Progression of Peyronie's Disease

[Old Man]

Hawk:

Why wait any longer, click the mouse!!!!


Old Man

[didi20031]

Hm, I remember I guy who posted similar comments some 2 or 3 months ago...

didi

[ocelot556]

It seems like McBaba is a reincarnation of that guy that kept calling us wimps for not forming an advocation group like prostate and breast cancer groups have.

Don't feed the trolls. Your comments, especially negative ones, are what he's after. I hope Hawk deletes all this counter-productive posting.

[RichB]

Well, went back to the uro last monday. He said he didn't believe I had any permanent physical problem (such as Peyronie's) causing my pain or ED.

He believes that I had an infection, which was cured when I took cipro, but the inflammation stayed because that part of my body is constantly in use. It made a lot of sense. He said the inflammation can stay for a long time, possibly months. Since I have yet to try completely stopping my sexual activity for more than a couple of days I will try and stop things for a good week or two and see how things go. I told the doc about the pain actually leaving during erection, and he said that sounds a lot like inflammation. Inflammation can do some weird things, so I am going to wait to see what is up in the coming weeks/months so I can find out if I need to put this behind me.

Things still don't feel the same sexually, but everything is pretty much back up to par in that department anyway. I am hoping things return to 100% normalcy in some amount of time. If not I could just go out and buy some horny goat weed or something.

[newguy]

Well, went back to the uro last monday. He said he didn't believe I had any permanent physical problem (such as Peyronie's) causing my pain or ED.

He believes that I had an infection, which was cured when I took cipro, but the inflammation stayed because that part of my body is constantly in use. It made a lot of sense. He said the inflammation can stay for a long time, possibly months. Since I have yet to try completely stopping my sexual activity for more than a couple of days I will try and stop things for a good week or two and see how things go.

I'd definitely say that sexuality activity in the early days of peyronies can be a bad idea. Anything that causes more pain and inflammation is surely a no-no. One area I'm unsure of though is in maintaining regular erections. It appears to be a given that achieving regular erections is a good idea for penile health, but if pain is present too, I wonder if the regular erections can actually contribution to the continuation of inflammation. Conversely, maybe it actually helps to get blood to the area, stretch developing scar tissue and improve the condition. It's something of a maze and hard to know how to approach as there arenot many tried and tested paths or comparisons that can be made.

As you state, your condition may not be peyronies, and it's still early days. If your shoes, I'd get on trental, vit e , vit d and ALC though. Better safe than sorry.

Again, it'd be good to get feedback on my thought in paragraph one from other members.

[Believer]

I wonder if I'm the only one who's Peyronies Disease keeps playing games. Over the course of the last 3.5 years, it has been shifting from acute to chronic and back again several times. However, during the last 6 months, I barely had a chance to breathe. Every two weeks I am in pain. Last two weeks I was enjoying peace, but yesterday I woke up with pain emanating from one of my old plaques. My plaque runs along the shaft, and splits right and left near the head, wrapping around the shaft. It looks like this: ------{

The longer I wait, the more severe my Peyronies Disease gets. Not one doctor has a remedy for the pain. The inflammation usually lasts for two weeks at least. Today I was barely able to walk. It's a miserable feeling.

I've spent hundreds of $ on co-pays and deductibles to see doctors that can't do anything. At this point, if I consider surgery, grafting is the only possibility and with the complexity of my plaque it seems riskier than in most cases, where the plaque is a mere localized "pea".

This is frustrating. Does anyone share my experience?

P.S. Please do not suggest Pentox - I'm on it already.

[ocelot556]

Are you on Pentox?

I'm having the same problem of flareups, though mine are 1-2 days a month or thereabouts. Pentox really helps mitigate the pain. I'd say 8 times out of 10 a Pentox allays the pain within an hour, and at least helps lessen it if I'm left still hurting.

My uro was reluctant to write me an Rx for Pentox, but after a few visits to build a rapport with him I hit him with printouts of the studies listed here -- he heard me out after the second visit - but on the third, when I pressed the issue, he agreed that it could help.

[gerMike]

Am I the only one?

