Progression of Peyronie's Disease

[phil]

Totheleft:

Thanks for the insight.  I know a couple of the guys here have used it extensively with no ill effects and with some improvement.  Do you feel the enzymes you are taking are entering into you system through your digestive system and reaching the plaque?  

Thanks,

[totheleft]

Hi Phil,
Unfortunately, I don't know. Let me give you a little more history, about me. When I diagnosed myself, and I knew immediately what I had, I immediately hit the internet doing literature searches for a possible newer treatment. In a previous post I had mentioned I had a plaque years earlier which apparently got better on Vit E. I continued myself on Vit E thereafter, for 16 years before i had a recurrence. So was it the vit E or just my own immune system resolving it on my own ? So, with my recurrence Vit E was not my first choice, but I did make sure i switched to natural gamma  Vit E. In my literature searches It seemed that topical verapamil actually had some promise. I don't remember the site, but I read an abstract that topical Varapamil resulted in better than a 80% improvement in pain initially, with an improvement in the bend with long term use~6-12 months. As stated in my previous posts, absolutely nothing, hence I am really depressed. So I am feeling desparate. I bought the online book, from the skeptical nutritionist on peyronies disease. Like everyone else,  We are looking for possibilities, anything.
I believe these supplements are relatively safe. I decided to take several months of vitalzyme as a trial. Thus far, I am as i was 4 months ago. I believe my disease has stabilized, I believe the pain improved on its own which is natural for the disease process. For reasons I cant explain, I think I still feel promise with the thackers. Unfortunately except for Surgical procedures I don't believe there are any studies which are able to document a Medical improvement with enzymes, vitamins, supplements, topicals, mechanical devices etc. Unforunately alot of the successes, in my opinion, in alternative medicine are based on anecdotal or an individual's testimony to a certain treatment as opposed to an objective randomized study.
But like yourself, I am willing to put some faith in someone else's experience and try "unproven" remedies. Unfortunately in conventional medicine, we cannot do that. It may lead to a lawsuit.... haha........Have a good one.......totheleft

[roadblock]

Just from passive observation on the forum, it seems like the only "success" has come from IR and the vacuum device. Makes sense...the tissue we are dealing with is similar to the material that makes up our tendons, and the way to improve flexibility/mobility after musculoskeletal injury is heat and stretching.

In the early inflammatory/painful stages, many of the supplements are probably doing their best work. Vitamin E, PABA, acetyl-l-carnitine, baikal skullcap, Vitamin D supplementation...I think the earlier the better.

But what about "stable" disease? Well, since we are essentially dealing with scar tissue, these supplements work on the scar formation/remodeling process. So, in conjunction with the stretching you get with the vacuum device and infrared heat which ultimately will cause micro tears in the scarred tissue (which is the point of maximum tension), the HEALING of those microtears will be hopefully normalized by the supplements.

Anyways, that is my theory. Unfortunately, I still have some pain so I'm not doing much of anything. I believe the rule "if it hurts don't do it" with regards to Peyronies Disease is valid. But once that is completely resolved, I'm going to continue with the supplements and do the stretching/IR. We'll see how it goes!

[j]

I think there are three realistic possibilities: AA4500, traction, and antifibrotic drugs.

1. AA4500 appears to work (based in Phase II trials) but Auxilium isn't apparently in any hurry to complete the approval process and market the drug.

2.  Traction (VED and stretching devices) is gaining credibility.  Traction forces applied for long periods of time can cause the crosslinked collagen bonds to break and re-form in a uniform direction, lengthening the fibrotic area and relieving the bend.

3. Peyronies Disease is one of a group of "superficial fibromatoses" which might respond to antifibrotics such as are used against - for example - pulmonary fibrosis or desmoid tumors.

The problem with #1 is that the patent is in the hands of big-money guys and they make money just buying and selling the patent, rather than actually marketing a product.

The problem with #2 and #3 is that we need some urologists willing to try these things instead of just continuing to prescribe the old standbys like colchicine, pentox, vitamin E and transdermal verapamil - none of which actually do anyting in my opinion.

I'm pretty skeptical about the IR 'heat lamp' treatment. Without lab analysis to see what's really happening with the tissue at various temperatures and durations, it's just a shot in the dark.

"Thacker's Formula" is in my opinion essentially a folk remedy with little anecdotal evidence and no obvious scientific basis.  

