GENERAL COMMENTS & Questions - that won't fit under any of our other topics

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Skjaldborg

I am circumcised and I have often felt that too little skin was left behind, contributing to the slight downward curvature I had pre-Peyronie's (I have very slight dorsal curvature now instead of pointing down). The penile skin there has always felt very tight during an erection and it seemed that skin from my body/testicular/pelvic area stretched upward to compensate, leading to an astonishing amount of pubic hair creeping up the ol' shaft. Needless to say, I keep things trimmed for everyone's comfort.

I don't want to stray too far off topic here, but my life, from institutionalized genital mutilation at birth (circumcision) to childhood crotch injuries, from unruly pubescent erections to worrying about penis size, from fretting over sexual performance as a dating man to this damn disease 7 month ago, has been one long experience in penile trauma. Isn't being a man great! ;D

I'm 30 now and I just can't wait for what's in store for the prostate and testicles in the next 20 years! I used to worry about having to get the digital exam at 40, but compared to all the squeezing, yanking and stretching I've endured at the urologist, the digital exam is starting to sound like a trip to a petting zoo with puppies, unicorns and kittens.

Also, pandas.

-pardon the threadjack,

Skjald



ComeBacKid

Skjaldborg, You gave me a good laugh  :D

Your also right in that if your cut to tight, scrotum skin is pulled up onto the shaft, especially when cut tighter, this will keep your balls from hanging as long as an uncircumcised men.  The problem is if you have hair, that skin with hair is then pulled up onto your shaft for a hairy shaft, some men have complained of this. I think our society in the usa oversimplifies the penis and testicles, like a man just has to show up for sex... this can be quite misleading, women just need to show up for sex!

Comebackid

cowboyfood

I had a check-up with urologist Dr. Ritenour in Atlanta today.  My appointment was originally scheduled with his assistant, but he was sent to Iraq for a year and Dr. Ritenour did my check-up.

He explained that he sees hundreds of patients every year and almost always examines their penis.  He stated that he feels scar tissue in many men that had no idea the scar tissue was present.  

He also commented to me that he was "glad to finally meet me" because he was somewhat familiar with my treatment plan and knew that I started it relatively early on since my diagnosis.  He said that the VED, pentox, viagra, and supplements (l-arginine, ALC, D3, vit E) are excellent treatments.  According to him, many men do not start a treatment early or to this extent.

He is particular fond of prescribing low-dosages of viagra because of the benefit of encouraging erections and stretching.  He also likes the VED but he insists on a conservative approach (not to much stress or pressure).  

So, I'm about 10 months into this since the condition presented itself last December.  He stated that the scar had relatively very minor calcification compared to other Peyronies Disease patients.  Of course, I don't know if any conclusions can be drawn to show a relationship between starting treatment early and relatively minor tissue calcification.

I decided to go ahead and let him do an ultrasound on me in a couple of months.

Also, he is referring patients to our forum.  He stated he has visited our forum several times, but that he has not registered or placed his name into the list of doctors.  I told him that I and a couple of others had mentioned his practice on the forum.

CF
Currently:  L-Arginine (2g), Vit D3)

newguy

cowboyfood - Fantastic posts and equally fasntastic urologist by the description given. Inquisitive, up to speed with the most current treatments AND recommends that pateints visit the forum.

QuoteHe explained that he sees hundreds of patients every year and almost always examines their penis.  He stated that he feels scar tissue in many men that had no idea the scar tissue was present.

Interesting, and it doesn't surprise me at all...

Did he comment of whether he'd seen much positive response from the current treatment options, such as the ones you take?

skunkworks

Quote from: cowboyfood on October 15, 2009, 08:59:00 PM
He explained that he sees hundreds of patients every year and almost always examines their penis.  He stated that he feels scar tissue in many men that had no idea the scar tissue was present.  

Why is this notable? Is it because it suggests that all Peyronie's is caused by trauma, but often men completely miss the injury actually happening?  
This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

LWillisjr

Quote from: skunkworks on October 15, 2009, 10:08:37 PM
Why is this notable? Is it because it suggests that all Peyronie's is caused by trauma, but often men completely miss the injury actually happening?

