Hello I'm writing fiction about Peyronies

[Chris Overleaf]

Hi,
I'm an English writer, 57, based in London, writing a novel in which a character has Peyronie's - like me. It seems an important topic to explore and also a way into talking about male sexuality and its eventual waning - I've found it weird how this huge aspect of myself which is my sexuality suddenly seems defined by the extent of sensations I feel in one organ of my body. My wife and I have adapted pretty well to my constricted willy, thank heavens, and we enjoy sex, but I definitely get less sensation, especially once inside her.. so things seems fragile and finite. And I'm also realising that many happy couples don't have much or any sex anyway. Men may find it hard to talk about sex but it seems we find it much harder to talk about not having sex!

As for me, I'm using a pump which at least gives me some sense of potential improvement. Viagra just hurts and gives me headaches. But more than real physical problems is my sense of myself as a healthy, sexy man - as if self esteem relies on me having a big hard and straight erection at all times.  

Anyway... I'm keen to chat to anyone who finds this interesting. And I'm not planning to copy and paste things people write into my novel - it's just general research. I can tell you more about the story if you're interested ,but that's enough for now. It's good to find this place! Thanks    

[emasculated]

I'm looking forward to reading it. It would be good if this disorder had any kind of presence in the public conscience, like ED and impotence has. Because then maybe it would be easier for researchers to get an appreciable amount of funding for it.
It's interesting how keen celebrities are to talk at length about highly personal issues. Like Angelina Jolie and her breast removal / reconstruction. But apparently famous people in whatever field just don't get Peyronie's. I mean for almost every disorder you can name one famous guy / woman who suffere(d) from it either posthumously discovered or by self admission. But Peyronie's.. no.. zero. Even though it's really a disease you can not ignore as hard as you try. So no one talks about it.  

[Chris Overleaf]

Yes - I agree we need a celebrity champion for Peyronie's and male issues! I realise already I'm worrying about how to make clear my character isn't exactly me and anticipate him overcoming difficulties to have a good sexual time one way or the other.
Anyone read anything fictional they found useful in dealing with this stuff?  

[damian]

I'm the most time trying to forget about this issue. I'm avoiding this forum how much I can, because new members are reminding me what misery I went through at the beginning. I read up new threads from time to time and everytime become depressed.

So.. reading a book about peyronie's?  Hell no! except it would be informational.

[coh]

i have the same opinion as you damian

[RoyHobbs]

I think the idea is to make people outside of our unfortunate circle aware that this thing exists. More awareness could mean more research into methods if treatment or at the very least more informed urologists.

[james1947]

Damian and Coh

The main reason to be on the forum should be to help others
If you will start from this point of view, you will not:

I read up new threads from time to time and everytime become depressed.

James

[emasculated]

@james1947: Yes we can help each other. But the actual medical help is just so limited. Especially for younger guys. So we end up giving tips about how to "cope" with this. Coping, coping... but as a young guy I don't want to spend the rest of my life just coping with something. I want this thing to be solved, healed... Hence writing a book.. I would for one thing definitely not make Peyronies Disease out to be something easy to deal with... just for strategic reasons. But I've already written a PM to Chris about this.

[james1947]

emasculated

Try to be in touch with Dr. Kuehhas.
He is not far from you.

James

[emasculated]

That would not solve anything. And after at most 4 years give me more severe problems than ever for the rest of my life. I've read the long-term studies on surgery (studies from Austria!).

[Knight]

I think the idea is to make people outside of our unfortunate circle aware that this thing exists. More awareness could mean more research into methods if treatment or at the very least more informed urologists.

I agree with this!

Emasculated - Please don't let those "studies" convince you that surgery is not an option. Any study can be jaded to read however the author intends it to be perceived. You have countless real life studies right here on this forum that have nothing but high praise for the way their surgeries turned out. The most common regret I read is that they didn't go ahead with the procedure sooner than they did. I'll take their advice before believing studies I've found on the internet.

My 2 cents.

