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Welcome to Dr. Landon Trost - Directly answering member questions in the "Medical Professionals" section below the Treatment boards. https://www.peyroniesforum.net/index.php/topic,16512.0.html

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Author Topic: Let's talk about flaccid pain here  (Read 1029 times)

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orriw

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Let's talk about flaccid pain here
« on: September 23, 2021, 01:18:44 PM »

Hello, as far as i can tell a minority here but still a big amount of people has flaccid pain rather than pain during errection.
IMO this is worse because you can have it for many hours or even days after using your penis.

I get the physiological answer that errection pain causes, because scar tissue gets stretched, but scars dont stretch so it causes pain.
But flaccid pain is weird.

Maybe anyone with flaccid pain can write  their history here, and their thoughts about it, progression of the disease and what doctors told you.
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25y, injured at 21 :/

Reinjured late 2019 when having sex with weak errection.
No curvature, but rotation of the base to the left about 30degrees
Main problem: chronic flaccid pain.

Trying different stuff now

orriw

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Re: Let's talk about flaccid pain here
« Reply #1 on: September 23, 2021, 01:22:46 PM »

I'll make the beginning i have flaccid pain for a long time after sex or masturbation, but also after a night with many nocturnal errections. If that happened i wake up and know "well crap i will have pain again today".
I have no plaques and probably not even Peyronies Disease but a very slow healing wound, maybe chronic neuropathic pain.
Tried a lot of things in form of supplements and Pentox, no effects. Stayed away from VED or Traction because i feel it will make things worse for me bc i likely have not Peyronies Disease.
The only things that helps is avoiding any errection. Getting hard and then losing it seems to be the main and only trigger to start the pain and thats also the key to prevent it.
I am visiting doctors as many times i can and "spam" them with my sorrows and hope to find someone to help me.
Because i have the pain for 3,5 years i dont think it will go away anytime soon.
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25y, injured at 21 :/

Reinjured late 2019 when having sex with weak errection.
No curvature, but rotation of the base to the left about 30degrees
Main problem: chronic flaccid pain.

Trying different stuff now

nemo

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Re: Let's talk about flaccid pain here
« Reply #2 on: September 23, 2021, 01:52:29 PM »

I strongly suspect much of the flaccid pain we experience is nerve related.

In this Peyronies Disease flare I am experiencing (I'm a little over 2 months in), I feel like the ache I feel most days is nerve related, as it never (or rarely) seems to be directly at the site of the scar/plaque I'm dealing with, but rather feels like it moves around between that area, the juncture of my leg and penis/testicles, and sometimes even can be felt down in my foot. Even when I'm experiencing it, if I move my penis or lightly touch the area of the scar, it doesn't feel painful. And again, this leads me to believe it's a nerve in the penis that's being irritated by the scar, and causing migrating sensations all along the nerve pathway.

For the first several days I experience this, I really worried it represented a a growing scar or progressive damage underway, but after several weeks, the scar does not appear to have grown or gotten worse, nor has my indentation gotten worse. And when I get an erection, there's no 'pain' ... so again, if the scar was causing the sensation itself, I would think that would get worse when being stretched under erection.

I've also experimented with taking Ibuprofen or Paracetamol (Advil and Tylenol) and these do nothing for the sensation I'm feeling. These drugs typically don't help nerve pain, so this too supports my notion that it's nerve pain at work.

All this leads me to believe (and hope) that the aching I feel is, in fact, nerve pain, not the scar itself growing worse.

Just my thoughts based on only my experience.

nemo
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50 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred in 2013. Have now begun a third episode in 2021. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline.

bustedchubb

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Re: Let's talk about flaccid pain here
« Reply #3 on: September 23, 2021, 02:45:46 PM »

I am in total agreement with your hypothesis, nemo.  I also get that feet sensation / pain phenomenon. 
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44 Yrs old, Peyronies Disease Onset 11/2019, Stabilized 6/2020.

Dent/Hourglassing distal and dorsal side, lost length and girth.

Underwent Plication with Dr. Brian Christine in Birmingham, AL on 6/17/2021. Fully recovered with no complications.

orriw

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Re: Let's talk about flaccid pain here
« Reply #4 on: September 24, 2021, 06:08:43 AM »

I strongly suspect much of the flaccid pain we experience is nerve related.

