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Larry H

A marvelous exchange...agree to disagree...compassion, understanding, maturity. These are the thoughts and words that come to mind. It shows the quality of this forum and it's members.

Larry

phil

Tim,

I'd like to find out more about the possible role of CMV in triggering Peyronies Disease.  Can you shed some light or provide some links?

Thanks,

Phil

Tim468

I read about it in a review article, not the original science itself. Here is the link to the review article:

http://www.medscape.com/viewarticle/456650

The gist of it is that: "Peyronie's disease is characterized by cellular overproliferation and excess extracellular matrix production. These features are witnessed in other fibrotic conditions, such as atherosclerosis. Recent evidence supports a role for pathogens in the development of atherosclerosis, such as cytomegalovirus (CMV) and chlamydia. Muhall and colleagues[21] theorize that dormant pathogens can be reactivated by trauma, such as occurs in vigorous sexual intercourse. Cultured fibroblasts derived from Peyronie's plaques compared with control areas demonstrated positive CMV DNA, but transmission electron microscopy failed to demonstrate any viral inclusion particles. These authors speculate that an aborted CMV infection had occurred, but was still able to initiate a fibrotic process after trauma."

He concluded the review article with these words: "The field of sexual medicine continues to attract some of the brightest and most imaginative minds in medical science."

I hope that is true.

The reference is: "Mulhall JP, Barnas JL, Martin DJ. Peyronie's disease plaque-derived fribroblasts harbor cytomegalovirus DNA. Program and abstracts from the American Urological Association 98th Annual Meeting; April 26-May 1, 2003; Chicago, Illinois. Abstract 1059." It is a reference - I do not know if it has been published yet in a peer reviewed journal (much sub-par work is never published).

Tim



"Subject line on this post edited for easy reference"
52, Peyronies Disease for 30 years, upward curve and some new lesions.

Mr BLBC

Quote from: Caring on August 10, 2006, 11:50:32 PM

Mr BLBC

I applaud you for telling your friends and family. I can picture your friends with their fingers in ears...TMI TMI.  Of course they didn't want to hear it. It runs too close to home, something may happen to them, someday, or it may already have- but they can't tell anyone. Who wants to know  about .....Peyronies Disease..............shhhhh.

Who knows where your openness may lead.

For me, being a woman, it was very difficult to talk about Peyronies Disease to anyone. However, I can sort of relate to your experience.
I have a very close friend who has complained of the lack of affection in her marriage and physical changes in her husband,  so I did what any responsible Peyronies Disease involved person would do, talked to her about it and then drug her rear to a Peyronies Disease meeting. When we left, she asked how in the world I knew about this (Peyronies Disease), so I told her. I got the TMI- TMI too. But, in the long run, she now understands the disease and has a new understanding of what her her husband has silently been going through. No, he has never seen a URO and to this day, 3 yrs later, he still does not know she went with me to that meeting.  He would never admit, even to her that he has any problem.
Occasionally I get a  phone call, wanting more  information, and just the other day, she said that she may have talked him into finally seeing a Dr. For this macho, redneck man, that is a huge step. Fortunately, he is going to make an appt. with the Dr. we heard speak.
I tell you this so you can see an example of what your willingness to open up to others about Peyronies Disease can have. One day, someone may come to you and ask for help, and you will know exactly where to send them.
Helping others while helping ourselves.
Fantastic!!!!!


Caring,

I don't know you very well yet but I hope that will change, I hope to continue to read posts like this as they make me tear up......3 years is a long time.....wow....

I'm sure you've read Mrs.BLBC's posts on the ladies board, she's a very special lady...:)

Mr.BLBC



"Subject line on this post edited for easy reference"

zigwyth

Many men feel isolated, embarrassed or ashamed to talk about this Peyronies Disease with friends, family or even others here with the same problem. I would like to thank Rico for taking the time to send me personal messages on  questions I had about supplements, dieting and other things I hoped to gain knowledge about.
Thank You my Brother. I will pray for you and all others here as well.
Ziggy

DannyOcean

Hey, quick question.  I'm contemplating going skydiving and I'm curious as to whether there would be any possible negative effects on my Peyronies.  I'm about two months into it and I'd hate to do anything to set myself back.  Does anyone have a clue as to whether this possibly could?


