So it was true, I have peyronies

[race2end]

Very very upset, just diagnosed at doc yesterday with Peyronies. Having read up, it seemed this is what I might have. Pain for a month, most noticeably with an erection and it may have caused some ED too.
Wife crying, for me she says, but wonder for her too, as outcome is not good doc said. I am just in my mid fifties and this for me is the end.
The article on this site is excellent and has much to offer, but in the end i am beyond devastated.
We are married nearly 30 years and very intimate, so this is a bad outcome for what time we have left. On motrin with some kind of anti inflammatory added. No sex for 6 weeks.
I doubt my wife and i will ever be the same. My only purpose now is financial support for the family, like some g-damn robot.
After a hard life of way too many bad things for one person to take, now this, and this could be my undoing. Had to be away from work today due to so much upset, cannot concentrate.
hope i can make it thru this. Anyways, thx for the article.

[Stabler]

Hello race2end

While I know you are upset, lets slow down just a little and start from the beginning. First did you see a urologist that specializes in Peyronies and how were you diagnosed? Next other than pain for a month what other symptoms do you have, did the urologist do an ultrasound or anything. What is the name of the anti inflammatory that you were given (this is important for us to know) Motrin will not be of help in the treatment o f the peyronies. I have sent you a private message with helpful links for this forum please read the message and visit the links that are included.

As for your wife, I would like to offer you my email address so she can contact me personally if she wants to with any questions. Let her know she is welcome to join this forum to read posts from other women who have spouses or partners with peyronies.

Everyone here is very helpful, you are not alone in this, Now that you have found us we will get you through, so use us ask us questions, read the boards.

Here is my email for your wife if she wants to talk, she can ask me anything as can you. Stabler67@Outlook.com

Hugs Stabler67

[race2end]

@Stabler67,
I saw a urologist, that other family had been to. No idea if he specializes in this, but listed allot of illnesses he has experience with, incl. this one.  He asked a few questions on what my issue was, then did a physical exam, finding the hard lump as i had before, he moved it around, and yes it hurt i told him.

He left, came back with my wife and told me i was correct on what i thought it was, Peyronies.

He prescribed (reading the bottle now) 600mg Ibuprofen 3 times a day, to reduce inflammation he told us, also no sex for 6 weeks and see him 3 months. the Appt., was yesterday. I have had the condition about 4 weeks. He was not very encouraging about it going away it seemed, nor gave any options yet.

No scan or utrasound which my wife thought was strange.
Thx for the email, will pass it on to my wife. she has been great but upset i am so upset. I feel like I am now just a shell of course, so ty for the good words.  

[Stabler]

Ok find a new urologist right away. Ibuprofen will do nothing. he should have done an ultrasound and given a script for Pentox. he may have peyronies listed as something he knows but he does not specialize in it and if he did he would not have sent you home with ibuprofen.

The msg I sent you with links to the forum there is a link for urologist that specialize in peyronies, go there now and look for one in your area. 3 months from now on ibuprofen is only going to make the condition worse. Also a peyronies specialist would not have you leaving their office feeling as you do  now.

Stabler67

[race2end]

ty, will do. plz resend message with link to find a specialist.  

[Stabler]

Sent

[nemo]

Don't mean to sound like I'm chastising you for feeling bad, but just based on what I've read, it sounds like you're really overreacting. First of all, we need to know what your symptoms are besides the fact that you have a palpable nodule. Is your erection now distorted (curved, hourglassed/bottlenecked, impaired in some way)? Even if it is, so is virtually every penis attached to a man on this forum, and it's not the end of the world.

As to the doctor you saw, drop him and go to a urologist who has experience with Peyronie's. Many only know what they read in a medical textbook 30 years ago and don't see enough men with Peyronies Disease to bother keeping up with current treatments like Pentox or Xiaflex. Ibuprofen is a waist of time, and indicates your Uro doesn't have a clue - or just doesn't care.

And forget the "no sex for 6 weeks" thing - he's making that up on the fly. Are you capable of having sex? If so, then use that thing. The blood flow can only help - just be careful not to do anything that hurts. If it's painful stop. In nearly every Peyronies Disease case ever reported, the pain eventually goes away. You just have to wait out the active phase and not inflict damage during it. (Gentle sex is not going to inflict damage - rough sex or girl-on-top going off the rails could).

