Peyronies Society Forums

Please login or register.

Login with username, password and session length
Advanced search  

News:

We offer our most sincere condolences to Old Man who lost his wife of many decades on Monday night to Pancreatic Cancer.   
He is in our sincere thoughts and prayers.

Pages: [1]   Go Down

Author Topic: My story and where I am at currently with Peyronies Disease/HF  (Read 460 times)

0 Members and 1 Guest are viewing this topic.

lonely_anon

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 10

Hey all, 30M from Texas and wanted to introduce myself/share my story.

My first penile injury occurred in Summer of 2020 when my partner at the time was riding me too rough and I popped out of her and felt an instant sharp pain at the base of my penis. At the time I took some time to rest and thought nothing of the injury and had no idea of Peyronie’s at the time.

I begin experiencing mild penis pain at very points in my shaft but assumed that was a “normal” part of aging. Little did I know this would come back to haunt me.

Fast forward to May 2021, I had a sexual encounter with another partner where I was only half erect but continued rough intercourse for stupid reasons.

1 month later I noticed my penis started leaning left and instantly started thinking Peyronie’s. I went in for a Doppler ultrasound with a flaccid penis and my Uro (actually their NP) told me that there was just some small fibrous tissue at the bottom of my penis but “nothing to worry about”. Through that diagnosis I was led to believe it was something else, and that led me to Hard Flaccid.


However, over a period of 8 months I’ve continued to notice changes in my penis that lead me to believe I have not only have hard flaccid, but potentially also Peyronie’s?

This really started ramping up the 2 last weeks when I started taking copious amount of vitamin c/collagen, doing intense ab/core workouts and strenuous biking, mixed with a bit of rough/forced masturbation. I feel like an idiot now for pushing my body so hard bc now I’m concerned I may have started an unhealable process.

My symptoms include:
- erectile dysfunction (have only been able to get hard at night during sleep and occasional morning wood)
- a small upward bend in my erect penis
- only able to get about 75% erect when it happens
- several “lumps” just under the glans that appear/feel soft and hard
- enlarged veins across my penis
- dark spots in those veins (blood clotting?)
- penile pain when flaccid, can be sharp or dull depending on inflammation
- penile pain after ejaculation
- buttocks, pelvic and leg nerve tingling in general

I just need someone to talk to I guess. I plan on going to the Uro again with this information and asking for some options on treatment - I don’t want this to get worse.

I’ve stopped all interaction with my penis other than to pee or bathe. I’m so scared I have Peyronies Disease and I will forever have a glass penis.  :-\

I’ve attached an Imgur link below for what I am seeing.

https://imgur.com/a/AaTL89Z
Logged
30 yr old.  First penile injury in 2020, second penile injury in 2021. 6.4" Erect / 4.7" girth. Slight upward bend and multiple lumps around penis.
Have Erectile Dysfunction and penile pain. Currently taking L-Arginine, Vitamin E, and CoQ.

Gerald12345

  • Voting Member
  • **
  • Country: de
  • Online Online
  • Gender: Male
  • Posts: 27
Re: My story and where I am at currently with Peyronies Disease/HF
« Reply #1 on: January 01, 2022, 02:43:46 PM »

Your story sounds a little bit like mine I posted few days ago. Erectile Dysfunction might have a psychological background. Hope that your next appointment with an urologist will further clarify your issue.
Logged
Peyronie's onset in 11/2021. Age 37
Two plaques under the glans. Minimal pain, only congenital curvature.
Tadalafil 5 mg per day + arginine and citrulline supplements

lonely_anon

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 10
Re: My story and where I am at currently with Peyronies Disease/HF
« Reply #2 on: January 01, 2022, 10:51:27 PM »

Thanks for the well wishes - I’m eagerly/nervously awaiting the appointment and will update my post once I get more insight. I wish you the best of luck as well!
Logged
30 yr old.  First penile injury in 2020, second penile injury in 2021. 6.4" Erect / 4.7" girth. Slight upward bend and multiple lumps around penis.
Have Erectile Dysfunction and penile pain. Currently taking L-Arginine, Vitamin E, and CoQ.

Hawk

  • Bionic Penis 22cm Titan - Dr. Eid 8/7/18
  • Administrator
  • *****
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 6440
    • Peyronie's Disease
Re: My story and where I am at currently with Peyronies Disease/HF
« Reply #3 on: January 02, 2022, 01:03:45 AM »

Welcome LA, and a huge thanks for filling in your signature line.