BLBC

Danny I have sky dived before, personally if it don't deal with your feet (which feel like their gonna fall off) I say go for it, it shouldn't effect your dick in any way. Considering (and realize I don't have a dick) your dick hangs out there I would suggest a "hugging" pair of underwear. I'm not telling you "you must wear a pair of whitey tighty's" there are some kwell one's out there so treat yourself to some snug underware and enjoy jumping from that airplane!

Zig it is beyond me why any man, once he accepts he has Peyronies Disease would be embarrassed to talk about Peyronies Disease. I suppose I can only write it off to hormones. I know that if women were to have a similar disease they would be vocal and demanding a resolution. Trust me they would! Personally I do not see Peyronies Disease as a "man's" disease it effects me TOO, so by gawsh (I really cleaned THAT up) I am doing everything I can think of to get the medical – pharmaceutical community to open their eyes about Peyronies Disease!  


Caring

Thank you for your kind words.
Yes 3 years is a long time for one to have this and do nothing, either medically or  to restore/resolve issues in a marriage. Even without Peyronies Disease, that is not a comfortable way to live ones life.
Yes, you do have a very special, passionate woman  in your life. You are very fortunate she is involved here and in the fight for your personal lives.
Stay tuned in and online with this wonderful, sometimes strange  ::) support group.

zigwyth

DO. Man, I'll go with you skydiving and video record us. It's all about Living.

Blink

Caring: Strange??? Stranger than who??  Hell, If we can't laugh at ourselves, we are in a bad way! If I had to choose to laugh or to cry....I'd choose to laugh!! I have cried enough in my life. I'm finding that after the shock and reality check passes, most of the people on this forum have a great sense of humor. Hawk and his merry bunch!!    Keep the Faith...Blink
We are not specialists, but we are special for what we know.

scott

DannyOcean,

The only concern about skydiving I can think of is that harness that goes through your legs.  I never looked at one that closely, but I seem to remember from pictures that it goes on both sides of the privates and through the groin areas on both sides.  You might want to check into extra padding....

Let us know afterwards whether it did create a problem, and also how much fun it was and whether you wet your pants.....

Scott


Liam

My wife's nephew (an adult) did a tandem jump with an instructor who had a bad leg.   The instructor told him to wear shorts (and the did not give the students a jump suit).  To make a long story short, after the jump he was singing an octave higher, his shorts and boxers ripped all the way and they had to land sitting down (bad leg).  He said his wife had to pull splinter out of his backside for a week.  It's really funny to hear him tell it.  But, at the time it happened......OUCH!

Liam
"I don't ask why patients lie, I just assume they all do."
House

Rico

I was searching on the penis septum, this is where I have my scar. I came upon this site, "Gray's Anatomy-The Penis-yahooligans!Reference"
I thought the very bottom of the text had a good true look at the inside of the penis, how the nerves where layed out ect...plus the text is more specific than most I have read....I put it in my favorites...

Rico
"The Sun Also Rises"

ComeBacKid

Scott,

Unfortunately we have now dropped the drug coverage out of my plan starting this month, we save $100 on this.  My insurance company has lied to me on a consistent basis, I've been very disappointed with the coverage I've received thus far.  To appeal anything they won't even get back to you for 60 days minimum.  Just recently I tried to get my Soma Correct covered, Mike Davis from Augusta took care of all the paperwork etc.  First they promised us a $400 payout.  The first time we filed the paperwork they rejected and claimed the codes were incorrect.  We got this fixed and went to great lengths to do so with an uncooperative doctor.  Now they will only reimburse me $146 and are going back on their promise of $400.  When Mike and I confronted them they called Mike a liar.  Mike got so furious he had some upper management people from Augusta Medical Systems call my insurance.  They wanted to talk to the original lady who promised me $400.  Conviently she no longer works at the company and was terminated for unspecified reasons a month ago.  My insurance company then attacked Augusta Medical Systems and called them liars and said they overcharge for their VED's by "hundreds of dollars and take advantage of people."  So pretty much crap hit the fan, I'm looking into an appeal on this but like I said its a minimum of 60 days before you even get a response, which they may reject anyway.  I may just drop health insurance coverage soon, for me its a waste of money altogether.

