HealingWell
Search Close Search
☰

RALP Peyronies and Xiaflex --

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/12/2015 3:32 PM (GMT 0)
 

A friend of mine went through a RALP about a year ago and he now has developed Peyronies just about like I did.

So this corellation between RALP and PD is getting stronger everyday for me in my little world. I know the numbers corelate very high for developing PD after RALP, but I still always wonder what the real number is. I wonder if it isn't a lot higher then what is being reported. I still believe that Uro's and surgeons are still not discussing PD as a possible side effect with their trusting heart broken patiences for fear they may not go through with the RALP. I don't understand why that is never listed as a possible side effect.That's just my thoughts on that subject.

Has anyone on this site ever gone through a successful treatment for PD?  I read about the the Xiaflex shots but never read about anyone getting a good solid recovery from this PD mess. I read about the horrors some men have gone through to trying to recover from the PD. It's a little scary. If you go to the PD forums the cures and experiences seem to be all over the place so that's why I'm posting here with men that have been through the RALP/ PD scenario. Any words from anyone on this PD thing? Any help out there?

Thanks Al   

 

Posted 4/12/2015 4:52 PM (GMT 0)
I agree that it's under-reported -- it has to be because it's not routinely measured. Peyronie's, climacturia, and penile shrinkage are not included in any of the sexual function questionnaires that Uros ask their patients to fill out after RP. And what doesn't get measured doesn't get attention.

This 2013 reference has a discussion of all the therapies for it; it discusses collagenase (which is what Xiaflex is).:

Current and emerging treatment options for Peyronie’s disease

- Allen
Posted 4/12/2015 6:02 PM (GMT 0)
What about penile prosthesis? I've heard a couple of guys mentioning that it solved their PD problems. Pretty extreme treatment, but may also have some other useful benefits for some. (EDIT: I see that is mentioned in Allen's link: "While this approach to surgery offers very good outcomes, there are also still risks that need to be fully discussed with the patient. These include infection, device malfunction, repeat operation, and erosion complications.")

I also believe it is seldom mentioned by surgeons who are recommending surgery. Certainly was not mentioned to me, neither was shrinkage, and both seem to be significant problems for more than a few folks. You can rest assured that if either were mentioned up front as possible SEs, that the number of men searching for non-surgical solutions would increase.

All I was warned about on this subject was that I would probably have ED that would not respond to pills, but if so no problem I could just inject. Yeah, right, no problem. rolleyes

Post Edited (BillyBob@388) : 4/12/2015 12:05:54 PM (GMT-6)

Posted 4/12/2015 6:53 PM (GMT 0)
Are you thinking that PD is associated with RALP directly, or that it is associated with Trimix injections necessitated by RRALP SE's? (Which was my impression)
Posted 4/12/2015 6:59 PM (GMT 0)

Pratoman said...
Are you thinking that PD is associated with RALP directly, or that it is associated with Trimix injections necessitated by RRALP SE's? (Which was my impression)

That was also my impression.
Posted 4/12/2015 7:12 PM (GMT 0)
It's a known SE of RP. In one study, it affected 16%. It sounds like you guys were not informed either. It may be less of a problem with Tewari's technique where he monitors penile oxygenation throughout the surgery, perhaps preventing cell death and fibrosis that might be responsible for it. Prat - if you see him again, ask him to do a comparative study on Peyronie's and penile shortening.

Peyronie's Disease Following Radical Prostatectomy: Incidence and Predictors

- Allen
Posted 4/12/2015 9:42 PM (GMT 0)
Allen, there seem to be two conflicting statements in the abstract of that study...

First, in the 'Results" section it says "
but post-op erectile function was not a predictor of PD development. "

Then in the conclusion section it says....  Men presenting with sexual dysfunction after RP have higher PD incidence then the general population.

I actually meant to ask Tewari about this and forgot. I will next time. I have noticed a very slight curvature to the left. No bending or anything even alarming. It might be normal, might have been there before surgery, or might be my imagination, since i am known to get nervous over nothing.
Posted 4/12/2015 11:27 PM (GMT 0)
All the men in the study had some kind of sexual dysfunction although not necessarily erectile dysfunction. In fact, if they had complete erectile dysfunction they might not know if they had Peyronie's.
Posted 4/13/2015 10:23 AM (GMT 0)
Prato, from what I've read, most men have a slight amount of curvature to one side. One thing I saw correlated it to the man's dominant hand. I would think the appearance of PD after RALP would have a lot of variables involved, simply because there are so many variables in surgical techniques as well as surgical extent.
Posted 4/13/2015 5:00 PM (GMT 0)
In a recent literature survey, researchers pointed out the under-reported side effects of RP - climacturia, penile shortening, and orgasmic dysfunctions. They left off Peyronie's.

Neglected Side Effects After Radical Prostatectomy: A Systematic Review

In the following commentary about it, the writer suggests a simple hand-out that ought to be given to men considering an RP. This type of thing is always done for prescription meds. I don't see why it shouldn't be done.

Commentary

- Allen
Posted 4/13/2015 10:24 PM (GMT 0)
I think some of the handouts I had included discussions of some of the less common side effects. I'll go back through my folder and see if I can find it.
Posted 4/16/2015 6:13 AM (GMT 0)
I've developed some recent symptoms of PD, but they seem to be relatively mild. Was due to see my ED specialist, so I'm going Monday and will provide report. Won't go through while story regarding injections, but shirt story is I had ED right at 2 yrs post RP. I started trimix very late (around a year out), had limited success at first, and then got it going fine. In total, I'd estimate only around 20 injections total, so certainly not overuse. I have just recovered to point I get usable erections with Viagra only (just in past several weeks), and about the same time, I notice 2 small nodules under the skin if penis. My Johnson now has curvature, and although mild, I'd say it's approaching the 30 degree point that people say constitutes PD. I have zero pain or other symptoms.

Needless to say, after cancer, ED for 2 yrs., problems injecting, marital problems (that have improved), and now useable erections that freak me out, I'm getting pretty concerned. If officially diagnosed, my real hope is that it stays mild and stabilizes. If all I have to deal with is a visually crooked unit, I'll be fine. If I'm in for a whole new round of concerns, insecurity and marital stress, and god forbid any surgery, man, ill be worn out. Just when it gets working and having infrequent, but at least some sex, I'll really have to buck up emotionally. Through all this I've maintained good length and thought I was well on road to recovery. I've been taking L-cutelyne and co q10 supplements which are supposed to help.

We'll see what doc says Monday and I'll report back. I know my struggles are nothing compared to recurrence and all our forum members are going through on relative basis, but the perfect storm if ED, marital problems, trimix problems and now this, have taken their toll. I'm pretty positive. We'll see how it goes. Anyone have experience with tomoxifen or other treatments of PD?
✚ New Topic ✚ Reply