In this Peyronies Disease flare I am experiencing (I'm a little over 2 months in), I feel like the ache I feel most days is nerve related, as it never (or rarely) seems to be directly at the site of the scar/plaque I'm dealing with, but rather feels like it moves around between that area, the juncture of my leg and penis/testicles, and sometimes even can be felt down in my foot. Even when I'm experiencing it, if I move my penis or lightly touch the area of the scar, it doesn't feel painful. And again, this leads me to believe it's a nerve in the penis that's being irritated by the scar, and causing migrating sensations all along the nerve pathway.

For the first several days I experience this, I really worried it represented a a growing scar or progressive damage underway, but after several weeks, the scar does not appear to have grown or gotten worse, nor has my indentation gotten worse. And when I get an erection, there's no 'pain' ... so again, if the scar was causing the sensation itself, I would think that would get worse when being stretched under erection.

I've also experimented with taking Ibuprofen or Paracetamol (Advil and Tylenol) and these do nothing for the sensation I'm feeling. These drugs typically don't help nerve pain, so this too supports my notion that it's nerve pain at work.

All this leads me to believe (and hope) that the aching I feel is, in fact, nerve pain, not the scar itself growing worse.

Just my thoughts based on only my experience.

nemo


This is very interesting you mention this, and that you always feel it in your foot sometimes! Holy crap i thought i was the only person i could never figure out what causes the foot sensation, suspected sciatica, herniated disc and many other things but always felt that there was the connection to the penis but of course its hard to tell how so.

Today i had another doctor appointment and we did another ultrasound with no result other than some very little plaque near the pain spot. He described me Lyrica now for neuropathic pain and i am very interested how that goes because he also believes it can be nerve damage and my brain is by now used to this pain and "prepares" itself for the pain when there is actually no source anymore. When Lyrica has no effect he said we do an MRI and possibly operate the little spot but he told me about risks and not to expect to much with the operation.

I feel like us guys here are in a smaller circle on this forum and should maybe stay in contact with message or in this Thread. I start to believe some of us have no Peyronies Disease and should stay away from thigns like Pentox, traction...

You mention you have it for 2 months. Please keep me updatet if you see any progress. As a guy with 3,5 years in this i can tell you if i was you i'd limit my masturbation and sex now and try your very best to let it heal now and eat good, quit smoking. You have probably better chances to recover now. Because if you dont you will find yourself maybe in the same situation like me and suffer from this chronic, and have many, many bad days and moments! Let it rest, give it a break and talk to doctors about nerve damage. Please keep me updatet. You can PM me or we write on this thread. And seriously i'd say think twice about traction or VED if you show no clear Peyronies Disease symptoms of progression so far.
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25y, injured at 21 :/

Reinjured late 2019 when having sex with weak errection.
No curvature, but rotation of the base to the left about 30degrees
Main problem: chronic flaccid pain.

Trying different stuff now

nemo

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Re: Let's talk about flaccid pain here
« Reply #5 on: September 24, 2021, 06:49:46 AM »

It's wonderful that you have a prescription for Lyrica. That could very well tell you (and us) if this is indeed nerve pain. Let us know if the Lyrica helps resolve this pain.

Keep the discussion here in this thread - no point in going to PMs as this information would be of benefit to everyone.

Thanks,
nemo
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50 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred in 2013. Have now begun a third episode in 2021. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline.

nemo

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Re: Let's talk about flaccid pain here
« Reply #6 on: October 02, 2021, 06:55:44 AM »

So, orriw, how's it going on the Lyrica? 

Have you noticed a reduction in the "nerve pain" we are suspecting? 

Please update.

Regards,
nemo
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50 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred in 2013. Have now begun a third episode in 2021. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline.

orriw

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Re: Let's talk about flaccid pain here
« Reply #7 on: October 02, 2021, 07:03:21 PM »

I have  ot yet received the recipe i will be able to buy the Lyrica in about a week  and then the doctor said i need to take it for a few weeks before i can expect some results. So, expect my follow up feedback in about a month. I will post here.
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25y, injured at 21 :/

Reinjured late 2019 when having sex with weak errection.
No curvature, but rotation of the base to the left about 30degrees
Main problem: chronic flaccid pain.

Trying different stuff now

orriw

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Re: Let's talk about flaccid pain here
« Reply #8 on: October 02, 2021, 07:12:33 PM »

By the way i also have some weird tingling in the leg ocassionally that started at the same time the penis pain happened. Usually it happened synchrone, meaning whrn i had penis pain my leg wad tingling, now this can happen on its own. I had an lower back MRI, did so many exercises and stretches with no results, and i am thinking now maybe nothing works because its also perceived neuropathic pain. Hopefully Lyrica can work this too. Its the weirdest stuff ever i am going thru.