ComeBackid

scott

ComeBackid,

I hope that when you said you were thinking about dropping your insurance, you were just p.o.'d and not serious.  I know that you are younger than most of us old codgers, but even at your tender age and the low probability of developing a serious health condition (other than Peyronies Disease), you *must* keep health insurance.

Of course, there are ways around everything.  If you work for a large company, they may have more than one health plan, and you could change at open season.  If your company has only one insurance plan, but is still a sizable company, you could complain to your company health plan administrator, usually in human resources/personnel.  Failing that, you can complain to your state insurance commissioner, and believe me, the last thing an insurer licensed by the state wants is a complaint investigation.

For the benefit of everyone here, why don't you name the insurance company?  I have always believed that great companies should get public praise, and poor companies should get their just due....

If you want more, send me a private message and we can go into all the details.

Scott

ComeBacKid

I'm currently unemployed and just graduated college living at home for the time being.  I have sent letters appealing some decisions and I did file a formal complaint with the state insurance commission, the guy did nothing for me and claimed MEDCO was out of his jurisdiction.  My main problem was with MEDCO who administers drugs for my plan, and a company from Rochester, Michigan who deals with the durable medical goods.  I've talked to several pharmacists who've encountered the same problems I have in dealing with MEDCO.  I wrote MEDCO and wrote to my board of trustees overseeing insurance operations and filed a state insurance commission complaint.  I tried being nice with MEDCO and they lied and decieved me so I let them have it, they deserve what they got.  Three lies is three to many.  I still do have health insurance but just the basic coverage at this point, I still believe it is a waste of money to pay individually if you don't get it through your work, at my age of only 22.  The fatcats continue to profit and put a couple more BMW's in their driveway.

ComeBackid

scott

ComeBackid,

Wow!!! And I thought you were just a young novice in need of help....You've covered all the bases, and I have nothing else to suggest.  Please do consider keeping your insurance, even just for basics, as you never know whether you will be in a car wreck or fall off a cliff.  Have you seen hospital "retail" charges?

Please feel free to call upon me at any time I can assist you etc . etc. etc.

Scott

flexor

The following appeared in this Sunday's "Mail on Sunday" – a large circulation UK newspaper, in a column by Carole Caplin, their lifestyle advisor. (She is also the woman who is reported to advise Tony Blair's wife on everything from clothes to diet)

Question: I have Peyronies's disease and it's becoming more and more distressing. As well as the obvious detrimental effects on my marriage, it is also affecting my confidence. Any advice would be welcome. Steve, Cambridge.

Answer:  Peyronie's disease causes fibrous hardened tissue to form in the penis, resulting in pain, bending or indentation, and in some cases, loss of erectile length. It is most common over the age of 45 and affects about one percent of men. In severe cases it causes impotence or incomplete erection, but early detection can reverse symptoms. Medications used to treat it include vitamin E, PABA (a B-complex substance), collagen, steroids and colchicine, which is also used for the treatment of gout and helping prevent scar tissue.
Proper nutrition can improve overall health, boost the immune system and help the body to heal itself. Avoid sugar, dairy products, refined carbohydrates, fried foods, junk food and caffeine. I'd also advise you to switch to organic foods, fruit, whole grains, vegetables, soy, beans, seeds, nuts, olive oil and oily fish. And of course, drink plenty of water. To help prevent connective tissues thickening, take 750mg of the enzyme bromelian three times daily.
You may also benefit from Autonomic Response Testing and immune system strengthening.

*************

You don't know whether to cheer that the subject has even been mentioned, or to cry at the glibness of the response

percival

Flexor
As a Brit, I appreciate this post. That Carol Caplin should be offering advice on a subject that is continuing to baffle the whole of the medical profession is worthy of a Monty Python sketch - rather like the one where the cleaning lady is hunting the quark.
Can't say that I appreciate the Mail on Sunday or any other day for that matter, but at least the subject got a mention. Ms. CC can clearly cut and paste, but it is a pity that she didn't stumble upon this forum and give the guy the web address.
We should at least make sure that our GP's and urologists know about it so they can pass it on.
Percival

Liam

For what it's worth here is the link.  