So calm down and get a hold on your rampant worst case scenario thinking. I know it's hard to do, believe me. But realize that most men here continue to have sex, and most NEVER realize their worst fears. I will grant you, some do, but there's about an equal chance that whatever you're dealing with right now won't get any worse. So stop assuming your sole purpose is financial support for your family - you're jumping way too far down the rabbit hole. And you're jumping way too soon. A Peyronie's diagnosis is not a death sentence for your penis or you. The best sex of my life occurred in a relationship I had five years AFTER being diagnosed with Peyronie's. (And some day, I hope to have more!)

Best,
Nemo

[race2end]

@Nemo. ya likley over reacting, but nevertheless, scared as hell, and yes it has affect our sexual relations. That plus little chance I read for it to go away, and yes scared.

No curve to the penis yet, just a slightly painful nodule that is much more when erect, but makes it unpleasant to do the deed. So no curve or indentation, but ED yes. Had Ed for awhile, but even the meds (Cialis) has limited help now. Basically pain and low or less time of an erection.

As for sex, it is possible, with intercourse, but far from workable with the lost erection. Bottomline is pain, a noticeable lump can be felt half way up the shaft on top that was not there before. Some minor pain when flaccid as well, but minimal.

Trying to find a better doc in Las Vegas areas that knows about this. ty

p.s. is an ultrasound needed at this point, and the other med you mention? This doc said he was treating the inflammation first, then we re-evaluate in 3 months

[race2end]

family friend is a radiologist we will call to get ultrasound asap, so i just take it with me to a specialist in town.
Found three possible who know peyronies, but need to do some more digging to be sure.
So getting second opinion and at least from a doc who hopefully is more aware of this ailment.
ty all for you input and support as i begin this process.

[Stabler]

Yes ultrasound of penis should be done. No do not wait 3 months as first Dr said to do

[kuaka]

That much Ibuprophen is not good for very long.  It is pretty much useless with this condition.  "Inflammation" is the least of the issues.  However, you are not without help.  There are many things you can do to mitigate the effects of this condition.  Read around here on the various treatments, and find a URO who knows something about this disorder.  Here on the forum are a couple of areas where specific Dr's are mentioned, along with members' experiences with them.  I also include a link to an external specialist finding site.

https://www.peyroniesforum.net/index.php/board,37.0.html
https://www.peyroniesforum.net/index.php/topic,4063.0.html
http://expertscape.com/ex/penile+induration

kuaka

[nemo]

I would disagree with Stabler a bit in the sense that I don't think you need to be rushing to get an ultrasound done. To what end? To verify that you have a nodule? You know that already. To verify that it's causing you pain on erection? You know that already.

An ultrasound cannot predict the future of that nodule, it can only verify that there is a nodule there. You know that already.

Beyond this, if you're rushing out to get an ultrasound on your own, with no referral, you may find yourself paying a princely sum for it, and again, to what end?  I've had Peyronie's for 14 years, and have never had any sort of imaging done. The only image I'm concerned about is the shape of my penis when erect, and that's easy enough to tell.

Now, if you find a good Uro who's knowledgeable about Peyronies Disease and he/she wants to do some diagnostic imaging, by all means, do it. But as a newly diagnosed Peyronies Disease guy, rushing out in the belief that an Ultrasound is of crucial importance in treating your condition is just an overreaction.  

My advice: slow down, breathe, know that pain almost ALWAYS goes away with time, and if you are not currently experiencing deformity you are ahead of the game and better off than almost everyone on this forum. Could it get worse? Yes. Could it stay the same (plus see the pain disappear with time)? Also YES. Will a costly ultrasound affect either outcome? Absolutely not.

Just my two cents.

Nemo

[james1947]

The reason to make an ultrasound is also to be able to make a followup and see if/how the plaque develops, calcifies or not.
Not just to prove the plaque existence.

James

[Stabler]

Well my first thought (and why I suggest ultrasound usually) is to make sure that it is indeed a plaque and not something more serious. If I am wrong please let me know so I don't continue to suggest this to members.

