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Author Topic: Could spontaneous resolution be genetic?!  (Read 343 times)

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TWalker

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Could spontaneous resolution be genetic?!
« on: April 12, 2021, 04:13:14 PM »

Currently dealing with the nightmare that is the acute stage of Peyronies Disease.

My father had Peyronies Disease when he was 40 (fairly young but not as young as me). Like mine, his was also indentations/hourglassing and he had 4 plaques.

3 of his 4 spontaneously resolved 100% and the other one resolved 80%.

I'm wondering if the fact that his spontaneously resolved means mine is more likely to? (realise that as with everything Peyronies Disease there won't be a definitive answer!)

SO... I'm curious if any of you guys has had a family member who had Peyronies Disease resolve spontaneously and if so did your Peyronies Disease do the same or did it not? (For those of you who don't have a family member whose Peyronies Disease resolved- did your Peyronies Disease behave similarly to your family member's or totally different?)

Thanks for taking the time to read!
-TW


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27, Peyronies Disease started 4 months ago after sex injury- still progressing. Dad had Peyronies Disease
1 plaque on each side opposite each other near base- causing indentations on side and top and thus hourglassing- could be 1 circumferential scar?
Pentox, Cialis, L-Citrulline

Kobegianna

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Re: Could spontaneous resolution be genetic?!
« Reply #1 on: April 16, 2021, 09:15:47 PM »

I probably have almost the exact same symptoms as you. Started about 4 months ago with lain from sex injury. First dent noticed about two weeks ago and presently hour glassing is very evident and erection quality is gone. Cannot get full erect and girth is gone too. How has the Pentox worked for you? Have you started traction ? Or ved?
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34 yrs Old, Healthy very active
Possibly injured penis or took too much Cialis
Symptoms starting January-February 2021
First dent seen April 4, 2021, painful erections

TWalker

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Re: Could spontaneous resolution be genetic?!
« Reply #2 on: April 16, 2021, 10:26:05 PM »

Snap! (Oops poor word choice since that's what caused our issue :/) Seems we have a more challenging type of deformity to treat but I am determined to find a way.

Only been taking the Pentox 2 weeks so don't really feel I can comment on its utility yet. Have done a ridiculous amount of reading about non-surgical Peyronies Disease treatments though as well as discussing the reasoning behind each with a few tip top doctors I'm lucky enough to have access to (though none are urologists). My conclusions were that Pentox (400mg 3X/day), Cialis (5mg daily) and L-citrulline (750mg 3X daily) were all fairly low risk ways of potentially reducing progression of the disease. There's little definitively conclusive evidence but all make theoretical sense and my attitude is that if something is, on balance, unlikely to cause me harm and has even a slight possibility of helping my situation/doesn't cost a lot/doesn't take an unreasonable amount of time then I'll give it a go! (I call it 'playing the odds')

Using this same theory I'm about to start between 4 and 7 additional antioxidants/supplements which are probably all less likely to be beneficial than the aforementioned 3 I'm already taking but I think also have some sound theoretical reasoning with low risk profile. I've yet to finish my research and finally decide which of these I'm going to take so I'll hold off on recommending for now but if you remind me in a couple of days I'll let you know which ones I decided to go with. If each of these interventions has a small chance of helping a bit and I throw enough of them at the thing then I'm hoping the odds are in my favour that one or a few of them help at least a bit even if some of them do nothing at all. Additionally, I'm considering applying something topically but haven't got round to doing enough reading on what will actually penetrate/have a benefit/low risk.

As regards to VED and traction I've got both (SomaCorrect and PenimasterPRO). Used the VED for a few weeks and stopped using it a week ago because I was having minor plaque pain intermittently throughout the day and wondered whether I should be squishing my penis when my plaques were painful. I think I will be resuming VED at some point in the next couple of days (10 mins twice a day) and as for traction I'm very torn... It seems mental to me to be stretching an acutely injured penis (could make matters worse) however the only major Spanish study of PTT during the acute phase of Peyronies Disease showed very promising results so I'm very tempted to give it a go even though its a major life inconvenience as it seems that there is a very strong correlation between time worn and results achieved (I think 6+ hours a day is optimal). My primary issues are the dents or 'shark bites' as I call them and hourglassing (sounds like yours are too) and I'm not noticing a particularly pronounced curvature... yet- if it does start curving a lot then I'll certainly do PTT as it seems to be very effective at reducing curving during the acute phase. PTT seems very effective at lengthening the flaccid penis (and presumably that means your erect penis is also lenghtened... anyone know!?) but only 3 studies I've read of show small increases in flaccid girth (one of these claims improvement in hinging) and all of I've read do not show girth increase which is dissapointing... Likewise I'm underwhelmed by the VED results for our particular issue though there are far fewer studies on this so harder to be definitive. I do however note that many members on this forum have found VED and PTT useful (to varying degrees) for our particular deformities so that gives me some optimism for their efficacy. Bottom line with these mechanical interventions is that I view them as potentially more risky interventions (at least in terms of penis worsening) than the oral options I'm taking and considering taking. I do however think they may have more potential to help than most of the oral options so it's a tough decision I'm currently weighing up.

