Why do some active members suddenly dissapear?

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orriw

I read some very interesting posts from members, but some of them have not logged in for years. Of course this is just guessing, but why would you when talking so much with this forum, dissapear and never log in again? Some of them had stories or plans that i was interested in reading and see the outcome. Guess one would be they were suddenly cured and say f*** this forum  or perhaps some even did suicide? I am not sure why you would never ever get the thought in a calm minute to log in back to this forum and give a quick update to fellow Peyronies Disease patients.
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

YoungPrince

Good question, sometimes i also wonder where they possible be? They found something? They learnt to live with it? They decided to go on their own and not looking back here because they want theirself disconnect mentaliy from here where seemingly no cure? I also get depressed when i search through this forum again and again and i find nothing. So yeah, interesting question.
Age:27
Self induced peyron 2022.04.?
Fibrous ring on the base, restricting bloodflow
unable to sit because of it.
Lost 0.5 inch in girth.
The ring keeps tightening.
Penis often goes cold and slugish.
Narrowing, Right side does not fill properly.

Indenialguy

I actually messaged a guy a couple of weeks back who hadn't been active in months. He had similar problems to me and even said it was a long shot to message him but wanted to see how he was getting on.

To my shock he actually replied, he basically said his pain had dramatically improved and he was just trying to get on with his life.

I responded but didn't hear back again.

Just goes to show how many others must improve and just move on, or at least gradually accept it and live their lives, that should offer promise if nothing else.
32 yo UK
Engaged with two young children
Injured 2017, healed
RE injured Sept 2022
Chronic flaccid pain since 2nd injury
Starting 5mg cialis daily, trying to obtain pentox online

Possible hard flaccid, possible Peyronie's, possible nerve damage

IwillbeatPD

It makes sense if you think about it. If you were cured it would be nice to stick around to support everyone, but realistically, I'm sure most join for support and then once they're back to normal-pyronies is the last thing they want to hear or think about. It's hard to blame them really. The idea is that you either treat it, or choose a surgical option or implant for correction. I'd hope nobody on here is trying to just live with this for life. My uro told me 30% of people he sees improve on their own. Not sure how much truth there is to that but he specializes in pyronies.

I'm 2 months in and I'd say incredibly educated on my options due to countless hours of research and reading. I'll do everything conservative in my power to beat it, but if not I will probably go the implant route 1-2 years down the road. I'm certainly not letting this run my life and I hope none of you do either. As much as I love the support, I hope to see you all 100% healthy again and off this forum in the next couple years as a sign that you're going about your life.

36/Male/No underlying conditions: Symptoms began Sep 2022. Indentation mid-shaft right next to plaque. Mediocre erections with hinge effect. Taking Pentox 400mg 3x/day, Tadalafil 5mg daily, L-arginine, using heat, manual traction and VED.

Indenialguy


Great Post and I fully agree, 99% of people will find a cure somewhere along the line, even if it has to be the implant route.
32 yo UK
Engaged with two young children
Injured 2017, healed
RE injured Sept 2022
Chronic flaccid pain since 2nd injury
Starting 5mg cialis daily, trying to obtain pentox online

Possible hard flaccid, possible Peyronie's, possible nerve damage

LWillisjr

This is an interesting question that comes up from time to time. I know a couple of the "old timers" actually got ill and passed away. And Old Man (VED expert) has Dupuytrens so bad he can barely type now.

My belief is that many come here, learn what they can, and then move as was earlier posted. I was not even aware of Peyronies Disease when I first contracted it in 2007. Quickly found this site and have stayed with it ever since. I am also thankful for the Moderators we currently have as they also have chosen to stay around awhile to help and answer questions along with performing moderation duties here. I would be nice if more members would stay around and help once they found their answers here. But I also know it takes a lot of someone's time.

Thanks for you input.
Developed peyronies 2007 - 70 degree dorsal
Traction/MEDs/Injections/Surgery 2008
66y/o  14 years Peyronies free
[URL="[url="http://www.peyroniesforum.net/index.php/topic,895.0.html"]http://www.peyroniesforum.net/index.php/topic,895.0.html[/url]"]My History