I am of the opinion that any vein issues and tingling anywhere other than the penis have NOTHING to do with Peyronies Disease.

I too suspect psychological issues with the Erectile Dysfunction.  Your penis looks very straight and fully functional.  I won't even comment on "forced masturbation" other than to say you certainly know better than to abuse your only penis, especially when you might guess you have some tendency for fibrosis.  You do NOT want to trigger a process that takes on a life of its own.

If fibrosis does not progress from here it seems you will be fine.  Try some L-Arginine for arterial dilation and improved circulation and erections.

Read the survival guide on this board. https://www.peyroniesforum.net/index.php/topic,3180.0.html

Hawk

Founder/Administrator
Logged
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

lonely_anon

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 10
Re: My story and where I am at currently with Peyronies Disease/HF
« Reply #4 on: January 02, 2022, 01:45:50 PM »

Thank you for the welcome Hawk and no problem on filling out my sig.

As for the nerve tingling, I've actually scheduled a Pelvic Floor therapy appointment for this but I'm wondering if the added stress of this issue is exacerbating my inflammation.

As for Erectile Dysfunction, I think you both may be right. I suffer from depression/anxiety and have had a really rough past 8 months with my previous partner. I think this emotional distress may also be adding to this.

I've definitely learned my lesson on forced and rough masturbation and don't plan on masturbating again without the use of a toy and in a much more safe manner (like when I get a natural erection) instead of forcing an erection.

Thank you for sharing the survival guide - I will definitely be asking my Uro about Pentox/Cialis.

One question for you if you have time - do you think urinary retention/incomplete voiding could be a symptom of Peyronie's? One issue I forgot to add to my introduction when I first noticed the lumps/plaques on December 24th, I've noticed urination doesn't start immediately, has gotten weaker/angled and I end up dribbling so much that even after I'm "done" in the restroom, I'll wet my underwear with a few drops. It's distressing to say the least as I figured this issue in particular wouldn't happen to me until I was much older.
Logged
30 yr old.  First penile injury in 2020, second penile injury in 2021. 6.4" Erect / 4.7" girth. Slight upward bend and multiple lumps around penis.
Have Erectile Dysfunction and penile pain. Currently taking L-Arginine, Vitamin E, and CoQ.

Hawk

  • Bionic Penis 22cm Titan - Dr. Eid 8/7/18
  • Administrator
  • *****
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 6440
    • Peyronie's Disease
Re: My story and where I am at currently with Peyronies Disease/HF
« Reply #5 on: January 02, 2022, 09:22:04 PM »

do you think urinary retention/incomplete voiding could be a symptom of Peyronie's? ...when I first noticed the lumps/plaques..., I've noticed urination doesn't start immediately, has gotten weaker/angled, and I end up dribbling so much that even after I'm "done" in the restroom.

Peyronies Disease is NOTHING but scaring on the tunica.  It has no association with the urethra, prostate, or bladder.  Significant plaque on the spogiosum surrounding the urethra could, in theory, affect urine flow, but I have never known that to happen in any significant way.

That sounds much more like the result of prostate enlargement or bladder issues, or a possible stricture in the urethra.

Logged
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

lonely_anon

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 10
Re: My story and where I am at currently with Peyronies Disease/HF
« Reply #6 on: January 03, 2022, 07:20:43 PM »

Just got back from the Uro and validated your statements above about the urinary issues. He suspects bladder/prostate issues but didn't seem that concerned with what the problem was. He offered a cystoscopy, but I think I need to do more research to see if this is the route for me.

When I explained my Peyronie's symptoms and showed him the lumps, he did a physical examination but told me he felt no plaque. When I asked about the lumps he said they're probably calcifications. Okay... well calcifications can turn into plaques, right? I asked him if I should be worried about that happening he dismissively told me no. When I told him about the other symptoms like the flaccid penis pain, hourglassing, and bend, he brushed me off and told me that I was just experiencing psychological Erectile Dysfunction and that penises change with age. He prescribed me some Tadalafil and told me to check back in 3 months. Didn't even prescribe me Pentox. I might need to buy that on my own. FKKK.  >:(

I'm so pissed - it legitimately felt like he didn't care about my issues. And to make things worse, the area on my penis with lumps feels inflammed now after his vigorous physical exam. I'm going to look into Peyronies Disease Specialists or Vascular Radiologists in Texas and see if I can schedule something with them.
Logged
30 yr old.  First penile injury in 2020, second penile injury in 2021. 6.4" Erect / 4.7" girth. Slight upward bend and multiple lumps around penis.
Have Erectile Dysfunction and penile pain. Currently taking L-Arginine, Vitamin E, and CoQ.

