Open Questions on Peyronies Disease (That won't fit under any of our current topics)

Previous topic - Next topic

0 Members and 5 Guests are viewing this topic.

didi20031

newguy
I will keep you informed!

Hawk
You are absolutely right. I am not yet through the whole book, but what I have read up to now sounds reasonable to me. The tightened muscles may be the "connection" between some of my symptoms and my psychological status. That could be the reason why some of my problems improved after having the diagnosis...

alcohen
Do you know the book "A headache in the pelvis"? Have you ever considered pelvic pain to cause some of your problems? According to the book it can be a reason for a great range of different kinds of pain (penis, testicles, perineum, anus, lower back, groin), insensitivity, lack of libido and also for severe ED.

all the best
Didi

couldbeworse

I read "headache in the pelvis" a few years ago.  All I remember is that they make the counter intuitive claim that you can reduce pain by learning to contract perineum.  The contraction teaches you to control the tension in pelvis so you can eliminate it.  I clinch perineum in my yoga practice and i no longer experience pain- but it hasn't changed the shape of my wanker.

didi20031


greenplastic

Hello All,
I am a 21 year college student and I got peyronies disease about 2 years ago a few months after injuring my penis while masturbating.  I noticed a bump on the right side of my penis and I ended up with around a 20 degree curvature.  It is now stable.  However, I am still experiencing pain that I think is related to my initial injury.  It is typically at the bottom or side of the shaft and it usually happens when it is flacid.  Sometimes the pain is more of a itchy/tingling sensation which goes away after I rub it.  Anyway, I'm concerned that this pain is going to cause another episode.  Right now I am taking Vitamin E and IB Profen daily.  Should I consider ALC?  Does anyone have any other suggestions?


Tim468

Welcome Greenplastic,

It seems to me that we all experience this in different ways. It may be that we are describing a different feeling stemming from the same stimulus. For me, when things get active, I feel an aching sensation in my penis that does not hurt, but I have instinctively reacted to by trying to tug it longer (I think I developed a theory years ago that since the injury was due to "transformed myofibroblasts", that the same smooth muscle that shrinks you when you are cold was active when I was getting worse - so the natural remedy seemed to be stretching. Oddly, though the mechanisms and biochemistry are off, that may have turned out to be right.)

At any rate, pay attention to your body and try to do some stretching out when you are active - but NOT TOO MUCH. Hard masturbation or sex can make it worse at that time, whereas easy sex (or better yet, IMHO, the VED) can keep things limber and stretched out, minimizing contraction. Just my two cents worth. The key is to not either work an actively inflamed penis too hard, or to ignore the need for regular erections and let the contraction progress.

Tim

ps the supps sound good. I add vitamin C slow release and vitamin D3 too when inflamed.
52, Peyronies Disease for 30 years, upward curve and some new lesions.

dem4206

Hi, I'm meeting with doctor Rei Chiou in Omaha, Nebraska to possibly have a vein graft done and I will be having a penile dynamic colour-duplex Doppler ultrasound done. Can anyone tell me how it is done, what I will have to do, who does it, what will happen, how long it takes? I'm afraid it will be like having an x-ray or mri where they send you off to have a couple of 20 something girls do it that are giggling and chewing bubble gum while barking out orders at you.  

dem4206

Sorry I wasent specific, I was asking about the ultrasound procedure. I already know how the vein graft works. I appriciate any feedback, thanks Dan.

jackp

Dem4206
When I had my color doppler in 2004. It was discrite and in the doctors office.
The female tech came in the room and was always looking at the monitor facing the wall at my head. She never looked in the direction of my penis. Except during the exam I was under a paper sheet.
Doctor did the doppler first flaccid and injected a small amount of PGE1. (No it did not hurt barley felt it.) Then repeated the procedure.
Yes I had venous leakage and tried shots for ED. Big Mistake!! Shots for ED caused corporal fibrosis and made things worse.
Not a pleasant procedure but I have had worse.
Jackp



Iceman

TIM468 or anyone...

