Joke of a disease

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Hontas

I try extreme keto and take colchicine 1 mg , , 400 ui vitamin E, every , single, day. Nothing improves.

Bubba dawg

Looks like you are a candidate for Xiaflex or Surgery. You're taking too many drugs imo. Mixing all that can be dangerous. I took L Carotene and it was very hard for me to get an erection. Just the opposite of what it was supposed to do. You don't say anything about being under a  Peyrones Doctors care. Being in pain requires extreme measures. You're not likely to get that in a pill.
Ya this is a terrible disease. Has a bad effect on our mental well being. Good idea to get counseling while you are trying to fix this problem  
5 Rounds of Xiaflex. Good results.

I am known to give out false information and post nonsense with little to no evidence to back up my claims.
I have ignored several warnings. Further reports to the moderators or Administrators and I will be banned.

Hontas

Also what is even working against pain? How is the solution not in a pill, there are literally no treatments for pain

Stabler

I am wondering if you have looked through our list if specialists?
https://www.peyroniesforum.net/index.php/topic,4063.0.html

If the doctors you are seeing are saying there is nothing you can do, then you are not seeing the right doctors for Peyronies disease.

Stabler
Moderator since 2015- Missouri- I work in the medical field and have strong knowledge of insurance and how to obtain coverage for medication and other treatments. Being a woman I do not have Peyronies but you can ask me anything. I am happy to help.

Hontas


How can i tag certain people to notify them of this topic?  

Stabler

I have gone through your posts and it looks to me like you have only tried supplements and the colchicine to treat the Peyronies, You are against Xialfex because it is an injection you have not mentioned VED or Traction I see no mentioned Pentox, If this is accurate, there will be no remission or reduction of symptoms. You may need to travel outside of your area to find a good urologist, one that would recommend VED, Traction, Pentox etc... Also you should consider that just because you have been to "the best urologists" in your area doesn't mean they are the best to treat Peyronies.

Stabler
Moderator since 2015- Missouri- I work in the medical field and have strong knowledge of insurance and how to obtain coverage for medication and other treatments. Being a woman I do not have Peyronies but you can ask me anything. I am happy to help.

Hawk

Hontas, what country are you in?  As far as I am concerned Colchicine is crap.  It is for gout and the side-effects can be as bad as chemo if you are unlucky.  I took it for 2 months.  I consider it an out-dated obsolete drug for Peyronies Disease. If you do not have Pentox then you have not been to doctors on our list.  I got way more benefit from ALC than from Colchicine.  
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Hontas

Pentox was the first drug i tried, funnily enough it increased my pain by a significant amount.

Bubba dawg

When I get home I will look but I am pretty sure my doctor said 800  a day of vitamin E to prevent me from having another attack. I know it was at least 800 units. So 400 units wouldn't be enough to matter. That was too much for my metabolism.  May be ok for yours.
**Edit. Looked at my records. 800 units a day is what my doctor recommended
5 Rounds of Xiaflex. Good results.

I am known to give out false information and post nonsense with little to no evidence to back up my claims.
I have ignored several warnings. Further reports to the moderators or Administrators and I will be banned.

Bubba dawg

You can send them a private message
5 Rounds of Xiaflex. Good results.

I am known to give out false information and post nonsense with little to no evidence to back up my claims.
I have ignored several warnings. Further reports to the moderators or Administrators and I will be banned.

Hontas

I have sent 6 people that came in my mind a private message and i would really like if you guys also invite people who are really young -40 years old with a persistent and non stop active peyronies. I would really like to start a good discussion and try to find specific genetic markers maybe(dupuytren, diabetes, arthritis, etc..)

JS1991

If you're so desperate, look into fasting.
Do your homework before attempting a prolonged fast. JS1991 Timeline - Peyronies Society Forums (updated)

popopo

I feel like this topic is a bit unfair. I personally have been on and off in what could be described as the active phase. I still don't know what kind of penis I might end up with when I'm older. I'm 24 now and already have dents, lost a lot of girth and measure about an inch shorter than I once did. For me not thinking about it is the best thing to do cause otherwise I just get angry, frustrated and depressed.

