Confusion about the disease and its treatment

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jbvertigo

I think most of us are rather confused by Peyronies.  How do you get it?  What did I do wrong?  Was it preventable?  Is it curable?  I truly appreciate everyone on this forum but I feel like so much is just not being explained.  When I look at the site there must be a thousand different treatments.  Also, there appears to be a huge difference in what is happening to people.  Some guys complain of losing girth and size.  Others complain of the severe curve.  Some use Potaba and others use Pentox.  Some use vitamin E others don't.  There doesn't seem to be a definitive answer on the best treatment and or cure.  There is huge gaps of information.  I have had some people say that glucosimine was part of the problem, others said it plays no role.  Some say injury and others can't say what happened.  One person claimed that excessive masterbating caused the problem, others have said no way or we would all be bent.  The level of confusion is mind boggling.  My doctor has me on Pentox which upsets my stomach.  I don't know if I will have to be on that forever or a few months.  I am also on L-Arginine and Vitamin E.  Good idea or bad idea?  Nobody seems to know.  Some swear by VED but others say....be careful can hurt you even more.  Confused in America....jbvertigo

emasculated

My doctor is a specialist who researches Peyronie's for decades (with his doctoral students partly). He says it is not (just) an autoimmune disease, it is not definitely caused by an injury (plenty of patients don't remember injuries). The cause remains a mystery. There are plenty of theories, though nothing definite. Hence it occurs "idiopathically", though there are some known comorbidities like Diabetes, Dupruytens and probably some innate, possibly genetic predisposition to this type of connective tissue disorder.
One mystery is why mostly white men get this and much less blacks, asians etc.. I have read that blacks do have naturally lower Vitamin D levels. But they have a certain hormone with which their body basically uses vitamin D more efficiently. Since there seems to be a connection between low Vitamin D levels and Peyronie's this may go some way to explain the differences in susceptibility. But as I said it's all just speculation.
I would say that we should simply forget whatever the cause of this thing is. It's not worth the effort and may not even lead to an effective treatment. Let's just identify what the problem is and find an approach to counteract the fibrosis of Peyronie's and reverse the effects.
But the problem is that it is not an attractive field for research and there is no money specifically going into Peyronie's disease research (as opposed to many other diseases which are far less important in my opinion...). Just because it is not affecting our mortality in itself. Hence researchers can not earn any brownie points for "saving lives". Even though with Peyronie's I most of the time would rather be dead then alive, but that doesn't count.
All the medicines you have listed are merely off-label medications without much scientific backing. They were never approved as treatments since the studies are not there which would lead them to be approved, since no one gives a crap about Peyronie's. They are just experimental. So you have your pick which works best for you. Don't expect more than mild, short term improvement from any of them. I would start though with the ones with the best support behind them. Double blind, placebo controlled, _randomized_ studies. Pentox ranks highest in this category.
"Without health life is not life; it is only a state of languor and suffering - an image of death."

james1947

jbvertigo

Please read the forum rules!!!
Everyone gets on topic in "Introduce Yourself"
I am moving your topic to causes of Peyronies....

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

welshwales

I know where you are coming from, treatment for Peyronies Disease is a minefield. The one real known factor regarding treatment is that good bloodflow in the penis is important, for it aids the healing process. Moderate VED usage, pentox and pdh5 inhibitors are all known to improve the flow of blood through your penis, and are therefore considered first line treatments by good uros.

Regarding the girth and length loss, it's really a matter of how far along the path of the disease you are, and the severity of it. I've lost a lot of length and girth, and I also have ED thanks to this frustrating condition. That's mainly because I didn't know how to combat it, and I had a crappy uro. Thankfully I found this forum and sought better advice. So the earlier you combat it, the less likely you are of being affected by length/girth loss and ED.

Hope that helps. I'm sure one of the experts will be along and will enlighten you further.

johnmoses46

Treatment alternatives incorporate sexual advising, pharmaceuticals, outer vacuum gadgets, hormonal treatment, penile infusions, or intraurethral suppositories (see Impotence/Erectile Dysfunction for treatment choices). In exceedingly chose cases under the supervision of a urology expert in ED, blend treatment utilizing a few of these techniques together can be utilized. On the off chance that none of these treatments is palatable, penile embeds through medical procedure can be considered.

james1947

johnmoses46

This topic is 4 year old!
Can I ask you why you posted on it?
Do you have Peyronies?

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum