2 years of the disease that ended my life

[YoungPatient]

On September 2018, 28 years of age I got the onset of peyronies with a sharp pain after masturbation.
I tried everything that was in my power to do, followed every advice provided by the well intetioned people in this forum (Pentox 1200mg/day, 400 to 800 IU Vitamin E, colchicine, Peyronimev, cialis, iontophoresis, traction) and still the disease devoured my penis. I went even as far as paying 2 checkups with a renowned urologists, 240 Euro each, just to hear "There is nothing you can do, live with it". Being a student at the time, this ment spending up to the last penny I had. The other urologists covered by the Italian system treated me like crap, at least the expensive one spoke to me like a human and not like a king to an untouchable.

I have been living for 2 years with creepling depression, anxiety, self loath, panic from sex related topics and tachicardia (I have always been very active and always measured my heart rate. Before the disease it was constant between 55-60 bpm, but since the very first day i got the news from the doppler it peaked to 80 bpm constant and never came down, on bad days it goes over 100 even sitting down. One of the reasons i cant sleep is because I hear the F~@My girlfriend left me, my friends don't speak to me anymore and my family relations are dead. I just turned 30, and got in total 3 messages on facebook wall, 5 whatsapp messages and 2 calls. Great milestone. My worklife is crap, I'm earning what I was making 4 years ago, just because I wanted to pursue my dream job in Italy.... long story short, this country is dead economically and alhough I was better off in a "shithole" 3rd world country now I have creepling debt and can't turn back.
For 2 years there hasn't been a day I didn't wish for death in my sleep, and although being multiple times close to suicide, it turns out I don't have the balls to do it. My life ended, but I still have to endure it who knows for how long.

I tried attaching pictures from the onset until one month ago (nov 2018 - Apr 2020) but the browser dies when posting.

Change was fast and ectremely painful. I've been living on top of the cocktail mentioned above for peyronies, on antidepressants, sleeping pills, benzodiazepines etc.

Today my penis is completely covered in scars and hard plaque. I can feel a thick cord about 8mm wide that runs from the glans until the base and into my body (imagine a T section, separating the 2 corpora cavernosa and covering the dorsal part). My erections are very weak and when I orgasm it hurts for several hours (I try to masturbate as little as possible with tons of lube and a lot of care, but the penis is just broken). No sex since my girl left me, and no possibility of it soon, I am a pathetic piece of crap, anxious, pessimistic, nervous, insecure and females can tell from miles.

I went from the peak having great physique, a nice penis (It was my favorite part of my body by far), good social life with hot girls wanting to go to bed with me, to the pit that just goes deeper and deeper everyday.

I just want this life to end, I give up

[YoungPatient]

This is when the onset happened

[samsung]

I'm in the same boat as you, except I am fatter and older. And your dick is bigger and in better shape than mine. You need to get in shape between your ears. I don't know how so I can't tell you how.

[YoungPatient]

Thanks man, I'm sorry to hear you've got the same problem. So far I could only upload the "before" picture, so you see a healthy penis. I've been trying for more than half an hour to upload the actual status but there when I attach nothing happens, either my browser or the forum is having problems. I'll try again tomorrow.

[samsung]

PM me about benzodiazepines if you want. That is probably a journey you are not prepared for. That is what is causing most of your anxiety and your depression. They are a deadly poison. Read about tachyphylaxis. Read about PAWS. I'm sorry you're going through this.

[hope794]

(Now i'm gonna write in italian to help him, if you want to know what i said use translate )

Ciao Young, grazie per aver condiviso la tua storia. Ti capisco, sono nella tua stessa situazione (26 anni) e questo schifo mi è venuto a 20 anni. Ovviamente, così come è successo a te, ha completamente distrutto la mia vita. Se hai voglia di parlare, scrivimi sui messaggi privati. Non sei solo. A presto.

[YoungPatient]

PM me about benzodiazepines if you want. That is probably a journey you are not prepared for. That is what is causing most of your anxiety and your depression. They are a deadly poison. Read about tachyphylaxis. Read about PAWS. I'm sorry you're going through this.

I'm limiting them to an absolute minimum and taking quetiapine and pregabaline instead. Still can't sleep without chemical aid, the days I try I just end up crawling in bed with anxiety all night, not the most pleasant thing.

[YoungPatient]

I can't seem to post any pictures, neither with the insert image (only thing that happens is the message img /img appears) nor the Attach tool, which does absolutely nothing... does anybody know what may be happening? yesterday after many tries I could load the "before"condition.

by the way between new topics and my own replies I have around 10posts, so that should be enough?

