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Author Topic: Pain 24/7 in active phase?  (Read 561 times)

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Thomas708

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Pain 24/7 in active phase?
« on: September 25, 2020, 04:41:25 AM »

Hi everyone,

I had a sex injury almost 3 months ago and I am somehow in constant pain (details are in my other thread).
My urologist checked really everything and the only thing that was found is a small lump on the right side under my glans (on top of the right corpus cavernosum). The lump hurts when pushed on and looks like a few mm fibrosis on the ultrasound.

The docs sees different options (from likely to unlikely):
1) Slow healing injury with scarring
2) First Stage of Peyronie‘s, no bending/curving yet
3) Nerve damage

What is strange to me is the pain that is there 24/7 with strange feelings, slight burning, sometimes tingling and very uncomfortable feeling when e.g. walking and have it rubbing on the jeans. Pushing the lump is invoking the pain that could also have a sharp character.
Ibuprofen, diclofenac didn‘t help but also medication for nerve damage (Lyrica) didn’t do anything.

My questions: did you guys have constant pain in your active phase that made it even hard to sleep? In the beginning the pain was even worse with erection, this was getting a bit better the last weeks but is still there.
Is there a way to find out if a nerve damage is involved?

Thx and sorry for all the questions, I try to figure out what’s what in my case.
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bustedchubb

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Re: Pain 24/7 in active phase?
« Reply #1 on: September 25, 2020, 06:52:30 AM »

I experienced about the same exact thing in my early acute phase.  It was mostly constant, felt just like you describe, but did eventually get somewhat better.  I would say at month 3-4 is where I started getting periods of feeling more normal.  I still have erectile pain from the severe curvature, have some general discomfort, especially when walking and rubbing in pants.  Not painful, but definitely an uncomfortable feeling.

No OTC pain medication, including Ibuprophen or Voltaren topical helped in any meaningful way, either.
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43 Yrs old, Peyronies Disease Onset 11/2019, Diagnosed 1/23/2020.  Stabilized 6/2020.

Dent/Hourglassing distal and dorsal side, 15 deg bend left, 90 deg bend up, lost length and girth top half.

CoQ10, Propolis, L-Citrulline/L-Arganine, Pelvic Floor Therapy

Thomas708

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Re: Pain 24/7 in active phase?
« Reply #2 on: September 25, 2020, 09:41:43 AM »

Thanks for the response, really strange that no medication is helping in our cases.
I also have the impression that the erectile pain depends entirely on the sensitivity of the small nodule that I have inside the glans since the erection is somehow pushing it from below.

Will the plaque (or fibrosis in my case, in the end it's probably the same) stay sensitive forever? I have the impression is was not really improving in the passed weeks.

Where is yours located? I'm still trying to figure out if damaged nerves are somehow involved (maybe even directly inside my small nodule which would be bad).
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bustedchubb

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Re: Pain 24/7 in active phase?
« Reply #3 on: September 25, 2020, 04:02:41 PM »

My plaque is quite large at 2cm x 1.5 cm about 1/2" below the head on the top and wraps around distally to the left.  It first caused a left bend, but was taken over by the up bend of around 90 degrees.  Being that the plaque sits right under the nuerovascular nerve bundle, I would say nerves are definitely involved.  My pelvic floor therapist is pretty sure its effecting the pudental nerve.
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43 Yrs old, Peyronies Disease Onset 11/2019, Diagnosed 1/23/2020.  Stabilized 6/2020.

Dent/Hourglassing distal and dorsal side, 15 deg bend left, 90 deg bend up, lost length and girth top half.

