PEYRONIE'S TREATMENTS - Questions, Plans & Remarks

[newguy]

You've asked lots of good questions. My first thoughts for your top priorities would be:
1) See a urologist (take evidence for pentox effectiveness from the resource library)
2) Order COQ10 (I take this one: http://www.iherb.com/Healthy-Origins-CoQ10-Gels-Kaneka-Q10-300-mg-150-Softgels/12355?at=0) . You could take a more comprehensive approach (example) but that's up to you.
3) Undertake a physical treatment program too (VED etc)
4) Be patient and use this community for support if you need it.

I see what you mean about advice on the forum sometimes being difficult to follow. Those with peyronie's might be more suseptable to injury, so it's important to take a steady approach. That way you're maximising your chance of improvement.

There are certainly costs involved in treatment, but it is managable, and well worth it should you stop your condition worsening, or improve it. It's quite positive that your condition has not worsenned since the initial change.

[LWillisjr]

bent_2011,
Yes agreed the information here can be a bit overwhelming. But I think if you read it carefully it is not contradictory. And basically there is no magic formula. What works for some doesn't work for others. The top 3-5 things to do in my opinion.....

1. Pentox I believe is the drug of choice. Some take it to relieve pain associated with Peyronies. But it is also known for increasing blood flow and used as a combination therapy to decrease your curvature. (Coq10 is gaining some momentum here recently, but prior to this Pentox was the recommended drug).

2. Use either a traction device or VED. But either have to be used carefully. Many tend to want to overpump with a VED and yes this can cause more problems. So use one or the other but pay heed to the precautions here.

3. Injections.....  mixed reactions. Until recently the injections referred to a drug called Verapamil. At least one of the top Peyronies doctors recommends Verapamil Injections (VI). There are few if any accounts of anyone having improvement from these, although there are a couple of published studies on this. Several here have actually gotten worse from the injections. Now enter a new drug....  Xiaflex. This is in clinical trials now and seems to have some promise of improvement. It is not FDA approved yet and many here are anxiously waiting the results. The delivery method of injecting Xiaflex seems to be very similar to that of Verapamil. So I don't know if the "No needles in my penis" contingent feel any different regarding the Xiaflex results.

4. Don't change your sex habits. Some of what you have seen is that some doctors say take it easy, no sex, etc. These seem to be the same doctors who say "wait and see" or "there is nothing you can do". Well the advice of this forum is that there are therapies you can do, so don't take a wait and see approach. Be proactive with your therapy, and stay sexually active.

5. Positive mental attitude. You may come to find that your mental attitude has much more to do with your weakening erections more that you know. This was the case with me. Stay positive and don't let this wear you down mentally. Your 10-20 degrees is very slight compared to others here. But be positive and proactive s it doesn't get any worse. You can conquer this.

Les

[LWillisjr]

CF, I am indeed taking Cialis daily, about 2.5mg - 3mg.  WG, I bought mine on the net for about $1.50 per 20mg tablet, which I cut up for the 2.5mg - 3mg daily dose.  So it only costs $.20 or so a day.  Definitely keeps things perky down there too!

Would you mind sharing where you get your Cialis from. I'm looking for a good source.

[cowboyfood]

WG,

per Viagra/Cilalis, most people take it before they go to bed and the intended benefit has to do with blood flow and preventing scar progression.  Producing an instant erection is not the purpose.  I used 25 mg of Viagra, nightly right before I went to sleep, for many months after I was first diagnosed.  

I don't want to explain the theory of how it halts progression of Peyronies Disease, because I won't do the real explanation of the theory any justice.

But, fortunately for us, several members including Tim468 and George999 have offered their explanations in great detail over many posts....so, search the keyword viagra using their member name with the advanced search function on the forum.

Regardless of whether you can get great erections naturally, the properties of Viagra can help stop the progression of Peyronies Disease, according to research.

CF

[blackseal]

@lwillisjr:  I bought mine from tabsmarket.com  I checked out the factory that made them (after they arrived) and it is a legitimate company.  And the pills certainly do their job.  For the daily dose, you don't want to take the 20mg.  The pills are a teardrop shape so a real pain to cut in the pill cutter.  I usually get 6-7 mini-pills when I cut one up so my daily dose is 3mg +/-.  The 20mg pills are under $2.00 each depending on how many you buy, so the daily dose is pretty cheap......I would use them again.  Good luck.  

[DannyOcean]

This might be a separate thread but I'm curious about the reasons for taking Cialis daily instead of every other night? My understanding is that Cialis works for a period of 48 hours (this might be only for producing erections though, not for the purposes we here are taking it for). I could understand daily Viagra but Cialis is different no? Mostly concerned with the cost and also potential long-term health issues associated with taking too much Cialis/Viagra (or taking it too often).

