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Welcome to J Francois Eid, MD - Directly answering member questions in the "Medical Professionals" section below the Treatment boards.
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Author Topic: Peyronie's disease subreddit on Reddit  (Read 5003 times)

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skunkworks

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Peyronie's disease subreddit on Reddit
« on: January 31, 2017, 08:29:21 PM »

Looks like someone has started one up or restarted one - https://www.reddit.com/r/peyroniesdisease/

Pretty huge site traffic wise so if that sub got more popular it'd probably build a good bit of awareness for the condition.
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This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

Mcrmale

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Re: Peyronie's disease subreddit on Reddit
« Reply #1 on: July 14, 2021, 05:54:04 AM »

r/peyroniesdisease has been banned from Reddit
This subreddit was banned due to being unmoderated.

(Not sure about pomphan's post - think he must have meant to post that on a totally different site)
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50yrs old gay male. 45 degree upward curve. Occurred March 2020
Loss of 1.5" of length. Loss of girth - especially around base.
NHS supplied SOMAcorrect daily use for 15-30 mins since April 2021
200mg CoQ10 and Vitamin E

Benraycamp0

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Re: Peyronie's disease subreddit on Reddit
« Reply #2 on: July 14, 2021, 01:32:15 PM »

Yea I tried to revive it but was unsuccessful :(
We do have another subreddit (https://www.reddit.com/r/peyronies/) which isn't as popular but I do get messages from people and direct them here as needed.
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26 years old. 20 degree upward curve with slight clockwise twist. Symptoms onset Dec 20.
Dr. Levine says it's not Peyronie's Disease but a slow healing wound. Saw him Mar 21 and May 21.
Traction (PMP) and supplements per Dr. Levine's recommendation.

Juan

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Re: Peyronie's disease subreddit on Reddit
« Reply #3 on: July 14, 2021, 04:58:34 PM »

Discord group could be very dinamic although a bit of a mess too.
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39 yo. Onset Oct/20. 25º dorsal bend 1cm before glans + high erection angle.
Pentoxifiline 400x3. Tadalafil 2,5. Vit E, D3, K2. Zinc.Omega3. Ubiquinol. ALCAR.
Traction with PMP.

Tobyg

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Re: Subreddit de la enfermedad de Peyronie en Reddit
« Reply #4 on: July 14, 2021, 07:19:08 PM »

Discord is good, although being honest, I can't find any way to fight disease, people don't want to organize something in common for further investigation, my life is waiting for some miracle of science unfortunately
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30 years,injured at 25.
Slight curve, narrowing and retraction in flaccid and semi-erect.
Loss of sensitivity due to peyronie and circumcision  moderate erectile dysfunction, pain.
I improved the pelvic floor with kinesiology.

Mikel7

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Re: Peyronie's disease subreddit on Reddit
« Reply #5 on: July 15, 2021, 09:54:55 AM »

For a forum to be successful there has to be a combination of 1: Organization.  2: Moderators . 3 Documented info. 4 Members. 5: A Lot of Luck.
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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.

Lostandsad

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Re: Peyronie's disease subreddit on Reddit
« Reply #6 on: August 15, 2021, 04:08:24 PM »

I wish there were more members and activity in the subreddit. It’s pretty dead every day.

Even this forum with almost 20k members doesn’t have as much activity as I would like, probably just feels that way cause I’m new and depressed/frustrated. I suppose most people here have had it for a while and are just moving on with their lives
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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

Hawk

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Re: Peyronie's disease subreddit on Reddit
« Reply #7 on: August 15, 2021, 10:27:16 PM »

We have 50 posts a day.  How would it help you if we had more?
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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

Pfract

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Re: Peyronie's disease subreddit on Reddit
« Reply #8 on: August 15, 2021, 10:35:40 PM »

turns out this is the message you get when you try to open the subreddit:
Quote
r/peyroniesdisease has been banned from Reddit
This subreddit was banned due to being unmoderated. "

It was a surprise to me...

Hawk

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Re: Peyronie's disease subreddit on Reddit
« Reply #9 on: August 15, 2021, 10:47:04 PM »

Needless to say, We have no connection or control over Reddit and we do not promote their site.  We promote our own because there is nothing comparable.
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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

Lostandsad

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Re: Peyronie's disease subreddit on Reddit
« Reply #10 on: August 15, 2021, 10:59:05 PM »

This site is great Hawk, thanks for all you the work you do. I’m just spoiled by instant gratification of this generation and thought I’d get more responses to some of my threads, that’s all.
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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

Benraycamp0

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Re: Peyronie's disease subreddit on Reddit
« Reply #11 on: August 16, 2021, 03:56:51 AM »

I moderate a relatively low active peyronies subreddit here - https://www.reddit.com/r/peyronies/

Subreddits like these are a good landing page for people to be redirected to a site like this, which is why I try to keep that active and answer questions there.
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26 years old. 20 degree upward curve with slight clockwise twist. Symptoms onset Dec 20.
Dr. Levine says it's not Peyronie's Disease but a slow healing wound. Saw him Mar 21 and May 21.
Traction (PMP) and supplements per Dr. Levine's recommendation.

beni

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Re: Peyronie's disease subreddit on Reddit
« Reply #12 on: October 28, 2022, 01:33:11 PM »

 subreddit on Reddit about Peyronie's  thought is new is really active and moderate Daly
https://www.reddit.com/r/peyroniesdiseas/
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I'm moderator for https://www.reddit.com/r/peyroniesdiseas/
it is small number but really active and all question are answered
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