I just had an endoscopy and was found to have a hiatias hernia  - could this be a result from the billion supps I take a day to combat Peyronies Disease - such as  ALC, pentox l arginine, vit e and d etc etc etc...If this is a cause what would be a good solution?

George999

Quote from: Wikipedia Risk factors

The following are risk factors for having a hiatus hernia.

   * Increased pressure within the abdomen caused by:
         o Heavy lifting or frequent bending over
         o Frequent or hard coughing
         o Hard sneezing
         o Pregnancy and delivery
         o Violent vomiting
         o Straining with constipation
         o Obesity (extra weight pushes down on the abdomen increasing the pressure)
         o Use of the sitting position for defecation[1] (See epidemiology below)

   * Heredity
   * Smoking
   * Drug use, such as cocaine.[citation needed]
   * Stress



Iceman

I am going to try magnetic therapy - i bought some little dot like magnets x 40 on adhesive patches  - lets see how we go - so far its been a bit uncomfortable with them on me whilst sitting at work...

anyone had experience with this therapy

gerald

Has anyone besides me come down with Peyronie's after taking Metoprolol (Beta Blocker)?  I had no symtoms prior to the medication.  I then had a bypass and left the hospital with full-blown Peyronies.

Gerald - ghinin@verizon.net

Old Man

gerald:

See my reply on the Oral thread. BTW, you do not need to post the same on different threads.

Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

jon

so here's a question, but first some history on me:
30yo white male, T1DM (type 1 diabetic) of 18years, peyronie's for 8 and dupuytren's for 2.

Have any of you had an issue with dry orgasms or retrograde ejaculation since developing peyronie's?  

seaside2

Jon,

A little older (By almost 50 years!!!) also T1 diabetes. Have some of the same issues and initially attributed it to the use of Flomax (Urinary flow enhancement). Flomax has a side effect of reduced ejaculate. Got off Flomax via the VED (Great side effect, BTW). Still have the same symptoms, though not as severe.

Old age? Diabetes? Peyronies? Who knows? I can't definitvely blame it on Peyronies Disease, but.........

Mick

I am positive that Flomax caused retroejaculation in me.

Old Man

Note:

Flomax can and will present varying and some wild side effects. My uro has just about quit RXing it for her patients because of them. Since it is designed to help with urine flow, it has as well a tendency in some men to reduce the size of the tubes connecting all the reproductive glands into the prostate gland. This causes the seminal fluid to become compressed in the gland and during ejaculation reverses into the bladder instead.

Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

jon

Well.. no flomax for me. The only things I'm on right now is traction 8-12hrs a day, 400mg pentox 3x, 1g ALC 3x, 1g l-arginine 3x, 5mg cialis 1x, a multivitamin and a b-complex supplement.
It kinda sucks. I mean the lack of cleanup is ok, and the lowered risk of pregnancy is a definite bonus (wearing a rubber anyway), but, pardon the euphemism, the girl I'm seeing particularly enjoys being, um, frosted :D..

meh.. looks like another uro appointment for me.

Hawk

Quote from: jon on October 30, 2008, 12:00:57 PM
Have any of you had an issue with dry orgasms or retrograde ejaculation since developing peyronie's?

Jon,

An enlarged prostate can by itself cause retrograde ejaculation.  Peyronies Disease could not cause this to my knowledge because by the time ejaculation get to the penis (where Peyronies Disease is), it has gone far beyond the "intersection" where retrograde ejaculation makes the wrong turn.

A good illustration of the prostate and bladder make this easier to understand.

Good luck
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

jon

Well, I called my uro today, and he suggested taking 50mg of ephedrine daily, or 120mg of pseudoephedrine 2-3x daily. something about it closing the bladder neck, thereby preventing retrograde ejaculation. Guess I'll give that a go.

newguy

Quote from: jon on October 31, 2008, 09:39:27 PM
Well, I called my uro today, and he suggested taking 50mg of ephedrine daily, or 120mg of pseudoephedrine 2-3x daily. something about it closing the bladder neck, thereby preventing retrograde ejaculation. Guess I'll give that a go.

