NEWS IN BRIEF
WHY I WRITE THIS WEBSITE - About once a month I get an
email from a reader offering a small sum of money in
appreciation for the information he has gotten from this
site. Thanks, but no thanks. As strange as it may sound,
one of the primary benefits I receive from writing this site is
that it makes me feel that I have some control over my
Peyronies Disease. Also, I appreciate it when men write and
tell me this is the only site where they can obtain
unbiased information. Of course, if you have a few million
to fund a clinical drug trial or the development of a new
treatment product don't hesitate to contact me.
On the other hand, the embarrassing nature of disease and
men's hesitancy to talk about it presents it own problems.
In a previous edition of this site I created a comment box.
Personally, I usually find this feature one of the most
interesting aspects of most websites. The response to the
comment box was exactly ZERO comments. Will try it again
on this current edition and lets see what happens. If you
want to submit a comment and be absolutely sure of
privacy send it from a public computer such as a library.
Note that the majority of emails I receive are already sent
anonymously from public computers as men are terrified as
being identified as having a dick problem.
Other readers have complained that this is a difficult site to
understand and navigate. Part of it is the complex nature of
the medical articles I am reviewing. Also, I am not a web
designer. If you have a problem with this site and want to
write me that is fine, but be specific about the nature of the
Another issue that I want to address is that some men write
me for advice, but it is obvious that have not read any of
the articles that pertain to their situation and what type of
treatment they are seeking. There is a SEARCH feature on
every page and it works quite well. Inquiries concerning
Xiaflex are the most common topic of emails. By typing
XIAFLEX in the search box you will be able to pull up prior
and very detailed articles.
It is very gratifying when I receive a complimentary email or
even one where a reader is sincerely relaying his story or
trying to give me advice. Here are some recent examples of
emails I have received from readers.
Stumbled on your site. Best I have seen to explain various
Best site I have found for our problem. I must make a move
soon, just not sure which way to go. Keep up the good work
First, I want to thank you very much for linking to my website,
MyPeyronies.com. I do really appreciate it as I know you only
link to resources you feel trustworthy, thank you.
I was reading about your experience of Xiaflex injections. It is
very interesting and informative read (my wife read it too and it
even made her cringe). It is so valuable to get to hear the
patients' side, it is really great of you to share your story so
I'm sorry to hear about your bad reaction and lack of result.
Your story clearly demonstrates the importance of the injection
technique and that an experienced health professional perform
I have just updated my article about Xiaflex (after the FDA delay)
and included reference and link to your story as I feel it is a must
read for everyone interested in the use of Xiaflex to treat
Peyronie's patients. This is the link if you want to have a look.
I would like to make your story even more visible on my website
so I was wondering if you would be willing to share your story
with My Peyronie's readers? I have a section called Share Your
Story but men seem to be remarkable reluctant to share their
story publicly even though they can do so anonymously. I do
receive fair share of e-mails where men are very open but still :-o
comments = In your section, you stated that you lost your
fiancee due to this disease and no woman will stay with a man
with a non-functioning penis" (paraphrased) I am a 53
year old mrried male. I have been stricken with peyronies. I am
disappointed, but not embarrassed as the cause(s) are
hypothetical and basically unknown. It is beliebved that damage
during intercourse or hereditary factors play a role. I include
this since you stated that you were stricken for no apparent
reason;. WHat I really wish to tell you is that peyronies doesnt
make your penis non-functional in most cases. It will curve it, it
will make it smaller, it may cayuse a deterioration in tissue that
weakens your penis' tactile strength for penetration, but it rarely
makes it non-functional. This means there are many options for
sexual activity. Hand manipulation, oral and attempting
penetration tp find out if it can be accomplished. Also, the pain
goes a!way, at which point, the curved penis can be pulled
straight with little or no pain in order to attempt penetration.
This can also be done while the pain exists. I know because I did
it. It simply means that there will be a degree of pain along with
the pleasures of sexual fulfillment. Again, the pain eventually
dissipates, even if the condition continues to exist. You also
failed to mention the fact that, in some cases, peyronies will
actually cure itself within two years or less of being afflicted.
This isn't always the case, but it has been known to happen.
However, in curing itself, the body does not replace or repair
destroyed or damaged penile tissue.
My wife of 32 years is having an affair and the fact that we
haven't had "real" sex in over 2 years was probably
a key factor. Our marriage had other problems as well and I will
probably be filling for divorce. I have PD, ED, and had prostrate
cancer. I would appreciate an update on any new treatments.
Thank you for letting me vent...it is somewhat theraptic.
Good info, hard to filter through it all(layout/design). I of course
have pd or I wouldn't be reading all the info. Not severe but still
prevalent. I am not a web designer but I do have a degree in
CIS-networking so I do have some skills. I also teach vocational
classes in computer technology. I am the father of 5, 4 of them
are young so time is busy. If I can be of any assistance let me
I have got perhaps some form of PD and therefore I am involved
in the topic PD. My concern is, if you could please create an
article/ hint on your website, that there is a petition ongoing
until 9 of may, which is about PD and aims at focussing the
government to spend more money in research etc.
Recognize Peyronie's Disease; A Quality of life condition
"NOT" a lifestyle choice. | We the People: Your Voice
in Our Government http://wh.gov/MGLP
hi I have PD on the Box for levitra it says do not use if you have
Peyronies disease what is that all about I thought it would help??
I'm 20 and have had the disease for 4 years.
Needless to say, I've studied every research paper that has ever
come out on the subject out of desperation.
There is nothing we can do short of hiring our own non-biased
research team to find a cure.
I have a great friend who suffer from Peyronie's disease and I
am helping him research and find out everything there is to
know about Peyronie's Disease. Neither he or I have ever heard
of this condition. What is frustrating is the lack of any cures or
successful solutions. So, I really do appreciate your website,
because of your dedication to get the word out.
Sir, it has been very difficult to keep up with research in Stem
Cell/Peyronnies until I discovered your site today . Very good.
Best regards, keep up the good work, (Medical GP and sufferer ).
I could go on and on with the emails. Each man in a
desperate situation hoping for a cure.