CoQ10, Propolis, L-Citrulline/L-Arganine, Pelvic Floor Therapy

Thomas708

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Re: Pain 24/7 in active phase?
« Reply #4 on: September 26, 2020, 07:54:39 AM »

I see, so in your case it‘s for sure one of the big nerves that it puts pressure upon.
Strange that the pain faded after a few months, I wonder what has changed after that period.
I guess your plaque is still there, probably somehow the nerves arranged with it?
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bustedchubb

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Re: Pain 24/7 in active phase?
« Reply #5 on: September 26, 2020, 08:31:57 AM »

Yeah, I really don't understand it.  All I do know is that about 2 months of pelvic floor physio-therapy has significantly helped.  I recently stepped back treatment per the instructions of my therapist to see how I would do not having it weekly, and it is getting worse. So chronic pelvic pain syndrome (CPPS) is definitely can be triggered by this nerve pain.  I really hope you end up avoiding this and get better.  Most people do from what I see here and read elsewhere. 
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43 Yrs old, Peyronies Disease Onset 11/2019, Diagnosed 1/23/2020.  Stabilized 6/2020.

Dent/Hourglassing distal and dorsal side, 15 deg bend left, 90 deg bend up, lost length and girth top half.

CoQ10, Propolis, L-Citrulline/L-Arganine, Pelvic Floor Therapy

Thomas708

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Re: Pain 24/7 in active phase?
« Reply #6 on: September 26, 2020, 12:01:21 PM »

Yes, maybe it’s just a matter of time, but three months seems almost too much to me right now.   :(

What was your indication for CPPS or did you and your therapist just try it and succeeded with? Maybe that’s also something I need to consider that I could have due to continuously tightening the muscles down there because of the pain.
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bustedchubb

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Re: Pain 24/7 in active phase?
« Reply #7 on: September 26, 2020, 01:15:48 PM »

Things came to a head in late February for me, which was about 2 months after onset of Peyronies Disease.  I got all the symptoms of prostatitis, worsening of urine stream, burning, pain in the rectum/parenum, etc.  A real f'in nightmare.  After working with several uros, the last one finally determined that my prostate was fine, there was no strictures in the urethera, and noted that I had a spastic musculature in the rear.  From all of this he believed that it was pelvic floor related and sent me to physiotherapy.    I had done a lot of research on my own, even bought the "Headache of the Pelvis" book that talks all about CPPS/Prostatitis and how to help it.  So far it has been dead on, and my latest Uro is as well. 

As far as being three months and being too long, I know exactly how you feel.  I am at 9 months and definitely still dealing with both peyronie's pain and CPPS and it certainly has been a major depressor on top of the loss of sexual ability due to my 90 degree upbend.  All I can say, is do your homework, don't settle for where you are at, and keep fighting.  It may be a long haul, or you may get better next week, it is real hard to know. 
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43 Yrs old, Peyronies Disease Onset 11/2019, Diagnosed 1/23/2020.  Stabilized 6/2020.

Dent/Hourglassing distal and dorsal side, 15 deg bend left, 90 deg bend up, lost length and girth top half.

CoQ10, Propolis, L-Citrulline/L-Arganine, Pelvic Floor Therapy

Tobyg

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Re: ¿Dolor 24/7 en fase activa?
« Reply #8 on: September 26, 2020, 07:56:25 PM »

I also have the symptoms of "bustedchubb" in the pelvic floor, although they improved remarkably with kinesiology, some symptoms are related to fibrosis of the penis.
I also had your symptoms of peyronie in the active phase, I was in pain for 2 years until a doctor gave me dioxaflex b12, I also recommend pentox 600, 1 pill to see if it improves.
Try everything you can, don't let it progress.
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Tombone

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Re: Pain 24/7 in active phase?
« Reply #9 on: September 28, 2020, 04:53:59 PM »

Hi Thomas. How's it going? I also had an injury 5/6 months ago. My plaque or scarring is in the bottom of the glans like yours. Docs diagnosed it as scarring from injury and not peyronies. But it's all confusing to me. I don't really understand the difference.

