Fear I may have cavernosal fibrosis- need some input, please...

[Mike_VT]

SSmithe,

Sorry to hear of your troubles; so interesting that our reaction is basically the same to Kegeling. I have asked a few uro's and a PT about this particular phenomenon, and no one has any clue as to what gives. It sucks that there is so little one can do to relax the pelvic floor once it gets into a chronically tensed state.

That website belongs to Dr. Aaron Filler; over the past 8 months of trolling PNE forums, I've come to find that he has the worst rep of any of the docs who treat the issue. People paint him as all hype and very opportunistic. Do some digging on those PNE sites to find the lists of docs who treat it (a very short list, indeed).

I pray to god every day that I will be able to correct this issue without submitting to the PNE surgery. I was checked for athletic pubalgia by Dr. William Meyers in PA last month (don't have it... but it was he who thought to order the arthrogram); we discussed the PNE diagnosis, and I said to him that I was so reluctant to go down the road of treatment for it, as the surgery seems very underdeveloped. ""Underdeveloped" is putting it kindly," was his reply.

You may want to investigate a hip labral tear, man, especially if you're pain is predominant on one side. Apparently, it can share many of the symptoms of PNE; also, during the procedure to fix it, they often do a Psoas release, which has the effect of lengthening the pelvic floor.

[SSmithe]

Mike_VT,
The injury I attribute my Peyronies to was multiple "popping" noises from downward pressure on my penis during sex.  My doctor and I believe that I stretched and tore my suspensory ligament a few times, but did not rupture the cavernosa. The ligament still engages and gives me a 45degree erection, but it definitely lost a lot of its elasticity, and erections have since been increasingly more difficult to get or maintain.

My doctor also suspects that I injured myself (arteries, nerve) mountain biking, but I am not sure.

From the sound of your needing to stand all the time, you have much worse PN than I do.  For me it is a tingling / burning in my perenium and penis, very tight pelvic floor muscles, loss of sensation in penis, etc.  While I have yet to be diagnosed with PN or PNE, I believe it is a factor given my symptoms.  My doctor says that the PNE surgery is unreliable at best and suggests we try to avoid that route should I be diagnosed with PNE.  This website is of a nerve doctor in LA, California, who claims to be the best in the world...  www.nervemed.com/pudendal-nerve-entrapment-syndrome/pudendal-nerve-entrapment-syndrome

I do have palpable plaques, and am definitely experiencing a thickening of the tunica.  This constricts expansion during erection.  When I do a PC muscle squeeze, I get a second of growth, with instant fading... I hear that if you have any kind of pelvic floor muscle problems, kegels are not good to do, as that muscle eventually stops relaxing.

I will be seeing my doctor again in mid June and be able to comment more on the above after that visit.  Please keep us posted with anything you may learn... Hope is all I have at this point.
SSmithe

[Mike_VT]

A few more quick questions:

-Has anyone here had diffuse fibrosis diagnosed, and if so, how? Ultrasound?

-If I do have or am developing such... if the fibers are already in place- there's no reversing that, right? I mean, there's no turning those areas back to normal tissue- the approach would just be to stop the process, and make improvements "around it"?

-Is there any proactive treatment anyone here might recommend I add in? I've been especially intrigued by DMSO and heat therapy. I know that both of these have been extensively posted about here, and mainly it seems that the idea is to apply directly to plaques... but, as I said, I have no palpable plaques.

-Is scarring of the smooth muscle possible, and do you think this could be my issue? Has anyone here experienced or been diagnosed with this?


Thanks, everyone!

[Mike_VT]

Thanks for the replies, guys.

Jack, I have not yet contacted you just because I don't think I'll be able to swing a visit to your guy in Nashville any time soon. Right now, I'm fighting with my insurance co. to try and get out-of-network coverage to see a specialist in hip arthroscopy in NYC; last month, a hip arthrogram revealed that I have a siginificant labral tear, and the thought is that this could be impinging the pudendal nerve and causing my chronic pain. I would sure love for this to be the case, as this would be a much easier fix than if I have pudendal nerve entrapment. Worst case sscenario is that I have both going on... trying not to think too much about that possibility. Gotta take it one step at a time; the frustration lies in the waiting time between steps.

Ssmithe, yes, your range of symptoms does indeed seem to be similar to mine, save for that my penis is not narrower when erect... although my spongiosum does not get nearly as firm or full as it used to. Did your symptoms follow from some sort of injury?

Regarding PN and PNE, the sites to visit to read about the full spectrum of symptoms are spuninfo.org and tipna.org.

I suffer daily from non-stop low-level burning in my perineum and around my iscial tuberosities, exacerbated by bending/squatting/sitting. Not being able to sit is the absolute worst. I stand all day at work (I work a desk job, and had my desk raised to accomodate my problem); I take my meals standing or lying down; I haven't been able to go to the movies or any seated social event in months. Driving absolutely sucks, and I only do it when I have to, in short spurts.

As far as my penile symptoms, though I did have a bit of trauma to my penis itself, the facts that a) it will sometimes hang softly and normally (especially when lying down, or just after urination.... or, when it's in the "firm flaccid" state, if I play with it just a bit, it will soften), and b) I have no palpable plaques, make me hopeful that this is mainly a neuromuscular issue (with a bit of vascular interplay) that I will be able to correct. I think my pelvic floor is playing a large role in all of this. Now, when I do a pc muscle squeeze (kegel) when erect, instead of smoothly engorging, my penis jerks oddly, will engorge a bit, then my erection will immediately begin to fade.