I view injections as having an even greater risk profile (very dependent on which you go with) and far greater expense than the mechanical options so I'm less enthusiastic to start those though I may be tempted if things continue to go downhill.

When you say it started 4 months ago but you only noticed first dent two weeks ago, I'm curious if you noticed any symptoms or change during this intervening 3.5 month period (e.g. noticing a lump) or was the dent the first physical change you noted since the injury?

-TW
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27, Peyronies Disease started 4 months ago after sex injury- still progressing. Dad had Peyronies Disease
1 plaque on each side opposite each other near base- causing indentations on side and top and thus hourglassing- could be 1 circumferential scar?
Pentox, Cialis, L-Citrulline

Kobegianna

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Re: Could spontaneous resolution be genetic?!
« Reply #3 on: April 17, 2021, 12:08:10 AM »

4 months pains. Started January or February. When I felt pain on erection I didn’t think too much of it because once I got fully hard the pain went away. So left it alone for some time. But tried again couple weeks later and same exact pain getting an erection  so I assumed I injured it during the last time I had sex. I was drunk and I’m guessing I wasn’t as hard and possible injured my penis. However I did get the corona virus and didn’t touch my penis for the whole 2 week quarantine. After I got better I tried mastubating again and same thing pain getting erect but once fully erect pain kind of subsided. I did try shock wave therapy for 2 sessions and now I’m am scaddd I may have aggravated the inflammatory response. Because two weeks after the shockwave therapy is when I noticed my first dent. At this time however even with the dent I was able to erections and pain was gone. So the last two weeks I have been doing traction but now I am getting bad hour glassing and denting. I tried getting erect today and could not even come close to a full erection. I would say 50-60 perfect full. I am mortified. I have Pentox but I haven’t started it yet. I been taking ubiquiboll, citrulline, argines. Everyone here seems like they say keep doing traction and ved. But I am not sure if I’m doing more damage or if it’s just the disease progressing regardless of if I did anything
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34 yrs Old, Healthy very active
Possibly injured penis or took too much Cialis
Symptoms starting January-February 2021
First dent seen April 4, 2021, painful erections

TWalker

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Re: Could spontaneous resolution be genetic?!
« Reply #4 on: April 17, 2021, 04:52:48 PM »

Also had Covid recently... did your pain start when you had Covid or did your pain start long before you got Covid? (if so how long was the period of time between you having pain and getting Covid?)

Argh ye it's a nightmare trying to decide whether those mechanical interventions could improve things massively/halt progress or make things worse by aggravating the inflammation. It's really hard to know if correlation=causation... for example... two days after I started Pentox and Ciallis I noticed my dents had got a little deeper... I think in my case it's pretty unlikely that those oral interventions had anything to do with deterioration, likewise with yours it's probably more likely to just be the natural progression of the disease as you say but you can't be sure. Though I do feel that mechanical interventions carry a greater risk of aggravating things than oral interventions which is why I'm hesitant to try them... I'm obviously hoping mine slows down or stops ASAP but if it doesn't I'll probably throw all the mechanical methods I can at it as at that point I feel like I have little to lose. If I were in your position I'd probably start the Pentox based on my 'playing the odds' approach but of course that's a decision only you/your doctor can make.

A couple of questions- do you have 1 or more plaques you can feel? How big do they feel and when did you first notice them?

