Scared indentation is Peyronie's---what To Do vs. Not Do in first weeks?

[JoeJoe]

About 11 days ago, I got an erection and noticed a dorsal indentation under my glans (with no known injury).
I did an internet search and learned about Peyronie's.  I've already been on the keto diet for several years, and had been supplementing with turmeric, fish oil, ubiquinol, etc. etc.---but I quickly ordered  & started taking several recommended supplements that I wasn't already on (and I already had some left-over sildenafil pills from erectile problems I was having several years ago, but I haven't really felt the need for them in quite awhile).

I've had a couple more erections since then, and each time, I've noticed the dorsal dent, and once I thought I noticed some more hollowed/slightly indented areas on the underside beneath the glans, on each side of the urethra area---but it's hard to get a good look, because noticing physical changes induces such panic that I quickly start losing my erection!  I don't seem to be experiencing much pain, if any---sometimes I'll notice sensations of possible soreness, but most of that could easily be just in my head from obsessing over my penis.  I don't seem to be noticing any change in curvature (I woke up with a pretty firm erection last night and felt the dent, but no noticeable curve).

I've already scheduled a doctor's appointment for 3 days from now, with hopes of being referred to a knowledgeable specialist.  It seems like this is probably Peyronie's, because I can't imagine what else it could be. I'm wondering if my daily mega-dosing of Vitamin C (~6 grams) along with collagen powder before bed could have contributed to this, or some sort of inflammatory reaction from eating like half a jar of peanut butter a couple nights in a row.  When he was in his 60s, my dad started noticing knots in his palms that I think he said were Dupuytren's (which I had assumed were related to his awful diet, smoking, alcohol, OTC sleeping pills, etc), and I believe he said his brother had the same thing, so maybe I have increased susceptibility.

I've been reading all sorts of posts here, but I'm still wondering what people here would recommend as things to do vs. things NOT to do, in the very first few weeks of having noticed symptoms---things that people experienced with Peyronie's would say, "I wish I had started doing _____ right at the beginning!" or, "I wish I hadn't done _____ at the beginning!"  Especially regarding things like heat, traction, VED, erections in general, and sex.  I'm still not clear on if being in the acute phase means sex will further damage my tissues, or if avoiding sex will slow healing...  When is it safe to really *use* my penis again?!  

I just want to nip this problem in the bud---I know some patience is required, but I don't want to wait too long during this crucial phase to start healing, ASAP.  Any advice is greatly appreciated!

 

[FrankPD]

Hey JoeJoe, welcome!

This is an awesome place for support and tons of personal experiences with many treatments.  It's good that you have a spouse to talk to about this, it's a big help.

Some cases of Dupuytren's are related to Peyronies.  It can be genetic, brothers, fathers, uncles, etc.

If it is Peyronies not gonna be "nipped in the bud" it's a marathon.  I would definitely stop sex and masturbation. You may have to hold off on those for while. As for treatments wait until you get checked, you don't wanna be doing something you shouldn't.  

Hope this helps.  

[DarthPronius]

I wish i had stopped smoking and drinking right away, and started with just mild VED, cialis & pentoxifylline. I wish you hadnt used the PMP with a strap attached to my leg and going for walks, which i think made it worse.

[JoeJoe]

After having to wait almost 4 months for my appointment, I finally saw a urologist yesterday.

I described my problem, mentioning that I'd learned about the condition from this site---and he was instantly very dismissive of it as a source of information ("Who sponsors them???").  I mentioned that I'd had my family doctor prescribe me tadalafil to help prevent fibrotic formation, but the urologist was almost entirely dismissive of that, saying there was no evidence that something like tadalafil could help with Peyronie's.  I mentioned seeing peer-reviewed studies on this site, but he was entirely dismissive, saying they were a matter of interpretation, and that a site like WebMD is better for providing info.

He physically examined my penis and detected a knot under the glans, and a bit of a ridge a little further down.  So he prescribed me 400mg pentoxifylline 2x daily, and said that a third of the time, a problem like mine goes away, a third of the time it stays the same, and a third of the time it gets worse---and there's no way to tell which it will be.  I'm scheduled to see him again in 6 months for a check-up.

He did seem to think that using my vacuum device (which I bought awhile ago but never used) could help, since my issue is an indentation that it might help fill out (vs. a pronounced curvature, which he didn't think a vacuum device would help).  

So now I'm wondering if he was correct about tadalafil not helping prevent/dissolve scar tissue, and whether only 2 daily does of pentoxifylline is enough, since I see many people being prescribed 3x daily.  Seeing how dismissive he was of the tadalafil as helping prevent bad tissue formation, maybe he's just not taking treatments seriously enough and should have prescribed me 3x daily?  Should I try to contact him and push to be bumped up to 3x daily?

[FrankPD]

I'm on Tadalafil 5mg daily for about six months now, I feel like it's thinned my main plaque or it just could be the combination of things I'm doing and the Tadalafil was the icing on the cake.  Just my opinion.

All the best!