[blackseal]

@dannyocean:  I don't know why every day with cialis but this study seems to back it up:  http://www.ncbi.nlm.nih.gov/pubmed/21324095

[DannyOcean]

Thanks blackseal. I guess what I'm wondering is whether whatever property of Cialis that makes it something that lasts for 48 hours is the same thing that would mean you would only need to take it every other day to help with Peyronies Disease. I suppose to be on the safe side maybe taking daily is indeed better (especially if a low dosage).

As to the tabsmarket site you reference, how did you check out the factory? They are a lot cheaper there ($1-2/tab vs. $20/tab elsewhere). When I see stuff that is that far off in price my Spidey-sense starts tingling.

[blackseal]

@dannyocean:  What most people don't realize is that in the USA we spend almost $400B a year on Rx drugs.  $50B of that is on generics.  but generics account for 70% of all prescriptions written.  generic drugs are cheap.  Branded drugs (under patent protection) are not.  Most generics sold in the USA are made in Israel (by Teva) and in India (by a bunch of companies.)  All of these companies which sell generic drugs in the USA have their plants physically inspected by the FDA and have their generic formularies approved.  As to Cialis, it is still under patent protection in the USA.  So the pills made by Eli Lilly run $20 each.  Some countries (like India) don't honor the same patent protections.  So in this case you can have an FDA certified factory making generic Cialis (Tadalafil) which they can make and sell legally in some countries - but not in the USA.  

Viagra for example comes off patent in the USA next year and generic versions will be available overnight at a fraction of the cost.  Cialis is still years away from going generic in the USA.  Hope this helps.

[DannyOcean]

Thanks blackseal. I actually hadn't realized that there was a generic version of Cialis available outside the U.S. The website initially scared me away because it looked a bit shady (didn't ask for a prescription or anything). But maybe you don't need a prescription to buy ED drugs in the UK? Anyway, will investigate this further as it would trim my PDE5-inhibitor tab by 80-90%.

[tod]

I have peyronies.... Lump appeared about four months ago slowly getting bigger and penis bending towards stomach presently 15 - 20 degrees. Its changed twice since onset of lump....

Its quite interesting to me a number of posts saying "I think I might have the condition, please help" I find that interesting because I have absolutely no doubt....... the symptoms are clear, classic peyronies and I know I have it. I wish I was doubtful ! That way the symptoms perhaps wouldnt be so clear !!

Anyway the pain in my erections seems to have eased in last six weeks or so, although the last change in bend was just two weeks ago.

Yes I'm worried but feel if the bend gets bad enough I can have a nesbits and off I go again ! (Life must go on).....

Wife is very understanding and supportive. I'm 47. Fit as a butchers dog. Have years of active sex ahead of me and I want to enjoy it.

Any support or advice you can offer would be most welcomed....

I'm seeing a specialist just next week....having been to a walk in clinic some 8 weeks ago.

I am in the U.K.

[Worried Guy]

Hey Tod,

I'm from the UK and am currently trying Pentox and am about to start VED.  Be warned that most Uro's will tell you to go home and wait 6 months to see what happens.  My first uro did this and it put me into a state of depression.  Peyronies sufferers need to feel like they are being active even if what they are doing has tiny positive effects.  Something is better than nothing and we should be trying to stop it getting worse.  I'm 28 and need my penis to last at least another 40-50 years. I can't tell you if pentox works as i've not been on it long and you may find it hard to get pentox in the UK also.  

[restore]

Tod,

 Just my opinion, but leave surgery as the last option after you're out of the acute phase, and then only if intercourse is not possible.  Personally, since after a botched circumcision I vowed never to have my penis cut on again, surgery is not an option for me.  

[tod]

Thanks Guys,

And good luck to everyone.... I'm not actually that depressed... perhaps its because my penis is still working (although a bit bent) and I'm expecting to be told to go home on Thursday and wait.... I have some vit. e tablets which I'm taking... I always take a multi vit in the morning anyway for general health and "lets get down to the gym and have a blast" reason.....

I realise surgery is a "last resort" but as a last resort at least there is something !

Anyway thanks again... I'll let you know how I get on on Thursday at the dick doctor !

[newguy]

I'd ditch the Vitamin E. There are positive studies in relation to peyronies for:

Pentoxifylline, COQ10, Acetyl-L-Carnitine, Cialis.

Of those I would describe pentox as essential.

