Hate to reintroduce myself ...

[nemo]

Hi guys, Nemo here.  

I've been a member of the forum for years, generally only dropping in rarely to see if anything was new or promising on the treatment front.  I'm 42 and have been living with the fairly mild aftereffects of a bout with PB back in 2001.  At that time, I discovered a couple nodules, developed painful nocturnal erections within a few days and then had a 30-degree bend.  I did Topical Verapamil, which was the thing to do at the time, and after about a month, the bend released (I doubt it was due to the Topical Verapamil) but ever since, I've dealt with distal flaccidity in the glans, just beyond the scar tissue. All things considered, this is getting off pretty light in terms of Peyronies Disease. I've felt blessed in that regard.

Unfortunately, to my horror, I think that after 12 years of stability, and for no apparent reason, my Peyronies Disease may be back.  About 10 days ago I noticed two small soft nodules in my shaft, way back by the base, not in any way near the lesions from 12 years ago.  They seem to be possibly between the two corpora, thought it's hard to tell, just slightly left of center.  

Thus far, there's no pain, and no bending or denting.  In fact, I can't be sure how long they were there before I noticed them, I don't check religiously anymore, but they're definitely less than a couple months old I'd say. There's never been anything there before.

Of course, for us, finding a lesion is like finding a tumor. I immediately broke out in a sweat.  Thankfully, my new GP is pretty open-minded, and I explained the situation to him and he gave me a prescription for Pentox.  This is SO much different than just a few years ago when I couldn't even get urologists to prescribe it.  So I'm taking Pentox, Ubiquinol, Acetyl-L-Carnitine, Vitamin E, and L-Arginine.  Back in 2001, literally, all we were told to take was Vit. E!  

My only desperate hope is that it's not Peyronies Disease, but rather some sort of vein issue, as the bumps line up roughly with the dorsal vein and I can feel a small vein directly above both of them.  Some sort of interseptal bleeding or clot or something ... that's my hope anyway.  There simply wasn't any injury or ANYTHING that would have made me worry about a Peyronies Disease flareup.  And after 12 years! Just out of the blue.  

All this is to say ... so very depressing.  I feel like I've got the sword of Damocles hanging over my head, and every day I get an erection anticipating pain or bending, knowing it could take who knows how long to show up.  Every time I see my erection, I wonder if it will be the last.  The only thing that would put my mind at ease at this point is if the nodules went away, but that's a long-shot.  I am SO thankful, I can at least take the Pentox and COQ10 right here early.  

At any rate - I'm back on the boards.  I'll let you know if and how this develops.  Truthfully, I think I'm only posting this because misery loves company.  We gotta be there for one another, because the world certainly knows nothing of our pain.  

Best,
Nemo      

[nemo]

Thought I'd update my story, as I've found looking at my postings over the years to be a sort of journal of my own Peyronies Disease history, and quite helpful in recalling things.  Whether this is helpful to anyone else, not really sure.  

It's been about a week since my last post - that means about a two-and-a-half weeks since discovering nodules and about a week-and-a-half on Pentox (and Ubiquinol, ALC, L-Arg).  The summary is there's no real change.  There's no pain (though there is a mild tenderness, giving the impression if I got rough with it, it would hurt), no distortion, bending or dent, and curiously, my erections are actually better than they've been in a while (not purely because of the Pentox - they'd been like that a few days before I noticed the nodules too).  

The nodules do seem a little more defined, or maybe they're slightly harder, I'm not sure, though it depends ... if I have a nice strong erection (and masturbate), in the half hour or so after, they'll feel very soft and much less noticeable.  I have done this every day, under the theory that to go for very long without erection would allow the scarring to contract tissue and precipitate a bend or dent - in other words, I'm trying to (gently) make sure there is plenty of natural stretching to the tissue.  Even started using my old VED yesterday, just getting the penis up to about 50-60% several times, to draw fresh, oxygenated (hopefully Pentox-laden) blood into the tissue.  

Bottom line - so far (two-weeks in) the good news is: no distortion, good erection, no pain.  Bad news is two easily palpable plaques, leading me to be almost certain this is Peyronies Disease, not some blood clot (even though they seem to be directly underneath and in-line with the deep dorsal vein.)  

Psychologically, this is taking a serious toll.  I surf the net all day researching Peyronies Disease, wondering how this could have flared up after 12 years of "stability," imagining the absolute worst of how scarring so far back toward the base could wreck my erections (and life).  You know - worst case scenario thinking, to the point of researching implants.  

In my brief moments of hope or optimism, I imagine the Pentox is jumping on this so early that it will prevent the lesions from doing damage, keep them from impairing erections or causing bending, and at some point cause them to shrink and maybe even go away entirely.  Fantasy perhaps, but it's more than I had 12 years ago, when "wait and see" was all we had.  I do seem to recall that when I had my initial bout with Peyronies Disease back then, pain and distortion followed the discovery of nodules pretty quickly, so I'm at least hopeful this episode is off to a slightly better start in that respect.  

