Progression of Peyronie's Disease

[Hawk]

Just one point, What do you mean your "skin is so badly scarred and stretched?"  

Skin scaring would have nothing to do with erections.

[Tim468]

despise,

Your description of your pain is fairly vague and does not suggest to me a urethral stricture. In a urethral stricture, the urine stream is faulty - it may trickle or it may shoot at weirdly (especially if the stricture is at the end of the penis).

When you talk to a urologist (and NOT on a web site) do your best to describe in plain words what it is that you feel. Stop trying to diagnose the problem or where it is located, and stick to telling him or her what it is that you feel. For instance, getting a scope shoved up your urethra is quite likely NOT going to be of value - and why on earth would you want a doctor who does what a 17 year old tells him to do? I would prefer a doctor who thinks for himself and then tells me what he thinks (and what he thinks the next best thing to do is).

So, instead of deciding what tests you are going to "push" for, think about getting advice and then listening to it.

Tim

[despise]

Ok well I know I have something wrong with my urethra. Some doctor that doesn't even know what my penis looked like before said I had peyronies disease. My problem was that I wasn't telling him what was wrong. I was expecting him to know. My penis is like twice as big flacid then it normally is. Its swollen and he obviously couldn't tell that. I am simply having to many issues that aren't associated with peyronies disease.  

[despise]

Heres the deal. I have to wait for my urologist because we are broke. I want to ask some questions to see if anyone experience these symptoms. Only for my peace of mind. When you guys found out you had Peyronies Disease was your penis swollen? Mine is always larger then normal and full of blood. Before i would be really soft and flacid. Now it hurts and is big flacid. A example is I went to six flags and my penis would hurt on every ride I went on. When I lay on my bed my penis pushes down and sticks to my balls which causes stretching of the skin. I have woken up sometimes where my penis in flacid is all the way to left. I have been taking hot baths and i noticed the skin would swell up and curl over the beginning of my the head of my penis. It will shrink massively and then relax and be extremely large and full of blood when flacid. Its becoming a big issue I have to wear gym shorts because it hurts. One day I was at my cousins house and it shrunk and hardened. When I walked up her stairs my penis would be pulled by my boxers and hurt like crap. I have problems getting my urine out too. Sometimes I have to push for the rest of the urine to come out. I have been taking Flomax from my urologist but he says this is to relax my bladder. When I pee sometimes i have to put a effort to push out the urine does this have anything to do with Peyronies Disease? I also have a issue with my penis moving and changing weird shapes. It will bend up words but usually flacid its hanging to left. Im pretty sure this has to do with urethral issues but I just want to know becuase I have to wait a while untill I can find out. Is waiting a long time with a urethral injury bad? Could it cause more problems. Thanks for everyones help I love you all for your dedication.

[Tim468]

despise,

What you describe is NOT classic for Peyronie's Disease. I do not know if it is something that is "bad" or not, but the symptoms that you describe are bad enough that you should be seen NOW. You say that you can't afford to go to the doctor right now? To me, it sounds like you can't afford NOT to go. Perhaps even a trip to the ER - but you should be seen as what you describe is abnormal and different than what was going on (as I recall - perhaps incorrectly) than when you were first seen by a urologist.

Sorry to not give you peace of mind. I wish you could find a way to deal with this.

Tim

[Hawk]

Despise,

If you are sure you are not obsessing, and your accounts of pain seem like you are not, then Tim is dead on.  I would not be too concerned with moderate curves in a flaccid penis but if you clearly: are swollen, have unusual trouble urinating, then go to the E.R. if you must but see a doctor.

It is even a bit unusual that you would have pain when squeezing or palpitating your flaccid penis with your fingers.

If you have some sort of infection, depending on what it is, it could cause serious problems including kidney damage or other issues we could only guess at.

You either have a very strange case of Peyronies Disease with an inability to assess and describe it or you have something else going on.

[kenny82]

Hallo i'm new to the forum,

and have a bit generall question. Often you can read people writing about corporal fibrosis, due to Peyronies.
I was wondering what exactly it is, and how does it come to that fibrosis.

Here is a quick look at my case. I have a slight till moderate curvature due to an injury on one side of the penis.
I also have something like an hourglass effect that goes one time around the whole penis at the exactly location.

I can not feel any hard plaque or something like that when in flaccid state, maybe because it didnt evolve till now, but in future will. (Injury since May08). The Problem is that my penis is much more hardend in the erectile state than it was before the injury.
It's like it lost the bit of elasticity that i used to experience before and think that should be normal. My biggest concern is that the penis is also quite hardend in the flaccid state. I woulnd say swallen, but it doesnt feel soft, more like rubber, if u squeeze.
I was never been able to experience the flaccid state that i had before the injury since then.
The corpora are always like in a semierect state.

So now i am wondering if that kind of issues could lead to corporal fibrosis. I feel like my penis becomes less and less flexible.
Has anyone experienced similar issues?

I been to a doctor directly after the injury (3 oder 4 days), he didnt say much, said it might heal for its self, and that he only new the big injuries like the standard form of a broken penis etc.  

P.S.:
I was able to deal a bit with the harded state, because i was taking the vitatim E. I think that it helps to keep the blood thinner. As soon as i gave it up for 3 or 4 days the issues became worse.
I am planning to visit an other doctor after the holiday, but dont think that he will know the long term effects of that kind of problems.


Thank you
Kenny

[alcohen]

An update to my situation... these may need to be moved.  I am thoroughly disgusted.  After waiting FOUR MONTHS to have a doppler ultasound done it was finally done.  The actual ultrasound was done by technicians and not by the urologist himself.  I recieved an injection of half of what is "normally given" in this situation because they felt that would be enough.  They told me they would be back in fifteen minutes and for me to get as much of an erection as possible.  After less than a minute I had a large erection.  I yelled for them to come back but noone could hear.  I tried to sustain my erection for a full fifteen minutes but found it to be impossible.  When the technician came back she wasn't sure whether to give me a second injection or not so called the urologist in the other part of the building who told her to do so.  This gave me an erection that would not go away and they recieved the necessary imaging.  

At this point I pointed out areas on my penis to my technician.  Things included...the tendon-like and lumpy development in the center of my penis that prevents elasticity and hurts.  It was not there before the onset of my problems.  It has gotten steadily bigger.  Also, the pea-looking lump right underneath the head of my penis that has since spread to a ring of what looks like a puffy mass.  Also, on the underside of my penis, the mass that was there as well.  I explained that this is where I had lots of pain as well.  These are all areas that are only visible when I have a erection and are more pronounced the larger that erection gets.  She said that she did not know what those were but to tell my urologist.  

My appointment was an hour later about a five minute walk down the hall.  He comes in and says I have venous leakage.  Also, that it is probably congenital.  My jaw hit the floor at this point.  Congenital my ass.  I had visited him at two previous appointments, the first two have an initial exam upon which he prescribed me Trental.  The second of which was to see if he could give me anything to stop my nonstop and impossible to get-past pain.  He prescribed Lyrica.  At both appointments he said that he would see about moving my doppler ultrasound study to a closer date but this was not able to be done.  My first appointment with him was on August 12th, the ultrasound was done on December 29th.  

When he saw my dazed look, he backpedaled and said "Well..did you have any penile injury?"  I exclaimed "yes!" which is what I had explained in great detail on each of my previous two visits.  The only thing it entailed was being masterbated twice by my girlfriend, the second time during I experienced a pain that I thought was just from excessive friction.  The morning after, I had swelling near the head of my penis, a large bruise/blood under the skin on the left side of my penis, and ten or so small red bumps near the bottomof my shaft also on the left side.  

He said hmm well that could have caused it, and that it was possible that I had a penile fracture.  I questioned about the awful pain and the discussions we had on previous visits about Peyronie's.  He said he recommended Levitra.  I asked about the pain again and he said that Levitra would help me achieve a full erection.  I told him that my primary concern was getting rid of the pain.  He said that he understood that I was waiting to have sex until marriage and that I did not have to take the Levitra if I did not want to.  I said that this was certainly not what I was looking to do, but just that the nonstop constant pain that prohibits from me functioning on a day-to-day basis as I normally do was my primary concern.  

I find it impossible to go the gym anymore which I would do five times a week because of my chronic pain.  The emotional toll my condition is having on the rest of my life including my relationship with my girlfriend of 9 months (who I had only been dating for two months when I first began having problems) is unbelievable.  After I explained this, he said he could recommend a good sexual counselor.  I just stared at him very confused.  I asked him if there was anything Peyronie's related and he said that he did not see any calcification but that he did see my curve on the ultrasound.  He said that there was no scar tissue that showed up but that thin layers of scar tissue cannot be seen so that does not rule out scarring.  He said that Peyronie's pain goes away in 3-4 months.  I brought up the hourglass indentation that sometimes appears, the severe penile shortening, the loss of elasticity, the ever-increasing curve as well as number and size of lumps, etc., and he said that the Trental will deal with that and that it is proven to do so.  I asked if that meant I had Peyronie's and he said that I had venous leakage.  I asked if that would cause the awful pain that I have and he said no.  I pointed out that on the website www.menshealthpd.com there is a video interview with him that has him saying "unfortunately there is no evidence that any oral medication has any effect other than placebo when it comes to Peyronie's".  He gave me a noncoherent answer to this which I don't remember any of.  

I also brought up the other issue I am having.  When I pee, it takes a long time to get everything out.  There is no force to my pee stream.  It hurts after I pee.  After I pee, if I don't stand still for at least a minute after I think I am done (shaking does not help) I will pee in my pants.  I have never had a problem with peeing before my issues began in June.  When ejaculating, it is even worse.  The sensation when ejaculating is very small.  It hurts no matter what I am doing, but when ejaculating it does not shoot out.  It certainly used to.  It very slowly trickles out.  I takes around fifteen minutes for my penis to restore itself to its flacid state.  This only happens after all the sperm has made its way out.  There is a significant amount of pain and soreness as this is happening.  The diagnosis from my urologist?  NO DIAGNOSIS.  Unacceptable.  

He let me know that there was nothing that could be done for venous leakage.  There was no legitimate surgical option and nothing in the way of VED or other options was mentioned, just taking Levitra.  At this point I brought up how I had sustained unfortunate further injury to my penis that looked to have substantially added to my scarring in late July.  The inital incident occurred at the beginning of June.  After being given Levitra by a urologist, he instructed me to masterbate.  I did so with my girlfriend who did it gently.  I was certainly fuller than I had been in over a month, but all of a sudden I felt a great deal of pain.  At that point my erection immediately went away.  A few days later I noticed the tendon-like lump that has continued to grow.  It runs from the base of my shaft to near the head, and is in the exact same spot where I felt the pain.  The uro said that I just had to be careful.  I explained to him that I was worried about further injury and he said that the sexual counselor could help with that.  

I thought that I had found a doctor who could help me.  Unfortunately it appears that I was wrong.  Now two days later I sit at my computer hurting worse than ever.  Why is this?  Because of my new pain!  There are two injection marks on my penis.  The first is a very small needle-prick mark that is healing nicely.  The second?  A horribly purple, black, and blue mark that is spreading.  It feels numb in some areas and hurts a lot.  This mark is from the second injection I recieved.  The one that was given to me when I was PARTIALLY ERECT.  From everything I have read on here if that was not an unfortunate error in judgement I don't know what was.  Sucks to be me I guess?  

The injections were both done on the right side of my penile shaft.  I have noticed that since then there is a noticeable amount of increased curvature toward the left.  I don't know if this is because there is less blood flow on the right side of my penis due to the large and painful injury on that side?  Too confused and upset right now to even think clearly.  

I don't know what to do.  This visit to my urologist, the one I had been waiting for four 4 months, was supposed to provide me with something other than more questions.  I was not looking for closure, as I realize that is something I will either never recieve, or it may be a very long road to.  But I wanted at least an idea of exactly what I am looking at.  The diagnosis of venous leakage along with a sample of Levitra was unacceptable in my eyes.  It did not address any of the pain that I am having.  It is my understanding that venous leakage can occur sometimes where plaque is located?  Would dealing with the plaque address the leakage or is that not something I should strive for?  Also, four months of Trental has so far done nothing for me.  

I need help.  What route should I take?  Another doctor?  I want some semblance of my life back.  I have always been a very sexual person but that is an impossibility for me now.  I am in constant pain and am so tired of dealing with what has been happening to me for the last seven months.  
   

[jackisback]

I think that you should buy a plane ticket and see one of the hot shot Peyronie's specialists frequently referenced here. I'm sorry to hear about you experience at this office, that is horrible. Docs should know that their patients are already in an embarrassing situation, and leaving them in a room with a full erection for 15 minutes unattended is such a complete disregard for the patient physically and emotionally.

As for whether the plaque's resolution can cause a resolution in venous leakage: I have also been told by a urologist "no" on this. It doesn't make sense to me. Everyone talks about the body's ability to heal itself, especially in young people. I guess the odds are stacked against us and if there is even a possibility to beat them it will either be through freak luck, or an extraordinary effort...probably both.

[nemo]

Al, I'm hurting for you brother, reading your message.  Have you considered a trip to see Dr. Lue or Dr. Levine?  I know it's expensive, but perhaps you could borrow money from a relative or something.  Just a thought.  Apparently, finding a urologist who knows how to even speak intelligently about Peyronies Disease is like trying to find a needle in a haystack.  At least with Lue and Levine, you know you're dealing with qualified experts.  

I wish you the best, man.

Nemo

[Attica!]

Al,
  What was done to you by this "doctor" and his staff of fools is horrible. I would most definitely consult another urologist. If you can't afford to go to one of the super-stars like Levine, anyone would seem to be better than your current one. As far as Trental goes, go to the "Oral treatments..." page and read George 999's post #2807. I stopped taking Pentox after six months because it didn't seem to be doing anything, I guess I was wrong to stop and will probably start taking again. Best of luck. BTW, when I first went to a urologist (who claimed to have treated a lot of Peyronie's patients) I knew more than he did, all from info that I gained from reading these boards.

[LWillisjr]

Alcohen,
It is clear that the 2 urologists you have seen are not able to help you. If I recall correctly there is another urologist you saw before this guy. Don't get discouraged, but you need to get to a sexual "specialist" not a sexual "counselor" IMHO. Also, seeing a Peyronies specialist like Dr. Levine or Dr. Lue (or others) is a step in the right direction. But don't be so convinced you have Peyronies. The conditions are similar but you might be chasing a blind alley on this. Your symptoms are similar to Peyronies but are not definitive.

1. Tendon like cord (does not indicate Peyronies)
2. Puffy like pea-sized mass (does not indicate Peyronies)
3. Inability to to void urine (does not indicate Peyroines)
4. Restricted steam of semen ejaculate (does not indicate Peyronies)

And the fact that "He said that there was no scar tissue that showed up " would also indicate that you might not have Peyronies. I'm not trying to be negative but trying to get you on the right path of diagnosis. The one thing this doctor did do finally is to consider what might be wrong with your penis. If I recall this was the guy who thought you were a sex starved teenager.

Don't get me wrong, I'm convinced you have some type of physical condition or problem. Whether it is a penile fracture infection, or prostate condition. But clearly this isn't the doctor to diagnose it. You need to get to a different doctor. I know this is depressing but many of us were on the same journey of one doctor after another until we find the one.

Les Willis

[alcohen]

Thanks for the replies.  Willis, this is actually the third uro I have seen.  The first two of which were both very unhelpful and did give me the "sex starved teenager" mentality.  Before that I had been to a general practitioner who had diagnosed me with genital herpes and told me that if I had gotten to him sooner he might have been able to help but unfortunately I should have been more careful sexually.  He was very badly wrong.  The first uro I went to, after a third visit and lots of Levaquin later pronounced me "completely and 100% back to normal".  He said that this was clearly a problem in my head a sexual counselor would be necessary.  When I mentioned hte pain he just shrugged.  This third uro had seemed nothing but helpful and had acknowledged right from the bat that I had a physical problem and prescribed Pentox immediately saying that it sounded like I had Peyronie's.  

One of the things he discussed with me upon first visit was that Peyronie's often started with patients seeing a pea or disc-sized lump that then spreads and causes pain.  If he had not been helpful duirng that first visit I would have continued my uro search and probably would have immediately sought out Dr. Lue or Levine.  However, this would have been very expensive whereas this uro was only a 2-hour drive away and 15 minutes from my parents house so I would visit them when seeing him.  The first appointment was in August and as I said I had to wait 4 months to have the ultrasound done, during which my penis continued to worsen.  Because from the diagnosed venous leakage, I have had no nighttime erections that I recall and rarely any during the day unless I am actually holding hands with my girlfriend or hugging her, in which case the erection hurts and then goes away.  

During these four months the pain has continued and my penis is clearly much smaller flacid now than it was then.  I can only assume that perhaps some corporeal fibrosis has started due to the lack of blood flow in that area.  

So a doctor and three uro's later, a total of 9 appointments and a lot of money later, I am back where I started but in a worse spot physically...  

Which doctor, Levine or Lue, would you recommend?  I am growing weary of all of this but am glad for the insight that all of you have provided me here.  Any more help would be great.  

[jackp]

alcohen
Have been following your post. It does sound like you have venous leakage and corporal fibrosis. The related penile shrinkage can be an emonitonal roller coaster. I know I have been there. I have had all your symptoms except the pain. With the pain have you tried a VED? If not try it as soon as you can to combat the penile shortening and use Old Mans exercise.
Seems your doctors have not done you any favors. Try the docs recommended here. You are on the West Coast and I am in the Southeast so I do not know of a doctor that can help. I went through 5 urologist before going to Vanderbilt, where I finally got help.
Good Luck and do not quit trying.
Jackp

[George999]

Al,  Sorry to hear that you are going through all of this.  If you are having a problem with your urine stream, you should probably have a simple urine flow test to shag out any urethral or prostate problems.  One the other hand the whole thing with the nodules and the cords sounds VERY typical of Peyronie's to me.  Not everyone with Peyronie's gets these kinds of symptoms but Peyronie's can DEFINITELY cause them.  The nodules are localized areas of inflammation and they can come with or without pain.  When they get really inflamed they can be REALLY painful.  Pentoxifylline will really knock them down well.  The cords are actually bands of fibrous tissue that don't stretch like the normal tunica tissue.  They take longer to deal with.

At this point, I would:

1)  CONTINUE to take the Pentoxifylline.  Hopefully your prescription is for 400mg 3X per day.  Over time this SHOULD help with the pain, IF the pain is Peyronie's pain which is what it sounds like.  The doc who prescribed the Pentox sounds like he has this part correct.  I would not be completely convinced about the issue of venous leakage.  Pain can also cause an erection to collapse prematurely and it seems like this doc wasn't getting it as to the level of pain you were experiencing.  Peyronie's can cause devestating pain.  And when you experience this pain, your libido crashes in flames.  When I first developed Peyronie's, I went for months without a normal erection because of the pain.  Keep taking the Pentox!  Pentox can take a long time to do its work, its a good drug for Peyronie's, keep taking it.  PENTOX WILL PREVENT YOUR PEYRONIE'S FROM GETTING WORSE, DON'T NEGLECT IT!  Also, your Peyronie's has to be pretty advanced to show up on ultrasound.  Its not surprising the doc wouldn't see it on the ultrasound.  That is actually a GOOD sign!  In general, I think Dr Carson is a pretty good Peyronie's doctor.  I would continue on with him for help in dealing with your Peyronie's issues.

2)  Your urine stream issue needs to be dealt with.  The Peyronie's doctor would not be expected to have a clue about this.  He is the wrong doctor for this problem.  For this problem you need to go to a REGULAR urologist and tell him you are having a problem peeing and would like your urine flow checked.  DON'T tell him about your ejaculation issues because they are meaningless.  Ejaculations can be like Old Faithful or drip, drip, drip or anywhere in between for any number of reasons, none of which are medically meaningful.  In other words, it doesn't require treatment.  Urine flow on the other hand IS an important issue and you SHOULD have it checked and evaluated.

3)  You also need to get your Vitamin D levels checked out if you haven't already.  I am increasingly convinced that Vitamin D is really important in dealing with Peyronie's and that normalizing Vitamin D levels to greater than 50ng/ml can help with Peyonie's pain and help correct deformity.  This is something your primary physician should be able to help you with.  Half the population is Vitamin D deficient and I think that is a big factor as to why people are ending up with Peyronie's among other nasty diseases.  GET IT FIXED!

- George

[Hawk]

Didn't you maintain an erection with an ED injection? (or two)

Injections only dilate the arteries.  The drug has NO direct effect on the veins.  As the blood flows into the penis at a high rate the filling penis causes the veins to be relatively sealed by the pressure of the erection.  The flow out is slower than the flown in until a firm erection is maintained.  When the arteries constrict the process reverses.  The shots worked.  When the arteries were dilated the veins were sealed and an erection was obtained.

If I have your account correct, that is not venous leakage.

[LWillisjr]

George,
I understand that several on this forum have nodules and cords associated with their Peyronie's Disease. But anything I have read medically that defines Peyronies seems to focus on defining Peyronies with the formation of scaring and plaque which causes the bend. Could the nodules and cords be something different. I'm not saying this is or isn't associated with Peyronies Disease. For my own knowledge I'm tyring to understand the medical definition of Peyronies.

Does anyone have any links or medical references that mention the leisions and cords as being Peyronie's Disease?

[Hawk]

My suspicion and assumption is that "cords" are nothing more than a pattern of scar tissue.  Just as scar tissue can form in patches or run the circumference of the penis causing hour glass deformity, it can run in a narrow tight band(s) that feels like a cord or cords and are in fact cords of scar tissue running the length of the penis.

[LWillisjr]

But why would they form in such a defined pattern?  What if the "cords" are really something else? I think we need to better understand what these are.  

[Hawk]

But why would they form in such a defined pattern?  What if the "cords" are really something else? I think we need to better understand what these are.

I think the only appropriate solution to understanding any abnormalities on the penis is to have a hands on examination by a urologist skilled in Peyronies Disease issues.  I have however known of deformities referred to as "cords" by a patient to be identified as plaque (scar tissue) by a urologist.  That is not to say that all "cords" are the same condition or that anything a patient identifies as plaque could not be something else.  That is why an experienced doctor is needed.

I know of no case reported on this forum where anyone reporting "cords" ever had them identified as anything other than plaque.

[George999]

I think it is really important to understand that doctors and researchers don't look at disease in the same way as patients do.  Therefore a doctor or researcher would never use a term such as "cord".  When confronted with such a term they would describe it as only a patient's perception of something much more complex going on.  It is really a very subjective description of a band of fibrous tissue.  Why the defined pattern?  Who knows?  Why do some penises bend to the left and others to the right and some just get a bottle neck in the middle.  All caused by the same disease syndrome.  But I can say that I have NEVER heard of anyone complaining about a perceived cord that wasn't at some point in the process diagnosed with Peyronie's.  If you can find someone with a "cord" who has seen multiple Peyronie's specialists who have eliminated Peyronie's from the diagnosis, then I will believe that it can be a different disease.  Or if you can show me any medical literature describing cords a related to any other disease of the penis, I will be equally impressed.  But, at this point they are so intimately associated with Peyronie's I can take no other position than to attribute them to the Peyronie's process.  Not all men get the kind of patterns that produce cords, but many do.  Its all just Peyronie's.  - George

[Tim468]

"Cord" is a specific term that refers to a cord or rope like bundle of scar tissue (when discussing scar tissue). It is a commonly used term by physicians for the same reason it is used by patients - it is descriptive as to the shape of the scar. IT does not confer a different understanding of physiology or anything like that, though.

Tim

[George999]

"Cord" is a specific term that refers to a cord or rope like bundle of scar tissue (when discussing scar tissue). It is a commonly used term by physicians for the same reason it is used by patients - it is descriptive as to the shape of the scar. IT does not confer a different understanding of physiology or anything like that, though.

Tim

Thanks Tim!  I stand corrected.    - George

[Tim468]

You are right, though, about it being a very subjective finding.

Tim

[Fredca]

In response to alcohens remark about urinating etc: I would like to say I have the same problem.

I definitely have Peyronies due to traumatic injury to the penis I can clearly remember.
I have squeezed my penis very hard in flaccid state when I was in panic due to having no feeling in it. You dont have to tell me how stupid that was, as I know all about it.

Ejaculation is somewhat blocked, drips out or just a bit comes out and the rest flows slowly after, also not enough as the amount that has been built up, I just feel more has to come but it doesnt happen. I also hurts a little bit, kind of burning sensation.
Ok but also the urinating is obstructed, and indeed the last bit doesnt come out right away. Personally I dont mind this little part of my disease all that much, though it is definitely uncommon.

Just adding this, because it is said it does not indicate peyronies, though I have this too. I think it is in fact simply peyronie close to or maybe even going around the urine-tube.

For me, peyronie also started like a BB size thingy, though many have formed all over the top of my penis. All of them together in the end made the hourglass effect you read a lot about here, so in response to how this starts, I think it is like this: first one BB is made that makes the tissue not expand anymore, other tissue nearby has to stretch more than designed for, and gets damaged too resulting in all tissue all around getting damaged untill the hourglass is made, ofcourse nothing scientific here just a theory.

In case anyone wonders I want to add I am a 29 male from the netherlands, half a year ago the disease started giving me a cool 45 degrees bend left and a bit up too. I still had good girth on my penis back then, 14cm around it.
Over the past 6 months the situation got a lot worse, I got an indention of in fact all the tissue under the glans, which has started to shrink all around, untill my girth was down to 12 cm, locally and only the top so it looks kinda weird.
The head also rotated a bit around the axis of the penis. And things are still active so it can still get a lot worse.

I have used vitamin E in the past but I stopped as I thought it was bad for me. The BB always seems to be formed near an artery for whatever reason and vitamin E can cause artheriosclerosis. My urologist simply dismissed that, but I wasnt checked on artheriosclerosis.
On advice of urologist I now do not use any medication and simply wait for the disease to be over..
I mentioned pentox to him (after reading here been here for over 4 months now) but he told me "nothing works and I advise you to just sit back and let the disease take its course" I dont think he knows it.
I should find another docter right?

Anyone has some advise to give and a hello to everyone.

[Tim468]

Hi Fredca!

I think that you should get going with the VED and find a new doctor. He may prove to be "right" if nothing you do helps, but you will never know until you try, right?

Tim

[George999]

Fredca,

Welcome!

Next time you see the urologist, you should take with you the three documents archived on this website detailing the benefits of Pentoxifylline.  They indicate that Pentoxifylline is being prescribed for treatment of Peyronie's by two of the leading Peyronie's specialists in the United States.  These are located here and here.  Be sure to indicate to your urologist that Pentox is a new and effective treatment for Peyronie's and hand to him these papers.

Also, you should see your primary care doctor and ask for your blood levels of Vitamin D to be checked.  Recent studies are showing that most people, especially people in higher latitudes like the Netherlands, have dangerously low levels of Vitamin D.  I believe that this can contribute to the development of Peyronie's.  You need to show this doctor this statement by no less than 18 top vitamin D experts:  http://www.prohealth.com/library/showArticle.cfm?libid=14114.  Also show him (or her) this one from Johns Hopkins researchers:  http://www.jhu.edu/~gazette/2008/18aug08/18vitamind.html.  Also, her is an article from the UK on Vitamin D: http://living.scotsman.com/features/A-lack-of-exposure-to.4786499.jp.  All of these articles are VERY current.

The VED recommended by Tim is also VERY helpful!

I wish you the very best in your quest for health!  - George

[despise]

Alcohen,...
Your symptoms are similar to Peyronies but are not definitive.

1. Tendon like cord (does not indicate Peyronies)
2. Puffy like pea-sized mass (does not indicate Peyronies)
3. Inability to to void urine (does not indicate Peyroines)
4. Restricted steam of semen ejaculate (does not indicate Peyronies)

And the fact that "He said that there was no scar tissue that showed up " would also indicate that you might not have Peyronies. I'm not trying to be negative but trying to get you on the right path of diagnosis.

what you are experiencing sounds a lot like what i am experiencing. read my post right before yours. your penis seems hard and almost erect while flacid? when i was flacid before this i was like 2 inches in flacid state. but now i have become like 4 in flacid state. im getting worried if i go to a ER will we not have to pay for it? my skin isn't healing either. i guess they are permanent scars or maybe something else. my main vain on the right is bulging out and whenever i touch my penis it seems hard right under the skin. i even felt pain on the urethra or somewhere. deffenitly not my peyronies disease if my peyronies disease is on my bottom left then why would i have pain around the middle where the urethra is. my urologist is from USC how can they not see this? Do i go to the ER or do i just try to push my urologist to see me again quicker and explain every issues im having in detail?

[Iceman]

fredca - get onto :
1) VED
2) Trental ( Pentox)..... find a doctor who will prescrib\e it

[Fredca]

One thing I want to mention, and am totally not sure of whether this is common, is that my penis is always swollen.

Swollen in the flacid state, at first it had gotten a bit bigger in flacid, which I adressed to the infection of peyronies.

Now, it is almost half erect a lot of time. Also with almost no stimulations becomes 60% erect.
I have all the other symptons of peyronies, the plaque, the curves, and indention.

Only a few days back I realised I may have something else than Peyronies Disease and that being a low-flow priapism, leading to Peyronies Disease due to keeping the same blood in the penis for too long.
This may not be true but I will defninitely point this out to my uro tomorrow, as the swelling of the penis in flacid is not something people mention a lot, then again it may be because they dont mind having a larger flacid penis and it is all just peyronies and very common.

[Hawk]

Fredca,

I am not sure what you meant by the "infection of Peyronies".  But Peyronies Disease is not an "infection" which is an invasion by some organism.  The characteristics of an infection and the treatment of an infection do NOT appy to Peyronies Disease.

You also mention a "low flow priapism" .  I do not believe there is such a thing since priapism by definition is a persistent erection preventing a blood exchange in the penis.  You may indeed have swelling from a condition  or infection not related to Peyronies Disease or you may have a loss of elasticity that can prevent a flaccid penis from contracting as much as normal.

You should see a doctor so he can determine which of these, or what other thing may be wrong.

[jerryw]

George,

Very nice and helpful posting.

FYI, I live in Texas and went to a local urologist, who put me on a series (12) of injections of verapamil into my lesion, but that didn't seem to help at all.  At the conclusion of that treatment, he said that there was nothing else he could suggest by way of a treatment (he was a good enough doctor, but not a Peyronie's expert).  So I saw Dr. Lue in California last May, and he conducted a very thorough exam (with ultrasound).

Lue then prescribed Pentoxifylline, which I've been taking religiously since then.  He told me that it takes quite a while (at least six months) for Pentox to start working, if it's going to work (and it doesn't for everybody).  I saw Dr. Lue again over the recent holidays, and had another ultrasound exam.  Remarkably, the calcium deposits are greatly reduced now, and I no longer have any pain.  I also think that the bend angle is somewhat less now, although that's a personal observation.

I'm extremely pleased that things are clearly improving (although I still have quite an angle when erect).  It was absolutely the right decision for me to go see Dr. Lue, and I would recommend that anyone else with this affliction see a comparable expert.

By the way, a month's supply of Pentox (400 mg, 3x/day) is less than $10 at Costco.

Hope this helps, and just wanted to pass along my own experience.

Jerry

Next time you see the urologist, you should take with you the three documents archived on this website detailing the benefits of Pentoxifylline.  They indicate that Pentoxifylline is being prescribed for treatment of Peyronie's by two of the leading Peyronie's specialists in the United States.  These are located here and here.  Be sure to indicate to your urologist that Pentox is a new and effective treatment for Peyronie's and hand to him these papers.

Also, you should see your primary care doctor and ask for your blood levels of Vitamin D to be checked.  Recent studies are showing that most people, especially people in higher latitudes like the Netherlands, have dangerously low levels of Vitamin D.  I believe that this can contribute to the development of Peyronie's.  You need to show this doctor this statement by no less than 18 top vitamin D experts:  http://www.prohealth.com/library/showArticle.cfm?libid=14114.  Also show him (or her) this one from Johns Hopkins researchers:  http://www.jhu.edu/~gazette/2008/18aug08/18vitamind.html.  Also, her is an article from the UK on Vitamin D: http://living.scotsman.com/features/A-lack-of-exposure-to.4786499.jp.  All of these articles are VERY current.

The VED recommended by Tim is also VERY helpful!

[UK]

Jerry

Good information in your post. I am 2 months into taking Pentox, however I have long standing non-calcified fibrosis (3 years). You didn't mention if yours was recent or long standing, however the fact that you mention calcium deposits makes assume you were past the active phase. How long on Pentox until you noticed some subjective change?
Your feedback would be appreciated as it would give some hope to others.

UK

[jerryw]

I was still in the active phase of the disease when I started taking the Pentox (first noticed the Peyronies Disease about nine months earlier), and think that the Pentox stopped the worsening of my condition.

Frankly, the improvement due to Pentox is very gradual, and you hardly notice it day-to-day -- especially during the first few months.  It seems like nothing is happening.  But after seven months (when I had my checkup with Dr. Lue), it was clear that the size of the lesion and calcification was significantly reduced.  That's not to say that it magically returns things to "normal," as I still have a significant bend and some reduction in length.

I had actually planned to have Dr. Lue perform surgery just before Christmas to help straighten things out, but on his advice scratched the surgery and decided to continue on with the Pentox therapy.  As long as things continue to improve I'm going to wait on the surgery.

Hope this helps.

Jerry
Quote removed because it quoted an entire post just prior to this post - violation of guidelines under "Read this First"
Administration

[Fredca]

I have found a thread elsewhere, where people discuss the phenomenon
1) swollen in flaccid state
2) hardness in flacid state
3) painful urinate

http://www.medhelp.org/posts/show/452831

there are a few suggestions there, but sadly NO ONE again who had that symption diagnosed and cured.
IT is weird that so many ppl seem to have this problem since last year and all are clueless what is causing it, all no answers.
A swollen penis in flaccid is NOT normal and I think it results in the peyronie symptons we have, which is scarred tissue.

I believe my continuous forming of new "pea sized things" that result in the plaque is CAUSED by anything.

IS it even plaque I have?
I have swollen tissue for some time, then it disappears and what leaves behind is a hard scar. THis goes very fast (process of a month?) and nothing like "half a year to stabilize" people discuss here.
There MUST have been people before who had it, and there must be a reason for this to happen. I can not find it though.  

[Iceman]

jerryw - are you in pain at the moment or has that gone away via using pentox

[Tim468]

Abnormal shape or feel to a penis suggests circulatory problems. It is possible that a tumor could do that too. Either demands a full evaluation.

Tim

[Attica!]

alexk
  As far as riding a bicycle, you can get a saddle with the Minkow Wedge. It is a cutout designed to take the pressure off the perineum. I have one and it works.

[Tim468]

Two thoughts. Alex, I agree with what you said, but want to comment on what I did not see you say... he needs to see a doctor.

Also, a recumbent bike allows for better pelvic circulation, or a perineum-sparing seat. All male cyclist should ride that way. I often wonder if my many miles of touring ona bike with a hard saddle contributed to my pelvic region problems.

Tim

[miller798]

I followed up with my uro after my first eval, and after he said that there was not much to be done.  He still had little to add.  Now, three months after that visit, my one sided indentation is progressing to the other side, and I fear a full hour-glass deformity.  Still on Vit E daily as only therapy.  VED would not be acceptable to my wife.

sigh.......

[Old Man]

Miller798:

Well now, it is kind of difficult on you if your wife does not accept your using a VED. If you don't mind what is her main objections to its use?

My wife is somewhat on the prudish side, but after letting her talk to my uro who prescribed its use, she realized the benefits of it. Since a radical prostatectomy rendered me just about totally impotent coupled with venous leakage, the VED proved to be a valuable source of erections.

In addition, add in the Peyronies Disease and the VED therapy successfully got rid of at least 99% of my Peyronies Disease symptoms. You might try getting her to visit this site, especially the women's forum, and see what wives and other significants do for their men.

I am interested in finding what is her objection if that meets with your and her approval.

Regards, Old Man

[Ttdtpafl]

I'm a 39yr old healthy male that injured myself while having intercourse with my long time girlfriend back in July of 2008.  She and I split up in September and shortly thereafter I noticed a pain in my penis when I got an erection.  I went to see a urologist in November and he told after a MRI that I could possibly get Peyronies disease.  I'm scheduled to see him mid Feb to check on things and to see if the problem subsided or if bending is occuring.  Everythng has been fine until 2 weeks ago.  I started noticing that the upper part of my penis has slightly bent downwards and slightly to the right.  I'm not happy with this but could live with it if the pain will finally subside.  I noticed I can't get a full erection because of the pain.  I'm wondering if my penis is going to continue to bend or stay the way it is.  does anyone know when the bending stops and how lng the pain stays there for?  I'm very nervous because I am now single and would be demoralized if it gets worse.  I was laid off from my job and do not have health insurance at the moment.  So, I can't go for my follow up appointment as scheduled.  I'm just really hoping for some basic answers.  Any information would be helpful.  Thank you.

[LWillisjr]

Ttdtpafl,
Sorry to hear of your symptoms. Seems clear that there was some type of trauma from what you described, but don't jump too early to the Peyronies diagnosis. Picking up on your own words your urologist said you "could possibly get" Peyronies disease. I guess there are lots of things we might possibly get.......   And using an MRI to determine Peyronies Disease is new to me. It is usually done through the use of an ultrasound or direct examination by feeling for the plaque. So I guess I would pursue a more precise diagnosis.

That being said....  Those of us who have had this disease can certainly appreciate your fears and concerns. By studying information on this site you will find that it strikes everyone differently. It is hard to say if you will pain, how long, will the pain go away, etc. Some of us haven't had any pain while others have had extreme pain. In some cases it goes away and in others in get worse. Same with the bending. And stabilization results in different ways and various amounts of bending.

Sorry I don't have any quick answers to your questions. But this is a great support group and you are amongst friends. I'm sure others will offer their opinions as well. There are lots of great suggestions here to try whether you eventually diagnosed with Peyronies Disease or not. Especially various things to try particularly to address the pain you are experiencing. The most common drug is Pentoxifylline but will require a prescription from your Uro. See George999 posts as he has lots of good suggestions for health store and over the counter drugs.

[Ptolemy]

Ttdtpafl, if I were you I would get on the VED immediately, using a mild level of vacuum each session. I developed Peyronies after bending during a couple of sex sessions with my girlfriend. I was diagnosed with Peyronies about 6 month later and became aware of the VED 12 months after the diagnosis - 18 months after the sex session. The VED has helped. I also see the VED as therapy that should be applied to a healthy penis to keep it healthy as we age. I also believe that if I was using the VED during the early stages of Peyronies development that the bending and loss of length of my penis would have been much less. These are personal beliefs of mine so take them as that. Listen to others on this forum and do something. There is good advice here.

[Ttdtpafl]

What is VED?  I'm also reading alot about traction.  Should I invest in this device?  Just to clairfy, my doctor told me I have Peyronie's disease.  Thank you for your suggestions.

[jackp]

Ttdtpafl
The VED is a Vaccum Erection Device. My peyronies started in 1995 but did not find out about VED exercise until 10/07. It helped me regain some lost length and made my penis much healthier.
I would suggest that you go to the VED section. There is a ton of information there and Old Man is there to help, he is the pro that helped me.
BTW If your doctor will give you a prescription for a VED for ED your insurance company will probally pay part of the cost.
Good Luck
Jackp

[Ttdtpafl]

What's the advantage of a VED vs a traction device or vice versa?  Thansk for the info.

[Ptolemy]

Ttdtpafl, there is no easy answer. You need to spend time reading the VED and Traction sections and then decide what best suits you.

[Tim468]

Dear Trdtpafl (I sometimes imagine pronouncing these names...):

Under COBRA law, in the US you are entitled to continue your health insurance. Although it is expensive, you would be very well advised to do so; even if it means downsizing your living conditions. If you suffer a more serious medical problem it could bankrupt you for life.

I am assuming that you live in the US - otherwise, you'd have your health insurance basics covered by the government, like most of the rest of the developed world...

Tim

[Ttdtpafl]

The slight curvature and slight indention thus far is in the upper part of my penis(around the head).  Will a traction device work? I'm thinking no.  Also, is Pentox for the pain?