Heya,
I'm 7 months into this nightmare. My problem is inflammation, hard/flaccid and flaccid pain. I am on Pentox (2x400) and supplements (Q10 and Ginger). For the pain, I am also taking 200mg Celebrex every day. According to my urologist I should feel lucky because I have no noticeable curvature yet. My pain is continuous, in the 7-8 range and always when flaccid.
Can you please share your stories about flaccid pain. How long did it last? Is there anything I can do to speed the healing?
I feel for you. My flaccid pain reduced considerably with abstinence and gentle traction by hand. I also think bromelain or nattokinase helped a lot since they are natural pain killers and blood thinners (do not combine too many blood thinners). Mostly I think traction helped however, since, in my theory at least, it elongates the damaged chambers of the penis to allow hematomas out and oxygen fresh blood in. VED has the same property, and if done with care can allow a more pain free day since your penis will hang lighter and more elastic.
I'm also a big fan of heat treatment and recommend making a microwaveable rice sock.
what is the science or at least logic behind the ginger?
Quote from: pey ron on May 23, 2017, 01:50:14 AM
what is the science or at least logic behind the ginger?
The logic is desperation. I read ginger is an anti-inflammatory food so I went ahead and got
some supplements. Screw peer-reviewed, placebo-controlled studies, I am past that.
With this level of pain I am willing to try whatever voodoo has worked for any of you guys.
Consider increasing the pentox?
A fair amount of member on here have had luck with using Acetyl L- Carnitine for pain. 500mg 3 times a day.
Also try Turmeric or Cucumin based anti-inflamatories. Stay away from the NSAIDs. Too many long term problems with taking them all the time.
Good Luck.
goodluck: thanks I'll try the A-L-Carnitine.
The pain goes up and down. Some days are almost OK, and some other days are really, really, bad. I haven't been able to find any pattern in it, except possibly that it is worse when I haven't had a good night of sleep. I wonder if lack of sleep, even if it is for one or two nights only, can make such a difference in an inflammatory process.
How would you d scribe the pain? Is it all over the penis or just at one particular spot? Does the penis look ok inflamed (more red etc)?
Spanish, Magnesium oil spray (Mag Chloride) will in my opinion helps with not only the pain but the added benefit of sleep.
I use both the spray and supplement with Ionic MC orally, ALC is definitely a help, well it helped me :)
I have used topical magnesium "oil" too.
Quote from: JayGould on May 27, 2017, 11:52:48 AM
How would you d scribe the pain? Is it all over the penis or just at one particular spot? Does the penis look ok inflamed (more red etc)?
It is not red. The feeling of inflammation comes from the hard/flaccid state. It is variable, it originates midshaft (general area, not from one particular spot.) Often, it is just local tenderness but when it is really bad it radiates to the pelvic floor. (I've had all sort of tests to rule out infections, prostate and bladder problems etc.) Pressure (eg against pants) makes it worse.
I am curious about your diagnosis, Spanish. If you don't have a curve, how do you know it's Peyronies? Do you have other visible symptoms or a plaque? Have you had an ultrasound?
I ask because your pain and hard flaccid *could* be a CPPS or some kind of Pelvic Floor issue. Especially because you say it radiates into the Pelvic Floor, which I don't think happens very often with Peyronies.
I know infections of the prostate have been ruled out, but 95% of CPPS cases (or Chronic Prostatitis or whatever doctors are currently calling it) are chronic and not bacterial. They are caused by some sort of dysfunction of the pelvic floor. I've talked to a few doctors who've admitted it's hard to diagnose or pin down when they don't find a bacterial cause.
Quote from: Toronto34 on May 29, 2017, 09:11:42 AM
I am curious about your diagnosis, Spanish. If you don't have a curve, how do you know it's Peyronies? Do you have other visible symptoms or a plaque? Have you had an ultrasound?
Yes I also wonder.
I had an ultrasound -> no visible plaque. I had also an ultrasound and x-ray of kidneys, bladder and prostate. Everything normal also. According to the doctor it is an inflammation of the tunica that may lead (or not) to curvature. All I can say is that it feels like the tenderness and pain originates in the penis. 95% of the time the pain is localized, and only 5% of the time it radiates to the pelvic floor.
Spanish do u get any bottle necking our hourglass effects ? before my peyronies i didnt have a curve but i was getting bottle neck effects
I'm also in the hard flaccid boat. I thought this is part of the disease first, but then noticed that I'm constantly tightening my pelvic floor through the day. As soon as I let go of the conscious thought to relax my perineum and anus, it will tighten up.
I noticed that pressing at the "nexus" of muscles there, between the anus and scrotum, will let the hard flaccid disappear for some minutes. It will bring relief to the burning pain and urethral pain (which is referred imho from the nerves in the pelvis, as pressing on the actual pain site does not lead to any pain). Also my urine flow gets better. Effortless would be the right word :)
So, I'm in to Yoga stretches for now and sitting on a tennis ball for 2x10 minutes daily.
My urologist thinks that the pelvic tightness has led to Peyronie's, as it did diminish erection quality and caused my penis to be in a vulnerable state during intercourse :/
Hey Tychy,
My pelvic floor therapist taught me to massage my pernieum (between anus and scrotum) to loosen it up and I think this has helped my hard flaccid as well some urological issues from a tight pelvic floor. She also got me started on the reverse kegels. I think treating CPPS along with Peyronies is key for guys who have both.
Hey Toronto34,
thanks for the heads up. I try to massage and stretch the perineum via the main tendon daily (the hard ligament that goes from the anus towards the penile muscles). It feels very tender sometimes. My main urinary issues are a bit of incontinence (coughing after toilet will result in few drops), stinging pain when sitting on toilet for a bit and it starts to flow again after some time and hesitation to let go of the muscles. The actual stream is okay if I'm relaxed, so it's most likely only a muscle dysfunction.
I feel this is a guarding reflex from the pain. I was always hyper in the perineum, as I now know. It got worse with the injury.
Actually internal massage helps the most, but it's a bit awkward to do and needs preparation. So this is limited to every one or two weeks. But it diminishes all symptoms to almost nothing. I'm working on my diaphragm breathing. Everything takes time :/
Wishing the best!
rjl88: no hourglass that I notice
Toronto34I read in the wikipedia that a hallmark of CPPS is post-ejaculatory pain. I definitely don't feel any such pain. What's your experience?
I've never had any real post-ejaculatory pain, definitely not with my most recent flare-ups. When I get any pain in my penis it's usually in flaccid state without noticeable cause, occasionally burning while urinating. From my understanding, CPPS can cause all kinds of symptoms and guys struggle with different ones as well as the severity of those symptoms.
I had post-ejaculatory pain around 2009 in terms of urgency though bladder was empty, Golfball feeling, etc. went away with Cipro, but imho due to anti-inflammatory effects. Semen culture was always clean.
Some of my hard flaccid "Peyronie's pain" is definitely because of CPPS. Most likely constantly irritated nerves in the pelvic floor. It totally goes away after internal release for some days, so it can't be actual inflammation, infection or something else.
Most tension "in there" is at the Puborectalis (part of the Levator Ani): https://en.wikipedia.org/wiki/Puborectalis_muscle
According to Wise & Anderson:
- one of the most important muscles in male pelvic pain
Can refer to tip of the penis pain, shaft pain, urethral pain and urgency, fullness of bladder
Can refer pressure / fullness in prostate
According to me: additionally triggers lower back pain in me
Have you considered a therapist that is a expert in pelvic floor dysfunction? I've tried many pill combos and felt not results. According to my Uro being on Pentox for Peyronies greater than 8 months is useless. I believe him with this I feel the same being off Pentox and on it. I find heat helps the pain, sometimes therapy, also nerve blocks??
Pain Free
CSM101
I never took Pentox, only ALCAR.
Just started traction, will have first session of shockwave therapy end of June. Can't start so many things at once, or improvements are not accountable to a single therapy start
But yes, these things are usually done by an osteopath in Germany (release and massage). Male pelvic floor manual therapists are rare. I won't do syringes to the back or pelvic floor. It has a risk of losing sensation.
Quote from: Tychy on June 05, 2017, 02:22:26 AM
Just started traction, will have first session of shockwave therapy end of June. Can't start so many things at once, or improvements are not accountable to a single therapy start
Let us know how that worls out. I had four sessions of shockwave therapy but it did nothing to ease the paim.
Will do! Traction had already some results after 4 days with a least two hours daily with the PF. Working up slowly to longer sessions. Think the tension was only around 200g, but better than having a flare up.
I'm looking forward to improved blood flow with shockwaves, mainly. Reduced pain is a bonus.
Also: get comfortable jockstraps. Those cloth cups are really comfortable, because they don't let a hard flaccid rub around the fabric.
[Full quote removed - Read the forum rules on quoting - Admin Les]
This is exactly what I feel. My urologist examined me and identified referred pain ... I get urethral pain and an uncomfortable raw feeling in the glans. This gets intense when my bladder fills and also when I need to defecate. It sometimes goes down to just a twinge but flares up to a constant pain especially where my cock bends in the dorsal behind the glans. It worries me.
Hey. Nice thread resurrection xD
I'm mostly fine now. I was treated for a small urethral infection by normal skin bacteria that went south. Hard flaccid is gone thanks to stretching, Osteopath and Lexapro. I may have a stricture that hurts after ejaculations, but this goes away after a few hours. It won't be treated unless peeing becomes cumbersome or is impacting daily life severely.
The Lexapro stopped central sensitization syndrome. I was hypervigilant. I never had so much ease of mind since 20 years. Wishing you the best!
QuoteCentral sensitization can lead to heightened sensitivities across all senses, not just the sense of touch. Chronic pain patients can sometimes report sensitivities to light, sounds and odors.1 As such, normal levels of light can seem too bright or the perfume aisle in the department store can produce a headache. Central sensitization is also associated with cognitive deficits, such as poor concentration and poor short-term memory.2 Central sensitization also corresponds with increased levels of emotional distress, particularly anxiety.3 After all, the nervous system is responsible for not only sensations, like pain, but also emotions. When the nervous system is stuck in a persistent state of reactivity, patients are going to be literally nervous – in other words, anxious. Lastly, central sensitization is also associated with sick role behaviors, such as resting and malaise,4 and pain behavior.5, 6
@spanish: a quick google search seems to dig up a bunch of papers that show how Celebrex makes fibrosis worse in a bunch of different tissues...
I would also keep to traditional pain medication. Ibuprofen (Advil), topical diclofenac (don't put it on the glans, though), Metamizole, Naproxen or Meloxicam (in that order!). Don't use aspirine or paracetamol. They are too weak in contrast to the pain reducing effects.