[emasculated]

Emasculated - Please don't let those "studies" convince you that surgery is not an option. Any study can be jaded to read however the author intends it to be perceived. You have countless real life studies right here on this forum that have nothing but high praise for the way their surgeries turned out. The most common regret I read is that they didn't go ahead with the procedure sooner than they did. I'll take their advice before believing studies I've found on the internet.

My 2 cents.

It's off-topic, but I feel the need to reply. I said "long-term studies" for a reason. What is jaded are the studies usually presented, because they only take into account the short term result of the surgery. Not the long-term effect of the graft material "turning on you" for example. Real life studies are nothing but short-term reports. It matters how these guys, hundreds of them, are in 4 years time.

EDIT: And to make my opinion clear which is actually a well-researched fact, surgery is a huge mistake and a very bad idea no matter what the condition before. Except for older guys who don't care what happens about more than 4 years down the line. And except maybe implant surgery..

[damian]

I think the idea is to make people outside of our unfortunate circle aware that this thing exists. More awareness could mean more research into methods if treatment or at the very least more informed urologists.

And again. No "healthy penis" guy would read a book about crooked penises.

[Knight]

Off topic? It could be good material for the book...

Good luck with your research. I'm very grateful that we have such "brilliant" person (to use your own word to describe yourself in previous post) out there digging up the facts for the rest of us.

Personally, I'm sticking with "the old guys" who have lived it and found a way to get their sex life's back.

[emasculated]

@Knight: Ok.. alright. If you know only one person who had surgery more than 4 years ago, lets say the grafting thing, and does not today have problems with either one of these: bothersome ED, shrinkage, recurrence of Peyronies / curvature, loss of sensation. Then you win and I shut up.

[james1947]

JackP is one of them, Les (LWillisjr) is an other one and if you will make a research on the forum you will find many many more.

James

[RoyHobbs]

Emasculated, what do you suggest to those that have tried non-surgical methods to no avail? What are they to do? I don't understand your intent on this forum. You come across as a very intelligent individual yet you spend so much time writing replies to members that are condescending simply because they have a different opinion. You've said yourself that you will see Dr. Levine for a consult. What is your agenda?

[emasculated]

emasculated, please adhere to the forum rules regarding quotes, the moderators will have less work.
I suggest.. if you don't care that there are few studies on long-term after effects of these surgeries and that the ones that exist (I posted 2) are not favorable at all and if you don't care that there is no sound theoretical basis to believe that these grafts are anywhere near the tissue quality of the original they are supposed to be replacing, then I say go for it. I myself am waiting for innovative _minimally invasive_ approaches or nothing.  

[RoyHobbs]

See that's where you are mistaken. I do care to see these studies. I also care to make up my own mind about them. I welcome any information you are willing to provide. But let us come to our own conclusions. This condition is bad enough without us tearing down one another.

[LWillisjr]

I too would be interested in these studies. I am now going on 6 years since I had my grafting surgery and everything is fine. I am also still in contact with several past forum members who also had this type of surgery and they are also doing fine. Many men once they find a cure don't necessarily stick with or continue to post on the forum. I am not criticizing them as this is there choice. Just as it is my choice to stay on and support this forum and those they seek help.

I can also tell you that most of the men I am still in contact with who are still pleased with their surgeries were patients of Dr. Levine. So I believe that the surgeon doing the surgery has everything to do with the long term success of the outcome.  

[emasculated]

So there are some people where it worked out > 4 years. Having one of the best doctors in the world as surgeon may indeed play a huge role in this. Also the amount of graft material needed / used, the size of calcifications beforehand etc.. I posted the only two long-term studies on surgery I could find in the resource library.. So the data on long-term results is rather thin (which in itself is not an advert for surgery). Sorry if I came across as condescending. When it comes to this I'm just staying on the side of as minimally invasive as possible, tiny incisions. I would never have my penis degloved ever, even if it was unusable for sex. And I stand by that.. but each to his own. And I'm sincerly happy for those where it worked out!

[james1947]

This topic is locked.
Please continue with specific subjects on the adequate boards

James