[Joshua]

I agree with J's post. It is a very good post. However, I also think infrared or likely any type of deep penetrating heat coupled with the traction/ved devices might alos be a beneficial addition. I realized some benefits while aggressively using infrared heat and light VED use. I assume it was the infrared heat that helped. However, I will be honest my peyronies seems to be very unstable. It has came and gone. It has been a very unusual case. My biggest improvement last year seemed to come unexpectedly when I had almost gave up on treatment. It reversed by 70 to 80 percent within weeks. My penis is in good shape right now. I would say it currently is as healthy as it has been since pre-Peyronies Disease days. However, I am not convinced I am out of the woods. I feel like it is in some kind of remission and could strike back at anytime. I just don't trust it.
Joshua

[j]

Joshua, I suspect there are multiple causes for a bend or curve, all of which are currently being called Peyronie's Disease.  I am perhaps one of the "classic" cases since I also have Dupuytren's contracture and Lederhose.  My bend came on in a short period of rapid progression and hasn't changed in the 2 years since. Transdermal Verapamil did nothing, neither vitamin E.  Maybe some things work on some guys, depending on the underlying cause.  I don't claim that I have "real" Peyronie's and others don't, that would be pointless - a bend is a bend after all. But some people clearly have an underlying fibrotic disorder that manifests itself in several ways.  Others may not have the same  systemic disease, but a similar problem due to localized injury or inflammation.  

[flexor]

Another aspect to consider is that some plaques have calcified, so you are no longer dealing with a totally collagen structure. A VED may stretch the collagen, but may not stretch calcified plaque, hence it may not work for some people. If some oral treatments actually destroy the collagen, they may still leave a cacified structure. (This may also be a reason for the ACV in Thacker's formula.)

[roadblock]

Just a few general questions, hoping someone has some positive insight...

My Peyronies Disease seems to be "diffuse"; that is to say, not just one area of plaque but pretty much the entire thing. There is nothing I can point to and say "yea, that is a plaque." Most people here on the forum talk about plaques and focal symptoms. I have pain up and down, "banding" or "waisting" when semi-erect, and so far just a small curve with erection. What can I expect?

Hoping especially that some of the new members or visitors might have a similar experience and can add some insight if they are further down the road. I'd love to believe the pain is gonna go away and everything will be great but I doubt that is gonna happen (me being cynical!) It's been almost 6 months, almost two months of an intensive oral supplement regimen...anyone have any words of encouragement? I'm 29 years old...what do I have to look forward to?  

[j]

roadblock, I also have no visually obvious lump or 'plaque' but a more generalized area of fibrosis. The pictures you see on medical web sites show a pronounced lump but I think that's just for illustration purposes. The urologist that examined me said I had a "large, thick" plaque. I think what he identified was a sizeable area of fibrosis in an interior layer.   Also, I had pain for months and it eventually went away - that's typical.  

flexor, I keep hearing about 'calcification' but I have yet to see a scientific explanation of what that really means. I see detailed descriptions of cross-linking in the collagen, but nothing about deposits of calcium. I've had Dupuytren's contractures for years and they've never 'calcified' as far as I can tell; and when hand surgeons talk about Dupuytren's there's never a mention of calcification.  Do you have a web link to some factual information on calcification?

[Hawk]

Interesting reading men.  I had small beads (2 or 3) about twice the size of a BB but they were gone within a couple months and they were deep enough that I had to be totally flaccid to find them.  I did so by working with a finger on one side of my penis and my thumb on the other.  They were at the point of a thumb sized indentationindentation.  My natural state was a 15 degree upwardward curve.  I quickly got a 15 degree downward curve.  That went away so i was straight.  Then I developed a 10-15 degree right curve.  I can feel a texture difference in that area but nothing I would call a lump or plaque, or calcification.  It feels like subtle scar tissue.


J,  I am sure I have read that "calcification often occurs to the plaque" on medical web sites.  I am at a loss to verify that however, so I am interested in the answer if it is found.

[roadblock]

Great feedback...I really appreciate it. Hopefully many other members will benefit from it as well, and hopefully more members and visitors will post more stories so we can all learn from each other's situation.

[flexor]

I can't give any references on the calcification of plaque. Like Hawk, I have always understood that some plaques could become calcified. May be worth researching.

You could check on the report on the Leriche technique in the Resource Library, where the individual  patients are defined as having calcified plaque or not, this being identified with ultra-sound. And the table of results identifies the individual results as with being with calcified plaque or not.