[chefcasey]

Well it's been a couple months since I've posted on my progression, and I didn't want to jump the gun to make sure, but it's been about a month of consistency and I can finally state with confidence that I've stabilized.

For months I had been fiddling around with traction and ved, trying to get as many erections as possible to counteract shrinkage, and masturbation about 4 times a week.  After about 6 months of all the pills and regiments and what not, and still being in pain, and still progressing, I sort of threw in the towel.  I stopped all mechanical treatments, and cut down to masturbation only once a week.

I did however stick religiously to pentox, coq10, L-arginine, fish oil, vit d3, and a went through 2 bottles of ibuprofen to try to finally quell this inflammation.  I also consumed a ton of antioxidants in the form of blueberries, raspberries, and pomegranite juice, and relying SOLEY on nocturnal erections for stretching.  After a full month of this, I can safetly say that pain is gone.  Also, I had been having uti/prostatitis like symptoms while urinating and afterwards, that is also gone.

I just took all of my erect measurements and I am happy to say that I still have not lost any length.  Girth loss is no longer progressing and I measured curvature with a protractor, also no more progression.  

I firmly believe that this disease is at it's root, an inflammatory spiral, and one cannot break the progression until it is stopped.  It's taken 3 months of pentox, and 5 months of coq10, but it has finally started to work.  If you've read my prior posts, you know how I had freaked out at times and almost lost it.  I just want to thank each and every one of you that has given me advice, and strength.  Hang in there guys, there is light at the end of the tunnel.  God bless all of you.

-chefcasey

[newguy]

That's great news. Be sure to stay on the treatments. If progression has stopped, maybe there is room for improvement now.

[George999]

Casey is a great example of how just doing a lot of "right" things and persevering at it can stop this stuff in its tracks.  It takes treatments that are known to work such as Pentox and/or VED PLUS general health and lifestyle changes that reign in systemic inflammation which in turn create an environment in which the Peyronie's treatments can succeed.  - George

[chefcasey]

I was under the impression for a long time that the only way to stop things from getting worse, was to do everything physically possible as far as stretching the scar tissue to see improvement.  All in all, I think that stretching too much whether it's traction, ved, or sexual activity, while still being inflamed kept it in a state of constant inflammation.  I think a lot of new guys get so scared that once they see some shrinkage, they immediately think "I've got to do something about this right now", myself being included.  The logical reaction is to try and stretch things back to normal any way you can.  What I failed to realize is that your own body will counteract shrinkage in the safest way possible while at the same time trying to heal via nocturnal erections.  Don't get me wrong, I think that mechanical therapies have their place in fighting Peyronies Disease, but at least in my case, it definitely wasn't the right thing to do in the initial inflammatory stage.

I was thinking about eventually returning to some sort of mechanical therapy, but I'm perfectly satisfied with the path that good lifestyle and oral treatments have given me.  If I can give any new guys advice, take it easy on your penis.  Make getting rid of inflammation your PRIMARY goal.  Use all of the proven supplements on the board, and if need be, take some nsaid's or celebrex along with it for a short while, just to nip it in the bud right away.  Also, don't underestimate the effect exercise has on your body.  Exercise is a great way to kick start your bodys own healing process, as well as producing pain fighting endorphines, and not to mention it's just good for overall health.  And last but not least, maintain a good diet.  What is the use of taking all of these supplements for Peyronies Disease, if all the food you ingest is terrible for you?  Even if it isn't perfect, I think just elimnating a lot of refined sugars and processed foods is a huge step forward.

[Luciano]

Well I am new here, (having Peyronies Disease for nearly 3 years now).
I read a study about cialis: they are saying the ideal dose is 5mg per day.
Actually the "real" cialis comes in so called monthly supplies 30 pills at 5mg each.
They are made for such purpose. I wonder if some of the "parallel suppliers" have also such pills..


@blackseal
i would add an enzyme cocktail like neprinol (they say they have good results with Peyronies Disease)
Luc

[crashbandit]

Good for you chef, that's great. I hope it stays stabalized and does not return. If it is working for you, keep doing it and then when your ready and comfortable to add more stimulae. Do so at a slow introduction and you will know the signs when to back off. Hopefully it just keeps getting better for ya.

I seem to be stuck in this inflammation state right now. No erect curve from it yet! But this pain is a really bummer, there's just no rhyme or rhythm to the pain. May I ask you chef if your pain moves around? The only consistant thing with my pain is that it remains on the left side of my penis. But the pain moves all over the place on the left side. Sometimes near the head or half way down the shaft or more underneath or up on top. Somedays the pain is more or less, whether I have none or more sex, no difference.

