Hourglassing

[Arbalest]

I'll just briefly preface this by stating that, although I'm a first time poster, I've followed this community a great deal since my life was rent apart by peyronies 12 months ago, and I've taken a great deal of solace from it. No matter how bleak the outlook might appear, or how tragic the circumstances, there is comfort and solidarity to be found in being one of a number. From a brief glance at the conventional literature (i.e. glossy implant-brochures depicting sympathetic-looking octogenarian couples), I had assumed I was something of a medical 'unicorn'; perhaps the only man under 40 to have ever manifest this harrowing condition!

Right, well I'll get to the point. I'm 23 and I got into this mess exactly a year ago. I'm sporting about 4 modestly-sized palpable plaques located distally, and a 15-20 degree double-whammy of a dorsolateral curve. Lost a bit of girth, perhaps a small amount of length, but I'm pain-free and functional and dealing fairly-well mentally. Been stable in those respects for roughly 5 months, but was quite alarmed over the last couple of weeks to notice some hourglassing developing at the base (where I had hitherto thought myself complately plaque-free).  

I have been taking pentox, cialis, arginine, and ubiquinol religiously for the last 6 months or so - but could anyone recommend any specific strategies for dealing with hourglass deformities? Is there a general consensus on whether they respond better to VED or traction?

Not quite sure why there was such a lengthy (10 month or so) delay from original onset, but I did hear that hourglassing is something of a late-game symptom. I'm completely in the dark as to what to expect in terms of natural progression (definitely starting to realise that the neatly-bipartite acute-chronic divide is a touch on the reductive side) - so if anyone has any personal experience, or really anything to say on the matter, I'd be very grateful to hear it.

Anyway, keep fighting the good fight you lot.
Best,
Arbalest.

[Old Man]

Arbalest:

Just read your post about your hourglassing symptom that has shown later in your progression of Peyronies Disease. Yes, this condition does respond to therapy with the VED. I have had several bouts of Peyronies Disease during my life. The VED was the only treatment/therapy that caused the condition to recede. I have been the victim of Peyronies Disease since the age of 24, so I know the route you are taking about this horrible mess.

My hourglassing symptoms went away in 1995 when I was prescribed the VED for ED. A radical prostate surgery left me totally impotent with the usual curves/bends, plaque and several nodules of medium size when I underwent 12 VI injections. It took the VED therapy with the old Osbon Esteem one cylinder manual VED to get rid of my Peyronies Disease symptoms including the hourglass effect in two places. My shaft with the hourglass looked like an "S" curve. I used this VED therapy for a bit over a year total to get any good results.

Today, after all the treatments, meds (all kinds of pills) and the VED to get me as straight as I was before Peyronies Disease. I use it several times a week now just for maintenance of what I gained with the device. It is possible that the VED therapy could help your with your problem. At least it is worth a try.

Let me know if I can help in any way with your choice if you decide on using the VED.

Old Man  

[Arbalest]

Good grief, 58 years Old Man! You've truly plumbed the depths. Thanks for your advice - I think I'll definitely take the plunge with the VED now (I had been a little concerned about causing reinjury or protracted inflammation before).

Would I be right in assuming that things remained fairly stable between your original bout and the secondary episode associated with your prostatectomy? In your personal experience, do hourglasses tend to stabilize quickly after manifestation, or progress insidiously for months and years? Things are manageable at this point, but can't really afford to get much worse.  

[Old Man]

Arbalest:

I have gone through many bouts and different phases of Peyronies Disease. So, don't remember the exact time and what happened in each time the nasty mess receded and then came back. However, I just rolled with the punches of each episode and through time they either healed themselves or was resolved with whatever therapy I used at the time. Each and every case of Peyronies Disease is totally differently from any other, so each individual has to determine what works for him by using the experience of others and try some method of recovery, etc.

The VED therapy has proven to help a lot of guys on and off this forum, so you should read their efforts in the VED board section and decide which route you want to take with the VED therapy. It is not an overnight type of therapy and one must keep their patience in doing it. It was the last thing that worked for me.

You can locate the VEDs links in posts on the main forum home page under the VED board section. If you are not able to find them, just let me know and I will post the best pricing information that I have at the moment.

