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Author Topic: Honestly confused about the lack of treatments  (Read 547 times)

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Hontas

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Honestly confused about the lack of treatments
« on: September 14, 2019, 03:22:08 PM »

I and many others still complain and write consistently on how we have constant progression for years. I had small improvements with Potaba, Colchicine and mainly topical glucorticoids however the latter being really poisonous (due to making you type 2 diabetes within just weeks) i am utterly out of words for the lack of treatments. I went to 8 doctors with no diagnosis at all saying to me that it was an old man's disease, which i get, but without any treatment its worsening so much that its impossible for me to keep going on about this at the same pace. There needs to be something that is a permenant cure and reversal and i don't accept otherwise. I plan to cease every activity i do normally to find a cure because this is unbelievable. I get prescribed a cream that almost surely gives squamous cell carcinoma and the dermatologist was so relaxed while prescribing it. I get told that surgery is the best way while that just sounds more nuts to me as time goes on. Surgery will only make everything worse over time, unless you are having a one-time peyronies or are planning to go for implant(which to me looks much safer than grafting or pliacation).

This is unacceptable, every doctor i go to listens me while that should be in reverse. No one doctor actually told me that i was wrong, i just see utter disappoinment in the medical system and lack of information in their eyes. I didn't want to unrespectfully say that i know a lot compared to them and i never did such a thing. I always asked for their information about this but all i took as an answer was that they think my reasoning is right and that they know nothing about it in addition to what i say. This is a disaster. This is worse than the current treatments that are done for cancer. This needs to be repeatedly shoved into the faces of andrology and rheumatologists, which work on such miniscule and unimportant issues while undeservingly leaving this disease out in the cold.

But you know what? Even if it takes me another degree in medicine to solve this disease i will do it. I have been against almost 15 doctors since now and everytime i was against them i was right. Some doctors really helped me as they were really good in their fields, some were disrespectful and dismissive but really few doctors helped me and i am grateful for that. However this disease is surely being dismissed. This is worse than any other "life quality decreasing" disease known to mankind and there are no research or actual scientific thought went into it, unlike cancer.

https://www.smr.jsexmed.org/article/S2050-0521(19)30011-3/fulltext

This article was the only one i found from the last year that was actually relevant to the issue. The others are still whining about surgeries and etc. What good does a surgery do to me? What good does it do to apparently %16 percentage of peyronies patients that is younger than their 40s? Almost all of us can't get out of this active phase and i suggest not finding a cure and not researching at all in this area is suggestive of malignity in my eyes. It is well known now that even some teenagers suffer from this disease and governments and the whole world are just watching. I still argue that Biologics are the only way to treat the disease. This is actual shame to ethics of the whole medical community that such minor issues in health are getting cured with biologics but none was made specifically for peyronies. No, i won't give up nor i will suicide man. And if grown men in their 50s honestly takes joy from potentially damaging a young men's life, you don't expect the society to thrive. They literally don't even investigate the issue EVEN THOUGH they will earn money. Even though it will bring them millions they(the wealthy) are so butthurt that honestly i believe they are dumping successful trials about drugs as it is impossible for nothing to be working.

Best example:

https://www.ncbi.nlm.nih.gov/pubmed/27473823

No actual clinical trials will be done for this actual life changing drug. I bet none.

I saw with my own eyes where they tried to manipulate carcinogenity of a drug(Tacrolimus, Pimecrolimus) and try to dump old articles about how PABA was dangerous to human health. I don't care anymore.

I will go anywhere to cure myself. I won't suicide, as well. We WON'T. If anyone is reading this out there or following this forum out of their malicious reasons(there are many fake one off accounts of doctors), i hope the worst on you and you think you are so smart but there is always someone smarter than you people out there and you are underestimating the power of minority when they gather up.