That's a theory.  I know I couldn't feel mine until my first uro visit. And he showed me how and what to fell for.  
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

cowboyfood

Quote from: lwillisjr on October 16, 2009, 12:42:18 PM
Quote from: skunkworks on October 15, 2009, 10:08:37 PM
Why is this notable? Is it because it suggests that all Peyronie's is caused by trauma, but often men completely miss the injury actually happening?

That's a theory.  I know I couldn't feel mine until my first uro visit. And he showed me how and what to fell for.

I didn't say that "men who do not realize they have scar tissue" did not have trauma.  He was suggesting that trauma may occur to the penis as a result of an unremarkable event.  For example, if an erect penis got crushed by a baseball bat causing the penis to basically break resulting in the formation of scar tissue, then this is a remarkable event remembered by all men.  However, different types of pressure on the penis may also cause the formation of scar tissue.

In my case, my dent seems to be at the exact area of the penis where I would put the most pressure on it with my fingers when I masturbated.  We didn't conclude that masturbation caused the scar, but acknowledged that it is a pressure point.  

Otherwise, he acknowledged that there is no generally accepted treatment; he respects Dr. Levine's pentox recommendation while accepting the fact that no conclusive research exists establishing its effectiveness.  But, he believes that pentox is a very safe drug to use and is interested in seeing results from its use.

He seems to be a big endorser of getting erections, blood flow in the penis.

So,  since I know I will be seeing him in either December or the first part of January and the fact that he is a relatively young and interested urologist, I'd like others to suggest some questions I can pose to him.  I will come up with some of my own.  For example, what success has he seen in treating Peyronies Disease.

CF
Currently:  L-Arginine (2g), Vit D3)

despise

Grunt - I just wanted to say I have the utmost respect for you =] You are a inspiration to me just like most of all the guys in this forum are. You kept strong and are dealing with your issues as smartly and calmly as you can. I'm really glad you have a gf to help you along with all of this. I know how helpful a understanding gf can be =D Hang in there Grunt! I'm sure with these guys help and your determination things will be looking up for ya.

snowydreams

Hello
I have had Peyronie's for about 3 years and have been experiencing a strange symptom in the last few weeks.  When I sneeze, it radiates into the pelvis, pubis, and penis causing discomfort in those areas and pelvic spasm.  The force of my sneezes are very strong and I have history of pelvic pain and prostatitis which causes my pelvic area to be sensitive.  I have been to several urologists, but they are not sure what is causing this symptom.  I am worried that this symptom will worsen my Peyronie's due to the force of the sneezing.
Has anyone experienced this symptom and any advice on how to relieve this problem?

chiguy

When you sneeze, your abdominal muscles contract. If you have prostatitis, it may be pushing on your prostate, which in turn pushes on your genitals. I am not a medical professional, but this could be a loose explanation. What treatments are you currently pursuing for your peyronie's?

Lea

Hi, I wasn't sure where to place this post as it sort of touches on the under 35 topic aswell.

I'm 31 and so is my husband. We've been together since high school at the age of 16. My husband and I first shared our first intimate experience together just a few months short of our 18th birthdays. At that age I had not been with or seen any naked males below the belt line. So for as long as I've been with my husband I had thought nothing was wrong. It was just recently when doing some research and writing on this topic that I took interest and some of the symptoms caught my attention. For as long as I've known and been with my husband his penis has been verticle and bends from the base. It is so verticle that it hugs closely to his body. I don't know if he has ever experienced pain associated with this as it never has really occured to me to notice or pick up on any strange behaviour of avoiding sex. We have 3 boys our youngest being 1yr so intercouse hasn't seem to affect his ability to reproduce. But lately it has become awkward for me. I don't know how to approach the subject with my husband in fear of hurting his feelings. I did initially email to websites about Peyronie's disease with a suggestion to read but I don't think he did. I love my husband dearly and would stand by his side always. I am worried about how I should talk to him about it and the possible psychological aspects that some of you have experienced dealing with Peyronie's.

As a devoted wife I ask for advice about what if your partner approached you about this situation how would you feel? What way should I come across as loving and understanding as possible to my husband to approach this topic without him shying away from me or resenting me. I fear an impact on our relationship should I bring up the situation. I want to be honest to him as I don't know if just staying quiet would he disrespect me.