Stabler67

[Jonbinspain]

Yes, I'd agree with James. Whether calcification is present or not is an important factor when considering the future course of treatment.

In my case, calcification developed quite rapidly. Consequently, it has proved to be resistant to every remedy, including Pentox. I am now on the point of booking surgery with Dr Kuehaas in London.  

[nemo]

Stabler, I don't think an ultrasound is necessary to rule out "something more serious" like penile cancer because: a) the incidence of penile cancer is so low compared to Peyronies Disease, and b) when a guy like race2end presents with the classic symptoms of Peyronies Disease (in his case a lump and pain upon erection), a urologist can fairly conclusively diagnose him without the need for expensive imaging. Penile cancer, for instance, most often presents with exterior skin symptoms like a lump (on the skin as opposed to within the penis) that is discolored, weeps, bleeds, etc. Any board certified Urologist who even saw a hint of cancer would demand further testing, rest assured. Peyronies Disease simply presents with a much more conventional and common set of symptoms.

So if an ultrasound isn't needed to rule out cancer, then does every man with Peyronies Disease need an ultrasound to document lesion size, growth, calcification, etc., as James suggests?  I say no, with the following reasoning. To what end? Peyronie's is a condition that is not, in itself, harmful to the man in the sense that it causes him a health risk. It is a functional condition that limits his ability to have sexual relations. (Believe me, I don't take this lightly). But unless you are so impaired (deformed) that sex is impossible, I don't see the diagnostic or treatment value of having scans made of your plaque. UNLESS, of course, you and your doctor are considering Xiaflex or Verapamil injections, in which case we need to know the exact shape and location of the plaque, as well as whether it is calcified or not.

Unless we're contemplating invasive treatment, your erection will pretty much tell you all you need to know about your Peyronies Disease. For instance, in race2end's case, he doesn't currently show any deformity. So what would an ultrasound offer him other than a picture of what he can feel with his hand, or how much blood flow he's got in and out of the penis. He's nowhere near ready to have Xiaflex injections, so it's not like we need to image an injection site.

I'm not lobbying against ultrasound. If your doctor wants it, do it. But if a doctor doesn't want it, that in and of itself does not mean you're not getting good treatment. Over the years, I've seen about four or five urologists about my Peyronie's, some of them better than others, one at an Ivy League hospital, but not one has ever suggested we needed to do an ultrasound. In the hands of anyone other than a true Peyronies Disease specialist, I don't know what your average Uro would even do with the results other than show you, point out your plaque, and then sing verse two of "let's wait and see how it develops."

Again, just my non-medically trained opinion, based on years of experience with this condition. I say yes, try to get a prescription for Pentox and start fighting this thing chemically. But no, I wouldn't be concerned about getting an ultrasound. To steal from Bob Dylan, you don't need a weatherman to know which way the wind blows. Your penis is a pretty good weathervane!

Best,
Nemo

[KAC]

This discussion interests me because I think I'm seeing the top Peyronie's specialist in my city. He studied under Dr. Lue in SF and was involved in Xiaflex trials... but never wanted to do an ultrasound with me.  It's true I also had to request Pentox, though I also think Pentox was not considered quite the go-to treatment not so long ago. He was happy to prescribe it and I think does so now for others.  I've felt good about his treatment.  He also didn't induce an erection.  I brought photos and those seemed to answer questions or confirm assumptions.  I was actually kind of relieved not to do an ultrasound.  But I'd be interested to know if other people believe this is really important.

[Jonbinspain]

To be clear, I went to my appointment with Dr Kuehaas as I had exhausted all other known remedies for fighting this disease, with little or no improvement. I was considering Xiaflex (pex) injections.

Dr Kuehaas recommended an ultrascan to determine the extent of the plaque and to check the level of calcification ( which I had already had confirmed here in Spain ). His opinion was that whilst Xiaflex MAY produce an up to 30% reduction in curvature, there are no guarantees of that. The cost of the four courses of treatment would fall not far short of the cost of surgery, also.

