Progression of Peyronie's Disease

[George999]

Hawk, thanks for the dose of reality.  I too am convinced that what we are dealing with in terms of Peyronies is degenerative disease in the truest sense.  The term 'degenerative' means that without intervention it tends to spread.  It is like cirosis (or scarring of the liver) or emphasyma (or scarring of the lung) or alzheimers (or scarring of the brain), or I could name a number of other such disorders.  Thats why I think it is imperative to get a handle on things like inflammation, free radicals, tgf-beta-1, arginase, etc. in order to make headway against it.  It takes a systemic response to stop this degenerative pathology from progressing slowly but surely to its logical end.  All of these types of diseases follow a lot of the same biological pathways and I think there are similarities in the types of things that provoke them.  As you rightfully indicate, perceived progress is of little value.  We need to identify and recognize those things that truly wipe this thing out.  Not an easy task.  But this forum is a huge resource toward helping to achieve just that.

- George

[percival]

Hawk
The description of plaque as a flat area with two raised wavefronts fits my case exactly. Well observed - thanks.
Percival

[frankiewa]

I haven't heard anyone mention of pain when you touch the lesion. All of my lesions are very sensitive to touch and painful, not because of curve just when touched. They have only been there for a few months now. I want to make sure i'm not the only one where this is the case. Maybee i have penile cancer instead? God, i hope not.

[Steve]

So Frankie...just when are you going to see a Urologist about this???  We here on the boards can help with a lot of things like suggestions, a 'shoulder' to cry on, and even a place to vent our frustrations, but we're absolutely no substitute for a good (emphasize good) Urologist when it comes to diagnosing our actual maladies.

Bottom line -- get yourself to a Dr!!!

OK, I'm off my soap box now.

[Liam]

Thought this would ease your mind (maybe many men's minds).....great alliteration  .  I hesitate making such a large post, but, will go ahead.  The thought of penis cancer, yes it crossed my mind, too, is frightening.  Let's put that fear to rest.

Signs and symptoms
The first signs of a penile cancer are often a change in colour of the skin and skin thickening. Later symptoms include a growth or sore on the penis, especially on the glans (head of the penis) or foreskin, but also sometimes on the shaft of the penis. There may be a discharge or bleeding. Most penile cancers are painless.

Sometimes the cancers appear as flat growths that are bluish-brown in colour, or as a red rash, or small crusty bumps. Often the cancers are only visible when the foreskin is pulled back.

These symptoms may occur with conditions other than cancer. Like most cancers, cancer of the penis is easiest to treat if it is diagnosed early, so if you have any worries it is best to go to your doctor straight away

Source:  http://www.cancerbackup.org.uk/Cancertype/Penis/Penilecancer

What causes penile cancer?
Scientists currently believe that penile tumors are caused by cancer-producing effects of secretions that become trapped within the foreskin if they are not washed away on a regular basis. It is not surprising, therefore, that this particular malignancy is extraordinarily common in South and Central America, as well as other Third World countries, where public health and personal hygiene often are lacking. Also, circumcision, a practice that could improve hygiene, is not regularly performed. In the United States, penile cancer is a relatively unusual cancer, probably due to the country's superior sanitary and hygienic conditions along with commonly practiced circumcision. However, scientists are currently studying other causes of penile cancer, particularly the role of human papilloma virus (HPV), which already has strong links to cervical cancer. Antibodies to HPV-16, a specific type of papilloma virus also implicated in cervical cancer, have been found in many patients with penile cancer.

How is penile cancer diagnosed?
Unfortunately, early diagnosis of penile cancer is often missed because it is so rare in the United States that general physicians and even urologists may only see two or three cancers in a practice lifetime. Also, patients are often reluctant or embarrassed to call attention to their genitalia and may be afraid of surgical procedures or treatment of the penis. But the earlier the diagnosis, the more effective the therapy and the better the chance for cure. If diagnosis is delayed and the disease progresses, therapy may be less successful and more disfiguring. So, it is very critical that any skin erosion, ulcer, sore, irritation, discoloration that is noticed on the foreskin, the skin of the shaft of the penis or the surface of the head of the penis be brought to the attention of the physician by the patient and be promptly evaluated. Chances are good that most such lesions are linked to a bacterial or fungal infection or even an allergic reaction, all of which will respond readily to antibacterial or antifungal ointments and creams. But growths or areas that return or do not heal must be considered malignant until proven otherwise. The appropriate evaluation includes biopsy where the tissue is removed for examination under a microscope. If a precancerous or cancerous condition is found, prompt treatment and systematic, regular follow up are very important.

How is penile cancer treated?
Early detection and identification of penile cancer are very valuable because the treatments that can provide successful outcome are indeed low risk. If the tumor appears on the skin surface, your urologist may be able to treat the problem with a topical cream that has minimal side effects. If the lesion is larger, but still limited to about pea-size, a small local excision or a type of surgery that continues to shave layers of abnormal tissue until normal tissue is reached (Moh's surgery) may be performed. With these procedures, there is essentially no loss of form or function to the penis. However, careful follow up is critical to identify early recurrence. In the removal of these small lesions, it is very unlikely that cancer has spread to lymph nodes and, therefore, removal of the lymph nodes is usually not necessary. With larger lesions, it is necessary to remove greater amounts of tissue and also to consider removal of the draining lymph nodes in the groin in order to achieve a cure. In these circumstances, a combination of surgery, radiation and chemotherapy may be necessary. It is also important to note that external beam radiation is an alternative therapy, specifically for small lesions. Again, the critical importance of early detection not only ensures a better outcome for the treatment supplied but also provides more treatment options that can be applied.

What can be expected after treatment for penile cancer?
Your post-treatment experience will be directly tied to the stage of your cancer when it is diagnosed. Cure is almost certainly ensured when lesions are detected early. But it is less certain as the tumor becomes more advanced. Treatment is also increasingly more debilitating. Since your penis is readily accessible — you can visualize it easily and you touch it regularly during urination — you can help yourself greatly in detecting early disease by reporting any lesions that you see or feel. While patients at greatest risk are those who are not circumcised, every man should be on the lookout for penile lesions as they need prompt attention.

Is penile cancer contagious? Can I pass it onto others?
Until recently, the general consensus was that penile cancer was caused by chemical irritation and there was no concern about transmitting it. But recent data have implicated the HPV in both penile and cervical cancers. There appears to be increased incidence of these cancers in the spouses of people with this sexually transmitted disease. Thus, while penile cancer is not directly transmissible, if you or your partner has HPV, you need to use protection during intercourse, be aware of any lesions, and, if you are the woman, have frequent cervical examinations. Not only are efforts to eliminate or minimize the infection important but so are discussions with a urologist or other specialist about its link to penile cancer.

Does an operation on the penis mean that I will be unable to stand to empty my bladder?
If your cancer is detected early, the surgical procedures should not impact your ability to stand when you urinate. When the cancer is more advanced, the required surgical procedures may require you to urinate in the sitting position.

Will treatments interfere with my ability to have sex?
Early detection and minimal surgical procedures should not interfere with normal sexual function. More extensive procedures might, however.

Should all male children be circumcised soon after birth to prevent penile tumors?
This question creates much debate. Some experts believe that sexual sensation is diminished after circumcision, even though evidence points to a lower incidence of urinary tract infections and penile cancer in men who have had the procedure. Parents should discuss the risks and benefits of circumcision with the child's doctor.

If a male has not been circumcised soon after birth, will later circumcision as a teenager or young adult protect him from penile cancer?
There is now evidence that circumcision soon after birth is the most reliable protection from subsequent penile malignancies. A procedure performed in young adults does not have nearly the protective effect as when it is done in infants. Population studies suggest, for instance, that the incidence of penile cancer is: extraordinarily rare in Jewish males where circumcision at birth is an accepted ritual. more common in the Muslim population where circumcision at puberty is the established ritual. But it is not as common as in those individuals who have never been circumcised.

Source: http://www.tc-cancer.com/penile-cancer.html

[ComeBacKid]

Frankiewa,

I do agree with most of my previous posters and fellow peyronies sufferers, I highly doubt you have cancer of the penis, but getting to a urologist can't be a bad thing, I didn't want to go either but made myself go to 3 different ones.

Penile cancer is very very rare, less than 1% of men get it.  I will clarify some of the previous statments posted about circumcision and penile cancer cause there are many myths put out there, by many different groups, some with a very sick agenda that I won't even get into at this point.  I did a little research...

"The American Cancer Society does not consider routine circumcision to be a valid or effective measure to prevent such cancers... Penile cancer is an extremely rare condition, affecting one in 200,000 men... Perpetrating the mistaken belief that circumcision prevents cancer is inappropriate.'' 10

The American Medical Association, in a July 2000 report, states, "... because this disease [penile cancer] is rare and occurs later in life, the use of circumcision as a preventive practice is not justified." 2

I think we can trust our conservative leaning AMA in that if there was a benefit from circumcision they would advocate it.  I would go with their judgment on this subject since they are the experts.

I guess if one plans to be unhygenic or not shower ever, this could lead to cancer, but I think most of us here on the forum probably shower daily, penile cancer is not a concern that crosses my mind and if I were you frankiewa I'd try to focus on a treatment protocol for peyronies.  Get to a urologist though and get diagnosed, it will ease your mind to hear him say "you don't have penile cancer."

ComeBackid

[Hawk]

Guys,

These posts are way off topic of progression of Peyronies Disease.  In fact they are off topic of Peyronies Disease.

[Liam]

http://drjoea.googlepages.com/penis

[Bob Peyron]

First post: Question please about my condition: is it Peyronie's condition or not?

About a year ago I began to experience slight penile and testicular numbness. Doctors said that it was probably due to some nerve or other being tweaked and would resolve. However it has steadily worsened and the head in particular is very numb with only mild feeling. About a month ago I began to notice some differences both in texture and color with some small white spots and what appears to be patches of slightly darker color on the surface of the skin (the top of the head is dark and has a dark sheet across it while the rim of the head and most of the underside is a much lighter color, kind of whitish-blue).

Over the last two weeks it has become the worst. Usually it is fairly hard when flaccid, but the unit does not increase in size. During erections the tip of the penis does not usually harden. I can't feel scar tissue but it feels like the inside of the penis (just a few millimeters down from the surface) is very gummy. It is still pliable but it feels like I have a gummy worm inserted down the length of the shaft (which expands during erections). I usually only get erections at night because this has influenced me greatly psychologically. The penile numbness is constant (especially the head) but the testicular numbness seems to have gone.

I would appreciate an answer on this - I am only 20 and this is understandably very worrisome to me. The doctors are not helping!

[Liam]

I remembered the symptoms you mentioned and immediately went in search of info.  This should give you the basic facts.  The cause may be something else acting in a similar manner.  Hope this helps.

http://www.emedicine.com/sports/byname/Bicycle-Seat-Neuropathy.htm

The symptoms don't sound like Peyronies Disease.  But, your physician is better equipped to judge that.  See a Urologist at this point.

google:  pudendal nerve entrapment

Good Luck!

[Bob Peyron]

Thank you for your quick reply.

I went to the link (the pudendal nerve page on wikipedia) and I'm not sure that fits my symptoms. I've never really felt any strong pain (the pain is just a very mild "soreness" like that after an erection) or anything really other than numbness. The numbness has steadily increased since I noticed it first last October (13 months).

I will probably be going to a urologist on Thursday.

Hmm. . . if it's not Peyronie's I wonder what it is. Just in case I am starting a better exercise program and eating more vegetables (actually I wasn't eating any vegetables or exercising at all, so anything is an improvement. ). I guess I'm lucky, though - I went through the horrific depression and worry last year when it went numb so I'm able to get through this very logically at this point.

I'd like to check the size to see if it has degraded. Flaccid size appears to have degraded (not in length but in circumference - when I stretch it it gets tiny. I haven't had a daytime erection in about a week because I'm getting over the flu.

The part about the head not getting firm during erections worries me the most because it suggests that the problem is deeper than just a nerve.

[Liam]

The amount of pain can vary.  When symptoms are listed in a publication, they are in the most general terms.  Very rarely can you go down the list and check symptoms.  Think about a common cold.  Sometimes it hits you in the nose and sometimes it hits you in the chest.  You could describe two different colds you've had and they would sound like two different "diseases"  .  That's why even doctors go to doctors.  You just need that knowledgeable unbiased observer.

Get treated for the depression, too.  I'm sure you know about the downward spiral.  Depression feeds itself and makes you pay attention to unimportant things.  I use Wellbutrin...no unwanted sexual side effects.

[Bob Peyron]

Actually, the depression has been gone for quite some time. I haven't felt sad about it for a long time.

Now - I have a healthy dose of intellectual worry, but it's strange. Before I was in a horrific pit of sadness for two weeks, the worst that I've ever felt in my entire life. That's not an exaggeration. It was mostly worry that it was going to fall off or just get number and number until I couldn't feel anything.

Once I realized that that wasn't going to happen, I made it a future plan to see a doctor once I got back to the States. I still worried several times a day (such as when I used the bathroom or whatever) but it's not the same kind of worry. I'm through all the stages now (never reached anger or bargaining and skipped directly to acceptance).

One thing that cheers me up a little is people's statements that considering my age (20 with birthday in May) there's a good chance it could just revert itself as long as I live healthy.

I was able to accept it as a possible nerve condition until the things that cropped up a couple weeks ago (soft tip during erection and gummy tissue underneath surface of shaft), and should theoretically be more worried than I ever have in the past, but it seems I've used up all of the sadness and am just now looking at it more logically.

[serpicor]

I woke up with a bent penis on erection after an injury near the head.  There was a bit of a bend for awhile but this went away.  There has been some shrinkage in this area near the head.  However, during the time when it was bent (still is curved off to one side in flaccid state) I twisted the penis around while in flaccid state to try and straighten it out one time.  I did this not in an insane reaction but a reaction to correct it, and it was not a very strong force.  There was a slight discomfort at the time.  However,  a few weeks later a lump appeared in the area where it hurt.

My question is, this lump has been here close to 7 months.  The lump has not really shrunk to a nodule like some people here.  There was some tightness with the penis in terms of mobility in moving it in the area, but I have since had no bend from this lump.  To anyone here who has had this kind of lump, which has caused no pain to me on erection or otherwise, will this lump progress to a nodule which will constrict the penis, or will it dissappear as some have as of now.  I'm 31, so I assume age will benefit its healing.

