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Welcome to J Francois Eid, MD - Directly answering member questions in the "Medical Professionals" section below the Treatment boards.
https://www.peyroniesforum.net/index.php/topic,17819.0.html

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fartoolong

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Introducing myself
« on: August 24, 2022, 11:05:31 AM »


I have had Peyronies for 10 years and recently seen some improvement through changes in diet that I will post in the improvement section.
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54 years old. First developed Peyronie's in 2012. Tried all the usual treatments without success and generally only got worse. Seeing improvement following a move to a raw whole food plant based diet, plus flax seeds & lots of water in summer of 2022

beaulieu1008

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Re: Introducing myself
« Reply #1 on: September 26, 2022, 03:05:40 PM »

Hello. Could you give us an update? Very curious about your progress.

Thanks
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fartoolong

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Re: Introducing myself
« Reply #2 on: September 26, 2022, 04:50:51 PM »

I've had a really bad month; not because of the Peyronie's or the diet changes, but due to stresses with my family that have caused me a lot of sleepless nights and anxiety. Obviously that isn't an ideal situation for healing and I think it temporarily derailed my progress. I continued with the diet to some extent and definitely avoided any junk food, however my efforts were generally diluted during this period.

Despite some remaining stresses things are slowly coming round to a more normal existence and I'm trying to focus once again on my recovery. One thing for sure is that if you have people around you causing undue stress I think it makes healing just about impossible if you think your life is falling apart.

I will say that despite those difficulties I still think I have made some modest improvement during this time. There has been a slight decrease in the narrowing and judging by the last couple of days an improvement in erections. Assuming life becomes a bit more settled I hope to see more rapid progress over the next month or two.

It's a side issue not associated with Peyronie's, but I have a couple of eye conditions. The first is called blepharitis, which causes horrible dryness and the second is pterygium, which is fatty growth that slowly expands over the surface of the eye and eventually requires surgical removal. These have been a major source of irritation for years, yet both have improved markedly since I made these changes in diet.

The dry eyes are much less prevalent now and the pterygium appears to have shrunk by 50% or more. That is practically unheard of, so I think this diet is helping on a broad basis and not just with the Peyronie's. Sometimes life gets in the way of healing, but I think I am on the right road and just need to focus on this.
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54 years old. First developed Peyronie's in 2012. Tried all the usual treatments without success and generally only got worse. Seeing improvement following a move to a raw whole food plant based diet, plus flax seeds & lots of water in summer of 2022

beaulieu1008

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Re: Introducing myself
« Reply #3 on: September 27, 2022, 09:43:06 AM »

Hello fartoolong.
Sorry about the circumstances. It’s good to read you’re going back to normal and are making some progress. I am considering doing the diet too. Hopefully reducing the curve. Did you make any progress on that?

Keep strong!!
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fartoolong

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Re: Introducing myself
« Reply #4 on: September 27, 2022, 11:04:24 AM »

If we are talking specifically about the last month probably no improvement in upward curvature. My upward curvature wasn't huge previously though and nothing like the early days.

These are the key differences over the last couple of months, which offer a better overview:

1) My erections are massively improved, though from a very poor starting point. Prior to beginning this diet I was practically impotent, especially when attempting to have sex with my wife. I think there was also an element of anxiety not helping that created a vicious circle.

2) I had a fairly noticeable swing to the left when erect and I noticed that has largely disappeared in the last few days.

3) In addition to the left swing the glan twisted to the right if I could generate a half decent erection and that seems to be significantly better as well. The glan now seems much straighter, as it should be, and fills out more when erect.

4) The really soft glan I had previously made penetration very difficult. There is still some softness at the top if I squeeze it, however the softness covers a smaller area at the tip and very hard now over roughly 70%.

The original cause of that softness is uncertain but the effect is unmistakable and I think it is more common with guys who have had Peyronie's for a long time. Obviously I hope that completely fixes itself, but it should already be less of a problem when the rest is more stable.

5) Previously I generally had erections that would die in seconds if I simply turned on my side or stood up and I was embarrassed to even explain this to my wife, so I kept coming up with excuses or just avoiding sex entirely. That seems to be significantly better now, so it is much easier both the obtain and maintain erections. Everything I was reading suggested venous leakage that would require surgery, however it is steadily improving fingers crossed.