I elected for the surgery, using the Egydio technique. This apparently has a more than 90% success rate with no reappearance of curvature. He assured me that my penis would be completely straight again after recovery.

I got the distinct impression from talking to him that he doesn't believe Pentox to be of much use once the disease has passed the acute stage. And from my personal experience of taking it for over 2 yrs with no positive results, I'd have to agree.

In conclusion, I feel that if you are sure that the disease is not past the acute stage, then an ultrascan is not necessary. However, if you're not sure, or as Nemo says, you're considering injections or surgery, then yes it is necessary.  

[Frank55]

Jon,

Did your Doctor think Pentox had value during the acute stage? I think I'm in that stage now and I'm using it.

Thanks,
Frank

[Jonbinspain]

Yes, he prescribes it himself during the acute phase. His view is that once the chronic stage has developed it won't be of much use.

I would stress that this is his opinion only and that others may disagree. It should also be noted that he is a surgeon first and foremost.

I can only speak from personal experience, and my experience has been that although I have improved penile health significantly, the scarring and the curvature still remain. Hence my election for surgery as my last resort.  

[race2end]

Hey all, 'race2end' here who posted this initially. Want to thank everyone for info and support as I take all this in.
Update: just got second opinion from specialist in Peyronies here in LV. He was much more forthcoming and seemingly knowledgable.
On Pentox now, as I am in very early acute phase now. He did the exam, but no scan, as  he said as it clearly was Peyronies. I hoped the first doc had it wrong of course, but no.
So now on the Pentox, and see him again in 6months once it has progressed t cronic phase with any physical change seen (none seen yet). Not until it gets to chronic phase can he recommend next steps, which he went over what they might be.

For now its: Pentox and he suggested a penile 'traction' device to stretch and help with the tissue, called a 'peyronies disease extender'. It is adjustable and supposedly can perhaps minimze the effects long term. He said to start now even at this early phase.
At 300 bucks want to be sure this is not a waste. Anyone have any experience with this type of device??

[Stabler]

Race to end,

this is great news that you have found a knowledgable uro, Pentox is a good start, please visit the oral meds board to discuss with members about supplements that can/should be taken with the pentox.

Again great news keep us updated

Stabler67

[james1947]

race2end

Until you will get an answer invest some time and read the link bellow:
Traction and Traction Devices for correcting Peyronies Disease - PDS - Peyronies Society Forums
You may find there other devices, much cheaper, and also a home made one by kuaka

James

[QuackAttack]

Race,

It is good to hear that a URO is actually advising this as a first step rather than saying wait and see, then cut you open.  I got a SG traction device within the first 6 weeks of noticing my curvature and have been wearing mine for approximately a month now.  It takes a little while to adjust to, but I think I have noticed a change of 5-10 degrees within the past week as my traction time and tension have increased. I have found that good solid fitting boxer briefs are the best for concealing it and if you wear pleated pants, you are in good shape. This is not a time for tight jeans. For comfort, I suggest finding some neoprene and creating something to wrap the silicone tube or your member. Also, at first you will get frustrated with hairs getting caught and may be tempted to shave, don't to this as it will eliminate padding against your pubic bone and the base of the unit will rub you wrong.

Good luck, also, don't rely on just one thing. Throw everything you can at it. Look at supplements like L-carnitine, Blockbuster All Clear, Magnesium, etc. but make sure there are no interactions with your prescription med.

[race2end]

Update: Next appointment with doc in April. In meantime on 400mgx2 a day Pentox, 600mg Ibuprofen as needed, and yes tried traction (USPhysiomed device). After 5 days of being careful and w/o extensions, I may have further injured myself, so stopped any traction for now.  
No noticeable physical changes yet, but pain as expected when erect.
Seeing Psychologist with wife as we deal with this. Thanks all for the info and support.

[kuaka]

Recently, I have discovered Magnesium supplementation.  Mag Citrate or Mag Chloride are the best two.  Mag deficiency is common with most fibrosis conditions, which PDS is.  Consider cautious VED as opposed to traction as well, as expanding the Tunica as much as possible without adding injury is a good thing at ANY stage of this dreaded affliction.

[LWillisjr]

This topic is now locked as an introductory topic