I was under the impression that ephedrine can decrease circulation to some parts of the body. It seems strange that a uro would suggest it to someone suffering from peyronies.  

Old Man

newguy:

Some uros/mds prescribe it to relieve prolonged erections as a result of the "pills", injections and other erectile meds. So I agree with you that must be something we are missing here, huh?

Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

newguy

Quote from: Old Man on November 01, 2008, 11:00:55 PM
I agree with you that must be something we are missing here, huh?

Yes, from what I have heard the results are a little like how the body reacts to a fight or flight situation. The heart rate increases and blood flow is reduced from all but essential organs. Some people take it as a recreational drug. There are many, many people in bodybuilding taking ephedrine as part of a body fat reducing routine too. Many of these guys report a tempoary shirnking of the penis, due to the reduction in blood flow. I dread to think of the potential consequences for someone suffering from peyronies, when much of what do revolves around improving circulation and stretching/remoulding as oppose to shrinking.



Bobby Magee

Hi Guys, (gals, I guess) I,m 11 mths since 1st symptons, and experience about 20 lb weight loss, cant find answers, is this a factor ?????, i,ve been off site,  BUT IM BACK,  to get more active,  GAME TIME,  has anyone else had exp...Bobby Magee

Post moved from the "Awareness and Advocacy" board

Hawk

BobbyMcGee,

There in no established connection between Peyronies Disease and weight loss and none of the thousands I have read on any forum have ever reported an association.  

Time to see your doctor!
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Tim468

Weight loss, when not the effect of efforts, or an expected outcome of activity (ie started a new job as a back-country ranger), is cause for a visit to a doctor to be sure that nothing is going wrong with your body. The top reason may be depression leading to decreased eating, but wouldn't it be nice to know that you didn't have cancer?

Get your butt in gear and let us all know that you are OK!

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

lance

You guys seem quite knowledgeable.  I know you're not a physician, so I'm asking for your opinion/thoughts on this...

A year ago, my penis ruptured.  Not like a "popping" sound fracture, but more like several "tears."  The tears led to cord-like plaques that run horizontal.  Fortunately, it led to no curvature or other severe deformities.  I just have the visible cord-like plaques.  

Several months ago, the plaques started becoming more prominent.  In other words, they stick out more.  Also, I can now feel the plaques IN MY PENIS, which I couldn't before.  When I say "feel", I mean I can sense where the plaques are located (not saying "feel" such as with my hand).  When I get an erection, I can still achieve maximum size with no curvature, but my penis feels "sore."  My belief is that for whatever reason, when my girlfriend and I were having sex, the skin became more stretched and probably led to more "tearing."  

In summary, the cord-like plaques have definitely gotten bigger.  My penis feels sore.  Sometimes the plaques have a minor burning sensation.  But it's over a year since the first trauma/injury, and I have no curvature or E.D. symptoms.  I'm presently taking Arginine and Pentox.

Finally, here's my dilemma...

Through all of this, I'm fortunate to have no extreme deformities.  But I've reached a crossroads.  Here's where I request your advice/consideration.  Is it better to STOP having sex so that the tears can heal?  Or is it better to maintain having sex, so that no inelastic scar tissue forms?  What is the school of thought on this?  Should I allow for morning erections to provide all the stretching that I need, or should I continue to have sex?  Is there great harm doing nothing and letting the tears heal on their own?

Any advice from anyone is greatly appreciated.

Tim468

I would take a 30 day break from sex and use the VED. Then, see if gentle intercourse (no acrobatics) is OK. The VED will keep the stretch going.

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

whygodwhy

I have a 10-15 degree curve to the left.  The thing that bothers me the most is the way my penis frequently looks while it is flacid or getting hard.  It doesn't just hang left - there is a hourglass effect.  It narrows in the middle with a dent on each side - but as it gets fully hard this goes away.  This doesn't happen all the time though (sometimes it inflates normally w/ no hourglass effect), How can i stop this from happening??  ???  Why does it only happen sometimes?
Is it temperature related?  Related to how recently I had an orgasm?  Diet?

