My experience with Peyronie's

When I came down with Peyronie's, it was something I tried to ignore at first. I always had some congenital curvature and just assumed there was something weird going on and it would resolve. I finally had to face the problem while on vacation and my wife began complaining that is was becoming painful for her. By the time we returned from vacation my penis had an almost 90 degree bend to the right.

My family doctor told me I had Peyronie's and sent me to a Urologist in Tacoma, WA. I used topical Verapamil for a while with oral Vit. E, with no improvement. Then a series of Verapamil injections, with no improvement. Finally he suggested and explained a surgery as a last resort, called the Nesbit procedure. I did not want to do that, and my wife agreed with me.

I searched the Swedish Hospital Archives and did a lot of online research. My dad also helped me with the research and we came up with a treatment program that almost completely restored the straightness. I still have a little bit of curvature, but it is really minor and is not any worse than the slight original congenital curvature.

I used traction for 2-3 hours everday for 6 months,
Took 1200 mg. of Acetyl-L-Carnitine
Took Serrapeptase and Nattokinase
Fish OIl
Hot compresses (Hot Water Bottle) & wet washcloth
DMSO/Vit. E/Iodine (SSKI) - (Dr. Jonathan Wright, Tahoma Med. Clinic)

This protocol was time consuming and required a lot of discipline, but it was definitely worth the time and effort that went into it. My wife and I have been subsequently interviewed by Auxilium Pharamaceuticals and will appear in their public awareness video coming out sometime later this year or early in 2014. My personal physician has offered this protocol as an option to patients that have come in to see him, since then.

I am also contributing material to a TV show called Embarrassing Bodies which should be coming out in the same time frame. It is produced by the BBC and should be available to see on Youtube. The Embarrassing Bodies website will have links to my free book posted there.

Report post

18 replies. Join the discussion

Can you provide more detail on the protocol like detailed dosages and about the hot water bottle usage?

Report post

I left out some info. above on Acetyl-L-Carnitine (sorry) It is more bio-available when taken with meals and it does have a 2 year shelf life. Check the date on what ever you purchase. I know that it goes bad, because I had put a bottle on a shelf and forgot it. I opened it after it had been sitting for maybe 3 years and it had a strong Acetic Acid smell. I remember the smell from years ago when I developed film in the dark room and we used Acetic Acid for stop bath.

Report post

Thanks for this most thorough response, John.

Report post

Hi John,

That is great news that you've had success in getting back to almost straight.
If this formula works for others, this will really be something!

Do you still have any pain or is that gone?

Thanks so much for sharing!

Report post

WTF-42 in answer to your question. My pain had resolved by the time I started this protocol. My urologist was ready to schedule Surgery in the next 3 months, as he felt it was becoming stable at that point. I felt a lot of panic about having the surgery and did not schedule it. I just worked with my General Practitioner from that time on. He was aware of all that I was doing and was monitoring my progress.

I think the pain is different for many men. Some have it go away as the plaque calcifies and others I have heard never get relief. It really probably depends on how the plaque attaches to the Tunica Albugenia and then connects to other tissue. If the plaque is deep and goes into the erectile tissue (Corpus Cavernosa) It can always be painful with erections, because it is pulling the tissue in different directions and effects the nerves that signal pain.

My Urologist told me that my plaque was very large and deep, thus the almost 90 degree bend. But fortunately for me the pain resolved on its own after about 6 months.

Report post

Thanks for the reply!

Good for you that you are no longer in pain. I've been going through this for almost 6 months and the pain is still present.
I don't have anywhere near the bend you had as I'm about 25% to the right starting from the middle of the shaft at this point. It has gone from normal (for me) to 25% in the last month after five months of pain only. So I do fear it will progress to the point of making penetration impossible. I was under the impression that aside from surgery which I am seriously afraid of, that there wasn't much to be done once the bending happens. I know that your formula won't work for everyone but I am glad to know that something has worked for at least one person.

What was your average monthly cost with all the supplements your were taking?
How long before you saw some results from the treatment you were doing every day?

Kurt

Report post

Hi Kurt,
I am not able to promote a specific protocol here on Inspire, so I can't really get more specific about the details of the program. I had posted what I took earlier, but the comment was taken off. You can purchase all of the products at Amazon.com for the best prices. The cost is minimal compared to the cost of Surgery.

A note about the pain. In the 1980's I cut my left thumb off in a construction accident. The saw I was using kicked back through my thumb. The thumb was surgically reattached and for a couple of years there was no feeling on The side where they did all of the reattaching of tendons, blood supply and nerves. Now years later I have almost normal feeling everywhere. Over time nerves will grow and reroute around injuries. I believe that is what happens with Peyronie's. It is painful in the acute stages and over time the nerves get used to the different direction the penis is pulling and accepts the plaque as part of the penis. That is why I think the pain diminishes most of the time, but that isn't universal. Some men have pain that does not go away.