I've read through some posts and topics about what you guys are going through. I find it so unfair that some doctors turn a blind eye to this problem and put it into the too hard basket. I do hope there is some light at the end of the tunnel for all that suffer from Peyronie's and I endeavour one way or another to help my husband and find something that will hopefully bring back some kind of normalacy. Any advice is much appreciated.

Lea

Old Man

Lea:

Just read your post and thought that I would add my take on what you are saying. There is much information that you did not give that could influence what we might suggest for you to do. However, above all, you must be very careful in any approach you make to your husband. Some men have a very difficulty time just even talking about their private parts. Any discussion about that area should be a mutual agreement and not become a topic of disagreement.

Having said the above, you need to find some nice way to bring up the subject and get his opinion on his situation. If he has not had any change in the size, shape or erections over the years, he might have a condition known as congenital curvature. Also, some men's penises simply point straight up when erect, so that might be his normal erectile state. You should try to discuss his past history a bit more in detail to determine if he has a congenital curvature or if he is presenting symptoms of Peyronies Disease.

Lastly, he should consult a good qualified urologist experienced with Peyronies Disease to get a good diagnosis of the problem. There is a ton of information on this forum just about any phase of men's health problem that is available for the two of you. So, explore any and all boards which includes many sub topics and threads with several thousand posts.

If there is any way any of us can help, just let us know.

Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

Lea

Thanks for the info, I plan to find out as much information as I can before I start sprouting possibilities.
I guess one good thing is we've been reasonably open about talking about what each others likes and dislikes about sex.
But I know it could be a touchy subject if something isn't going right.
I know he becomes disappointed if do not climax with him. Which is possibly no fault of his.
I think just lately we've had to abandom the situation due to neither of us getting to where we want to be and just the awkwardness of the direction his penis lies. Perhaps we need to be more innovative as the norm is no longer working.

Is there anywhere I could find some info on congenital curvature on this website that perhaps states the differences between the two?

I'll be sure to take things extremely careful when discussing any background details.

Lea

Old Man

lea:

To get more information on the forum web site just type in congenital curvature in the search window in the right hand side of the pages. The home page has it also, any page that displays the little search window will work.

If you are saying that his curvature has occurred in the past few months or years, he may be presenting the typical symptoms of Peyronies Disease. Again, he needs to get checked for Peyronies Disease as soon as possible to make sure of the diagnosis. Early therapy for Peyronies Disease works best in the long run, so don't delay getting help.

Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

Tim468

A firm erection pointing due North is something many men wish they had. However, if it pulls up so tight to the abdomen that it is awkward to insert when erect, then it sounds like a bit of a problem.

It is not clear if this is a new issue or if you are just paying more attention. Certainly, most men have an "angle to the dangle"  ;) that affects the way their penis points when erect, but most erect penises can be forced to point a bit in other directions when erect. That should allow for other angles of entry during sex.

Weight gain (his or yours) can make some positions harder.

If grabbing him and pushing him "South" before entry doesn't work, or if it causes pain, then perhaps there is a problem, particularly if that is a new phenomenon.

Welcome to the forum, and I hope our direct approach to talking about these problems helps!!

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

hornman

I just thought I would report some other recent scarring I've got going on.  This past summer I got some very minor scratches on my arms and legs while working in the garden  They didn't heal like they did when I was younger. They turned bright red and now I am left with raised purpleish scars where the scratches were.  I had a recent physical and the doctor said I'm in good health.  I'm 52 yrs old. Seems odd.

George999

I have a similar problem.  Every little bump and scrape seems to leave a scar behind.  This NEVER happened before I developed Peyonie's.  I have not injured myself since starting LDN.  I am hoping that LDN will alleviate this nasty phenomenon.  I am convinced that this is being caused by the same underlying factors that are causing Peyronie's and my other weird problems.  - George

Quote from: hornman on December 21, 2009, 09:00:01 AM
I just thought I would report some other recent scarring I've got going on.  This past summer I got some very minor scratches on my arms and legs while working in the garden  They didn't heal like they did when I was younger. They turned bright red and now I am left with raised purpleish scars where the scratches were.  I had a recent physical and the doctor said I'm in good health.  I'm 52 yrs old. Seems odd.