Is there a pill or drug or anything I can take???  Im overwhelmed with the amount of options out there.  I own a VED (although I no longer use it) and have tried verapamil cream - I just want it to inflate better

I should probably mention that I take Zoloft daily and also smoke a pack of cigs a day.  This might have something to do with it

Sometimes It just bends left while flacid/getting hard and this is the way I want it to be all the time.  What can I do?

Hawk

Your concern and your approach both leave me puzzled.

Exactly why does the shape of your penis in the brief transition from flaccid to erect bother you so much (or at all), especially since it only happens on occasion?

My next question is why would you smoke if you are truly concerned with your health.  I am sure you do not think some pill can compensate for general bad health habits.

The post seems to illustrate the contradiction of; on the one hand being overly concerned, and on the other hand not at all concerned.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Old Man

WGW:  

Sounds to me like you should resume use of your VED. Get back on the 26 week therapy for the three cylinder VEDs, if you have that one, or use one of the single cylinder protocols if you have only a one cylinder VED.

I firmly believe you will see good results from VED usage. At least, you will provide more blood flow into and out of the corpora which promote better penile health. Check out the VED topic/thread and you will see many guys have gotten good results. Very few have reported no change at all.

Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

George999

I think both Hawk and Old Man have provided you with some good insight here.  I would pay attention to their advice.  If you are taking Zoloft, I would also advise that you have your vitamin D levels tested and make sure they are optimal at 50ng/ml.  Low vitamin D levels could be exacerbating both problems.  - George

Bobby Magee

Thanks to Tim 468, + Hawk, Im slow to the Tech., World so my post, you guys read was orig., On Aware. and Advocacy.,.now I,ll use this, Open Quest., site, Tomorrow I,m sched. to see Dr. Ungaro, at Mass Gen. it took me 3 mths, to get this appt. I saw a Urog., in Haverhill $ mths ago. and he told me I was in early stages and see him in 6 mths.,At that time my penis was at 45 % 1/2 way from beg. to end,. Now it is almost  90%, upward, I,m having occasional sex with a friend,. she is more than delighted at my present condition,. So I have mixed emotions, I think you guys can relate on that, I,m 61 yrs,old and in great condition, Besides my weight loss, My friend reminded, Last june, july, and August, I worked my but off, restoring a Home in N.H., now for 2 mths Im involved in movig Antq, furniture, from house to truck, truck to Auction, she says I this is prob. reason for the loss, and shes poss., right, but my mind tells me diff., and i,m working on not letting my head, run with this,.anyway I,m a fighter and former Footballer so like I said before GAME ON, Thank you two for the advice, Its a real boost, ps. I was following the prog. on the Urolgist from BU, and your Awareness future, prog., when you know what direct., you,re going., I live in Amesbury, mass.  count me in on doing some legwork, Bobby Magee

Hawk

Bobby,

I moved your post because this is the board for discussion on Peyronies Disease treatment and issues.  On this board are several topics.  Post under the topic that deals with what you are discussing in any particular post.

Do I understand you to say your friend is happy with your 90 degree bend?  If so, could you explain that.

I had some effort reading your post because you abbreviate many words.  This makes it difficult for all readers and especially those that are not native English speakers.  I know it takes more time but please go easy on the abbreviations.

Hawk
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Davey

My penis curves downward like a banana.  I know I did this to myself as a kid masturbating by humping my bed. At the time I had no clue what I was doing or doing to myself & not a day goes by that I don't wish I could go back and change that because of the dramatic effect it has had on my life. I have never seen a doctor about my problem because I have always been so ashamed. I have also never had sex or any sexual contact for the same reason, & have turned down one night stands & relationships from attractive women who threw themselves at me.