Interesting  ::::raising eyebrow ala Spock::::

http://www.guardian.co.uk/science/story/0,,1874818,00.html
"I don't ask why patients lie, I just assume they all do."
House

ComeBacKid

Liam,

Wow, interesting, I guess its a start to learn from, lets see how the procedure has come along in 15 years.  

ComeBackid

Tim468

Interesting that the title of the article says "Man rejects first penis transplant", and the article points out that it was removed for severe psychological problems.

This gives new meaning to the old joke "I wouldn't f*@# her with someone else's dick!"

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

ComeBacKid


ComeBacKid

"And of course, drink plenty of water. To help prevent connective tissues thickening, take 750mg of the enzyme bromelian three times daily."

I took this excerpt from a post a couple down, I remember someone mentioning Bromelian, is there any studies or scientific proof that it can keep connective tissues from thickening?  Sometimes its concerns me that we try to tie what one drug will do for something, and rationalize that it could work for peyronies, seems like this should be beoing done by the researchers and doctors.  On the other hand, no one is trying anything new except the collaganese and VED's, maybe someone on this forum will discover something that works.



ComeBacKid

" it can heal...but I do believe to use just time, especially in the first 12 to 18 months is a gamble I won't take, because this is the time one has the best chance for something to work...."

Rico,

I remember when I had the disease many years ago, my penis was still bent the same way, but much more flexible, there is no doubt in my mind that attacking the plaque with treatments earlier on is better, unfortunately I don't have that option anymore.  The thing one needs to be careful about is are they still attacking the plaque while its in the "active," phase?  I think we have tried to simplify what the "active," phase is, but for me it seems like my peyronies all along was every so slowly worsening up until now, maybe some peoples peyronies are always in the "active," phase but they don't notice it right away. For me it seemed like I had a phase where my plaque was soft and stretchable, compared to where I am today, where my plaque is hardened and contracted, possibly still stretchable but will take much more time to do so.



George999

I too have a problem with this 'active phase' thing.  I think that one can go in and out of 'active phases' with peyronies if 'active phase' is defined in the classic sense of inflammation and all of that.  I also have a problem with the idea that peyronies is somehow more difficult to cure after the 'active phase' is complete.  I think that some people who get 'cured' actually just happened to be fortunate and recovered despite whatever therapy rather than because of it.  So while the term 'active phase' might make sense to a physician, I'm not sure it does to me as a patient.  At this point, we don't have a proven solution to this peyronies puzzle, but we are certainly gathering a lot of pieces, and perhaps maybe even getting a few in the right places.  That is a process that becomes much easier with such a large and dedicated group of people who provide such great input and ideas on the various threads of this forum.  There are just so many peyronies sites around now and they all have their niche, but there is nothing else going on quite like this on all of the web, at least not that I have observed.  From Rico's expert input from a body building perspective to Tim's expert input from a physician's perspective and of course Old Man's VED expertise, Hawk and all the rest, I could go on forever.  As a result there is just a lot of pertinent data and opinion and patient experience, all building up here in one place.  There is just so much value in that for all of us and for all who are looking over our shoulders.  I am just really optimistic that this riddle will soon be solved and that many participants and observers right here will benefit from that.  My from the heart personal thanks to all who are participating and making this possible.

Hawk

I am very confident, that if anything close to this was going on anywhere else in the world, on the Internet, you would have found it.  ;)
Prostatectomy 2004, radiation 2009, currently 74 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Old Man

George999:

Just adding my 2 cents worth about the so called active phase. Over the past 5 decades of my Peyronies Disease, I have been in and out of the active phase at least 4 if not 5 times. Each episode brought on new and different symptoms. Each case went away or into remission with different therapy treatment. Some possibly was spontaneous regression, who knows, but they went away only to come back at a later time.

