PEYRONIE'S TREATMENTS - Questions, Plans & Remarks

[hornman]

Things have been better the last couple of days.  I,m taking 100mg ubiquinol 3x per day and I'm on day 14 of Pentox.  The pain is less and my unit seems to hang with a little more fullness. It's really way too early to know if this will be a fix or not. I have always suffered pain flare ups which resolve only to flare up again.  I am one of those whose glass is always half empty.  If my 30 deg curve goes away and I regain some lost size I will then consider it some progress.  Of course maybe the meds will prevent 30 degs becoming 90degs.  One never knows with this sucky disease.  

[George999]

It will take some time before you get the full benefit from the Pentox and Ubiquinol.  But things should continue to get better for a while and they should definitely NOT get worse.  It just takes persaverence and determination and sticking with the stuff that is known to work, Pentox and Ubiquinol.  - George

[slowandsteady]

At least two supplements improving mitochondrial function potentially help Peyronies Disease: coenzyme Q10/ubiquinol and acetyl-L-carnitine. Pyrroloquinoline quinone (PQQ) is a substance that can give rise to new mitochondria in cells (ref). Mice fed a diet deficient in PQQ have stunted growth and abnormal collagen formation. PQQ is also involved in lysine metabolism.

Natto contains a lot of it (it incidentally also contains vitamin K2-mk7).

Anyway, I thought I'd give it a shot and have some on order. LEF seems to be the only place pumping selling it as a separate product at the moment (link to LEF article).

s&s

[slowandsteady]

Just found the number on natto: 61.0 ng/g. That's more than double of most foods listed, but still a tiny amount. The LEF product contains 10mg. You'd have to eat 164 kg of natto ....

[George999]

At least two supplements improving mitochondrial function potentially help Peyronies Disease: coenzyme Q10/ubiquinol and acetyl-L-carnitine.

So this is interesting.  ALC rejuvenates mitochondria.  I did not know that before.  Hmmm ...  Certainly interesting that TWO mitochondria related substances seem to be helpful with Peyronie's (confirmed at least to some degree by research).  Great observation S&S.

Pyrroloquinoline quinone (PQQ) is a substance that can give rise to new mitochondria in cells (ref). Mice fed a diet deficient in PQQ have stunted growth and abnormal collagen formation. PQQ is also involved in lysine metabolism.

AND, very interesting that you should come up with this one.  I have had my eyes on PQQ for some little while now thinking the same line of thought.  What if ...

Anyway, I thought I'd give it a shot and have some on order.

So you are taking a shot at this one already.  PLEASE update us as you go along as to how this is working out.  Right now I have been too occupied trying to find something to KO my hypertension to be able to spend much time on Peyronie's.

Another thought that has crossed my mind is attempting to supply ATP externally in addition to all/some of the above.  There are a number of very interesting ATP formulas out there.  Interesting possibilities now that we seem to be narrowing something down here.

- George

[George999]

I have just experienced surprising and exciting results from Ubiquinol in combination with Pentoxifylline.  I just ordered PQQ the other day and am looking forward to adding it to the mix.  I think we are really (finally) on to a potential cure for this crap at this point and I can't see how PQQ would do anything but add to the obvious effectiveness of Ubiquinol/Pentox.  - George

[newguy]

Looks like another angle of interest. I will keep a close eye on how this goes for you. It seems like we're at the forefront of trying out some of these supplements for peyronie's. By the way, do we know what the logic was for using COQ10 in the Iranian study? They must have anticipated the possibility of receiving positive results so I'm wondering what that thought was initially based on.

[George999]

The Iranian investigators discussed their reasoning behind the use of CoQ10 in the introduction to their study:

Coenzyme Q10 (2,3-dimethoxy-5-methyl-6-deca-prenyl-1,4-benzoquinone, CoQ10) is a fat-soluble,vitamin-like quinone commonly known as ubiquinone or ubidecarenone. Ubiquinone is reduced to ubiquinole (CoQ10H2) via semiubiquinone radical (CoQ10H).  The fully reduced form of CoQ10 (CoQ10H2) exerts strong effects against the oxidative damage of polyunsaturated fatty acids.  It is to be noted that CoQ10 is known to be the only endogenously synthesized lipid-soluble antioxidant.  Decreased CoQ10 levels in serum, as well as a decrease of the CoQ10H2/CoQ10 ratio, have been demonstrated in diseases associated with oxidative stress. Peyronies Disease is characterized by an initial inflammatory reaction (acute phase) followed by fibrous inelastic scar formation (chronic phase).  Inflammation produces oxygen-free radicals and it could be speculated that as inflammation in an acute or early chronic phase persists, an inability to respond to this with antioxidants may result in disease progression.  CoQ10 is one of the most potent antioxidants, which is used to regenerate other antioxidants (tocopheryl and ascorbate), and may serve important roles in protection against oxidative stress and free radical oxygen damage.  TGF-b1 is a key fibrogenic mediator.  It has been reported that solubilized CoQ10 suppresses the expression of TGF-b1 induced by dimethylnitrosamine in mouse liver and mouse embryonic fibroblast cells.  In addition, CoQ activates NF-E2-related factor-2(Nrf2).  Nrf2 overexpression itself reduces the basal expression of a-smooth muscle actin and TGF-b1.  Therefore, CoQ10-induced Nrf2 activation may suppress TGF-b1 expression.  This study is the first prospective, double-blind, placebo-controlled randomized study on the effects of CoQ10 supplementation in men with early chronic Peyronies Disease.