The point being made in that report is that they consder the technique suitable for both calcified and non-calcified (which sort of implies that other techniques may be suitable for one and not the other.)

[j]

I did some more web searching and found many references to calcification, although no hypothesis as to why or how it occurs. Apparently it's quite visibile with ultrasound or other imaging techniques.

Every now and then someone brings up the Leriche technique and I still wonder why it's not (apparently) being done anywhere. Or maybe it is, in Europe, where the medical community seems to be more pragmatic, less concerned with litigation - and maybe less money-driven.

A similar techinque is used in Europe for Dupuytren's contracture with great success. It's now being slowly adopted by a few hand surgeons in the U.S. It's called "needle aponevrotomy", the results speak for themselves and the momentum is growing. If some urologists would decide to try Leriche - I'm sure that with research and careful procedures any risk of nerve damage could be minimized,.

[Joshua]

Not to change the subject, BTW great information guys, On the subject of progression. I wonder and I am thinking of wording a poll, about how many of us started our Peyronies Disease with the classic hard "bb" or "pea" sized ball or balls of hard plaque in the middle of our penis?  

[phil]

Joshua,

Good idea.  Mine started as a bb sized lump and seemed to move over time to different locations in the middle of my shaft, and got slightly bigger to about pea-sized.  It now cannot be felt, but rather a kind of fibrous cord the length of my flaccid penis is the only thing I can feel.  However, when I went for my ultrasound, the uro identified the size (18 cm) and location of the plaque.  I'm 19 months into this thing and it seems to be stabilizing. At least I hope it is.

Phil

[roadblock]

phil,

  How much of a curve did you start with and how did it progress? Was it related to where your plaque was? Did you have pain and if so how long? I have noticed that band-like thickening longitudinally in the center that you were talking about myself, and I'm worried that since it's only been about 6-7 months for me, that as this scar heals and contracts it's gonna get a whole lot worse.

[phil]

Roadblock,

I did not have any curve for about 11 months.  I did have a small indentation on the left side for about a year.  That location is where the plaque is, and that is where my curve began to develop.  It started at about 30 degrees to the left, went to about 60 , and now seems to be at about 45 degrees, however now I have an upward curve also of about 30 degrees.  Pain was present on and off for about 6 months. I had a prostate infection which seemed to complicate diagnosis. I was on 4 different antibiotics for 6 months and this probably helped prevent plaque from enlarging.  Had a cytoscope for the infection and after that was diagnosed with Peyronies Disease.  Went another 6 months with pain, and then curved developed. Pain seems to be gone now, but infection seems to be back. Now back on antibiotic.  We'll see if it helps scar. Probably not now. Uro wants me to try iontophoresis but i can't find anybody to do that procedure locally.

Hope this helps.  

[Mick]

J:  Dr. Mulhall discusses calcification on the APDA web site (peyroniesassoc.org) under "Ask the Doctor", Jan. 2004, ques. 2.

[charli]

HI, NOT SURE IF I'M DOING THIS RIGHT BUT HERE GOES.NEVER DID A CHAT, FORUM, NOT COMPUTOR LITERATE.  
MY PENIS WAS ALWAYS STRAIGHT WITH A SMALL DOWNWARD CURVE.  IN NOV. '05, IT HAD A DOWNWARD BULGE ABOUT 1/3RD FROM THE BASE. UROLOGIST SAID Peyronies Disease. NO PAIN, NO DISCOMFORT. I'M DIVORCED, HAD NO ONE TO " EXPERIMENT " WITH. NOW DR GIVES ME SCRIP FOR 3 MONTH SUPPLY OF "POTOBA". 6 pills per day, 4 x's daily.  I'M 67 Y.O.. AETNA HAS NOTHING LIKE IT. MY DR JUST FAXED THEM A FORM TO SEE IF THEY WILL ACCEPT. I DID FIND IT ONLINE FROM A PHARMACY DISCOUNTER FOR $ 953 FOR THE 3 MONTHS. I ALSO FOUND HOPE PHARMACEUTICALS, SCOTTSDALE, AZ- 1-800-755-9595 THAT HAS A GENERIC. " AMINOBENZOATE POTASSIUM. 3 MONTH SUPPLY- $ 447.75, WHICH I ORDERED UNTIL AETNA COMES THRU.
MY CONCERN, ACCORDING TO DR, IT COULD GET WORSE, PAIN, ETC. NATURALLY I'M WORRIED, EVEN FORGET THAT I HOPEFULLY WILL MEET SOMEONE.  SHOULD I GET A 2ND OPINION
I READ SOME OF THESE MESSAGES IN HERE & IT SCARES THE HELL OUT OF ME.
CHARLIE !

