Two and a half years still progressing

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welshwales

I'm writing this post in the hope that there are others who will identify with my case. I was diagnosed with peyronie's two and a half years ago with a single site of plaque. There was no curvature at the time and no symptoms other than occasional pain during intercourse in some of the more athletic of positions. A few months later and i developed an hourglass effect, but it wasn't a problem, just looked a little odd. Then I started developing other scars, and I started to bend to the right. Again not really a problem, sex was still possible but certain positions were awkward. But I began to become a little self conscious as my partner seemed less inclined to handle my penis as she used to and would avert her eyes, but she denies being affected by it. Now I have 5 distinct lumps, and my penis has a 45° bend about half way down the shaft to the right. Length has been reduced by around 1.5-2 inches (5cm I think) and the upper half of the shaft has significantly reduced in girth, by about 50%. It looks really odd, and I am unable to maintain an erection for more than a few minutes. I'm only 33 years old, and I'm feeling pretty damned sorry for myself! What I'm worried about now is that the newer lumps are going to cause further bending and girth loss. I'm not so bothered about length as I'm over average, but if the lower half of my penis starts to become misshapen and skinny I really don't know what I'd do. The bend is manageable, intercourse is quite feasible. It's the loss of girth that has occurred over the last couple of months that has happened so quickly that has shocked me, and I'm just avoiding opportunities to have sex. I've not been intimate with my wife for over two months now, and I'm worried about what it's doing to my relationship. As I'm sure all of you must have thought at some stage "why the @#%! has this happened to me!?" This crap really sucks. I was told Peyronie's rarely progresses after the first 18 months. That was not true in my case, as 30 months has gone by and it's still progressing. Does anyone else find this to be the case?

nemo

welshwales, very sorry to hear about your progression. The sad truth is, there is no rhyme or reason to Peyronies Disease, it just does what it will.  I was "dormant" for 12 years and now suddenly, for no apparent reason, have had a flare up.  There's just no telling what triggers it (in absence of any injury).  

Are you doing anything to treat your Peyronies Disease, like Pentox, VED therapy, etc.?

Best,
Nemo
51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

emasculated

Peyronies Disease tends to be much more aggressive in younger people (under 40).


"Without health life is not life; it is only a state of languor and suffering - an image of death."

Norm

Welsh,
I would strongly suggest that you start VED therapy. The VED helps to reshape and rebuild your penis. It forces blood to flow in and out repeatedly and stretches your tissue in a uniform manner. It could help rebuild a shape that is much more normal. We all feel for you, man. But you have to do something. This is not going to improve on its own. You have to be proactive.
All the best to you,
Norm
Plication Surgery Dec. 2013. Straight Again!

welshwales

Nemo, I was initially recommended to use vit E, but gave up on it after 9 months due to continued progression. Plus the lack of scientific evidence was startling. The first time I heard of pentox or VED was on this site. This is something I shall now pursue. Fear is a great motivator! Thanks Nemo.

Thanks also norm and emasculated, your comments are much appreciated!  

skunkworks

Hey Welshwales, I was just reading another post by you here about relationship problems, and went back through your posts to find out what treatments you're using and here I am.

Personally I think there is a lot you can do treatment wise to help your situation. This is what I would recommend (in priority order):

Pentox is an absolute must - Pentoxifylline treatment and penile calcifications in men with Peyronie's disease  and I also recommend using vitamin E with it - Striking regression of subcutan... [Int J Radiat Oncol Biol Phys. 1999] - PubMed - NCBI  and Striking regression of chronic radiotherapy dam... [J Clin Oncol. 1999] - PubMed - NCBI.

You would be well served to take some time and read up on this forum about what kind of vitamin E is best and what you should supplement with to keep it safe (vitamin k).

Traction device.  Must be spring loaded and some options on the straps is a good idea. Penile traction therapy for treatment of Peyronie'... [J Sex Med. 2008] - PubMed - NCBI

Coq10, needs to have bioperine for increased absorption, I prefer the ones in oil gel caps rather than dried capsules. Cheap and effective -http://www.ncbi.nlm.nih.gov/pubmed/20720560

Acetyl Carnitine - Acetyl-L-carnitine vs tamoxifen in the oral therapy ... [BJU Int. 2001] - PubMed - NCBI Cheap and backed by research.

I think you should try the above for a year. If things have not improved to a place that you and your wife find acceptable, then maybe it will be time to start thinking about an implant. We have a few members here who are VERY educated on that matter and can help you make the best decicisions, jackp for instance.
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]

melting

Similar to me. Had one big lump and then several smaller ones happened over time.
Peyronies Disease needs a multi dimensional approach. I suggest you to read all the forums here(including alternative treatments) and get very informed(cause most Docs are not) and then make educated deciscion on taking action.

Daily Transdermals and Traction/VED solved my Peyronies Disease https://www.peyroniesforum.net/index.php/topic,12587.0.html (DMSO+X)

emasculated

@welshwales: The 18 month rule is simply false. Have you been to a real specialist? ED can be caused either from psychological problems or from fibrosis. Maybe the plaques have attacked the corpus Cavernosum which might explain the ED and also the shortening.
"Without health life is not life; it is only a state of languor and suffering - an image of death."

welshwales

Skunkworks, thank you very much for that list. I really want to get on pentox. If my general practitioner won't prescribe it at my next appointment next month then I am holding out hope that my new uro will, when I finally get to see them. My old uro was worse than useless, so I asked for a new consultant, but that means going back on the waiting list. Regarding other supplements and medications, I have complications due to pre-existing serious medical conditions and a long list of meds, so any new ones have to be run past my other specialist consultants before I can take them. Pentox has been okay'd by my neuro, physio and osteo, so I just need a uro willing to prescribe it. It's all got a bit overcomplicated. I'm also using a VED, which I obtained recently. I also want to get on low dose cialis, as my own research shows no contraindications with my current meds, same goes for viagra. With some supplements there is no data regarding contraindications, so taking them would be a risk.

Quote from: melting on April 20, 2014, 06:43:33 AMI suggest you to read all the forums here(including alternative treatments) and get very informed(cause most Docs are not) and then make educated deciscion on taking action.

I've learned this the hard way, but I think I'm getting on track now. My old uro sucked, but I've been told the one i'm being transferred to is experienced with treating peyronie's. But I'll be taking my research from this forum with me for backup. Hopefully he'll be more helpful than the last one.

Quote from: emasculated on April 20, 2014, 12:34:03 PMThe 18 month rule is simply false. Have you been to a real specialist? ED can be caused either from psychological problems or from fibrosis. Maybe the plaques have attacked the corpus Cavernosum which might explain the ED and also the shortening.

To put it simply, I can't afford to get to London to see a Peyronies Disease specialist in a private clinic. Paying my mortgage takes priority. So I must rely on the NHS. As I mentioned above, I'm being transferred to a new uro who apparently is more knowledgeable re Peyronies Disease.
As for the ED, I believe that no matter the cause of ED, there will always be a psychological component. When it first happened it was sudden and totally unexpected. I didn't think it would happen to me when it did, at 33yrs old. It coincided with a particularly aggressive progressive phase of the disease, when I lost about 20% length and 50% girth from below the glans to half way down the shaft. I do believe that it has attacked the corpus cavernosum, as you rightly point out. But there is a degree of "stage-fright" and diminished confidence affecting me for sure. Getting past the psychological aspect is going to take time, as I come to terms with the physical damage done by Peyronies Disease. My original uro made me think that there was no reason to worry much over a little fibrotic mass. I feel like suing the idiot now.