under the age of 35

[astyanax]

since the new format,

i think this area is a perfect area for people in the same area of myself to rant, vent, rage.

i'll start.

working in a hotel doing room service, is just adding to wounds.  i'm 25 years old, and am getting to the point where i am losing my mind smiling, delivering champagne, and food to happy couples.

What's even more mind numbing is when we have those dom perignon orders.

Beautiful girls laying around, sometimes naked (drunk as hell), and "just leave it on the table".

Thank god, the previous happens rarely (but it does, and the worst part is I get a better cheque when that happens).

The other thing that drives me nuts, is walking through a hotel and just hearing a woman screaming.

How about you dudes?

I know all about the friends thing, and with my ED, the lieing that goes with it.

[Turmoil]

I'm 21....

[Wintercookie]

Turmoil,

I feel for you already.

[newguy]

28.. Hoping for a better day, but still trying to make this condition something that I have, rather something than I am. If that makes sense.

[skunkworks]

28 also.

Using (or planning to use) quite a few treatments. Still functional but nowhere near what I used to be.

[Skjaldborg]

30 and completely healthy! (Well, except for this one thing...)

The hard part for me is trying to accept that I will be dealing with this forever and that it may get worse. I am currently lucky ("lucky," that's a funny word.) that my curvature is not preventing intercourse and that I can achieve natural erections. However, the pain and hourglass deformity do put a damper on the libido and, of course, I am constantly worried about further injury. Oh to enjoy the days of carefree sex of seven months past!

The good news is as younger folks we may see better treatments in the near future. I also hope, and this may be groundless, that our youthful healing abilities give us an edge in the oft-quoted odds that 10% will experience spontaneous recovery, 40% will stabilize and 50% will get worse. I am assuming these numbers are based on a sampling including older men with other diseases and varying degrees of fitness. I need to maintain some glimmer of hope in these dark days.

Best of luck and keep fighting.

-Skjald

[newguy]

30 and completely healthy! (Well, except for this one thing...)

-Skjald

I'm very much in limbo too. The ongoing pain (which I think has gone away, only for it to return) is what occasionally gets me down. If I can be sure that my condition is stable and am able to achieve an erection I can at least consider plication or grafting. My fear is the unknown. How bad things might get... and the length of time that this drags on for. And the fact that it's hard to mentally come to terms with a moving target. If I know where I stand, I think I'll be okay.

[Wintercookie]

newguy,  I'm interested to know how long the acute phase Peyronies with the associated aching/pain has lasted in your case?  It usually last about 6 months for me.

[newguy]

newguy,  I'm interested to know how long the acute phase Peyronies with the associated aching/pain has lasted in your case?  It usually last about 6 months for me.

My case appears to be unusual (oh lucky me).  When I was 14/15 I injured my penis. No pain was present, but a curve developed. If anything it appeared to get slightly worse over the years. I came here, used the VED for a bit which seemed to help somewhat, so I was somewhat buoyed by that success. I tried traction, but much have overstretched or something, because one day about 1 minute after (not even at the time, which is weird) I experienced a dull pain in my penis. This persisted over the months, occasionally it seemed to be "gone" but then returned slightly. It's not ultra painful but it's still there which to be in bad news. This new about 15-16 months ago, so I would say that this is unusual. My theory is that I'm dampening down the condition with the vast array of oral treatments but that it continues at a low level and hence drags out for even longer until it reaches some kind of end point. It's just a theory tho.

I hadn't stated this before, but there does seem to be a new slight indentation on my penis, but nothing fast seems to be happening to it, so hopefully nothing will. One corpus Cavernosum is and has been fine since day dot, so in that respect this is a somewhat localised problem. My ideal situation would be that I emerge from the other side of this, and can have plication surgery, since that is minimally invasive. If I have to have grafting I don't suppose thats the end of the world. My fear though, is that this situation is going to drag on for longer and longer. I'm not going to go the injection route so my treatment options are limited. With some treatment options there appears to be a "an i helpign, or making this worse" element, so I'm keen to avoid those and stick with the oral routine.

Mentally I'm okay with where I'm at, and I don't particuraly even regret that this has happened to me. I think that everything can be a learning curve and can teach us valuable qualities. My concern is that my mindset "may" hinge on the thought that "one day this will be behind me". For one I don't know whether it hinges on that, and secondly I don't know that I will ever be able to put this behind me. It is hard to know how I will feel if negative changes occur in my condition. I guess that unknown may be tested in future.

[Wintercookie]

newguy,  What effect has Peyronies had on the shape and funtionality of your penis? What's the angulation, rigidity, lumps, dents etc.  I mean can you still have penetrative intercourse?

[newguy]

newguy,  What effect has Peyronies had on the shape and funtionality of your penis? What's the angulation, rigidity, lumps, dents etc.  I mean can you still have penetrative intercourse?

About 30 degrees to the left (and a light upward curve that really isn't of any consequence). It's half way up the shaft though and is positioned in such a way that created a slight hinging effect. This potential buckling has made me stay away from intercourse for quite some time as I'm scared of making the current pain worse... a bad situation worse.

I am able to achieve hard erections with the use of Cialis so that isn't a problem thus far. As stated I have a new very slight dent, but it's so slight its on no consequence. I will be watching it over te months to see if that changes. There is very light wasting at the site of the original damage, but again for all intents and purpose currently curvature to the left is the main issue,

My concern is that this is the initial injury. I do not know what the current pain will bring. If it results in very little change and does eventually stop being painful then I'm not in a bad position at all. If peyronies really goes to town on me though... i mean, who knows what could be in store.

Any chance you can detail your struggles... bouts etc. From your posts it seems like you've been struggling for many years this this conditon.

[Old Man]

newguy:

You stated in your post below that you experienced some help with VED usage. Question: Why did you stop using the VED therapy if you were seeing some good results??