I want to make changes in my life but am still scared of the embarrassment & rejection. Biggest fear is a girl that might tell my friends etc.  Any advice on you guys could give me about what to expect if I saw a doctor or if he could even do anything to help me. Is there any treatments for my situation. Everything I read seems to say no as long as you can still get an erection, which is half the reason I can't bring myself to go to a doctor. I can but the shape is very deformed.  Also I recently started dating this girl, she was to amazing not to pursue. It hasn't got sexual, but how do you guys prepare a new partner for something like that. Is it something you are upfront with them about your issues & prepare them for what they will see before it does go sexual, just so there is not shock value?  I don't even think i could do a missionary position because of my angle. Anyone have similar problems & advice about what position I should try?  Thanks for your help.  

joe

Davey, if it has curved down since you were young, are you sure it is Peyronie's and not congenital?  You didn't mention if it was ever straight so I wanted to clarify.  I had a slight downward curve before Peyronie's but now it is definitely up.  I worry about my curve all the time, but I have seen porn videos where the guys curve is worse than my own.  So I remind myself of that and that girls don't care much at all - heck they might love that you can hit a spot no one else can (assuming you can penetrate).  I would mention it to the girl and I bet that if she likes you she'll be supportive.

I would definitely see a urologist, but make sure you go to one who specializes or at least keeps up with the latest research in Peyronie's.  I figured all uro's were the same but mine prescribed me Potaba - it seemed to slow the progression but didn't make it any better.  If you read the boards here you will see that Pentox is a popular treatment but only some uro's will prescribe it.  Many here have straightened there curve out enough to be happy with the VED so you might want to read those posts also.

QuoteEverything I read seems to say no as long as you can still get an erection, which is half the reason I can't bring myself to go to a doctor.

I don't think this is true - I believe if you can't penetrate due to the shape then surgery is an option once all else fails.

LWillisjr

Davey!
If you can still get an erection that is half the battle. I'm not sure how you got the impression that is you can get an erection then there is nothing else you can do. And many of the therapies apply whether your curve is from Peyronies Disease or congenital. If it is due to Peyronies then some drug therapy may help as well.

For sure you can try either traction or VED therapy. There is lots of information on this forum. But my best advice is to try to get into a relationship and not to worry about size, shape, curvature, etc. Unless your curvature is severe you might be surprise at how easy intercourse can be. I had a sharp 70 degree upward bend, and was able to have intercourse but it was starting to get uncomfortable for the wife. For you a "doggy" or "spoon" position might be ideal.

Bottom line is don't guess and beat yourself up. You might find what you have works well.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

Davey

Quote from: joe on January 13, 2009, 07:10:25 PM
Davey, if it has curved down since you were young, are you sure it is Peyronie's and not congenital?  You didn't mention if it was ever straight so I wanted to clarify.  
No, once upon a time it was your standard issue perfectly healthy one, when I was about 11 years old or so. Growing up in a religious home I was always taught masturbating was bad, so somehow in my mind at that age came up with that dry humping stuff wasn't really masturbating. Pretty messed up I know, but all I knew was it felt good at the time even if it was uncomfortable as well. So technically this isn't what I understand Peyronie's to be, but unfortunately I have a lot of the same curvature issues from the trama I caused on myself & had no clue where to seek such advice other than this forum. So thank you guys for your help.
Quote from: joe on January 13, 2009, 07:10:25 PM
I worry about my curve all the time, but I have seen porn videos where the guys curve is worse than my own.  So I remind myself of that and that girls don't care much at all - heck they might love that you can hit a spot no one else can (assuming you can penetrate).
Yeah I have seen some of those guys as well. They do give me hope. Then again they are hung like horses.

Quote from: lwillisjr on January 13, 2009, 10:00:23 PM
Davey!
If you can still get an erection that is half the battle. I'm not sure how you got the impression that is you can get an erection then there is nothing else you can do. And many of the therapies apply whether your curve is from Peyronie's Disease or congenital. If it is due to Peyronie's then some drug therapy may help as well.

For sure you can try either traction or VED therapy. There is lots of information on this forum.
Thanks, this gives me some hope.


Quote from: lwillisjr on January 13, 2009, 10:00:23 PM
Unless your curvature is severe you might be surprise at how easy intercourse can be. I had a sharp 70 degree upward bend, and was able to have intercourse but it was starting to get uncomfortable for the wife. For you a "doggy" or "spoon" position might be ideal.