I'm on all Herbs/Meds mentioned in the forum (ALC, Potaba, VitE, VitD, K2, L-Arginine, Pentox, ...) and still getting worse and worse month after month. Even the VED seems to make things worse in my case. First there was only one nodule on top 9 years before, now my whole penis is affected. A string of nodules runs from the top to the base of the penis and plaque is spreading out to the sides. It even extended into the body and made my corporas smaller. The worst thing is that the tunica seems to more and more convert into unelastic tissue. Even the last healthy areas are now affected and begin to contract. The penis feels like it got a "rough" surface. I guess its the scaring process that made the smooth tunica into this. I'm not sure what to do in my case. Erections get more and more difficult.

My problem is not a bend my problem is the shrinkage and the overall conversion of the tunica into unelastic tissue. In flaccid state my penis contracts a lot which is kind of stressing me. The penis feels hard in flaccid state instead soft. After a VED session it doesnt take long and the penis contracts again. I have pain even in flaccid state and that after 9 years into this hell of a disease!

I'm at a point now where surgery seems the only way to get any better. Grafting surgery seems to be problematic when large areas of the tunica have to be cut out and I can't find anyone who made it with large grafts that would cover 2/3 of the penis. The results of such surgery would be interesting. An implant may be a solution for me.

In my opinion the Peyronies Disease progressed because I was long time able to have very strong erections. I'm 33 years old and that could have contributed to my worsening. Is there anybody who has similar experiences? Especially the contracting/scaring of the tunica along the whole penis?

[Tim468]

Believer,

In this case, I am glad I do NOT feel your pain. But I can imagine it, and it makes me sad to hear of your suffering.

It makes me wonder if there is another "axis" that is involved in your Peyronie's. It seems progressive and fairly aggresive - and also it seems to be associated with a LOT of pain, which is unusual, IMO. Pain is seen early on sometimes, and for me, there is pain with very hard erections. But it seems like there is a very strong inflammatory component that you get that others do not get (at least not for so long).

That, in turn, makes me wonder if you might be "different" somehow. Could you have a rheumatologic disorder that creates a far higher degree of inflammation than oterhs get. If so, that might suggest a different treatmnet course for you to take. For instance, colchicine, which is sometimes used in rheumatologic disorders has been shown to help some men with Peyronie's. Like many treatments, it doesn't help everyone, and so it is a "second choice" for many urologists. But it might be of help to you. Similarly, anti-autoimmune drugs might be worth using.

Perhaps it would be worth while for you to see a rheumatologist. There are HLA type II antigens (HLA-DQ5) associated with Peyronie's (though not terribly strongly), and this might be worth telling the rheumatologist about, and then testing for specifically. Here is a reference from google searching:

http://www.medscape.com/medline/abstract/8808864

It might be a long-shot, but what you are going through no man should have to suffer through at all.

Tim

[Tim468]

gerMike,

My disease is sort of like yours, but without pain (or very much) and I am able to get very functional erections (better) with Cialis.

I may misunderstand, or you may have mistyped.. you said:

"the Peyronies Disease progressed because I was long time able to have very strong erections."

Did you mean ".. I was long time UNable to have very strong erections."??

Having strong erections seems usually to help protect against injury to the penis.

If you search my posts you can find a reference that includes a picture of a major reconstruction of a densely fibrotic penis - that includes an implant. It sounds like you ahve progressive generalized fibrosis - have you had your testosterone level checked, and corrected if it is low?

Tim

[gerMike]

I was able to have strong erections a long time while having this disease. It was like everytime I had a strong erection that I noticed new nodules or new changes in the penis 2-3 days after that. I suppose it was pressing new blood into the diseased area that then inflamed the area again and formed new nodules.

Earlier the tunica was healthy even with the nodules here and there. But recently there is in fact something like generalized fibrosis of the penis. That would explain it. My testostereon levels are kind of low (248ng/dl measured last month). Though my doc said its in the limits and I need no help   For quite some time I suspected that the low testos does make the overall condition even worse.