Friends, we have to put the issue on their faces, we have to show them that they are not invulnerable. WE have to show them the human side and psychological aspect of this crap disease as it can also happen to you! Your father, your lover, your children. Its easy to leave people behind but what happens if it happens to you? That is the question. WE need more activism. We live in the age of privacy and deep web, its not that hard to hide your identity while raising awareness. Nobody can do you, or me any harm. I don't have any concrete way of starting awareness but i know for sure we HAVE TO.

There is nothing to be ashamed of, we have dicks, you have a dick. Every man have a dick. It doesn't make any of us any less of a man if we get to cure ourselves and have good sex lives. It makes us
less of a man if we shut up and act like this is not a medical condition that needs to be cured. This is no less of a condition than cancer and should be acted on as such. Bill Clinton has(or had) a bent dick they say, and i don't see anyone calling him less of a man since he was the most powerful man in the world not long ago. I am saying all these because i have been there and there are many men in this forum that are still there. We need to take action and improve the quality of our lives, brothers. Don't leave todays work for tomorrow. We may be the weirdest bunch out on internet with a common problem but we have a common problem and we need to solve it immediately.

Other than that, i will speed my studies further. If anyone of you want to support me and some other people that i talk to in forum , to get a group of doctors to start research, message me.
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Hawk

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Re: Honestly confused about the lack of treatments
« Reply #1 on: September 17, 2019, 09:18:14 AM »

Hontas, your posts show a pattern seen with a few others in the past.  They are now gone from the forum.  You go to many doctors, end up concluding you know more than all of them.  Such statements sound like mental illness, not serious posts.  You claim to have found the treatment everyone else missed.  Then you say some of the doctors helped you but you are not currently going to them.  Your miracle discoveries apparently are not much good because you are still here talking about your issues.  It all becomes a muddled mass of posts that confuse the topics.  When directly addressed you often get hostile.

These posts do nothing to help you or the forum and posting such non-sense in the advocacy board does nothing to promote or encourage any interest from professionals to take our group seriously. It is best if you read more and post less and stick to the subject of each topic.

Hawk
PS: This post does not require a response!
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Hawk - Updated 10/27/18 - Peyronies Society Forums

hope794

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Re: Honestly confused about the lack of treatments
« Reply #2 on: September 18, 2019, 06:33:41 PM »

I appreciate your attitude, Hontas. Never surrender. Only we, the young men, can understand the real horrible part of this disease.
It's crap to get it at 50+, but it's a real HELL to get it when you're <30 years old.

Kind regards
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24 yo from Italy.Peyronie's probably since 2014.Since then,penis bends of about 10-15°, with a slight twist to the left.Moderate Erectile Dysfunction since 2 years and things getting worse.From pornstar-like to moderately depressed,but still fighting for a solution.

Hontas

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Re: Honestly confused about the lack of treatments
« Reply #3 on: September 23, 2019, 12:22:03 AM »

hope794,

 I know you and Werther and a few others are thinking the exact same way as me, maybe we should get together and go start something in another country other than the ... USA. I believe we have numbers, its just that some people are really insecure and feel shame about this but i couldn't give two f*cks about it right now. We need to go and start a research on a country that has decency such as Japan, Korea or maybe another place from the east. Even Europe maybe. Somewhere where they don't actively suppress penis related research because its a penis and somehow eyelashes are more important. We have to act on this, best plan would be to maybe start non-invasive regenerative therapies. Reconstructive surgery or tunica transplant would also be nice. But at this point, i believe an actual therapy into the plaque that helps it dissolve and improve as well as better grafting procedures that don't cause nerve damage nor size loss would be the first subject to research about. I am really determined on this, we just need numbers.
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Hontas

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Re: Honestly confused about the lack of treatments
« Reply #4 on: October 17, 2019, 08:52:01 PM »