Most of us that have used the VED therapy did experience at least some positive results, but it took more than a few days or weeks of VED usage. It is my firm belief and opinion that you should resume the VED therapy. The increased blood flow through using the VED can only add to the positive results you have already seen. Most guys see better erections and better size and shape in their flaccid state. This alone should be an incentive to keep up the VED therapy.

The above are just my thoughts and opinion for what it is worth.

Old Man

[newguy]

Oldman - I didn't stop as such. I thought I would introduce traction in addition to VED useage. In retrospect I think that such a strategy was unwise. I have talked a few times about reintroducing VED use over recent months, but the pain is of concern to me. I'd feel more comfortable with introucing it if no pain was present. I figured that perhaps the best strategy was to wait until it subsided OR until/less very noticable physical changes occur and then go with the VED. The jury appears to be out on whether VED use is a good idea where pain is present.

Hmm, I will perhaps take the levine approach to traction and apply it to the VED instead. I let him know the traction use seemed to result in problems for me. He seemed to think that even with that being the case, it would be a good idea to restart it unless pain worsened. I'm not keen on resuming traction at this time though because I just don't think its right for me and I've seen that it has been problamatic for a few others too. I think i'm very suseptable to injury, so perhaps VED use is the way to go unless pain worsens after I reintroduce it.

As you can see by my wros, I'm somewhat conflicted as to what action to take. I'll keep you all posted.

[Wintercookie]

newguy, My advice to you is you know your body better than anybody else and you should trust your gut feeling and go with it.  If you don't feel comfortable with using a traction device leave well enough alone for the time being.  It's so easy to aggravate plaques.  I can't see that using a VED could cause any aggravation to the plaques unless you have pain at the base of your penis where the device is sucked against your lower abdomen, this has caused one of my plaques to flare up for about a week in the past.  When I get a replacement pump for my Soma Erect Xtra device I plan on resuming pumping again.

[newguy]

wintercookie - I have seen a few comments from people on the net saying that traction has injured their penis at the base, so I do know what you mean about being careful. For what it's worth I think that VED therapy is safer than traction. Reports of people injuring themselves using it appear to be rare unless someone overpumps etc. With traction for are a small number of reports of people not particulalrly doing anything "wrong" at all, and yet they still get injured. Of course this really does have to be weighed up against the many successes stories (as part of th studies), so I would never dissuade anybody from traction as I think it works for many people. Like injections tho, if you're one of the unlucky ones you then it could potentially hinder rather than help.

For what its worth the pain I experienced from traction was quite close the the existing stable plaque, which makes me think that in some cases maybe due to the particular nature and positioning of a persons scarring, it can easily tear under not much traction at all. This I believe can reactivate the condition, and once that has occured its anyones guess where a plaque appears since peyronie's can run riot.

Logically, you would think that if we fast forward a year, I will pretty much know where I stand. It would go from being unusual to highly unusual if that isn't the case. The mall indentation is perhaps an indiciation that the "healing" process is
kicking in, and so we will see where I end up. I'm on a very comprehensive oral treatment regime, and I do have the VED at the ready, so perhaps I'm better able to face this struggle than many people in my position.

[Hawk]

Just a reminder this is the "Psychological Aspects" Board.  All topics under this board should relate to that subject. It cannot be a catch-all topic of every aspect about being under 35.  As is, entire topic could be moved to the general discussion board since it has hardly touched on the psychological aspects of Peyronies Disease.  

[newguy]

Hawk - Yes, sorry about that. My intention was to state the troubling aspect of this for me (that there doesn't appear to be a definable endpoint- due to pain etc). I perhaps went into excess detail about my plans, history etc even though it was psychologically useful for me to do so.

I can see the problem with accidentally creating a community within a community, so I'll try to cut down on the excess info. I really should've just directed people to the My History page in my sig. I urge others to create one too.

I do feel that the psychological component can be very different for different people though. For some it may relate to relationships, marriage issues and the like, whereas for others they may confine it very specifically into one aspect such as "pain" or making it to a certain point in time, then expanding the discussion beyond that if/when that point is reached. Hence probably why my comments felt slightly out of place here, even though this was very much me discussing my feelings and concerns in relation to my conditon (even if it didn't seem like it).

Anyway, thanks for the support and suggestions guys. I appreciate it.

[young25]

I am 26, the mess started at 24 & in last 2 years I have tried most of the oral treatments listed here to no avail.. Its getting worse to say.. The only thing left now is VED & DMSO.. I am not pretty sure about VED as my condition did not start because of an injury..no hard plaque but scarring I think.. and I have tried to be emotionally very strong but as they say everthing has a threshold & I am reaching mine as options are being eliminated..

oh yes ED is a gift of peyronies which I got, so lesser said the better

[Iceman]

young 25 - i feel for you man - at least I got mine at 43yrs - try the VED it has worked a bit for me i would say - also have you tried pentox??

[Wintercookie]

young25, Have you been prescribed a PDE5 inhibitor such as cialis.  In the early stages of peyronies the ED can be psychological in origin and taking say Cialis or Viagra will prove to you that your erections still work and that will give you an enormous psychological and confidence boost, I know it did for me about 7 years ago.  I don't think young women will mind an irregular shaped penis as long as it still works and your problems will give you an opportunity to develope Intimacy in the psychological sense of the word with young women.

[Old Man]

young25:

No one better than me can understand your feelings right now. I had serious Peyronies Disease problems at the age of 24. Without going into all the things that were tried and failed over the years, I will just cut to the chase as they say in the movies.

Nothing that I tried all those years since then worked. Finally, in 1995 after a radical prostectomy and the return of Peyronies Disease symptoms again, the VED was prescribed for the impotence that resulted from the surgery. It was soon discovered that the Peyronies Disease symptoms were getting less as a result of the VED usage.

My uro and I developed a very simple therapy schedule using the old Osbon Classic manual one cylinder VED. Later, I purchased a newer updated model VED, the Osbon Esteem manual unit. Using the same protocol, it took only about 6 months to realize good results. At the end of one year, I was returned to the size and shape that I was before the original bout with Peyronies Disease.

I am stating all of the above to try and enlist you into going for the VED therapy. It can and will help with most any ED and Peyronies Disease that a person has. Many guys on the forum have reaped much benefit from VED usage. Seems to me like that you have all but wasted the past two years searching for an answer only to find none.

So, why don't you give the VED therapy a try to see what can happen for you??

Old Man

[young25]

Thanks every1 for the support.

Iceman,

I tried pentox for give n take 6-7 months & I think it worsened my condition so I stopped taking it.

Wintercookie,

I have just recently started 5 mg cialis E3D. It may have helped a bit for Nocturnal erections still not anywhere close to helping me out for sex.

Oldman,

I have been contemplating VED usage for last one year, what puts me off is I didnt develop peyronies because of injury as well as before peyronies I was a healthy male so while being fit if my nautural+ nocturnal erections coudnt prevent peyronies how will VED help. I am not questioning the help VED can provide just in my case I cant convince myself, but soon as I said I am out of options will give VED a go.

[Old Man]

young25:

Natural and nocturnal erections will not give the penis as much "exercise" as the vacuum pull of the VED. The VED can and will exert many times the pressure that will pull much more blood than the other erections. The theory behind VED therapy is that the careful use of it will remold or reshape the penis. The principle is basically the same as a workout of your muscles at the gym. However, the penis being a smooth muscle rather than striated muscle tissue, it takes a longer period of the VED exercise to produce any lasting results.

Now, the VED therapy does not work for all guys. There are some whose Peyronies Disease condition does not lend itself to responding to the vacuum pressure exerted with the VED. These cases simply refuse to respond to the stretching provided by the VED. Only through a trial period of VED therapy can one determine if it works for them. Therefore, one must try the therapy to determine if it does work for them.

Lastly, the VED will produce greater blood flow into and out of the penis during use. This will cause the corporal chambers and tunica to inflate to higher levels than natural or nocturnal erections. All I know is that the VED therapy was the only effort that I tried over the 56 years of Peyronies Disease that produced any good lasting results. Now, at age 80, I can achieve an erection at any time I desire and can have sex also even after a radical prostatectomy.

Old Man

[newguy]

Wintercookie - I definitely think there can be a psychological element to ED in sufferers of peyronie's, for some individuals at least. For me use of viagra/cialis helps with that greatly, even though I'm sure there are physical reasons for some of the ED too. I sometimes worry that if I do emerge from the other side of peyronie's (possibly via surgery but who knows), whether even then I will be worried so much about reactivating a bout of peyronie's that it will play on my mind and hinder my enjoyment. That has happened before to some extent.  

[Hawk]

Guys,

Not necessarily the last post, but almost every post in this thread is off topic and should be under causes, VED, oral treatments, or some other Board.

I was hoping you would self-police this topic and keep it going but we cannot just have a catch-all chit chat topic.  We already have a General comments board for things that do not fit under other boards.

[Skjaldborg]

So as to avoid getting deleted by the powers that be, here are some topics we might want to focus on that deal with Peyronie's Disease and the younger man:

1. Dating/relationships

2. Newly married

3. Starting a family

4. The shock of being otherwise healthy and coping with a disease that is rare in younger men

5. The stress of living in a youth and sex-obsessed culture with a disease that can put limitations on our sexual abilities

6. How the disease affects younger men. Does it progress more quickly? Is it more/less painful? How long is the active period? Does being younger and free from chronic disease improve our odds of recovery regarding the oft-quoted statistics that 10% spontaneously improve, 40% remain stable and 50% get worse?

7. How urologists and other doctors treat younger men. Are they aware of the challenges young men face with this disease? Note: My uro didn't. After finding significant scarring on my second visit he just shrugged, said there's nothing he could do and that I should just get surgery (I have minimal curvature and good erectile functioning with no viagra or cialis). When I asked about counseling because of my anger and fear about the disease he said "men don't get counseling for sex problems anymore because viagra solved all those problems." This doctor had no clue how to help a younger man with this devastating diagnosis.

I think this is section could provide significant help for younger men struggling with this disease. We just need to tighten up the topics a bit.

Good luck and keep fighting.

Skjald

[Wintercookie]

Skjaldborg,  This is a good comprehensive but not exhaustive list but it may still run foul of the powers that be.

I will say that your Urologists reaction to your Peyronies was not IMHO totally unreasonable given your circumstances i.e minimal angulation and good erectile functioning without the need for oral erecto agents.  I think he is right when he says there is nothing he can do about the scarring and I was referred for psycho sexual counselling but it proved to be unsatisfactory since the therapist didn't even know what Peyronies disease is and I had to spend the first 30 minutes educating her!   She even suggested Kegel exercises, I was incredulous and so I don't think your missing much.  The best thing any Urologist has done for me is to prescribe Cialis for my ED.

I fear I may have gone off topic and so I apologize in advance if I have.

[Brewpunk]

34 years old here & just developed this disease back around April of this year. Psychologically, all I can say is it's been a nightmare... one that I haven't yet woken up from. The timing couldn't have been worse, I had just broken up with my ex-girlfriend two months prior, lost my cabin in the woods on 6 acres(it was beautiful), & was pretty much forced to move to a city w/ roommates (total fish out of water) due to circumstances. I was under a ton of stress at the time & still am.
Well, after adjusting for a couple months, I began dating someone new. I caught a lot of flack at first from friends, etc... due to her being transgendered (whatever, I could care less what anyone thinks); I brushed it off for the most part. Within the first month of dating her, I started noticing problems. At first I'm thinking maybe I'm going at it a little to hard, give it a rest & it will be fine. Things just got worse from there. I kept telling myself it was fine & that maybe, I just need to rest it longer, so I kept extending my periods of rest, to no avail. I gave it a good solid 2 weeks rest when she went out to Cali to visit her brother & thought..."It's got to be fine now" Wrong! After celebrating her return, I was in so much pain & the hourglass shape was the worst I had seen it. I freaked out & checked myself into the ER only to be misdiagnosed with "contusions", given 600mg ibuprofen & told to leave it alone for a while. That didn't help much either so I finally went to the urologist & found out it was Peyronie's. He recommended vitamin E & ibuprofen. I'm supposed to go back in February to see if I've improved, if I haven't then...surgery!
In the meantime, I haven't given up. I talked him into hooking me up with some Pentox... he lectured me on how it hasn't been proven to work. I pretty much told him that I don't care & am willing to try anything. On top of that, I'm taking about 7 or so supplements daily as well as experimenting with oxygen & (don't cringe) urine therapy. I'm still with the same woman & I am forever grateful for her support through this. Hell, I suppose since she has something between her legs she doesn't particularly want &  may go under the knife sometime in the future makes it easier to understand my plight... who knows?
I still worry that this condition may be a burden on her, as it is a burden on me. I feel bad that I have to put someone else though this, but at the same time, I definitely don't want to lose her. I don't think I will, but I often obsess over what I'm putting her through with this.
 

[Skjaldborg]

Brewpunk,

Actually, Pentox does work. Dr. Lue published a study, which can be found here: https://www.peyroniesforum.net/index.php/topic,772.0.html

I have been using Pentox for 4 months and at an appointment with Dr. Lue and his assistant last week, I was found to have no calcified plaque at 8 months since diagnosis. Also, I am experiencing much less pain.

Regarding surgery, most urologists will recommend you wait until the disease is stable before getting surgery. The stable phase may take form 12-18 months since the appearance of symptoms. There's no need to rush surgery. Also, most urologists and some male sexual specialist doctors ( including Dr. Lue) DON'T recommend surgery unless your curvature is so severe that sex is impossible or you have very poor erectile functioning. Surgery is the last resort and there are other things you can try, such as pentox and VED, before doing that. If you do need surgery eventually there are some members here who can provide some excellent advice and information on the subject.

By the way, congrats on your relationship. I can tell you that having my wife by my side has been a huge boost psychologically. Don't let other people give you a hard time and don't think that you are "burdening" someone with this. Peyronie's happens and it's not anyone's fault. Be happy, be good to your partner and keep looking forward. This is not the end of the world.

Best,

Skjald

[newguy]

Brewpunk,

Actually, Pentox does work. Dr. Lue published a study, which can be found here: https://www.peyroniesforum.net/index.php/topic,772.0.html

Yes, and check out this very impressive new study:>>pentox study<<

I've posted the link in a few places now so sorry about that. I don't want anybody to let it slip by them, when it's most likely very useful from a personal point of view, and to take to a urologist! Please direct all discussion relating to the study here:  https://www.peyroniesforum.net/index.php/topic,996.0.html  and not in this thread.

[Salix]

Hello everyone,

We're very happy to see this section for younger sufferers.   As a younger couple we have had many of the same emotional, psychological and, of course, physical problems discussed on other sections of this website, but have both often felt left out as many of the posters both on this site and others are older and not had encounters with Peyronies until later in life.  Rather than tell you about the issues we have had over the years (yes many years) we both thought it would be helpful to tell you what worked for us and hope that it can help others.  If nothing else maybe it will let others know that they are not the only young people dealing with this.

So here it goes (in no particular order):

1. The sooner you deal with this, the better.  The longer you leave it, the worse all of the effects become physically, then on each of you personally and as a couple.  Stop asking "why me" and start looking at how to deal with it.  It is a disease like diabetes, heart disease and cancer.  It isn't nice, and it isn't your fault, but you have to deal with it.  You can also overcome or deal with the problems with work and lots of help.

2. You have to identify that while this disease physically affects the man, it emotionally and psychologically effects both partners - severely.  It will leave you both with feelings of anger, despair, rejection, frustration...the list goes on.  The sooner you identify this and get help, the better.  Do not think you can handle this alone.  If you do not have a partner, confide in a good friend, family member you trust or your family doctor.  
 (a) This means you must both discuss this with your family doctor and we recommend you both go for counselling...as individuals and as a couple.   Go as soon as possible and find out as much information as possible.  Try many counsellors. It is tough, but do it. We had to try a few before we found a couple that worked well.  If you are not comfortable with them...get another.  Also, direct them. We had one that, even though she was a sex therapist, didn't understand the disease. Her solution was "just get a vibrator for the wife and have the husband relax more".  
 (b) Women are good at understanding there is a problem and wanting to talk about it. Men do not usually want to talk about it. Read the note in the psychological forum of this site given by Christine.  She gave an excellent explanation from the woman's standpoint.  
 (c) Men - comfort your female partners. Men often become withdrawn and angry. They do not realize they need to pay attention of the women's suffering and acknowledgement of the support she is providing is as critical to her as medical and her help is to you.  Women are (from what we have personally experienced and found) far more adversely affected by the lack of emotional support and touching aspects of lovemaking than they are of the actual act of intercourse.
 (d) Women - men do not always want to talk, but they still need you to be understanding. This doesn't however, mean that you should enable them to hide from the problem. Being young, we both thought that it would go away (figured it was a phase or that he had just hurt himself and would get better).  Women need to support by encouraging the man to act sooner to get help.  Remind them that they are not alone. Show them this site and others. Men feel very very alone.   And do not wait for help. Even if you think you are giving the man space and trying to understand how hard this is on him, waiting and letting it destroy your relationship and both of you emotionally, is far worse than confronting the issue – gently.
 (e) KNOW YOU ARE NOT ALONE:  Once we got to the specialist's office for treatment (went with injections...fortunately over many many painful months they did work) we found there were many other young men with this problem - they all come on the same days for injections....there were more young men than older ones sometimes. The doctor had told us this, but we didn't believe him. THERE ARE A LOT OF YOUNGER MEN WITH THIS DISEASE...they just do not talk about it.  Oddly, neither do their women talk to anyone about it.
 (f) KEEP BOTH PARTNERS INVOLVED: You will notice that we put that "we went to the doctor" and "we went for treatment".  If you have a partner (wife, girlfriend, lover) you should both go to as many appointments together as possible and both go for counselling (caveat: you may both need your own time sometimes too....especially counselling).  It helps you to learn more and means less need to explain later (basically the female usually wants an explanation and the male wants her to know but doesn't want to talk about it).  It also helps your relationship. We were young and just married when this problem first affected us. It is tough starting out a relationship with this, let alone have it enter a longstanding one.  You do not get the opportunity to have the happy carefree intimate sex bonding time that comes in most new relationships (more common occurrence at younger ages than in older people, though we do acknowledge that many other people also are starting new relationships and facing this) but making this a part of your relationship helps you to add another layer to bonding as a couple.  Note, however, that this isn't always easy.  

