First post. Worried and looking for advice.

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phatcat

Ok so i haven't talked to anyone about my condition including my doctor.   Mostly because of embarrassment but I'm also not sure if it's really peyronies.    

I'm 23 and have had significant curvature for as long as i can remember.  Within the last year my penis has been aching and the curvature has seemed to get worse.  Now when flaccid my penis is sore, and it's sore when i get an erection too.  

i stopped having sex/masturbating, didn't wear boxers at night to reduce nighttime erections for a month or so and the curve lessened significantly and my penis actually grew a bit. The pain was still there although less so.   The curve/pain came back after resuming masturbating regularly again.  

 I don't  have a health care plan of my own as I'm still in school and I'm not sure how to go up to my parents and say "hey i need to see a urologist about my curved penis, so I'm gonna need some cash to cover the bill."  Also since there isn't really a cure I'm not sure if it would even matter if i saw a urologist.

Anyway I'm just looking for advice.  i haven't read anywhere about improvements after resting (IE. not having sex masturbating, trying to control nighttime erections) like I've had.  Also i know that at my age this doesn't really happen or it's rare at least.  That's why i was thinking this might be something else.   Do i just rest my penis for a long time until pain and curve goes away?

I'm having a tough time and getting pretty depressed about this...thanks for this board though. glad there's a support community

DO

Just tell your parents something  is wrong. Your parents will
understand. Or just ask to see your regular doctor and know that he sees and hears many events that happen to patients!
But do not let it go unchecked... it is what you don't know that will hurt you. Remember your doctor works for you! He has a job because you go to him. Let him suggest what urologist for you to see.  

Hawk

This all sounds kind of vague to me.  If it has been curved for as long as you remember then that was a congenital curve.  But, then you say the curve lessened significantly when you stopped masturbating.  Regardless of what is going on, a good rule of thumb is if it hurts your penis don't do it. Unless there are lots of advances it is the only one you will ever have.

Also you are correct that if you have no knowledge of a significant injury then Peyronies Disease would be very unlikely at your age and even far more unlikely back as far as you remember.

Make sure you read MUST READ BEFORE YOU POST - Information for new members - Peyronies Society Forums  (especially the part about getting a base line measurement.  That is the only way you have a clue if things are going in one direction or the other.  No other typed of measurements will do.

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

0x5555

You gotta get to a doctor.

Peyronies is one condition that can cause pain in the penis but it's not the only one.  I think you're right to abstain from erections until the pain goes away.  Definitely talk with a doctor.

Don't be like me, I 'soldiered' through the pain and now I have it 24/7.  I am incredibly disabled because of this.   Do whatever you can to get on the mend ASAP and definitely go talk to a doc ASAP.

LWillisjr

Ok, if I understand correctly.....  The curve has always been there and the new development is the pain?? It is very likely that the curve is congenital assuming it hasn't changed any. The pain could due to some inflammation. Are there any other symptoms you have noticed?
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

phatcat

OK sorry if that sounded unclear/vague.  The pain is new. Like last few months new.  It's not very intense but uncomfortable and persists even when flaccid.  I realize the curve is probably congenital but the curve has also changed definitely.  That's what made me think Peyronies. The curve becomes more pronounced during periods of time when having sex/masturbating often.   The curve also goes down significantly after avoiding erections for a month or so.   I noticed this after it started hurting and i stopped doing anything with it for about a month.    

I know from reading other posts that this sounds strange.  I haven't read anything online that sounds like this so i thought I'd ask you guys about it.   Could this happen from overuse/rolling over in my sleep or something?

Thanks for the responses.  I'll try to see a doctor asap  

I'll try to get the curve measurements but I'm trying to avoid erections as much as possible while the pain is here.

Jonbinspain

This is really a question for those who have more knowledge of this subject. I was reading this and thinking, I suppose it's possible to have a congenital curvature, yet still develop Peyronie's too? I assume that's possible?

Hawk

The answer is, that since your symptoms are not crystal clear, there are many possibilities.  Because of that even a doctor would not be able to tell you the answer without an exam, and tests.  Certainly truck drivers, computer geeks, lawyers, and accountants, cannot tell you.  You need a proper diagnosis from a qualified physician.

A person with congenital curve could get Peyronies Disease.  If you have significant curve and lay on an erect penis at night it might possibly cause injury.  You could have a number of other issues up to and including a rare possibility of something serious like penile cancer.  How can we possibly know?  

I don' think it is necessary to send pictures of your erect penis to your mother with diagrams explaining your concerns.  Tell your dad you need to go to a good urologist because you have a persistent pain in your penis that is from no obvious injury and for which there is no good explanation.  Surly no parent expects their child to only seek medical attention for shoulder pain and to suffer mentally and physically from testicular cancer or an unexplained vaginal discharge.  Growing up is about realizing you must take responsibility for your health and not be ashamed of caring for all parts of your body.  This is not about bad, secret, shameful, behavior.  It is about a medical condition you have nothing to do with.

I should be done but since I want you to work through this I will add; If you insist on being vague and your family wants to be vague, just say I need to go to a good urologist because I have some persistent unexplained pain.  If your family shares your less than healthy embarrassment over such issues they won't ask questions.  They know urologists deal with urinary tracts from kidney, bladder, and urethra. If they ask then it means they are not embarassed and tell them "my penis aches significantly and constantly.  Its not normal and I need to see about this."

In 3 seconds, it will be over and like it never happened. What do you want your son to do when you become a Dad?

You are no longer a little boy.  You are a man.  Deal with this issue.

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

phatcat

Thanks Hawk.  Probably wouldn't have done crap about this if i hadn't talked to you guys.    Working on finding a urologist now.

Thanks for all the responses everyone.

Hawk

I'm glad to hear that.  Work on finding a good one.  Possibly that has listed Peyronies Disease on his list of specialties.  And go back and read through this again before your visit.  MUST READ BEFORE YOU POST - Information for new members - Peyronies Society Forums

If you live near any university hospitals of larger cities PM me and I will see if we can find any known good doctors near you.

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

phatcat

Went to a urologist.  He said there's not much to be done.  The symptoms fit Peyronies but plaque still hasn't developed which he said is strange since that usually comes before the pain  (a good sign??).  Doc said that in the majority of cases this will just go away after a while.  He ordered blood tests that I'm planning on having done tomorrow.

He said he could inject a bunch of stuff into my dick but warned against it.  That seemed weird to me considering he hadn't even done an ultrasound yet to confirm the diagnosis.

he also mentioned a new drug that might pass FDA testing soon. I think he was talking about Xiaflex. Does Xiaflex seem to work better than any current injections??

After reading more from the forum i wish i had asked him for Pentox.   I'm going back to his office in three weeks for an ultrasound.  

So my questions to anyone reading this:

Is three weeks too long to wait for an ultrasound and the chance to ask him about Pentox??

Do i need a prescription for Pentox? if so is there any way of getting around that or do i need to try to find another urologist who can see me sooner.   This guy i saw is ridiculously busy which is pretty frustrating.

-PC  

LWillisjr

It sounds to me that you have found one of the many urologists who can sort of diagnose Peyronies. But the fact he did so without any tests first seems a bit presumptuous to me. I don't know why doctors don't take the approach of doing some testing first and them making a diagnosis. Instead it seems they say "Oh, your penis hurts, yep you must have Peyronies". Seems very unprofessional to me. If you walked in and said "My knee hurts" would a doctor say "you must have a torn cartilage, let me start injecting you with steroids". I don't get it.

I don't think waiting 3 weeks is that critical, but you have no guarantee that he/she will perscribe Pentox 3 weeks from now. And yes in the U.S. Pentox requires a prescription.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

phatcat

So I've been to two urologists now.  The last one was involved in the xiaflex studies.  He told me it was probably a prostate infection because there was no palpable plaque (he did not do an ultrasound) and my penis was able to be pulled away from my body easily whereas most peyronies keeps this from happening.  He did say to stay on pentox and take some antibiotics then email him in 4 months.

