Peyronies Forum Directory of Important Links

None of these Peyronies forum groups offer expert or practical information about Peyronie's disease natural treatment. Be careful in listening to the non-expert and inexperienced ideas that are sometimes offered in these sites about natural health care. Some well-meaning person might tell you about his personal experience with some therapy – like Neprinol or vitamin E – and convince you he knows more than he actually does. Be careful where you pick up your natural treatment information because a lot of it is not correct and could harm your.
Peyronies forum to expand communication
Peyronies Forum Directory expresses the unique philosophy of natural care for Peyronie’s disease. For this reason it is unlike any other you will find on the Internet, see Peyronie's disease treatment. This list of other sites is offered to improve communication among men with Peyronies desease, not just with drugs and surgery.
To read success stories, click on Peyronie's disease treatment testimonials.
Warning before linking to any Peyronies forum, be aware:
1. Many Peyronies forum sites eventually are abandoned. Why?? The medical profession has convinced the average man with Peyronie's disease that there is nothing that can be done for him. As a result he soon quits looking for help and looking for information. The average Peyronie's forum is full of the same dull and pointless information about Peyronie's disease. From one PD site to another the reader sees the same limited and negative information repeated from site to site that he soon tires of reading it. People eventually stop using these forums, and each one dies out after a while.
2. Many Peyronies forum sites have very few entries or questions because there is so little genuine information that can be used to help someone by offering intelligent and tested Peyronie's treatment information and opinions.
3. Posts on the average Peyronies disease forum are often of a negative nature. Meaning, most dwell heavily on what doesn't work, or what is wrong with this or that kind of treatment. Very few men have found help with their Peyronie's disease that little positive informaiton is ever presented. With this negative and tiring repetition of the same information, few people come back and sites just dry up after a while.
4. On most Peyronies forums if a positive comment is made about an Alternative Medicine therapy that has helped someone, there is a strong and very vocal group of a few men who will shout them down or suppress this information. Men with something positive to report about improving their PD can be called liars, stupid, or "shills.' Very often the only thinking or ideas that are welcome is of a medical nature – and the medical thoughts and ideas allowed by this smaller group is that nothing helps Peyronie's disease. For this reason it is important to understand that many of these Peyronies forums are very one-sided with a strong medical slant.
* http://peyronies-disease-help.com/category/blog/
* http://www.peyronies.org/forum
* http://www.biospecifics.com/forum/index2.html
* http://www.inspire.com/groups/association-of-peyronies-disease-advocates/
* http://groups.yahoo.com/group/peyroniesdiseasesupportgroup/
* http://health.groups.yahoo.com/group/men_peyronies/
* http://health.groups.yahoo.com/group/Peyronies_peckers/
* http://health.groups.yahoo.com/group/PeyroniesDisease2/
* http://health.groups.yahoo.com/group/PeyronniesDiseaseHelp/
* http://health.groups.yahoo.com/group/peyronies-chordee/
* http://health.groups.yahoo.com/group/international_peyronie/
* http://www.askphysicians.com/cgi-local/forums.cgi?display=thread&forum=34&id=4478
* http://forums.menshealth.com/thread.jspa?threadID=168290&messageID=2769105
The Peyronies Forum Directory does not blanketly endorse or necessarily agree with these discussion groups. PDI has no control over content or intention of any forum, and cannot be held responsible for the accuracy or validity of any contribution made by members of these groups.
Commentary: Standard medical "wait-and-see treatment" of Peyronie's disease, click Peyronie's Disease and Man Whose House is on Fire.
Did the Peyronies Forum Directory miss any?
If you know of a forum or discussion group that is not listed here, please send the URL address of that group for inclusion, to us at info@peyronies-disease-help.com. Peyronie’s disease is a complex and baffling condition. Because of the variable progression of the disease and inconsistency of response to treatment, there is much misunderstanding about it by the men who must live with this problem.
There is much controversy about Peyronie's disease treatment and sometimes there is even argument. It’s cause is unknown, and there is no accepted medical treatment for it at this time. Because there are many theories and few hard facts, there is much confusion about cause, progression, treatment and resolution of this terrible heath problem. For your mental and physical well-being, please contact a Peyronie's forum to educate and help yourself – but be aware of their limitations.
In my opinion, all carriers of the Peyronie’s disease have antibodies to Chlamydiae, or current infection. Being caused by the enzyme “proteinase inhibitor” that is denatured by heat, either by the friction of the penis with her vagina, or hand, or even by a swelling or fever, this applies to other fibrosis, too. And I think closing this enzyme Ms disappears (Michaelis equation).
Greetings Mario,
Thank you for presenting your ideas offering an alternative cause of Peyronie’s disease. You take me back many years to college biochemistry studying Michaelis–Menten enzyme kinetics. I will have to go back and refresh my thinking in that regard to see how this relates.