I wanted to add some stuff to this post. I genuinely think most doctors are insane in the head, i have had tons of encounters where i went to a rheumatologist/immunologist where i started talking about other symptoms in my body not to scare them off, then they are listening closely etc. Just as i start talking about my penis they go "BUT THATS NOT MY AREA NOT MY CONCERN GO TO UROLOGIST". I tell them that i went to one urologist, got diagnosed with Peyronies and was referred here to look for help, as i literally lose my will to live, and this doctor not only dismisses me in a rude way he F^@$!ng compares my disease to a F^@$!ng bone and back pain. I swear to god its just the most frustrating thing ever. Take one unstable person and that person could kill himself in a week going through this lmao. At least i am still mentally stable enough to treat myself with 4 different medicines that are not even once told by any of the doctors. I give 0 credit to any of the stupid doctors i have been to. They literally are not only are dumb enough to not see that a disease is never 0 and 1 and is actually a spectrum but their dismissiveness against this cancer-level fuckery of a disease is unrelentingly painful. I am trying to get tested for cytokines but they don't help none. I guess i will learn this disease and cure myself as usual. If only i could find one decent human being that happens to be a rheumatologist and reads the articles of Cadavid etc. to maybe help me.

Dumb ass doctor, its a connective tissue disease just like many others that you take a look into, stop acting like a c*nt and try to cure me, do your job as we pay you to do so. These people man...I am a bit angry these days, don't want to look into much of the forum and don't even want to research anymore. I just try to get bits from other disease research and cure myself using established drugs. Its not bad but still it could be much better if they actually TRIED to help. I am getting more into "dangerous" drugs category as time goes on and i have a few things in mind to still try...

I suggest you guys just not even going to some doctors and not waste your time beforehand if they are an a$$hole. Just skip them, go to doctors that are willing to help and are nice.

Anyways, i am going right back to my treatment that is apparently not effective at all.
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melting

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Re: Honestly confused about the lack of treatments
« Reply #5 on: October 25, 2019, 08:50:59 PM »

I like your take on it from the outset - Pro active trying to make something happen while not only focused on yourself.

You're right that most doctors that are in the system are not of much help. They can be used to get to certain treatments but most docs in the public health care system don't have the time to solve your problem individually(!), cause that's what's needed! TIME! That's where your enthusiasm to find a solution will be stopped again no matter what country you go to. You need someone really interested in it and/or someone dedicating their time cause they're paid for it.

The only solutions viable for most docs regarding peyronies are injections or an operation.(the next patient for a different problem is waiting!!!)

I didn't find a doc that would SOLVE peyronies and considering the EU medical system gave up cause I'm not rich to pay a doc beyond an hour. Operation and injections are to me, logically no option cause of their possibility to make things worse. Xiaflex I have no access to.

If you want to avoid invasive "1 time treatments" then there's already the solution on this forum:
-Transdermal applications to "bath" the plaque in to break it down chemically.
-Mechanical traction/expansion to pull/stretch the tissue/plaque.

Both need A LOT of DIY action and time investments and a high frequency of application that only you yourself can do. And there of course many will fail for various reasons.
There are no other logical ways to get to the plaque that are not invasive. Oral application can only be supplemental cause obviously and logically it can't reach the site of most plaques.
Transdermal should be a staple of any peyronies treament. Acute and hard phase.
Problem of course is the troubleshoot and most people are just not able to even mix a transdermal solution nor invest the time to do mechanical stretching. Most people want a 1 trick solution and are not ready to what it takes. I had so many contacts and questions of help through the years but only a handful were mentally able to do it. So depressing and I find myself quiet frustrated at it seeing so much despair while the solutions are already out there.
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Whyisthishappening

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Re: Honestly confused about the lack of treatments
« Reply #6 on: November 05, 2019, 12:36:31 PM »

try a penile MRI i had 3 so far my US also didn"t so anything
also try reishi mushroom powder it may help you
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Godisreal

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Re: Honestly confused about the lack of treatments
« Reply #7 on: November 26, 2019, 10:47:31 AM »

In what way does a mushroom powder help with Peyronies?
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Youngster with Peyronie’s and high erection angle, peyronies onset in September 2019.
Mild/Moderate dorsal curve, occurred overnight after re-injury. Flaccid narrowing. Hard flaccid. Flaccid pain/discomfort
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