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[guyincog]

It's been almost a year and 4 months for me.  I still have daily pain and getting erections makes it worse.  I have mostly hourglassing and I can even sort of see faint lines where the (large) scar tissue is.

I tried pentox but had a pretty bad reaction to it so not keen to try it again.  Am taking a drug called Amitryptoline nightly that seems to help but I don't want to be on medication forever.

What the hell is going on here.  I thought the 'active' phase was only supposed to be for several months.

[james1947]

My active phase lasted more than two years and started again after three years.
Regarding pain, I just can say that Pentox helped many people on the forum.
Have to begin with it carefully, 400gr in the morning during meal (eat half of the meal, take Pentox, continue to eat).
This what I have done as veteran forum members adviced me (George).
Maybe somebody have other solution for the pain.

James

[pizzaman]

My Peyronies started around March of this year. The combination of curcumin and serrapeptase helped with the pain, but Trental (pentox) helped more. 800mg per day did nothing for me, but there was a big different going up to 1200mg recently. It's very important to take Trental with meals to avoid/minimize side effects.

[jbvertigo]

It only took about a month for the Pentox to help with the pain but the curvature has continued.  I was hoping it had stopped.  What kind of side effects?  Here are mine.  I am very cold and my skin hurts.  Feels like I am getting the flu.....it is too painful to sleep without pain pills.  I too hate taking drugs but this is the only thing right now enabling me to continue having sex....what is a guy to do?

[james1947]

jbvertigo

I don't understand your post. You are writing:

It only took about a month for the Pentox to help with the pain

And then:

it is too painful to sleep without pain pills

How long you are on Pentox? How many per day?

I too hate taking drugs but this is the only thing right now enabling me to continue having sex

You are taking Erectile Dysfunction drugs for intercourse you mean?

James

[Nelson]

Hi All

Sorry to bring up an old post but I'm finding my pain has significantly increased in the past month or so, despite starting Pentox/COQ 10/ACL at this time, plus various NSAID's.

Its peculiar, the Urologist, who was outstanding in bith his manner and his knowledge if Peyronies thought it was a mild case, and the Ultrasound didn't show any palpable plaques but since then the pain is going through the roof. Not on erection, minimal if any pain on erection, but solely in the flaccid state. Sort of a burning, knife like/pins and needles sensation. And now I'm experiencing pain in the lower abdomen, as well as the upper legs.

Ive tried Celebrex Ibuprofen etc and no improvement, only increased pain. Everything feels inflamed, yet I've cut out sugars/fast food etc and instead have now have a diet consisting of grass fed quality meat, fruit Kiwi Fruit, blueberries strawberries etc) and nuts such as almonds or walnuts. Minimal dairy, cut out breads, yet inflammation feels like its out of control.

Have another appt with my urologist for the pain next week, he's suggested via text Lyrica for poss nerve pain or alternatively he's currently receiving training in shockwave therapy specifically for Peyronies pain.

I've read through a lot of the forum threads, great source of info and feel like I'm doing everything right. I understand theres blood tests I can request specifically to measure inflammation markers? Is curcumin worth a shot? Powder or cap form?

Sorry for all the questions guys but the pain is becoming quite debilitating.For those guys suffering from long term pain, well my hats off to you.

Thanking all

Nelson

[Thisismyusername]

Nelson, (EDIT: just realized we have talked by PM earlier so I probably already told you this, but I'll leave the post here for others to see.  Excuse me for forgetting it was you I talked to, I'm quite exhausted lately).

What you are going through sounds very similar to my own case.  My classic peyronie's symptoms are mild, some mild curvature and hourglassing and slight erectile dysfunction.  No palpable plaque, and the urologist did an MRI and found nothing wrong with my penis.

However I have had pain in the flaccid state since the beginning.  It took almost a year for the pain to go away, and it did so only after completely abstaining from masturbating and sex for a long time.  Still after a year and a half the pain comes back after any sexual activity.  I also developed pain in the perineum and upper legs, which I found out is related to pelvic muscle tension.

If you are like me, your body reacted a little differently than other people's to whatever penile injury you had.  The pain might be due to inflammation or scar tissue, but like me, you haven't responded to any of the standard medications.  Lyrica might help, but in my opinion the two best things you can do for treatment are 1) stop all sexual activity (I know this is extremely hard, especially if you are in a relationship like me) and 2) see a pelvic pain physical therapist to see if your pain is muscle related.  They will check your muscles hands on and if tension is a problem, which given your symptoms I strongly think it is, they will help you learn to relax the muscles. 

The muscles tense partly because of an injury and pain in the penis, which is natural reaction, and partly from the stress this condition puts us under.  Learning to relax the muscles can significantly reduce your penis pain and probably eliminate all pain in other parts of your body. 

Urologists are good for some things, and useless for others.  Urologists are useless for pelvic pain, trust me.  Don't even listen to them.  See a physical therapist who will understand how to view things in the right light.  You might want to read the book "a headache in the pelvis" and see if you can relate to what is described in that book.

Don't hesitate to get in touch with me.  I've been going through this for a long time and it's hard but I've had some progress. 

[cs65]

I've had Peyronie's for almost 8 years now, and I still get episodes of flaccid pain.  Only thing that has helped me (quite well) with the flaccid pain is the combination of Lyrica and Clonazepam.

[Nelson]

Thanks guys i really appreciate the input.

CS65 the doc mentioned Lyrica on the phone - did you notice any major side effects from this drug? Sorry to hear about your long term issues.


Thisismyusername I know you've been going through a hard time mate and didn't want to bother you. But the idea of putting up with this pain long term is terrifying. I'll def be in touch. Thanks for your support.

I do feel pins and needles pain in my legs as well as my lower abdomen - I think I'll see if the urologist will agree to me getting some blood work done, and find out where this inflammation is coming from.

Such a mysterious and distressing disease.

Would love to start VED and/or traction but not in this state. Then again I hear they can be beneficial for pain...I'm stumped.

[cs65]

Nelson - sorry for not getting back to you... been off the board for awhile.  Lyrica actually provides some positive side effects for me.  More alert and I'm able to think more clearly.  Also puts me in better mood in dealing mentally with pain issues.  No negative side effects at all for me.

[Thisismyusername]

Pins and needles pain in the legs and abdomen could be from pelvic muscle tension, as I've repeatedly mentioned already.

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