Hi everyone

[Jigsaw]

I visited my GP last week and was given a referral to a urologist, so I am just starting out on my journey with Monsieur Peyronie.

Fifteen years ago, I was diagnosed with plantar fibromatosis - hard lumps on the soles of my feet. "That's unusual," said the specialist, "to have it on both feet. Besides which, it usually appears on the hands first."

Not wanting to disappoint, I went back about four years ago with Dupuytren's contracture.

And then about 3 weeks ago, I noticed a bend in my penis. Not painful, but that's probably because the bend is preventing a full erection. So understandably I'm a little curious about how many more parts of my body can be destroyed by fibrous plaques...

I have been through very mixed feelings - depression at first, especially when I found that there is no real cure. But also a strange feeling of liberation - if that thing won't do what it is supposed to do, then I'm no longer obliged to listen to its dictates. Most of the time I gravitate from one extreme to the other in a state of confusion and insecurity about the prognosis. Let's see what the urologist says.

My screen name was chosen from the lyrics of the song "Bend It", by Dave Dee, Dozy, Beaky, Mick and Tich - a UK pop band from the 1960s, which really gives my age away. The lyrics suggest that a modest bend may allow the protagonist to fit together with his amour like pieces of a jigsaw puzzle. I really did want to find a positive slant to all this....

At least my wife laughed when I told her that I can't get it up any more, but hey, I can get it round corners. Or maybe it wasn't so good to laugh.

Looking forward to meeting you all on the forum and sharing the journey with you.

[Luciano]

Welcome Aboard!
Even though its not a happy occasion.
First of all you should go through the forums, and get information how people here cope with the disease.
Also some forms of treatment, so you can at leas make the progression slower.
I am talking about Pentox, Pav coctail, supplements and maybe Ved or traction.

We all here are not doctors and we have our knowledge from trial and error.
See if your urologist will prescribe you pentox. as it is the treatment that gave best results in the domain of halting the progression of the disease.
Also there is hope, with the forthcoming approval of xiaflex for treament. there are a few topics on the subject.
See for your self, the boards are self-explanatory.

Luc

[james1947]

Jigsaw

Always good to have a sens of humor but with Peyronies even more.
I will just add to Luciano post that treating the disease earliest as possible have the biggest chances to stop and reverse the symptoms.
To give you an advice (again, we are not doctors as Luciano said) we will need some more information like how much is the bend, if you have also ED problems etc'.
Let us know what the uro say.

James

[reynell]

Jigsaw

WELCOME

I agree with all said even though no one here is Dr's there IS men on here that are specialists in certain areas of trial and Dr error.  I know i have learned more on this site than most of the previous Dr's i have seen.  My GP was honest and said you need a specialist and that he knew very little about the topic.  I always say some times (Dr's included) cant see the forrest from the trees. The Dr's are only human too.

You have all the moral and mental support right here!

good luck
Rey

[Jigsaw]

Thanks for the welcome, everyone.

Reynell - good luck with the surgery, and don't forget to let us know how it goes.

In answer to James and also for my own records:

I have a history of depression, and in 2007 I was prescribed dosulepin (this is a tricyclic, as the newer SSRIs and NSRIs have triggered hypermania in me in the past). One side-effect of the antidepressant this time was a loss of erection which didn't go back to normal when I came off the medication.

In 2008 my GP started prescribing Viagra to "kick-start" the system. Her theory was that my bits just hadn't been used for a long time and that the viagra would only be temporary.

Four years later (2012) I'm still relying on viagra to get an erection.

I still get the occasional morning erection, but they are few and far between and don't last long enough to do anything with. Around 17/18 May, I had a morning erection with a bend of around 20-30 degrees. I thought it was unusual, but probably temporary, so didn't dwell on it.

About a week later, the same thing happened so I did some research on the internet, found this site, made an appointment with my GP and got the referral to the urologist.

Since then, morning erections have paradoxically become more common. The bend depends on the strength of the erection, and the worst it has been is about 40-45 degrees. I've read that the disease affects the penis' ability to contain blood - it leaks out as fast as it is pumped in - so perhaps that's why I haven't got to the full 90 degrees.

[james1947]

Jigsaw

To know for sure that is Peyronies you should see a doctor and make an ultrasound.
Your ED may be long time already, but I think your Peyronies is new. In my opinion you should begin treating your Peyronies as soon as possible because in the acute phase you are in now the chances to stop the progression and to reverse the disease is much better than later.

In my opinion such treatment will include:
Pentox 400mg 2 or 3 per day
L-Arginine 1000mg daily
Ubiquinol 100mg 2 or 3 per day
Low dose Cialis (4 or 5mg daily, you can cut the 20mg in 4 or 5 pcs) or Viagra (17mg approximately, cut the 100mg in 6 pcs)
In addition start with VED, it will keep good blood flow to your penis and will help straiten your penis also.
For intercourse use the Viagra in the dosage you are using now.

This is the treatment I am doing today, based on what I have learned on the forum

James

[Jigsaw]

James, thanks, I am seeing a urologist next week (he is on holiday this week - why do consultants always seem to be on holiday???   ) Whether he gives an ultrasound or not I will have to wait and see, but I can't see what else it is - if it appeared suddenly, it can't be a congenital curvature.

Your treatment pattern seems to be consistent with what most people on here recommend. Yet having read Tom Lue's research, I'm not convinced Pentox is our salvation. It may be the best of a bad lot, but that doesn't make it the miracle cure by a long chalk.

But I appreciate that catching the disease in the early stages should result in a better outcome than leaving it for years because maybe I thought there was no hope. So I still have my hopes up in spite of my history of depression!   I'm also buoyed up by the fact that neither my plantar fibromatosis or Dupuytren's contracture seem to have got worse (touch wood).

And for the record, I haven't taken antidepressants for five years now. I learned to meditate, and found that that was a successful way to control my emotional rollercoaster ride. If anyone is interested I'm happy to divulge more.

Also for the record, the meds I am on now are:

For hayfever/allergic rhinitis - fexofenadine 180 mg 1 /day
For sciatic pain resulting from a slipped disc - cocodamol 30/500 mg as required (currently 2 /day)

[james1947]

Hmmm. My uro was also away when I needed him urgently but he was not in holiday.
He attended a learning conference in Atlanta regarding Peyronies with the best world known Peyronies specialists.

Regarding Pentox, when my uro prescribed me for the first time he had done it after I have explained him what I have read and learned on the forum.
When back from the conference, he told me that today Pentox is considered a first line treatment for Peyronies.

It is true Pentox is not helping everyone (as all the other treatments are not helping everyone) because of the Peyronies nature that each case is a specific case. In addition, improvement from Pentox should not be expected before six months of usage, is a marathon, not a sprint. By the way, have people reports on Pentox helping after shorter period also.

Good to hear that meditation is helping you to control your emotions.
What helps me for my slipped discs, 3 down, 3 on my neck is a professional massage. Some people that I know are using a chiropractor for the same pain.

James