sixth injection. End of Xiaflex treatment. Still have a 92 degree bend up and now a 30 degee bend to the right. Total waste of time and money. Not to mention the pain of the injections and the hematoma. Insurance paid $30,000 for this treatment and total failure.”

Penisnomore
September 10, 2019
“Warning to men considering this treatment for Peyronie's. I had a curvature to the left which I wish for the love of God I had back. After months of treatments with Xiaflex I now how have it right in the top middle and worse than ever. Penis shrinkage and all. Hurts like hell to have sex, not to mention the emotional part. It is embarrassing. I do not know what to do.”

1 / 10

Sexlifegone
·
Taken for 1 to 2 years
August 6, 2019
“I was diagnosed with Peyronie's 2018. My primary physician sent me to a urologist who recommended Xiaflex injections. He said that the success rate was high. Well, that was a false statement. Xiaflex ruined my sex life and now instead of having curvature on the left side of my penis, it's now moved on top which the curvature is worse then ever. This has been an emotional struggle for me and don't know what to do. I'm sure a lot of men with this condition are struggling as well with emotions. My advice to all men with Peyronie's disease. DON'T GET INJECTIONS! IT DOESN'T WORK!”

1 / 10

Taken for 6 months to 1 year
June 19, 2019
“Three series of 2 injections (2 injections-1 injection, then the other in 2 days, 3 months between series, had 6 shots in 9 months). Horribly expensive and very uncomfortable during and after injections. No improvement—worthless—a medical businessman's scam. At least a auto mechanic guarantees his work.”

1 / 10

Bob
May 13, 2019
“I couldn't complete the full treatment of 4 double injection cycles. During the 3rd cycle, after both injection #5 & #6, I developed excruciating pain, radiating from my hips to my knees. Both times, the pain was so intense, I lost control of my legs and fell to the floor. The pain lasted 15 minutes. The doctor told me no other patient had experienced that reaction. During a subsequent visit, I was told that a second patient had. The treatment did decrease the Peyronie's bend from 40º to 30º. Another serious, negative side effect was that flaccid and erect penis length and girth shrank dramatically after treatment. The doctor attributed it to the Peyronie's disease, but I took pictures just before Xiaflex treatment, (10 months after the onset of Peyronie's) and after treatment, and the size difference is dramatic. ”

2 / 10
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Mike
·
Taken for 1 to 6 months
March 24, 2019
“Useless after five shots :(”

REPLY

Thanks for your input on Xiaflex! I'm certain I won "t try it. Thanks much! Glenn

Liked by Leonard

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@glenner075
I’d be leary to try it too.
Jake

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@jakedduck1

@glenner075
I’d be leary to try it too.
Jake

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Jake, Foregoing the “mysterious eliminate the Peyronies “ drug. Without trying, I can see the Prosteses surgery would be less Invasive and more successful. Best, Glenn

Liked by Leonard

REPLY
@jakedduck1

@glenner075
Hello,
Has your doctor mentioned Xiaflex as a treatment? It’s an injectable medication. I believe it basically desolves the scar tissue. Do you feel any bumps?One downside is it’s cost, I understand it’s more expensive than surgery.
Good luck,
Jake

Jump to this post

Jake, Dr. hasn’t recommended the drug that I cannot even spell!

Liked by Leonard

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