3+ years of relentless research and self-experiments - What worked, what didn't

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Gabriel

Dear guys, companions and brothers,

I'm reporting back after more than a year of silence, where I have been diving into a crazy work session (still ongoing...), and trying to take distance from the obsessive compulsion of researching about Peyronie's in order to find at least a little psychological relief... Did not work that well, but at least I managed to devote the little free time I had to something else than becoming wrazier about my disease.

So, after 3+ years of conventional treatments not working, unsolved symptoms and a billion crazy experiments on my junk, I wholeheartedly wanted to redact a big summary of everything I did that helped or not, hoping that it would provide you solutions or gain of time and energy, i.e. be precious to both newcomers and old bros.

So without further ado, here is what has helped and was has not since the onset of the disease in summer 2017 (hourglassing, dents, length and girth loss, variable but endless pain).






What I tried, but did not help

Side effects or peripheral positive effects are specified in parenthesis; if I don't specify anything after the name of the item, it's that is has juste done nothing noticeable to me


Oral supplements and meds : pentoxyfilline (gave me GI distract, weird sleep); L-carnitine; L-arginin; L-citrulin; Co-enzyme Q10; bilberry extract; propolis extract; gotu kola ("centella asiatica" : great for stress relief though); ashwagandha (but very good for sleep too); passion flower extract (same thing for both stress and sleep); valerian (same thing for stress, but seems effective also for sleep in most people); magnesium (good for sleep); boron; Fibrotek (mix of zinc, vitamin E, Superoxyde dismutase); Glisodin; nattokinase; serrapeptase; pycnogenol; probiotics (change my gut life & life though); sillymarin; ACV; active charcoal; quercetin; bromelain; rutin; fish oil; reishi; gingko biloba; sulforaphane; ginger extract; CBD; fish oil; collagen powder (really effective and great for skin and hair health though); MSM.
--> Surely forgetting 5 or 6 others. Tried each one for a long time, progressively increasing to high and even very high dose.


Topical therapy: scar/penis massaging, along with EVERYTHING liquid that exists on Earth (see my specific topic about it : essential oils, vegetal oils, DMSO... at some point I had some short-lived relief with a special mixture of essential oils, but it never lasted more than a few hours, was super messy and crazy expansive); heat therapie (helped with the cold dick syndrome during traction, but seemed to awaken and foster inflammation in other occasions).


Parasurgical therapy: PRP/HA injections (see my related topic; no benefit other than short lived, and procedure very stressful and mad expansive).


Hormonal therapy: Human chorionic gonaotropin (raised my crazy low testosterone, but that's all).


Diet (became a real nutrition-nerd, watching videos and conferences everyday and trying everything on myself): low carb high fat; ketogenic (1 year straight; see my related topic; great for focus and gut health, but no progression regarding peyronies, and decreasing explosive energy over the months); carnivore diet (6 weeks: perfect for gut health, fat loss and satiety, but felt terrible after the 4th week, and yes I was watching my macros and kcal etc. etc.); high carb low fat vegan (2 months, great for gut – found that only meat or only vegetals in a meal was great for me, but mixing the two feels terrible); high carb moderate fat vegan (1 month, same thing); high carb low fat raw vegan (1 month; great for satiety, fat loss, skin, energy; correlated with a decrease in Peyronies Disease pain, but I'm pretty much convinced this is due to the cofounding factor of starting to use my ESWT personal machine); vegan keto (2 months; as keto, but with MUCH more ketones and a MUCH higher protein threshold before decreasing ketones, like 140-160+g versus 60-80 with animal proteins – and yes, proteins for me does affect tremendously ketones production); all sorts of monodiets (3 to 7 days); intermittent fasting in every way (14/8, 16/6, One meal a day: great for gut health); now stabilised on a whole food plant based diet, with lots of fruits/veggies/legumes and occasional meat and fish, no dairy, no sugar, daily 14/8 IF.
--> Unfortunately, and unlike everything I had been wanting to believe for 2-3 years, none of those diet experiences really changed anything to my Peyronies Disease symptoms. They have, however, profundly changed my life in many ways (for instance, since I have totally eliminated refined and artificial products two years ago with all these experiments, I have not been sick a single day (!!!)); but it's not the topic here ^^.


