Restorex Users: Any advice?

@fritzo

On Amazon search for "silicone sleeves". It will come up with "glans protector". That is what you want. Plan on adjusting (cutting) those down as necessary. You typically need about 2" of length.

I had previously used a VED daily as directed following my prostatectomy. Night erections gradually improved and at about 5 months or so after surgery they went away. Months later I realized something was really wrong as trimix stopped working. I finally saw a specialist at 12 months after I realized things were much worse. Anyway , I had no incontinence at all after surgery and assumed the ED would pass...nope, not thrown clear of that train wreck.

Are you in this study as part of post surgery "penile therapy" or as a result of worsening ED?

@spino
There are a couple pilot studies out there and one larger scale study sponsored by Restorex so not a lot to go on. Both had a positive outcome. Keep in mind that the results of penile traction for a man who's tunica has contracted due to ED disuse or fibrosis is different when compared to a man using traction to stretch their healthy organ beyond what it was originally. Those studies tend to show mixed results. As a side note, Dr Patel told me there will be little gain in penile length recovery from traction therapy after 3 or 4 months of using the device.
https://www.trialx.com/clinical-trials/listings/320251/penile-lengthening-pre-penile-prosthesis/
https://pubmed.ncbi.nlm.nih.gov/21492409/

@beachflyer OK-that did the trick on finding them. If cutting them down, wonder if you end up with more than one out of each sleeve?

The post surgery recovery process appears to be very much a roller coaster ride...ups and downs. So sorry this happened to you. I've heard of this exact thing happening to others. Hoping your situation improves.

I'm about seven weeks post surgery and I requested a penile therapy specialist referral post surgery just because so many people here said it was important to do.

I've had one appointment with a specialist at Northwestern. He said I would be a perfect candidate for this trial and I figured being in a trial would force me to be compliant with doing the daily Restorex treatments. It seems like a chore, but if I have to fill in a log, maybe I'll do my chores.

I have no clue if it will be helpful or not, but I do have a friend who was Stage 4, has been through focal therapy surgery, radiation, ADT and more and is in full remission. He sees the same specialist and used the Restorex and has gotten great results.

I haven't been through the wringer like him, but hoping it helps. I do believe my nerve sparing was effective for me because I've had some response downstairs even at two weeks....but like you say, what is given can be taken away. Time will tell.

My specialist also said that I would be a good candidate for shockwave therapy. He acknowledged that insurance companies do not cover it. I asked if that is because it is still considered experimental. He said that it is because it is new, but that he has found that it is effective for the right candidates. However, he said there was no rush to do it and that I could still benefit later.

Thanks again for the really good advice!

@spino
So fritzo pretty well outlined it. The VED and traction are really two separate things. I dont think men who are recovering normally from prostatectomy need to consider penile traction (like Restorex) as they should be experiencing normal nocturnal erections that will take care of both the stretching of the tunica and oxygenation. As I understand it, the stretching does not help with oxygenation of the penis rather it breaks down any scar tissue and keeps the tunica from contracting...basically replacing the night erections that may be not happening in some of us.

@beachflyer In the current study that I will be in, the protocol is to use the Restorex for three months. After that, it is optional if you continue. But, good to know that any possible benefit from the device doesn't have to go on for years.

@beachflyer You're much farther down the road than me....and I'm sure you know all of this, but just clarifying for others that might read the chat.

Everything I've read and been told by the experts is that penile fibrosis happens because MOST prostatectomy patients do NOT have night erections because the erection nerves are either not preserved (had to be removed because of cancer close to the outside of the capsule) or if the nerves are preserved during surgery, they are mostly likely in shock for the first year. For some patients, nerve function doesn't recover for even 2-4 years.

The big issue is that the longer you go without erections, the more fibrosis that can occur. The more fibrosis, the more likely you will not regain function. All the sexual function docs boil it down to "use it or lose it."

One tool is the Restorex traction device. Restorex has been proven to help to undo penile shrinkage that happens to a lot of men post surgery. They also observed in those shrinkage, that men also reported a decrease in ED symptoms. So, this study that I"m enrolled in is currently focused to collect data to see if the device does actually decrease ED symptoms.

Hoping it does!

Sounds like an interesting study. Will watch for results posting down the road.

Well-my Restorex device arrived in the mail today. Let's just say it's a bit weird to see yourself stretched out that way.

• Traveling is going to make it a bit challenging. Guess I'll need a smaller box to do air travel without it getting crushed by baggage handlers. Not sure what the airport x-ray scanners will think.

• Going to have to really hope no one barges into our bedroom when I'm doing my stretch. That would be super awkward.

Not painful once you figure it out....but, yeah, it's crazy what we do post surgery.

I traveled with mine, took the pieces I was going to need for the week and put them in ziplock bag disassembled and took it through airport screening with no issue.
Have fun and enjoy your trip !

@beachflyer Good idea! I have discovered that you can put into a tilt position that makes it more compact...hopefuly TSA doesn't think it's a weapon.