Btw. I have pain in my left leg (like burning from time to time) and penis in flaccid state. Maybe its some autoimmune symptome like the one you mentioned for Believer.

Do you think raisening my testos level can help reduce the fibrosis?

[jackp]

gerMike
Your doctor is wrong your testosterone is LOW. You need the following checked.
Testosterone Total
Testosterone Free
Testosterone, Bioavailable
SHBG
Albumin, Serum
E2 Sensitive for Males

Your Free and Bioavailable should be at least 65% of the range. They are more important than the Total. According to my doctor who is a Male Sexual Function Specialist. Doctors that only check total are not up on proper testosterone therapy. Always get a copy of the lab report for yourself.

In my case getting the testosterone level up helped libido, etc it did not help fibrosis.

Jackp

[newguy]

Your case highlights once again how this disease can be very complex and defy generally accepted idea. In a post earlier, I pondered whether hard erections are always a positive thing during stages of inflammation. My belief is that generally speaking they are, and you you are un just unlucky, but who knows.

It sounds to me that your case possibly extends beyond typical peyronies inflammation, so it'd no doubt difficult to get the inflammation under control. It might be worth going for a blood test, to try to gain insights into your condition or see if there is anything unusual.

[gerMike]

In my last blood test the CK (Creatinkinase) was at 445 instead max 190. This suggests some sort of muscle degradation somewhere in the body (hopefully no smooth muscle!). The CK value was also around 380 some months ago. The other deviation from normal was found in my TSH value that was at 5. But I doubt there is any relation. Vitamin D levels were not checked but will be checked at 15. April. All other blood values were in the range of normal limits beside the Testos mentioned and the stress hormone Cortisol that was over max. With this disease it gets sometimes difficult to control the stress.

[Tim468]

Could be autoimmune disease (or rheumatologic disorder), meaning that the penis is but one symptom of the problem. I'd dig deeper - perhaps that CPK is quite important. Treating T might help too, though the 200's should be good enough to prevent fibrosis (I base that statement on very little data - one animal study that castrated something (rats? rabbits?) and then saw that there was generalized corporal fibrosis, that was prevented (and to an extent reversed) by testosterone therapy.

Tim

[mo]

Thousands of members here got worse while taking ALC!  Some taking pretty high doses of ALC.  

Clearly you are uniformed and enjoy throwing out "facts" you know nothing about, or you are just a prankster one mouse click from being put out of our misery.

Modified..., see above post of mine

[newguy]

Logic alone disproves the statement that thousands of people here have got worse taking ALC. Furthermore, you appear to be infering that ALC is causing the worsening of the condition. Agaiin there is no evidence whatsoever to support that. If you are not suggesting that, then what are you actually trying to say? It's time to stop trolling the board I think. It doesn't help anyone.

[mo]

Thousands of members here got worse while taking ALC!  Some taking pretty high doses of ALC.  

Clearly you are uniformed and enjoy throwing out "facts" you know nothing about, or you are just a prankster one mouse click from being put out of our misery.

"I'm on all Herbs/Meds mentioned in the forum (ALC, Potaba, VitE, VitD, K2, L-Arginine, Pentox, ...) and still getting worse and worse month after month"...

Above posted by gerMike on March 31, 2009.  
...................

"PLC and ALC did not help me (I got worse while doing both in high doses)"

Above posted by Tim468 on January 31, 2008  
...................

"There are likely hundreds of posts dealing with the terms ALC or Acetyl L-Carnatine, or Carnatine.  There have been no accounts of any correction of deformity."

Above quote is by Hawk posted on March 24, 2009 in Oral Treatments-Vitamins, Prescriptions, Herbs, Supplements


There is credence to Baba's statement that people do get worse while taking (ALC) even in high dose.  Hawk you own posts back him up.  
I don't have time to key word search (worse, ALC) to see if  Baba's claim, "thousands have stated they got worse." is more accurate than your claim, "hundreds of posters get no benefit."   But I would say "a great deal" of people here get worse taking (ALC).  And "here" i.e. this board is just a small sampling of the millions of people with peyronies.  