So, basically, they saw CoQ10 as a logical extension of Pentoxifylline in terms of TGF-beta1 suppression plus massive antioxidant activity.  But Slow and Steady's insights here are, in my thinking, intriguing.  For whatever reason, the Italian team saw benefit from ALC.  And I can attest that I was getting results from ALC over a long period of time and I think others around here were seeing positive results from it as well.  And, as S&S points out, ALC AND CoQ10 both have a mitochodrial connection.  Now put that together with the LEF position that mitochodrial dysfunction is at the root of degenerative disease in general.  Presto!  Now perhaps we can posit that tissue exhibiting mitochondrial dysfunction, in this case the TA, is an accident waiting to happen.  The healing process, in which TGF-beta1 is involved, is a matter of the body eliminating unhealthy tissue and stitching together the surrounding healthy tissue.  But what if there is no healthy tissue to stitch together?  It is like trying to sew up a hole in an old piece of cloth where the surrounding cloth falls apart when any stress is applied to it beyond that of its normal usage.  Its fine until you try to draw it together, then it falls apart.  This is what I see happening with the tissue in question.  So why DOES Co10 suppress TGF-beta1?  Perhaps because CoQ10, with its amazing antioxidant activity, is reinforcing surrounding tissue by strengthening cellular mitochondria, thus finally providing the healing process a starting point?  In any case, I think the link to mitochondria is as important, if not more important, than the link to TGF-beta1 that has long steered Peyronie's research.  Whether that is actually the case or not, of course, remains to be seen.  But even if the link is ONLY to TGF-beta1, just finding another capable TGF-beta1 tool that actually seems to work synergistically with the existing tool is huge progress.  Additionally, as I have noted before, the intro to the study literally DEFINES CoQ10 as UBIQUINONE, not as UBIQUINOL.  The fact that we are able to use the newer UBIQUINOL product instead of the older UBIQUINONE is huge, since most of us are older and would have a difficult time converting all of that Ubiquinone in the first place (which in fact, might well explain WHY we even contracted this disease).  I think we are indeed seeing a tipping point here where actual healing can take place, at least for some of us, as opposed to only being able to stop progression, which has been the most useful result of treatment so far.  But IF the Mitochondrial connection actually has legs (think PQQ!), which I suspect it might, I think we are in for a great ride here in terms of defeating this terrible scourge, and perhaps many other even worse scourges as well.  - George

[restore]

I had a botched circumcision performed at the age of 12 years.  Much bleeding with very tight erections as an adult, scarring on the skin, skin tags, skin bridges, shortened length.  At 49, I'm in my 7th year of using t-tapes to perform "tugging" and have regained much of the shaft skin that was removed, with increased length.  Very happy and fulfulling sex life with my wife.

Just as I am starting to see very positive results with my restoration regimen, I injured my penis, and now have been diagnosed with Peyronie's.  I'm shorter, bent slightly, and have painful erections.  I'm in the acute phase.  So, I've put off my foreskin restoration, and now dealing with a much more concerning problem.  I'm afraid to start back with tugging, worried it might hurt my chances of this Peyronies Disease resolving over time.  Anyone else tugging with Peyronie's?  

Thanks for your forum.

David

[George999]

David,  You are catching this early, that is the good part.  You will find a LOT of help around here.

My advice would be to get yourself on Pentoxifylline, a prescription drug, as soon as possible.  The trick is finding a doctor willing to prescribe it.  For that it will help to know where you are located geographically.  Pentoxifylline is very effective, especially in the acute phase, as it reduces the inflammation, which reduces scarring and virtually stops the progression of the disease.  Many of the world's top Peyronie's specialists are using it.  There is data in the resource section of this forum ( https://www.peyroniesforum.net/index.php/board,10.0.html ), simply look for the stuff referring to Pentox and print it out.  If your local urologist refuses to prescribe it for you, you will need to ask for a referral to a Peyronie's expert who will.  Pentox is safe, inexpensive and effective.  The sooner you get started with it, the better.  The standard dosage for Peyronie's is 400mg 3X per day.

Second piece of advice is to get started on Ubiquinol 100mg 3X per day.  Ubiquinol's less potent cousin, Ubiquinone, has been shown effective against Peyronie's by recent research.  I and others around here are using the above dosage of Ubiquinol and finding it extremely effective.  Ubiquinol is a Japanese drug marketed in the US as a supplement.  It is somewhat expensive, but worth the cost.  Other than that it is safe and effective.  I would get started on it right away.  The faster you pounce in this, the more likely it will be that you can stop it before it does serious damage.  Most urologists do not fully comprehend Peyronie's and recommend waiting to see what happens and then when the inevitable happens, they tell you it is too late to do something about it and now you have to just live with it or have surgery.  Don't wait for that to happen.  Get started with effective treatments NOW.  If you current doc won't help you with this, find one who will.

I wish you the best.

- George

[restore]

Thank you!  I am going to share this info with my Urologist.  I'm fortunate, my current urologist had some ideas for me for treatment.  The first urologist my family doctor sent me to said he believed I fractured my penis and to just abstain from sex for 3 weeks.  I wasn't at ease with that diagnosis, and sought a second opinion.  The urologist I'm seeing now said that I did not fracture my penis which he said is a medical emergency.  He diagnosed me with Peyronie's.  He said to take 1200 IUs of vitamin E each day and that Verapamil cream might be the next thing if needed.  He was very optimistic that I would be one of the lucky where the disease resolves on its own.  Not sure why he feels that way, since I read it's the minority that are so fortunate.  I'm also taking Aceytl-L-Carnitine 1g a day which was not mentioned by either urologist, but have read it might help.  

My biggest concern is how this is affecting my relationship with my wife, and my mood.  I've struggled with depression in the past, and am hoping, and praying, this does not drag me back down into that hell.

I am so glad there is this forum, it helps a great deal to not feel alone in this battle to beat this thing.

thanks again George.

David

[George999]

1)  I have never heard of a verifiable case where Peyronie's has resolved on its own, but most urologists believe this to be true like a religion.  Ask anyone else around here and you will get this same answer.  Anyone!

2)  Vitamin E and Verapamil cream are pretty much worthless long term.  Many on this forum have used them without any significant benefit.  Most urologists believe they are effective.  Patients will tell you otherwise.  I used Vitamin E for a long time with very little benefit.  During the time I was using Vitamin E, the underlying disease was advancing aggressively while Vitamin E was basically masking some of the symptoms.  Only when I finally saw a Peyronie's expert who put me on Pentoxifylline did I see real results.  More importantly, there are NO scientific studies showing clear benefit from the use of Vitamin E OR Topical Verapamil.

3)  ALC is much more potent and actually has therapeutic value.  I used it for a while and experienced benefit.  There is a study by an Italian team showing ALC to be beneficial in the treatment of Peyronie's.  But 1g per day is useless.  You would need at least 3g per day.  And ALC's effectiveness is nowhere near that of Ubiquinol.  No where near.  ALC will not likely stop the long term progression of this disease.

My advice stands.  Show your doc the studies demonstrating the effectiveness of Pentoxifylline and Ubiquinol and challenge him to produce similar independent studies showing Vitamin E and Verapamil effective.  But whatever you do, don't waste your time.  If you don't stop this disease now, even the best treatments later on won't be nearly as effective.  You need to be using the right medications NOW and Vitamin E and Topical Verapamil are NOT the right medications for this disease.  Vitamin E is the old standby that docs who are not up on latest treatments ALWAYS prescribe.  Topical Verapamil is a newer treatment that is supported by one study and challenged by multiple other studies showning no benefit.  But Topical Verapamil is being heavily marketed to urologists by its manufacturer.  These are NOT the right treatment choices.