6) The hourglass narrowing on the left is clearly much, much better. There is a small pinch at the point where the upward curve starts but there is no longer that long dent cutting in, so the general girth and shape looks much better now and continuing to improve. I suspect this is a large part of why the erections seem more stable now. I guess everything is linked.

7) I do still have scarring extending quite a long way, however it is generally softer than before. It was noticeable that when I was really stressed and hardly sleeping for a couple weeks it was like hard rubber and really showed me that healing in the wrong mental state with bad energy around you is just about impossible.

Given that the upward curvature looks no worse, despite harder erections I hope that actually means there has been some reduction in curvature. The rest of it seems to be gradually returning to the right shape, so it feels like case of patience and persistence.

One other observation I would make is that at a time like this you really want to avoid both emotional or physical trauma. You need a positive calm mindset, while masturbation is likely to make it worse. You also need to be super careful about sex if there is any instability in your erections and avoid any risky positions. Do yourself a favour and avoid watching too much news etc, which is all designed to keep you stressed and stay away from toxic people.

I have had Peyronie's now for over 10 years. Like everybody here I wish I'd never had it but I have to remain positive about these improvements that far exceed anything I've been able to achieve with traction, VED, supplements or prescription medications over a whole decade.

I cannot tell you how it will go next week, next month or next year, but so far it seems to be helping whenever the conditions are right. Also there is the improvement with my eyes and other small clues like my skin looking so much better now compared to before I started. It makes me think there is a lot going on that I might not even realise.
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54 years old. First developed Peyronie's in 2012. Tried all the usual treatments without success and generally only got worse. Seeing improvement following a move to a raw whole food plant based diet, plus flax seeds & lots of water in summer of 2022

FrankPD

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Re: Introducing myself
« Reply #5 on: September 27, 2022, 11:20:57 PM »

Hello Fartoolong,

Glad to hear this!  I started cutting back on carbs for about three weeks now, how long did it take to see changes?  Weeks, months?

Did you post your progress?

Any info is a big help.

Thanks!
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Age 46
No injury
Diagnosis January 2022  
Have plaque
Hourglassing when flaccid and semi-erect
Still have my congenital curve, no severe curving
Massaging with vitamin E cream twice a day 
Low carb diet
Discomfort/aching sometimes
Best to all!

fartoolong

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Re: Introducing myself
« Reply #6 on: September 28, 2022, 03:43:18 AM »

Hello FrankPD, there is information about my progress in the improvements section on the link below. I think the first small changes were noticed after about ten days from memory and picked up from there, but I was not even really doing it right at first.

https://www.peyroniesforum.net/index.php/topic,18244.0.html

I am not cutting back on carbs at all in the sense that vegetables are loaded with carbs. I'll happily eat sweet potatoes or some plain rice for example, but I wouldn't touch white bread or donuts. Cut out all processed foods, alcohol, caffeine, sugar, oils, meat, fish and dairy.

This diet is very basic indeed. Essentially it's lots of water, raw fruits & vegetables and fresh ground flax seeds for the omega 3. You can get creative though. For example, at the weekend I made frozen banana chocolate, which was simply four mashed bananas with 2 tablespoons of raw organic cocoa powder put in the freezer. It was tasty and on point with the overall diet.

My one big advantage was that I was already effectively vegan before this started, so I had no great difficulty switching to a more raw diet. If you are a hamburger and fries kind of guy you would likely find this hard work on your digestion because of the huge jump in fibre and craving your old foods. I would suggest a transition phase over a month or two before really starting, which will also allow your taste buds to adapt. A few years ago I would have found the idea of raw broccoli awful, but now I eat it no problem. Last night my wife was surprised to discover that raw cauliflower is actually quiet tasty.

The doctor who came up with this protocol once said in a video that if you follow this 100% it's a breeze, but if you only do it 95% you will struggle. She wasn't referring to Peyronie's and never has done that I am aware, however there are numerous cases of various autoimmune diseases that have been dramatically improved or totally reversed this way. Most of those conditions are arguably far more serious than Peyronie's, though we also have to contend with tissue scarring.