To be continued ...

Nemo  

[james1947]

Nemo

Why not to add low dose Cialis (2.5 mg) to your treatment.
I read on the forum that the combination of Pentox and low dose Cialis helps softening and even dissolving the plaques.

James

[nemo]

James, frankly, I was so thrilled my GP jumped on the Pentox thing, Cialis didn't even occur to me.  He's also referred me to a urologist who I'll see in about three weeks.  Of course, as you know, a random urologist may not even like the Pentox; you never can tell.  I'll consider asking the GP for the low-dose Cialis - I just don't want to push my luck.  

[nemo]

Updating at about 3.5 weeks on Pentox; about one month since discovery of nodules.  

No real change in plaque size - no penile deformity - no pain to speak of.  I've added into my treatment about 2.5 mg of Cialis every night (from an old stash I had), which is increasing my nocturnal erections (which I haven't really had much of for years).  These nocturnal erections aren't painful, per se, but seem slightly achy if I move it around of flex my kegel muscles. It's very mild.  

I continue to get a good strong erection every day and gently masturbate in order to both keep tabs on what's developing erection-wise and ensure there is a period of stretching/blood flow every day.  These erections are pain free and show no distortion. I also (a few times a day) do a flaccid stretch to make sure my length is remaining constant.  

The plaques in the flaccid state are pretty easily felt and while they do not hurt, they are slightly tender, giving the impression that if I got rough with them they would indeed hurt - so obviously, I don't. I really believe they are not true dorsal plaques but more on the septum, inside the left corpora.    

So bottom line at one month into this mess - two palpable nodules, no distortion, no pain, good erectile quality.  I'm clinging to hope that the Pentox, Ubiquinol, and Cialis will prevent these lesions from causing distortion or ED, but as I mentioned before, it's like the sword of Damocles hanging over my head - I feel like at any moment, the nightmare could kick into overdrive. I've seen too many stories of guys who didn't see distortion for several months ... which means 2014 is shaping up to be a pretty tense year.  

Hanging on,
Nemo

[jackp]

Nemo

Try and relax.  I have learned over the years that 99% of our worst fears never happen. Don't get obsessed with this just live your life one day at a time.  

Good Luck

Jackp
http://jackp-penileimplant.blogspot.com

[nemo]

Very true, Jack.  For what it's worth, every time I see my erection nice and strong and true, I shower it with positive reinforcement, like one talks to a plant. Who knows - this disease is so mysterious, maybe the penis also responds to compliments!  

[nemo]

Journal entry: At 5 weeks since discovery of nodules (4.5 weeks on Pentox) things are staying the same.  

Nodules are easy to feel, just slightly tender if pressed on, and don't seem to either be getting larger or smaller. In that sense, they've been the same for about 3-4 weeks.  

Still no distortion in the penis has occurred except for perhaps a very slight depression that I think corresponds with one of the nodules, but honestly, I can't be sure if that's new or has been there for years - it's so subtle I can't be sure. Functionally and aesthetically it's a non-issue.  

No pain. Good erections with the daily low dose Cialis. If it weren't for the very slight tenderness to the nodules, I could even pretend there was nothing wrong, but as it is, I still wait nervously, daily, to see if they will suddenly "kick in" and cause bending, shortening, cut off blood flow, etc.

I've dropped the L-Arginine and ACL and am sticking fast to the Pentox and low dose Cialis.  Fingers crossed that these nodules might somehow exist without causing noticeable damage.  Don't know if that ever really happens, but that's all I can hope for at this point. With every week that passes with no further negative development, my hope grows, but realistically, I know that at any point during the "active phase" the hammer could drop.  


Best,
Nemo

[james1947]

Nemo

I don't want to scare you but the "active phase" can reappear after the stable stage at any time. It happened to me.
From the other side, you had no changes to worst in the 5 weeks while on Pentox and low dose Cialis and this is a very good sign that your Peyronies stopped progressing.
I was adding Ubiquinol to your treatment (or CoQ10, much cheaper and good if you are less than 40).

James  

[nemo]

Yes, James, I failed to mention, I'm taking Ubiquinol too - that's my cocktail: Pentox, Cialis, Ubiquinol. Meeting with a urologist in a few weeks, only because my general practitioner wants me to (he doesn't realize that by prescribing Pentox, he's already been of more help than most urologists).  

I'm hoping the Uro will prescribe Pentox himself and Cialis (I'm using old Cialis and running out). If he won't, I'm concerned my general practitioner won't refill the Pentox based on the Uro not prescribing it, assuming the Uro is in charge of the case. If that happens, I'm going to have to turn to the "black market" for both drugs, and that will get expensive fast. As it is, my general doc gave me a three month script for Pentox.

Fingers crossed!

Nemo

[james1947]

Nemo

It doesn't need to be expensive.
If you will need, always have Riverfarmacy.