I found that the most reponse that was received as far as treatment is concerned was gained during the early stages of the curve, plaque, nodules, string like cord on the dorsal area, and on and on.

Anyway, the bottom line for me at least, is that any results that I received was during the very early stages of development. My firm belief is that some treatment should be started as early as possible, but with caution not to aggravate the situation. Over zealous exercises can and will do further damage to already damaged tissue resulting in more symptoms. So one must use extreme caution in the type of treatment they select.

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.

SteveW

Well, months ago I (and my doc) felt I was "stable."  SURRRR-PRISE!  Over just the last 2-3 weeks or so, I am "active" again.  The large mass seems to be growing (if you will) in a new and different direction.  The plaque "plate" has been consistent up until now; covering the majority of the top side of my penis.  Wide at the base and narrowing towards the head.  I have maintained at bend of at least 70 degrees for months.  NOW, the plaque is changing shape and has begun creeping down the left side of my shaft.  

The mass isn't moving, it is enlarging to one side and seems to be wraping itself around my shaft covering roughly the center 1/3 of my shaft.  Now it is making my penis not only curve upwards at a nearly 90 degree angle (as has been the case for about a year), but is now causing my penis to twist strongly to the left.  I have always had a natural hang towards the left, but now it is becoming more pronounced and severe.  Sigh.  Surgery my only hope?  

 

20 years of Peyronie's / ED
Tried pills, VED, Verapamil injections, traction, Trimix & more.
Implanted 2/18/21. AMS cx 18cm + 3 RTE. Gay, 67.
Dr Etai Goldenberg, St Lous, MO
Now having lots and lots of wonderful sex!

ComeBacKid

SteveW,

I've had my disease for 7 years now, mine seemed to have slowly worsen until this past April when it suddenly shrunk and hardened, and the curve got a little worse.

I thought you were working with the traction device?  I would try ALC at least 2000mg per day, if not more, that seemed to help with my pain and Hawk has reported to me it helped with his pain as well.  Have you thought about trying the soma correct VED?  Didn't you have Verapamil Injections as well before with no luck?  If I were you I wouldn't go for sugery just yet man, especially with collaganese, I'd at least wait around long enough to try them out, even if they are slow as hell in getting their product to market.  I seem to be having some small gains with pentox, my penis is hanging better and my erections are more full, perhaps you might try that.  Studies show that it can reduce plaque even calcifications if your on it for long enough.


Tim468

Steve,

I am so sorry to hear the news about your placque. I know how discouraging it can feel to have that happen. Hang in there.

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

SteveW

ComeBackid,
When my partner passed away in June, my twisted dick was just not too far up my list of priorities.  I have not been in traction or undergone any treatment in almost 4 months.  Then, in the last few days...bam!!!  Again!!!  Oh btw, the pain is quite severe.

Tim,
Thanks, bud.

SteveW
20 years of Peyronie's / ED
Tried pills, VED, Verapamil injections, traction, Trimix & more.
Implanted 2/18/21. AMS cx 18cm + 3 RTE. Gay, 67.
Dr Etai Goldenberg, St Lous, MO
Now having lots and lots of wonderful sex!

ComeBacKid

SteveW,

I wish you the best man in coping with your loss, keep the faith and stay strong!

ComeBackid

Rico

http://www.loupaget.com/july-05.php  

I do believe the knife is the last chance hotel...

Rico
"The Sun Also Rises"

csup

Hi all, first time here so not sure if this is correct spot to ask my ? but here goes. I had inguinal hernia surgery a little over a month ago. After the first week or so, noticed that my penis was sore (like it had been wrenched around) whenever I got an erection. A few days later I noticed a small bump near the base that was and still is tender. I went to my Uro yesterday and was diagnosed w/ Peyronies Disease. So far I don't have any bending, just started to notice a slight hour glass shape when it is hard. I am curious if anyone has developed Peyronies Disease after a surgery in the lower abdomen. I was knocked out for mine so who knows what fun they had down there during the operation. All fun aside, I am having trouble thinking that it's possible that if I hadn't had the hernia op I might not now have this new life long situation to cope with. Any thoughts?