I hope your pain dosen't come back like it did for me. Because I did manage to get rid of my pain for a couple months, then alittle bit of rough sex seemed to spark it again.

I hope I can find stabalization one day with my pain without the added curve of course.

[tod]

Okay so I have been to the Doc... and as I thought he said go home and wait.

He was actually quite knowledgable about the decease and a really nice bloke. I showed him a picture of my curve and he examined my lump and he confirmed I had peyronies.... One interesting factor was the fact he said he saw loads of examples of the decease each week going to the clinic and it was more common than most people think.....

As my curve is straight up and about 20 degrees and causing no issue with penetration and the pain is easing he tried to put my mind at rest saying basically best leave alone until it does cause real problems... the knife is deffo something best avoided and only used as a last resort.....

On the topic of oral medication..... All unproven in clinical trials so therefore nothing he can offer really. Vit E at best helps with pain and nothing else.... certainly not the onset of the decease.... He said as my pain has subsided in recent weeks thats a good sign and hopefully the condition will improve.

Whilst he said do nowt, I felt I was listened to, he explained everything I wanted to know and although he has discharged me back to my GP at this point...... (I have private medical care, but still not worth doing owt) he said come back if I need to and if it gets worse to the point I can't have sex.....he will consider the knife....

Good luck guys !  

[Luciano]

This might be a separate thread but I'm curious about the reasons for taking Cialis daily instead of every other night? My understanding is that Cialis works for a period of 48 hours (this might be only for producing erections though, not for the purposes we here are taking it for). I could understand daily Viagra but Cialis is different no? Mostly concerned with the cost and also potential long-term health issues associated with taking too much Cialis/Viagra (or taking it too often).

I asked the same question to my urologist, and he told me following (he simplifies a lot):
Cialis is supposed to work 36 hours (20mg)
taking 5mg would give 36/4 = about 9 hours,
so thats roughly one nights sleep.
The benefit of taking it is making sure you have erections in your sleep opposed to having no erections at all would harm your Penis over a longer period.

(I personally am not so sure about the hours... but somehow the explanation makes sense)

L.

[George999]

Tod,  Your doctor is obviously unaware that ALC WAS demonstrated to be effective in a clinical trial in Italy years ago, although that research left a lot to be desired.  More recently, Pentoxifylline has been proven effective in a very well done clinical trial in Iran and last year CoQ10 was demonstrated to be effective in another very well done clinical trial in Iran.  Both Pentoxifylline and CoQ10 work very well and have totally reversed my Peyronie's which continued to advance for years.  What you do in your situation is up to you, but you very well could end up with the knife if you listen to the docs you are now listening to.  There is lots of money in surgery and they love to do them.  But a lot of Peyronie's surgeries leave the patient scarred for life in more ways than one.  - George

[fubar]

I Was given the same directions by a urologist .He said the stuff was exspensive and that is the truth.So he said to cut the pills in fourths if I could.I was experiencing ED and so I followed his advice.When I was not having erections at night then I would take a piece of the pill.At 24.00$ a pop makes sense.

I quickly realized with the price tag this was not going to work.I found an online pharmacy at 3.00$ a pill I now take a full 20 mgs when needed.I can not tell the difference between brand name or generic.If you feel the need to continue cialis do not worry its out there as a bargain if you want it.

Fubar

[newguy]

It's great that you felt listened to, but it certainly won't hurt you to be as proactive as possible in terms of oral and mechanical therapies. While improvements can take place on their own in some cases, typically not much good comes from a wait and see approach. Pentox and the like would, in my view, put you in a better position.

[George999]

Remember, there is now NEW research showing that Cialis works NOT ONLY by increasing nocturnal erections but ALSO by other previously unknown pathways to actually REDUCE Peyronie's scar tissue.  This indicates that Cialis may have therapeutic qualities that other PDE5 drugs may not have.  In any case for this scar reduction capability to be effective requires continual tissue exposure to Cialis on a 24/7 basis.  - George

[Luciano]

Remember, there is now NEW research showing that Cialis works NOT ONLY by increasing nocturnal erections but ALSO by other previously unknown pathways to actually REDUCE Peyronie's scar tissue.  This indicates that Cialis may have therapeutic qualities that other PDE5 drugs may not have.  In any case for this scar reduction capability to be effective requires continual tissue exposure to Cialis on a 24/7 basis.  - George

Maybe a stupid question, but does that meen wou should take more than 5mg/day?
(36hours / 4 =>9 hours)
something like 1 every 1 and 1/2 days?
Luc

[George999]