Asphyxia

Just logged in after months of not being activate, and a period of only checking my messages, my reason is: this fear and dispair really messed me up,logging into the forum was getting depressing, and i was craving anything that could provide a temporary relief, and somehow almost never gave in, while doing nofap too,
i started to suspect its hard flaccid and not peyronies,  searched online for treatment, was hard to find a treatment when nobody understands the condition, saw on some forums people recommending anything that fixes tbr posture and sorrounding muscles or exercises that cause relaxation the pc muscles, so some of the recommendations included substanves,, so alcohol, weed, muscles relaxants, i later found out myself that sleeping pills lessen the pain for me, anyway, with all the negativity, nightmares and suicidal thoughts i dropped the exercises, stretches and w.e, currently doing drugs to the point my nose bleeds and liver frys,  stopped caring about using pills that might fix my penis for the sake of fixing my penis, they became recreational to me, an addiction i suppose i could say,
started drinking alot of coffee,  got my adhd prescription, on top of that.
And still taking whichever substance i can get.
When im not sober its because im sleeping through withdrawal.
Also messed around with supplements like minerals and i overused them and seemed to me like i was very close to death, yet only thing i could think about is that i didnt dispose of my medical papers about my dick.
So i dont even know if i care anymore or want to care bcuz everything i do is to escape the thoughts, even the withdrawl numbs me enough.
Logging into the site is far from being a priority at this point,
These thoughts i get when reading/trying to fix my injury and failing is one of the things im running away from at the end of the day, reached my limit.
I only want to either fix it or die frankly, and since im burned out i imagine if i do fix it il be doing that on various mixtures of drugs and buzzed out of my mind.
Oh ye, and nothing positive to contribute anymore, before any of that i was scrolling through posts, people were asking for supplements advice, i didnt bother answering anymore, cuz nothing seemed to work for me and many others here by my observation(atleast with supplements/unconventional treatments)
Kinda do wish there was a hardflaccid board here though, got lots of help as it is with that regard but i still dont understand whats going on or even what i have and exactly how to fix it and discord and other forums are confusing, i do see a point in logging in to help people in whichever way i can though, but it just doesnt happen.
Age:23. Onset of symptoms: september 2020.
Curve mostly semi erect about 60 degrees, slight pain
Tried short & prolonged fasts, keto,carnivore, traction and most of the supplements.
Severe digestive issues, probably an autoimmune disorder

IwillbeatPD

Asphyxia,

If it is taking that much of a toll on you mentally, why not just go get an implant and be done with it?
36/Male/No underlying conditions: Symptoms began Sep 2022. Indentation mid-shaft right next to plaque. Mediocre erections with hinge effect. Taking Pentox 400mg 3x/day, Tadalafil 5mg daily, L-arginine, using heat, manual traction and VED.

YoungPrince

Implant is not a solution, its a defeat at least in my view and even with it you still have a chance to get this thing again. We need to heal ourself, a full recorvery. Fixing our dick is the goal and not to trade it away.
Age:27
Self induced peyron 2022.04.?
Fibrous ring on the base, restricting bloodflow
unable to sit because of it.
Lost 0.5 inch in girth.
The ring keeps tightening.
Penis often goes cold and slugish.
Narrowing, Right side does not fill properly.

Asphyxia

As i mentioned, i dont know what i have since mri was clean(flaccid), so i dont even know what to treat, and even if i did, nothing seems to work i went extreme with everything ive tried but anyway, i dont know whats left for me to do here anymore
Its not really a forum that is meant for differential diagnosis.

I mean i did ask dr,trost the symptoms of somethibg that could resemble peyronies and what it could be and got an answer but there seem to be so many other conditions that im lost,
Age:23. Onset of symptoms: september 2020.
Curve mostly semi erect about 60 degrees, slight pain
Tried short & prolonged fasts, keto,carnivore, traction and most of the supplements.
Severe digestive issues, probably an autoimmune disorder

Kobegianna

Because after a certain point we realize it doesn't do much to keep coming on this site. If you are on here long enough you see that there is no cure for real Peyronie's besides implants. All the other treatment modalities like supplements tractions, VED , etc. honestly really don't do much and will never ever get you back to 100%. In all honestly supplements will do absolutely nothing to cure a bend or  hkurglassing. Possible help for pain? Who knows. VED in my opinion is snake oil. Probably cause more damage. Traction only for curvatures and even those people that find success seems anecdotal.