[PJ]

Serpicor,

You didn't really ask a question. You made an assumptive statement that everything will probably get better based on your age. Sorry, but that's not so. Maybe, it will because it often does resolve spontaneously. But what if you were like me and it didn't? Wouldn't you wish you had done what you could early? Peyronies is a progressive disease that often goes through several acute phases through-out someone's life. Important factors in progression seem to be general physical health, cholestorol, diabetes, diet/exercise, and stress. (BTW folks I learned that here!   )
Sounds to me like you are in denial and are wishing that it will go away. I remember doing the same thing for a while. But if I had a time machine, I would do some things different.
I would see a urologist promptly. I would find one that would help me set up an aggressive non-surgical treatment with the hopes of stopping the diseases early. In your shoes, that's what i would do.

---PJ

[Liam]

Always see the Urologist.  Get your list of questions (this site will help you with those) and truck on down.

Good Luck and let us know what he/she said.

Liam

[serpicor]

I did see a urologist and he prescribed potaba at the time.  He said it was early-stage peyronie's.   I stopped because of the cost versus benefit in terms of money after a month.  The stuff is like $300 a month and if you're not on insurance, that's a significant expense for questionable benefit.  I imagine it was having some benefit in terms of keeping the lump down in size, and I may go back on it.  The only other issue with me was that during the time I had no stomach discomfort, but if I didn't take the pills with some form of sugared substance, you would feel tired from the hyperglycemia.  The issue with me was that it was such a low order force in my mind that the lump was not of a severe order so that I wasn't sure of much benefit from using the stuff.  

[PJ]

Admittedly Potaba does not have a good track record and you clearly do not have good insurance. (My rant against the injustice of health insurance has no place here so I will forgo) Here are some facts:
1. Prompt treatment of peyronies is the most effective. You have a window of opportunity.
2. It could go away and does for about a third of the people. It could get worse.
Not meaning to be alarmist, but you are rolling dice. You are betting money or your penis. I wish you the best. I wouldn't want anyone to go through what I have had to.
---PJ

[Rico]

If you read on the other forum, someone mentions to Dr. Levine about potaba, he says that in his opinion he doesn't believe it does anything, and if you wanted to use a oral medication for your peyronies he would suggest pentox or arginine.... I do believe he is more on top of this than other Urologist, and this is because it is his primary field....my urologist prescribe potaba also, I didn't take it, and when I gave him Dr. Lue's and Levine reports he prescribe the pentox or pav  pentox/cilais/arginine.... pentox is much cheaper also than potaba and you don't have to take the cialis with it...one could do pentox/arginine if he choose, or ginkgo and arginine would be another choice along with opc's....

Rico

[serpicor]

I believe potaba stops the progression of peyronie's, while also softening the plaque because in a recent double-blind study only 1 out of 35 experienced a worsening of the bend, whereas 13 out of 35 experienced a worsening condition on placebo.  I'm not sure about the pentox/arginine/viagra.  But thanks for shocking me into thinking about taking something for this.   I'll have to tell a funny one about going to the doctor today.  I went to one of those walk-in clinics, not urology, and asked for a prescription for potaba.  I told the doctor that a urologist prescribed it in another city.  He asked me about whether it was tablets or capsules.  I told him capsules and that you take 24 pills a day, 500 mg 6 tablets 4 times a day.  He said ok, and left to room to check on it, since he hadn't heard of potaba.  I could hear him on the phone outside with the pharmacist, saying yeah, you take 24! pills a day.  Then I heard him say good luck on him finding a prescription in the city in a joking manner.  When he came back, he said at first he didn't believe me and thought I was trying to overdose on something.   He asked if I had any liver or kidney problems or diabetic since it causes hyperglycemia sometimes, and I said no.  So he wrote the prescription.  It cost $210 at Walgreens for 720 pills, a one month supply, which is not too bad in my opinion.  Honestly, when I was on the potaba, it didn't affect my stomach at all, and I think perhaps that people in the past were talking about the tablet form of potaba, which is what people would take, and that the capsules are better, which is what I was on.

[Hawk]

PJ,

You mentioned that

2. It could go away and does for about a third of the people.

I am not sure if our information radically differs, or if I misunderstand your use of the term "go away".  Based on sources that I consider to be the most reliable on this topic, the spontaneous resolution rate of Peyronies Disease is 7% - 15% and most place it at the lowere end.  I am sure I have read that Levine would go so far as to say that those that resolve are suspect for not actually being Peyronies Disease.

While I question any implication that Peyronies Disease never resolves, I am sure the overall rate would be closer to 10%.

[serpicor]

I have read that if the lump or scar is 20 millimeters or less there is 100% resolution of the scar in a particular study, and I know there was no drug, maybe it was just vitamin e, but I'm not sure if it was even that.  If the lump was greater than 20 millimeters only 20% resolved without medication.  My lump is probably 25 or 30 millimeters so it stands to reason to use some type of medication.

[Hawk]

Serpicore,

Welcome, and thanks for the posts.  