Hawk

Welcome Csup,  We are sorry to hear about your Peyronies Disease but glad you found us, especially at this early stage.  I am also glad you are participating in the discussion.

Just because "A" precedes "B" does not mean "A" caused "B", but it also does not mean it didn't.  I have heard a lot of anecdotal stories such as yours.  It is also well established that there is a higher rate of Peyronies Disease (although still not very high) among men who have had a prostatectomy within the prior 6 months than there is in the general population.  I have heard no explanation other than catheterising, nerve damage reducing blood flow, or clamps etc to keep the penis away from the incision site.

Prostatectomy 2004, radiation 2009, currently 74 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

csup

thanks Hawk. I have no way to prove or disprove for that matter that this is a result of the operation. I do know that 5 weeks ago I did not have any symptoms that I knew of. I have thought about a possible wrong movement of my penis during the procedure, but didn't consider clamps. That hurts just thinking about it. LOL. My Uro wants to start verapamil injections, but after doing some fast research online the last 2 days, I am not sure about this approach. I did start taking vit. E, and have been taking L- arginine as I am a runner and mess around w/ weights. Maybe I will let this work for a short time to see if this "disease" goes in a different direction, hopefully at least no worse. Right now I feel lucky compared to some of the conditions I have read about. crs

Tim468

It would be wildly speculative to guess why a surgery might have caused Peyronies Disease.. but here goes!

It is possible that a retractor "leaned" on your penis too hard. Thus, this might represent an "injury", and a good normal healing process leads to remodeling and return to normal. This might still happen to you. I would like to know the exact technique used during your operation - how you were draped, and how they cleared the operative field.

It is possible that this will get all better - in fact more likely for you than for those without a (quite possible) mode of acute and recent injury. good luck.

Oh, and think hard about getting a "broad spectrum vitamin E" - I get a SolRay one that has gamma tocopherols at 300 mg.

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

csup

Tim, I bought Nature's Bounty full spectrum 400 IU vit. E. Taking 1 a day for now. I am also considering calling or visiting my surgen to see just what might have been the procedures he used as far as draping, etc. I wish all surgeries no matter how small were filmed. The op itself was a plug and then a patch over that. crs

Liam

I tend to agree with Hawk.  But.... I had a dentist who injured my shoulder while extracting a wisdom tooth (many moons ago).  I guess anything is possible.

This reminds me of a limerick from Dean Martins swizzle stick (from the TV show):

There once was a man with a hernia
Who said to the doctor, gol'dern ya
While working away
Make sure you don't play
With things that do not concern ya

I think I'ma gonna go ovah to de couch.
"I don't ask why patients lie, I just assume they all do."
House

csup

Liam, thanks for the laugh this morning. Started my day off right!

Old Man

Note to all:

Injuries to one's penis can and does sometimes happen during surgeries. During my double hernia operation (local anesthesia done) the scrub nurse, accidentally used the wrong clamp (forceps of whatever) on my penis and caused a whole heap of pain. The surgeon removed it and then used the right one. But, about two weeks later, nodules appeared in the exact spot where the clamp was used. It was Peyronies all over again.

IMHO, injuries can be done during surgeries. However, I firmly believe that most are not caused by negligence, but just things like that just happen sometimes.

So, bottom line, we have no control over what happens to us while under anesthesia, either total (put to sleep) or by locals, etc.

The above is just my personal observation. BTW, the surgeon apologized for it all.

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.

csup

I would think that during a hernia surgery, the penis should not be having anything clamped to it. It is not exactly a supporting type of body part. If it is an issue, I would think just taping it down and out of the way would work. but I am no Dr.

Old man, you don't say whether you had Peyronies Disease before your hernia op. I did not, so this makes it a little harder to swallow that this could have been an surgical accident or result of the procedure technique. My family Dr. originally thought I had a double hernia (one on either side). My surgen said I only had the one side. My Uro who just diagnosed the Peyronies Disease said he thinks I still have a hernia on the other side, so this does not give me a warm fuzzy feeling about my surgen (who won't be anymore) or his capabilities. It would be interesting to know if any of his past hernia patients got Peyronies Disease right after their surgery. crs

Old Man

csup:

Sorry, but I guess that I assumed that most everyone on the forum knew my background with Peyronies Disease. At 77 plus, now, have had this crazy mess since the age 23.