Here are the links to those studies:

Link to Pentoxifylline Study

CoQ10 Study

Also this one in which Peyronie's expert Dr Lue outlines effectiveness of different Peyronie's treatments:

http://knol.google.com/k/tom-lue/peyronies-disease-acquired-deformity-of/YjC9Puq6/B9bMvg#

Here is some discussion on this site regarding Topical Verapamil.  Read it:

https://www.peyroniesforum.net/index.php/topic,328.0.html
https://www.peyroniesforum.net/index.php/topic,1361.0.html

If you need anymore help in getting copies of these, PM me.  - George

[restore]

Thank you thank you!  I will be aggressive in getting more help with these other treatments.  

What do you think of some of the other oral treatments listed on this site?:

urologycentersal.com/uca-urology-topicsPeyroniesDisease.php


I am in Alabama, and have sent that site a request for an appointment for a 3rd opinion.


David

[George999]

1)  Topical creams are a waste of time.

2)  Pentoxifylline is the generic version of Trental.  Potaba and Colchicine work, but are problematic in terms of side effects.  The others are worthless.

3)  Vacuum Erection Devices work very well and I recommend them, but not for guys with early stage Peyronie's.  Unlike Pentoxifylline and Ubiquinol, they are only a treatment and don't have the potential to actually reverse Peyronie's.

4)  All the rest are so fraught with potential side effects that they should be considered only after the above therapies have failed.

If you can convince them to dispense you Pentoxifylline (generic Trental), that is what will be the best solution for you.  Combine that with over the counter Ubiquinol and you are on your way.  They don't mention Ubiquinol because the study supporting the use of CoQ10 products was just released less than a year ago.  And if that does not prove to be enough, you can always add Vacuum Erection Device therapy later.

- George

[restore]

Relooking at my original subject title, a set back in my foreskin restoration regimen is now the least on my mind!  It sucks that I had gained about an inch in erect length through my restoring efforts, and now with this Peyronie's, have lost that and maybe more.

[Old Man]

Restore:

Did you get my private message to you dated Friday? If you did, give me one back with the information I asked you for, etc.

Old Man

[restore]

Old Man, thank you for the feedback.  I will be getting another opinion as I wrote in a few days from the Urologist Centers in Birmingham, will let you know what they say.  Thanks everyone here for the great advice and this forum.

David

[George999]

Restore,  If you need to start VED therapy at any time, Old Man is the absolute expert around here and he will be able to help you with any issues you encounter.  - George

[restore]

Just had my appt with the Urologist Center in Birmingham, and am pleased to say the doctor put me om pentox right away as well as an oral steroid since he believes I'm early in the inflammation stage.  I will continue with Ubiquinol and the ALC also.  Maybe just my imagination but the lump in my shaft feels smaller and less firm.  But I have noticed the pain has subsided somewhat in my early morning erections.  The doctor encouraged me not to refrain from sex with my wife and just to be careful with certain positions, but do what we like.  He also said to take solace in the fact that I am not alone and have a supportive wife.  I really liked talking to him.  He wants me back in six weeks for a followup.

[George999]

Congratulations!!!  Now finally you are on the right track with a physician who understands Peyronie's and how to treat it.  I know you will be seeing impressive results soon.  I'm so happy for you!  - George

[restore]

thanks to you George and Old Man, as well as others on the forum that got my attention!  This place is a blessing.

[Madigan]

I am in the early stages of Peyronie's Disease (2 1/2 months) and have spent most of my fee time doing as much research as possible for potential treatments. I was fortunate to find this site and am so very thankful for all the excellent advice and support I have been given by many of this site's members, thank you!!

In the last 2 1/2 months I have seen this disease move pretty rapidly; I noticed a thick bump 2 1/2 months ago, waited a month to see a doctor because of embarrassment (stupid me), I finally saw a doctor, he sent me to have an ultrasound immediately, I was given a referral to a Urologist, it took three weeks to get to see him, which ultimately was a big waste of time as he basically said, "You have Peyronie's Disease, check back with me in 6 months and we will see how it has progressed". And this was a doctor?? I was always taught that you should be proactive and catch any illness as early as possible, then start a treatment program immediately. So, that is what I have done...I got on the computer, did my research, found this site and immediately made an appointment with my primary care Physician to see if she would put me on Pentox right away as it was the most highly reccomended possible treatment I found thus far. I was very fortunate as my primary care Physician took a look at the "Iran Pentox Controlled Study" that a few of this site's members suggested I take with me to the appointment, she put me on the medication right away!! At the same time she put in a strongly written request to the medical board that I be allowed to see one of the Peyronie's Disease specialists that were listed on the site that was provided to me by this site's members as well, thanks again guys...

I am now waiting to hear back on the approval of the referral, but in the meantime here is my daily oral treatment plan;

Pentoxifylline - 400 mg. tablet (3) times a day (prescription drug)
L-Carnitine - 250 mg. capsule (1) time a day
L-Arginine - 500 mg. capsule (1) time a day
Vitamin E - 2 units d-alpha Tocopherol with Tocopherols & Tocotrieno capsule (4) each morning
Vitamin D3 - 2000 intl units tablet (1) time a day
Vitamin B12 - 2500 mcg sublingual tablet (1) time a day
Aloe Vera - capsule (1) time a day

I have been taking everything listed above for one week now.

I want to mention that I am already on two other prescribed drugs for many years of depression and anxiety just in case some of the readers are as well;

Clonazepam - 1 mg. oral tablet (3) times a day
Bupropion - 300 mg. oral table (1) time a day

I am hoping that all the years that I have had major anxiety and depression has not somehow manifested itself in me in the form of my Peyronie's Disease. This thought crosses my mind quite often as the human body is known to produce bad things within you when major stress occurs.

I will continue to give updates to my progress using the above treatment in hopes that it will benefit me and in turn benefit others. As soon as I am approved to see the Peyronie's Specialist I will give an update as well as to his thoughts and any new direction for me.

Thank you all again for all your guidance and support!!

[cowboyfood]

Madigan,

Hang in there! Looks like you're taking most of the "forum-endorsed" oral treatments.  You may be missing Ubiquinol and Viagra.

I gather from your earlier posts that you have a curve.  If so, and even if not so, I strongly suggest that you obtain a medical-grade quality VED and use that to keep your tissue stretched out and maintain fresh blood flow.  

Please see many of the VED posts, especially the ones by Old Man, Angus, Newguy, and Tim468.