I hate to be the bearer of bad news, but we mut educate ourselves.  We can only do that with accurate information. I have seen a couple posts now that have made misstatements about Peyronies Disease and spontaneous resolution.  This is no wonder since the Levine survey showed that even most GP's and uro's are ignorant on this issue.

I have read that if the lump or scar is 20 millimeters or less there is 100% resolution of the scar in a particular study, and I know there was no drug, maybe it was just vitamin e, but I'm not sure if it was even that.  If the lump was greater than 20 millimeters only 20% resolved without medication.

I know of NO such evidence based study, and in fact, every bit of documented information soundly refutes a resolution of Peyronies Disease anywhere near this rate.  The truth is that every urologist with an expertise with Peyronies Disease refutes such numbers as as being completely false.  

[PJ]

Thanks for correcting me Hawk. I looked to see where I got that impression and it turns out it was the 'pamphlet'  I got from my uro when I was first diagnosed. It quoted no studies, soI don't think it can in any way claim to be an authority. I am sorry I claimed to have learned it here, that was me misremembering.
---PJ

[ComeBacKid]

No worries man, there is so much information out there on peyronies and treatments, all the facts and data can blurr together.  I agree with hawk on the percent that resolve, probably somewhere around 10%.  We have seen many men come here, and off the top of my head I can't think of one that had complete resolution and left.  I think sometimes when numbers like 33% are thrown out like that, it makes some people think "I don't have to do anything my case will get better."  Hence they do nothing and let it go only to see their condition get worse.  For me I was told to take vitamin E which I took for over a year, it did nothing.  Another good point you bring up- always ask for or read a study to back up a statment.  I'm actually concerned if some pamphlet is telling guys that 33% of peyronies cases resolve on their own- this is very misleading in my opinion, I would love to see their study to back up that claim.  Anyway this was a good exchange, especially for newbies who are thinking of maybe doing nothing for their disease.

ComeBackid

[serpicor]

I know it doesn't sound like it could be true, but here is the study correlation relief of symptoms with plaque size:

http://www.blackwell-synergy.com/doi/abs/10.1111/j.1442-2042.2006.01270.x

[serpicor]

Here is another study correlating treatment with plaque size: http://cat.inist.fr/?aModele=afficheN&cpsidt=846706

In this case, they used medication, but probably the same effect would have occurred on those not using medication in the previous study, at least for the smaller plaque size.  They mention 30% resolution for 10-20 mm and greater than 20 mm, so it's a bit higher percentage than in the no-treatment study I posted before.  It would be interesting to see what effect the pentox, arginine, viagra is having on those with the larger plaques.

[Liam]

Peyronies Disease is misdiagnosed 30% of the time when nodule is small.

This is my opinion.  Nothing More!

Liam

[scott]

I excitedly got out my ruler with metric divisions on it.  If I am reading it correctly, 20mm is about the size of my thumbnail.  My plaques are nowhere near that size, and I am taking not only vitamin E, but L-arginine and pentox, as well.  So, I should look for fairly rapid resolution, right?

Tim, do you have access to the full text of these articles so we can see what's going on?

[jtl4661]

I have a stupid question what will Viagra do for Peyronies Disease other then help with an erection? I don't have that problem just the 90 degree curve. My scar is indented causing the bend.
I also want to know if anyone knows of a medication that may help that is not an anti-inflammatory? I can not take anti-inflammatorys as i had a back fusion and need th inflammation for bone growth. All the uros want to operate and give no other options. My Pain is gone now with erections. Dose this mean the progression is done?
JTL4661

[PJ]

My anecdote as far as pain versus progression:
Pain lasted approximately 4 months.
Progression has been pretty steady for about 3 years now.
About the only conclusion that one may draw from this is that progression may in some cases continue long after pain resolves. Course we have no idea about what an 'average' case should expect.
---PJ

[George999]

jtl,

Viagra was initially developed as a blood pressure medication.  It also happens to facilitate erections for people with ED.  Since there is a lot more money in ED drugs than in BP drugs, further development on Viagra as a BP drug was halted and it was relabeled as an ED drug.  The point here is that drugs like Viagra have a lot more going on than simply facilitating erections.  In the case of Peronies Disease, they actually help to inhibit the scarring process and inflammation associated with Peyronies by increasing NO availability in the tissues affected as well as other benefits in terms of altering body chemistry.  Viagra is a powerful anti-inflammatory since it also inhibits PDE-4 (mediator of inflammation) as well as PDE-5 (mediator of Nitric Oxide).  It is basically inflammation that is one of the main factors driving Peyronies.  I would certainly question the effectiveness of surgery if inflammation is not going to be controlled during recovery.  Peyronies is basically a disease involving scar tissue and surgery INDUCES scar tissue!  So you are in a catch-22.  In order for the bones to properly fuse, the cartilage separating them needs to be eaten away through an inflammatory process.  It is the same inflammatory process that is exacerbating your Peyronies.  Given the choices, if I were you, I would be VERY cautious.  The last thing you want to happen is to have a failed back surgery.  You also do not want to go through a Peyronies surgery that leaves you worse off than where you started AND that can happen.  So my advice would be to do NOTHING for your Peyronies at this point and wait out the time for your back to heal (6+ months from date of surgery as I understand).  Only after that time would I consider taking action against the Peyronies.  At that point you should be able to attack the inflammation (and other factors) head on, without risking messing up your back surgery.  I know that things like Pentox are not considered to be anti-inflammatories, but I certainly wouldn't be taking it, not knowing the effect it might have on a condition that depends on exactly the opposite types of effects for success.  Perhaps others can also indicate their perceptions here, but my feeling is that at this point your Peyronies probably is not going to get a whole lot worse during the time it takes for your back to heal and I would in NO WAY allow myself to be rushed into a Peyronies surgery under these circumstances.