Old Man

[mercurza]

Arbalest,

You are definitely not alone. I am 27 and this all started when I was 25. For me, it took about 20 months for any sign of deformity to show up. And at first there was an indent, then hourglassing, and now a  20 degree  bend downward and to the left. I too have 4-5 plaques (each about pea-sized, some like ridges). The plaques change daily (get longer, shorter, change shape) and thus the deformations change from time-to-time as well. So in response to your question, it seemed to me the hourglassing was a mid-stage deformity, but mine is still changing so much even 3 years in that I have no idea what to expect anymore.

Keep us updated.  

[Arbalest]

Hi Mercurza,

It's a mess eh? Can be quite tough to keep ones mental composure when it feels like our present and future happiness is at the complete mercy of some arbitrary destructive process.

All my changes advanced IN SPITE of Pentoxifylline - the hourglassing manifested about 6-8 months after I first began a regular regime with the drug. Can't say for sure whether things would be worse now if I hadn't started taking it, but it certainly hasn't alleviated the feeling of powerlessness; that this condition is just going to do what it will, and we have to grit our teeth, make our concessions, and try not to get derailed by it. I think the worst terror comes from speculating over all the worst case scenarios and the unknown. If I could be told, categorically, right now, that things - although clearly deformed - would remain as they are forever, I would not only be relieved but OVERJOYED. I really do think that the mind is the true battlefield where this war is waged. As far as my own approach - I know how pernicious a presence this condition can be - so I try to basically accept it, know that I'm doing all the practical things that I can, keep the measuring, double-checking, medical-website and forum trawling (I mean the compulsive, unhealthy kind) to a minimum, and live my life.

I think that you mentioned elsewhere that you have a supportive wife. I was lucky enough to meet my present girlfriend 6 months ago, right when this carnival was kicking off, and she's been invaluable in getting me through it.

Ah, better try to steer this ramble somewhere into the vicinity of 'on-topic.' Following Old Man's advice I've resolved to take up (gentle) daily traction and VED - it's been a year, so I feel like I've given the apocryphal 'spontaneous recovery' it's window of opportunity. Combined with the pentox and other auxiliaries, hopefully I can wrestle the swan-necking under some kind of control, and keep things stable for as long as they'll oblige. Have you tried any of the manual approaches yourself?

Anyhow, good luck mate.

[mercurza]

Thanks for the post. You said it all right and actually really helped me out knowing there was someone in the same boat in terms of just trying to get on with life. I think the 3 years of obsessiveness with this thing - the daily self-exams of the lumps, measuring, websites, thinking there is more wrong than just Peyronies Disease... has mentally and emotionally taken its toll to the point where I am just done with it - I hate having Peyronies Disease in the back of my mind EVERY minute of the day.

So honestly, the only therapy I have done is Vitamin E and daily Ibufrofen regimen (which seems to help with pain if taken after sexual activity). I have not done any manual exercises... any recommendation for purchasing a VED or traction? My urologist is kind of a "I only do something if it gets bad enough" kind of guy, so I need to get in with someone else as well there but I just don't know how to get started.

Thanks again for the post.

[GS]

Guys,

I have had Peyronies for a little over 3 years now.  I take all the supplements, including the PAV cocktail and started using a 3 cylinder VED a couple of years ago.  I also do a little gentle manual stretching after I finish my VED session.

For the last year or so, I've been basically pain free and completely pain free for the last 6 months.  For me, the completely pain free stage seemed to coincide with when I switched from Co Q 10 to Ubiquinol. But, maybe it's just a coincidence....it's hard to tell.

My curvature has gone from 45d to 35d in the 3 year time frame.  Am I cured?  No.  But, I'm definitely better than I was and I'm not in any pain.  As one of you mentioned, constant pain is the worst part of this SOB disease and if you can get rid of the pain, you can live with the rest of the Peyronies mess.

So, I guess what I'm trying to say is; there is hope for improvement and you can get better.

I wish you the best of luck...that may be part of the therapy too.

GS

[Pfree]

Thank you all for sharing your thoughts. This is amazing to me, at least I don't feel so isolated. The daily changes are maddening. Is it going away? Does it hurt more? Is it larger? How will the shape change? I couldn't write stranger fiction!

I really have to wonder if this is an auto-immune related illness. I keep reading "trauma" but I have not experienced any trauma. hmm.