The new members here seem to be taking a different approach to addressing peyronies and that includes speaking the brutal truth sometimes.  Respect others statements Hawk and careful with that dictator/administrator attitude.

[mo]

Logic alone disproves the statement that thousands of people here have got worse taking ALC. Furthermore, you appear to be infering that ALC is causing the worsening of the condition. Agaiin there is no evidence whatsoever to support that. If you are not suggesting that, then what are you actually trying to say? It's time to stop trolling the board I think. It doesn't help anyone.

Newguy wrote, "you appear to be infering that ALC is causing the worsening of the condition."  

Dear Newguy, I am rightly stating that "many people do not improve but in fact get worse" while taking ALC.  Not stating that ALC causes things to get worse, but it just don't help at all.  Brutal truth backed up by the posters I quoted.

I would say don't waste your money on ALC.  Sadly I offer no alternative to it.  

[jackp]

Tim
"one animal study that castrated something (rats? rabbits?) and then saw that there was generalized corporal fibrosis, that was prevented (and to an extent reversed) by testosterone therapy."

I humbly disagree. A human study "me". I was on testosterone therapy before and at the onset of corporal fibrosis. I was on TRT long before the corporal fibrosis and even more after the diagnosis. TRT was a great help with a lot of things but not corporal fibrosis even at 2cc every 10 days. I'm no doctor but just my story.

Jackp

[Believer]

Tim,

Thanks for the suggestion, I'll see a rheumatologist asap.

I'm afraid to ultimately suffer the same outcome as gerMike. Like him, I will also probably need an unusually large graft if things further deteriorate. This is rather frightening... Perhaps Peyronies Disease is different in younger patients like myself.

Believer

[Tim468]

jackP,

The study in question castrated the animals and documented that they showed a development of fibrosis. Since more than just testosterone is produced in the testes, they replaced the testosterone to see if that could prevent the fibrosis, and it did. That suggests that of all the different things produced in the testes, it was the testosterone that was the critical factor in the development of fibrosis. They then surmised that testosterone could "treat" the fibrosis.

The problem is that the use of exogenous testosterone was given from the start for the group of rabbits that were castrated and treated. Thus, the testosterone was used preventively, not in a rescue format. The other part of this is that the loss of testosterone in the castrated rabbits was obviously complete and not partial. Thus, the paper is tantalizing but incomplete. A better study would have treated rabbits after the time point that demonstrated fibrosis (in a separate group, since checking the tunica means killing the animal), and showing that there was less fibrosis in that group.

Tim

[RichB]

Does Peyronies Disease commonly cause irregularities in the flaccid penis as well?

[UK]

Did with me, pool queue effect at end, curvature whilst flaccid, pinched appearance where plaque is, some shrinkage, change in hanging angle. One urologist discounted this saying that Peyronie's and it's treatment was only concerned with the physiology of the erect penis, and another more sympathetic urologist described the flaccid symptoms as "classic" Peyronies. However if you resolve the symptoms whilst erect I'm sure most if not all the flaccid ones would disappear too.

[Hawk]

The new members here seem to be taking a different approach to addressing peyronies and that includes speaking the brutal truth sometimes.  Respect others statements Hawk and careful with that dictator/administrator attitude.

Mo,
You are under Advisory Board consideration for being banned as we speak so you may never read this post.  At any rate I am going to make this short and to the point.  A membership vote would have you bounced out of here with overwhelming support so there is nothing dictatorial about it.  Thousands of members appreciate and depend on the PDS.  Clearly you do not so banning you will do you and us a favor.

[despise]

okkkk one big question. we talked about this before and well its my big obviouse symptom so i just want to see how many people also have this symptom. for the first year or two of peyronies was your penis swollen. bigger then normal flacid and painful. i also want to ask if anyone had any differences urinating. after ejaculating etc..  

