21 here, just diagnosed

[Crimson]

Well...I'm still breathing, and that's good.
But really, I've been perfectly healthy for the most part of this short life I've lived. So what do I get? Nailed with a disease that threatens my manhood! Hubris I guess.

Anyways I've just been diagnosed by a urologist to have Peyronies. The urologist gave me a sample of Cialis and told me to take half a pill a day for 6 weeks until a follow up appointment. I had played a soccer game the day before, and although I didn't notice any trauma to my junk the next morning I woke in extreme pain. I didn't even want to get out of bed. However I did, went to urgent care and the folks there were completely baffled. After a trip to the E.R. and another baffled doctor eventually I just decided to give it a week or so to see if it would get better. The pain when I'm not erect did subside, however I did notice two lumps, one at the base and one halfway up the shaft. Finally I saw a urologist and he told me that I have Peyronies, a disease that no one knows the cause of, there isn't a definite method of treatment, and there is no way to know how severely it will progress. Holy crap, to me cancer sounds more optimistic. At least I could act upon it.

I would greatly appreciate any advice for there are a few things I don't quite understand.
1) This first one is really just for curiosities sake, if this is commonly speculated to be caused by an injury why do so many men that have this condition/disease all have the same plaque build up in the same area of the penis? I would figure different injuries would lead to a plaque build up in different areas of the penis. Instead I read about this build up occurring in the exact same place for all men with the condition.

2) Is this disease a problem with my bodies ability to heal itself? What dietary changes do I need to make?

3) How severely should I expect my penis to curve/hurt when erect? Right now I hardly notice a plaque build up, although I was just diagnosed and the morning of the event happened about a month ago. The lump at the base of my penis is waay more defined than the plaque, in fact it took the urologist to point out the lump halfway up my shaft. At first I thought this was a tweeked ligament or tendon, as the lump at the base reminded me of what happened to my hamstring when I tore it. I really thought I had damaged my suspensory ligament (of course my knowledge in this area consisted of google searches)

4) Should I refrain from sexual activity? Ejaculation is painful, otherwise my erections are painless. I don't know whether I should work this as I would a muscle injury, or whether the fewer erections I experience will reduce scar tissue build up.

5) What prescriptions should I ask my primary care physician to prescribe me aside from the half tablet of Cialis that I'm taking?

Any questions that ya'll can answer would be greatly appreciated. I don't really know how I feel about this diagnosis. Mainly I'm just pissed off But this seems like a friendly community to ask! Thanks.

[james1947]

Crimson

First I would like to say that one having Peyronie's should be much more optimistic than one having cancer. Peyronie's in NOT life threatening disease while cancer is.

You are right that this forum is a friendly community, the people responsible for that are making a big daily effort not to let negative people to change that. We are here to help each other as best as we can, getting advice from some of the forum veteran members that have huge knowledge accumulated in years of fighting this disease. We have rules that place a few needed limitations. If you will read the "Read this first" you will see the rules don't affect any constructive posts and questions. I suppose you read the rules already as your first post was in the right place.

Your uro is right. They don't currently have a definite method of treatment, at least not from the uro's point of view. Based on that he gave you just Cialis for 6 weeks.  It shows in my opinion that his knowledge in Peyronie's is limited, like most of the doctors me and other forum members meet.
From the treatments point of view people on this forum have tried many ways to combat this disease, many with good results. There are also ongoing trials for some medication that are giving hope. If you will invest time and read the forum you will understand much better.

Is this disease a problem with my bodies ability to heal itself? What dietary changes do I need to make?

The answer I suppose is yes. Have many theories on the subject, I injured my penis more than once when I was younger and I didn't develop Peyronie's. My proposal to you is to get a basic check up including blood sugar and testosterone, even though you are young.

What I would like to say about no.3 questions/statements is that no one knows how Peyronie's will develop. To fight the Peyronie's,  the goal is to stop the progression and to reverse it, especially that you are in the early stages of the disease, as soon as possible get on Pentox and VED (my private opinion). Be careful with VED not to over pump it and make more damage. The main rule is if you feel something not comfortable stop pumping. Pentox helped and helping many in reducing/eliminating the pain

No.4 I will say do NOT refrain from sexual activity. More is better, just be careful not to injure yourself. My private opinion, others may think different.

No.5 See my answer above.

Do not hesitate to ask any questions.

James

[Hawk]

Crimsom,

I am sorry you have this challenge thrust at you, but I am glad you are here and that you are not a couple years along with this before educating yourself.  

I would only add a couple points.  I would take Advil to fight inflammation at this stage until you get your hands on Pentox (Pentoxifylline) which requires a prescription (for off label use).  If you go to this link https://www.peyroniesforum.net/index.php/board,10.0.html you will see 3 articles mid way down the page that will give you some support for asking your urologist for Pentox.  If your doctor will not prescribe it after your best efforts, I would find another urologist that better understands Peyronies Disease and who will work with you. That whole board is a great education.

Do not overlook the basics like rest and stress reduction. Many men have developed Peyronies Disease during bouts of stress so rest is important.  A big plus you have going for you is that you are young and with help your body may recover. Become a student on anti-inflammatory diet. Step one is sugar restriction.

There may be some controversy during this early stage but in general, blood flow and oxygenation is healthy but do not do anything that hurts or that is considered rough treatment.

One of the best ways to become educated on any subject of any  board on the forum is to read the Highlights posted at the top of that board.

Although the Vacuum Erection Device (VED) is a great aide, I would consider traction, especially at this stage and especially if you get good blood flow from nocturnal erections.

Good luck!  Now do some reading and then post any questions that come up under the Boards/topics that deal with that issue.

PS: In answer to your one question, I do NOT think most men develop plaque (scar tissue) in the same area.  Men here report plaque in the base, the head, in lumps on all areas of the penis and in hourglass patters around the shaft not to mention through the erectile tissue itself.

[Crimson]

Thank you both for the feedback. I most definitely will become more acquainted with the forum and it's various topics of discussion.
I had taken ibuprofen and iced what I had supposed was the injury immediately after it happened, although I stopped once I was told it was a disease. I suppose I'll start doing that again.

I will say do NOT refrain from sexual activity. More is better, just be careful not to injure yourself. My private opinion, others may think different.

I'm a little nervous, I haven't talked to my partner yet as I'm in college and am worried about the path of the relationship I'm in. I suppose I don't know how to bring it up, but the consistency of my semen definitely has changed so I don't know how my girlfriend will take that or what that even means. I haven't read anyone else having this problem so I don't even know if this is associated with Peyronies, although I assume it is since the change occurred the exact same time.

Until I pick up a prescription of pentoxifylline from my doctor I will go back to the ibuprofen and ice combo.
Thank you very much!

[Crimson]

I would take Advil to fight inflammation at this stage until you get your hands on Pentox (Pentoxifylline) which requires a prescription (for off label use).

Do not overlook the basics like rest and stress reduction. Many men have developed Peyronies Disease during bouts of stress so rest is important.  A big plus you have going for you is that you are young and with help your body may recover. Become a student on anti-inflammatory diet. Step one is sugar restriction.

There may be some controversy during this early stage but in general, blood flow and oxygenation is healthy but do not do anything that hurts or that is considered rough treatment.

Although the Vacuum Erection Device (VED) is a great aide, I would consider traction, especially at this stage and especially if you get good blood flow from nocturnal erections.

Thank you for the direction and I will take all of this to heart.
I may feel a little weird immediately purchasing a VED or looking into traction. I will have to spend some time on those forums and educate myself a bit further. Although I'm also nervous that later I will have wished I had started this type of treatment before any curvature is noticed.
Again thank you, it's not easy to discuss.

[Hawk]

...the consistency of my semen definitely has changed so I don't know how my girlfriend will take that or what that even means. I haven't read anyone else having this problem so I don't even know if this is associated with Peyronies, although I assume it is since the change occurred the exact same time

Semen is produced in the prostate and the prostate is not affected by Peyronies Disease.  It is expelled into the urethra during ejaculation.  The urethra and the penis which surround the urethra contribute nothing to the content of the semen so I can see no connection with Peyronies Disease.  If the urethra is somehow restricted then urine flow and ejaculation might be affected but that would not be typical with Peyronies Disease.  If you are certain the semen has changed I would discuss that in specific terms with a urologist.

[Skjaldborg]

Crimson,

I got this at 29 so I understand the difficulty this diagnosis brings to young men. Hawk's and James1947's advice is spot on: go to a urologist who will prescribe pentoxyfylline and keep yourself healthy all around. Keep running, playing soccer, or whatever it is you do for exercise.

As far as sexual activity goes, use lots of lube and don't do anything that can cause injury; reverse cowgirl is off the menu for now. You are not obligated to tell your partner anything if you don't want too since Peyronie's is not communicable. You can just tell your partner that you got hit with an errant soccer ball and need to go easy during sex for awhile. I am not saying that Peyronie's is anything to be ashamed of, rather you are in control if you want to talk about it or not.

Best of luck,

Skjaldborg

[Crimson]

Well, just an update. It has been more than a year since I was diagnosed.

Been feeling better and I seem to have stabilized for the most part. Slight curvature. Occasionally feel discomfort. I'm wondering if this is the disease slowly progressing. The semen also is back to normal.

Really worried about telling my girlfriend. We seem fine, but sometimes I feel like I can't keep it up although I would like to (as in I'm still feeling horny). Is there any reason this would be the case?
Of course, other times I just find myself simply thinking about the condition and that's enough to ruin the moment.
I feel like it is negatively impacting our relationship.

I did what you suggested Skjaldborg, and alluded to the soccer injury. Stopping shy of stating something is wrong. The disease label seems pretty hard to wrap my head around, especially since there really isn't much about it. For now I think of it as an injury, although I know that keeps me from properly taking care of myself.

I've told my parents that it's completely better and they shouldn't worry about it. I feel like it's the wrong move but I was sick of telling them about how I was doing.

Anyways, cheers and again I'm thankful for the existence of this forum. When feeling inquisitive or even emotionally down it certainly helps to peruse the threads.

[james1947]

Crimson

Good to here from you, especially because you have good news's
Your post will help also other young people, much easier for them to understand a young man that older ones
Could you tel us what kind of treatment you have done?

James

[Jonbinspain]

Crimson;

My advice would be to get back to your Uro. You ideally need Pentox.

Loss of erection can have many causes. In Peyronies cases, it can be caused by a loss, or di munition of sensation, or there can be a blood flow problem. Both of these are caused by the plaque. Pentox will help with blood flow, and Cialis should enable you to stay erect long enough to keep your lady happy. If the curvature doesn't worry her, you don't have too much of a problem.

[damian]

Your erectile dysfunction is most likely psychological. Try not to think about it.

[inkhorn]

Crimson- Well you do sound more optimistic, then you did a year ago. Like James said this cussed disease, while a drag, isn't as bad as cancer, cause you will live to romp another day.Did you ever go through with the VeD or traction over the last year?Regards Inkhorn

[rellisacct]

Ushtipack,

I'm starting to wonder if you even have Peyronie's? You sent me a PM the other day suggesting that my condition could be psychological. Seriously? I've had this crap for 11 years and I know what it's like to be a stud and what it's like when scarring fills up the penis. I have before and after pictures if you would like to see that this isn't all in my head and that there are significant physical issues, which are easily visible in pictures. Scarring keeps the tissue from expanding and also can cause veinous leakage, both of which I have and I'm sure many others. To suggest that people's condition on here is "just psychological" is demeaning.  

[jackp]

Crimson

Go back and talk with your dad, let him know what is going on. Be honest with your girl friend, if she cares about you it will not matter.

I know a lot of people think for young men this is psychological but it is not. I know several young men that have peyronies with hour glassing and ED. Even many doctors told them it was all in there head and come back when you are 40.  Once they found the right doctor and got a proper treatment they lead a very active sex life. There is one story on my blog.  I have posted the treatment for the many stages of peyronies in the surgery section under Healing Broken Hearts.

Good Luck to you. Let us know how you progress. If you would like to chat send me a PM or email.

Jackp
http://jackp-penileimplant.blogspot.com

[damian]

"Of course, other times I just find myself simply thinking about the condition and that's enough to ruin the moment." - sound pretty psychological to me, Relli.
I'm sorry if I offended you with something.