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Peyronie's Disease

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Posted 2/16/2013 7:29 PM (GMT 0)
Hi everyone. Been awol for awhile.
Late last year, a tumor was discovered in my right testicle. Given my history, my Oncologist recommended having it removed, which I did on January 16. The pathology was benign. Also, late last year, when I started the penile injection therapy, I noticed a constriction at the base of my penis, causing it to have an hour glass like shape. It also "hinges" to the left. Dr. Mulhall at Sloan did an ultra-sound and diagnosed this as Peyronie's disease. No one knows what causes this condition, which is an excessive scarring of tissue inside the penis, brought about by sometime of trauma, which causes it to curve up, down or to either side. I wish I could remember when this happened----seems like it would be memorable---but I can't.

Dr. Mulhall also said that this condition results from prostatectomy --- and no one knows why. On this site, the most recent thread on this diseases is several years old. I was just curious as to whether others have experienced this.

On a positive note, I will be completely cleared to start riding my bike in 10 days. Can't wait!

Fred
Posted 2/16/2013 7:47 PM (GMT 0)
I developed after my prostatectomy and/or use of trimix what I call  Peyronies disease, I've never actually shown it to a doctor to be sure. All I know is I was pretty straight before surgery and now I curve significantly to the left. I also notice an old and faint scar running from the base of penis to the head on the left side. I don't know if that came from the surgery, or from trying to use a VED or the injections. I did try treating it by wearing a traction device during the day which got too aggravating after awhile so I quit that, and now I only inject trimix on the R side (since scarring causes the penis to curve towards the scar) and use as little as needed to get a decent erection for sex. Thankfully after 4 years since surgery I notice the curve is less than it was so it's not really a problem, doesn't affect the sex with wife anymore....
Posted 2/16/2013 10:57 PM (GMT 0)
I was told that this is one of the possible SEs or trimix. I began getting it after about a year, my penis began curving up. So I rarely use trimix any more, especially since I've regained a bit of stiffness. I never inquired if there's a fix for that.
Posted 2/17/2013 5:17 AM (GMT 0)
I developed Peyronie's after prostatectomy and injections of bimix. Not sure which was the culprit. It got worse until it was a significant distraction from intercourse. My understanding is that it is about 5000x more likely to occur in those having had a prostatectomy over the general population of men.

I ended up getting a penile implant that completely mitigated the problem.
Posted 2/17/2013 1:54 PM (GMT 0)
Im, can you say a bit about your implant? Are you satisfied with it? Was the operation to insert it OK?
Posted 2/22/2013 5:46 AM (GMT 0)
Reachout, sorry I didn't respond sooner - I get busy sometimes and don't visit the forum.

My implant surgery was extremely successful, and I am very happy with it. The best part is that I have no anxiety now about whether I will be able to perform, I can be spontaneous, and for the first time ever, I can stay hard as long as my wife wants me to.

Regarding the surgery, it was outpatient, although many times it involves a hospital night stay, depending on your doc and you. Compared to the prostatectomy, it was a breeze. You stay off your feet for a week and then resume normal activity, although you need to keep it partially erect for a couple of weeks or so to make sure it will point outward and not downward. Length is usually slightly less, but with the LGX that I got, you get some length back over time of regular operation. I am now where I was before the implant surgery. You can use it comfortably about 6 weeks after the surgery. As I mentioned, it fixed the Peyronies, which was a Godsend for me.

I'll be happy to answer any questions you have either in the forum or offline if you want to contact me.
Posted 2/22/2013 2:03 PM (GMT 0)
Did any of you guy with Peyronie's disease lose length I have recently been diagnosed

with Peyronie's disease I noticed a loss in length.Now I'm considering a implant will I

lose more length there will be nothing left omg.

Rodger. mad

Posted 2/22/2013 2:42 PM (GMT 0)
Yes, I have lost about 1.75 inches. depressing.
In researching this disease, it seems that 18 months is a threshold period, where it gets as bad as it is going to get or it starts resolving itself. There is a lot of men who use a traction device, which I purchased but could not bring myself to use. I think my peyronies was caused by the catheter. My penis was swollen and twisted --- along with my scrotum ---- I mean it looked like an alien crab or snail. Not sure about whether implant will get back length. If you find out, let me know. Hang in there, it is depressing, but the implants work really really well.
Fred
Posted 2/22/2013 2:48 PM (GMT 0)
Thanks Im_Patient.

That is great news! I have lost some sensitivity on the head of my penis. My Uro said it was because some of the nerves were removed, but that it could come back. Have you experienced this and does the implant make it more or less sensitive. Thanks, again for the response.

Fred
Posted 2/22/2013 2:55 PM (GMT 0)
Im, thanks a lot. Glad that it has worked out so great for you. An implant is something I may well consider in the future. If so, I may contact you directly to learn about the specific type you used, how it's operated, etc. It's always hopeful to know there is something else out there.
Posted 2/23/2013 4:47 AM (GMT 0)
Fred, I had no loss in sensitivity from the prostatectomy, but over the course of 4 years after it, as the Peyronie's set in, I lost about 20% length, and of course it was bent as well. The implant straightened it out, and the surgery resulted in a little decrease in length, but the LGX model that I got enables you to regain a modest amount of length with regular operation (I inflate it as much as possible daily in the shower), so I am back to pre-implant length. I never regained the length I lost post-prostatectomy, though.

For a few months after the surgery, you have a bit less sensitivity, especially in the head, but at 1 year I am back to full sensitivity (I believe at 6 months it was better).

I understand that for more severe cases of Peyronie's, the Titan brand is more successful. If you were to go forward, your doc would recommendations of course.

Best wishes
Jeff
Posted 2/23/2013 4:39 PM (GMT 0)
Thanks, Jeff. Appreciate your candor. Your story is like a light at the end of a tunnel. Best regards,

Fred
Posted 3/22/2015 2:50 PM (GMT 0)
I am so pleased to see someone posting about Peyronies on this sight. I can't believe how alone I feel going through this whole ED/Peyronies mess I have been through. I don't believe any Doctors anymore about anything to do with Peyronies or surgery as they seem self serving and dont mind bending the truth in order to accomplish their agenda. I truly believe that the improper use of injections to achieve an erection is a major cause of Peyronies period. That you are rolling the dice everytime you inject. The Peyronies is mind bending as well as penis bending when you get it and I wouldn't ever wish it on anyone. That is why I am vocal about warning people about the injections. I had a perfect penis then after 25 trimix injections its bent like a coat hook. I don't really know what to do I don't trust anyone in the medical world for an answer to this problem as all I have witnessed is extremely expensive supposed cures that show no effect at all towards fixing the PD. The implant seems to be the answer but that is more surgery that might lead to more problems. My URO wants to do Xiaflex injections which have no real proven track record of success are extremely expensive. So your saying if you inject BEEHONEY into your penis it helps???
Posted 3/22/2015 11:12 PM (GMT 0)
Not that I think there will be many takers for bee stings as a treatment for Peyronie's, but I have to chime in when I hear something that concerns me.

The nerve that implements erections runs along the top of the penis (from the base toward the head), and for the same reason that you do not inject anything else there, you should not inject a bee sting there either.

No opinion on stinging yourself elsewhere - I have heard this as a treatment for inflammation of knuckles so that reasoning seems sound, but I suspect an MD might have other objections (risk of infection comes to mind). There might be some expertise with bee handling needed as well... but if folks are milking spiders and snakes, if there is something to this, I am sure someone will milk bees as well.
Jeff
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