What makes me nervous is being able to correct this issue in efficacious way; I have read that nerve dysfunction in any appendage can eventually cause negative, atrophic physical changes. I'm kind of in a Chinese finger trap situation: the doctor who diagnosed me with PN said to avoid all sexual contact and even arousal (I find this impossible), but I feel like my penile symptoms call for maintaining high blood flow to my member, which is why I am doing the L-Arginine/pentox/Cialis combo. After prolonged arousal or sex, I do find, though, that the burning nerve pain in my perineum is increased, likely due to the pelivc floor tension arousal creates.
What a mess.
 

[SSmithe]

Mike,
I have very similar symptoms as you, and I too fear penile fibrosis.  Although I have never been diagnosed with Pudendal neuralgia, I have many of the symptoms:
- cold numb penis (like after swimming)
- harder, and narrower when flaccid, narrower when erect
- loss of spontaneous or night time erections, weak erections
- loss of sensation
- more pain when sitting

How did they diagnose your pudendal neuralgia? I would love to know more about this, and how to diagnose.

I also have peyronies, and my palpable plaque runs the entire length of my dorsal vein / nerve area.  This may be causing the above symptoms as well. 

SSmithe

[jackp]

Mike

I had corporal fibrosis from penile injections of trimix and PGE1 for erections. The needle pricks cause fibrosis in my corpora's. That is why I tell men not to do this it makes matters worse.

If you can get a full erection and maintain it for intercourse, still have night time erections, etc. You probably do not have corporal fibrosis.

Mine was diagnosed during surgery for a penile implant.

You need a great Male Sexual Function Specialist like Dr. Milam at Vanderbilt. The trip to Nashville would be worth the peace of mind if nothing else. Send me an email to jwp104@att.net and I will tell you how to get a consultation.

Good Luck

Jackp

[Mike_VT]

Hello All,

In Septemeber of last year I sustained some trauma to my pelvic area, including my penis.
This resulted in a triple whammy of problems: penile pain and changes, pudendal neuralgia, and, it now seems, a significant labral tear.

Anyway, shortly afterward, my flaccid penis began to hang mostly in a hard, retracted state- as if I had just gone swimming in cold water. Sensation also became reduced, especially in the flaccie state. I could still get and maintain erections, but suddenly it took work to do so, whereas before I would get one from a stiff breeze or any passing erotic thought. My penis often felt cold to the touch.

I had a pelvic MRI in late September, and it showed symmetrical cavernosa. However, unbelievably, I suffere another insult to my member in early October- my gf nailed the top of my erect penis with her elbow, like a hammer on a tent spike. It was painful, but not terribly so, and I (perhaps unwisely) did not go to the emergency room at the time; there was no cracking sound, bruising or bleeding.

One wonderful effect of the pudendal neuralgia, at least for a spell, was hyperarousal, so there were a few insatnces in which I got erections that did not easily go away. Were they truly priapic? Well, not the ones I had when awake... but maybe it's possible I did have a priapic or near-priapic insatnce during sleep...?

I've seen several uro's, and they don't really know what to say. My regular guy can see the change in my flaccid, but has nothing to suggest. He palpated me for plaques, and found nothing. I was also tested for venous leak, and that was ruled out.

So here is where I am at, currently: about 60% of the time, my flaccid penis hangs in that hard, retracted state (at these times, I'd also note that the veins feel hard to the touch); 10% of the time, it hangs softly, but in a strange, "dissipated" state- seeming to hang smaller, longer and thinner than it used to; and the remaining 30%, it hangs pretty damn close to normal- soft, movable, foldable, feels fine. I note that this latter state seems to be in effect mostly when I am sitting or lying down, though it can happen standing up.

The one factor that most concerns me is what my penis now does upon detumescence from an erection.  I can get a full, normal erection, have sex and orgasm (though the pudendal nerve issue does create a bit of pain/sensitivity on the left side of the glans)... but when I detumesce, it does not happen smoothly. Instead, my penis lingers in an uncomfortable, tingling, half-hard state for a long while. During this time, the shape is strange- there are indentations and bends. The consistency is weirdly pliable, almost clay-like; if I bend it to one side, for example, it holds the shape. Also, for the next couple of days after sex, my penis just does not feel right, mainly existing in that firm flaccid state, with greatly reduced sensation and "presence".

I am currently taking pentox, 400mg 3x daily; a really high-grade L-Arginine powder; and one half of a three-day Cialis every three days (I am reluctant to take the full dose, given the nerve issue... nervous about inducing a true priapism). I also take a small boatload of anti-inflammatory and nerve repair-aiding supplements daily. For a little while, I was trying warm castor oil massage on my member, but I noticed that my sensation would seem even more reduced the next day.

I guess that there is a possibility that all of these changes could be manifestations of the nerve issue, and/or chronic pelvic floor tension... but I am very concerned that I may have or be developing cavernosal fibrosis (actually, some things I've read seem to suggest that cavernosal fibrosis can be the result of unresolved pudendal nerve injury). I understand that this is a different entity than Peyronie's- a diffuse internal scarring as opposed to palpable plaque(s). I wanted to see if anyone here has had direct experience of having it, and could talk to me about it, as I'm going out of my mind trying to figure out what's going on. I'd be interested in hearing if my symptoms are at all similar to what you experienced, and what your progression was like, including effect on erectile function. If you've had a firm diagnosis of cavernosal fibrosis, I would like to know how that was achieved, and what your course of treatment has been.

Thanks very much for your time in reading this, and thanks in advance for any and all responses!