Bart2

Hey,

This is a pretty basic question but I would like to get confirmation on what a dorsal curvature is vs. a ventral one? Dorsal means on top (Like our spine on our back vs our stomach), so does that mean it is an upwards curvature? It's interesting because if it is, it seems like from the studies that I have been reading (Penotx study from Iran, FastSize pilot study etc.) that a lot more people have dorsal curvatures. Anyways can someone confrim this? Thanks,

Bart

LWillisjr

bart15,

I don't have any confirmed data, but it is my understanding that the curvature is more often in the upwards direction.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

sebby

Hi there

Please help my boyfriend may have Peyronie's Disease,  he has a slightly bent penis (nothing major) and finds it hard to keep his erection, he gets one then it goes.

I was wondering if he did have it , is there a cure?  I have read you can have an operation.  Does this operation allow for normal erections to occur after the op and will it fix the slight bend?

Many thanks

Old Man

Sebby:

Sorry to hear that your BF might have a problem with Peyronies Disease. You have come to the right place to get some assistance with his case. You should just browse through all the boards listed on the home page. The home page for the forum opens as you log in.

There are many boards that list the many and varied topics and/or subject matters that you can browse through to learn all you can about Peyronies Disease, the whys and wherefores that you might interest you. Just open the board for a subject and search through the list that comes up then.

There is a myriad of subjects that pertain to the symptoms you list in your post. So, do some homework by searching out as many of the topics as you can to see what may apply in his case.

Let us know if there is any specific question you might have after reading up on the subject. We are here to help in any way, so feel free to ask any and all questions.

Regards, Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

Tim468

Hi Sebby.

Also his erection going away may be due to anxiety about how he looks. It is possible that this is simply a mild congenital curvature and he is nervous about how you will view it. Or, it could be a new painful problem with pain "turning off" the signals for erection and him really needing to get medication to get things turned around.

Although you could provide more information and thus get more help from us, it might be best to try the following (you may have already done this!):

Tell him that you are worried about him and love him and that you love his penis and sex with him (reassurance of this helps!)

Tell him that you want to see if there is any problem that he is worried about. Tell him that you found this site and suggest it might be helpful to him.

Hang in there.

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

BrooksBro

Until recently, I would rarely dream, or at least rarely remember them if I did.  I have been on the PAV cocktail for several months.  Three weeks ago, I started 50 mg topical testosterone gel daily.  Last week, I added 500 mg quercetin twice a day (breakfast & supper).  Now I am having vivid dreams nearly every night.  I don't know if I am just sleeping much deeper, or if this is some unreported side effect of some drug or supplement, or an interaction.  The only thing I have read is insomnia and stomach upset were common with trental, but I have not experienced them.  I have long been taking 25 mg benadryl at bedtime.  

The dreams are not unpleasant, just a very sudden change for me.

Has anyone else experienced something similar?


despise

I have very strange dreams every night, because of my Lexapro. You wouldn't happen to be taking any ssri's would you?

slowandsteady

Looks like testosterone can be involved in vivid dreams.

Old Man

Hey guys:

Just a note about the dreams you are having. Libido has a lot to do with getting dreams whether or not they are connected with sex. My experience over the years has been like this: the more I am involved in sexual activity, the less "wet dreams" I have and less sexual activity brings on more dreams. Some are rather weird. At times, I dream that my father and I are out on a date with only one woman together and we both have sex with her back to back with each other. This is very strange since he was very devoted my mother and as far as I know never strayed from the bedroom, etc.

He passed away when I was 17 years old way back in 1947, so it is somewhat weird that I would be having any dreams at all about him, much less having sexual activity in any way with him present. He was from the "old school" of sex education and was rather reserved about even discussing it with his sons.

Anyway, my point is, don't worry too much about dreams of any kind unless they become obsessive to the point of causing anxiety problems. At that point, one should get medical help.

Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

RichP

Hi all,

I'd be interested to chat in real time with any others with Peyronies Disease/ED who would like to. I've opened a chat room at chatzy. Apparently I can't post a link here so message me for the link to the room.

richp

Old Man

RichP:

Sorry, but we don't have a chat room on the Peyronies Disease forum. We use the private message form to talk to each other as we deem it more efficient overall. Links are not allowed to be posted as you say unless it directly relates to Peyronies. Suggest you go to the rules section of this forum and get familiar with the whys and wherefores of what we do here and what is expected of any and all members when they join.

Posts that are made should be directly related to the subject matter as listed in the various boards of the home page. You can open each board by clicking on its title. Once opened, there is a list of topics/threads that are available for posts pertaining to each subject matter. etc.

Welcome aboard if you can comply with our set of rules.

Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

Bnewcombe

Hi guys, I'm not new to the forum, but I forgot my password and had to sign in under a different name.

So tell me, has anyone heard of Peyronies affecting white blood cell count?. My count is consistently low, although only one-tenth below normal, and I read that abnormal scarring could be the cause. What do you all think about this?  

George999

Low white cell count can be associated with autoimmune processes in the body often manifesting as systemic inflammation, a perfect setting for Peyronie's.  But it can also be associated with any number of other issues.  - George

slowandsteady

Looking back over my tests I see that my WBC numbers have been borderline low, with the most recent at 4.3 10E3/mcl and lymphocytes at the higher end of the range at 41%. It will be interesting to see whether my Low Dose Naltrexone regime has changed anything.

BrooksBro

Interesting observation.  I checked my own for the last several years and the WBC ranged from 3.81 to 4.61.  I do not remember the doc ever commenting one way or the other on these values.

Quote from: slowandsteady on March 05, 2010, 05:20:53 PM
Looking back over my tests I see that my WBC numbers have been borderline low, with the most recent at 4.3 10E3/mcl

newguy

RichP - In my view it would be difficult to make real time chat work, as members tend to come online at a time that is convenient for them. Many men use this forum as a way to express their thoughts and feelings about peyronie's, so from a personal perspective I'm not sure that I would like to regurgitate that process.

Perhaps if you become a member of the community, you may eventually be able to talk to people on messenger programs should they feel the inclination to use that method of communication.

Thanks!

Old Man

RichP:

Another thought just occurred to me about the chat room. Most guys/gals that use a chat room also have web cam setups that allows for photos to be transmitted. This would allow for our privacy to be breached by showing photos of ourselves. I am not saying that any and all would have this capability, but overall it would allow any who had the capability to do so. The private message center on the forum allows for personal information to be exchanged so that only the sender and the receiver sees the information.

As stated before and in the post by newguy there is probably little chance there would b enough guys on line at the same time to allow for much activity, etc

Anyway, seems like it did not catch the eye of many guys.

Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

George999

I think that all of this is not surprising.  I think that low ranging white cell counts are closely tied to systemic inflammation.  And systemic inflammation, of course, is tied to all sorts of other nefarious things including cancer.  - George

BrooksBro

Quote from: George999 on March 06, 2010, 12:28:06 PM
 including cancer

I would have been OK if you would have omitted those last two words.   :-\

Old Man

Brooksbro:

Unfortunately, George is right about the WBC with cancer. Sad, but true. All of us who have had prostate cancer and survived it, know that the blood is a very vital part of beating the mess. The white and red must be in balance to achieve any success with most any malady.

Wish there were more research into cancer than there is, but the research money is just not there. The same could apply to Peyronies Disease if there were more money, etc. Cancer does get much more though.

Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

Tim468

I wish we had an area for posting recent additions to the literature (I get automatic updates from Ovid that send me any new abstract for search terms related to Peyronie's Disease).

Anyway, here are two new ones. The first looks at sonographic data to see if it has predictive abilities of any sort regarding progression of disease to "requiring surgery" (only calcification suggested that outcome). The second shows that at least some urologists are trying to clean up their act and argue for better multi-center trials instead of these absurd "I saw 18 patients and here is what happened" articles the Peyronie's literature is full of.

