Question about progression for veterans.

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Winter

Hi everybody.
I'd like to question the veterans of this forum on how their cases progressed after a while.
Usually the ones that got the implant are a lot more present and communicative. However, I don't see many men that experienced all the cycles of this disease and just carried on.
I guess that most that reached a balanced level of existence usually departs from the forum and choose to stay away. Therefore it remains a biased picture of the possible progression leaned to the conclusion of, either get an implant or to live with a everlasting slow downfall.
But I'll try to see what I can get in terms of answer. I know every person has a different history with this disease, but if anyone could answer, I will be very grateful.
Thank you very much!

(Assuming you feel you are on a, somewhat, stable phase)
1. How long did the pain lasted?
2. How long did the disease progressed?
3. Have any of the symptoms improved over time?
4. How are you today? Was there a time when you managed to have a moderately normal sex life?

41 yo, married. Onset on 07/20. Flare up on 07/21. Brand new flare up 01/23. Indentations and hourglass. It still hurts sometimes; No erectile dysfunction. Taking Pentox, Cialis, Supplements, trying diets, fasting, VED and manual traction.
God bless

MauvaisCoton

Good idea! I'd like to know more as well.

Here's my contribution:

  • When the disease started, all my erections were painful. I don't remember exactly but I think the pain lasted 4 to 6 months. Nowadays my erections don't hurt anymore but I can sometimes feel some dull pain at the plaque location after sex.
  • The curve appeared when the pain stopped. My condition has remained unchanged from 2017 to 2020 when I started to experience some degree of ED. I still don't know if it's psychological or caused by the scar tissue somehow changing.
  • Nope! Except for the pain during erections.
  • I don't think I'll ever have a "normal" sex life because of the anxiety I experience. Peyronie's disease being somewhat unpredictable, I'm often worried of making things worse. That being said, things are alright now with Cialis. And from 2017 to 2020, my ex-girlfriend and I had a satisfactory sex life. Most of the time, I didn't even think about Peyronie's disease anymore. I had learned to live with the curve but had the occasional worries.

Hope that helps.
30. Congenital curvature upward. Diagnosed with Peyronies Disease in 2017. Curvature near the base of the shaft (approx. 45° to the left). Still painful sometimes. Mild ED since summer 2020. Anxious.
Currently using RestoreX (since 04/21) and L-citrulline.

Xavier99


1. How long did the pain lasted? It was was brutal flaccid and hard for about 4-5 months. Literally hurt to rub in my pants while walking. I was loaded up on pentoxofylinne and Viagra which didn't do much. It did help sex though which I managed with my wife the whole time.. at least once every two weeks. Couldn't do much besides soft and slow.


2. How long did the disease progressed? It kept bending/changing  may-aug 2020.. started with a titled head..little bottleneck and narrowing. Then just stayed as is


3. Have any of the symptoms improved over time? No it's just stayed as is.. if I touch the nodule/plaque is can be irradiated again. I've tried manual traction and it also still causes discomfort.. it feels like the plaque is retracting and almost creaking all day if I do it. It's better when I feel nothing and not reminded all day about Peyronie's.


4.How are you today? Was there a time when you managed to have a moderately normal sex life?
I was lucky to not have a bend that made sex difficult. My wife doesn't even feel a difference but my confidence isn't great and I certainly don't feel sexy looking at it in bed. I used to have  straight arrow decent thickness 7in dick and now it's def a bit shorter and narrower. I take 25mg viagra before sex and It helps with stiffness.. I can go without if needed but it gives me a little confidence. Pain is all but gone a year later but I def take it easy.. I make sure I'm rock solid before use.. I don't jerk off near plaque site. It's a different sex life but could have been worse
35 yrs old
Onset 05/01/20 diagnosed 05/14/20. Taking Pentox, trental, multivitamin, Zoloft & Tylenol
Traction was painful and made it worse
Lateral plaque by glands 20 degrees left/ narrowing
Lost about 2cm length

Winter

To Xavier and MalvaisCoton.
Thank you guys very much for writing down those long and careful replies. As someone who is living the dreadfully unpredictable acute stage, it is very meaningful to hear from you. It is a very grim disease, but it may have light at the end of the journey, even if it only means some sort of stoic peace on a painless stability.  
41 yo, married. Onset on 07/20. Flare up on 07/21. Brand new flare up 01/23. Indentations and hourglass. It still hurts sometimes; No erectile dysfunction. Taking Pentox, Cialis, Supplements, trying diets, fasting, VED and manual traction.
God bless

Winter

Would anyone else like to post their experiences?
41 yo, married. Onset on 07/20. Flare up on 07/21. Brand new flare up 01/23. Indentations and hourglass. It still hurts sometimes; No erectile dysfunction. Taking Pentox, Cialis, Supplements, trying diets, fasting, VED and manual traction.
God bless

LWillisjr

I don't normally respond to these on an individual thread, because most of us veterans have a "My History" link in our signature.



(Assuming you feel you are on a, somewhat, stable phase)
1. How long did the pain lasted?     Peyronies onset June 2007 40 degree curve. Pain lasted about 6 weeks as curve progressed
2. How long did the disease progressed?  about 6 weeks progressed to 70+ degrees dorsal
3. Have any of the symptoms improved over time?   No, had a series of Varapamil (before Xiaflex) injections. Excision/grafting surgery July 2008
4. How are you today? Was there a time when you managed to have a moderately normal sex life?  Great, good erections, great sex life
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

Sta

1. How long did the pain lasted?

Onset 2012, pain was something mild and during erection mainly. I guess a year or two.