It's just the same information going around. You realize that after awhile. Lots of good information on implants and people you can talk to on here for that. But other then that if you aren't going the implant route, after you realize supplements, tractions and all the other things people suggest don't work and everyone just grasping at the tiniest bit of hope.
34 yrs Old, Healthy very active
Possibly injured penis or took too much Cialis
Symptoms starting January-February 2021
First dent seen April 4, 2021, painful erections

Mikel7

This website offers hope for a lot of individuals and some things work for some and not for others. Traction worked for me and restored almost all of my lost length of 1 1/2 inches - along with girth. The supplements I took possibly helped me in reducing inflammation. It also got me into eating better and developing a strong exercise regimen.  Heat therapy also worked for relieving my pain and accelerating healing. There isn't another website around that offers what is here. We also have 2 awesome Dr's that are here to answer questions for free! What other website offers that? It is sad that some members don't see the value of a website of this kind.
Lump April 2020, age 61 , Dr Levine 6-26-20,
Dorsal Curve 11-1-20 , Peyronies
Vit E400mg, COQ10, ALCAR, Heat Therapy, Penimaster, Pentox, Cialis, Restorex
had SNHL 7-31-20 - Stopped all Meds because ototoxicity  Heat/traction/VED are working.

Sonic

Quote from: Mikel7 on December 01, 2022, 12:08:41 PM
This website offers hope for a lot of individuals and some things work for some and not for others. Traction worked for me and restored almost all of my lost length of 1 1/2 inches - along with girth.

Always great to read when someone got their condition improved by self help. Out of curiosity which traction and VED devices did you use?

Also good point about the sections with Dr. Trost and Eid. That is actually incredibly awesome to have expertise like that available to gain knowledge from. It would be nice if old time members would at least drop a post from time to time but it is what it is..
28 years. Started to develop a rightwards curve in June 2020.
narrowing on right side and about a 20-25° curve to the right.
Weakened erections and instability due to narrowing.

hope4thebest

Quote from: Kobegianna on November 30, 2022, 05:57:36 PM
All the other treatment modalities like supplements tractions, VED , etc. honestly really don't do much and will never ever get you back to 100%. In all honestly supplements will do absolutely nothing to cure a bend or  hkurglassing. Possible help for pain? Who knows. VED in my opinion is snake oil. Probably cause more damage. Traction only for curvatures and even those people that find success seems anecdotal.

But what about G Paulis studies showing significant improvement with supplements and even complete 100% cure with supplements+pentoxi injections in a 3 case study?

It is possible. It just seems that many people may not want to accept that it will take a few years of commitment to a treatment plan, instead of hopping from one thing to another.
Trauma 2022 August, first deformation seen 2022 November. Very mild curve to the right. Indentation on the right side below the glans. Looking for treatment options. Initially almost complete Erectile Dysfunction, fixed by treating nutritional deficienes.

FrankPD

Quote from: Mikel7 on December 01, 2022, 12:08:41 PM
This website offers hope for a lot of individuals and some things work for some and not for others. Traction worked for me and restored almost all of my lost length of 1 1/2 inches - along with girth. The supplements I took possibly helped me in reducing inflammation. It also got me into eating better and developing a strong exercise regimen.  Heat therapy also worked for relieving my pain and accelerating healing. There isn't another website around that offers what is here. We also have 2 awesome Dr's that are here to answer questions for free! What other website offers that? It is sad that some members don't see the value of a website of this kind.

I agree, I'm thankful I stumbled on to this forum by accident.  Saved me in more ways than one.  I'm a lifer now.  Thanks guys! 

All the best.
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!

Asphyxia

Quote from: Mikel7 on December 01, 2022, 12:08:41 PM
It is sad that some members don't see the value of a website of this kind.


Its not hard to see the value of the site before and after getting the diagnosis of peyronies, but what do you do if you went to multiple urologists and they brushed you off and told you that your pain is purely psychological, or that you have to live with it, and your MRI results arent indicitive of peyronies, and yet your penis is curved and painful?

Sure, i used the board of dr.trost to ask him what could possibly resemble peytonies but i do need much more help than that, not only with figuring out what i have but also with understanding how to treat whatever it is, moreso if the treatment resembles peyronies treatment in whichever way and if people could still provide insight on a condition which they do not have 
because frankly, i would much rather seek help here than go on reddit and discord groups that are constantly confusing me,

is my MRI a false negative? Is it hard flaccid? Torn ligament? Torn fascia? What do i do when i dont know? Should i take supplements and cialis to get erections or am i ought to avoid erections?
This site provides very little help to people who cant get a diagnosis and seek help with differential diagnosis
or to people who have condition that resembles peyronies and might make it worse by treating it as a treatment for peyronies,
If i dont have peyronies but something else, who knows what i have done to myself by doing traction...
Age:23. Onset of symptoms: september 2020.
Curve mostly semi erect about 60 degrees, slight pain
Tried short & prolonged fasts, keto,carnivore, traction and most of the supplements.
Severe digestive issues, probably an autoimmune disorder