If you think about the Tunica Albugenia, it is like the balloon in a water balloon. The Corpus Carvernosa (erectile tissue) is like the water. When you get an erection the blood (water) fills the balloon and it stretches. With a scar (plaque) it would be like putting a dab of glue or tape on the balloon and letting it dry. It would deform around that place, when filled with water. If the glue was to go inside of the ballon,k it would cause the balloon to further deform and curve in ways it was not meant to. The problem is that the erectile tissue has a rich blood supply and the Tunica Albugenia is hypovascular, meaning it has a low blood supply. When micro injuries occur and scar tissue accumulates the low blood flow does not always provide adequate healing and the plaque builds up and causes deformity.

That is the reason I used hot compresses, to stimulate blood flow and soften the collagen in the plaque. I then used DMSO/SSKI/Vit E because SSKI has a small molecular weight and is effective in penetrating the skin membrane with DMSO. SSKI is effective in treating keloid scars, so the reasoning is, when it can penetrate the skin it would be effective in fighting scar tissue beneath the skin, and a heat softened plaque would be more vulnerable, so the SSKI would be more effective. I have had men ask me why not use Serrapeptase and DMSO together. Medical studies found that Serrapeptase does not readily penetrate the skin with DMSO because of its large molecular size and weight. The study was attempting to see how effective Serrapeptase would be in treating subcutaneous inflammation. SSKI/Iodine must be used carefully a couple of drops, 1 or 2 times a day topically will not pose a risk of overexposure.

I began to see some reduction in curvature after 9 weeks of treatment. There was dramatic improvement in 6 months. I began to cut back on the supplements and time spent with traction after that time. After a year I was pretty much done with it all. Men with Peyronie's are always at risk of having it re-occur, so I keep the traction device on standby, just in case. So far so good, I'm keeping my fingers crossed.

Report post

John, the information you provided is very helpful, again thank you for sharing.

Can you tell me which traction devise you used or is that against the rules here?

Report post

Hello John! I am Brazilian, and I'm here researching. I have Peyronie's, due to a relationship with my wife my penis escaped and hit a few weeks later was moderately crooked, it makes about 2 years I'm with Peyronie but feel no pain in the penis, sometimes have difficulty penetrating for being limp.
I joined this site today, and the first statement I read is yours, I'm glad you were able to win. Reading your story I believe will win too. I ordered this week this traction device, then I will start the treatment. hug

Report post

Thank you Jonatan for your comment,
I hope you will beat Peyronie's also. I posted what worked for me, so that other men could read about this and make the decision, whether they wanted to try this same method. I think using hot compresses along with traction is very important for adding new healthy tissue and remodeling the scar tissue. Best wishes for your recovery.

Report post

good afternoon John I just want to know more about treating this awful crap we call PD. Thank you for your time

Report post

Hi John,
You and I communicated a while ago about our conditions. I hope this message /post finds you well.
I am still dealing with my Peyronie's condition ... or trying to deal with it. I have now had this condition for almost 5 years.
I did the Super CP Serum /Vit. E/ DMSO and the Iodine (SSKI) - ( from Dr. Jonathan Wright, Tahoma Med. Clinic) for over 37 months. morning. At the same time I did those I also used moist heat packs as well. After several months i also introduced organic Castor oil to the procedure. It required several hours each morning. While I sat there with all this on me I would do 'Healing' Meditations. I now do these procedures only maybe several times a month. (But I still try to meditate each day.)
Also during the 37 months or so I was also taking large quantities of numerous various supplements that I purchased off Dr. Hersey's site PDI. I was taking these throughout the day some with food and some in between meals. It became very costly.
There was no change in my Peyronie's curvature.
Then I went through the Verapamil injections in the Winter /Spring and Summer of 2012. I endured 21 weeks of these injections. 4 injections each visit (two for the penile block and two for the medication). I had to cover my mouth with a handkerchief to stifle my cries of pain. ( I think I was scary the other folks in the waiting room). Unfortunately after all that there was still no change.
After all that I began using the traction device (after we had communicated) but unfortunately that resulted in bringing on testicle pain so I did not do it consisitently. ( *see below)
Taking a cue from a video I watched from Dr. Levine I have ( in recent months) resumed a daily use of the traction device. 'Trying' to endure 3 to 4 hours each day. ( usually in two hour sessions).
I have also been taking the prescription drug Pentoxiftlline (3 times a day) and the supplement L'ARGININE (two tables twice a day).
I have also continued to take Acetyl-L-Carnitine (500mg once a day.)
I have also been taking Cialis once a day (for blood flow)
At the moment I have stopped' everything' because my PSA has been going up (it is currently 4.7) and I 'thought' (?) that maybe something I was doing or taking 'might' have had a effect (?) on my PSA levels. I will only be stopping 'everything' until my next blood/lab work is done for another PSA reading. So that will only be for a few weeks.
I had a vasectomy back in 1995 and unfortunately I had severe infections following the procedure which lasted (on and off) almost two years. Since then I have had almost constant testicle pain (with some severe flare-ups of what they' think' might be Prostatitis.) Only acupuncture treatments helped to alleviate my intense pain. ( In part it was because of this almost constant pain that I decided to retire from being a Special Education teacher after 34 years. After I retired the testicle pain subsided a bit and it was much more tolerable. (stress seemed to be a factor with my testicle pain) * I mention all this because using the traction device (again) has brought back the severe intense testicle pain once again. I am looking at it as a trade off in the hopes that the traction device 'might' help my Peyronie's condition.
In a few weeks I will resumed almost everything once again.
Would you please tell me what was your source for the Serrapeptase and Nattokinase that you took as well as the Fish oil.??? Was it Krill oil ? I had read that 'that' was better'
Just another piece of information ... This past June I requested and received a scan of the area that has the scar tissue. I was told that my scar tissue/plague had not calcified which I was told was a good thing.