- George

[serpicor]

I've seen some people post about the VED.  Now I saw on a website, don't recall, about a doctor who used the VED on a couple of occasions, and he said it permanently (in his words) made his penis not as firm through damaging the penis.  He also mentioned that others had this experience, and he wasn't talking about overpumping, etc.  

[Liam]

Responses should be under the VED topic.

Thanks

Liam

[Tim468]

Dear JTL

I would go back to your orthopedic doctors and explain - carefully and completely - what the issues are. Inflammation is not a prerequisite for new bone growth, and anti-inflammatories do not stop it dead in it's tracks. I am in fact uncretain what the problem is - it is not a complete contraindication, it is a RELATIVE contraindication to use of NSAIDS ( recent surgeries on the back) - and also, that may have been more relevant in the immediate postoperative period than more than am month later.

The best way to be certain is to talk to them about it - embarrassing or not.

Tim

[ThisSux]

Hi, I am just wondering if anyone has experienced progression similar to mine.

it has been 20 months since my initial injury (prolonged sex/masterbation while not fully erect). I have long cord-like things running from the base to the tip (along the top of my shaft only). The cords are thick at the the top and get thinner towards the glans.

I have no curvature or very slight but my erections are not as hard anymore and glans does not inflate fully. My girlfriend said she noticed this...

My main symptom is daily pain... almost constant.  It is a burning/fire sensation near the top of the shaft. It is really unbearable and nothing seems to make it go away.

I feel like the pain died down or went away from almost a year and just kicked back up again in the past 6 months.

Is it normal to have pain this long after an initial injury?

I am taking ALCAR/Vit E

[tdsc]

I thought I would comment on what my injury looks like, which is situated a bit behind the head on the shaft.  While I was on grape seed extract and vitamin E, it made my erection larger than normal.  I noticed that there were two small x's where the inflammation was (maybe 2 or 3 millimiters in length).  I assume these are tears that are healing.  There has been shrinkage on this side near the head.  The unusual thing is that the last time there was inflammation, I noticed the red inflammation went around the shaft near the head, resulting in a few millimeter shrinkage.  The only thing I can think is that the penis somehow knows when there is pressure on one side, so it begins to contract and shrink in an effort to maintain a functional penis.  However, by not masturbating, inflammation episodes have vanished, although there is still pain.  

[tdsc]

ThisSux-

Do you drink alcohol?  I noticed that alcohol would make the lump at the base of my penis painful.  The only other thing would be masturbation/sex, which could irritate it.  I guess these cords are not associated with red inflammation on the shaft?

[tdsc]

ThiSSux-

Here is a link that is similar to what you're describing:

http://www.biospecifics.com/forum/readThread.asp?forumID=14&threadID=1372

They mention fibrosis.  Pentox and Vitamin E together has been shown to reverse fibrosis, while neither one alone showed an effect.  I have heard the VED permanently weakens the erection, so I wouldn't try that.

By the way, you can search for chords using the advanced search in google.  Type in www.biospecifics.com in the domain window and chords in the keyword.

[tdsc]

I was posting here about soy isoflavones.  I read that soy isoflavones is actually a platelet aggregator rather than platelet thinner, and this was my experience over the couple of days I used it.  Whereas vasodilators would make my old tendonytis a bit loose and "hot", soy isoflavones made it tight and cold.  If this is true, it could be disastrous for Peyronie's if the penis needs a normal flow of blood.  On the other board, www.biospecifics.com, there was a poster there who took soy isoflavones for years, stopped for a month, and saw a drastic worsening of his condition.  It was actually a soy diet that said it is a platelet aggregator, but my experience was that the soy isoflavones itself was a platelet aggregator, so it's not definitive.  What is stated below is an older post than what is here at the top, which is the newest update.