Bottom line is don't guess and beat yourself up. You might find what you have works well.
We'll over the years I have gotten depressed about this, & it's hard to swallow having done it to yourself, but at this point I know it was just a dumb mistake as a kid I made, so it's hard to get beat myself up to much at the same time. It's just taking that next step & trying, I think I am at least progressing there. Until 2 days ago I had never told even went as far as ask for help on a message board much less tell or show another person.

I think I will bite the bullet & seek some medical advice.  Should I just look up a urologist, or how would I go about seeking one that would be familiar with these procedures?    

gregvebe

hi everybody
am a newbie here
33 y old, diagnosed with the disease since june 2008
hourglass deformity at the base ( hurts) en a big plaque just under the gland about 2 cm, bending my penis 30 degrees to the right


worstened after 9 injections of verapamil
take vit E orally

any other tips?, cannot estimate the degree of my problem since i havn't seen others to compare

should i avoid activity to prevent making it worse or not?

thx for all your help

jackp

gregvebe
Welcome to this forum. You have come to the right place for information and help. I found this forum 10/07 and it has been a LOT of help to me.
First let me get my rant against sticking needles in your penis. I used trimix and PGE1 injections for about a year for ED. Little to no help. The injections made my corporal fibrosis worse and caused a failed implant attempt 10/07. I had to find a specialist in implants and go 200 miles to get it done successfully.
The best advice I can give you is go to the VED section and get the VED that Old Man recommends. The VED exercise help keep your penis healthy and hopefully prevent size loss to to peyronies.

IMHO do not stop sexual activity. Sex is the one thing that keeps the penis and prostate healthy.

Lots of Luck. Old Man will give you lots of good advice on VED usage.
Jackp

Hawk

Davey,

I am very suspicious that you do not have Peyronies Disease and that you did not do this to yourself.  Even if you did, I guess 90 % of us could say that either because we zigged when she zagged, or we injected something for ED, or we used poor nutrition, or we did not figure out the right therapy soon enough.

The penis does not really start to develop into what it will be until puberty when we develop secondary sexual characteristics.  Almost all boys masturbate in frequent and diverse ways.  Because you masturbated (A) and because your forming penis in puberty got a curve (B) does not mean one caused the other.  However, what if it did?  You could as easily been hit by a soccer ball or kicked by a horse doing some other "boy stuff".  This is where you are now.

Get a medical assessment.  Do not waste time on a doctor that has no expertise.  Ask if they have any background with Peyronies Disease or congenital curve.  Ask in a matter of fact way.  If it was an embarrassing topic to them they would not be urologists.  You cannot decide to deal with peoples urinary system every work day of your life and then consider it strange that the people you see talk about their genital area or bodily functions.

Good luck

Hawk
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Fredca

Hello, I have read that remaining sexually active is assumed to be a good thing several times.

Because I have no partner; I can pretty much only masturbate- this is something else than just sex.
I have always thought it could cause damage, but because my age of 29 I couldnt help that I had to do it often.
Often being 2-3 times a week. But I thought the remaining sexually active thing might weigh up against it.

Anyway,

Since last week I notice loss of the interest in doing it. Its not that any pain or discomfort is the reason, this didnt stop me before as well. Then again, since 2 weeks my penis has become extra painful.
So I am not doing it at the moment and think of waiting with doing it till I feel the need again.
Would that be wise?

While it may be good to prevent any form of further trauma that may be caused, if that even has anything to do with my increased peyronies in the first place which I kinda doubt but still; I wonder what the impact could be of this on my system. Its definitely not normal.

To be honest it also worries me to not feel the need to ejaculate. It is not normal.
I hope it is just a psychological thing and I may be recovering from this.

