"PFS Peyronie's"

Therapeutic Efforts
#1

Hey everyone,

I’m trying to collect a bit more information on PFS Peyronie’s. I thought it would be helpful to have a central repository of information on it here, as digging for clues all over the forums is tough!

Common patterns I’ve found so far from my forum-digging:

Description:

  • Curvature, especially when penis is getting erect (but it straightens out somewhat when fully erect)
  • Rotation around axis
  • When penis is getting erect, the top and the bottom harden first, causing an hourglass shape.
  • Unlike regular Peyronie’s, no plaque and no pain when erect.
  • Bend is curved, rather than there being an angular kink (angular kink being more typical of regular Peyronie’s)
    I have had the following (have not had this corroborated on the forum):
  • pain in curved side of penis, pain in groin (dull ache)
  • sore when squeezed
  • feeling of rotational force/torsion in groin as if ‘root’ of penis is being twisted (weird one I know)

Prospects:
I’ve found two ‘recovery’ stories describing some straightening in the curve. Chi’s story described a recovery/straightening of the curve. Guillermo Alvarez described the situation improving somewhat but it still being an issue a fair amount of time later - have PM’ed him to find out more.

Treatments and doctors:
Does anyone have any advice on treating this and on which doctors to speak to? Please let me know if so.

Causes:
Does anyone have any ideas on the causes? I’ve tried to read around the topic but I still be like… ???

#2

You can add generally penis curves to the left. Probably due to hormonal imbalances and. Of typical plaque/hardening

#3

But some people say they’ve done ultrasounds and no plaque has been found so it must be a separate mechanism?

Just to add - two other users who say the problem improved: prop (whose hourglass improved) and apostraphe. They might have been normal Peyronie’s cases though.

#4

"Curvature, especially when penis is getting erect (but it straightens out somewhat when fully erect)

  • Rotation around axis
  • When penis is getting erect, the top and the bottom harden first, causing an hourglass shape.
  • Unlike regular Peyronie’s, no plaque and no pain when erect.
  • Bend is curved, rather than there being an angular kink (angular kink being more typical of regular Peyronie’s)"

Yes, this appears to be where I’m heading. I’m in the early stages, this has only happened in the past 2 months. I’m about 18 months post-crash.

I Googled Peyronie’s forum and am following their advice. I’ve bought a Vacuum Erection Device (VED) by the brand name of Bathmate and I’ve purchased a few supps: L-Arginine, L-Carnitine and CoQ10 by their recommendations. I’ve also purchased some tribulus terrestis.

#5

Add this as well…my penis curved to the left when I crashed …it curved overnight!!!

#6

No pain when fully erect is not true! Mine hurts like hell.

#7

My case:
35-40 degree curve to left.
Two urologists examinations found “no obvious plaque” but there is no option to get a doppler ultrasound to confirm
venous leakage - erection goes away upon standing
slight ache if I apply pressure directly to the area
It makes the penis feel unstable at the base, like a two legged stool
indentation at the site of curvature.
There used to be a lot of psoriasis in the area, with lots of flaky skin but not as much now
testicles, glands, penis feels cold

#8

i personnally never experienced this one,but my dick was decreased in size but after cessation it growed again. i can get rock hard even cant feel my dick because of excess blood pressure to it, and size that shocked me it got its old size, when i was doubledose t4 medication.

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#9

i personnally never experienced this one,but my dick was decreased in size but after cessation it growed again. i can get rock hard even cant feel my dick and painfull priapism erections because of excess blood pressure to it, and size that shocked me it got its old size, when i was doubledose t4 medication.

#10

This is a major issue for me. I’ve been dealing with Propecia issues since the spring of 2012, but it wasn’t until 11/14 that I was diagnosed with Peyronie’s by Dr. Goldstein in San Diego. He said he sees it all the time in Propecia guys. In my case, there’s really no curvature – just that my dick points slightly to the left now when erect. Goldstein said he could feel plaques that were causing it. It explained the loss of elasticity, shortening of the dick, and trouble maintaining erections that I’d been experiencing.

The problem for me is that this problem has gotten much worse since then. Maybe the plaques expanded or a new one developed. I don’t know. But my ability to hold an erection declined much further starting in late December '14. If I wake up with an AM erection, it now disappears before I’s out of bed. I could at least make it to the bathroom before. And in my pre-PFS days, I’d have to pee through the hard-on and would still be stuck with it for another 15 minutes – those were the days.

I’m planning to consult a top Peyronie’s specialist here in NYC. Surgical treatment seems geared toward correction curvatures, which isn’t my problem. But I wonder if attacking the plaques would ease my venous leakage problem and allow me to at least maintain a hard-on for enough time to have a sex life. I know there are underlying issues here with androgen deprivation that have lowered my libido overall. But I still have some libido – would just like to be able to put it to use when I get it. Otherwise, I’m in a very bad place here.

#11

One of the most hopeful remedies for Peyronie’s is Xiaflex (which is NOT, incidentally, made by Merck). Read up on it here:

webmd.com/drugs/2/drug-15366 … on/details

And also Google some news stories:

google.com/webhp?hl=en#q=xi … en&tbm=nws

#12

I have a lot of the same stuff described here. Hourglass when getting erect, but not as bad when hard. No plaques that urologists can feel with their hands. Have not gotten a ultra sound yet, cuz i am not being taken seriously by urologists. Definitely am having narrowing, but once again less noticable when erect. Veins are more apparent now maybe cuz of tissue loss? I also recently got a blood test of Testosterone Total 10 ng/mL when the range is 250-1100. Free testosterone 0.36 when the range is 35-155 pg/mL. Not sure how im even alive, and better yet im still somehow putting on more muscle?

Here’s an experiment I would like someone to try out of curiousity to see if the same happens to them. Get an in betweener and then put a bag of ice on your cock, does the middle shrivvel up first? inducing an hourglass effect?

#13

I have a hourglass shape when my penis is flaccid. It’s just horrible and im scared now. Didn’t get this symptom for years, now a new thing pops out. I have no pain and my erections are normal. But sometimes the flaccid state looks like a god damn hourglass. Anyone know why this happens and what is the solution to this?

#14

An hourglass shape has been mentioned before in the forum. If you do a search you should find others talk about it.

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