[wizard]

Charlie,

You did a wonderful job in expressing yourself. Had you not mentioned your inexperience, no one would know. I really do not know much about Potaba, except the reports have been mostly negative; stomach issues,etc. Although some men have reported some benefit, I for one would suggest you do seek a second opinion. It certainly will not hurt.
I am curious about your symptoms as you mentioned you do not have pain or discomfort. What are your symptoms?
Hoping for the best when you visit another physician!

Wizard

[roadblock]

Maybe someone can provide me with some info based on their own experience...

When people describe the "hourglass effect" or "waisting" they are usually talking about during full erection. In my situation, however, I will have a rather severe hourglass effect while obtaining an erection, but once I do it isn't there at all, although it does appear to contribute to the overall curve slightly.

Has anyone had this experience? What was the progression that you experienced? As always feedback is appreciated and will benefit everyone!

roadblock

[SteveW]

In my case, the hourglass is not apparent when soft, but becomes pronounced when erect and gets more severe the harder the erection.  About half my original girth is reduced in about the middle third of my penis.  

[dcaptain]

Roadblock,

Your symptoms are similar to mine.  I only infrequently have what appears to be an "hourglass" effect, and only when semi-erect.  It's more like when I'm about 40-50% erect.  Once I have a full erection there is no hourglass.  It really hasn't changed much over time.  I don't know that this helps, but at least I can say I'm experiencing the same thing.

dcaptain

[Hawk]

Below is an important post by SteveW.  I moved it and the responses to https://www.peyroniesforum.net/index.php/topic,30.0.html  in order for any or all to feel free to continue a very appropriate discussion and for new comers to be able to find some support from what they read.

Nothing has improved.  Doesn't look like it's going to, I guess.  And over the last few days, I have become incredibly depressed and defeated.  I'm just short of a year in, so I probably sound like a big weenie, but my condition and prognosis just seemed to hit me full force lately.  This condition makes me feel, for a lack of a better word, lost.  I logically know I am not alone, but emotionally I am suffering.  Don't exactly know where to turn next.  I am not generally a defeatist or negative person and I have tried, but damn.  Looking down at what appears to me to be a deformed and ill-functioning penis has wiped me out of late.  Sorry gentlemen, I probably shouldn't have posted this, but I just needed to vent....or whine....as the case may be.  

[roadblock]

Somebody had previously posted that after an erection, they noticed differences with "deflation" after erection. I have had the same experience...basically, I seem to have problems with getting erections, keeping erections and "getting back to normal" after an erection. Still have pain, still have a mild curve but my "scar" is through the entire penis and the whole friggin thing is shrinking, most evident at rest ironically. What an awful ordeal!

I forget who originally made the post, but just wanted to give feedback...

[Davidw]

My Peyronies Disease started with a nice curve to the left and plenty of pain. After the pain subsided I started shrinking, length, girth, flacid, erect. What is odd is that now after 18 months with this I am noticing the shrinking more in the flacid state than erect. I have also developed the hourglass effect with a ever increasing indentation on the left - this is present before, during and after erections. I don't think this has stabablized yet as things are continuing to change.

[roadblock]

Davidw,

  How long did it take for your pain to subside? Mine has lingered for seven months, and I can't remember what it is like to have an erection without pain. My guess is I'll continue to shrivel up until it falls off...then the pain will hopefully go away! But seriously, my guess is that the members who experience sudden onset of curve/pain with eventual resolution and no recurrence have a much better prognosis than members like myself who have gradual onset with no specific plaque just pain/fibrosis throughout. Just my opinion. I've read that 13% have some improvement, the rest either have static or progressive disease. I think the reason for the dichotomy (sp?) is that there are two types of problems going on, injury pattern vs insidious onset pattern.

roadblock

[Davidw]

My pain lasted for about 6 to 7 months - so maybe you are almost at the end of it - so hang in there. The pain was the first thing I noticed. My wife and I were on vacation in Europe and I started to notice that I was hurting while erect, didn't think all that much of it - came home a couple weeks later and then noticed one night that things did not look right - infact they were leaning to the left...
I think I would say that mine was gradual as well, also I have been examined and no plaque was found which I still think is odd considering the indentation etc. Sometimes I feel the same way as you - it's just going to continue to shrivel up until it falls off one day!