Alternative therapies: toothbrush method (yes, lol, told you I tried everything); red light, infra-red and near-infrared therapy (studied the stuff deeply, bought a lot of material, consistently tried several of protocols for 2 months; did not do anything for Peyronies Disease, but gave me CRAZY and even excessive erections for the next 24h after exposure, especially at night, along with strange pimples on the skin though).








What I tried and did help

I'm listing here what helped in general, whether it is for the pain, diformity or Erectile Dysfunction (with details in parenthesis)

Oral supplements and meds :
- Tadalafil (= cialis; solves Erectile Dysfunction for me, but absolutely zero benefit on pain or curvature; it's actually quite pain-generating given that it provides me with frequent erections, especially at night, which is indeed painful);
- Curcumax (curcumin+pectin, see my relative post, available on Amazon and everywhere ; relieves pain);
- Boswellia Serrata (same thing);
- Ibuprofene (same thing, but artificial and with long-term side effects, so I don't take it chronically).


Mechanical therapies:
- VED (Augusta medical's one, not the other craps out there; 15 min session 2 times a day for 2 years, then 1 time a day because it was otherwise unsunstainable in psychological terms; definitly helps me limit the loss of girth and maybe loss of size, and certainly fosters good EQ);
- Traction therapy (very ambiguous for me: definitely helped me recover 1cm over around 1,7cm lost, helped a little with EQ, BUT also clearly contributed to re-injuring (with Andropenis, which I do NOT recommend : get Penis Master Pro, it's much better and safer), and is now anyway pretty unusable for me because my last spot of acute inflammation is right under the glans where the head of the device attaches);
- Maybe pelvic massage (yes, by anal way, with a professional therapist: my 3-4 sessions seemed to coincide with a better overall feeling around my junk, and surely a little less pain in that area (including the penis), but I honestly can't estimate how much which contributed to what);
- ESWT (four 100€-sessions at my uros, which made pain significantly subside for 10-15 days before it came back; then, I recently bought a ESWT personal machine from China, which I am still experimenting with; right now I'm having encouraging though ambiguous and uncertain results; I will very soon redact a whole post on this).


Topical therapies:
- Diclofenac cream 4% (prescribed by my uro and specially compounded in a pharmacy: interestingly, does help to allieviate the local inflammatory response after sex or masturbation);
- Cold therapy (via devices like "Therapearl", ie straps containing small marbles that you store inside the freezer, and which are normally designed for wrists or ankle pains related to sports; what I do is that ASAP after having sex or masturbating, I wrap my dick in it, take an Ibuprofene, a curcumax and a boswellia, and then 15 mins later oint my junk with diclofenac 4%: it's a little boring, but it greatly, greatly helps to feel almost normal down there the day after).

--> GREAT UPDATE HERE : absolutely see this post about Hirudoid cream as a game changer : https://www.peyroniesforum.net/index.php/topic,15711.0.html