****************************
AU Breyer BN.  Shindel AW.  Huang YC.  Eisenberg ML.  Weiss DA.  Lue
 TF.  Smith JF.
FA Breyer, Benjamin N.  Shindel, Alan W.  Huang, Yun-Ching.
 Eisenberg, Michael L.  Weiss, Dana A.  Lue, Tom F.  Smith, James F.
IN Department of Urology, University of California San Francisco,
 California 94143-1695, USA.
TI Are sonographic characteristics associated with progression to
 surgery in men with Peyronie's disease?.
SO Journal of Urology.  183(4):1484-8, 2010 Apr.
AB PURPOSE: Traditionally, diagnosis and treatment plans for Peyronie's disease have been based on history and physical
 examination. Penile ultrasound provides rapid, anatomical information to establish disease severity, and to monitor progression and response to medical therapy. We determined the relationship between ultrasound characteristics and progression to surgical intervention in men with Peyronie's disease.
MATERIALS AND  METHODS: We conducted a retrospective cohort study of 518 patients with Peyronie's disease. Patients completed a Peyronie's disease specific questionnaire detailing medical history, health related behaviors and Peyronie's disease characteristics, and underwent sonographic evaluation of the penis. Measurements of subtunical calcifications, septal fibrosis, tunical thickening (tunica thickness greater than 2 mm) and intracavernous fibrosis were made. Progression to surgery was determined from the medical record.

RESULTS: In this cohort (mean patient age 53.8 years, range 20 to 78) 31% of patients had calcifications, 50% had tunical thickening, 20% had septal fibrosis and 15% had intracavernous fibrosis. Overall 25% of the cohort progressed to surgical intervention after an average followup of 1.25 years (range 0 to 7.6). Patients who underwent surgery were more likely to have subtunical calcifications present at the first clinic visit (OR 1.75, 95% CI 1.16-2.62). No other sonographic characteristics were associated with progression to surgery. After adjustment for age, marital status, degree of curvature, additional penile deformity, difficulty with penetration, ability to have intercourse and prior treatment for Peyronie's disease, calcifications were strongly associated with progression to surgery (OR 2.75, 95% CI 1.25-3.45).

CONCLUSIONS: In a large cohort of patients with Peyronie's disease the presence of sonographically detected sub-tunical calcifications during the initial office evaluation was independently associated with subsequent surgical intervention.

Copyright (c) 2010 American Urological Association
 Education and Research, Inc. Published by Elsevier Inc. All rights
 reserved.
PT Journal Article.  Research Support, Non-U.S. Gov't.

<2>
UI 20092447
AU Porst H.  Vardi Y.  Akkus E.  Melman A.  Park NC.  Seftel AD.
 Teloken C.  Wyllie M.
FA Porst, Hartmut.  Vardi, Yoram.  Akkus, Emre.  Melman, Arnold.
 Park, Nam Cheol.  Seftel, Allen D.  Teloken, Claudio.  Wyllie,
 Michael.
IN Porst20354@aol.com
TI Standards for clinical trials in male sexual dysfunctions.
 [Review] [145 refs]
SO Journal of Sexual Medicine.  7(1 Pt 2):414-44, 2010 Jan.
AB INTRODUCTION: Clinical trials in male sexual dysfunction (MSD) are expanding. Consequently, there is a need for consensus standards in this area.
AIM: To develop an evidence-based, state-of-the-art consensus report on standards for clinical trials in MSD.
METHODS: A literature review was performed examining clinical trials in erectile dysfunction (ED), premature ejaculation (PE), delayed/absent ejaculation, libido disorders/loss of desire, hypogonadism, and Peyronie's disease, focusing on publications published in the last 20 years. This manuscript represents the opinions of eight experts from seven countries developed in a consensus process. This document was presented for peer review and debate in a public forum and revisions were made based on recommendations of chairpersons to the International Consultation on Sexual Medicine.

MAIN OUTCOME MEASURE: Expert opinion was based on the grading of evidence-based medical literature, widespread internal committee discussion, public presentation, and debate.

RESULTS: According to experience and recent publications in dealing with clinical trials in sexual dysfunction, recommendations have been made for conducting trials in patients with ED, PE, delayed ejaculation, libido disorders, hypogonadism, and Peyronie's disease.

CONCLUSIONS: It is important that future clinical trials are conducted using standards upon which investigators can rely when reading manuscripts or conducting new trials in this field.
 [References: 145]
PT Journal Article.  Review.
52, Peyronies Disease for 30 years, upward curve and some new lesions.