[UK]

One thing I like to throw out there is that there seems to be a prevalance of prostatitis type symptoms with Peyronie's disease suffererers. Whilst some maybe typical Prostatitis as a result of bacterial inflammation I suspect, and I'm not a doctor, that a lot are a result of the stress of the Peyronie's situation. The stress resulting in disfunction of the pelvic muscles and symptoms like painful ejaculation, painful urination etc.. With me, I'm now thinking that through my naivety the curvature which also displayed whilst flaccid, would effect the urine stream and ejaculations, resulting in a reluctance and fear when needing to relieve as a result of the anticipated pain. When in reality Peyronie's should not effect urine flow. It then becomes pain due to the disfunction and worse with the progress of time - a viscious circle. So that could be the connection between Peyronie's and CPPS (chronic pelvic pain syndrome). I'm a stressed person irrespective of the Peyronie's but I'm sure it has compounded my problems hugely.
I've had the scans, MRI, antibiotics, cystoscopy and all that is clear apart from the Peyronie's scar.  

[didi20031]

UK,

I think you are absolutely right! I developed typical prostatitis symptoms too when my peyronies started. I didn't know anything about CPPS at the time, but when I finally found out about it, I started to "listen" to what my body was telling me. I noticed that I was really stressed and in panic because of all the strange symptoms I had. I was cramped no matter what I was doing. When I had realized that I tried to relax my pelvic floor whenever I could and a lot of my symptoms vanished.
I think that there is a connection between the emotional stress caused by peyronies disease and CPPS symptoms!

Didi

[ComeBacKid]

Been thinking about this in the past few days. As one urologist who I talked to told me that my peyronies is not progressing, but healing.  As the damaged tissue hardens that is the bodies mechanism for trying to heal the tissue, hence you get shrinking, hardening, and bending as in my case.  Progression to me would mean spreading, although there is no way to measure this with no doppler ultra sound other than observation...

Comebackid

[newguy]

Comeback Kid - The inflammation stage is where the real damage is done. The scar tissue forming is what occurs when the inflammation subsides, and is when you pretty much become aware of what you're dealing with. Of course many people find themselves in seemingly endless cycles of inflammation and scarring hence why many are on elaborate concoctions to keep inflammation at may, and other techniques to re shape scars that may have formed.

I find myself in limbo at the moment with the scarring and  healing progress at the forefront of my mind. I've suffered from peyronie's for about 14 years, but when I found this forum, used the VED and concentrated on good food and exercise there was definitely realimprovement. Unfortunately, a year ago I injured myself using a traction device (somehow??) and pain was present for many months. This scared me to death, but it seemed to subside eventually. Now however pain is back in the same area, so it makes me think that I have done more damage than I thought and I'm keeping a keen eye on any changes that occur. I'm hoping that a worsening of the situation isn't inevitable, but there's no way to dress up inflammation in a good light.

I'm worried that all of my progress could be reversed or worsened, and due to this pain, I keep having to put back in my mind the date when I think I'll be "out of the woods". It's disheartening and I'm avoiding the VED and traction device for now because I don't want to rock the boat. Hence no actual progress is possible right now. Pentox, vitamins, healthy eating and regular exercise are my current weapons of choice. That and regular erections to get blood into, and stretch out, the penis.

[newguy]

(continued from previous message)

So I find myself wondering what can I do during this inflammation and potential scaring process, other than what I'm already doing to limit any future damage. As already stated, part of me thinks, avoid ALL devices until the pain is unnoticable and then tentatively start with the VED. Another part of me see's reports of increased flacid length with light traction, and thinks, maybe if i do very light tractions it could limit the severity of the possible developing scar tissue.. Another poart of me think's that's a bad idea, or that VED use is safer and using that in a very limited and controlled manner could help me right now. There's no right or wrong answer and that's what's so frustrating.

There is currently no change in curvature since the pain started, so thats positive, but I do have the pain so I really want to be proactive if I do notice any physical changes at all. I feel that the least explored area on this site is what action to take during this stage of limbo. How to make the best of that situation before the scar has formed. It's a tough call, but in all likelyhood I'm going to have to play 'wait and see', then consider these options should I notice any physical changes over the coming months.  

[ggg953]

Was wondering if anyone could way in on something: When I was diagnosed with Peyronies Disease, Dr. Gelbard told me to stop smoking and I did, immediately. Recently, I have started using an E-cigarette http://en.wikipedia.org/wiki/E-cigarette. It doesn't smoke and vaporizes Nicotine. Anyone know how Nicotine affects Peyronie's if not smoked???