Diet and lifestyle:
- Being careful not crossing my legs and strangling my pelvic region while sitting all day long at work;
- Wearing loose underwear and jeans (yep lol);
- Quitting coffee and dairy (solved a great part of my unexplained pelvic pain and prostate symptoms such as pee dribbling; nothing exactly related to Peyronies Disease, but I consider it to be nearby enough to be worth mentioning);
- Quitting refined and artificial products (along with coffee and dairy, solved all my painful gastric symptoms, helped with my pelvic-related syptoms, made me lose fat and only fat);
- water fasting for 2, 3, 7 and lastly 15 days (see related post: all pain astonishingly gone after 6-7 days... but always progressively came back after refeed, even while being careful, grrrrrrr...);
- quitting porn and temporarily masturbation (gosh it was the hardest thing I ever made, but I suspended masturbation for a whole year, and totally and definitively quit porn: after a few weeks of crisis, it made a HUGE, absolute and astonishing difference with EQ; just being with girls and touching her bodies now gives me almost everytime discharges of pleasure level 15-years-old-ultrasensitive-horny-teenager... and, if I'm not too anxious, the great erection that comes along with it (and when I'm anxious, which is still quite often, I just load up on cialis 2 days before ;-). Oh and last but not least, from the pain standpoint, limiting masturbation (I allow myself now just once or exceptionlly twice a week) and, unfortunately, limiting sex, absolutely is a factor of bettering).



To sum up bros --> keep in mind that this is a singular experience from a singular inividual; if you're new to our community, first and foremost read and apply the PDS Survival Guide (pentox, ALCAR, cialis, traction/VED, cleaner diet, exercise, quit smoking, limit alcohol); if you want to push your experiments a little further, then do try one by one the things I listed here, and see what helps you, while keeping the most scientific-focused method you can :-) [/b]


Cheers,

G
- 35 yo, Peyronies Disease with chronic pain, general hourglassing with girth and length loss since 09/01/17.
- Pain almost cured with Hirudoid cream and diet/lifestyle changes (see my topics on this); deformity still here, but partly reduced with traction + VED.

Godisreal

Great work, man. And thanks for taking the time of documenting and reporting your success and failures. It's greatly appreciated.
Quitting porn and stopping masturbation is definitely crucial for penile health, and it's also ridiculously difficult, I've noticed. I still battle with this lol.
Did you have any curvature? Did anything of what you described solve curvature? Did you regain girth or did you just "limit"'it like you said?
Thanks man.
30 degree dorsal curve, immobility and heavy loss of girth.
My body seems to get very inflamed when I masturbate too often or eat unhealthy.
Using antioxidants, Pentox and hirudoid cream, as well as manual traction, heat and Cialis.

postrocker

Thank you so much for your time, man.

The Curcumax that you take is the Curcumax complex 10.000 mg?
And the VED is the Augusta Medical Vitality?

May I also ask if you are feeling pain for three years nonstop?
36yo
Congenital curvature plus injury during sex - dec.2019
Curve to the left increase plus pain ~35degrees - nov.2020
Pentox (400mgx3) + Cialis (2.5mg/day) + supplements - dec.2020
Traction - jan.2021 onwards (curve now ~22/25degrees)

hope794

26 yo from Italy.
Peyronie's since abt 2014
Abt 20-25° bend, w/ a moderate twist to the left
Erectile Dysfunction for 4 years and getting worse
From pornstar-like to moderately depressed - still fighting for a solution.

Gabriel

Hey guys :-) !

I'm sincerly glad if my experience and time can help some; thanks a lot for your encouragements!! I would have wanted to redact this post a little earlier, but it is time indeed, which I take with pleasure, but I had so big a bunch of work that lack of free time and inertia got me.

To answer your questions the best I can:
- The turmeric stuff is not so much about the Curcumax brand: it's about the concentration in curcumin (active substance of turmeric) inside the pills; so just buy the strongest organic ones you can find on Amazon, or the strongest liquid version you can find, and test them and see how much can your stomach handle (for me, it's around 3 a day, and I have a sensitive stomach). Besides, don't bother so much with the pectin they sometimes add: it does not seem to make such a difference, apart from the fact that personally it hurts my gut more.

- The VED is the Augusta Medical Soma Correct, with the 3 different tubes.

- I did have the beginning of a curvature to the left around 6 month in, which resolved in 3-4 months, probably thanks to traction and VED, maybe spontaneously (because the right side of my shaft began to shrunk also, maybe pulling back the tissues in the other direction). In any case, I strongly advise traction and VED ASAP for curvature, as in 3 years I scrolled across dozens and dozens of studies and anecdote showing results in that field.