Hawk

  • Bionic Penis 22cm Titan - Dr. Eid 8/7/18
  • Administrator
  • *****
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 6440
    • Peyronie's Disease
Re: My story and where I am at currently with Peyronies Disease/HF
« Reply #7 on: January 03, 2022, 09:30:19 PM »

I feel your frustration, but that is far more typical than not. 

After 18 years here, I have learned to read between the lines.

Always write down questions in advance and frame them, so a doctor has no easy way out without giving a direct answer to the question. For instance, I would never answer yes, even if a person asked me if they need to worry about an aggressive form of cancer because "worry" is not a useful response. A doctor can honestly answer no to that question regardless of the seriousness. What you wanted to know is the odds that they will turn into plaques.

Here is the answer to that question: Paques can become calcified, so any calcifications he is speculating about would already be plaques. In fact, they would be plaques in an advanced, likely permanent stage. The only exception would be if he were talking about some other vague calcification in tissue. The truth is it sounds like you got the typical response you will get from all doctors that don't specialize in Peyronies Disease. If they have female patients, treat kidney stones or prostate issues, they likely know less about Peyronies Disease than many members. It is an unrewarding disease with no "cure." All treatments are outside their skillset, so they brush it off.

Do not be too concerned about the Pentox.  That is the one section of the Survival Guide we need to tweak because the main study supporting Pentox has been called into serious question. As a result, Peyronies Disease specialists are now divided on prescribing it.

Logged
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Pfract

  • Global Moderator
  • ***
  • Country: ca
  • Offline Offline
  • Gender: Male
  • Posts: 2193
  • #whateverittakes
Re: My story and where I am at currently with Peyronies Disease/HF
« Reply #8 on: January 04, 2022, 06:41:35 AM »

hey lonely_anon:

Welcome aboard. What exactly do you mean by "popped out of her"? did she came down on your erection? Regardless of what happened, you are not getting the proper care you deserve. It happens a lot with Peyronies/Erectile Dysfunction patients. You are being offered care for things you don't need. You should be getting a consultation with a sexual medicine specialist/Andrologist to manage your Erectile Dysfunction symptoms and help you achieve better erections.

What medication are you taking for that? It is crucial that you have the best rigidity possible whilst having sex exactly to prevent buckling and further worsening your condition.

Another thing worth mentioning is that flaccid ultrasounds for Peyronies are dubious at best, let alone to examine blood flow. You need to have an erect ultrasound where they inject erection-inducing medication. Been there, done that. Without knowing exactly how your penile blood flow is how do you know which therapy are you going to have? to manage your Erectile Dysfunction? VED? Injections? Pills? which strength? with or without erection bands? Do you have venous leakage or bad arterial inflow? or both?

lonely_anon

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 10
Re: My story and where I am at currently with Peyronies Disease/HF
« Reply #9 on: January 06, 2022, 11:32:00 PM »

@Hawk

I'm definitely going to go more prepared next time. At least I brought pictures with me on this last visit. Yeah, that's exactly what it seemed like. I'm going to start looking for a more specialized doctor for this.

And oh wow, did not know that. Would you mind linking me to the articles/data refuting the Pentox articles shared?
Logged
30 yr old.  First penile injury in 2020, second penile injury in 2021. 6.4" Erect / 4.7" girth. Slight upward bend and multiple lumps around penis.
Have Erectile Dysfunction and penile pain. Currently taking L-Arginine, Vitamin E, and CoQ.
Pages: [1]   Go Up
 

Related Topics

  Subject / Started by Replies Last post
15 Replies
4278 Views
Last post May 26, 2013, 10:26:07 AM
by Obsie
4 Replies
3034 Views
Last post September 16, 2013, 09:00:04 PM
by james1947
7 Replies
1758 Views
Last post November 19, 2015, 09:32:54 PM
by LWillisjr