[Iceman]

im a little confused - i have been pain free for almost 6 months and now almost on a daily basis I can feel a little tiny nodule on the right hand side of my shaft causing a pinched effect - what are the causes of this pain if i have been pain free - i am taking all the meds pentox etc plus ved usage - i feel that each time i use the ved there is a bit of pain - could this be a factor- what else are there??? - why is there pain one day and then pain free for say 2 days then pain again - help!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

also has anyone seen this: http://vids.myspace.com/index.cfm?fuseaction=vids.individual&VideoID=33993662

[newguy]

Iceman - There's often no rhyme or reason to how these things pan out. If you feel pain with the VED I personally would give it a miss until the time resolved. Others may disgree though. There's no firm right or wrong answer for how to proceed. Be hankful that you're using pentox and other meds, because at least you're doing all that you can to minimise any negatives. As for the video, I get tired of these traction devices claiming to "cure" peyronies. I do believe that used in a very careful and gentle manner they can be useful, but it's certainly not a cure. Their desire to gain custom leads to such lofty claims.

ggg953 - First of all, congratulations for stopping smoking. It's a very unhealthy and damaging habit. Nicotene alone can cause problems, but I wouldn't like to make a statement as to whether or not it will worsen your situation. Nicotine can actually promote the growth of new blood vessels so although it's an addictive drug, if vaporised, I wouldn't want to state that it's entirely negative. I'd say that if smoked it's very bad as new blood vesell growth may promote tumor growth.  

[Exile999]

so basically there has been this vein like lump on the right side. When I do press on it, it seems like a vein. After intercourse I would say, the area becomes hardened, but then again the entire penis gets kinda hardened as well. I have made posts like this previously in this forum. A lot of people simply told me it was a minor problem and I should go on away with my happy life because after a few weeks it should disappear. However, in any case the vein-ish lump has definitely worsened (as in gotten bigger) and yes, there is a bend/curve when it is erect towards the left. Does anyone think this is peyronie's?    

[LWillisjr]

Exile999,
Is the lump on the same side as the curve?  For example is the lump on say the left side, and is then bend/curve now also to the left?

[Exile999]

the lump is on the right side, the bend is towards the left

[Starting2looseHope]

I am a 22 year old male. Recently i have noticed several things wrong with my penis, in the flaccid, semi flaccid and somewhat during a full erection. First off I have been experience pain.discomfort on the left side of my penis which primarily resides on the top left and from what i feel at the very bottom (actually into my testicular region). When my penis is flaccid i notice it hangs/twist to the left more then what it used to and the left side at times feel "hard". Also my testicles seem to have taken on a new shape when my testicular sack shrinks. The left teste seems to be in front of the right, causing my testicles to look out of line compared to my penis at times. In addition, at the top of my penis right under the head on the left side there seems to be a knot/dent, very small in nature in the flaccid state. In the semi harden state is what concerns me most. The left side is no longer as "full" as the right and takes on a curved state to the left about half way up. A state to which i could not insert my penis into a vagina comfortably. The decrease in thickness takes place about a third of the way up. In the semi-flaccid state the dent/knot is more recognizable. Also in the semi-flaccid state on the right side (opposite to the bending) there is a vein like structure that is not hard but causes my uretha to have lumps that you can notice from the side if you look hard enough and from the touch. It feels like a small piece of thread tide across my uretha. Does this have anything to do with the bending? Finally when i am fully erect, and i do mean fully erect...everything seems to be normal.  The dent is most obvious when fully erect and does cause my penis head to slant/twist to the left a little. Also it feels like the bottom left side of my penis stick out a lil more at the base. And I can tell that the left side is not quite as full causing a slight bending/twisting affect but it is definitely bearable, its one of those things where nobody would notice a difference atleast my girlfriend claims not to during sex. But i am very worried about the future after reading things online. I went to a urolgist how told me to take vitamin 8 400 u 2x a day. Which i am . But is the bending during the semi state a prelude to what is to come in the future for my fully erect penis. If my fully erect penis mirrored my semi erect penis i would not be able to have sex! Can someone give me a lil insight to what might be going on. My dr. said he was not quite sure after a brief look and said he barely felt anything but it might peyronie I almost want to show him pictures? can i do that?