My first thought is, the heat that you speculate denatures the proteinase inhibitor generated during intercourse would be so minimal, if not essentially non-existent, in almost all instances of intercourse. Typically, with usual vaginal lubricating secretions the amount of friction is reduced so that intercourse can proceed without pain or heat as an irritant. If what you speculate took place during intercourse then all men would have Peyronie’s disease. Any minimal heat generated at the surface during intercourse, or masturbation, is dissipated via capillary blood flow, and not available for conduction to the deeper layer of the Tunica Albuginea. Lastly, any minimal heat generated during intercourse, or masturbation, cannot be compared to the 103-104 degree febrile heat of a local or systemic disease.
The second thought, there is no statistical correlation of the occurrence of Peyronie’s disease and chlamydia, a sexually transmitted disease. Rarely during the hundreds of communications I conduct each month with men who have Peyronie’s disease that any one will off-handedly report experiencing even one of the common chlamydia symptoms (penis discharge, burning sensation while urinating, itching or redness at the urethral opening or pain/swelling of the scrotum or testicles). In my opinion, absence of these common chlamydia symptoms in my Peyronie’s disease population significantly weakens your theory and possibly disproves it.
Thank you again for your interest in Peyronie’s disease and sharing your interesting thoughts. TRH
Doutor Herazy. Quando eu descobri que possuía infecção por clamídia, tomei um antibiótico e 50% da fibrose sumiu no dia seguinte, foi por isso que comecei a pesquisar. Depois que o computador facilitou a comunicação eu busquei pessoas que tinham o Peyronie e apenas três, sen do duas delas já tinham o exame de anti corpos por terem a infecção no pulmão e já tratadas, um outro fez a pesquisa e deu também positivo, só que não consegui outras pessoas dispostas a realizar a pesquisa. Com estes três eu firmei a minha teoria. Eu tenho aqui um capitulo de um livro de microbiologia que indica como resultado final da infecção a fibrose. Sómente acontece a fibrose nas pessoas que são portadoras da enzima “proteinase” , nas pessoas que não possuem não acontece nada. Inclusive dois elementos que fecham esta enzima são “periodato de potássio” e outra a “lecitinase” , sendo que o periodato é altamente toxico, e a lecitinase produto de bactérias mas poderia atuar como remédio, e nos casos de desaparecimento espontâneo da fibrose, pode ter sido causado por uma simples infecção com S. Aureus. (hipótese)
Dr. Herazy. When I found out I had chlamydia, took an antibiotic and 50% of the Peyronie’s disease fibrosis disappeared the next day, that’s why I started researching. After the computer has facilitated the communication I sought people who had the Peyronie’s disease and only three of the two of them had the anti bodies test for having lung infection and already dealt with, another did the research and also gave positive, I just couldn’t other people willing to perform the search. With these three I have executed my theory. I have here a chapter of a book of Microbiology that indicates how outcome of infection to fibrosis. Only happens in people with fibrosis of the enzyme “proteinase inhibitor”, in people who do not have nothing happens. Including two closing elements this enzyme are “potassium periodate” and another the “lecithinase”, is highly toxic, periodate and product but could bacteria lecithinase act as medicine, and in cases of spontaneous disappearance of fibrosis, may have been caused by a simple infection with s. Aureus. (chance)
I am new to this site so bare with me. I was wondering something. I have Peyronie’s disease and have had two seperate penile fractures. It seemed to me that the force that caused the fractures just was not that strong. Does Peyronie’s disease make it easier to get penile fractures?
Greetings Ryan,
Interesting Peyronie’s disease question, thanks.
A diamond is the strongest natural material on earth. Yet, someone with a small hammer and sharp chisel can gently tap on it just the right way and split it. Sometimes a small force delivered at just the correct angle and in just the right way, can surprise you. Something similar can happen in Peyronie’s disease. The tunica albuginea is a strong layer of tissue just under the skin of the penis that can usually sustain a lot of force and trauma. However, sometimes even small trauma can damage it. Injury of the penis causes inflammation to occur and sometimes, but not always, Peyronie’s disease occurs. In about 50% of cases when the tunica albuginea is injured and it looks like there is scar formation developing (the plaque stage of PD), the body will naturally heal the area of injury and Peyronie’s disease is avoided completely. This natural recovery from Peyronie’s disease is the reason that you should be encouraged that the natural Alt Med treatment of Peyronie’s disease is possible, hence this is the reason that PDI has this website. This website is all about helping your body do several things to recover from Peyronie’s disease like half of the men whose PD goes away on its own.
You say you have had two penile fractures. This suggests to me that the trauma or injury involved could not have been too small. It takes a lot to tear or rupture internal penile tissues to the point that it is called a penile fracture. Many cases of Peyronie’s disease start after penile fracture because of the degree and extent of injury involved. You asked, “Does Peyronie’s disease make it easier to get penile fracture?” Actually, the reality is reversed. A penile fracture makes it easier to get Peyronie’s disease. The injury you had that fractured the penis tissue led to your PD.