2. How long did the disease progressed?

It is still progressing

3. Have any of the symptoms improved over time?

Pain - yes. Deformity and shortening - no

4. How are you today? Was there a time when you managed to have a moderately normal sex life?

Absolutely normal sex life. Even better when it was before. Even made a second son!

Born 1985, Peyronie's since 2011/12. Lost approximately 3 cm of length and seriously bottlenecked.

nemo

As I'm now dealing with Peyronies Disease for the fourth time in the last 20 years, my responses will be in four parts per answer, with a, b, c, d, corresponding to the four different occurrences.

1: How long did the pain lasted? a) Just a few weeks; b) no or little pain; c) no or little pain; d) still in acute phase, flaccid pain for the past 6 weeks.
2. How long did the disease progressed? a) Perhaps 2 months; b) did not progress; c) over the course of about 2 years; d) don't know yet.
3. Have any of the symptoms improved over time? a) Bend decreased after a couple months; b) two very small indentations remained; c) indentations deepened but then went back to as they were before; d) remains to be seen (hopeful).
4. How are you today? Was there a time when you managed to have a moderately normal sex life? In between the first three occurrences of Peyronies Disease I had wonderful, amazing, normal sex. Currently, in the midst of a flare, I am not having penetrative sex due to an abundance of caution, only gentle manual and oral.
51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

Bud luck

1. I never had or have pain
2. 23 months and still progressing, mostly narrowing at the area of the dent.

3. Nothing is improving, penis is getting thinner. The dent is getting deeper, obviously traction and supplements are not working for me.
4. My sex life is ok, I still get erections  and I barely have a curve so penetration is not a problem. I have a strong libido that push my broken penis to work. I can't believe despite the narrowing and dent I still can get an erection.
My first symptoms started early in 2019
I tried Traction device, Pentofixiline, Q10, TRT, L-Argenine, cialis
I have narrowing/dent/hinge on the left side of my shaft
My ED is getting worse
Had a PRP shot Aug 2021
I have a girlfriend
Age 46

kovasis

onset june 2016 , lost of about an inch (2.5 cm in lenght), light curvature upwards (never mesured the degree)
1. How long did the pain lasted?
Still have pain from time to time (in flaccid state near the left top)- guess it will never subseed

2. How long did the disease progressed?
Almost 2 Years - I think I just started to early with vacuum device or it is a just a failure to use something like this at all in this condition cause it brought
me the 2 indurations at the top and helped nothing...

3. Have any of the symptoms improved over time?
Except of the pain there were no more Changes. No more indentions , no more damage or nodules.
The Fibrosis on the base and the 2 on the top still there , still not changed or progressed.

4. How are you today? Was there a time when you managed to have a moderately normal sex life?
Never stopped to have sex (not even on the onset) 2 to 5 time a week in between only 1- 3 times but its okay - use it or losse it ;-).

Take 1 x 400 pentox , 2,5 to 5mg Cialis per day ,  and up to 50 mg Sildenafil (on demand) - gives me moderat Erections.
But over the time i have to admit that the interest in Sex is fading more and more away because of the stress that these condition gives me
in the first 2 Years and the pain that reminds you every day - you're not "normal" anymore and never will be again.
So Yes, have find my way to live with it and of course will never know when it proceeds to worsening...

I read an really good comment a couple of Month ago on this Forum: "Tomorrow is never promised" - really really true so got to live thankful for evry day
it is like it is now.
greatings
kovasis

Age 51
First onset of Pyronnies  June 2016
Indurations under the glans and at the base.
4 Years Stable
Daily use of 5 mg Cialis and 300 mg Pentox

Winter

After two years with it, I think I am veteran enough to answer my own set of questions:

1. How long did the pain lasted?
It still hurts today. Every single time I have an erection it hurts. The pain eventually fades away as it gets fuller. Sometimes hurts more, sometimes a little less. But always something. Its kind of annoying, but bearable.
2. How long did the disease progressed?
It progressed in waves. On the first onset, maybe throughout a couple of weeks. On the second, just for a couple of days. Sometimes I think it is still slowly getting worse, but not sure.
3. Have any of the symptoms improved over time?
Some of the indentations on the upper went away. But the big dent on the lower part, right next to the glans is still there. Even doing VED for several months didn't help at all.
4. How are you today? Was there a time when you managed to have a moderately normal sex life?
Psychologically, I'm more or less at peace with all of this. If things continue like this, without changes, I think I can get on with my life despite the illness. I never stopped having a sex life. It's not the same as before, I admit. I'm much more careful and a little less enthusiastic about the frequency than I used to be because of the certainty of pain. I am also very conservative in my actions and positions. I think I've developed a deeper appreciation for each sexual relationship than before. Especially since I went completely NOFAP after the diagnosis. I see no point in wasting every use without the wife.

Wish you guys all the best.
God Bless
41 yo, married. Onset on 07/20. Flare up on 07/21. Brand new flare up 01/23. Indentations and hourglass. It still hurts sometimes; No erectile dysfunction. Taking Pentox, Cialis, Supplements, trying diets, fasting, VED and manual traction.
God bless