These results were achieved with 5mg per day.  That is what I would go for in order to achieve optimal results.  These researchers are the best of the best and they think long and hard when they establish these protocols.  I wouldn't attempt to out think them on things like this.  Taking more is MUCH MORE LIKELY to bring harmful unintended consequences than it is to provide benefit.  - George

[chefcasey]

the only spot of pain I would get was on the left ventral side, running along the corpus spongiosum.  This area would always be inflamed just by gently touching it or after sexual activity.  It seemed to feel just as raw and painful as the first day I noticed it, almost 7 months ago.  It also got much worse when I tried traction, so I quit that and the pain went down to normal.  I then tried the ved, and the same thing happened.  I just decided to give up everything, even sexual activity, and just focus on oral therapies.  Hopefully it won't come back.  I plan on keeping my current plan for a while, then slowly add more normal sexual activity again, that's the best I can think of.  

[tod]

Thanks Guys.... Its good that we can have a good debate on this.. The Pentox was mentioned in the clinic... He certainly didnt mention Iran ! Although he say many were taking Pentox with varied results and thats where the "nothing proven" statement came from....

Can I get Pentox in the UK ?

[George999]

Tod,  Look here -> https://www.peyroniesforum.net/index.php/topic,1004.0.html

That is a text copy of the study from Iran.  It is pretty convincing.  Does everybody benefit?  No.  At least not equally.  But most do.  And really, perhaps all do because it most likely prevents progression and never really gets credit for that.  Doctors are at times incredibly stupid.  They will give a patient Pentox for Peyronie's and Pentox will halt the progression of the Peyronie's.  The patient will come back with no further progression and then the doctor will say that Pentox is useless because they are not any better.  But the same doctor will give the same patient a blood pressure pill and the patients blood pressure will not improve over time, it will only be "under control".  Remove the pill and things will get worse, the same as with Pentox.  But because blood pressure is measurable, they will support its use, but the effectiveness of Pentox is not measurable.  In any case, the Iranian study is PROOF as to that effectiveness.  Additionally, doctors don't worry about "varied effectiveness" when it comes to cancer treatments.  Lots of times they don't work, but doctors keep on prescribing them, often at great expense.  So you are going to need to be assertive and, with the aforementioned study in hand, demand Pentoxifylline as it requires a prescription.  It is an inexpensive, safe, well understood, easy to take medication with relatively minor potential side effects.  As far as dealing with the NHS on it, newguy, UK and a number of other Brits out there can help you on those issues.  But for sure you should be on Pentox unless there is some individual reason not.

There is also the CoQ10 study.  Here is the abstract:

Original Article

International Journal of Impotence Research , (19 August 2010) | doi:10.1038/ijir.2010.20

Safety and efficacy of coenzyme Q10 supplementation in early chronic Peyronie's disease: a double-blind, placebo-controlled randomized study
M R Safarinejad

No oral medication has proved to be clearly beneficial for Peyronie's disease (Peyronies Disease). We investigated the safety and efficacy of coenzyme Q10 (CoQ10) supplementation in patients with early chronic Peyronies Disease. We conducted a randomized clinical trial of 186 patients with chronic early Peyronies Disease. Patients were randomly assigned to either 300 mg CoQ10 daily (n=93) or similar regimen of placebo (n=93) for 24 weeks. Erectile function (EF), pain during erection, plaque volume, penile curvature and treatment satisfaction using patient versions of the Erectile Dysfunction Inventory of Treatment Satisfaction (EDITS) questionnaire were assessed at baseline and every 4 weeks during study period. EF was assessed using International Index of Erectile Function (IIEF-5), and pain was evaluated with a visual analog scale (VAS, 0–10). All patients also responded to a Global Assessment Question, 'Has the treatment you have been taking during this study improved your erections?' After 24 weeks, mean IIEF-5 score, mean VAS score and mean EDITS score improved significantly in patients receiving CoQ10 (all P<0.01). Mean plaque size and mean penile curvature degree were decreased in the CoQ10 group, whereas a slight increase was noted in the placebo group (both P=0.001). Mean index of IIEF-5 in 24-week treatment period was 17.8±2.7 in the CoQ10 group and 8.8±1.5 in the placebo group (P=0.001). Of the patients in CoQ10 group, 11 (13.6%) had disease progression vs 46 (56.1%) in placebo group (P=0.01). In patients with early chronic Peyronies Disease, CoQ10 therapy leads plaque size and penile curvature reduction and improves EF.