[apopka]

For those of you who suspect you have Peyronies Disease from an injury, can you tell me the duration of time between the injury and the first symptoms?

My boyfriend has had Peyronies Disease symptoms for about the past 6 months and was formally diagnosed about 8 weeks ago.  We've been together for a year and I am having a very hard time thinking that I may have done something to him that has caused his Peyronies Disease.

Thanks!

[Old Man]

apopka:

My first bout with Peyronies Disease occurred as the result of an injury sustained during a bad sexual encounter. Severe pain was experienced immediately, but that subsided in a day or two. Bruising appeared the second day, and stayed for about a week. Bending and curving occurred about two months later. The final curve/bend was 45 degrees downward and 45 degrees to the right.

It took about a year before the Peyronies Disease stabilized and recovery started. Many treatments were undertaken, so I don't really know which if any worked. It could recovered on its own. However, the nasty stuff has come back and gone into remission several times since that time about 52 plus years ago when I was 24. My last occurence was in 1995 when I had a radical prostatectomy. VED therapy successfully made a recovery from that episode. Currently, I have no visible signs of Peyronies Disease.

Sincerely, Old Man

[apopka]

Thanks Old Man...

Is is safe to assume that severe pain is the norm when an injury that leads to Peyronies Disease occurs?  
Neither my boyfriend nor I can recall something that traumatic.  I'm trying to gauge the approximate time frame in which the injury may have occurred.  I'm feeling very rattled that I may have caused this.

[Hawk]

Apopka,

We know significant trauma can cause Peyronies Disease.  This contributes to a theory that micro trauma contributes to much of the remaining Peyronies Disease.  The truth is, no one knows.  There are men that inject ED drugs into their penis for years with no problem.  I consider that more than micro trauma.  If the genetics are there, the needed micro trauma could just be having enjoyable sex.  Truth is, if the genetics are there, it probably does not always even require micro trauma.  

Don't waste time beating yourself up over nothing.  Unless you can trace it to an obviously violent act committed during a rape of an unwilling victim, it isn't worth the worry.  Most men I know, are much more interested in love and support than they are in scapegoats.

[Old Man]

apopka:

No, severe pain is not always associated with an injury to the penis. Sometimes slight pain is present, sometimes severe, and sometimes there is no pain present.

Each case is different from each other. As Hawk says, do not place too much stock in whether or not pain is present or for that matter, any other situation that you think may have caused the Peyronies Disease.

Concentrate on thinking positively about the situation. Your support, care and loving kindness is of utmost importance to him at this time. Together, you should endeavor to see each other through a very difficult and trying time. That will mean more to him and anything else now.

Sincerely, Old Man

[SteveW]

I'm feeling very rattled that I may have caused this.

Well, don't.  You may very well have had absolutely nothing to do with his condition.  We often have no idea what brings on Peyronies Disease.  Sometimes injury, other times not.  Genetics?  Cause and effect can be separated by many years.  What did it?  Sadly, we usually don't know.

If you really, honestly want to know the best course of action for you, apopka?  Support him.  Love him.  Give him all the pleasure and receive all the pleasure you can offer each other.  Believe me, I know personally, that a supportive and loving partner can, does and will make all the difference in the world.  

[Joshua]

I have a comment that I would like for others to chime in on. My progression of plaque nodules has been very active.. I originally had several plaques and a little almost stringy plaque on the top. I had a rock solid BB in the middle. My plaque has been very active almost coming and going. Currently I have almost no detectable plaque and pray daily it stays that way. However, a few weeks ago I had a small piece reappear and then went away again two weeks later. Has anyone else had "active" plaque.

[Davidw]

Joshua,
I never really put this altogether until reading your post. Prior to my Peyronies Disease showing up I had several BB sized bumps on the bottom side and I never knew what they were - they  were hard as rocks and looked like pimples to me. I don't even remember when they went away and I have not noticed them since the onset of Peyronies Disease - The last uro I went to did not detect any placque or nudules etc. Looking back I guess they had something to do with me getting Peyronies Disease. In reading and learning on this site I have always thought it strange that while I have Peyronies Disease I have no visible placque.

DavidW

[ofsho]

My Peyronies Disease started as a small bead abt 3 mm in the middle,upper side. Its nearly three and a half years now and has remained the same, it was always hard from the time I noticed it,I assume its calcified.There is no curvature or pain. I went to an uro,who gave me a painful injection and never went back,the lotion 'Thrombophob' he gave me didnt really work.I have done nothing since, but of course Iam worried of progression,And am thinking of ionto,perhaps ALC and Vitamin E.
I have to mention Iam in India and am asian/indian. Verapmil or even gamma E for that matter is not available here,but surprisingly there is a physio who will administer ionto.There was an interesting study how ionto works irrespective of the medication in peyronniesassoc.org - has anybody tried this?
could some one give me an idea of the risk of prorogression? Could I buy verapmil/dexamethazone and ALC, gamma E on line?
thank u

[Hawk]

Welcome Ofsho,

Thank you for supporting the forum by posting.  

I consider "Puritan Pride" about the best and cheapest source of supplements.  Believe me, I have compared dozens of sources and compared them on spread sheets. They don't have every product in the world but what they have is at a very good price.  Depending on the sale, sometimes it is better than others, but the are running their best prices from now until some time in June.  (I have been a customer for years and have no interest in this or any other company).  Here is the link www.puritan.com

If I could get no other treatment, I would consider Acetyl L-carnitine, Vitamin E, heat, and a Vacuum erection device (VED).  Maybe an anti-inflammatory like ibuprofen if you have pain or sense that the Peyronies Disease is active.  

CAUTION: Do not exceed the directions on the bottle for ibuprofen.
Also be careful with heat and read the most recent posts on hyperthermia under the "Alternative Treatments" topic.

I have no medical background.  This is only what I would try to do for myself.

[ofsho]

Thank you hawk, This forum has been very helpful to me, I've read many of the posts and certainly figuring out some things have made me less anxious.Thanks all.
I will check out puritan.com but so far none of the companies I tried on line deliver in India so i have to find a means of getting it shipped. I have found a physio who administers ionto and am eager to try it - dont you recomend that? also I have a question - verapmil and dexamethazone injections are available here, can these vials be extracted and applied via ionto?

[Hawk]

Try posting your question about Verapamil under the Verapamil topic.  Hopefully someone with more knowledge of verapamil and iontophoresis will answer.

[SteveW]

Guys...I am experiencing pain again.  I was diagnosed last summer, went through the VI (10 shots) and the massive mass seemed stable, I thought.  It covers virtually the entire top side of my penis (90 degree bend) from the base narrowing to a point just behind the head.  The rough, irregular shape seems to change but overall, has been stable.  The VI reduced the original bend by some 10 degrees or so and I thought, "well, I'm just gonna' have to live with a deformed dick."  I AM NOT (at least at this stage) going under the knife.  

Of late, I am experiencing pain again when erect.  Not severe, but pronounced and certainly does bring a halt to the festivities.  

Any one else have pain reappear after stabilization?

[Hawk]

SteveW,

I think if you look under "polls" at the stabilization poll, that you will see many that progressed after an initial stabilization.  Progression means acute stage Peyronies Disease and most in that group will experience some pain even if is only mild discomfort.

If you have not tried 2500 mg of Acetyl L-Carnitine in split doses, you should give it a try.  I am positive that ALC at least gets rid of the pain in some cases.  I suspect it does more.  It turned my minor pain on and off at least 3 times in direct conjunction with taking ALC or Stopping ALC.

[ComeBacKid]

SteveW,

Also soon after taking L- Carnitine my pain totally went away.  The problem is I'm on so many things now I don't know what is working so I just keep doing all of them.  The only reason I pursued so many treatments is cause I got extreme penis shrinkage in the flaccid state and went off the deep end with medicines.  I'm doing TV 2 times per day, IONO treatments everyday(switching the polarity for a total treatment time of 40 minutes) 800 IU's of vitamin E, Aceytl L Carnitine, and MSM daily.

ComeBackid

[roadblock]

Previously I had posted many inquiries into Peyronies Disease progression, so I figured I would post an update on my progress so it might possibly benefit someone else out there with similar questions.

At this point, 9 months into this latest bout, my pain has remained but did fluctuate within a range of 1/10 and 4/10. Over the last month I have spent much more time around 1/10 than 4/10 and it seems to be heading towards totally disappearing.