I am hoping that i ( and all else on this forum) can laugh one day about these days because we will be healt and pain free. Really praying. Theres a saying in my country, translated: " the healthy person has 1000 wishes, the sick person only one."  Now i can understand the meaning very well and recognizr that a healthy painfree body is the best gift you can have ever and you need to protect it.
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25y, injured at 21 :/

Reinjured late 2019 when having sex with weak errection.
No curvature, but rotation of the base to the left about 30degrees
Main problem: chronic flaccid pain.

Trying different stuff now

nemo

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Re: Let's talk about flaccid pain here
« Reply #9 on: October 03, 2021, 12:21:52 AM »

As I understand it, the nerves in your penis and scrotum all connect to a nerve (pudendal) that is in the lower back, which also connects to nerves in the leg and foot. So, I think it's quite understandable that nerve issues in the penis would be felt throughout that area. I'm noticing the same myself, from the foot, to the knee, to the scrotum, to the base of the penis, to the scar area itself - all of these have that nerve/ache sensation at various times. Sitting seems to sometimes aggravate. But then walking makes the foot ache, up into the scrotum, etc. Nothing intense or "painful" - just a nerve sensation.

Any time it's really noticeable in the penis, it makes me really nervous, but if I then get an erection, there's no "pain" in the penis, so I'm really starting to be convinced it's not the scar "getting worse" - it's some nerve entanglement causing issues.

Do keep us posted - I'm interested if Lyrica will turn off the nerve pain issues.

nemo
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50 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred in 2013. Have now begun a third episode in 2021. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline.

pixeleight

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Re: Let's talk about flaccid pain here
« Reply #10 on: October 03, 2021, 12:50:30 AM »


New to the forum. I'm approaching a year of (initially intermittent) pain with erections. Over the past few months I'm in pain when flaccid, too. Pain nearly constant, now. Erection is possible, but far too painful to maintain long enough to ejaculate.

I know I have Peyronies Disease because I've had an indentation at the base for awhile (I had no idea what it was for months), and recently I've developed a slight bend just at the corona of the glans. Urologists have been useless: down-playing my symptom of erection pain initially, not sure of Peyronies Disease despite palpable plaques, ordered MRI (totally normal), and then no advice because no curvature during the initial work-up. I've been taking circumin for about a month after Advil led to significant tinnitus. Curvature just started in past month, progressive flaccid pain since then. After discovering this forum and reading a bit, I just decided to get Rx for Podox yesterday (strong side effects of tremor/nervousness this morning after noon 400 mg dose yesterday).  Ugh.  I'm starting low-inflammation diet. I'm in my 50s, I'm miserable with this, and I have very little hope.
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orriw

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Re: Let's talk about flaccid pain here
« Reply #11 on: October 03, 2021, 02:36:13 PM »

As I understand it, the nerves in your penis and scrotum all connect to a nerve (pudendal) that is in the lower back, which also connects to nerves in the leg and foot. So, I think it's quite understandable that nerve issues in the penis would be felt throughout that area. I'm noticing the same myself, from the foot, to the knee, to the scrotum, to the base of the penis, to the scar area itself - all of these have that nerve/ache sensation at various times. Sitting seems to sometimes aggravate. But then walking makes the foot ache, up into the scrotum, etc. Nothing intense or "painful" - just a nerve sensation.

Any time it's really noticeable in the penis, it makes me really nervous, but if I then get an erection, there's no "pain" in the penis, so I'm really starting to be convinced it's not the scar "getting worse" - it's some nerve entanglement causing issues.

Do keep us posted - I'm interested if Lyrica will turn off the nerve pain issues.

nemo

Did you have some success with pudendal nerve exercises? But it makes sense, the nerve gets irritated at one location ( penis ) and send signals down along its pathway. I hate it actually does because it means more annoying areas tingling.
Were you diagnosed with Peyronies Disease or not? I believe now by90% i dont have Peyronies Disease based on the progression of my symptoms. On the other hand i have some deforimity ( torsion of the base ) that speaks for Peyronies Disease.
I hope Lyrica will do wonders. Else i am trying some other pills and if none helps i am gonna find a doc that will do some surgery.....

@pixeleigt you are "lucky". Try being in ur 20s.
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25y, injured at 21 :/

Reinjured late 2019 when having sex with weak errection.
No curvature, but rotation of the base to the left about 30degrees
Main problem: chronic flaccid pain.