One point I have forgotten to add is that I have also lost around 6 kilos since starting and that is despite eating huge plates of vegetables and a lot of water. My guess is that processed foods are doing a lot more harm than we realise, even when we often think they are basically healthy.

In one video I saw the doctor expressing her dismay when a young patient had made remarkable progress over six weeks, then gone back to eating fried chicken and watching all those gains quickly reversed. This was a young girl with lupus experiencing awful health consequences just so she could go back to eating her old way. I think we need to obtain our happiness in life from our relationships and experiences; not fast food sellers who want us addicted to salt, sugar, fat and chemicals.

So far it seems that I make regular progress if I am disciplined and it slips when I am not, so I plan to keep going. If I magically see a complete reversal I shall still keep going for several months and only then allow myself some small changes, while sticking with the basics.


EDIT: You should cut out all supplements on this protocol, unless you have a proven deficiency. The only one I take is B12, because modern farming methods mean that fruits and vegetables are cleaned too much, which strips out all the B12 that are normally found in soil microbes.
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54 years old. First developed Peyronie's in 2012. Tried all the usual treatments without success and generally only got worse. Seeing improvement following a move to a raw whole food plant based diet, plus flax seeds & lots of water in summer of 2022

beaulieu1008

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Re: Introducing myself
« Reply #7 on: September 28, 2022, 06:52:05 AM »

Hello Fartoolong

Thanks for all the information! I find it very encouraging and hopeful. Don't know if it's going to work for me. But I will give it a try. The hardest part will be skipping the coffee since I am a coffee addict   ;)

I started ved therapy recently now for my 35 degree upward curve right under the glan. I noticed two weeks ago it had become softer which may explain the difficulties I had with penetration lately. Hopefully that will change too.

Why did you say one has to masturbate less? to have less stress? I think I masturbate more now out of anxiety. Just to find out if everything still 'works'.

Today I started with contemplating reasons to be grateful for. Which there are a lot. Makes life better. Should do that every morning. Keeps life out of peyronies shadow.

Again, thanks for your helpful reply.

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beaulieu1008

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Re: Introducing myself
« Reply #8 on: September 28, 2022, 08:52:20 AM »

Oh. And what sources do you use for your diet.
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fartoolong

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Re: Introducing myself
« Reply #9 on: September 28, 2022, 12:58:14 PM »

I have found it fine to have a cup of decaf in the morning just for the taste and one or two cups of tea, though it's possible/likely I am not helping myself here. I think the real issue is that you want to eliminate anything from the diet that requires resources from the body to process and diverts energies from more productive healing purposes. Drink lots of water. In theory up to 16 glasses a day, though I think my maximum is around 12.

Regarding masturbation we all like it when things are going well, though I think many of us with Peyronie's are at least partly driven by anxiety just to see it is still working or maybe hoping for evidence of some improvement, but I can categorically say masturbation has only ever made it worse for me. When I masturbate the scarring and deformity tends to get worse. I am always left with inflammation after masturbation lasting several hours and if it becomes a regular habit the damage becomes more evident.

It's ironic that when you start to heal the urge to masturbate becomes even stronger, because you want to see those gains and celebrate. We are all tempted to squeeze and check for scarring or inflammation frequently, but again this is counterproductive.

The VED caused me a lot of damage and I threw mine away after a couple of months. Traction was less problematic but just didn't seem to help and it was so time consuming. Unless you are living alone and spend a lot of time at home most of these things are fairly impractical.

One key point is that there is a huge difference between the early stages of this disease and later on when it has supposedly settled. During my first year or so it felt like I could do nothing right. Pentox had me crawling up the wall with anxiety and Cialis caused me major back pain, then pain in the penis as nerves were seemingly irritated. If I add up the money I have spent on supplements over the last 10 years I probably could have bought a new car.

I find my food at the supermarket in the fresh fruits & vegetables section. Go wild here in the sense that you want lots of broccoli, cauliflower and cabbage etc, but also some berries, apples, pears, peaches, sweet potatoes, carrots, kiwi, bananas and anything that helps to deliver a punch of fresh plant based nutrition. As much as possible this should be raw and uncooked. This is the critical part that seems to make the big difference.