CF

[Madigan]

Hi CF,

Thank you for your input. I have been holding off starting the VED just until I can see the Peyronie's specialist as I have been told by some members of this site that since I am in the acute stage of the disease it may possibly cause more harm, in turn causing my body to produce more scar tissue / plaque to repair and damage from stretching. I am a little torn on this as I can see both sides of the recommendations. I did get all the information I need from OldMan to order the VED when I decide to start the treatment. Any further thoughts you have would be greatly appreciated.

My Best!!

[George999]

If you get all of the burning inflammation resolved with Pentox and Ubiquinol, the VED may well be OK for you.  But I would get the inflammation quelled first.  - George

[LWillisjr]

Madigan,
I don't know who might have told you to do nothing. I think the "experts" on this forum would tell you to aggessively treat your condition during the acute phase to KEEP THINGS FROM GETTING WORSE. All the advice is here on doctors/specialists, meds (Pentox, etc), traction, VED, etc.

Don't wait.

[MikeSmith0]

Madigan,

That's a good plan you have outlined.  You might want to up some of the arginine and carnitine after seeing how you react in a few weeks (also, I think acetyl-l-carnitine is better...see here:  http://juvenon.com/jhj/vol2no05.htm).  I would also add ubiquinol 100 mg a day, increasing to 300 mg per day... based on a study on ubiquinone (the less active form of ubiquinol)

How long have you been on Clonazepam and what dose?  Clonazepam (most likely, in long term use) interferes with GnRH production which decreases FSH and LH - ultimately decreasing testosterone.  Do you have any symptoms of low testosterone (libido is low, low motivation, tired, low erection quality, lack of morning erections, etc...)?    Can you get your Free T levels checked?  Would your docotor do it?  Dr. Abe Morgentaller (Beth Israel / Harvard) has published papers on the link between Free T and Peyronie's Disease which are pretty suggestive that Low T can be a cause (though aging is the third variable that is hard to rule out).    

[Madigan]

Hi Mike,

Thank you for reading my post and for your input.

I am strongly thinking about adding Ubiquinol to my oral treatment plan as you have suggested. Please see the update that I am going to post tonight as I will have been on Pentox now for two weeks.

To answer your question, I have been on a 1 mg. dose (3) times a day of Clonazepam to treat major anxiety for about 6 months now. Prior to that my doctors have had me on most every known anxiety drug with mixed results for many years now. Funny you should mention them all, but I do have a very low sex drive, low motivation, tired often, poor erection quality, etc.  I think I will follow your advise to have my testosterone level checked, that makes perfect sense.

Much appreciated information....

[MikeSmith0]

Hi Mike,

Thank you for reading my post and for your input.

I am strongly thinking about adding Ubiquinol to my oral treatment plan as you have suggested. Please see the update that I am going to post tonight as I will have been on Pentox now for two weeks.

To answer your question, I have been on a 1 mg. dose (3) times a day of Clonazepam to treat major anxiety for about 6 months now. Prior to that my doctors have had me on most every known anxiety drug with mixed results for many years now. Funny you should mention them all, but I do have a very low sex drive, low motivation, tired often, poor erection quality, etc.  I think I will follow your advise to have my testosterone level checked, that makes perfect sense.

Much appreciated information....

1mg of Clonazepam isn't a lot.  It's unlikely to affect your T levels, but is could do it via the GnRH route in higher amounts long term.  However, that dose is low.  Some epileptic patients can get up to 12 mg per day.  I think klonopin alone can depress your sex drive and erectile capactiy without even affecting your testosterone if you are on it long term...however, I think the benefits of this drug might outweigh the risk if there are no alternatives & the anxiety is that bad.  It's so effective for anxiety - and very rare that a drug works as well as this one happens to work.  It's just too bad there are long term dependence and side effect issues... but SSRIs all have that too - klonopin just gets a worse reputation bc I think people on it for 10 years are really unhappy w/ what happens - memory loss, in particular - is worse than the sexual dysfunction...and it is very hard to get off.  However 1 mg is not a lot at all to get that concerned.  You may get tolerant as time goes on though...try to keep it close to 1 for as long as you can.

By the way, if you have anxiety issues - pentox can make them worse... usually not in the first 2 weeks but if you notice something by the 4th week, you're not imagining it.  Many on here have reported sleep and anxiety issues on pentox, including me.  I reduced my dose to 800 per day and it was a little better but still not free of some sleep issues (waking up a lot at night) and some weird dreams, with some transient daytime anxiety.

[George999]

Mike,  Really, really good post.  I totally agree about Klonopin.  Its absolutely the best drug out there for anxiety.  And I also agree about the Pentox issue.  Enough guys around here have reported anxiety with Pentox to confirm that it DOES cause anxiety issues for some.  Personally, I have experience with both drugs.  I was on Klonopin for nearly a year and it was like magic for anxiety.  I had been on other anxiety drugs and NOTHING works like Klonopin.  Now I am completely off Klonopin for a number of years and on Pentox and the anxiety (which I suffered from for years) has not come back even with Pentox.  Dealing with a whole lot of issues like Vitamin D levels was helpful in getting rid of anxiety.  Also, aloe vera gel fixed my heart palpitations which GREATLY relieved my anxiety.  A lot of things can cause anxiety.  Heart issues, acid reflux (possible Pentox connection?), and a host of other physical problems.  You solve the physical issues and the anxiety vaporizes.  - George

[crashbandit]

Also, aloe vera gel fixed my heart palpitations which GREATLY relieved my anxiety.

I wonder sometimes if I have something wrong with my heart. Also, I've been having trouble with anxiety for the past year.

How can one get tested for heart palpitations? Does heart palpitations cause stinging sensation in the chest?

thanks George

[MikeSmith0]

Mike,  Really, really good post.  I totally agree about Klonopin.  Its absolutely the best drug out there for anxiety.  And I also agree about the Pentox issue.  Enough guys around here have reported anxiety with Pentox to confirm that it DOES cause anxiety issues for some.  Personally, I have experience with both drugs.  I was on Klonopin for nearly a year and it was like magic for anxiety.  I had been on other anxiety drugs and NOTHING works like Klonopin.  Now I am completely off Klonopin for a number of years and on Pentox and the anxiety (which I suffered from for years) has not come back even with Pentox.  Dealing with a whole lot of issues like Vitamin D levels was helpful in getting rid of anxiety.  Also, aloe vera gel fixed my heart palpitations which GREATLY relieved my anxiety.  A lot of things can cause anxiety.  Heart issues, acid reflux (possible Pentox connection?), and a host of other physical problems.  You solve the physical issues and the anxiety vaporizes.  - George

Thanks George.  Out of curiosity, how did you get off klonopin?  It's pretty hard after a year or two.   How does the aloe vera gel work?  Its absorbed systemically from rubbing it on?  That's interesting.  I have had PACs when I was much younger but they went away (nobody knew why I had them or why they are gone - maybe a virus was the thought).  very uncomfortable.  On rare occasions, I get one these days but not clinically significant (a 24 hr monitor wouldn't get it - would need a 2 week monitor).  I took klonopin in many years ago... went off - but needed it on occasion... it's downfall is that it works too well, so it's really hard to stop.  I don't know if I'll ever be 100% without it somewhere in my house.