James

[nemo]

James, that would be fine, but River Pharmacy requires a prescription if I read their website correctly. That's the real issue.

Nemo

EDITED TO ADD: Apparently they DON'T require prescription. Just placed an order. Thanks for the info, James.  

[james1947]

You are welcome Nemo.
River is my source for all the medications I am using as I don't have insurance and in the local pharmacies imported medications are more than 5 times the price of river.

James  

[nemo]

Just to update on the "situation" ... now 7 weeks in.

Over the last couple weeks, there's been no real change, but I do think I'm piecing some things together. I believe the two lesions I'm feeling are indeed on the septum, and they are connected to (causing) two finger-tip sized indentions I have on the bottom side of my right corpora.  They line up almost perfectly, I'd just never realized it.

In truth, I believe these indentions have become slightly more pronounced over the period that I've been dealing with this recurrence of Peyronie's.  Ever since I discovered the inflamed nodules, I've been expecting curvature or something on the top side (dorsal) of the penis, when in fact, they're connected to the dents on the bottom side that I've had for at least 5 or 6 years.  When I discovered these dents years ago, I wasn't sure if they were Peyronies Disease or not (thought maybe I'd just never noticed them), but now I'm sure they're Peyronies Disease dents and connected to the lesions I'm feeling now. (This is all well to the rear of where I initially had classic Peyronie's (with a bend) out near the glans in 2001).

So, while I'm still pain-free, bend-free, I do think beyond a doubt this is a recurrence of Peyronies Disease, for no apparent reason - and in this case, it's made slightly deeper two fairly non-problematic indentations. Very distressing though to know I have multiple areas in my penis that have Peyronie's damage or potential for it.

My hope at this point is that the situation will not progress beyond this, and at some point, the lesions will fade to softer tissue, allowing me to breath a little easier that this flare up has settled down.  Until then, I'm still hitting the Pentox and Cialis like crazy, and keeping my fingers crossed. A nervous way to live ...

Best,
Nemo  

[Norm]

I quickly scanned through your posts on this thread. I don't see where you have tried VED. If you haven't, I think it would lend itself well to your case by helping pop out the dents, so to speak. The repeated blood flow in and out sure can't hurt. You should seriously consider it.  

[nemo]

Norm, I own a VED and used it in the past but frankly, I'm a little cautious about messing with this thing while it's in an inflammatory stage. I'll grant you, this may be the precise time to use the VED, but I'm probably over-cautious. I make sure to induce a normal erection every day and through the Cialis, it's generally a really good one. And also because of the Cialis, I'm getting nocturnal erections.  

Nevertheless, point taken - I may need to incorporate some VED into the routine.  

[cowboyfood]

Hey Nemo, you might consider adding vitamin D3 as part of your cocktail, see George999's many posts about this vitamin. Anyway, what you're taking is what I did along with D3 and consistent VED usage.

I understand your VED caution, but, IMO, it's analogous to getting an erection where the main distinction is that it's an engorgement caused by external forces as opposed to an erection caused by mental/physical stimulation.  So, I say use it.

CF

[nemo]

Thanks cowboy.  I actually supplemented with D a few years ago and my levels were looking good; haven't checked them in a while though.  

I've determined that what I'm dealing with here are two lesions on the septum, which are creating two corresponding dents on the underside of the right corpora.  I'm holding my breath that the dents don't get worse or turn into true waisting, as right now, they're noticeable to me, but not structurally significant or really hurting anything.  

I've got to keep on top of preventing these two inflamed lesions from getting worse - that's my main priority. Hopefully, the Pentox and Cialis are my best friends here.  I manage to get at least one significant erection every day, as well as plenty of manual stretching to keep things "loose."  It's amazing what the daily Cialis does in this regard.  My penis is always "warm" to the touch and clearly much healthier with the increased blood flow.  And at 5mg a night, I have no side effects, which is great.

Holding on ...

Nemo

[nemo]

Met with a local urologist today for the first time regarding this flare-up. Dr. Bihrle of Dartmouth Hitchcock Hospital in Hanover, NH.  He seemed pretty current on Peyronie's treatments and condoned my continued use of Pentox, low dose Cialis and VED if I want to use it. We talked about Xiaflex, but he agreed my situation (a couple indentions) isn't really ideal for Xiaflex, and I'm not wanting it at this point anyway. Basically, I just wanted to know if he'd sign-on with Pentox and Cialis so when my scrips from my general practice doc run out, I can get scrips from the Uro and not be dependent on India/Canada/Internet.

Pleasantly surprised. This is much different than when I first had Peyronies Disease in 2002. In my limited experience, there seems to be an increasing number of Uro's up-to-speed on Pentox and PDE-5's for Peyronie's.  That's good to see.  

Two and a half months in, I'm still fingers crossed these two indentations don't get worse. As they are, they're noticeable but not causing me any pain or problems.  

Nemo