[Believer]

Starting2looseHope:

Don't delay - see an expert urologist - peyroniesassociation.org/x.php?p=Physician_Finder

When you go for the appointment, bring pictures. Also, detail your symptoms.

If diagnosed with Peyronies Disease, you will have several treatment options. The earlier you start - the better.

[Starting2looseHope]

Believer, Thanks for the website, however the only doctor close to me is backed up til july. so i opted to see a different doctor, one that has been in the practice for a while. He said i am in the early stages on peyronies since its mainly only shows when my erection is weak of only half erect. He told me to stop taking vitamin E 400 U two times a day due to the heart risk it has. He prescribed me colchicine .6 mg to take 3 times a day. He also said that after a week or two i can start taking IB Profen or Motrin with the colchicine. My question is has anyone taken this before and seen success? Should i stop taking the vitamin E like he says or should i take it also with the colchicine. He switched me to a multi vitamin that contains 60 u of vitamin E. Should i go ahead and start the motrin also now? Any ideas? Please help?...

[cowboyfood]

Thanks again for everyone's posts, I saw a urologist today and he confirmed Peyronie's D.

However, and like someone else on the board, I'm feeling much better after my appointment.

I'll post my detailed history later in the appropriate section, but here's is a synopsis:

Last December 2008, I noticed a dent on the right side towards the top near the head, which caused the last couple of inches to bend upward somewhat...maybe 15 degrees?

It's still looks about the same.

However, in the meantime I found this board and started my research.  I must admit, the board scared me to death...not at first, but my anxiety grew and grew.  But, I began to take Vit E (GNC Isomer) and L-Arginine.  

Anyway, my mind was very mixed up the last couple of weeks b/c of my thoughts about what I had, etc... It got to the point I couldn't get aroused.

Because of this forum, I anticipated that the uro I saw today may not be "up to speed" with this board, so I brought the info suggested...see child's board.

Ironically, and thankfully, one of the board's members called me today with a referral to a doctor in Atlanta that does a lot of work in the Peyronies Disease area; but, I had an appointment with a Dr. Schoborg already scheduled for this afternoon.  

I saw Dr. Schoborg and he diagnosed me w/ Peyronies Disease immediately.  He felt some scar tissue near the place where I have the dent.  He was very honest and truthful...he did say he'd seen "hundreds" of guys with Peyronies Disease (so, we're not alone).  However, he said there was not much successful treatment for the condition.  He said since I don't have any pain or severe bending, to just watch it.  

He said he had done everything from surgery, tv, injections, vitamin E, potaba, etc. and he didn't really notice much of a pattern of success, except that one guy was "cured" w/ potaba...but, he felt like most patients just quit taking it b/c it required 6 pills a day and he thinks most guys just quit.

But, I showed him Dr. Lue's article about Pentox, and he immediately said he knew of Dr. Lue and respected him very much.  He said he had never prescribed Pentox and did not feel comfortable doing so; but, he referred my to another Doctor at Emory who he said is doing a lot of work in this area, and is more "aggressive" in his approach to Peyronies Disease.  He referred me to Dr. Chad Ritenour, and said he would more than likely feel comfortable prescribing the Pentox.

Ironically, this is the same Dr. that one of our board members referred me to earlier in the day.  So, I'll go ahead and make an appointment to see him.

So, at this point I feel pretty blessed because the shape is not bad at all, at this point I have not experienced any pain, and it looks almost exactly like it did over 4 months ago.

The palpable test was more "rigourous" than I expected, he really pushed and squeezed.  He felt it right away in the spot.

I'll update later, or keep asking questions.

-Cowboyfood

[Starting2looseHope]

How much vitamin E and L-arginine take? I currently take 800 u a day of vitamin e and .6mg of colchicine...think it would be smart to add the l'arginine also?