Anyways, the pain is getting slightly better. Im not sure if I have much more curvature, maybe a bit, the scarring makes the tunica less flexible so that may be the case. The pain you describe is much like mine. I also suspect nerve damage as my pain runs all the way down the leg and back. Do you experience pain on the opposite side of the injury? I do. And what kind of pain do you have? Is it like burning sensations, stinging and muscle ache? Would be nice to compare.
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Slight curvature to the left when erect (10-15) More curvature when flaccid. Severe pain. Anxious. Got diagnosed with Peyronies Disease chronic phase in 2016. New injury 5 months ago. Been seeing several urologists wich all say its not peyronies. 38 years old.

bustedchubb

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Re: Pain 24/7 in active phase?
« Reply #10 on: September 29, 2020, 07:29:10 AM »

Tombone, my ears perked up reading about how your pain radiates down your leg, etc.  I noticed when I am flared up, I feel the similar sensation in the soles of my feet.  It's not at as strong as the pelvic area, but still noticeable.  Crazy how all that shiz is connected.
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43 Yrs old, Peyronies Disease Onset 11/2019, Diagnosed 1/23/2020.  Stabilized 6/2020.

Dent/Hourglassing distal and dorsal side, 15 deg bend left, 90 deg bend up, lost length and girth top half.

CoQ10, Propolis, L-Citrulline/L-Arganine, Pelvic Floor Therapy

Thomas708

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Re: Pain 24/7 in active phase?
« Reply #11 on: October 02, 2020, 04:58:57 PM »

Thanks for all your replies!
I had a first ESWT treatment today, but unfortunately it didn’t help (yet). I will do some more a see if it’s wasted money or not.  ;)

@bustedchubb: CCPS is an interesting approach since I’m also dealing with some rectal pain and muscle tenderness, but in my case that’s mainly because of the scar of an anal Fistula that was cut out via surgery last year, still feeling it. But the penis/glans injury seems not to be connected with it. The doc is quite sure it’s not connected and says that the small hurtful nodule/lump right under my glans is the source of the problem. But I’ll keep CCPS in mind for the things I can dig into.

@Tobyg: How did kinesiology improve it? It’s quite a large field that you can use for a lot of things. I tried diclofenac and it didn’t help, is this similar to dioxaflex? I think it has the same basis.
You had this kind of pain for two years? That’s really bad, I’m sorry man. You also had problems with sleeping due to pain? And it was only diclofenac solving it?

@Tombone: It really sounds very similar what we have. How big is your scar and where exactly does it sit?
My pain is very strange:
- it’s there 24/7 - feeling very uncomfortable all the time with some kind of tenderness
- it’s only on the right side where the scar/nodule sits
- almost daily with some episodes of a burning pain (e.g. when sitting or after a walk)
- sometimes tingling and even itching a bit
- sometimes feeling it down to the back/ass (along the pudendal nerve pathway I assume)
- hypersensitivity in the glans with sharp stinging pain, not with direct touching but more when putting pressure on it (I don’t know how to properly describe it, maybe an example helps: I was buying some groceries and the bag was slightly hitting the penis and it was a sharp pain) - I assume it’s when the small nodule under the glans is „pushed“ from outside

Somehow my feeling tells me it’s been an injury (fibrosis/scar on ultrasound) and a nerve is involved somehow (tethered, bruised, ...).
But what to do know?
I‘m taking VitB12, VitE & Tadalafil (the doc prescribed it) and plan to add some other supplements like Alcar and alpha lipoic acid that might help with nerves.
Also checking with a neurologist might be an option.

Let’s keep the discussion up, I will update regularly. Let’s see what solutions we can find.
Thanks so far guys!  :)
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Shafted

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Re: Pain 24/7 in active phase?
« Reply #12 on: October 02, 2020, 09:41:26 PM »

I just had my one year Peyroniversary.  What helped me the most with pain was switching to a ketogenic diet and doing intermittent fasting.  Simply getting rid of all the inflammation made a hell of a difference.
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Olive

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Re: Pain 24/7 in active phase?
« Reply #13 on: October 02, 2020, 11:48:00 PM »

I just had my one year Peyroniversary.  What helped me the most with pain was switching to a ketogenic diet and doing intermittent fasting.  Simply getting rid of all the inflammation made a hell of a difference.