The unfortunate part in this is that as the pain disappears, the scar is maturing and it has resulted in a loss of length and girth in both the flaccid and erect state. Oh well...still prefer this over the pain stage, and since it's pretty much inevitable that this is the course of the disease I'm glad to be where I'm at. My curve has lessened, but this is due to a phenomenon I had put forth previously that some curves straightening might in fact be due to a compensatory curve. In my case, straightening of curve plus loss of length equals some scar on the opposite side of the curve. Again...oh well, guess I'll just let it work for me while it will!

ED has almost totally disappeared, leading me to believe it was mostly psychologically driven. I still use Yohimbe for the rare occasion I have intercourse and have had good results. But honestly, I get good nocturnal erections and can get a full erection pretty easily now so I count myself as lucky.

Current oral regimen includes Vitamin E 400mg twice a day, Acetly-l-carnitine 1g twice a day, Baikal Skullcap once a day (contains wogonin), PABA 12g divided into four doses, and L-arginine 1g three times a day.

I also take 400mg Vitamin D once a day (see the Vitamin D discussion in other discussion threads for the reason why). Vitamin D can be toxic so I wouldn't go too nuts with it.

I'm hoping still to find a physician to prescribe me Pentox (aka Trental)...this seems to be one of the most promising drugs out there currently especially for individuals early in the disease progression and for those interested in halting progression. Hopefully the research being done will continue to demonstrate this trend.

Again, just wanted to update! Hope everyone is getting along ok with this stuff...

roadblock

[ComeBacKid]

Guys,

Recently I noticed as many of you have heard me complain about that my penis was shrinking in the flaccid state.  Perhaps it isnt really shrinking, but the plaque is making the blood arteries into my penis more constricted.  I say this because when I apply the topical verapamil, it is a blood vessel dialater, and my penis seems to hang bigger in the flaccid state, my erections are the same size though.  

Seems to me that this scar contraction isn't to understood, perhaps the original plaque blocks off the blood vessels allowing less bloodflow into the flaccid penis, and this causes the scar to contract, versus the scar just contracting naturally on its own over time.  

Another question for thought I've had is my scar wrapped around the corpus Cavernosum, and as the scar contracts keeping the corpus cavernosum from expanding, or is the scar changing the corpus cavernosum tissue into inelastic fibrous tissue and this the reason for the loss in size.  

ComeBackid

[SteveW]

Well that may be the $100,000 question.  In my humble opinion, if your plaque is more "plate" or "mass" like, rather than the "nodules" many men have, then the mass or plate is occupying space and constricting what would normally be loose skin when you are flacid.  Calcified plaque "bonds" to you and the area it occupies has to come from somewhere.  That IMHO is what causes the wasting and hourglass effect many of us suffer from.  From what I have been able to read, this doesn't happen with men who are affected with a more nodule like formation, but can be severe in men with large masses which cover a larger area.  The problem is...who knows.  We seem to know a whole lot more than the docs do.

[Hawk]

ComeBackid,

My opinion:  If you get a straight full length and girth erection then you simply have no scar tissue on the tunica because scar tissue cannot stretch to normal dimensions.

As I recall, taking a cold plunge after a sauna made the penis shrivel up to the extreme.  In this hyper-flaccid state it felt more firm since the tunica was contracted so tight and the tunica itself would be thicker in a contracted state.  I suspect that your reduced flaccid state is because you are "shriveled up, cold-water flaccid"  meaning less than normal blood flow for a typical flaccid state but not scar tissue.

If all the above is true then why are you in a hyper-flaccid state?  Possibly either nerve or vascular interference from some source that is causing less than normal blood fill when not aroused.  once aroused functioning, size, and erection are normal.

[Liam]

SteveW,  
I was stable for two months without pain.  I now have pain, but, I may be improving.  I have been using l-arginine, l-carnitine, citruline, ginko biloba, Korean red ginseng and yohimbe.  I am also applying heat 30 minutes, 3 times a week followed by using my VED.  I have noticed regaining some length.  I think the pain maybe due to positive changes in the plaque.  Time will tell.

[SteveW]

I think the pain maybe due to positive changes in the plaque.  Time will tell.

What actual changes have you confirmed in the size and shape of your plaque?  And is it calcified?  

[Liam]

I cannot confirm changes.  The plaque on the dorsal side of the base seems softer.  It also seems to be segmented or having discrete parts.  Before, it was like a solid mass that almost encircled the base.

Could I be imagining?  Possibly.  But, I have felt some hope.  

Also, that "turtle effect" is much improved.  That is uncomfortable as well as disturbing.


Title courtesy of David Bowie