Overall to say I am discouraged would be an understatement.

Report post

Hi Jack,
Wow, it sounds like you have really been through the grinder with all that you have tried, to no avail. One of the things I did with traction that helped with discomfort (it may help with your testicle pain) was to make a soft foam donut that I put between the traction device base and my skin. I had discomfort from the pull on my suspensary ligament after the device was on for a short time. This padding helped to isolate the traction device and the direct pull on the ligament. I just used about a half inch thick piece of soft foam that I cut out with scissors. This may also help you with padding between the device and the tug it causes on your testicles. It is worth a try.
I can't mention brands that I used here in the comments, but you can private message me, and I can tell you what I used. It is good news that your plaque is not calcified, and you have my empathy for what you are going through. Best wishes for improvement in your situation.

Report post

Hi Frontrodder,
PD, as any man who has it will tell you, is devastating to your sexual intimacy, self confidence, and self esteem. The big problem as I see it, is the medical profession does not really have a standard protocol for effective treatment or an effective diagnostic program. My experience with traditional medicine was the protocol seemed to be, medicate and then operate, with no other alternatives available.

A big problem with PD is most causes are assumed to be injuries, either a major event like penis fracture or micro-injuries that build scar tissue over time. But even that is not really known exactly. Some men may develop Peyronie's with no incidence of any kind of injury whatsoever. It shrouds the condition in mystery, and then it isn't something most men want to talk openly about, so it is also veiled in secrecy and an unwarranted sense of shame.

There is nothing to be ashamed of with PD. It just happens to some of us and I know it isn't fair, but neither is life most of the time. When it happened to me, I remember looking at my penis and thinking, "What the heck is happening to my dick, it is twisting and curving, until it looks like it will end up like a pigs' tail." When my doctor told me I had Peyronie's disease, that was a new word, and news for me. I thought he would give me a prescription and everything would go back to normal, after all, that's how most medical conditions are handled, isn't it? I never realized at the time the length of the emotional roller coaster I would be riding on. A really big bummer about PD, is what works for one man, may not work for another. My system of treatment worked for me and has worked for other men, but there are no guarantees, and not every man will benefit, I'm sorry to say.

Be pro-active and don't give up. It is worth trying alternative treatment before undergoing surgery. Many times surgery will preclude attempting alternative treatment, due to permanent sutures in some cases, and sometimes there are complications and negative results with surgery. I think most men would agree that surgery should be the last resort, not something you rush into. I received correspondence from a man that showed my book to his surgeon at Virginia Mason Hospital in Seattle, Washington. his surgeon reviewed the program and told his patient that it made sense to try a low impact approach before spending his money on a costly surgery, that would be irreversible. The man pursued the low impact approach in lieu of surgery. I have not heard back from him, so do not know the results, but he has my best wishes for success.

The most important advice, is to keep a positive outlook on your healing process, and whatever treatment program you pursue. Do not let negative thoughts and despair control your outlook on life. It really helps to exercise your faith and be a fighter. Don't surrender to hopelessness and depression. Positive thoughts and prayer really are powerful in the healing process. Try your best to be optimistic.

Report post

Thank You John. I appreciate your suggestions.

How do I private message you ?

Peace
Jack

Report post

Thanks for the encouragement. Believe it or not I have and do pray about this, I have tried everything else that is within my budget, sometimes its just more important to put food on the table and keep the lights on than it is to pay for medicine. I am always on the lookout for new information about this disease! Thank you for your time

Report post

Thanks Frontrodder,
I know what you mean about keeping the lights on and food on the table. It has been tough since the 2008 real estate and economic collapse for many of us. I'm in construction and it has not been the same since then. I'm a big believer in prayer, and never giving up.

Report post

Dear John

I am currently using 70% DMSO gel mixed with 10 drops of nascent iodine; is this okay as I am not sure if I have mixed enough iodine with the gel. Application is morning and evening with a massage of castor oil one hour after application of the DMSO/nascent iodine. I am following the rest of your regime so hope to see some results over the next few months.

Report post

This journal entry is closed to replies. We close all journal entries after 90 days.

If there's something you'd like to say, here are some things you can do:

Things you can do