[George999]

What got me off Klonopin was that I didn't like paying the doctor to prescribe it, although it was working exceptionally well for me.  My primary care physician refused to prescribe it for me.  I think he felt it to be overly addictive.  The doctor who did prescribe it worked mental health issues a lot.  So I discovered Nature's Way Valerian Nightime.  This isn't like any old Valerian product.  It is actually made by a German pharmaceutical company.  In Germany, Valerian is a prescription drug.  So whatever the Germans do to make this stuff work works really well.  It worked better for me on anxiety than the Xanax that my PCP was offering me, and with no side effects either.  I don't use it anymore but I always keep it on hand for emergencies.  The Aloe Vera Gel was oral.  It stopped my palpitations right away after even Metoprolol failed to control them.  Aloe Vera Gel is pretty useful for cardio vascular issues.  It fixes angina, but the docs don't use it because its so cheap and not worth enough to run the necessary trails.  - George

[MikeSmith0]

wow very helpful. i tried valerian ages ago but just felt tired... wasnt a german brand - probably gnc or something.  interesting about aloe too - i had no idea.  thanks (sorry to take your thread off topic madigan!)

[Madigan]

I am in the early stages of Peyronie's Disease (2 1/2 months) and have spent most of my fee time doing as much research as possible for potential treatments. I was fortunate to find this site and am so very thankful for all the excellent advice and support I have been given by many of this site's members, thank you!!

In the last 2 1/2 months I have seen this disease move pretty rapidly; I noticed a thick bump 2 1/2 months ago, waited a month to see a doctor because of embarrassment (stupid me), I finally saw a doctor, he sent me to have an ultrasound immediately, I was given a referral to a Urologist, it took three weeks to get to see him, which ultimately was a big waste of time as he basically said, "You have Peyronie's Disease, check back with me in 6 months and we will see how it has progressed". And this was a doctor?? I was always taught that you should be proactive and catch any illness as early as possible, then start a treatment program immediately. So, that is what I have done...I got on the computer, did my research, found this site and immediately made an appointment with my primary care Physician to see if she would put me on Pentox right away as it was the most highly recommended possible treatment I found thus far. I was very fortunate as my primary care Physician took a look at the "Iran Pentox Controlled Study" that a few of this site's members suggested I take with me to the appointment, she put me on the medication right away!! At the same time she put in a strongly written request to the medical board that I be allowed to see one of the Peyronie's Disease specialists that were listed on the site that was provided to me by this site's members as well, thanks again guys...

I am now waiting to hear back on the approval of the referral, but in the meantime here is my daily oral treatment plan;

Pentoxifylline - 400 mg. tablet (3) times a day (prescription drug)
L-Carnitine - 250 mg. capsule (1) time a day
L-Arginine - 500 mg. capsule (1) time a day
Vitamin E - 2 units d-alpha Tocopherol with Tocopherols & Tocotrieno capsule (4) each morning
Vitamin D3 - 2000 intl units tablet (1) time a day
Vitamin B12 - 2500 mcg sublingual tablet (1) time a day
Aloe Vera - capsule (1) time a day

I have been taking everything listed above for one week now.

I want to mention that I am already on two other prescribed drugs for many years of depression and anxiety just in case some of the readers are as well;

Clonazepam - 1 mg. oral tablet (3) times a day
Bupropion - 300 mg. oral table (1) time a day

I am hoping that all the years that I have had major anxiety and depression has not somehow manifested itself in me in the form of my Peyronie's Disease. This thought crosses my mind quite often as the human body is known to produce bad things within you when major stress occurs.

I will continue to give updates to my progress using the above treatment in hopes that it will benefit me and in turn benefit others. As soon as I am approved to see the Peyronie's Specialist I will give an update as well as to his thoughts and any new direction for me.

Thank you all again for all your guidance and support!!

Here is my first update as to my progress taking the above medications for my Peyronie's;

I have been taking these medications for over two weeks now (18 days). There is not really that much to report as it is still early on in my treatment, but I thought that it would be good to post what I have noticed.

1. I have not felt any decrease in the plaque building up in my penis as of yet. If anything, there has been a small increase in plaque build up. The plaque seems to move around from the base of my penis to mid-point, not sure if others have this happen to them?

2. Yesterday, when I had my last erection, my penis did seem to look less bent. Though when I tried to straighten it with my hand it was less flexible than the week prior. I try to get an erection at least once a day, though when I do I become depressed seeing my bent penis. When erect, my penis is shorter than it was prior to the onset of Peyronie's. I was just over 7" erect, now I am about 6 1/2" erect or a little less.

3. When flaccid, my penis looks normal and straight, though it does seem a little shorter in this state too. You would not be able to tell that I have Peyronie's by seeing my penis in the flaccid state (using the word "penis" so much feels uncomfortable to me, but I will just need to get over that).

4. I have not had any pain associated with my Peyronie's since just prior to the start of taking my oral medications. When I noticed the first sign of Peyronie's (a medium size bump on the shaft of my penis) it was painful when I had an erection or sex. Anything rubbing up against the bump was very painful and uncomfortable. The pain went away about a month after the onset. I still do not have any pain associated with my penis when it is flaccid or erect now that I am on the medications.

5. My energy level does seem to have increased, as has my anxiety level. I can not be sure if my increased anxiety is due to the medications or if it is just due to me having this condition to contend with. Pentox has been said to possibly increase anxiety from what I have read, but I am not saying that it is the culprit for me.

6. My sleep pattern is still the same as prior to taking the medications. I sleep well through the night and wake up feeling rested.

7. I have noticed that when I urinate the stream is not that strong. This has been occurring since the onset of Peyronie's. Since taking the medications there has been no change.

8. My sex drive has definitely decreased since being diagnosed with Peyronie's, I am hoping that some of the supplements I am taking will boost my sex drive, I am being patient. Since I have started taking the medications, I have not noticed any increase in my sex drive. I need to also keep in perspective that now that I have a curved penis, I will most likely continue to feel uncomfortable having my partner see it. Thus, I am more distant.

I take my pills each day at the same time religiously. I am thinking of adding Ubiquinol to my medications starting tomorrow? I will start off with 100 mg. daily and increase to 300 mg. daily in about three weeks.

I was denied by my medical provider to see a Peyronie's specialist who is listed on The Association of Peyronie's Disease Advocates website. His name is Dr. Joel Gelman, and is located in Orange, California. Dr. Joel Gelman's office manager was kind enough to talk to me over the phone about my condition. She told me to visit his website which has a lot of information on his approach to the disease. www.centerforrecontructiveurology.org    My medical provider has referred me to an in-plan urologist by the name of Dr. Feraidoun Khonsari MD. I called his office to see if he sees patients with Peyronie's Disease and his office manager said that he does. I will meet with him next Tuesday to see how good he is, then report back. He is located in Orange, California as well.

That is all for now, I will check back in with another update in about two weeks. I hope that some of the above information is helpful.

[R Igor]

Thanks for the heads up Madigan.  As you know I live in the SoCal region as well so I will be interested in your experience with your upcoming visit to the urologist.  I have found that the amino acids tend to give me energy and depending on the brand, can make me anxious on some levels.

Speaking of amino acids, correct me if I'm wrong but I thought most of the advice on the forum pointed to taking the acetyl l form of carnitine rather than the l form of carnitine, as they are not exactly the same thing.  Madigan, don't accept mine as the authoritative word on this, just wondering if others with more experience with these supplements and peyronies disease could clear this up.  Good luck and look forward to hearing more on your next update.

[Moses]

I am a new member on this forum and joined it to find out more about peyronies. I have a small hard lump at the base of my penis on the top side. I went to my family Dr. and he told me most likely it was Peyronies Disease, he referred me to a urologist. The urologists told me that I had peyronis. He said not much can be done and that it could get better in time or it could get more painful. I don't have any curvature, it is just a little sore around the lump and you can feel some scare tissue going done the length of it (not all the way, just a short distance). When I get a erection it feels a little sore and in a little while the soreness is gone. My brother had Peyronies Disease and he told me that his got better over time and has no problem now. The only thing the urologists told me was take vitamin e 500mg. I don't like taking any medicine unless I have too, so I haven't started taking the vitamins yet.

I am searching for some answers on what to do, I have read several post on the forum. Any suggestions would be very appreciated.

Thanks
Phil

[GS]

moses,

Most of the men on this forum are all about taking supplements, so if you don't even want to take Vitamin E, you are going to be in the minority here.

Probably using a VED or traction device would be the first and the most recommended thing you'll find here other than prescription drugs like pentox and a lot of nonprescription vitamins and supplements.

GS

[Madigan]

I am in the early stages of Peyronie's Disease (2 1/2 months) and have spent most of my fee time doing as much research as possible for potential treatments. I was fortunate to find this site and am so very thankful for all the excellent advice and support I have been given by many of this site's members, thank you!!

In the last 2 1/2 months I have seen this disease move pretty rapidly; I noticed a thick bump 2 1/2 months ago, waited a month to see a doctor because of embarrassment (stupid me), I finally saw a doctor, he sent me to have an ultrasound immediately, I was given a referral to a Urologist, it took three weeks to get to see him, which ultimately was a big waste of time as he basically said, "You have Peyronie's Disease, check back with me in 6 months and we will see how it has progressed". And this was a doctor?? I was always taught that you should be proactive and catch any illness as early as possible, then start a treatment program immediately. So, that is what I have done...I got on the computer, did my research, found this site and immediately made an appointment with my primary care Physician to see if she would put me on Pentox right away as it was the most highly recommended possible treatment I found thus far. I was very fortunate as my primary care Physician took a look at the "Iran Pentox Controlled Study" that a few of this site's members suggested I take with me to the appointment, she put me on the medication right away!! At the same time she put in a strongly written request to the medical board that I be allowed to see one of the Peyronie's Disease specialists that were listed on the site that was provided to me by this site's members as well, thanks again guys...

I am now waiting to hear back on the approval of the referral, but in the meantime here is my daily oral treatment plan;

Pentoxifylline - 400 mg. tablet (3) times a day (prescription drug)
L-Carnitine - 250 mg. capsule (1) time a day
L-Arginine - 500 mg. capsule (1) time a day
Vitamin E - 2 units d-alpha Tocopherol with Tocopherols & Tocotrieno capsule (4) each morning
Vitamin D3 - 2000 intl units tablet (1) time a day
Vitamin B12 - 2500 mcg sublingual tablet (1) time a day
Aloe Vera - capsule (1) time a day

I have been taking everything listed above for one week now.

I want to mention that I am already on two other prescribed drugs for many years of depression and anxiety just in case some of the readers are as well;

Clonazepam - 1 mg. oral tablet (3) times a day
Bupropion - 300 mg. oral table (1) time a day

I am hoping that all the years that I have had major anxiety and depression has not somehow manifested itself in me in the form of my Peyronie's Disease. This thought crosses my mind quite often as the human body is known to produce bad things within you when major stress occurs.

I will continue to give updates to my progress using the above treatment in hopes that it will benefit me and in turn benefit others. As soon as I am approved to see the Peyronie's Specialist I will give an update as well as to his thoughts and any new direction for me.

Thank you all again for all your guidance and support!!

Here is my first update as to my progress taking the above medications for my Peyronie's;

I have been taking these medications for over two weeks now (18 days). There is not really that much to report as it is still early on in my treatment, but I thought that it would be good to post what I have noticed.

1. I have not felt any decrease in the plaque building up in my penis as of yet. If anything, there has been a small increase in plaque build up. The plaque seems to move around from the base of my penis to mid-point, not sure if others have this happen to them?

2. Yesterday, when I had my last erection, my penis did seem to look less bent. Though when I tried to straighten it with my hand it was less flexible than the week prior. I try to get an erection at least once a day, though when I do I become depressed seeing my bent penis. When erect, my penis is shorter than it was prior to the onset of Peyronie's. I was just over 7" erect, now I am about 6 1/2" erect or a little less.

3. When flaccid, my penis looks normal and straight, though it does seem a little shorter in this state too. You would not be able to tell that I have Peyronie's by seeing my penis in the flaccid state (using the word "penis" so much feels uncomfortable to me, but I will just need to get over that).

4. I have not had any pain associated with my Peyronie's since just prior to the start of taking my oral medications. When I noticed the first sign of Peyronie's (a medium size bump on the shaft of my penis) it was painful when I had an erection or sex. Anything rubbing up against the bump was very painful and uncomfortable. The pain went away about a month after the onset. I still do not have any pain associated with my penis when it is flaccid or erect now that I am on the medications.

5. My energy level does seem to have increased, as has my anxiety level. I can not be sure if my increased anxiety is due to the medications or if it is just due to me having this condition to contend with. Pentox has been said to possibly increase anxiety from what I have read, but I am not saying that it is the culprit for me.