Yes, there were bouts (4 or 5 to be exact) of Peyronies Disease prior to the hernia surgery. Had a radical prostatectomy prior to that also. During the prostate surgery, the drainage tube was accidentally stitched into the abdominal wall requiring a second surgery. Had a bout of Peyronies Disease after those surgeries too.

I checked with my uro about the prostate surgery as to whether or not it could have aggravated the Peyronies Disease condition. He stated that possibly the clamps or "tie down" of the penis could have caused some minor injury and it was not uncommon during some surgeries.

My hernia surgery required a Goretex patch all the way across my lower abdominable cavity to help hold up the walls since I had the prostate and correction of drainage tube operation which left the walls thin for some reason.

Anyway, bottom line, Peyronies Disease did occur after at least two surgeries and it was attributed to them by my doctors and/or surgeons. Whether or not those statements are actually true of not, I have no clue. All I know is that the Peyronies Disease returned after those surgeries. Since catherters were used after those surgeries, that factor could also easily enter the picture also, who knows?

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.

csup

Old Man,
Sorry to hear you have had to put up w/ this Peyronies Disease mess so long. When you say "bouts", what exactly happens at that time, and what is it like in between the bouts? crs

Mister Dillon

Quote from: Tim468 on October 19, 2006, 09:34:38 PM


Oh, and think hard about getting a "broad spectrum vitamin E" - I get a SolRay one that has gamma tocopherols at 300 mg.

Tim

Tim I have finally learned enough about Vitamin E to want to change the type (broad spectrum) that I am taking now.
Were can one purchase the SolRays - is it generally available at most Drug stores

Thanks

Mister Dillon

csup

Mister Dillon,

I went on a web search and found Solaray brand vitamins, not sure if this is what Tim meant.  I bought "Natures Bounty" brand from CVS (Michigan chain drug store) that has full spectrom tocopherols at 400IU. I think Tim meant 300IU instead of 300mg. Some standard vitamins such as vit. E  spec by IU (internatioal units) instead of mg (milligrams). Someone please let me know if I am all wet on this.

crs

Old Man

csup and Mr. Dillon:

Vitamin E is in I.U.s instead of mgs. csup is right, they are international units of measure, etc.

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

The vitamin E is is measured in International Units. The Solaray version I get is 400 IU, with 300 milligrams of gamma tocopherol (the tocopherol and tocotrienes subunits are measured in milligrams).

Here is the breakdown:

Bio E® Gamma Plex

Product description:
A Superior Tocopherol Complex with Tocotrienols

Ingredients:

Vitamin E (as d-Alpha Tocopherol) 400 IU 1333% (% of RDA)
Selenium (as Yeast-Free l-Selenomethionine) 200 mcg 286%
Natural Tocopherol Mixture: ~
d-Gamma-Tocopherol 300 mg ~
d-Delta-Tocopherol 120 mg ~
d-Alpha-Tocopherol 70 mg ~
d-Beta-Tocopherol 5 mg ~
Rice Tocotrienols (providing 5 mg Tocotrienol) 30 mg ~

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

George999

More correctly, Alpha-tocopherol is measured in IU, the rest of the Vitamin E components are measured in mg.  The reason for this probably has something to do with the advent of synthetic Vitamin E.  Synthetic Vitamin E is not exactly chemically equal to natural Vitamin E, therefore it takes more mg of synthetic E to equal the effect of a lesser amount of natural E.  So 400IU of sythetic E (alpha-tocopherol) will consist of more amount (mg) than the same 400IU of natural E.  As I recall this all gets explained somewhere on Wikipedia.  The International Units represent alpha-tocopherol activity rather than amount.  The purpose was thus to avoid confusion.  All the rest of the toco's have no synthetic analog, thus no reason to introduce a second means of measuring them and they are sold in mg just like most other supplements.

- George