But if it is not, then what is it? Can the peyronies ever trigger something like this? Is my sexual function taking a break by itself to give time to fix the issue? Should I be worried? Or should I be less worried and is it just the mind influencing the body?  

didi20031

fredca,

I am not an expert and I don't know if what I think is supported by those who have much more experience with the disease than I do. However, in my opinion your body just knows what is good for you and what is not. At the moment maybe a break would be the best for you. I was in a very similar situation. I am 34 and into this mess since July 2008, so for six months. For a few weeks I felt quite a lot of pain and no need at all to masturbate or to have sex with my partner. I even had a quite severe ED problem in that period. I tried to masturbate every now and then and after ejaculation (which often occurred in nearly flaccid state due to ED) the pain used to get much worse. At the end of November pain started to get better and I think it was because I masturbated or had sex only about once a week. Now I am nearly free of pain. I masturbate or have sex 2-3 times a week and it feels quite good. I can get firm erections now (even if the glans is still softer than it was before the onset of peyronie's) and I do feel the need to ejaculate (not yet as often than before, but I have the impression that it is still improving).

So, if you have pain and don't want to ejaculate, maybe it is because your body wants to tell you that it needs a break. I don't know if the risk to have corporal fibrosis increases drastically if you reduce your sexual activity a little bit for a while. In my case I had the impression that masturbation / sex had a negative influence on my peyronie's for the period of about three months.

All the best,
didi

gregvebe

thx to all here
it is great to know I am not alone
nobody talks about it
i am glad to know I am not the only young chap here with this evil disease and that we all feel and experience quite the same
does anybody knows a site with decent pictures of the disease
since i never saw one , except mine, i cannot rate my condition as good bad or bad bad

take care and thanks for your great support

greg

didi20031

greg

there is a german website with a few photos:

http://www.induratio.com/page.php?12

the password for the site is "induratio"

the first photos show a plaque which has been removed surgically.
then:
- 1 photo of a patient in stable phase (before surgery)
- 4 photos that show one patient january 07 / july 07 / october 07 / january 08
- different web pics

didi

LWillisjr

Make sure you click the submit button. Entering the password and just hitting enter won't do it.

Also there is a "classic" picture of Peyronies Disease on Wikipedia.
http://en.wikipedia.org/wiki/Peyronie%27s_disease
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

Old Man

greg:

There are several web sites around the world that have many penis pictures. Check out this site:

www.ejacu.com

It has pictures of penises in all sizes, shapes and configurations.

Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

default87

Hello everyone, I'm new to this forum and I'm pretty sure I have corporal fibrosis as a result of taking Propecia for about 18 months.  

It happened gradually, and at the time I had a LOT on my mind (was pretty depressed, bad relationship,etc) and I didn't notice it until it was too late.  I'd say the fibrosis occurred between months 5 and 15 at least, maybe 5-10 or something, with the worst of likely happening between 5-8.  At any rate at the 15th month mark I suddenly realized I lost .5 inches off length, and a whopping 1.25 inches off my girth (luckily I had measured at the 5 month mark).  Coupled with other effects of Propecia, the whole ordeal has been devastating.

I didn't quit Propecia until a few months later, since I didn't know what caused my shrinkage.  However, from when I first noticed the shrinkage until now, girth hasn't changed one bit, meaning once it got to a certain point it did not get worse even though I was still on Propecia.

I've searched the web countless hours trying to find hope, and I don't know what to do.  I've read that fibrosis is reversible from some sources, that it's not from others (probably more).  To combat it I take 50 mg of Viagra nightly along with 400 IU of Vitamin E and 50mg zinc.  Since quitting propecia, erections have gotten better, but not size.  It's been over a year since I first noticed the size difference, and I haven't had sex this entire time (I'm 21 and in college).


My question is this:  Is fibrosis reversible or not??????   I would be ECSTATIC with just HALF of my girth back (I was fairly well endowed before and can live with being average just fine).  I'm just so sick of living like this, I just want my old self again.

Bob22

Default:

try taking viapal -J found on actionlove.com along with vip cream and fish oil pills with every meal, also 5 grams of L-arginine and 1000 IU Vit E.  I think you will find this helpful, report yours results back here.

Hawk

Bob22,

I think of all the reputable sites you could have mentioned, you entirely missed the target when you mentioned that one !

Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums