Diagnosis unclear; need help understanding symptoms?

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aj72

I don't know if what I have is Peyronie's.  A "non-Peyronie's" urologist wasn't sure, so he sent me to a specialist, who quickly shuttled me out the door -- "come back when you're chronic, and we can talk surgery.  All other treatments are crap."  (This was a university hospital doctor who said he was one of the top 4-5 Peyronie's experts in the state.)  He clearly wasn't listening to me, so I don't trust him.  

So -- can you please tell me if this sounds like Peyronie's?  I realize this community isn't made up of doctors, and no one fully understands the disease.  But I'm betting you're more able and willing than either doctor I've seen so far.  

My sincere thanks to anyone who weighs in.  

Age:  42.  
Problem started when:  my 'trauma event' was a medication, last January.  (It's early, but something has definitely happened.)  
Symptoms:  see below


DETAIL
-------

Trauma event:  

In January, I took a drug treatment called low-dose naltrexone (LDN), for something completely unrelated.  After several nights of this, I began to experience nighttime erections that felt -- uncontrolled.  Like priapism, but not to that extent.  I'd wake up in the middle of the night, the erection felt intense, and it wouldn't go away even after urinating, unless I walked around the house for 10-15 minutes.  I quit the LDN early on, but symptoms went on for a few more nights.  Finally I went to the ER, and coincidentally the abnormal erections finally dissipated in nights after that.  

I've now seen two different urologists since then.  Everyone has told me that since each session lasted last than six hours (as far as I know -- I was asleep most of the time), and because I didn't feel excruciating pain (just a soreness/discomfort) that it wasn't really priapism.  I'd be fine.  

But it's clearly when the curvature started.  And also the (prostatitis?) pain.  


Symptoms:

If this is Peyronie's, it's atypical.

*  erect curvature:  There's not really a single point of curvature; when erect, it generally hooks to the left, maybe 20-30 degrees (I haven't measured).  It's almost like the left half is a little shorter than the right half; you can actually see this at the glans, where the line between the glans and shaft slants in toward me from right to left.  This curvature seems to be the same every erection.  No pain seems connected with it.  

*  pain.  I've often had pain inside the tip of the penis, almost like in the urethra.  My first urologist thought this was prostatitis.  It doesn't really seem related to the curvature.  It tends to get aggravated by ejaculation, and then might ache the next day or two afterwards.  Early on it seemed to come on its own for a few days, but I've held off from any sexual activity, and now this pain is rare.  

*  plaque -- there is none.  Two urologists have looked, and I look once in awhile (although I'm not sure exactly what to feel for).  But, it's only been four months?

*  penile torsion when flaccid:  this is another constant.  It's always rotated counterclockwise (as it hangs, with me looking down).  Sometimes 20deg; rarely, 90 degrees.  Often 20-45deg.  Torsion has sometimes been worse within 12 hours after ejaculation.  

*  when flaccid, sometimes the glans seems to be another, sharper point of curvature, off to the left again.  But this comes and goes, and it's hard to separate this from the torsion.  Doesn't really seem to be a point of curvature when erect.  

*  very rarely, these symptoms appear (not at the same time):  mild hourglass; or pronounced blood vessels on the penis (moreso on the right side -- perhaps related to the right half seemingly being longer than the left?


I can't tell that the condition has gotten worse; but I also haven't objectively measured.  

I'm not in a relationship.  I generally/often have good night-time erections (seemingly moreso as a persistent result of that LDN in January), which I understand is helpful for Peyronie's.  

My first urologist scared the hell out of me about this disease, and sadly I responded by not facing it for 1-2 months.  And then I had to wait nearly two more months to see this university doctor, which itself was a waste of time.  


My questions
-------------

a)  Does this sound like Peyronie's?  Could it maybe NOT be Peyronie's?  
b)  What are the chances that sexual activity might aggravate my condition?  The Peyronie's "expert" implied that whatever happened to me in January was an injury that was in the process of healing, and this could even all eventually go away on its own.  Could ejaculation be aggravating that injury (hence the pain)?  I realize it doesn't normally aggravate Peyronie's, but my situation seems unusual.  

I'll keep studying the forum... I've seen James' survival guide and will take some preventative steps.  Again, thank you.  

NeoV

Sounds like a clear case of Peyronie's, or at least it sounds just like mine.
Any injury that results in any deformity, is "Peyronie's", or something just as serious.