6. My sleep pattern is still the same as prior to taking the medications. I sleep well through the night and wake up feeling rested.

7. I have noticed that when I urinate the stream is not that strong. This has been occurring since the onset of Peyronie's. Since taking the medications there has been no change.

8. My sex drive has definitely decreased since being diagnosed with Peyronie's, I am hoping that some of the supplements I am taking will boost my sex drive, I am being patient. Since I have started taking the medications, I have not noticed any increase in my sex drive. I need to also keep in perspective that now that I have a curved penis, I will most likely continue to feel uncomfortable having my partner see it. Thus, I am more distant.

I take my pills each day at the same time religiously. I am thinking of adding Ubiquinol to my medications starting tomorrow? I will start off with 100 mg. daily and increase to 300 mg. daily in about three weeks.

I was denied by my medical provider to see a Peyronie's specialist who is listed on The Association of Peyronie's Disease Advocates website. His name is Dr. Joel Gelman, and is located in Orange, California. Dr. Joel Gelman's office manager was kind enough to talk to me over the phone about my condition. She told me to visit his website which has a lot of information on his approach to the disease. www.centerforrecontructiveurology.org    My medical provider has referred me to an in-plan urologist by the name of Dr. Feraidoun Khonsari MD. I called his office to see if he sees patients with Peyronie's Disease and his office manager said that he does. I will meet with him next Tuesday to see how good he is, then report back. He is located in Orange, California as well.

That is all for now, I will check back in with another update in about two weeks. I hope that some of the above information is helpful.

I am a little late in giving everyone an update as to my progress in my battle against Peyronie's Disease. I posted my first update 28 days ago, please see above.

First, let me let everyone know that since my last report, I have added Ubiquinol to my treatment plan; I take (1) 100 mg. oral gel capsule each day. I started taking Ubiquinol on January 16, 2011.

I have great news to report!!

The plaque that was building up inside my penis has greatly decreased in size!! When I touch the area on my penis where the plaque had originally felt dense and kept increasing in size, I now feel a much a smaller and softer mass. What is left of the plaque has not only softened, but has decreased in width and thickness. These results have me very optimistic about beating this thing!!

Now, when I get an erection, my penis has become even more straight. The curve is half of what it was in the beginning. I do have some tenderness and a little pain once again in the region of the remaining plaque when having sex. I am not sure if this is temporary due to the change in the plaque size and density. Hopefully as the plaque continues to become smaller the tenderness and slight pain will decrease as well. Getting an erection is easier now for me as well, I am more easily arroused, which is a major plus.

My energy level is still increased as mentioned in my last report, and the additional anxiety I was having has subsided back to my usual level.

When I urinate, I have noticed a slight increase in the flow of my urine from my last report.

I did meet with the second Urologist that my medical provider approved me to see. As I mentioned in my last report, he is not a Peyronie's disease specialist. This doctor was more knowledgeable about the disease than the first Urologist I met with, who gave me 5 minutes. He did not tell me anything that I had not already learned about the disease myself, but he did share what he knew and told me about the many surgeries he had performed on severe cases of the disease. He said that the men that he did perform surgery on had very mixed results. In my opinion, anyone that decides to have surgery needs to have it done by on of the Peyronie's Disease specialists, as these surgeries are routine for them and from what I have read, much more successful.

That's it for now....I am just so very happy to be able to report good new to everyone. Again, I am so thankful to the men on this site that have given me such great advise and direction!!

[newguy]

I am a little late in giving everyone an update as to my progress in my battle against Peyronie's Disease. I posted my first update 28 days ago, please see above.

First, let me let everyone know that since my last report, I have added Ubiquinol to my treatment plan; I take (1) 100 mg. oral gel capsule each day. I started taking Ubiquinol on January 16, 2011.

I have great news to report!!

This is great news and put a smile on my face. I'm not one to attribute improvements to speciic treatments, after all it could be that your condition would've improved somewhat anyway, or it could be a combination of the treatments helping and the fact that you got on top of this early. However, it is worth member mentally logging the fact that you added Ubiquinol into your regimen. A handful of positive reports have emerged of late from members, and I think we should aim to see it that develops into a trend over time. It's definitely something that people should add to their regimen in my opinion. If it turns out that it isn't as effective as we hope, then nothing is lost, if it is though, there is much to be gained.

More broadly, your regimen as a whole is pretty comprehensive, and includes pentox which realistically urologists should be clambering to give to those newly diagnosed. It's of note that you haven't even started on any mechanical treatments (ved, traction) and these improvements came about none the less. It makes me think that even without these treatments, you might come out of this relatively unscathed. If you reach a point where improvement stop, at least these are more options to tackle the problem. You're a great example of someone who found the forum early, took on board all of the mainstay treatments, and new editions (coq10 - as a result of the recent positive study) and appears to be in good shape as a result!!

[Brightdog]

I am one of the minority who doesn't take supplements, although I DID take Vitamin E at the onset of the symptoms. None of the doctors I consulted suggested supplements, so I had no idea they were being used until I found this site - and by the time I found this site my condition was too extreme for anything but surgery.

Although my surgery was successful (which does NOT mean I was fully restored to where I was before Peyronnie's -- it only means I can function), I strongly recommend you try the therapies others have found to be useful.

[George999]

The person who started the thread does not want to use medication or supplements.  That basically leaves the VED and Traction as the only remaining alternatives.  Medication and supplements shown to be effective are Pentoxifylline and Potaba, both prescription meds, CoQ10/Ubiquinol, a prescription med in Japan, supplement in US, and Acetyl L Carnitine, supplement.  All these have some research data showing them to be effective for Peyronie's.  But Moses is looking for other alternatives at this point.  - George

[blackseal]

I am new to this board and new to Peyronies Disease.  Short story:  I first felt a bump on the shaft of my penis in October 2010.  My doctor told me to lay off sex and see what happened.  It did not get better.  Saw a urologist for all of 7 minutes in late december.  He told me I had Peyronies Disease, gave me a Viagra sample, told me to take Vitamin E, and see him in 4 months.  Not satisfied with that wait-and-see approach, I became a voracious consumer of information, and found this terrific site.  My GP has been great working with me on this.  

I am now 4 months in to my discovery of my first bump, and while that one seems to have receded, I have a larger plaque on the side of my penis near the top.  I still function fine (but not as well as before), can easily get an erection but have a harder time keeping it firm and erect for long, and have only a slight bend at the tip.  My goal is to stop the progression of the disease in its tracks now, using whatever methods I can, and reverse the still-small damage that has occurred.

