Don't do what I did

[Struggling1982]

Been suffering for nearly a year with painful erections, and full on Peyronies ever since a Dexamethasone injection from Dr Lue at UCSF around five months ago (no bend until he did that, wish I hadn't let him near it). After mis-reading a few posts on manual stretching on here  I decided it might help to try and bend my penis back into shape while it was erect for a week or so. The last time I tried it I felt a sharp pain and now have a thin long incredibly hard plaque running down the entire top side of my dick, and a severe (45 degrees plus) bend upwards just below the tip.

Totally devastated now as Dr Lue is meant to be one of the leading authorities on Peyronies but he did nothing other than worsen my situation. And now I've made it much worse I feel completely stuck, as I can't find any other doctors round here (Bay Area) who seem to have any idea how to help. I'm not even convinced my original erection pain was due to peyronies, so even going through potentially damaging Xiaflex treatments might not solve the original problem - the original pain came whenever I contracted my perineal muscle and still does.

The one doctor I'm still seeing has suggested Xiaflex even though I'm most likely still in the acute stage. Has anyone tried this? Perhaps understandably I'm terrified of having any more injections. Sex and masturbation is completely over for me with the pain and deformity. Thankfully my wife is understanding but it's making me very depressed.

[NeoV]

I'm really sorry to hear this. There seems to be no possible way to encourage manual stretching while also warning of its dangerous. The same goes for VED in my opinion. I know a lot of men damage their penis with some kind of penile manipulation. Manual traction saved me and still does, but I also know it could cause damage in certain cases. I'm just terribly sorry.

I really hope that in years from now the situation will improve.

[Struggling1982]

Appreciate it NeoV. I think a dedicated subforum with some universally agreed guidelines would be a good idea. I wouldn't want anyone else to degenerate their own condition to the extent I have.

[Jack1909]

Do you think the doctor made some mistake? He is probably the most known in the world when it comes to peyronies..

Best wishes btw, don't give up  

[james1947]

Struggling

Dr Lue is considered one of the leading Peyronies specialist, but he can make mistakes also.
In my opinion, you should go back to him and tell/show him what happened after his injection.
See what he will say
For help with the situation, I still think he will be the best

James

[Struggling1982]

James,

I did and he referred me to a pain management specialist :-/ Who had no idea what to say!

[Jack1909]

I think you are referring to the pain issue that pushed you to schedule an appointment. I can't believe he would not be able to say anything about what happened to you later!  

[Struggling1982]

He apologised meekly and said there wasn't anything else he could do - frankly
I was shocked. He suggested the pain management appointment as he said he couldn't help, the pain management people said they had no idea why I'd been sent there as they weren't urologists. Feel spectacularly let down and helpless.

[james1947]

I feel for you Struggling. If even specialists like Dr. Lue abandon ship when a problem occur, I really don't know what to say

James    

[QuackAttack]

Struggling,

There is a thread from 3-11 on an NIH study that suggests acute phase use of Xiaflex showed a greater reduction in curvature by 7+% than during the chronic phase. I have gone through cycles of Xiaflex and commented on the thread based on the research paper my URO presented on Xiaflex. I am still too soon after my 4th cycle to check post cycle 4 progress, but I had a reduction of about 10-12 degrees. My URO does 4 cycles, waits 3 months and does another 4 cycles. He said one of his patients went from 45 degrees to 0 degrees even though there was a little bit of plaque left.

[Jack1909]

Sorry but it's not clear if he sent you to a pain management specialist before or after you developed that plaque..
It sounds weird that once seen a plaque and a curvature he said He can't help. He must have said that after checking your penis because of the strange pain you complained about..

contact him!

[Struggling1982]

Jack: It's more that there was no significant plaque or curvature before he injected me - I'm terrified about what will happen if I go back for more, having read about ruptures and potential complications. My level of trust in Dr Lue is minimal to say the least; my interactions with him so far have taken me from having a straight but painful erection which he couldn't fix to a curved and unusable painful erection which I'm scared he could ruin beyond repair if he goes near it again. It's a gamble I'm not sure I'm brave enough to make.

Quack: that's encouraging to hear, thank you.

[melting]

I would do everything to dampen down the inflammation during acute stage if I had the chance again.
Iodine + DMSO. Vitamin C + DMSO. DMSO + Magnesium trying to avoid the calcification locally.
Also light stretches to avoid it "clumping" the tissues together or even very light pumping. It sounds counterintuitive after what happened to you but doing it much more lightly(but maybe longer on the time axis) is needed. You know if you cut a ligament in the legs through a traumatic injury you also have to take care to not let it grow back shorter.

Very healthy lifestyle is a must.

It might be you have some sort of underlying condition where any further intrusion will create more plaques and inflammation. That needs to always handled first. Xiaflex might help but just adding some painkiller and thats it seems not good.

IMO Peyronies Disease needs a holistic approach. For some a Xiaflex injection alone might do it. Read up on the forums and check even some of the more outlandish stuff and think about what might make sense for you to tackle the issue from more then one angle.
Its a crappy  condition we know that and some stuff is a real pain in the ass to try and do but might be necessary to get out of it. Good luck!