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[sumac]

Hello everybody,

I will start by saying I am 27 years old and single, and am hoping to have an appointment with Dr. Levine at the end of this month.  I am currently trying to figure out my insurance situation, but have spoken with his office already.  I have not yet been diagnosed, but am hesistant to go to a general physician or urologist in the meantime.

I have a large crater-like indentation in the left and slightly under-side of my penis, perhaps described kind of like two dime-sized ovals overlapping (think peanut or venn diagram shape maybe?).  It runs lenthwise along the shaft, is at least 2-3 cm or more in length, and about 1 cm or so at the widest, although narrower for most of it.  It feels kind of like a ridge that is deepest in the middle, although with distinct edges.  It is visible most of the time, painful to the touch, and also can be felt when penis is flaccid, erect or semi-erect.  I guess I have had it for quite some time, and my penis has often felt very sore in that area for as long as I can remember, but unfortunately I had never heard of Peyronie's or scar tissue in the penis until a week or so ago.  I never have been aware this might even be problem, even though it has probably been developing for years.

I will also say I have had literally EVERY bad habit you could think of, although I cant recall ever suffering one traumatic injury.  But for 15 years or so I have masturbated prone, LOTS of friction from clothing - I have never used lube, dry-humped with girlfriends in jeans for HOURS, etc.  I also have masturbated at least once every day, but sometimes as many as 5 or more times a day.  I had never really been warned about any negative effects of this, only that it was "healthy, normal and can help relieve stress!"  After extended periods of overuse, I have noticed that area becomes extremely inflammed and sore.  This has been occuring for quite some time, but I was only able to identify the exact location and cause recently.  I had just been assuming any soreness or pain I was experiencing was totally normal, as it tended to refer and radiate around my entire genital area, I assumed it was simply from overuse or something.  At least until I recently located the exact spot where it was coming from, and learned that permanent tissue damage was a possiblility.  Now I can tell that pain is actually coming from only one area, as it hurts only when I touch right there and nowhere else.

I have not yet noticed any curvature or shortening.  I usually wake up with at least 75% erections.  I can get a solid erection, and maintain it for as long as needed but only with continued physical stimulation.  I don't believe the internet boards posting about about "death grip" or "porn-induced Erectile Dysfunction" describe my symptoms well at all, as I have never had any problems performing during actual intercourse or any noticeable loss of feeling or sensation.  (although I haven't had consistent sex for at least a year, so I may be in for a surprise.)  I do however notice significant hourglassing or similar effects while my penis is in the semi-erect state.  But it straightens out during full erection.  There is no significant pain caused by an erection itself, unless I accidently touch the indented area, which is ALWAYS very tender and sore.  Even brushing up against my boxers on that one spot can cause a jolt of pain.

I have since stopped these harmful masturbation habits, but have still been doing it VERY gently with lotion once every other day or so, I suppose just to relieve stress because I have been so anxious.  (and remind myself that it still works, for now at least ...)  Even this still seems to increase inflammation and pain, so I am considering stopping altogether until I can meet with a good Dr.  I just don't want to make things worse somehow by going from full speed to a screeching halt too fast.

I guess I am not looking so much for treatment advice in terms of oral supplements, as I have read a lot about these and will consult with a Dr. about whether or not I should start Pentox ASAP.  I guess I am mostly hoping to see if anybody who has been actually been diagnosed or had a long battle with this condition can offer me some hope or better perspective on my situation from a psychological standpoint?  I have been feeling pretty hopeless and scared while waiting around to see a specialist, basically imagining every worst-case scenario.  It may sound paranoid, but I'm also somewhat concerned that since I have been keeping this area in a constant state of inflammation for so many years, if I stop masturbating or having sex for even a month or so it will develop into more hardened plaque.  Has anybody else found themselves in a similar predicament, or do you guys think I should just try to stop thinking about it altogether until I can see a specialist?  Does my situation sound serious enough that it may cause me major problems at some point down the line, regardless of how I treat it now?  I've read a lot about small "bb sized" plaques but not so much about large crater-like ones.  This indentation takes up a concerningly large percentage of one side of my flaccid penis, and I am extremely worried that it will cause some serious deformation in the future. 


Any responses are very much appreciated, I know there are tons of new posts sounding exactly like this, but few possible answers to offer...   I have also tried discussing this with at least two other people in my life including an ex-gf I am still very close with, but despite trying to be helpful and supportive, I feel as though me taking out my fears on her only makes things worse for everybody.  She is convinced that this is some rare disease, and I shouldn't worry about it since I don't have Erectile Dysfunction or a diagnosis yet.  I don't think that is the case at all.  I'm hoping maybe this will be a more constructive place to discuss my concerns and how to handle them?


By the way, after reading this forum heavily the past week, I will definitely try to remain active and provide updates regarding a diagnosis or progression.  I absolutely cannot believe the lack of information in both the general public and the medical community regarding this condition.  I wish I had been warned about it in health class, although I'm sure there isn't one person on this forum who cannot say the same.  For me at least, most of the sexual awareness lessons were on preventing STDs or pregnancy.  I have to admit, I always thought masturbation was a perfectly safe alternative to sex!  I have the utmost respect for the forum members and everybody who posts about their situation, because the only way we can try to learn more about it is by sharing information.  This is quite a hand to be dealt no matter how old you are, and I truly admire the way many of this forum's members talk about and handle their respective hardships.  I hope to continue to use this forum as a resource to learn how to better handle mine in a similar manner.


Thanks for reading!

[QuackAttack]

Sumac,

Being anxious and worried is very normal. Don't let it control you though. The hourglassing  is something that you should monitor. I think you will see the effects of peyronies roughly one month or less from the point of injury. I noticed my first curvature about one month post injury and I didn't even know I had injured my package. Dr. Levine is the best in the USA, so you are fortunate that you are close enough to be treated by him. Xiaflex is a good treatment that has reduced my curve from 50 degrees to about 20 degrees and Levine is experienced with Xiaflex nad Varapamil injections. He will be able to tell you for sure if you have peyronies. Until then, don't stress and I would suggest backing off the jacking off. It appears that a lot of people on the forum got here that way. I traced my injury to twisting a little bit during intercourse with my wife.

[sumac]

Quack Attack,

Thanks for the quick response.  It's great to hear you wear able to see improvements with Xiaflex, it's definitely quite reassuring to be reminded that there are in fact treatments available that can help.  I have only read good things about Dr. Levine.

I suppose my biggest fear is that rather one suffering one injury, I have been continuously injuring it for a very long time, and I won't be able to know the full extent of the damage until the injury stops.  And given how quickly it seems to develop, that's why I'm so paranoid that I could wake up any day now with even worse pain or Erectile Dysfunction.   

Anyhow, your response was reassuring and I really appreciate you taking the time!

[Paolo]

Thanks sumac for taking the time to register, it only takes a few minutes 

We all have individual stories to tell and this is how we all move forward to a hopeful resolution by communicating our ideas and input together 

P.s
I always use fleshlights and lubrication when masturbating, always holding an 80% erection level for safety.

[QuackAttack]

Smac,

The most recent research shows Xiaflex earlier is better because the plaque hasn't calcified.

[Steveo]

Personally given your age and the fact that you have what seems to be a large band of scar tissue forming slowly over an extended period of time, I would start with gentle one-cylinder VED sessions every day to get oxygen to the area and to prevent it from suddenly contracting and severely bending your penis.  2-3 cm by 0.5-1 cm is a very large band of fibrosis that will some day cause problems.

[razen]

I also masturbated prone from when I was 8 years old to about 19 I have what looks like a 40 degree curvature upward and it sucks to think that I caused it by masturbating incorrectly without knowing.

[Bubba dawg]

I also masturbated prone from when I was 8 years old to about 19 I have what looks like a 40 degree curvature upward and it sucks to think that I caused it by masturbating ......

So many on here have guilt for no scientific reason. Most every man in the country has rough masturbation and sex. The majority never get peyrones. Could be genetics. No one really knows for sure what causes peyrones . No reason to feel guilty. Too much of this gave it to me or that gave it to me. Trauma can easily happen during sex and masturbation. Young people get it. Old people get it.  Most people dont get it