He's completely wrong i know it.  Last night i started to experience buckling and i'm pretty sure I've been experiencing wasting loss of length.

I've been abstaining from sexual activity and not had any erections during the day on purpose since this started.  I've heard the use it or lose it so should i be masturbating sometimes?  I  tried to have an erection the other day but it was filling up on the bottom before the top and that scared me so i stopped.   I'm afraid masturbating will damage the tissue more but could i actually be damaging it by not masturbating?.

This whole thing started after i had taken a month or two off of all sexual activity ( no erections)  then i masturbated about 6 times i n one day.  the pain followed shortly after that. Did i damage the walls by not having erections then having a long day of erections?

I know the pentox can take two months to really kick in so should i wait for that?

i'm so confused and depressed right now.  I'm taking all the right pills (pentox, arganine, ALC, coq10) but no VED or traction because i'm afraid of damaging the tissue.  I have no plaque it just seems like the walls of my penis are getting weaker and weaker and its just getting worse.  

funnyfarm

Arent you getting an erection when you sleep at night ?  I think an erection is much safer than masturbating if you suspect an injury.

In my case the pentox began to loosen the scar right away, in fact after a few weeks there was no additional improvement (taking 2000mg/day).  I am sure a bend or deformity would take a lot longer, but the pain should decrease quickly.  If your problem is in fact congenial I am not sure if pentox will help or not.

When you are in tune with the unknown, the known is peaceful.

phatcat

Thanks for responding FF,

I'm getting erections at night.  Now More so than ever.  I'm getting no deformity other than shortening. Extreme shortening it seems. I'm down about an inch after the first month of this. does that seem unusual?? It's scaring the hell out of me.

 My curve is about the same as ever.  During the time before I injured myself I was not getting nighttime erections, or at least not noticing them. I never woke up with one in the month or so before injury and i wasn't having them during the day either.   That's why i wonder if it is a blood flow issue. Maybe i need to have erections during the day but not by masturbation as i'm sure that will make it worse.  

I tried getting an erection after my first post today and it just looked grey and unhealthy but much better than when i tried a couple f weeks ago.  Wondering if this is lack of oxygen.

That's the thing also.  You said pentox loosened the scar right away.  I have no scar.  At least not one i can feel.  his seems unusual too although from what I've read not unheard of.   That's why the last doctor i saw (the so called expert) said i don't seem to have "classic Peyronies."   So either he's wrong or it's something else.  

funnyfarm

Since you are getting erections at night, you are fine.  No need to get them in the day or masturbate for penile tissue health sake.

I think the use it or lose it thing gets over hyped sometimes.  There is still constantly new blood flowing into your penis even when it is flacid.   Perhaps if you did not get an erection even at night for months some atrophy or unwelcome changes might occur but even that is debatable and likely reversible when proper erectile function is restored.

Without palpable scaring I fail to see how pentox will help, and also it can have nasty (but temporary) side effects.   But if you have pain, it might be worth a shot. Overall, though I would emphasize patience and acting conservatively esp this early on.   It sounds like you are taking this hard mentally which I can understand.  But it is quite possible it might improve with no intervention, since you do not have any obvious tissue problems.  In the mean time it would be good to insure you are getting proper diet, exercise, sleep, stress reduction ect.  
When you are in tune with the unknown, the known is peaceful.

phatcat

Do you think an erection during the day could hurt??  I mean damage the tissue further?

funnyfarm

I can only speak from my situation:

erection = no problem
masturbation =  pain lasting days/weeks
When you are in tune with the unknown, the known is peaceful.

james1947

phatcat

Grey colour is a sign of bad blood circulation. You can see many people that have grey face and you can see is not healthy. I had gray face while smoking (heavy smoker for many years) and it become pink after awhile after quitting smoking.
With my penis it happened the same after Peyronies stuck. Using Pentox for more than a year now, the colour changed back to pink. Not yet as it was before Peyronies, but much better.
Pentox helps also many with the pain.
The uro that examined you with ultrasound didn't see scar tissue also?