Many thanks

[samsung]

Pregabalin is still GABA-ERGIC. Might as well take benzos. There is a long list of GABA-ERGIC drugs. Herbs too. Valerian, etc. Over time any benzo is going to cause more anxiety. Sounds counterintuitive I realize. But the more you take the more anxious you will get. Read about kindling effect. Just trying to help you. Trust me, you do not want what happened to me and member js1991 to happen to you. Any don't trust your doc. Doctors know nothing about benzodiazepines or any z drugs (zolpidem, etc.).  

[projectpd]

Hi YP, what's peyronimev? can you tell if you're in a acute or chronic phase? what did you do for iontophoresis?
your penis shaft in the pic looks practically normal.  

[projectpd]

sorry so that was the before pic , no wonder!

[YoungPatient]

Hi YP, what's peyronimev? can you tell if you're in a acute or chronic phase? what did you do for iontophoresis?
your penis shaft in the pic looks practically normal.

Hi,
Peyronimev is an Italian medicine developed specifically for Peyronies that an urologist here (Italy) prescribed along with pentox. There's an study showing it's efficacy but to be honest I think is just another snake oil. 2 urologists took a look at the compounds at my home country and both agreed are just harmless substances but with little promising effects, like a very small % of avocado and vitamin E (i mean reeeeally small). I took it for 3 months without any benefits.
The iontophoresis sessions where provided by an urologists here in Italy during the first stage of the acute phase. My acute phase was very aggressive with incredible pain all the time and deformity at very high rates, everyday I woke up I would see some morbid new changes, so it's hard to say if it actually helped or not, maybe it slowed it a bit down, maybe it did nothing, I honestly believe the condition was unstoppable in my case, I could literally feel the changes going on 24/7.
I'm at the late stages of the acute phase since deformity has slowed down, however a couple weeks ago a new pain spot developed again in a new place and now a void it's starting to appear there, so yes I'm f'~c<+d, what was left healthy is now being eaten away.

[LuisFernandez]

Hey I think the issue with the pictures is that the resolution is too high. Try resizing them and making them smaller so that you are able to upload them.

[Pixie1002]

Sorry to hear you're struggling so bad.  

I've had this disease for around 4 years.  After 2 operations I have lost around 2 inches and am in constant discomfort following circumcision accompanied by extreme turtling.  

I have good days, not so good days and bloody awful days.

However, I have a supportive wife and 2 wonderful kids.  But even so, sometimes feel as though getting Covid-19 might not be such a bad thing.  I hate bringing my wife down with my bad moods.  But at the moment I carry on for the sake of the kids.

I've also suffered anxiety due to health issues from the age of 21.  I've overcome things in the past and can only hope time will gradually help me accept the current obstacle.

[YoungPatient]

Sorry to hear you're struggling so bad.  

I've had this disease for around 4 years.  After 2 operations I have lost around 2 inches and am in constant discomfort following circumcision accompanied by extreme turtling.  

I have good days, not so good days and bloody awful days.

However, I have a supportive wife and 2 wonderful kids.  But even so, sometimes feel as though getting Covid-19 might not be such a bad thing.  I hate bringing my wife down with my bad moods.  But at the moment I carry on for the sake of the kids.

I've also suffered anxiety due to health issues from the age of 21.  I've overcome things in the past and can only hope time will gradually help me accept the current obstacle.

I'm glad you have a supporting wife. One of the worst parts of this nightmare is thinking how to find a woman. My life ended 2 years ago, I'm just waiting to die now

[samsung]

This bears repeating. My misery is based upon what I THINK about MY PENIS. "Finding a woman" has absolutely zero to do with a penis. Women do not care if you even have a penis. Well, some do, but they are worthless. Once your head is right (and mine is admittedly very not right because I think exactly like you do, except a lot worse) then peyronie's will not matter.

Nobody believes me, but women absolutely do not give a crap about your dick. And who cares if they do? I've never been able to explain this without sounding like a maniac. But there you have it.

[hope794]

YoungPatient, i've offered my help, but you refused it. TBH, i don't know why.

If i were you, i would go to a doctor and try all the known therapies, even the anecdotal ones which u can read about here (with caution!).
If nothing works, go for an implant.

That's basically my plan.

[YoungPatient]

YoungPatient, i've offered my help, but you refused it. TBH, i don't know why.

If i were you, i would go to a doctor and try all the known therapies, even the anecdotal ones which u can read about here (with caution!).
If nothing works, go for an implant.

That's basically my plan.