3. Go and see as many medical specialists as you can (for younger couples like us, this also meant a fertility specialist...Peyronies does not cause infertility, but if it is severe enough, it can mean no penetration, thus no fertilization...thus you need help if you want kids).  Not all of the doctors know what they are doing, so do not give up if one doesn't help you. You must be the master of your own destiny. We think this is where younger people fall short. We have both noticed that older sufferers seem to go to the doctor and for other help sooner. Life experiences maybe; discouraging doctors also.  We were both too scared and embarrassed to go (wife actually went first). Doctors are not perfect, but some really can help.  We had several that did not help at all (one even turned to the wife and said "maybe you're not motivating him enough").  Because you are younger, they often do not take you seriously and will look for other problems (eg. they think you're just there to try Viagra or Cialis for fun).   We also ended up with a couple of awesome one.  When you go though - be honest.  Neither of us wanted to tell the doctors about the problems at first. The husband of us lied on many occasions (with the wife sitting there busy being mad at the world) to the doctors and this slowed the progress of help --- didn't mean to lie, just didn't want to admit the severity of the problem. BE HONEST and direct or the doctors can't help you.

4. Do your research and find out what you can about the disease and yourself. We found that part of dealing with this disease meant learning more about ourselves. Being younger meant we were/are still figuring out who we are as people and exploring how we feel about ourselves and the world around us both sexually and in general.  We had good books recommended by the counsellors - one noted that people sometimes would rather read than talk.  One of the books we both liked was "The New Male Sexuality" by Bernie Zilbergeld, Ph. D.  

5.  Relax and enjoy all of the aspects of sexual interaction.  This means taking the focus away from the penis and putting it more on overall enjoyment. Enjoy kissing one another, enjoy touching one another, trying new things, being spontaneous and having fun together.  


We both hope this helps someone.
Best of luck.  

[diminishedhope]

Salix, that was great advice. My wife and I have been through much of what you referred to and we would have been blessed to have been told that same advice years before. It's great for others out there. What a good load of advice to start the year off with!
HI, everyone I'm new here and soon I'll be back in this area since I'm under 35 too.

 -diminishedhope,

[MedStudent86]

23 years old....medical student...Just noticed the symptoms of Peyronies Disease coming on about 1 1/2 months ago. I am pretty certain the injury occurred in February, from having sex half erect one night very drunk.

The emotional impact of this has been overwhelming. I have been avoiding all sexual contact since the onset of symptoms. A bend to the left with hourglassing at the bend. A big problem has been that I have about 5 different girls that I sleep with regularly, and I have been blowing them all off and giving them excuses, but it's becoming very hard and I'm running out of excuses.

To be honest, I am so focused with studying and exams constantly, that thats been very helpful in keeping my mind off of it. But I know that I have to deal with it soon. If this thing gets any worse, or its unable to be cured, I honestly feel like I'd rather not live, then have to live my life like this. I was extremely sexually active prior to this happening, and I am a bodybuilder, goto clubs frequently, and have a pretty active sex life and am very popular with women. So, hooking up and performing great sexually is a big part of who I am, and what I enjoy in life. I don't feel like I should HAVE to explain to a chick that I have some sort of condition with my penis, I feel like I'd rather have any other affliction in the world, than something like this which has such a huge self-esteem impact. I try not to think about sex as much as possible, but honestly the lack of attention and closeness with a female is getting to me. I'm used to always having at least 1 or 2 girls around for company, and now I'm avoiding intimate situations at all costs.

People say its extreme that I'd say I dont wanna live like this, but honestly. I think that half of life should be sex, its the greatest thing in the world, and to have to alter your lifestyle and do things differently than everyone else your age is not fair. I've spent a lot of time in hospitals prior to getting into medical school, and I've always seen things from the physicians viewpoint and very rarely the patients, and if I was, it was always for something that could be diagnosed and treated effectively. I don't even know where I'm going with this, I'm just pissed, and not very optimistic about things at the moment.  

[Skjaldborg]

MS86,

The mental part of this disease is probably the worst part. My most difficult realization was that the deformities I have do not change who I am as a man. I'm still the same guy I was a year and a half ago. In fact, I'm leaner and stronger from focusing my anger into exercise and I have gained a mental toughness from knowing that I can handle a really crappy medical condition. If you can handle this you can conquer just about anything.

As far as sex goes, keeping yourself healthy and being attentive to the needs of the girl you're with will get you a lot farther than a "normal" shaped penis. As a med student, you're probably already aware that very few women achieve orgasm through penetration alone. Let's face it: our penises are more important to us than they are to the ladies.

Here's another kicker: most girls would not even realize there is anything wrong with you unless you told them. (And we always wear condoms during sex, right? Right!?) The male organ is a weird looking thing even in the best of circumstances. Unless your girlfriend is taking daily snapshots of you below the belt, she might not notice. And if she did, she probably won't care. Worst case scenario if a girl asks about it you can say it's a minor injury from crazy sex awhile back. You don't have to tell them that you have a "disease" if you don't want to.

Long story short, it sucks getting Peyronie's. It sucks worse getting this under age 30 when most of us are still sowing wild oats or perhaps beginning to settle down with a potential life partner. The best thing you can do is to use the medications (like pentox) and then give yourself a few months to heal and stabilize. Things really will get better when the pain goes away, and it almost always does in younger men.

Best of luck,

-Skjald

[newguy]

MedStudent86 - As much as I understand you wanting to forget about this, there are treatments which to varying degrees have been shown to be useful in improving or stabalising peyronie's in some individuals. I note that you say elsewhere that you're going to see a urologist soon. To minimise the chance of disappointment I advise you to print off the pentoxifylline evidence and take it with you:


https://www.peyroniesforum.net/index.php/topic,772.0.html

https://www.peyroniesforum.net/index.php/topic,1004.0.html


Also, it's probably not good to avoid erections at this time. If you have ED you might want to consider taking the PAV cocktail, as prescribed by some urologists of note (pentoxifylline, l-arginine, viagra). Viagra can be interchanged with other phosphodiesterase type 5 inhibitors (cialis, levitra). Being pro active early on, might help with yoru mindset. Hang in there!

[harchunk]

Hello I am 39 and I have had it for 4 years now.  I have not tried any of the treatment options.  Why some may ask .  Because I am married to a very understanding women who does not care.  Point being is having loving and caring people in our lives helps the pyscological issue of it.

[BrooksBro]

Rarely do physical conditions improve on their own.  And early treatment is usually far more effective and less expensive, than treatment well after the condition has progressed further.

Taking the advice of an ill-informed urologist, I wasted nearly a year taking only vitamin E after I first noticed my symptoms, with no change.  Eight months agoI began seeing an expert who started me on treatments (PAV cocktail, traction, testosterone replacement) that are improving my condition.

Some estimates are up to 10% of all men have this condition.  Any long practicing urologist has patients with this condition.  It may be new to you, but nearly all urologists have seen it before, if not in their practice, then during their education.  Most (but not all!) understand the psychological component, especially with younger men, and are highly sensitive to it.

Find the best urologist (male sex specialist if possible) in your area and make an appointment for "pain in my penis."  That is all the scheduling person needs to know.

DO NOT WAIT!

[LWillisjr]

Hello I am 39 and I have had it for 4 years now.  I have not tried any of the treatment options.  Why some may ask .  Because I am married to a very understanding women who does not care.  Point being is having loving and caring people in our lives helps the pyscological issue of it.

Having an understanding partner certainly helps. But let's not forget that just because one has Peyronies Disease, it impacts all of us to varying degrees. I don't know your case, but those with slight curves may get by with no treatment and an understanding partner. While others may have a severe case. I am one of the fortunate ones who has an understanding partner, but my curve was so severe that intercourse was getting painful for her as well.

[harchunk]

Hello I am 39 and I have had it for 4 years now.  I have not tried any of the treatment options.  Why some may ask .  Because I am married to a very understanding women who does not care.  Point being is having loving and caring people in our lives helps the pyscological issue of it.

Having an understanding partner certainly helps. But let's not forget that just because one has Peyronies Disease, it impacts all of us to varying degrees. I don't know your case, but those with slight curves may get by with no treatment and an understanding partner. While others may have a severe case. I am one of the fortunate ones who has an understanding partner, but my curve was so severe that intercourse was getting painful for her as well.

I have read alot of the symptoms and degree of the condition which affect members here,  and I fall right in line with them.  At first I had a hard time with my symptoms(loss of size, curvature etc..) I was embarrased, ashamed, and the 'why me attitude'.  But I am at the point where I have learned to work with my condition and so has my wife.    

[MedStudent86]

Great advice. The problem is not really finding a urologist who is aware of peyronie's disease, but finding one who will follow the latest clinical data and prescribe medications or treatments accordingly. I recently visited a urologist last week, and he told me to 'wait and see'. He also told me and I quote, "Start worrying more about school and focus less on your pecker." So, you can see that the visit really was not very productive. I was even a little more perturbed because the conversation was one medical professional to a future medical professional, and he was still quite dismissive. He was aware of Pentox, Verapramil Inj, and various surgical treatments, but he said that other then surgery, all of the treatments are "Like trying to raise the sea level by pissing in the ocean." So, going to have to ask one of my friends to prescribe me the Pentox, which I really didn't want to do as I'd like to avoid them knowing about my condition, but my urologist is uncooperative so it is what it is.

In no other field of medicine and with no other condition will you likely EVER be told to 'wait and see.' The problem is that most medical professionals view this problem as non-life threatening and therefore not really a priority. They discount how much of an impact this has on quality of life, and I suppose if you were seeing patients with prostate cancer and the like on a daily basis, it'd be easy to feel this way.

A proactive treatment is always the best approach to any disease. In the case of Peyronie's, you want to intervene with some sort of therapy before significant damage and remodeling of tissue has occurred. Once you reach a certain point, in many disease processes, you reach a point at which significant damage is done and returning to a pre-diseased state becomes more and more unlikely even with treatment. Understand that in many instances, medicines only remedy they can offer is to attenuate the symptoms of a disease, but not actually cure the disease.