- I lost and then regained length, clearly thanks to traction and VED. I lost and never regained girth, but I strongly think that VED helped and helps me limit this phenomenon.


PS: editing the post with IF/OMAD infos suggested by buddies in another thread :)


- 35 yo, Peyronies Disease with chronic pain, general hourglassing with girth and length loss since 09/01/17.
- Pain almost cured with Hirudoid cream and diet/lifestyle changes (see my topics on this); deformity still here, but partly reduced with traction + VED.

Shane43

So, I am glad you ended with "To sum up bros --> keep in mind that this is a singular experience from a singular inividual"

Thank you for that disclaimer.

But everyone also should keep in mind that you started and stopped many, many things during an overlapping period. There is absolutely no way to know what truly worked and what didn't without "controlling" this "experiment".

I say this as a cautionary note, not to criticize you. And I thank you for sharing your experience.
62YO, hourglass indent/hinging at base 30deg bend up 3cmx2cm hard plaque at dorsal base. No Erectile Dysfunction. 3 rounds Xiaflex decreased plaque/indent/hinge/bend. 1 year later, penis went from 7.5 to 5.5 in, but only 15 degree bend and no hinging.

Gabriel

Hey man,

You're absolutely right, and I constantly kept this parameter in mind: this is why I always, always, always try to modify only one variable at a time, and keep it modified for as long as possible in order to see the effect -or the absence thereof.

This why when I recommend someone to try something, I mean it with sufficient data on myself to be sure that it works at least for me (for instance, the curcumin and boswellia stuff); and conversely when I am not sufficiently sure (eg the personal ESWT machine).

Cheers,

G
- 35 yo, Peyronies Disease with chronic pain, general hourglassing with girth and length loss since 09/01/17.
- Pain almost cured with Hirudoid cream and diet/lifestyle changes (see my topics on this); deformity still here, but partly reduced with traction + VED.

Mr man

Am not going to contribute anything productive, abut that was a great post. helful. thenks,
New routine. Daily traction with restorex 30 mins. With 45 min UV heat treatment using a lamp. Gone from being 30 degree bend to 30 degree curve. Giving peptides a go. Totally new treatment.

Dressa


Godisreal

Same for me Dressa. Helps with erections, definitely.
Have you tried traction tho? Like, with consistency?
30 degree dorsal curve, immobility and heavy loss of girth.
My body seems to get very inflamed when I masturbate too often or eat unhealthy.
Using antioxidants, Pentox and hirudoid cream, as well as manual traction, heat and Cialis.


jj21

Thanks so much for this post!

Just one question - Hhow much has your condition improved?

I just started VED 2 x 15 min sessions per day and am finding it far mor effective than 1 session per day. Also using the 3 cylinders.

Have a restorex but havent started yet!

I'm hopeful after reading your post!

33 yrs old
Peyronies for 4 years now
Got better but then got worse
Mild erect curvature but major Loss of girth, dents and significant semi-erect curve
Moderate Erectile Dysfunction
Re-started VED, also using Restorex

Godisreal

Nice one, JJ. What kind of improvement are you seeing? Girth re-gain? And you're using a medical grade one, right?
Where does one turn to order a medical grade VED?
30 degree dorsal curve, immobility and heavy loss of girth.
My body seems to get very inflamed when I masturbate too often or eat unhealthy.
Using antioxidants, Pentox and hirudoid cream, as well as manual traction, heat and Cialis.

jj21

I am using a medical grade with 3 cylinders... Definitely seen some improvement in curvature and also some girth re-gain! Google the augusta 3 cylinder or somaerect i think those are the ones recommended. I found a supplier in Australia where I am, im sure you could find one there or have it shipped internationally. The ParcL service (do a forum search on here) is also an option.
33 yrs old
Peyronies for 4 years now
Got better but then got worse
Mild erect curvature but major Loss of girth, dents and significant semi-erect curve
Moderate Erectile Dysfunction
Re-started VED, also using Restorex

Gabriel

Hey guys!