The flax seeds come from a local health store where I can buy it in 5 kilo packs for a fairly good price and I just grind up enough to fill half a coffee mug every day. You could also find it on Amazon or elsewhere. Water is water. You can get it from the tap or from bottles.

With all these vegetables and water don't be surprised if you have to get up once or twice in the night, but you should still aim to get a solid 8 hours of sleep. Practice relaxation, gratitude, gentle exercise and stretching. Avoid sitting too much as well. Ten years of this condition has proven to me that sitting is the enemy of healing when it comes to Peyronie's.


** An afterthought. I grind the flax seeds using an electric coffee grinder that you can pick up somewhere like Amazon fairly cheaply. They have to be ground or the seeds just pass right through you without extracting the omega 3. After grinding the omega 3 is lost after a few days, so it is better just to grind them and eat immediately.
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54 years old. First developed Peyronie's in 2012. Tried all the usual treatments without success and generally only got worse. Seeing improvement following a move to a raw whole food plant based diet, plus flax seeds & lots of water in summer of 2022

FrankPD

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Re: Introducing myself
« Reply #10 on: September 29, 2022, 11:07:06 PM »

Fartoolong,

Wow, I have to thank you and I do appreciate your lengthy and well thought out responses!

My carb cutting is really just omitting bread, pasta, and rice.  Trying to stay away from sugar too.  I lost three pounds, weight loss isn’t my goal.  I’m 140lbs now, weight has never been an issue for me.  I call it semi keto, no eating after 5pm gives me about a 15hr fast.  I call it semi because I do like to eat and I still enjoy ice cream on weekends.  I don’t think I can survive with just fruits and veggies.  That banana and cocoa does sound good though.  I do drink a lot of water.  With coffee, half cup in the morning and a cup after lunch.  I do sleep good at night. 

I do agree with sitting is bad, I’ve read that a few times here.  I sold my business over a year ago and haven’t done anything ever since.  A lot more sitting now but don’t just sit on the couch eating either.  Lol.  I do a lot of walking.  I am looking for a job now.

As far as masturbation goes (in reference to beaulieu1008 question), I do believe I gave myself Peyronies by doing that.  I never wanted to admit to myself, def not here.  I had a dry spell after not working, but I’ve never done it excessively or rough!  I give myself like a week or so in between now sometimes longer.  I also believe that if you’re going to do that, using lube is a must.  Can’t afford not to use lube at all.  I also don’t think Peyronies ever stabilizes.  When you have it, you have it.  I had sex one time since my diagnosis and I was more concerned with being careful than enjoying all of it. What exactly is a flair up?  I don’t think I experienced that.  Everyone is welcome to respond.

Thanks for letting me share.
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Age 46
No injury
Diagnosis January 2022  
Have plaque
Hourglassing when flaccid and semi-erect
Still have my congenital curve, no severe curving
Massaging with vitamin E cream twice a day 
Low carb diet
Discomfort/aching sometimes
Best to all!

fartoolong

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Re: Introducing myself
« Reply #11 on: September 30, 2022, 07:06:24 AM »

Definitely stay away from sugar. I haven't added sugar to anything in quite a while and avoid drinks like coca cola, but you would be surprised at just how much sugar is often hidden in processed foods. The food producers are also exceptionally clever at renaming things in lists of ingredients, so they sound harmless.

I think the semi-fast idea is a good one and not just for Peyronie's but for health in general. Far too many of us see repeated spikes in insulin driving inflammation throughout the day through repeated snacking on assorted junk.

On the whole vegetable & fruit thing, I am probably in the 0.1% of men who are willing to really try this and I've only come to it after 10 years, having seen that everything else was largely a pointless waste of time. This is the first thing that shows signs of actually reversing this mess, so I plan to stick with it and see where it goes.

If you are in a relationship, I think you need a supportive partner; somebody who is on your side and willing to get behind your efforts. It took 10 years, but my wife finally gets it I think and that alone helps enormously. This only happened after a really straight talk at a difficult moment a few months ago where I explained just how frustrated I was by the Peyronie's. For far too long it had all just been bottled up and neither one of us talked about it.

