When younger men get Peyronies Disease it is particularly poignant and unfortunate. Here is feedback I received from one young man with our disease:
comments = Hi, please e-mail me if you are still updating this website. I would love to help you out in any way possible, update the website, write to magazines, tv, shows, etc. Whatever it takes. I am 25 years old with this disease and have never had sex. When my symptoms began I had been dating my girlfriend for 3 months. I had finally found someone that I connected with not only physically but emotionally as well. I found myself waking up every morning and pinching myself because I was so happy I felt like I was in a dream. Now, every morning when I wake up I feel as if I am in a nightmare! I am on Trental and the pain continues to intensify. My girlfriend has done as much research as me on this condition and says she will stand by me no matter what because she loves me. But the strain is tremendous. I refuse to believe that I will never have sex and will hurt forever. Let me know!
Are There Other Uses For A Penis? - In a prior edition of this site I wrote about Peyronies Disease in Teenagers. This article was based on a 2011 International Society for Sexual Medicine research article. When re-reading the article something struck me as odd. This report noted that penile trauma was a risk factor for Peyronies. Fifty percent (50%) of this penile trauma occurred during sexual intercourse or masturbation. Can someone tell me what other penile trauma events would occur that would result Peyronies? It was not mentioned in the article.
Highly Recommended Source For All Health Related Stories - On Page 1 I recommended a website for their excellent review of health related stories. There are 2 news stories related specifically to Xiaflex. The reviews seem to indicate that Xiaflex's usefulness has been exaggerated and side effects are downplayed. Further, reporting that it is effective in treating Peyronies is premature. Remember, these are not pro or anti Xiaflex articles. They are simply commentaries on the reporting related to Xiaflex. If you are interested in these articles, go to healthnewsreview.org
What Does a Made (Mafia) Guy Fear The Most? I was reading a so-so book on the New York Mafia - The Sinatra Club. In it, Bald Vinny, was a successful mobbed up Queens counterfeiter. He was introduced to a couple of hookers who found out that he had a very important secret. When one of his partners in crime found out about the secret and told him that he knew what it was, Bald Vinny went "nuts" and did everything he could to keep it a secret. You guessed it, Peyronies Disease. No, the book didn't use the term, it just said he had a bent dick. What else could it be? Memo to Vinny - If you go to hookers they are going to find out about your dick and chances are they are not going to keep it a secret. Maybe you should have whacked them?
News From the World Meeting on Sexual Medicine - August 2012 held in Chicago, Illinois
This conference will be the source of many future articles, but due to my time limitations I can only write about one research report this time. Here is an interesting title of a research abstract written for the conference.
EGG (MASTURBATION DEVICE) AS A NEW PENILE REHABILITATION TOOL: A PILOT STUDY Yoshikazu, S1; : Sanjukai Hospital, Japan
I was unable to access this report, but based on the title study, I can only assume this device was at least somewhat successful in rehabilitating penile function.
What does this have to do with Peyronies Disease? When diagnosed with Peyronies, virtually all physicians will tell their patients, "that nothing can be done during the active phase - approximately 18 months, but keep sexually active." As way of introduction, I am repeating a portion of a prior article I wrote on this website.
Frozen Shoulder (adhesive capsulitis) and what it maybe able to tell us about what to do and what to avoid
Frozen shoulder and PD are disorders that appear to have much in common
Both are connective tissue disorders resulting from an injury, leading to inflammation, scarring and tissue shrinkage. In the case of frozen shoulder, it results in shrinkage of the capsule that surrounds the normal shoulder joint
Both occur more frequently in men with diabetes
It is believed that both have an autoimmune component
Xiaflex is being tested as a PD treatment and it is being considered for testing on frozen shoulder
Stretching exercises are usually recommended for patients with a frozen shoulder. They exercises invariably involve stretching the injured arm towards the outward, non deformed position.
What does this have to do with our disorder? Physicians who treat men with PD will recommend that they remain sexually active. What exactly does this mean? In contrast to stretching outward towards the non-deformed position as with a frozen shoulder, during actual vaginal intercourse, the penis is tensed and via thrusting, significant pressure is applied against the penis towards the direction of the deformed position. Particularly during the active phase of the disease this may result in further injury to the penis. When I first contracted this disease, I remained sexually active and engaged in vigorous vaginal intercourse and my condition worsened considerably. Did this pressure account for the worsening of my condition? I don’t really know, but logic and common sense would not rule out this explanation. Let me know what you think.
Now, this Japanese physician has (probably) concluded that this EGG device is useful for penile rehabilitation. I would conclude that masturbation during the active phase of Peyronies Disease will have a positive effect. At the very least it will keep blood flowing to the penis. Here is a link to a you tube video explaining how to use this device http://youtu.be/2-0-Z-VJ3n4 My first impression was that this was some exotic, foreign device. I was wrong. It is sold all over the U.S. Here is the link to buying it online from Amazon. Notice the favorable reviews.
If any readers have comments about my theory or have used the EGG device, please give me some feedback.
WHAT YOU CAN DO (I) - On a fairly regular basis, I get feedback from readers who have Peyronies and say they will do whatever it takes to get us closer to a cure for our disease. These men are emphatic that they are ready to do whatever it takes. O.K. Here is something you can do. Is there anyone out there ready to take this on. A change in the definition of erectile dysfunction would be of enormous help to us. Take my word, I work in the medical insurance field and definitions are of extreme importance. If we could expand the definition of erectile dysfunction from
the persistent inability to achieve or maintain penile erection sufficient for satisfactory sexual intercourse
Or the inability to engage in satisfactory sexual intercourse due to penile deformity
If there anyone out there willing to do some research and find and then write to organizations that are responsible for generally accepted definitions of medical conditions to accomplish this common sense and needed definition change?
WHAT YOU CAN DO (II) - A young man with Peyronies Disease wrote me and made a number of suggestions for advancing research for an effective treatment for our disease. He is obviously very intelligent and knows more about fund raising that I do. This writer suggested a website by the name of Kickstarter. After doing some research, I found out that this site helps to raise funds for a number of worthwhile causes and for profit areas. Do anyone to volunteer to work on a Kickstarter project for a Peyronies Disease project. Just thinking off the top of my head, two projects that would be of interest would be a relatively inexpensive VED specifically geared toward those suffering from Peyronies. Another thought off the top of my head would be an more effective penis stretching device, especially one that could be worn during sleep. To my readers - any suggestions, comments or volunteers?
Here is a very recent and well written article about the plight of men with Peyronies Disease in the United Kingdom. It is one of the few article that is sympathetic to men with this disease. Does not contain any jokes or snickering.
Recent Article Has Breaking News - Not Really - Confirms What I Have Been Saying For Years. Prostate Cancer treatment associated with Peyronies Disease.
Newly published article in the Journal of Sexual Medicine (03/2013). Penile deformities associated with prostate cancer treatment; sexual dysfunction and Peyronies. They share a similar pathology i.e., fibrotic changes of the penis leading to structural alteration and ultimate end organ failure. Men are not being informed of risks associated with prostate cancer treatment and this topic is under researched.
Drs note that sexual function is important to men. Really, what else is new!