Trying different stuff now

Curvekiller94

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Re: Let's talk about flaccid pain here
« Reply #12 on: October 12, 2021, 06:04:35 PM »

Please let me know if lyrica works for you. I have a twist/indent near my base as well as some hour glassing and a bit of an upward curve. I have pretty constant pain. Pain after sex, pain from sitting, pain from standing.

It is just as Nemo described it’s like there is a point where my leg meets my testicles and my penis and it radiates to my leg and sometimes to my foot.
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26 y/o
sex injury that gradually got worse
Hard flaccid, Indentation bottom left close to my body,  mild twist left
28° up 28° Left
official diagnosed peyronies w/pain
Pentox, restorex, l-arginine, cq10, NSAID, tramadol(as needed)
Gf is supportive

Heallingway

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Re: Let's talk about flaccid pain here
« Reply #13 on: October 15, 2021, 04:52:20 PM »

I had the same injury at 70%-80% erection I injured my self.

The pain is more prominant while flaccid (sore like pain)

I have a scar that is trying to heal now (not visible ultrasound / fmri) I think after few weeks if this does not go it can be some nerve thing. Others scars healed. This one is taking its time I guess.

Have you considered ESWT for that ? Or vitamin B supplements?

I am very sorry to hear your story but you are not alone I have nights when I could not sleep so you are not alone.
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nemo

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Re: Let's talk about flaccid pain here
« Reply #14 on: October 16, 2021, 04:18:19 AM »

orriw, I read Dr. Trost's response to your question with great interest!

I was pleased to see he pretty much confirmed what I was proposing as the possible cause of our migrating penis/crotch/leg/foot sensations as more likely to be nerve involvement than actual Peyronie's damage getting worse.

This in itself is good to hear, as it's easier psychologically to deal with this sensation (even when it feels like it's coming from the penis) by reminding ourselves: "calm down - it's a nerve sensation."

That said, I don't think I'll be able to feel comfortable having penetrative sex until this sensation is gone, as every little tweak and twinge I feel - especially when I have an erection - is panic inducing. I don't think I could truly enjoy sex with this sensation present, as I'd be worried I was increasing the damage in the area of scarring. Until it's gone, it's pretty much "oral only" for me, but that's ok.

At any rate, it's wonderful to have Dr. Trost on board and offering his expertise.

Keep us posted on your experience with Lyrica.

Regards,
nemo
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50 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred in 2013. Have now begun a third episode in 2021. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline.

orriw

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Re: Let's talk about flaccid pain here
« Reply #15 on: November 28, 2021, 05:07:17 PM »

orriw, I read Dr. Trost's response to your question with great interest!

I was pleased to see he pretty much confirmed what I was proposing as the possible cause of our migrating penis/crotch/leg/foot sensations as more likely to be nerve involvement than actual Peyronie's damage getting worse.

This in itself is good to hear, as it's easier psychologically to deal with this sensation (even when it feels like it's coming from the penis) by reminding ourselves: "calm down - it's a nerve sensation."

That said, I don't think I'll be able to feel comfortable having penetrative sex until this sensation is gone, as every little tweak and twinge I feel - especially when I have an erection - is panic inducing. I don't think I could truly enjoy sex with this sensation present, as I'd be worried I was increasing the damage in the area of scarring. Until it's gone, it's pretty much "oral only" for me, but that's ok.

At any rate, it's wonderful to have Dr. Trost on board and offering his expertise.

Keep us posted on your experience with Lyrica.

Regards,
nemo


Hello i will finally give an update on Lyrica.
there was delays and i just started on the 12. November with my dosis, very low, 75mg daily, goal is 600.
The next week i increased to 150mg and since yesterday i am at 300mg daily.
At the beginning of the treatment i imagined some pain relief.
Unfortunately right now i can not confirm this anymore. There is no effect on the pain or if there is it's unnoticeable. However, my doc adviced this to do for 3 months, and i am still yet to double my dosis to 600mg. So it's possible that Lyrica needs it's time. I've had this pain for so long it's hard to believe i take a few of these pills and the pain vanishes.
 I guess in about 4 weeks, when i am on 600mg for about 3 weeks i can give a final conclusion if it helps.
 I will update again here.
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25y, injured at 21 :/

Reinjured late 2019 when having sex with weak errection.
No curvature, but rotation of the base to the left about 30degrees
Main problem: chronic flaccid pain.

Trying different stuff now

nemo

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Re: Let's talk about flaccid pain here
« Reply #16 on: November 29, 2021, 01:13:23 AM »

Thanks for the update - will continue to follow your progress or reporting if there is none.

Regards,
nemo
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50 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred in 2013. Have now begun a third episode in 2021. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline.
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