You're welcome :).

JJ, the only improvement I saw reguarding the deformity is some length coming back as I stated. Girth has not come back, but I feel VED is contributing to limit the loss rate.

One caveat though: I've been recently re-testing the VED variable reguarding the pain, and I seem to be finding that going from 1 VED session a day to 2 sessions a week reduces the pain I get when I come erect. Obviously not advocating against VED here, but, contrarily to what I have been thinking for 3 years, it may be worth check your VED habits if you experience long-lasting chronic pain.

As far as I'm concerned, I'm really thinking about saving money to buy a RestoreX in order to mitigate the upward curvature and maybe regain elasticity without overusing the VED. Do you guys know how could it work via Parcel?
- 35 yo, Peyronies Disease with chronic pain, general hourglassing with girth and length loss since 09/01/17.
- Pain almost cured with Hirudoid cream and diet/lifestyle changes (see my topics on this); deformity still here, but partly reduced with traction + VED.

jj21

Gabriel - Its reassuring to know you have made some improvements.

I recently saved up for a restoreX too for the same reasons. Have read some great reviews on here about it.
33 yrs old
Peyronies for 4 years now
Got better but then got worse
Mild erect curvature but major Loss of girth, dents and significant semi-erect curve
Moderate Erectile Dysfunction
Re-started VED, also using Restorex

Gabriel

- 35 yo, Peyronies Disease with chronic pain, general hourglassing with girth and length loss since 09/01/17.
- Pain almost cured with Hirudoid cream and diet/lifestyle changes (see my topics on this); deformity still here, but partly reduced with traction + VED.

orriw

This is  a great post, well done, also very enjoyable to read with the big  headings, subpoints.
But you havent  mentioned which of the treatment helped u with with aspect. Hiriduoid cream stopped ur pain temporarly if i am correct?
But could you correct or improve your curvature with any mentioned treatment, and do you still see some progress?
26y, injured at 21 :/

Reinjured late 2019 when having sex with weak errection.
No curvature, but rotation of the base to the left about 30degrees
Main problem: chronic flaccid pain.

Trying different stuff now

Lostandsad

How early on in the acute phase did you try the oral supplements like coq10, and the drug pentox?
MIA - nothing works after 5 months
supplements and pharmaceuticals I've tried:
cialis, pentox, magnesium chloride, dim, turmeric, hyaluronic acid, vitamin k2, paba, l-arginine, l-citrulline. either get surgery (and possible Erectile Dysfunction), get implant, or pray

Gabriel

Hey guys,

Sorry for the late answer: as I just stated on another thread about Hirudoid, I'll be back more steadily in a few weeks.

For now, I just posted a quick update on the Hirudoid general thread!

@Lostandsad: I tried all these almost right away, ie like 2 to 3 months in the acute phase, and took them for months... with absolutely zero outcome!!

Talk to you soon boys,

G
- 35 yo, Peyronies Disease with chronic pain, general hourglassing with girth and length loss since 09/01/17.
- Pain almost cured with Hirudoid cream and diet/lifestyle changes (see my topics on this); deformity still here, but partly reduced with traction + VED.

Lostandsad

Thanks for taking the time to hop back on and respond, very much appreciated. I started pentox and cialis 3 weeks into the acute phase, and so far it hasn't helped much at all(maybe it would've got worse but I'll never know). I'll finish the bottle and see how it goes
MIA - nothing works after 5 months
supplements and pharmaceuticals I've tried:
cialis, pentox, magnesium chloride, dim, turmeric, hyaluronic acid, vitamin k2, paba, l-arginine, l-citrulline. either get surgery (and possible Erectile Dysfunction), get implant, or pray

DarthPronius

Age 37. First symptoms Jan 2019. Small (4mm) calcified plaque near head, and narrowing near plaque, last 1/3 of shaft. Used pentox for 1 year. Still using tadalafil 5mg, coq10. VED & mild traction helping w/ erection quality

Gabriel

Hail my brothers!