That's kinda odd considering that high fat diet has been found to increase levels of inflammatory substances in the blood and boost production of substances called cholesterol remnants that contribute to the growth of cholesterol-filled plaques. Must be placebo, because it's against basic human physiology. Can you show some real research proven science backing your keto benefit claims or is it just your typical "oh yeah this one guy said so in that forum" type of bro science?

https://www.researchgate.net/publication/6300197_Low_Carbohydrate_High_Fat_Diet_Increases_C-Reactive_Protein_during_Weight_Loss
https://www.eurekaselect.com/87928/article#
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TonySa

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Re: Pain 24/7 in active phase?
« Reply #14 on: October 03, 2020, 12:57:16 AM »

Olive, just google it-lots of scientific studies that Keri and intermittent fasting are anti-inflammatory.
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PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

Olive

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Re: Pain 24/7 in active phase?
« Reply #15 on: October 03, 2020, 01:26:54 AM »

Okay, I just googled it and yeah, it seems that you can't fool human physiology with bro science.

https://www.sciencedaily.com/releases/2018/08/180828085922.htm

BTW, was this forum originally keto forum? I was thinking if it was then it explains why there's so many people with peyronie's here.
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TonySa

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Re: Pain 24/7 in active phase?
« Reply #16 on: October 03, 2020, 02:01:41 AM »

No, it wasn’t...lol
Google real medical science....please...Jeeze
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PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

jan.schaller1958

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Re: Pain 24/7 in active phase?
« Reply #17 on: October 04, 2020, 03:17:45 PM »

Tony, Olive doesn’t believe in real medicine. He’d rather get his medical info by cherry picking what he finds off the internet and  buying vitamin supplements off Amazon and Books written by nobodies‘
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PainfulPenisBand904

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Re: Pain 24/7 in active phase?
« Reply #18 on: October 04, 2020, 03:28:16 PM »

Very similar pain description. Burning/stinging feeling just under glans while erect or flaccid. Touching fabric of underwear or shorts is searing pain.

When erect feels like tearing skin as glans pushes through band about 1/4 - 1/3 from tip of penis.

Only comfortable position is when entire penis retreats into fat pad and almost looks like I dont have penis and just a foreskin in hanging (I'm circumcised).

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Shafted

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Re: Pain 24/7 in active phase?
« Reply #19 on: October 04, 2020, 04:13:59 PM »

Okay, I just googled it and yeah, it seems that you can't fool human physiology with bro science.

https://www.sciencedaily.com/releases/2018/08/180828085922.htm

BTW, was this forum originally keto forum? I was thinking if it was then it explains why there's so many people with peyronie's here.

LOL. Your first link is an article from 2007.  Your second link is to a site condemning low carb diets but yet has an advertisement for a 28 day keto meal plan.  C’mon you can do better.

I’ve done the research, applied what I learned, and got the result.  I don’t care whether you believe me or not, the research is out there.  Go read it.
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Thomas708

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Re: Pain 24/7 in active phase?
« Reply #20 on: October 08, 2020, 04:52:33 PM »

Hey guys,

let´s not argue about nutrition and food.  ;)

Personally I think food is something very personal. I have some allergies on vegetables and fruits and cannot eat everything. Dairy products are also a problem if consuming too much.
So I’m having a well balanced mix between fruit/vegetables/nuts I’m not allergic to, organic meat and carbs. No keto, not vegetarian oder vegan but somehow healthy and balanced.  ;D

@ PainfulPenisBand904: you’re having some kind of ring that is causing your pain? Probably putting pressure on the dorsal nerve?

@all: my urologist anesthetized my right dorsal nerve this week and my pain was completely gone for 3 hours. Now I have a appointment with a neurologist next week, it seems it’s really nerve damage that I have. The question is why it’s not healing properly.
My burning feeling is getting more intense right now and it’s quite unbearable. Cooling helps a bit, let’s see what medication I will get from the neurologist.
So probably not Peyronies but damage from the injury. Personally I think that almost all the Peyronies pain in the acute phase has to do with pressure on some nerve while the plaque is growing, but that’s just guessing...
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