The amount of scar tissue, whether palpable or not, doesn't matter. Sounds like your "specialist" was an idiot. Surgery is a last resort, find a different specialist who can help you get a VED, Pentox, and low does Cialis. Honestly, I was told the same thing by my urologist back in the day, I left feeling awful, and Peyronie's got worse and worse over the next 6 or so years. If you are injured, pentox will help prevent scar tissue from forming. Other supplements may help, but for now just be very careful with your penis.

My case was just like yours! Tortion and bending after ejaculation., Which finally resulted in hour glassing of my erect penis as well. These acute bouts of post ejaculatory bending will become chronic, do not let them happen if possible. I also have pain in the tip of my penis which I finally realized was due to the urethra having a tear from most likely a tight frenulum. You can check inside your urethra to see if that's the case.These symptoms often came together, bending, and pain in the urethra. I have recovered almost completely, but it isn't perfect. Sometime's I too wonder what the hell is going on, but I can't find any other explanation other than Peyronie's.

Lessening the frequency of masturbation was crucial for my recovery, perhaps because it was an injury being aggravated, and these injuries take a long time to heal. That doesn't mean you can't though, it is important to have good erections, so when you choose to masturbate or have sex, do so carefully. After I started taking more care things started improving. Never masturbate a less than hard penis, and do not clench your pelvic floor or PC muscles to achieve orgasm. Be careful, make sure you are filled out completely and relaxed.

Secondly, if you have a high erection angle, try to lower it through stretching some of the ligaments down there. I don't understand why, but this was basically the thing that rid me of my deformity and post-ejaculatory symptoms. I started a lot of stretches at a downward angle and also would slowly and gently bend my erect penis down from the base (never bend the erect penis, only the ligaments). I also used VED which helped a lot even just after one use. The result is no more hinging, and hardly any flaccid or erect deformity. It hangs full and straight down, and my erections are perfectly straight with no hour glassing once I give myself some time to fill out. In the back of my mind this has me wondering, is or can Peyronie's be, a disorder affecting the ligaments much like Dupuytren's? I will never know.

If you are going through the same thing I went through (Peyronie's or not), there may be hope, but you're going to have to be patient. Experiment with gentle manual stretching, but basically try to let the penis heal. I can't vouch for pentox personally, but do buy a VED. For a long time heat helped me a lot. You can make a microwaveable heat pad with a sock and rice. Just take an old sock fill it with rice and tie it in a knot, and there you go. Microwave it for a minute or or so and you have a heat pad for your penis. Alternatively, you can try ice or cold to see how your deformity handles it. Massaging the base of the penis and the perineal area may help with deformity too, since it can get the blood moving. Try standing wide squats too, which help stretch the pelvic floor.

Sadly, and injury to the penis is just not something urologists know how to treat. You will probably go through an "active phase" of change and inflammation, followed by improvement due to natural erections re-"modeling" the penis over time.

Good luck, feel free to PM me or any of us and check around, ask many questions. If you can see another specialist, do so.

-V



aj72

V, thanks for taking the time to put all these great thoughts down.  

I'll make an appt with another urologist.  I've found one name so far on this forum, who might help.  I'll also work on getting a VED.  Lots of other things here to study.  

I just got done looking up a lot of penile anatomy so I could understand your post. ;-)  I got a little lost in your paragraph about 'high erection angle'... I'm trying to understand how you stretched, and whether the same things apply to me.  I bend to the left since the 'trauma event' -- what direction did you bend?  So IOW, did you basically stretch against your bend?  And in my case that means, stretch to the right?  

If I understand these ligaments properly the penis rests inside one of them as if it were a sling.  If I'm bending to the left, is it possible that the left side of the ligaments is somehow shortened?  

Is the pelvic clenching thing because doing so puts strain on the ligaments?  Or for what reason?  

Finally...

> These acute bouts of post ejaculatory bending will become chronic, do not let them happen if possible

I assume you mean, the way to keep it from happening is to do all the things you mention here -- not by not ejaculating.  

Thanks again.  

NeoV

The way I avoided post ejaculatory bending (that I think is caused by damage to the penis), is by making sure my erections were completely solid and using great care. Also by engaging in sexual activity less, and making sure not to clench my pelvic muscles while doing so. I don't know how this relates to ligaments at all honestly.. a lot of my symptoms are a mystery to me.

