Upward and bend to the right

[Rocodile]

Hi, I noticed pain in my penis in September last year. After a month or two it started bending upward and then later to the right. The upwards bend is quite acute and just below the glans. I would say it is a hinge bend to about 45 degrees. The bend to the right is more general. Erections seem to normal although to begin with they were painful. I can have sex but it is a bit of an effort and passion killer to say the least! I went to the doctor who diagnosed Peyronies and asked me to start vitamin E. I have taken this for around 10 months now, every day with no results. Over the last few months there has been new pain so I am thinking that is new plaques forming. I have tried manual traction on and off but perhaps need to persist more with it. Last night I tried it with very little pressure and I started to get the 'peyronies ache' so not sure if it is doing more harm than good. I will have a consultation with a doctor in London start of November so let's see what he says. Maybe I need surgery.  

[jan.schaller1958]

I'm glad you're  seeing more than one doctor, hopefully a consultant specialist, in November since Peyroines is a complicated and highly variable disease process that really requires a Peyroines specialist to diagnose and treat. I went to my Hausarzt first for it, then insisted on a referral to a Facharzt, a Urologin who confirmed it, but she didn't seem too interested or knowledgeable about it, even denied that Peyroines has a genetic component to it, which is false (it runs ran in families like mine does- my dad had it according to my mom when I asked her), then I decided needed to see the best specialist in the world over it, and fly to the US from Germany to San Francisco, and saw Dr Tom Lue at the University of California San Francisco. All he does is treat Peyroines, nothing more and train his resident urologists in it. It cost me 500€ but was well worth. Don't fool around with ordinary consultants about this. Most have only a cursory knowledge of Peyroines and don't know how to treat it (Vitamin E doesn't work). Find find the best. Get a second, third and 4th opinion.  

[Wilson]

Hi Jan.Schaller 1958, does Tom Lue really can help us somehow? How to contact with him directly, probably personal e-mail, as their official sites don't reply. I tried to contact with David Ralph, Brian Christine, even wrote to Brian's page in instagram and still no response. Don't know what to do.

[jan.schaller1958]

Wilson,

Dr Lue's profile and website is here https://urology.ucsf.edu/people/tom-f-lue

He's actually a very nice guy and humorous. All he does is Peyroines diagnosis and treatment and train urology residents in Peyroines. He was the first doctor in the world to discovery how men even get erections, and he published a peer-reviewed article on it in 1980. Medical science didn't know even how men got erections before 1980. He told me that and I found that amazing. He's definitely the penis expert, and known worldwide.

Of course, traveling to San Francisco to see him is probably impossible until this covid 19 pandemic blows over. Unless you have dual citizenship. He might do Skype interviews. You'd have to ask.  

[Wilson]

Jan.Schaller1958, Many Thanks. Will write him.

[Rocodile]

Thanks for your posts here Jan.Schaller1958

Dr Lue sounds like a world expert on the topic. I happened to be in San Francisco last year but did not know about him otherwise I would have tried to make an appointment. I probably won't be going back any time soon. I will see what the doctor in London has to say.

I agree with so many posts I have read on here that this is a disease that has no real exposure in public and there is no appetite it seems to plough time, money and resources into finding therapies that can slow, reverse and cure the problem. I am in my mid forties and married so me and my wife have 'managed the problem' together. If I was  somewhat younger like some of the people here, It must be really devastating.

[bustedchubb]

I blame the AUA mostly.  They set the 'guidelines' on how to treat the disease and it mostly a crock of outdated nonsense, and the lemming urologists just keep falling back on. How many of you heard the uro giving you the diatribe that oral drugs like pentox, etc, do nothing and will not budge.  Same with VED, even though there is evidence that VED use can in fact help.  Even the Lue procedure, as ass kicking as it is ( just see Benjamin62s posts and video), only a handful of surgeons even will recognize or even do it.    

[Rocodile]

Had my telephone consultation with urologist. He says VED is my best bet at the moment. I'm being referred somewhere to discuss it and how to use it.  

[jan.schaller1958]

Rocodile,
Totally agree this is a fairly ignored topic in medicine. Every doctor knows what it is, but they only know just so much about it. Urologists know more, but they rarely specialize in its treatment. I think the apathy in the medical
World has to do with 1) 90% of men never get it; 2) it's benign and will never kill you; 3) when it does hit the Medien age is 55-60, and who gives a hoot in h@ll about male sexuality for men in that age group (except for men in that age group of course). All good reasons for urologists to put Peyroines on the medical back burner as they say. And, I know some will disagree, female medical issues always seem to get more attention.

If you went out on the street, I'd bet over 90+% of the adult public of all ages had never even heard of Peyroines disease. That's the problem. And, it's bad enough to get Peyroines like I did at 56. I can't imagine how devastating it must be for young men in the 20s and 30s. The physical and psychological devastation must be intolerable. I never even heard of Peyroines in my teens, 20's, 30's, 40's and not really until I got it in my mid-50s. Fortunately it didn't hit me as bad as most (never had ED, etc). But still, it's a rotten thing to have.

Fortunately there are a few dedicated world experts in it. Like Dr Lue, and a few of his disciples. There are a few really good andrologists in Europe too, but it's really a niche practice. You've really got to turn over ever stone to find the good ones.  

[jan.schaller1958]

Bustedchubb,

I agree with you that the AUA is ignoring Peyroines. But, my experience with getting Pentox prescribed was the opposite. The docs and urologists hand it out like it's nothing. I'm doubtful of its effectiveness (That's a maybe) and they usually give you viagra /cialis and just let it go at that. Neither or both of those drugs are going to cure Peyroines. The ED drugs will help with ED is all, but that's about it. They're not really treating the disease. You have to see a Peyroines specialist, and there are not many of them around, so you have to look hard.  

[NeoV]

Cialis does treat Peyronie's by reducing scarring. READ the studies everyone. Whether you take it is up to you.

[Rocodile]

Jan,

Agree 100% with you. The urologist I spoke to actually said that because it isn't life threatening there is little point in going down the surgery route. He didn't even think to enquire about my psychological well-being regarding it. I know this isn't his speciality but some empathic support would be welcomed. I can't imagine what it is like for the guys in their 20s and 30s that get this. I was 45 and I certainly wouldn't want to be any younger at first onset of this disease.  

[jan.schaller1958]

Yes Rocodile,

Totally agree. I can't imagine guys in their 20s or 30s getting this (or even 40s). There are only a select group of Peyroines experts in the world because I guess there's just not that much interest in it. Just because it's not life-threatening the urologists just have a ,,get over it" attitude. They completely ignore the psychological damage this causes. And it's not like losing your hair or something where you can just go get hair transplants (even if they aren't cheap) and it's a quick fix. Like some purely cosmetic thing. Peyroines hits you where you live. This isn't just some cosmetic issue, but many docs seem to treat it like that.

And NeoV, I've had that conversation about cialis with doctors before and they all said cialis had no therapeutic effect on Peyroines whatsoever. What studies are you talking about?

[TonySa]

Jan-just google it.  Making unsubstantiated claims without checking it out is just reactive and irresponsible.

[LWillisjr]

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