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

phatcat

The doctor has not done the ultrasound yet.  It's happening next week.  both just did a manual inspection.   I think i'm developing plaque at the very base of my penis though now.  

Poor blood flow is scary, how soon should i see results from the pentox?  It's only been a week now but no reduction in pain.  it takes a while right?

phatcat

I'm trying a dean Ornish/ T Colin Campbell type diet on the extreme end of the spectrum (low sodium, fat, sugar). I will however keep sardines in the diet for the omega 3. Hopefully this helps circulation.

Noway

Phatcat

  It will takes at least 4-5 months before you see improvements with pentox. Forget this diet and get Cialis 5mg once a day would be better if you want good blood flow or get yourself a bathmate which its really good with a hot bath. Also I would suggest going to see a peyronies disease specialist not a general uro. Getting a lot of erections is healthy and good for your penis. If it hurts when you masturbate your masturbating too much or being too rough.

funnyfarm

Listen to Norway,  and this low fat diet will likely make things,  including your mental state, worse.   Your brain and body needs adequate fat intake.  
When you are in tune with the unknown, the known is peaceful.

phatcat

I don't know how i would get my hands on cialis.  i'm 23 no way my uro will prescribe it (he reluctantly prescribed pentox but said it's the same thing as aspirin).  i drove 2 hours both ways to see a different uro last week specializing in Peyronies Disease who worked on the xiaflex trials.  He thought it wasn't peyronies but advised i stay on the pentox.  Maybe i wasn't forcefull enough with my Peyronies Disease evidence.   Super frustrated right now

Noway

 Phatcat

Do you have a family doctor? Explain to him your problems my family doctor gave me Viagra to try.  

james1947

phatcat

I understand your frustration, I had it many times with doctors (any kind of).
Your uro may be an excellent uro but saying that Pentox is same as Aspirin is not showing too much knowledge in the subject.
Aspirin is a blood thinner, period.
Pentox is making the red blood cells flexible, so they can enter more easy even the thinner veins and supply them with oxygen, increasing the general blood flow.
Noway advice may work regarding Cialis or Viagra.
Keep being optimist. You are young :) and your body will react to treatments better than an old man body :(.

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Noway

phatcat

I personally would go with Cialis the 5mg is really convenient. Get on Cialis and pentox. ive tried them all Cialis Viagra, Levitra I like the 5mg Cialis once a day.

phatcat

Thanks guys,

I'm going to see my family doc tomorrow.  Mainly because i want blood tests done as is suggested in other parts of the forum.  I know i have been eating pretty poorly as of late and want to do better.  

Any suggestions for how to get my doc to prescribe Cialis??  I can't see it being easy.

@James, i agree my first uro is useless for Peyronies Disease.  He told me to do nothing, which is nothing new.  However his reason for doing nothing was that, there is such a "high rate of this resolving itself" that you shouldn't have to do anything.  WTF? Fed up with that guy but he did give me the pentox prescription so i don't want to challenge his ignorance too much while he's giving me the only thing shown to really help.

james1947

phatcat

Your approach is correct:
Quotedon't want to challenge his ignorance too much while he's giving me the only thing shown to really help.
Regarding your doc to prescribe you Cialis (5mg), tell him that even at your young age you have severe ED and would like his help to try Cialis. Myself buying 20mg, (no insurance) and cutting in 5 pieces to come out more cheep.

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Hawk

Here is some information from an abstract.  Levine Survey - Lack of understanding about Peyronies by PCP's and Uro's - Peyronies Society Forums We got permission to post it before it was widely available so I am not sure where the actual study is at this point.  The key factors are the misinformation physicians have about Peyronies Disease.  I reality it a rare for it to reverse itself.

Those ew cases that do likely were never Peyronies Disease or what is mistaken for reversal is just some additional plaque forming on the other side and straightening the bend and causing some loss of length.  The acute phase may then end and some uninformed patient or doctor calls it "reversed".
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

Hawk

This topic has been going for more than a month and a couple dozen posts.  It will probably soon be locked since in is way past introduction stage.
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