It's possible that the ligament has become fibrotic, or the bucks fascia, as I understand, and it would cause it to indent your penis causing a bend to the left. If you follow the ligament with your hands you will see that it attaches at different parts of your penis after coming out from onside your body.

The details I mention here are extremely meaningful to me yet are mostly speculation. It's what worked for me, and what continues to work. You may get a lot of other opinions here as to why these things are true, but for me they are real factors.

I stretch against the curve but in a straight direction. Away from my body and down towards the floor, both to the left and to the right alternating. Sitting on the edge of a chair will enable to you do it. Be very careful, stretching can cause permanent damage and cause Peyronie's. While I believe in it's effectiveness, and studies on traction back up my views, I have to always warn people of the dangers of any penile manipulation. As with VED, be careful and do things gently.

Focus your stretches on the ligaments and scar tissue, not on the penis itself. You can achieve the best ligament stretch by stretching the penis under your leg or butt, as strange as it sounds.

-V

LWillisjr

Quote from: aj72 on May 22, 2014, 06:44:56 PM
My questions
-------------

a)  Does this sound like Peyronie's?  Could it maybe NOT be Peyronie's?  


In reading your post is was not clear to me. Is the curvature a recent development, or have you always had this left 30 degree curve?
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

aj72

V, based on your earlier recommendation I went ahead and did some stretching, and not in the way you later described.  Hopefully I didn't do any further damage -- I had no idea it could do so.  I pulled straight to the right against my body, to the point where I clearly felt some tight stretch on the left side, although not painfully.  

I don't feel ligaments anywhere... I was surprised to find out there were any ligaments down there.  I have yet to find a diagram that adequately shows it.  I'm going to have to figure it out.  

LWillisjr, for the most part, this all appeared immediately after the 'trauma event' in January.  With one caveat -- I've seen the torsion before.  It's happened after ejaculation, very rarely over the last few years (maybe 3-5 times ever).  But there's never been curve during erection before January.  All the symptoms described here began sharply after that event.  

LWillisjr

Trauma means some type of physical damage. So I don't think your trauma event was taking the meds..... But could have led to some type of damage while you were erect, rolling over in the night, etc.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

aj72

Interesting idea that rolling over could have been involved.  

My understanding is that priapism, without any physical event, can cause damage leading to Peyronie's.  And priapism is typically med-induced.  But at the end of the day, all I know is that those erections led to the symptoms; I picked the term 'trauma' for lack of any other word to describe that event.  

alwaysreading

Hey AJ,

So what you're describing is basically my story, except that my injury was more acute and I was also on meds. I too was initially worried about priapism but after being told of the symptoms of low-flow priapism---which is the kind that causes fibrosis---I'm fairly sure it wasn't. Low-flow, or ischemic, priapism is extremely painful and quite obvious I've been told. However, I woke up twice in the night with an erection, and the second time it felt a bit more rigid than my night time erections usually are. I was worried I was sleeping through an erection, and so after it subsided somewhat I rolled over on my stomach (since I don't usually get erections on my stomach). I'm not sure if this caused the damage or if I was having a high-flow priapism from damage that had already occurred, but it is an odd coincidence and so I thought I'd mention it. It is definitely correct that damage can be caused by a rapid change in the pressure on the corpus cavernosa (the chambers that fill with blood during an erection), and so rolling over on an erection, or putting a lot of pressure on the penis when blood flow there is strong, could do some damage.

So I really doubt you had low-flow priapism. You may have had high-flow priapism. I'm not sure a single event of high flow priapism could cause damage, but it may have been a response to an injury that just happened to not be very painful (a lot of people on these boards simply "woke up" with a bend one day). Did you have any pre-existing injury? It could have been that you had a pre-existing injury (albeit small) and the prolonged erections, though short of priapism, re-injured you and caused the inflammation reaction.  

LWillisjr

Quote from: aj72 on May 25, 2014, 08:53:30 AM

My understanding is that priapism, without any physical event, can cause damage leading to Peyronie's.  

I've been on this forum and researching for almost 6 years now. I do understand that extended periods of time with priapism can lead to erection problems, but mostly due to trapped blood and oxygen starvation to the chambers within the penile tissues. I have never heard of priapism leading to Peyronies disease.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

james1947

As an introductory, this topic is locked.
Please continue with specific subjects on the adequate boards for better knowledge accumulation.

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