Thus, in my opinion, you should be taking CoQ10 as well, or the reduced Ubiquinol form if you are over 40.  CoQ10 is over the counter.  It is expensive and the Ubiquinol form is more expensive.  But it works.  The studies indicate success with both Pentoxifylline AND CoQ10/Ubiquinol, and both of these have done wonders for me over time.  Think about it.  - George

[bend68]

Hello - Here is my story:  In January of this year, having sex.  I think my girlfriend was not quite ready, and I tried to hard to penetrate.  My penis suddenly and painfully bent while making a "crack" noise.  I did a lot of research on-line about penile fractures and figured that was not quite what happened as I did not lose the erection, we were able to continue sex, and it did not have the immediate swelling.  I waited to see a urologist until late February and he concurred that it was not a penile fracture, but I did injure it.  He told me that while it was not Peyronie's Disease, my symptoms and any treatment would be similar to that of Peyronie's.

I have a hard "knob" that can be felt when flaccid.  When erect, my penis bends upward at that spot.  We have continued having sex, not as frequently, as it is still somewhat tender there.  I take vitamin E daily.

I am looking for any advice that might help me understand my condition and what kind of treatment would help.

I appreciate your response.

[Worried Guy]

Do you know why he said it was not peyronie's?  I believe I may have bent my penis during sex and this is why I now have peyronies! Many of the guys on here did the same!  I would say it is the most common cause. It could heal up on it's own though and may just be swelling and not a scar.  I believe myself that you don't have to bend it much to cause damage.  My Uro said it is a genetic disposition which some men have.  I believe it must be because I've seen porn stars bending their fellas much more than I have ever done and they seem to be ok.

[George999]

Bend, I would suggest you get a "second opinion" from a sexual function specialist.  General urologists are hopelessly in the dark when it comes to Peyronie's.  Vitamin E is useless.  You would be much ahead to be taking 300mg of CoQ10/Ubiquinol daily, and hopefully find a physician who will prescribe Pentoxifylline for you until this thing is figured out.  - George

[Worried Guy]

I agree with George on this one! You should try and take some other oral remedies such as Pentox and CoQ10.  Not a great deal of evidence that these work but some of the guys on here it has helped and there is no harm in trying.  It seems weird that the Uro would say you have the symptoms of peyronie's and he is going to treat it like peyronie's.  When I searched on the net I knew I had peyronies because there is not much else it could have been with the symptoms I had.

[George999]

Not a great deal of evidence that these work but some of the guys on here it has helped and there is no harm in trying.

This is not solid evidence?

https://www.peyroniesforum.net/index.php/topic,1004.0.html

And there is a very well done CoQ10 study as well.  Most urologists are totally ignorant of these studies because they don't keep up with research.  They are subject their patients to unnecessary pain and debility as a result.

[Worried Guy]

George, I am currently taking both pentox and CoQ10 and I am really hoping it will help stop progression and possible improve my situation.  That said, there is not much evidence for it.  A well carried out but small study in Iran does not hold that much weight.  Look at the ALC study from Italy.  We grab hold of these studies and hope that it will help us but in reality scar tissue is very hard to treat.  The only real way to improve the situation is VED, traction or surgery.  Levine admitted to chef that he does not hold that much faith in Pentox.  My Uro in London is very up to date and carried out the VED study and he accepts that it is worth a try but is not likely to do much.  There are also studies for hyperthermia which show great benefits but why is nobody suggesting we try it.  Any improvement is amazing even if it is only 5 degrees but I'm not going to convince myself it will solve this crap because it will not.  

[bend68]

Thanks so much for your quick responses.  

If I understand correctly, what you are saying is that I have Peyronies which was caused by my injury.  I think what my Urologist was telling me was that I didn't develop it in a way that he was used to seeing and that normally an injury such as mine would have been a penile fracture, which would have been a much more traumatic injury requiring immediate surgery.  The fact that I could still achieve erections was evidence of that.  The Urologist didn't have much to offer in the way of treatment other than giving it time and taking vitamin E, but during the examination he did bring in one of his colleagues, the resident "pecker expert" to take a look.  The pecker expert is a urologist that had spent a lot of time as an army doctor so had seen many cases of injured and bent penises.  I am due back for a recheck soon and I have a lot more questions for them this time.

The main thing that I want to know, is how long something like this takes to heal and will it heal completely or partially.

Also should note that I am taking Alleve (Naproxen Sodium) daily to help with any inflammation.  I am 42 years old and live in US.