[didi20031]

after 2 months of hope (no pain, good erections, one plaque that seemed nearly vanished) things start getting worse again. pain is back and the head of my penis starts bending to the left (I had no bend at all until now).  

I have been taking pentox for eight months now and I thought it worked... I think I will stop taking it. I don't want to take pills for the rest of my life. It doesn't make any sense. I have to realise now that I am not one of the guys who get better and not even one of those with stable peyronies.

I am really frustrated!!!

[cowboyfood]

sorry to here about your frustration!

but, and I may be wrong, your "shape" is fine, regardless of the slight bend, so maybe that's okay.

I feel your frustration though.

[newguy]

didi20031 - I'm very sorry to hear about these developments. In your shoes I would stay on the pentox for now, even if it isn't working quite how you'd hoped. We can be all that certain that it isn't having a negative impact, but it likely is having some positive effects even if they are not immediately apparent. Maybe the bend would've been worse without pentox. Who can tell? It's a safe drug compared to most so I wouldn't worry about being on it for an extended period of time. If anything it's probably improved your general health.

Have you started using the VED yet? Maybe that would be a proactive step to take at this time. Again, I'm sorry that you are feeling down. Know that people here do care about what has happened, and lets hope that it stabalises soon, or is just a blip that can be overcome in time by current treatments, or ones on the horizon.

[didi20031]

thanks for your comments, guys!

anyway, I don't know what I should do. keep on fighting? for what? I stopped having sex since I am always afraid about pain and ED. I lost most of my libido and especially the feeling in penis has changed so much... it seemed to get better some two months ago, but that was an illusion!

didi

[Tim468]

didi,

With  all respect, what you are proposing does not make sense to me. You have real improvement (and who knows if you might have been WORSE without the Pentox) and now, when you have a setback - you are ready to completely give up!

Why do you say that the improvement is an "illusion", when you have documented real improvements here?

The fact is, if you want a penis that works, you may HAVE to take pills your whole life, or do the VED, or take Cialis, or something that you don't want to do. The point is, you are going to have to try to solve your problem instead of simply wishing it would go away, or wishing that your idea of a sex life would go away. It's hard. It takes work. It can be discouraging. But a great deal of what you say that you have lost, seems to be because of what is going on between your ears, not between your legs.

I say this not to be hard on you, but to remind you that you are not alone. I have struggled with Peyronie's since I was 21 (now 54), and at times was very discouraged. But I finally realized that I had to try to DO something, rather than simply fretting that my life was over. When I accepted that my penis no longer looked the way I wanted it to look; when I accepted that it did not always work the way I wanted it to work; and when I accepted that it did not always feel the way I wanted it to feel - only then was I able to enjoy what I had. And that is a process of acceptance that I have to repeat sometimes, because my disease has gradually progressed over time.

Reality means not just accepting what we have lost, but also to remember what we still have. I sincerely hope that you will "get" this concept, for then it might allow you and some of the other young men who have come through here worried that their life is "over" to move ahead to a happier place.

Tim

[RichB]

I woke up today with a significant reduction in curvature and a somewhat return to normalcy. Wow. I never thought this would happen. Although now I have a slight upward curve I can deal with. I'll take what I can get!

[Starting2looseHope]

RichB, What do you think is the reason for your reduction in curve? Luck? Or treatment?

[Starting2looseHope]

I have posted on here and a couple other sites about what I am experiencing and I am wondering if anyone else is going through the same thing. My curve is significantly worse while becoming erect. Also I can not achieve an erection straight enough for sex without sort of helping it along with my hand or high stimulation. But once i have helped it along and am fully erect there is only a slight bend where the peyronies lump is, which is on the left side under my penis head. So basically i go from a curve while becoming erect, or have what i call a "weak" erection....to a bend at the top of my penis under the head head...which has caused the head to be unsymmectrical but that is about it...anyone experienced this also?....other things i notice to be a little different is that the left side (the side with the bend) does not seem to be as thick...and this might sound weird but i feel like my testicals and sack have kinda shifted??? i dk?