I'm sorry I didn't reply to your message earlier.
I'm frustrated because I've tried everything that has been offered to me. Still today I use the stupid penis extender as much as I can so when everyone Is outside enjoying the sun, I'm inside my room hoping this thing works... but things just get worse.
One of my biggest problems is that I cant go to a doctor and that is because the idiot's at the public offices in Italy have been delaying for months my permit, and without permit I cant have a doctor here ( medico di base). O nave a working contract with a big firm, I pay alm my taxes, I have an Italian MSc and still those miserable sons of a bitch have denied my health insurance since October last year, and things are looking that I'm not having no permit until nov-dec this year, that means on one side no insurance and on the other  that I have to remain inside Italian borders so no going to my home country for me. I know it is not your fault at all but the Italian government has been incredibly inefficient and degrading everytime I have done any kind of paper work. In 3 years I have been more time waiting for processes than with the actual permit in my hands.

For now I'll continue with traction, pentox,  vitamin e and my psychiatric drugs but this situation  has become unmanageable. I'm trying, trust me but this is proving to be bigger than me

[projectpd]

thanks YoungP, I found it:

Peironimev-Plus® in the Treatment of Chronic Inflammation of Tunica Albuginea (Peyronie's Disease). Results of a Controlled Study | Bentham Science.

the lead Gianni Paulis also is an author on these similar ones:

https://onlinelibrary.wiley.com/doi/full/10.1111/j.2047-2927.2012.00007.x  (full text) Efficacy of vitamin E in the conservative treatment of Peyronie's disease: Legend or reality?. A controlled study of 70 cases

https://www.researchgate.net/publication/51676614_Effectiveness_of_antioxidants_propolis_blueberry_vitamin_E_associated_with_verapamil_in_the_medical_management_of_Peyronie's_disease_A_study_of_151_cases (full text)

Long-Term Multimodal Therapy (Verapamil Associated with Propolis, Blueberry, Vitamin E and Local Diclofenac) on Patients with Peyronie's Disease (Chronic Inflammation of the Tunica Albuginea). Results of a Controlled Study | Bentham Science

Peironimed Plus has the actual ingredients that Gianni used in his earlier studies- propolis, blueberry, vitamin E.

although check out this:
https://www.topfarmacia.it/ferro-ed-altri-minerali/6552-peironimev-plus-30-compresse.html
"Ingredients: no active ingredients"

but it does say it has ingredients propolis; blueberry; vitamin E.
those were precisely substances Gianni used in all his studies.
so I don't know if there might be some conflict of interest with this product.

it doesn't say what amounts of any of the other ingredients, or what type of vitamin E. The avocado could be just a filler.  "vitamin E" if its not stated otherwise is often the worst type, ie. synthetic dl-alpha tocopherol, which was the only type that used to be available and also the cheapest. Check out Dr Barrie Tan's research/position on vit E
If there's some truth in these studies I'm guessing it's probably better to source the best quality vit E instead and known quantities and qualities of the propolis, blueberry, damiana and muira puama.

in the 2nd one above he says " the improvement of curvature occurred in 96.6% of the cases " out of a a study of only 70 persons. that's funny, even a schoolboy knows they can't have 3 significant figures therefore, and 67 nor 68 out of 70 don't come to that percentage.

I havent tried it yet but a form of iontopheris is easy to do at home, it's just direct current eg. from a battery with optionally a current regulator (cost about £10) and works with drugs that have polarity. It's puzzling as some of the studies used the "wrong" polarity for the molecule and still got results.

[hope794]

Im getting "cured" from Gianni Paulis with the protocol that projectpd mentioned above.

2 years, zero results. Under zero, to be honest, since i've lost 1.5 cm and my Erectile Dysfunction got worse. I'm not saying it's because of the cure, im just saying that maybe they were not enough to prevent the progression of the disease.


EDIT: Theorically, my plaque is narrowing, as the ultrasound says. But just worsening phisically. Don't know how's that even possible.

[YoungPatient]

Hope I'm in kind of the same boat as you, although I tried a traction device that I feel is the only thing that actually helped. The problem is that it needs a lot of time during the day so you end up in home (I feel I'm wasting my life because you cant go anywhere with that thing on, its risky, you have to be able to take it off quickly in case your dick gets numb). My dick is much slimmer now and shorter, but its straight enough... I think I could have sex without many issues there ( my main issue I think would be erectile dysfunction and pain when orgasming), but the curve is manageable, and I would give that to the stretcher.