Greatriver

Hi Folks:

My name is Larry Holcombe and I'm sure most of you don't know me. Hawk does as we are old friends and go back to the beginning of this site. I've been away for a good while. I spent a lot of time here in the beginning and I'm delighted to see that the site and forum is running better than ever. Hawk you've done a wonderful job my friend, you had the staying power and I didn't. My hat is off to you.

I'm going to look around a bit and see what is new in the way of treatments. Perhaps I'll post from time to time if I can say anything of value.

I wish all of you the best in your fight with this devastating and misunderstood disease.

Larry H

Note: Larry is back in under his old profile "Larry H"  Hawk

George999

Welcome back Larry!  I think I remember you from way back when.  You used to be really active around here.  Nice to see you back again!  - George

Old Man

Larry:

Hey Man, long time no hear from. Hope that things have turned out for the best in your adventure since we last were in contact with each other.

I am sure that you have had quite a plate full with all the things you had in mind during your move. Glad to see you back and in the saddle with us again.

Shoot us a PM sometime and bring us up to date during absence.

Best to you guy!  Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

Hawk

Larry,

A huge welcome!  It is great to have you back Larry.  You have always been a voice of influence and reason in the Peyronies Disease community and a great friend in addition.

Glad to see by the link in your profile (under Larry H) that you have been successful in accomplishing some long-term personal goals. ;) WAY TO GO LARRY !!!  http://www.larryholcombe.com/
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Briden


Greetings,

Digging around on the internet I have come across some interesting studies regarding the Smad protein family and their association with TGF-Beta.

Here is an example article I found: http://jasn.asnjournals.org/cgi/content/abstract/13/6/1464

From what I have read there seems to be a theory that by reducing Smad2 with an over expression of Smad7...this would result in a blocking of the fibrotic process.

Has this topic been covered here on the forum? Does anyone here understand Smad Proteins and care to share what they may know about this?

Thanks,
Briden

fubar

Does anyone know how people get away having their tool pierced or tattooed and not get Peyronie's?  Just something that has entered my mind a couple of times.

Thanks fubar

Brian

Hello,

Although I have not seen a specialist yet. I am 99% sure that I have Peyronies Disease.  I have noticed this condition for about 6 months now.

In short I have a lot to learn.  

My first question is; should I get my family doctor to be aware of this site?

I will have many more.


Old Man

brian53:

Welcome to the forum and sorry to learn that you may have joined the Peyronies Disease family ranks. OK, to answer your question, by all means get your family doctor to get on line with the forum. Together the both of you will learn much about Peyronies Disease, and what the members of the forum are doing about some form of treatment/therapy for it.

Knowledge about Peyronies Disease makes for an informed person, so search out any and all subjects that reach out to you. Just browse through the boards on the home page and you will find a wealth of knowledge the members have developed or researched for use by all.

Again, welcome to the forum.

Old Man  
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

slowandsteady

My guess would be that if it doesn't damage the tunica, no problem. I wouldn't imagine that piercings or tatoos would do that.

reality

Dear members,

I hope im posting in the right area, apologies if im not, new here.

Has anyone suffered the above condition, i was diagnosed with peyronies in august after a pain in june, however in late august after 3 days of severe pain, i awoke erect with a 45 degrees curvature (first ever) and found that my left hand at the ring finger and pinky were spongy and had pins and needles. Also the penis had seemingly suffered a second injury in that it now flopped under the head, it had been normal except pain up to this point.
My urologist here hasnt given it much credence but today i awoke with both hands half closed tightly and again pain under both sets of fingers (ring and pinky)

Has anyone experienced this, i suspect its dupuytrens but no diagnosis yet?
Its extremely quick the onset which seems unusual?
anyway, any thoughts would be appreciated?

Also has anyone gained any normal feeling back in their penis when flacid and if so is there any rule of thumb time wise? mine seems dead..
John

Old Man

John:

Welcome to the forum and sorry to hear that you suspect you have Dupuytren's Contractures. I to suffer from DC, Peyronies Disease (Peyronies Disease) and Lederhose conditions. Had surgery on my left to correct a very bad contracture of the pinky and ring fingers in January 2009 which seems to be coming back again with the drawing effect, etc.