Let me also say, I think that any patient over the age of 40 should be tested for hypogonadism. Male testosterone levels start to decline after the age of 25, and continue downward. There are numerous benefits to hormone replacement therapy, not the least of which is more frequent and rigid erections. Additionally, men over the age of 40 should consider HGH therapy as well.

Rarely do physical conditions improve on their own.  And early treatment is usually far more effective and less expensive, than treatment well after the condition has progressed further.

Taking the advice of an ill-informed urologist, I wasted nearly a year taking only vitamin E after I first noticed my symptoms, with no change.  Eight months agoI began seeing an expert who started me on treatments (PAV cocktail, traction, testosterone replacement) that are improving my condition.

Some estimates are up to 10% of all men have this condition.  Any long practicing urologist has patients with this condition.  It may be new to you, but nearly all urologists have seen it before, if not in their practice, then during their education.  Most (but not all!) understand the psychological component, especially with younger men, and are highly sensitive to it.

Find the best urologist (male sex specialist if possible) in your area and make an appointment for "pain in my penis."  That is all the scheduling person needs to know.

DO NOT WAIT!

[lespleen]

GENERAL: I've had peyronies now for approximately 8 years time. symptoms became apparent around march of 2002. I was 23 at the time.  the disease process waxed and waned interminably. Unfortunately, i ran into  a series of Urologist who were either incredulous  given my age or for whom  " wait and see" was the policy of choice. The frustration i flet at the hands of these urologist was extreme to say the least. I know that i don't have cancer or some deadly affliction but overtime this thing deprives you of those very things which are constitutive of life. Quality of life is reduced to such an extent that you might as well have been struck with a more " honorable" life threatening illness. I even believed in the power of prayer but how does one ask a pastor or members of the congregation to plead your cause before God. lol!!!I discovered Dr. Herazy's site perhaps a year after the initial onset of symptoms. I tried a number of his recommended therapies with varying degrees of success.  

PSYCHOLOGICAL IMPACT :I would have been a different man.  i would have been less hesitant in actively pursuing and holding onto the love of my life. I loved that girl too much. i couldn't inflict this nightmare on her.This disease completely devastated me. I was uncertain as to where i should channel my energies in life. Slowly over time you no longer see yourself  as  a viable potential mate and you are  overwhelmed with a sense of aimlessness: why bother excelling in some career path if you can never share your life with the woman you love. Honestly , to some extent sex really is the "prime mover". in a presumably male run world why has science turned its back on us for so long. wish there was a male equivalent of Oprah out there pleading our cause before the masses.lol.... the disease is of unknown etiology and seemingly multifactorail/causal..........okay fine.......but there is always a causal factor among others  that makes the difference ......the difference maker. i really feel that the  etiological model in medicine can be applied to this disease ; however, intractable it might first  appear to be.   if you dismiss the disease  from the outset as being  irreducibly complex and baffling what real progress can be made. I have the feeling that urologists have a very mechanico-physical conception of the male organ. these guys are really good at applying very linear physical principles to the treatment of urological issues. perhaps this is why surgical intervention is their preferred treatment of choice when all else fails.    

 PROGRESSION: from 23 to 26 despite fluctuations in symptoms i would say that there was an overall general improvement. which peaked around the end of 2004 and perhaps the entirety of 2005. During the early stages of the disease process my body would bounce back from inflammation subsequent to sexual activity. Around 28 i began to feel the lingering effects of  diffuse inflammatory processes. My point here is that you should take action early on. the peyronies i had at 23 is not like the peyronies i'm living with today. Also you guys are so lucky: the treatment options back in 2002 were slim to say the least. Pentox, traction, etc. , offer you guys so much more.


Last year i reinjured myself during sex and have experienced the worst symptoms to date.  i started taking ALC on a daily basis. Things waxed and wained but did not worsen. i'm half scandinavian half african ........ i don't know perhaps  they could isolate the constellation of genes  which among other factors , predispose a man to peyronies disease , given my biracial background? I guess i'm just thinking aloud here. My point is the following:  if you've recently come down with peyronies-like symptoms go and see a counselor rapidly. This should be standard protocol for urologists especially when attempting to manage  this  disease in  younger men.  Slowly but surely this disease begins to weight down on your psyche to the detriment of friendships and your career, self image , etc.    

[GS]

To lespleen and all the other young men with Peyronies Disease;

My heart goes out to all of you.  I'm 60 and got Peyronies Disease when I was 58.  The only good thing I can think of for a young man with this disease is the fact that I honestly believe a cure will be found in the not too distant future and you guys will be young enough to benefit from it.  You all have a lot of life in front of you and it's very important to keep your mind on the positive things and not awfulize the future.

I don't think there would be anything wrong with seeing a counsellor about this issue.  I lost my wife in an accident when I was 51 and I don't think I would have been able to go on without professional help, including antidepressants.  This is nothing to be ashamed of and talking to a professional therapist might do wonders for you.  You will feel better just being able to talk about your frustrations with someone.

In the meantime, stay connected to our website and forum; there is a lot of good information here.  And get a VED and use it religiously; that has been the only thing that has given me any hope of improvement.

Good luck to all of you.

GS

[luka-brasi]

@lespleen

your quotes:

PSYCHOLOGICAL IMPACT :I would have been a different man.  i would have been less hesitant in actively pursuing and holding onto the love of my life. I loved that girl too much. i couldn't inflict this nightmare on her.This disease completely devastated me. I was uncertain as to where i should channel my energies in life. Slowly over time you no longer see yourself  as  a viable potential mate and you are  overwhelmed with a sense of aimlessness: why bother excelling in some career path if you can never share your life with the woman you love. Honestly , to some extent sex really is the "prime mover".

Slowly but surely this disease begins to weight down on your psyche to the detriment of friendships and your career, self image , etc.  

you speak out of my heart!

@GS

i have the highest respect for people that went through similar destinys as you.
you don't have to be ashamed of anything.

strengths to both of you!

luka

[ferenfar]

I'm 19.

I might as well spit it all out, since this topic has been created created for expressing our feelings.

We were at a party 2 nights ago, at a friend's place. We were sitting in bed, my hands were wrapped around her as she lay her head on my chest. They left us alone in the bedroom so we talked. She told me how I was one of those very few unique people that she came across in her life, "truly authentic" she called them. I've known her for 4 years.

I was holding her hand and playing with her fingers, and I wished that I could embed that very moment into my memory forever, especially the touch of her skin and the warmth of her body. And then she said it, in the most elegant possible way a woman could say such a thing. I mumbled, but I finally uttered what I have always been programming myself to say: "No I think it's better if we just stay really close friends."

I said I could not really explain this to her. She replied that I needn't to, and that we shouldn't feel awkward and that she'll always be there for me when I'd need her. I kissed her on her forehead. I've never kissed a girl on the lips.

I don't know if she was aware of the fact that she was the least likely woman in the world to which I would have given That answer. In my long years of repressing any kind of feeling of attraction towards females I had never eventually failed. But the next day I cried like an idiot because I couldn't be with her. God, I love the way she smiles with her eyes.

I cried like an idiot throughout writing this post. Hell, it's getting kind of hard pushing through this.

Peace,
ferenfar

[GS]

ferenfar,

When I was 19, I literally walked around with a long, straight erection; so, I can only imagine what it would be like to have my hormones going crazy and having a curved penis at the same time.

Based on your earlier post, it sounds like you have a congenital curve rather than Peyronies.  That is a good thing...believe me, I have Peyronies and it can be worse because of pain going along with the erections and the fact that you don't know how bad the curve is going to get.

If this girl is who you think she is, you can be honest with her.  You can tell her your issues when the time is right and she won't walk away because of it.

Trust me...a man with a curved penis is still a man and he might be a better man than a guy with a straight dick and no heart.  It will take a little courage on your part, but it will be more than worth the effort.

If you are willing to work with her, she will be willing to work with you.  It may be uncomfortable at first, but the first time is always a little uncomfortable...even if you have a perfect penis.

Good luck and let us know how it all works out.  I thing you will be surprised.  It will all be a lot easier after the first time.

GS

[Tim468]

Oh man, what a heart-breaking post.

You could try honesty. It might be even better than hiding the truth. It might set you free. It might open your world to love, affection and (dare I say) mind-blowing sex.

If she accepted such an answer from you with such love and grace, it is inconceivable that she would do anything other than prove to be loving and supporting if you revealed your fears.

And, it is worth going into therapy to see why you see your lovability as defined by the shape of your penis. It is not, and if you think that, you are being fairly two dimensional. There is so much more to us. I hope you discover that before you walk away from a love like hers.

Hang in there.

Tim

[ferenfar]

Hey guys,

Thank you very much for your replies and encouragements. It really means a lot to me to know that someone actually listens to and understands my problem. Sorry for not replying for such a long time.

GS, I understand that I am quite lucky because I do not experience any pains and such. Although I was thinking that having congenital curvature leaves just one treatment venue: plication surgery. From what I've seen on the forum, in case of a big curve (such as mine ~50 degs) a significant penis length reduction is quite an inevitable side effect.

Now, Tim468 and GS, you guys are probably right when saying I should give it a try, but, honestly, I could never summon the courage to do it. I'm too afraid of being rejected for my physical queeriness, although I can also see that she did not care so much about my physical
traits (I'm not a good looking guy).

However, I'm pretty sure that no matter how much a girl cares for the heart and personality of a guy she cannot give up the physical pleasures of a relationship. I am very inclined to think  that I could not provide these to her (again, from what I've read on the forum and in general, a severe curvature such as mine makes intercouse very uncomfortable). I just wouldn't stand the thought that I cannot offer her what almost any other man can.

Yes, Tim I totally agree that there is much more to people, but still, sex is as, I see it, for most women if not all, an essential part of a relationship. Anyway I have just walked away I guess. We are now both in college, and studying in different cities. I talk to her sometimes, but for her own good, I hope she finds a boyfriend that treats her well and satisfies her. I want her to forget about me (atleast this is what I'm trying to convince myself that I want because my feelings tell another story).

I don't know guys. My efforts have always been directed towards growing accustomed with the idea that I would never have a relationship with a woman. It's really hard now to try and think that I could actually attempt such a thing. I do not want to fail. I hate myself when failing.

Thank you once again for your posts,
ferenfar

[Noway]

So I have peyronies disease. Im seeing a peyronies disease specialist. I recently met a girl and we both like eachother and were starting to get sexually active. I dont know how to tell her that I have peyronies disease. Shes 20 years old im 24. I cant have sex at all right now. Most girls I would just not talk to them ive lost alot of girls because of this disease. I like this one though and dont know how to tell her.

[Skjaldborg]

Noway,

The best plan is to be straightforward and honest. Tell her you have a condition that you're getting treatment for but that you're ready to fulfill her needs with everything else short of intercourse (there is a lot of fun stuff short of intercourse, trust me.). Make sure she knows that your condition is not her fault (i.e. that you're peyronies is a medical condition you have and has nothing to do with how attractive you feel she is). After that, be attentive, listen to her and make her laugh. If she sticks around, great. If she doesn't, there are many other women out there who will. Being a caring man will get you a lot farther with women than perfect erectile function, whatever that is. After all, there are millions of men with no ED or Peyronie's who can't handle a relationship because they don't know how to be a good partner. Learn to be a good partner and you'll be fine. I know this is hard to believe at 24 but experience has shown me otherwise and eventually you'll understand this as well.

Best of luck,

Skjald

[Noway]

Thanks alot skjald.