[Worried Guy]

Hey George, I guess I must have got out of bed the wrong side today.  I'm in a bit of pain again which is annoying as I've been pain free for 2 weeks and I thought I had moved into the next stage of this.  I'm also annoyed as my Uro cancelled my appointment for next week and I have to wait another 5 weeks to see him.  I understand what you are saying and uro's should be trying everything as even a little help is better than nothing. Pentox is so cheap that every western country can afford to dish this out and if it stops progression for some men then that is worth it.  Coq10 should also be suggested instead of Vit E.  Lets face it, Dr Lue has been giving out pentox now for 9 years and still it has not caught on and I had to go to 2 Uro's and had to go through the studies with them and tell them all about it.  I just believe Uro's don't see pentox as worthwhile because it only has mild benefits for a small percentage of men.  It's not that they had not heard of it they just thought there was no point.  If you look at the studies the VI injections show better results yet most men on here don't seem to agree.  I've been taking pentox now for 1 month and Coq10 for 2 months so lets hope in the next few months things start to get better.  I'm happy to take it for a year to see if it works and after then I will accept that I will have to try other areas.  I'm due to start VED next time I see my Uro so a combination could be the key to improvement.

[Worried Guy]

Bend, I don't want to say you have peyronie's because you may not but your symptoms seem to point to it.  A trauma followed by hardening and a bend are all classic symptoms. Even if it is peyronies there is a chance it could get better on its own with time. You should go back and see what he says!  

[George999]

All I can say about this is that I have achieved amazing things with my health through mimicking research treatments.  It doesn't always work, but I am extremely happy to get 10% out of it.  It has meant achieving cures or near cures for multiple health issues that multiple doctors swore to me were incurable.  So for those of you who reject that approach, enjoy your malady.  I prefer to do everything in my power to find healing, and I have not been disappointed in that approach yet.  There is absolutely no evidence that Vitamin E helps with Peyronie's in any significant way.  And taking high levels of vitamin E on a sustained basis can result in serious health risks.  And yet the same doctor who refuses Pentoxifylline and poo-poos CoQ10 will instruct the patient to take high amounts of vitamin E.  How stupid is this?  You like this route, you can have it, no way I will board this wagon though.  Now way!  - George

[Worried Guy]

I agree George and I think it is great it has worked for you.  What I think we need to see before we can say for sure that it works and then get the uro's on side is multicenter trials containing over 1000 people rather than 1 study from Iran.  Not that I have a problem with Iran but if the study came from Sweden or Canada for example it may convince more uro's.  These trials are expensive and are unlikely to happen because the experts don't believe oral therapies can help.  Dr Lue needs to be pushing for these trials as he is the one who introduced pentox to us.  I'm guessing he is trying.  Even in the Iran study pentox worked for less than 40% of men and it does not even tell us by how much.  Perhaps the improvements were so small they were negligible anyway but are still shown as positive.  I think it is important to be positive but people should not be convincing themselves, as I did, that pentox will be our savior.  If it helps great but lets be honest it is a stab in the dark.  Better than Vit E anyway as you say.  People give it a go as realistically it is all we have right now. Sorry bend i'm off topic now.

[bend68]

ok, I am not sure if I can glean any advice from your debate.  

But I did look through a lot of other threads in here and went to the Vitamin Shoppe yesterday and picked up CoQ10/Ubiquinol, L-Arginine, and Acetyl L-Carnitine.  I will take these in addition to the vitamin E and see what happens.

Also, my urologist advised me to avoid sex for about a month, which I sort of did - it was very difficult anyway and I lost a lot of interest because of the injury, it made things awkward and sore.  The past few days, however, have been fantastic sexually.  The bending is not nearly what it was.  I am thinking that I am past the painful stage and the more erections and activity I have the better.  My girlfriend is in total support of this method of 'treatment' so I am feeling a lot better about it.

[George999]

Even in the Iran study pentox worked for less than 40% of men and it does not even tell us by how much.

Did you read the full study or just the abstract?  I thought the diagrams and tables in the full study made it pretty clear how effective Pentoxifylline was and I also thought those statistics were pretty impressive.  I also think that the conclusion that it "did not work" for 60% of the study participants is pretty subjective.  1) There is no way we can really know if those 60% may have avoided progression by being on Pentoxifylline, and actually I believe that the comparison with placebo indicates that they did avoid progression.  You would call that "not working", I would disagree.  2)  The study period was for a limited amount of time.  I longer time period would likely have produced better results.

Certainly more studies are needed, but are we to wait years for them before trying an inexpensive and innocuous drug like Pentoxifylline?  Not me!  - George

[chefcasey]

I think the pentox study was the best out of all of them, given the large sample size (something like 220 patients total).  Where there might be confusion on the results is that:

1) the mean duration of people that presented with the disease, being around 12 months or so, I think the same was true with the coq10 studies.  If someone has a fresh case of Peyronies Disease, being let's say < 6 months, the results of only "13% getting worse on pentox" may be quite different, since the disease would most likely be closer to a state of stability with a mean of 12 months.  

2) The degree to which there is actual progression of the disease, meaning continued inflammation of penile tissue and continued formation of new scar tissue vs. contraction of existing scar tissue.  For instance, I may have no more scar tissue than when I first noticed my symptoms, but the existing scar tissue may contract over time, and give the appearance that things are getting worse, even though their not.  Let's face it, scar tissue in all parts of the body has a tendency to contract to some degree.  It may be inevitable that it happens to all of us regardless of treatment within the first few months or so.  If it continues for years on end, then I guess you can conlude that the inflammatory process is continuing.

3)  Measurment error:  I know that a lot of studies measure patients' angles, but I've noticed even when measuring myself, that there is a range of deviation of 5-10 degrees that can occur due to erection quality and all sorts of factors, so there may be some discrepency, not just in these studies, but for all Peyronies Disease treatments.    

I also want to clarify that Dr. Levine doesn't have a lot of faith in any one treatment, which is why he uses VI's and traction along with orals.  The benefits that the majority of men on here see from pentox is definitely incresed erectile quality, prevention of calcification, and stabilization at least in the longer term.  I think there's only a few exceptions that have been on here for years with no stabilization from pentox.  If you see additional resolution of the disease, then I think that's just an extra add on that a lot don't recieve on pentox alone.  just my 2 cents.

[nebula]

My penis curves to the left and has a very slight curve upward. My urologist can feel no plaq, and I've never really experienced pain from it. I've always had a little bit of a curve to the left, but I believe it got worsened after I experienced some trauma about 2 years ago. Or it could just be that I'm just noticing the curve more after having experienced trauma. My urologist speculates that it could just be congenital, but my penis does take on an hour glass shape at times which makes him believe there could be some scarring. I've been taking Pentox for the past 6 months. I also completed 6 months of using a VED a few weeks ago, and have been taking CoQ10 for the past 3 or 4 months. Doing all of this, I have not noticed any change in the curvature of my penis.

My urologist told me the option of the surgery where he would shorten one side of the penis to make it straight is available to me, OR I can keep taking the Pentox. But if I've been taking the Pentox for 6 months and have noticed no change, is it even worth continuing? I just have no idea what to do.  

[fubar]

Nebula

Everyone must make their own decision in their own therapy.How long are you willing to stick with it?There are many here that have had Peyronie's for years that are seeing results with the same therapy you have chosen.From my understanding it can take along time to see results.Once you have surgery it is perminant .No matter what you will  then have to accept the outcome.Then you may pick up where you left off with the therapy you chose ,going back to it.

I do believe that all these things help in this disease.I would give it more time depending on your age and condition of your body and how long you have been living with this.For me I have diabetes and other markers men seem to have that have this disease.At times things get very taxing and think, the hell with it just go get an implant and be done.Having an implant is not out of the question for me as the penis is usually the first thing to go in a man with diabetes. I'm giving therapy more time I have seen subtle changes and that is enough for me. To keep going on.Times get tough and I think this going to drive me crazy.

Friends on the forum who I expressed this torment to help alot.They remind of there inspiring history with this from their post and through personal pm's.I'm reminded that that the  forum is growing rapidly meaning we are gaining recognition and suffers .Making this disease much more visable to the public and researchers. Auxillium has taken interest in our disease most likely for profit.Them spending time conducting this study on Peyronie's is bringing it to the public and other researches are watching.The biggest spotlight on this disease is happening now!

Be sure to take time to make your decision.I know I am, I will continue using what has helped many until I am personally exhausted and see no further use of what I feel is helping now.

Fubar

[nebula]

Thanks for the reply. I'm trying to take my time with it. But I'm just wondering if there's a point for me to continue even taking the Pentox after taking it for 6 months with no signs of improvement. Has it taken anybody on here longer than 6 months of taking Pentox to notice improvement with it?

[crashbandit]

How much of a curve is it? Do you have pain at all? What makes you think you are still injured from your intial trauma 2 years ago, other then a possible little hourglassing or slightly more curve? If your still in your youth, please don't jump the gun, expecially if "it's not that bad." Like Fubar said, once you do the surgery route it's permanant.

How serious are you about surgery? I think surgery is a last resort and there are many things you should try first that could work wonders. But if your curve is inherited, then no amount of anything except surgery is going to help you, other then stretching or VED.