Yes, it has long been suspected that all three of these disorders are related. Several of us on the forum have suffered from them for many years now. So, just be sure that you get checked out by a qualified doctor that can properly diagnose at least the Peyronies Disease and if possible the other disorders as well.

Regards, Old Man  
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

TheLastRobot

Hi all,

I've posted here before, but this is a more general inquiry. I want to know if it sounds to you all like what I have is Peyronie's, and what I can do while waiting to confirm that.

HISTORY/WHAT I'VE GOT

About three weeks ago, I was masturbating. It was taking longer than usual to finish, but I'll be damned if I wasn't extremely happy about that. Suddenly, something feels off. My penis goes limp, red on the underside, and painful to touch. Any attempts to stimulate it cause prickling pain through my penis, testicles, and even my thighs. A visible lump near the head, on the underside of my shaft, is visible. I'm confident it was never there before. Furthermore, it seems swollen at the based, near where my penis meets my testes. This is also new, as it used to be perfectly straight and even.

The next day, the lump is still around, but I'm able to get off successfully. I won't always be this lucky. On and off over the next few weeks, I'll have "partial erections" where the blood only fills up to the lump, and the head of my penis remains limp. Most days I can get it up and off successfully. The size of the lump varies from day to day, some days barely being visible, if at all. In the interim, my penis seems harder and smaller when flacid than it used to be. I often feel discomfort from it in this state. Over time, I notice a slight leftward bend that is only visible when I'm soft. When I feel pain, it is usually on the left side of the penis.

Since this first event three weeks ago, I've been having trouble getting erections. They never come on their own anymore, though I can USUALLY make them happen with considerable effort. My morning wood is rare, fleeting, and weaker than it used to be. I'm a very anxious person, though, and have been especially so about my ability to get up.

Today, after not being able to get even slightly hard all day, I manage to slowly build up an strong erection. I think, now, that I've got the tiniest amount of upward bend, but I may be imagining it. My leftward bend is still virtually invisible when hard. But I notice that I feel serious discomfort touching the left side of my shaft, near the glans. It feels like there is something hard underneath. Well, I can't say that I distinctly felt some"thing" underneath, but the left side is definitely more resistant to pressure than the right. I decide not to insist and let it go. I'm still feeling odd on the left now.

So, does this sound like a harmless injury, or the sinister Peyronie's disease?

I've already seen several doctors since this problem first came up. But, as any other Montrealer here knows, our medical system is absolutely terrible. I'm between MDs, because I clung onto my excellent pediatrician literally until I could no longer legally seek her aid. I'm turning 19 in a few weeks and there's a shortage of MDs in this country. So I've been relying mainly on walk-in clinics. I made a mistake, though: Since I've been under a lot of anxiety, related to school, university applications, and now, my penis, I come to doctors with a barrage of other symptoms. Since the penis thing is extremely embarrassing to talk about, I mention it almost as an afterthought and in not nearly as much detail as I have here. Still, all three doctors have at least taken a look at the little guy. Still, they've all done about the same thing: Poked and prodded around for about ten seconds, and then told me that my penile problems, like most of my others, are probably psychosomatic. Now I know my body, and this is not imaginary. I'd love to go to a urologist, but I need a referral from and MD, who are all convinced I'm just crazy.

WHAT SHOULD I DO:

I'm planning to keep pursuing this, but I can only do so at so fast a pace. Considering waiting rooms waits last 2-3 hours on average, and that's if I arrive at a good time, and I've extremely busy with school, going to the doctor once a week is already very difficult to work in. To me, it seems like I've got some Peyronie's going on, and I want to mitigate the damages as best I can, even if it turns out I'm fine, until I can find a urologist who will give me a satisfying confirmation/disproof that what I have is Peyronie's and I can start getting prescription meds.

So, what can I take/do to try and keep the little guy from getting too bent out of shape (literally)? What options are readily available to me, given that I live in Quebec? I want to start fighting this as soon and as aggressively as possible, despite my pretty meager means.

Furthermore, if anyone knows any Montreal urologists and can hook me up (I'm sure that's not how it works, but it's worth asking) or at least recommend one, it'd be greatly appreciated.

Thanks so much,
TheLastRobot