As for the erections... it could well be the Peyronie's causing it but from the reading I've done it seems like it's a bit more common for Erectile Dysfunction to come a bit later in the Peyronies Disease timeline IF you're going to get it... maybe during the chronic phase (I think that's because that's when the plaques harden up and mess with blood flow but not entirely sure). Of course it is possible that the Peyronies Disease has caused the Erectile Dysfunction you've noticed recently but I have to say this... I've always been told that often a large element of people's Erectile Dysfunction is psychological and I never really believed it until I got Peyronies Disease. During the early stages of my Peyronies Disease- some days I thought the Peyronies Disease was all in my head and was relaxed and got erections very easily but on days where I thought 'this is probably Peyronies Disease starting' I struggled immensely to get an erection because I was so stressed/conscious about it. It was mad, one day boom erection and the next 5 minutes effort requiring porn, lube, contorting myself and immense focus to get an erection. Of course I have no idea but it seems possible you're experiencing a similar thing. I was so worried one day that I was getting Erectile Dysfunction that I bought one Viagra to try (meant to work within an hour) and when I took that and tried an hour later I got erect very easily. I think the daily Cialis is helping me get NTE's too as I often wake up with one.
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27, Peyronies Disease started 4 months ago after sex injury- still progressing. Dad had Peyronies Disease
1 plaque on each side opposite each other near base- causing indentations on side and top and thus hourglassing- could be 1 circumferential scar?
Pentox, Cialis, L-Citrulline

Kobegianna

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Re: Could spontaneous resolution be genetic?!
« Reply #5 on: April 17, 2021, 05:28:48 PM »

To be honest I don’t know what these “plaques” are. I h w yet to find any or maybe I just don’t know how to identify them. I have dents and hour glassing. Right below the glands. I have pictures up in my Introduction post. And i have a calficiation in the septal area. If I press my flaccid penis between my thumb and index finger I feel a hard plaque or calcification  like in the middle of my Penis. Like inside. Not dorsal or ventral.
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34 yrs Old, Healthy very active
Possibly injured penis or took too much Cialis
Symptoms starting January-February 2021
First dent seen April 4, 2021, painful erections

Kobegianna

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Re: Could spontaneous resolution be genetic?!
« Reply #6 on: April 17, 2021, 05:31:36 PM »

Also the pain started before I got corona. But corona may have kept the inflammation going longer thus making the injury not heal correctly forming fibrosis. But who knows maybe it was the natural progression of the disease I have no idea. If corona did cause it with also taking the vaccine my body was probably “fighting” or inflamed for over 2 months pretty not correctly healing thus giving me all thee issues. That’s just plan bad luck and woe is me
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34 yrs Old, Healthy very active
Possibly injured penis or took too much Cialis
Symptoms starting January-February 2021
First dent seen April 4, 2021, painful erections

Andy_75

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Re: Could spontaneous resolution be genetic?!
« Reply #7 on: April 21, 2021, 12:24:13 PM »

Yeah, been 4-5 months here too gentlemen, since I noticed a bump.

No symptoms, no Erectile Dysfunction, no pain, no curve (touch wood - ha! —see what I did there).

So saw a urologist at 3-4 months or so and he could not feel the bump so had to point it out to him, it is a small pellet size about a 1/4 up the top of the shaft.

When he felt it he said likely very mid Peyronie’s but couldn’t give me a definitive.

So of course I am a bit neurotic and have been inducing erections once a week and then taking pictures to compare.  I am super paranoid even though the Uro said he felt I was past the deformity window in his opinion/experience...in other words, if it is going to start deforming it happens in the first 2 weeks to 3 months.

Unfortunately I have found case reports where curvature etc, has started even as late as 7 months in.

So I figure I will be paranoid and anxious until I hit the 1 year point at which point I will hopefully still have no deformity (knock on wood).

The Uro said it was a very small bump but felt fibrotic which begs the question as to whether or not it is truly Peyronie’s if you have a bump but no symptoms or is it just like a scar, sort of like a benign cyst some people get (if you are not symptomatic —touch wood).

It’s odd too because during my research a lot of Uro sites and even research papers state, “for a lot of men with mild Peyronie’s, the condition spontaneously resolves/heals itself within 12-16 months.”  So not sure what to make of any of this.

I guess the plaques can disappear/resolve in some men.

I am currently take acetyl l carnitine as a supplement as there are 2 studies backing it, as a “just in case”.

I am out of a relationship at the moment so doing the ‘no fap’ as in, no sex or masturbation as I want to wait a year and do not want to risk mucking around and injuring myself further.  First 2 months were difficult but now into a rhythm.  Work from home and only go out for food/groceries as everything is locked down atm here.