I have a theory that the groundwork for Peyronie's and other conditions is partly created and perpetuated by various traumas we might experience in earlier life. My general confidence has taken a hit over the last ten years with Peyronie's, leading to more self-doubt and insecurity in various areas of my life, so I am working on that now alongside the diet part. If you have toxic people in your life they are really not helping you to heal.

On the question of masturbation, we typically have a scarring along the top so running your hand rapidly and repeatedly across the area just doesn't help, annoying as that may be. We are all told we want erections and blood flow to the area, however that happens naturally when we sleep several times during the night in general. When we sleep we heal.

You are still at a fairly early stage in this, however Peyronie's can definitely flair up if conditions allow, just like any other health condition. I think men with Peyronie's focus far too much on physical deformity, because that is what they can see. There is not enough focus on underlying causes that need to be addressed.
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54 years old. First developed Peyronie's in 2012. Tried all the usual treatments without success and generally only got worse. Seeing improvement following a move to a raw whole food plant based diet, plus flax seeds & lots of water in summer of 2022

FrankPD

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Re: Introducing myself
« Reply #12 on: October 01, 2022, 10:58:06 PM »



I haven’t drank soda in over 20yrs, it’s been water with every meal.  Don’t even put sugar in my coffee.  Isn’t fruit high in sugar? 

 I believe stress can contribute.   I can’t imagine not discussing this if I had a partner.  Right now, I talk to my friend I’ve know since second grade.   He’s so curious, asks a lot of questions.  He’s awesome.

I do keep an eye on deformity, I keep a picture log.  I’m also feeling under the skin a lot. 

You’re correct, it’s good for our health.  I’ve been feeling good!  If not for this forum,  I don’t know where I’d be with a diet or my Peyronie’s.  It’s saving me in more ways than one.
 
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Age 46
No injury
Diagnosis January 2022  
Have plaque
Hourglassing when flaccid and semi-erect
Still have my congenital curve, no severe curving
Massaging with vitamin E cream twice a day 
Low carb diet
Discomfort/aching sometimes
Best to all!

fartoolong

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Re: Introducing myself
« Reply #13 on: October 02, 2022, 02:07:44 AM »

Obviously I have spoken about the Peyronie's with my wife, but she has never really asked a lot of questions. As the years roll by with no improvement, communication on the subject seems to grind down through awkwardness and frustration, so I would become reluctant to even raise the subject.

We've been together now for 27 years and over time it seemed to me like there was a lot less affection in general. That's may not be entirely down to Peyronie's, but it sure did play on my mind. Not long before starting this diet she said I should just accept it and that's not how most men think if they are relatively young and otherwise healthy.

For many of us Peyronie's can become all consuming, and I've probably been worse than most. Now I realise you have to focus primarily on health and happiness rather than the disease.

Yes fruit can be high in sugar, however it is moderated by the fibre, so insulin spikes are contained. The caveat is that sugar levels do indeed rise if you also consume dairy, which I have read contain acids that interfere with the process. For the most part though I am focusing on vegetables.
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54 years old. First developed Peyronie's in 2012. Tried all the usual treatments without success and generally only got worse. Seeing improvement following a move to a raw whole food plant based diet, plus flax seeds & lots of water in summer of 2022

FrankPD

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Re: Introducing myself
« Reply #14 on: October 02, 2022, 11:50:34 PM »

Man, I hope my focus on eating better helps me out.

Glad you have someone that understands and you can share this with.

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Age 46
No injury
Diagnosis January 2022  
Have plaque
Hourglassing when flaccid and semi-erect
Still have my congenital curve, no severe curving
Massaging with vitamin E cream twice a day 
Low carb diet
Discomfort/aching sometimes
Best to all!

LWillisjr

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Re: Introducing myself
« Reply #15 on: October 06, 2022, 07:12:55 PM »

This topic has reached its limit of posts for an introductory topic. Feel free to PM the original poster or post questions in other respective areas of the forum.

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Developed peyronies 2007 - 70 degree dorsal
Traction/MEDs/Injections/Surgery 2008
66y/o  14 years Peyronies free
My History
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