Would love feedback from the forum members here on my current treatment plan which is:

Vitamin E 400 IU
Vitamin D 1000 IU
Daily Cialis 2.5mg
L-Arginine 1000mg X 2
Acetyle-L-Carnitine 500mg X 2
CoQ10 300mg (just ordered Ubiquinol)
Pycnogenol 1X
Pentox 400mg X3

Anything else I should add?

What are your thoughts on Verapamil injections (seems to be quite the debate here)

Also penile extenders - and if so where do you get them now that the FDA has cracked down on them?

I am off to see another urologist next week, but, am guessing I have already learned more than he will know.

Thanks in advance for you help, thoughts, advice and support.

[chefcasey]

Blackseal:

Your oral treatment plan looks fantastic.  Be careful with using alc, ubiquinol, and pentox together.  Taking all 3 at once can do a number on your digestive system like they did mine, so I cut out the ALC.  It's different for everyone, but if you start noticing stomach aches, diarhea, or bad gas, it's from that combination.  

I'd stay away from VI's.  They have a pretty bad reputation on this site, and given your minimal amount of plaque, most uro's probably won't even give them to you.

There are a lot of extenders still on the market.  I believe it was just the fastsize devices that were targeted by the FDA for making medical claims.  X4labs, andropenis, sizegenetics, jesextender and others are still around and are basically the same devices as fastsize, with the same amount of tension.

[newguy]

You oral regimen looks very comprehensive indeed. It's very close to my own (though I don't take vitamin E). I definitely think you're on the right track with that and have taken onboard what has worked for others here. That's great!

I agree with chefcasey's words about Verapamil injections. It may well be piushed by urologists, but for me personally, I don't see injections as a first line of treatment. Maybe Xiaflex will prove to be an exception to that, but with VI the results seem to be too mixed to recommend it where only minimal plaque is present.

There are similiar devices to fastsize (andropenis etc), so the issues with fastsize aren't the end of the world.

[Worried Guy]

Blackseal,

Your story sounds similar to mine.  I noticed a lump about 3 months a go now.  My supplements regime sounds very similar to yours and I hope to add Pentox very soon and VED once I've decided to make the purchase. I hope to go on holiday for 2 weeks in March and don't fancy taking it on the plane and getting pulled to one side for an embarrassing conversation.  I have a 1 cm lump close to the head and slight hardening on the otherside.  I have a 10 degree curvature of the head and a slight hourglass shape.  I believe my erections are not as strong, but I'm guessing this could just be because my mind is messed up, as there is no reason why a lump at the end would effect the rest of the penis surly?  I'm glad your GP has been helpful.  Mine said I could leave it or see a urologist.  I really like my GP and I don't really blame him.  You can't expect a GP to be an expert in everything.  My first Uro told me to take Vit E until the pain had gone and just to come back if sex was impossible.

Currently taking

Vit E 600iu
L-Arginine 2000mg
CoQ10 200mg (will up this I think)
Acetyl L-Carnitine 2000mg
Pentox (soon)
VED (soon)


Good luck  

[cowboyfood]

blackseal,

you should consider adding Viagra or Cialis to your oral treatment - search the forum for a ton of information on the PAV cocktail - (Pentox, l-Arginine, Viagra).

Definitely get started with the VED, and I wouldn't give a d*&# what airport inspectors thought.

CF

[bent_2011]

Greetings all, and apologies in advance if this is on the wrong thread...

Thanks much for having this forum and for being willing and able and available to discuss Peyronie's.  There is a ton of great information here......almost too much for a newbie.  My short question is:

If I've had mild-to-moderate Peyronie's for approx 6 months, what are the top 3-5 things I need to do right away?

So far "see a urologist" and "start taking CoQ10" seem on the list.

Longer story: I'm a 34 year old gay man with a partner, but we don't have sex very often at all (THAT's a whole different topic, grr, lol) so I end up masturbating a lot.  This summer one time when I was masturbating I noticed my penis was a little bit different and thought huh, that's weird.  Then the next time it was different again and I thought, this is starting to freak me out.  Then I had sex with my partner and he was like, what's up with the penis? and I said, good question!  By "different" I mean:

Before my erection was
8" length, never measured thickness/girth but was uniform from base to tip, and straight with just the slightest, gradual, even curve to the left.
Now erect I am
a bit over 7", thinner at the base than before, thicker at the glans end than before, with a noticeable, sudden, 10-20 degree bend to the left that starts in the middle of my penis.  (I'm guessing at the number of degrees...I don't own a protractor but maybe I should buy one, haha.)

My flaccid penis looks and feels *exactly* the same.

I did some looking around on-line and decided I probably had Peyronie's.  I discussed at a previously-schedule appointment with my doctor in October; he said it sure sounded like Peyronie's (but he didn't see my erection and I didn't bring pictures, which was probably kinda dumb of me), that it was nothing to worry about, quite common, and there was really no need for treatment since I am functional sexually.  This last statement is true, sort of...my erections are not as stiff as before which makes me annoyed, and I am having a lot of psychological issues around the change from what (in my humble opinion if I do say so myself) was a very nice erection to what is now, in my opinion, rather ugly.  The psychological issues probably aren't helping erection stiffness, of course.

As far as I can tell, the shape of my erection has not gotten more or less bent since the first day it suddenly changed.  And, I'm sorry but I have a really hard time buying the notion that this Peyronie's is due to a penile injury.  I think I'd know if I had suffered a penile injury!  And I have not in any way that I am aware of suffered a penile injury.

So now I am reading on here that this may in fact get worse, but that there are things I can do to help make it better.  I was thinking my case was sort of severe but now I'm thinking it's not.  I am reading that I should have lots of sex, and also that I should not have very much sex or it will get worse.  I'm reading that I should pump, but only with certain pumps, and not too much because pumping could make it worse, and that injections help, or not, and that they can make it worse.  I shudder to think how expensive this all is as well since I'm guessing medical insurance won't cover things like this.

Guys...I'm a little lost    That's why I'm looking for the top 3-5 things you would suggest for right now.

Also, I feel weird asking this but, is there someplace that has a repository of Peyronie's images, so that I can see how mine compares to other cases in severity?

Thanks in advance for your help and support  

[Worried Guy]

Hey CF,

I mean how often would I have to take Viagra?  It's not like I can't get an erection and have good ones during the night.  I struggled a little at the start when I was first diagnosed but this was in my head.  I know there could be some medical benefit when it is combined with Pentox.  I really don't think a Uro in the UK is going to give me it on the NHS.  How much does it cost on the net?

Cheers Ed

[blackseal]

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!