I'm trying 2 last options that you may also try, they seem risk free and dont require huge investments or change.
First I'm going keto. Neo says in his videos it helped him a lot, as well as other members of this community. I'm doing it in parallel with intermittent fasting.  I have a friend that has been in this regime for 3+ years, and although he doesn't have peyronies he tells me it made a great change in his life, so I think it's worth a try... if not for peyronies for other aspects. Also if you dont like it you can always go back.
Secondly y like hyperthermia but heating the rice sock every time was a pain in the ass, specially because I live with other people and they are starting to get suspicious of me going to the microwave a couple times a day and then disappearing in my room.... as you know here in Italy the microwave is not commonly used so I'm the only one that runs it.... so the solution I started trying this week is actually something somebody else proposed, I dont remember where I read it but I think is a great idea ( not mine though). It consorts of using hamdwarmers (scaldamani) . You have to be careful not to burn your penis!! I use 2 socks and that is the best so far. It provides a lot of hours of heat and nobody has to know you are using it.

I'll let everyone know how this things go. At this point I am not optimistic with anything, but with things like this it's worth taking a shot.

[TonySa]

Maybe add 2.5 -5mg nightly cialis.  It should immediately help w ED and overtime help remodel plaque to healthy tissue.  A win-win!

[melting]

That sounds mostly like "scratching the surface". Incl what the guy has in his "cure". That's a drop of water on a hot stone. Vit E is good but just 1 supplement of many that can help.
Use all you can use that can help and has good effects.

Btw. you should be in the sun nontheless and use traction other time. Some heat is ok but doesn't do much if its not combined with other measures.

Most important part of dealing with peyronies is being healthy. diet can help but is only 1 part. Stressed and depressed will mess with erections even with no injuries. No sun, No Vitamin D3, is bad and increases inflamation.
Threatening to end your life, the body doesn't like either btw., guarenteed stress hormones and then depression and inflammation and so on. Hard if not impossible to solve Peyronies Disease this way..

The way you describe most probably your pelvic floor is also tense and messed up, you can train/relax it.

Today my penis is completely covered in scars and hard plaque. I can feel a thick cord about 8mm wide that runs from the glans until the base and into my body (imagine a T section, separating the 2 corpora cavernosa and covering the dorsal part).

That sounds like the septum, a natural part of the penis, a hard "cord" everyone has. But of course that area could be inflammed or damaged too..

You need to make doppler image at the doc to see what type of plaques you have. Al

[jj21]

I'm sorry about your condition please try to stay positive. As hard as it is (pun not intended) there is a light at the end of every tunnel.

Worst case you can opt for surgery OR an implant which could solve your problems and allow you to resume a normal sex life again.

Also have a look into VED therapy, many members here who had the disease for years with significant curvature were able to find improvement with the VED protocol in this forum.

Also have a look into RestoreX - it's the one traction device that doesn't require hours of usage. 1 hour a day is all thats required I think and it's backed up by studies.

Definitely recommend adding cialis daily 5mg to your supplements. With the combination of pentox and cialis daily I was able to have a regular erections again.

Stay positive, there are women out there who will accept your condition and you will find that for many of us, peyronies made us better, more sensitive people. Some of us even come out with dicks stronger, thicker and longer than pre-peyronies!

Dont give up!

J

[YoungPatient]

That sounds like the septum, a natural part of the penis, a hard "cord" everyone has. But of course that area could be inflammed or damaged too..

You need to make doppler image at the doc to see what type of plaques you have. Al

Hi Melting,
As far as I can remember the middle section where the septum lies had always been soft, and then progressively started to harden more and more until it covered the full length, maybe my mind is playing tricks on me?
I mean, if you pinch with your fingers from the sides, do you feel a thick structure in the middle all along the penis? It would be a great relief to know peyronies didn't mess up my whole septum, but that it is that way.

Regarding Doppler and other medical stuff I am in a very difficult position since the Italian offices have completely messed up my papers and won't give me a medic (yes I have done everything legally but I happened to find some idiots that can't differentiate their butts from their heads and have been delaying my process for more than half a year).

I appreciate if anybody can tell me how their septum feels like.

YP.

[melting]

I mean, if you pinch with your fingers from the sides, do you feel a thick structure in the middle all along the penis? It would be a great relief to know peyronies didn't mess up my whole septum, but that it is that way.

Of course. It's harder tissue than the topside or corpus spongiosum tunica layers.
Still could be calcified or scarred..

That structure expands in length but can't expand in girth, cause it is right in the middle. And it doesn't need to.
Also, try to find out if you have the condition "hard flaccid" which might include similar symptoms.

[TonySa]

How is minimizing other's situation helpful to them or even you Peter?