Also Vitamin E plus fish oil (omega-3 and omega-6): Vitamin E is an important regulator of prostaglandin E2 (PGE2), which plays a key role in inflammation and diseases associated with inflammation. Specifically, vitamin E inhibits cyclooxygenase-2 (COX-2) enzyme activity that promotes inflammatory response by catalyzing the synthesis of PGE2.  Finally, vitamin stabilizes and prevents the oxidation of the omega-3 and omega-6 EFAs that are needed to generate anti-inflammatory PGE1. http://www.freepatentsonline.com/7029712.html

Also, I have read a soy diet increases SOD activity and Nitric Oxide: http://www.fasebj.org/cgi/content/abstract/05-4008fjev1

I am stopping the pentox (provisionally) and will keep you updated if the effects of soy, fish oil, vitamin e, and I will possibly add mangosteen juice mirror pentox.

Update: I am only taking soy isoflavone right now.  It does not have the microcirculation effect that inflames my knees or lower legs like pentox, acetly-l carnitine or grape seed extract.  While taking pentox or acetyl-l carnitine plus vitamin e, it temporarilly makes the plaque appear smaller.  The soy isoflavone does not have the same microcirculation effect, which I do not know is necessarilly bad.  It eliminates the pain.  It is a very pleasant feeling while taking soy.  Pentox had a bit of a stimulant effect.  There must be some type of antihistamine effect of soy isoflavone as my nasal passages are clear.   I am taking the gnc soy isoflavone concentrate.
Update 2:  The soy + Vit E resulted in a very hard spontaneous painful erection on falling asleep so I am going to eliminate one or the other and continue taking a multivitamin (men's health) and hope that natural healing takes place.

[Tim468]

This Sux,

I note that no one has answered your questions - probably in part because of some slowing down of posting activity with the holidays.

I also think that symptoms like yours are unusual. A cord like thing is not uncommon - I have a thickening along the dorsum of the penis that limits it's ability to fully straighten. This feels cord like and is palpable when I am soft. Additionally, I have had intermittent pain off and on for yers, but the main symptom had been an aching feeling that heralded a worsening of the curve. For me it has always been glacially slow until the last two year, when the new dents appeared, and the pain with erection became noticable.

If you have continual pain, then you need to be reexamined for a cause, If you have pain with erections, then it is more likely that your Peyronies Disease is still in an "active" state, and more aggressive anti-inflammatory therapy might be of value to you. For me, I have personally found that 800 mg of Advil 2-3 times a day for two weeks will break a pain/inflammation cycle for a good long time. Do not exceed 2400 mg a day of advil (ibuprofen) or you can risk kidney failure.

Tim

[Crook]

Hi all,
Something has been concerning me lately and I did some research and thought I possibly could have peyronies, I dont wanna sound blunt but 2 months ago this girl sucked really hard on my penis but not for long(a second or 2, she wanted to show off), it didn't hurt afterwards but around that time(next day or 2 days later) I noticed what seemed like a vein like vessel running down the left side of my penis wich would be visable when erect, it was not a vein, I saw a urologist and he said it was a thrombosed vein, I had a doppler and it came back normal, I was guessing it was either a lymph vessel or a nerve, during this time when flaccid my penis would rest on its right hand side wich I would always notice when going to the toilet.

The vessel has settled down back to normal although I have noticed the "head" of my penis is slightly crooked, when I am erect or semi-erect the shaft is straight although the head sort of twists off abit to the right, there is no pain and I can't feel any inconsistancies in firmness or what would apear to be calcification. I am wondering if this is peyronies?

Thanks.

[Liam]

Crook,

Chances are you don't have it.  You are probably noticing things which were already present.  Your condition just has you paying attention to that region more.  Do follow up with your urologist.

This post dovetails with the discussion in the VED topic.

Liam

[Tim468]

Liam,

I respectfully disagree wth what you said for several reasons. First, I think most young men pay a LOT of attention to their penis, and if something chnages with it, they notice it. I doubt very much that any man who notices something is noticing something that was there all along.

Second, although we can discuss the requirement of a palpable nodule for the diagnosis of Peyronie's Disease until the cows come home, it does seem that some men develop either dents or minor deviations based on smaller than palpable scarring. This new deviation of the head of his penis described by Crook, following an injury he can remember (which is more than someof us can recall) seems like Peyronie's to me. Also, the negative ultrasound would have ruled out the major considered diagnosis - a thrombosed vein - anyway (and, don't forget, the veinous damage seems to have resolved).

Crook, I would consider returning to the urologist, and pointing out that there is a new finding of deviation of the head of your penis when erect. It might lead him to consider treating you differently.

Tim

[Liam]

Crook and Tim,

Although we disagree on the probability of the diagnosis, we agree on the advice.  A follow up is called for.  

It seems your urologist is nothing short of thorough in ordering Doppler ultrasonography (I think most would say give it a couple of weeks and come back to see me and if the problem is still there, we'll do some tests).  He was taking your case seriously.   But, follow up.  Your urologist seems determined not to miss anything.  

If everything "works", don't worry.  Don't ignore symptoms.   But, don't worry.