But, interestingly enough, now that you have Peyronie’s disease it is actually easier for you to re-injure your penis and perhaps sustain another facture, worsening your PD. Peyronie’s disease almost always causes two changes that can lead to further injury of the penis: 1. Some degree of penile distortion (curvature, sharp bending, hourglass or bottle neck deformity, or a combination of these) that results in a mechanical weakness of the normally straight erection. The distortion is a point of weakness that will allow more bending and sudden stretching to occur if a man is not careful. 2. Erectile dysfunction or reduced rigidity of erection; a softer erection can bend easier than a normally rigid erection. Put these two situations (distortion and softness) together and you are asking for trouble during sex. Many men fail to understand their vulnerability and make their Peyronie’s disease worse with careless and aggressive sex. Be careful.
Spend some time learning how to use natural Alt Med therapy to improve your ability to heal Peyronie’s disease like the lucky 50% who cure their own PD. TRH
Hi Dr. Herazy, I am new to this. I left a comment yesterday and do not see a response. The comments that I saw yesterday are all gone. I’m just wondering if I am missing something?
Greetings again Dr. Paul,
I responded immediately to you, and that comment is still posted here. You should find it immediately below this one.
Perhaps you are referring to a question that you emailed to me about your Peyronie’s disease? If so, I could resend my response. I that what you want? TRH
Yes please and thank you very much. I am just having a bit of trouble finding things on the website. I have continued to research the field. So far I have concluded that my best bet for now is the vitamin E and DSMO topicals which I have purchased through this site. I also purchased the Neprinol, but it is not immediately evident to me how much CoQ10 is in it. That would be helpful to know because I would like to make sure the amount of CoQ10 I take is adequate based on the study which used 300 mg. daily. Thank you again, Howard
Greeting Dr. Howard,
I will resend my Peyronie’s disease emails to you once I reply to your query.
Most vitamin companies attempt to keep as much information about their formulations private, so as to retain a competitive business advantage. This way no other company can accurately copy their products. This is different than in drug reporting in which information about ingredients is complete. Even the exact contents of enzymes, which are the primary ingredient of a product like Neprinol, are not listed.
As an aside comment about what you have outlined for your current treatment strategy, using just Neprinol with DMSO and vitamin E does not constitute a well-rounded treatment plan. It might work; you might be something to happen, but I doubt it. TRH
Endo Pharmaceuticals has discontinued Xiaflex for Peyronie’s disease.
Endo Pharmaceuticals has discontinued Xiaflex Collagenase Clostridium Histolyticum ) injection in Australia and Asia, and plans to do the same to whole Europe by the end of 2019. The American laboratory has decided to withdraw it for economic reasons. As a result, currently the drug is no longer available except in the US and Canada. Now the only treatment options for Peyronie’s disease are surgery or Penile Traction Device (alone or combined with PRP), in the rest of the world. See official letter about discontinuing Xiaflex treatment for Peyronie’s disease.
http://dupuytrenssociety.blogspot.com/2019/11/xiapex-to-be-discontinued.html
Greetings Dr. Newman,
Thank you for this important information regarding the discontinuance of Xiaflex for Peyronie’s disease treatment in a major part of the world. However, I suspect that there is more going on behind the scenes at Endo Pharmaceuticals than solely this particular reason.
The cost of Collagenase Clostridium Histolyticum injection for Peyronie’s disease is higher in the US than other parts of the world, it still brings profit to Endo Pharmaceuticals wherever it is sold. Selling Xiaflex in Europe at a lower profit does not affect the ability to sell it in America at a higher profit. Smaller or larger profit is still profit. That it is the way it has always been sold, by all drug companies, for all drugs. for this reason prescription drugs are available in all parts of the world because smaller or larger profit is still profit to the manufacturer.
Perhaps the decision to discontinue sale of Xiaflex outside the US might be related to the incidence of Xiaflex failure and complications. Perhaps the decision to stop sale of Xiaflex in a huge and viable market is a way to control this problem while it is being evaluated in the US. Frequent reports of post-Xiaflex failures and horrendous complications I receive suggests that something is wrong with the Xiaflex model for Peyronie’s disease treatment.
Many new drugs come to the marketplace with great hope and flourish. They are later removed quietly when bad results become apparent. Time will tell how large and frequent are these problems with Xiaflex.
In the meantime, I caution all people I communicate with to proceed cautiously with Xiaflex. Seek out the most highly skilled surgeon available; one with an abundance of experience using Xiaflex for Peyronie’s disease. Ask pointed questions about short- and long-term outcomes. Get educated; learn about the side effects and complications. Know that Peyronie’s disease recurrence still occurs after a Xiaflex procedure, often sooner and more aggressively than after simple surgery. Peyronie’s disease is a tenacious problem that upends standard treatment concepts. Unskilled, as well as outright sloppy, hasty, careless application of Xiaflex often leads to disaster.
Thank you, Dr. Newman, for keeping the PDI readership informed of this most important information about Peyronie’s disease treatment with Xiaflex. TRH