So, I don’t know guys, my Uro said it is a very poorly understood disease and that not much people know much about it in terms of etioligy...specifically Doctors...
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Age: 39
Symptoms: Bump on shaft (no pain/no curve), not sure if Peyronie's?
*Waiting to see a Urologist*

Kobegianna

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Re: Could spontaneous resolution be genetic?!
« Reply #8 on: April 21, 2021, 07:53:02 PM »

Pain 4 months ago. Noticed dents 3 weeks and now hour glassing. This disease is devasting. I’m scared to look at my dick everyday
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34 yrs Old, Healthy very active
Possibly injured penis or took too much Cialis
Symptoms starting January-February 2021
First dent seen April 4, 2021, painful erections

TWalker

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Re: Could spontaneous resolution be genetic?!
« Reply #9 on: April 21, 2021, 10:01:41 PM »

100% feel ya Kobe... it has also totally destroyed my mental health- just trying to stay optimistic and hope things stabilise soon but it’s exceedingly hard. I’m the same- terrified whenever I’m trying to get hard that I’ll notice a new deformity or more progress. According to my communications with a few urologists, whilst the deformity can develop over 3-18 months, it is most common for the aggressive acute phase to burn out around the 5-7 month stage (though it definitely last longer in some cases). I’m at 4 months as of today so keeping my fingers crossed it’s going to bugger off rather soon!

Andy- glad things haven’t progressed with you... seems from your research that you’d be unlucky if it suddenly started causing a deformity 4 months in (my Peyronies Disease deformity started within 2 weeks of injury which seems pretty quick) but as you say it doesn’t seem to be the most predictable disease. Highly recommend taking a video of it in its most erect state possible and panning around to all angles (wish I’d done that at the start) If things stay stable I’m sure you’ll feel more and more relaxed as each day goes by!

Kobe and I aren’t so lucky :/

As for the the spontaneous resolution you mentioned Andy... my understanding was that it’s rarer than initially thought of- seemingly less than 10% of cases- if you had a bunch of studies and websites saying something else then would you mind private messaging me the links so I can check them out? (I don’t believe you’re allowed to post links on the forum)

-TW

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27, Peyronies Disease started 4 months ago after sex injury- still progressing. Dad had Peyronies Disease
1 plaque on each side opposite each other near base- causing indentations on side and top and thus hourglassing- could be 1 circumferential scar?
Pentox, Cialis, L-Citrulline

Mikel7

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Re: Could spontaneous resolution be genetic?!
« Reply #10 on: April 22, 2021, 05:42:00 AM »

100% feel ya Kobe... it has also totally destroyed my mental health- just trying to stay optimistic and hope things stabilize soon but it’s exceedingly hard. I’m the same- terrified whenever I’m trying to get hard that I’ll notice a new deformity or more progress.

-TW

   Keep focusing on the positive side that you are being proactive and things will eventually turn around and get better.  We have all experienced this too -  the mental anguish is indescribable.  Things are calming down for me now and I am still telling myself that this is a marathon and not a sprint.   Talking with other guys about this is our support mentally.  Knowing there is someone else who shares my feelings.  :)  Mike
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Lump April 2020, age 60 , Dr Levine 6-26-20,
Dorsal Curve 11-1-20 , Peyronies
Vit E400mg, COQ10, ALCAR, Heat Therapy, Penimaster, Pentox, Cialis
had SNHL 7-31-20 - Stopped all Meds because ototoxicity  Heat/traction/VED are working.

Andy_75

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Re: Could spontaneous resolution be genetic?!
« Reply #11 on: April 22, 2021, 12:16:31 PM »

Twalker,

It was only perhaps 2, maybe 3 Uro websites and maybe one study in the Abstract part. It said for a lot or many men with a mild form of Peyronie’s, the condition often reverses or resolves itself or something along those lines.

I have read the 10% line a lot more, as you mentioned.

Yeah, I have been taking pictures every week for going on 5 months now from various angles as you suggested and studying them.

Like you guys, even though I don’t have a pronounced or deformity (knock on wood), I have been very anxious and stressed because as you guys have said, when it comes to do induce an erection, I am so scared it is going to show deformity.

I only check the bump maybe once a month, I figure best not to poke the sleeping bear at this point.  I think it is about the same size.

It is mental anguish and even if I do make it through to say 12 months without deformity, if the bump is still there, I worry the erectile tissue is compromised and I would be fearful of sex and masturbation after reading so many stories here.  Ugh.
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Age: 39
Symptoms: Bump on shaft (no pain/no curve), not sure if Peyronie's?
*Waiting to see a Urologist*

Andy_75

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Re: Could spontaneous resolution be genetic?!
« Reply #12 on: April 22, 2021, 12:20:15 PM »

The exact quote.

Quote
Peyronie disease often happens in a mild form that heals on its own in 6 to 15 months.
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Age: 39
Symptoms: Bump on shaft (no pain/no curve), not sure if Peyronie's?
*Waiting to see a Urologist*
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