I hope everyone is doing as well as possible, as for the old bros and for the new bros.

As I said responding to a few posts and a lot of DM, I've stayed away from this beloved forum in order to focus on work and family; but I am and will periodically be back for a few days, in order to update on my progress or on my new discoveries, and in order to answer anyone I can give help to :).

For now, I wanted to update my initial post here in a very minute way, but for some reason and despite my efforts I can't find the "edit" button anymore XD.

So, without repeating everything, I wanted to stress two main aspects here, as I am now almost pain-free, with a stable deformity that almost didn't move in 2 years, and have my normal life almost 100% back:

1) Hirudoid forte cream/gel has been and still is a game changer for me, being the only exogenous treatment that cured the flaccid and more so erect pain that haunted my life for 4 years. See our latest updates on the subject here: https://www.peyroniesforum.net/index.php/topic,14942.msg154825.html#msg154825.

2) From a more endogenous standpoint, I managed to almost 100% cure my chronic pain, and maybe to stabilize my deformity, by switching from a nutrient-obsession diet / hyperactive overexercising lifestyle to a calorie-balance diet / more restful lifestyle. This process, still occurring, is changing everything for me; see my complete post about that here: https://www.peyroniesforum.net/index.php/topic,18232.0.html


I hope that will help folks; take care :-)!!

G
- 35 yo, Peyronies Disease with chronic pain, general hourglassing with girth and length loss since 09/01/17.
- Pain almost cured with Hirudoid cream and diet/lifestyle changes (see my topics on this); deformity still here, but partly reduced with traction + VED.

orriw

hello gabrie, welcoe back! l i am really still wondering how the hirudoid did such wonders for you. Its interesting to think what condition you may have (apparently many here each have their own individual situation, remember Peyronies Disease is rather a symptom than a diagnosis) and how the Hirudoid worked so great. A lot of people here (including me) tried it. Unfortunately it did not have any benefits for me. More, it usually increased the pain, but i think this is because of the touching when applying the cream (pain area very sensitive for me). How about your pain area, is or was this any sensitive to touch?
26y, injured at 21 :/

Reinjured late 2019 when having sex with weak errection.
No curvature, but rotation of the base to the left about 30degrees
Main problem: chronic flaccid pain.

Trying different stuff now

Gabriel

Hey Orriw :-) !!

Yes, after a few years hanging around now, I totally agree with the fact that some folks seem to have found "the" thing that allieviated their condition, but that would not do crap for other friends. This is somewhat unfortunate, but it is also a powerful reminder for each and everyone of us to never stop searching, trying, experimenting, hoping and pushing further. For me, I was really desperate when I found the Hirudoid, and I really tried it without any expectation, as I had already tried rubbing dozens of substances on my penis for 3 years...

In any case, yes, it is absolutely possible that touching the plaque area or the penis itself cause a flare up in pain. This was my case for a long time, although the phenomenon was clearly not the same if 1) I myself gently rubbed my penis with a friendly substance (castor oil, aloe vera, etc.), which did not cause any pain (and, in the case of Hirudoid, even made pain disappear), or if 2) A careless, bumpkin, neglectful uro tried to find the plaque and diagnose me crushing my penis with his hands and telling me not to be a sissy about it (true story : this could usually cause me a 2 to 3 days flare-up afterwards) !
- 35 yo, Peyronies Disease with chronic pain, general hourglassing with girth and length loss since 09/01/17.
- Pain almost cured with Hirudoid cream and diet/lifestyle changes (see my topics on this); deformity still here, but partly reduced with traction + VED.