As far as noticing things for the first time, I think, based on personal experience, it is entirely possible.  Most of us have had our attention called to something that made us question something else.  How many times have perfectly normal family members or friends asked if a bump or lump is normal?  Having something wrong with your penis (prized possession that it is) would naturally make a man take a longer look.  The normal convolutions of the penis offer myriad possibilities for concerns.

Liam

[Crook]

Thanks for the replies, this forum is very helpfull.
It is defenetly something new, everytime I goto the toilet I clearly notice it hangs on its right side.
I am changing urologists, I had to call up and ask for the doppler after doing my research. I am going to see a urologist but I feel as though I have to suggest to them what to do otherwise nothing gets done, is there a scan wich can detect peyronies? such as an MRI or PET?

[Liam]

I found this.  It names the imaging techniques.

Atypically located Peyronie's disease: imaging findings
Journal European Radiology
Publisher Springer Berlin / Heidelberg
ISSN 0938-7994 (Print) 1432-1084 (Online)
Subject Medicine
Issue Volume 5, Number 6 / December, 1995
Category Genitourinary Radiology
DOI 10.1007/BF00190941
Pages 669-671
SpringerLink Date Tuesday, November 16, 2004
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Genitourinary Radiology
Atypically located Peyronie's disease: imaging findings
G. Helweg1   , F. Frauscher1, H. Strasser2, R. Knapp1, W. Judmaier3, D. zur Nedden1 and A. Reissigl2

(1)  Department of Radiology II, University of Innsbruck, Anichstr. 35, A-6020 Innsbruck, Austria
(2)  Department of Urology, University of Innsbruck, Anichstr. 35, A-6020 Innsbruck, Austria
(3)  MRI Institute, University of Innsbruck, Anichstr. 35, A-6020 Innsbruck, Austria

Received: 16 May 1994  Revised: 12 December 1994  Accepted: 10 May 1995  

Abstract  We report the case of a 44-year-old male presenting with deviation of the penis during erection. Upon physical and clinical examination the patient did not have the typical findings of Peyronie's disease, therefore he was admitted for further evaluation by conventional sonography, duplex Doppler ultrasound, endourethral ultrasound and magnetic resonance imaging (MRI). Endourethral ultrasound and MRI provided evidence of Peyronie's disease with atypical involvement of the corpus spongiosum and, in addition, demonstrated nonpalpable plaques in the septum of the penis.
Key words  Peyronie's disease (IPP) - Endoluminal ultrasound - Magnetic resonance imaging - Corpus spongiosum - Corpus Cavernosum

SOURCE:  http://www.springerlink.com/content/ukp6614284862302/

Here is an interesting "Google" to try:  ATYPICAL PEYRONIES  Further posts on this subject would probably fit better under "Causes Of Peyronies Disease" topic.

[Tim468]

Fascinating post, Liam!

It suggests several things, all of which cause feelings in me.

First, it suggests physicians who are willing to dig further because what their patient tells them did not easily fit into a traditional diagnosis. How often we hear of urologists who blow off the patient as anxious, or "probably normal", or - well, they are just blown off. And why? because the urologist may have had a preconception that Peyronie's always has a palpable nodule or placque, and that without it, it could not exist. never imagine that the physician may simply have been unable to palpate it! It leaves me frustrated at the intellectual laziness of the urologist who do not dig deeper to solve puzzles (*important* puzzles, too).

Second, it validates the reports we get from men who have developed a deviation or dent, but who report that their physician says "it's nothing". It leaves me sad for the men here who report such interactions, who must read such a report and wonder "why did my doctor not look that hard for the source of my problem?"

Finally, it reminds me that when we talk about Peyronies Disease, we need to be aware of the fact that any change in a penis' shape should be investigated. It should not be ignored nor should we assume that it will get better on it's own.

Tim

[cs65]

Hi Everyone,

I'm a new member, and just found your site today.  After some vigorous sexual activity with my wife during the holidays, I began experiencing some pain on the top of my shaft just where it meets the head.  Pain is still persistent, and is especially bad when I'm wearing any type of clothing.  Small bump has developed there under the skin.  Erections are hard to come by, and are much smaller than before.  

I've seen 3 urologists so far, and they've all suggested a wait-and-see approach.  However, I've started a full regimen of supplements (E, C, Bromelain, Quercetin, Paba, Gotu Kola, etc), and I'm starting on ALC and L-arginine tomorrow.  In the mean time, the pain is brutal at work.  I've taken 600mg of Motrin 3x/day, but that doesn't seem to help.  One urologist gave me a prescription for Elavil for the pain.  Does anyone have any experience with Elavil, or any other recommendations?

Thanks, and good luck to all.  

[Old Man]

cs65:

Elavil is a drug given mostly for epilepsy. It is part of a family of drugs used for treating those with this disorder. However, it is sometimes used as "off label" medicine for other maladys. Like in the case of Neuronten which is given to treat symptoms of "shingles" and its related pain.

It could relieve the pain, but I suggest that you be extremely careful with using it. IMHO, I would seek other pain meds to avoid the side effects of psychological drugs.

Old Man