Some of you people really act like there is a solution to this problem and if you can't find it you haven't looked hard enough, then they go on and on about VED, traction, injections, implants and pentox. All of which I PERSONALLY tried (except for xiaflex cause let's face it, it's  not very nice on the body) and for me personally these DO NOT work. VED has even hurt me in the past and so has traction. I would recommend everyone to stop obsessing about this as hard as it is, take care of your body in other ways and just hope for a brighter future.

The assumption that those that aren't healing just haven't tried everything is wrong and kinda annoys me. The truth is that there obviously isn't a simple cure or treatment plan for most (otherwise we would not be here) and it's up to the medical field, not us, to come up with a proper treatment or cure.

People might think that I "give up", but that's not the case. Just like you might think I'm lazy or pessimistic, I might think you guys are wasting your time. Think about that.
Age: 25
Date of onset: 17
Symptoms: sharp pains, numbness, change in shape/size, hourglassing and discolaration from jelqing/VED usage as a teen. Diagnosed with a venous leak and possible scarring.
Treatments tried: cialis, pentox and VED didnt help

popopo

And fasting? Come on now.. I've been on almost any imagineable fitness plan and the thougth that fasting will magically regrow your dick is just.. *facepalm* advice like this might make an already desperate guy desperate enough to become anorexic. Oh and for the record, steroids won't work either (they always made sense in my mind cause anything male is caused by testosterone) but having tried Testosterone on a nice dose as well, I can say that won't work either.
Age: 25
Date of onset: 17
Symptoms: sharp pains, numbness, change in shape/size, hourglassing and discolaration from jelqing/VED usage as a teen. Diagnosed with a venous leak and possible scarring.
Treatments tried: cialis, pentox and VED didnt help

Hontas

Honestly there is a medical reason why all this molecular dysfunction occurs and i am trying to narrow my searching field with the help of many others that are in the same boat as me. If I can narrow it enough i can do research on my own and get to the bottom of it.

Bubba dawg

Popolo, you didnt try the main thing that would improve your situation. Xiaflex injections focus where the problem is located. I experienced no long term side effects. I work a physical job the entire treatment time. My wife notices no difference during sex. I still need some help gettin in there. After I am in it, is back to normal. I will get more treatments in January to further improve things. I would no hold my breath waiting on a cure for this disease. Getting bye is the best option right now
5 Rounds of Xiaflex. Good results.

I am known to give out false information and post nonsense with little to no evidence to back up my claims.
I have ignored several warnings. Further reports to the moderators or Administrators and I will be banned.

JS1991

QuoteHonestly there is a medical reason why all this molecular dysfunction occurs and i am trying to narrow my searching field with the help of many others that are in the same boat as me. If I can narrow it enough i can do research on my own and get to the bottom of it.

Keep it up! I'm with you.

popopo, everyone deals with this in their own way, and I can understand how checking out of the situation can be the most beneficial for you. I personally have managed to mostly stop advancement of the disease and gain some small improvements, and I am literally in shock at the data fasting presents to me in terms of healing anything you can think of (including several anecdotal accounts of dramatic Peyronie's improvement), so I'm going to continue with my eternal optimism! I also feel as though you will see much better progress from VED and traction once you hit a stable chronic phase that does not turn back acute (whenever that may be). Best of luck to you.
Do your homework before attempting a prolonged fast. JS1991 Timeline - Peyronies Society Forums (updated)

Hawk

Hontas,

I can't invite people that fit a specific medical criteria or symptoms any easier than you can.  Post a topic that says "All members 30 years old or younger with a persistent and non-stop active peyronies"

Once they respond you have their names and you can discuss what you want on the forum or through PM.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums