Peyronies Society Forums

Please login or register.

Login with username, password and session length
Advanced search  

News:

Welcome to J Francois Eid, MD - Directly answering member questions in the "Medical Professionals" section below the Treatment boards.
https://www.peyroniesforum.net/index.php/topic,17819.0.html

Pages: [1]   Go Down

Author Topic: Just keeps getting worse :(  (Read 283 times)

Sierra2014 and 1 Guest are viewing this topic.

thegreycat

  • Voting Member
  • **
  • Country: gb
  • Offline Offline
  • Gender: Male
  • Posts: 51
Just keeps getting worse :(
« on: November 21, 2022, 05:11:33 PM »

I clearly remember the first time I discovered a lump on the left hand side. The rest of the penis was completely smooth, because I checked it all over, because that's what you do. Other than this one single small lump.

It's been getting worse as time goes on, two lumps, then three, despite Vit E, despite all the supplements. Despite being in so much pain when I get aroused that I can't have sex or even get fully hard any more.

Just over a month ago I started VED.

Since then, it's been strictly no porn, no masturbation or anything.

My 1st lump turned into two, then three lumps around 4 months ago... now even though I'm doing NOTHING but VED, it's getting worse?!

Almost the entire left-side of my shaft is thickened and lumpy, it's like a gravel road compared to the right, which is still totally smooth.

When I used the VED, my right side engorges fully, the left basically doesn't.

How, when I've stopped doing ANYTHING that could possibly aggrevate, is this still getting worse?! No injury to start with, no mad masturbation techniques, nothing. I've done NOTHING, and yet here I am.

All hope of being one of the few who improves even marginally are long gone now. Nearly 10 months of this nightmare. Maybe I'm not too chicken to do something permanent after all. I can't suffer this much longer.

Just venting. Sorry.
Logged
35. No injury. Lump found Feb/early Mar 22.
Misdiagnosed, now waiting on Urologist referral.
Possible cause Vit D/Propranolol.
Large dent, left hand hinge, pain on erection.
Supportive partner, depression/anxiety.
Started VED Oct 22.

Sonic

  • Solid Contributor
  • ***
  • Country: se
  • Offline Offline
  • Gender: Male
  • Posts: 220
Re: Just keeps getting worse :(
« Reply #1 on: November 21, 2022, 05:42:12 PM »

You are not alone. I am 2.5 years into the disease and Erectile Dysfunction is getting worse. Urologists felt no plaque but did no ultrasound. Dent formed close to base on right side 1.5 years into the disease causing instability and very weak erections. Not even 50mg Sildenafil gives me erections as prior to the disease.

I only have morning erections probably 4/10 days and they are extremely weak. Prior to the disease I would look at my morning erections always rock hard and very big.

I am completely avoiding sex for the past 2 years. Already had severe depression prior to the disease and obviously it got worse when I got this. Prior to the disease if I did nofap and no porn for even just 7 days I would walk around with rock hard spontaneous erections and very high libido. I recently did 30 days of both nofap and no porn and it made zero difference. Zero spontaneous erections, still weak erections, no libido.

Prior to peyronies if I went 7 days or more without jacking off I would get very realistic sex dreams and the balls would empty themselves in sleep, now it never happens anymore which leads to severe blue balls everytime I do nofap.

All this bs and I still keep fighting and you must too. I have to find another doctor who can actually help for once. Maybe I will have to invest in a VED and if that does not work probably I must get an implant.

Never once in my life when I had just gotten Peyronies did I ever imagine I might end up having to get an implant but sadly it's now looking more like it each year. That's the thing about life, there's always struggles and battles. For me life has been nothing but one battle and struggle after another but I keep on fighting and will never give up.

I have an incredible amount of sympathy for you and everyone else on here with this disease. It is not easy as a man when your penis is dysfunctional. The anxiety and pshycological aspect takes it's toll but talking to others on here help because many of us are in the same boat.

Sorry for the wall of text but I wish you the best @thegreycat.

Keep your fighting spirit regardless of how tough that may be and in the end you will come out a winner, not the disease.
Logged
28 years. Started to develop a rightwards curve in June 2020.
narrowing on right side and about a 20-25° curve to the right.
Weakened erections and instability due to narrowing.

thegreycat

  • Voting Member
  • **
  • Country: gb
  • Offline Offline
  • Gender: Male
  • Posts: 51
Re: Just keeps getting worse :(
« Reply #2 on: November 22, 2022, 10:14:14 AM »

Thanks Sonic.

It's just beyond frustrating isn't it?

I'm sorry to hear about your struggles pre-peyronies, I can only imagine how this must have made things so much worse. Keep fighting the good fight.... it's all we can do I guess.

Thanks for being a sounding board, and please never apologise for venting also!
Logged
35. No injury. Lump found Feb/early Mar 22.
Misdiagnosed, now waiting on Urologist referral.
Possible cause Vit D/Propranolol.
Large dent, left hand hinge, pain on erection.
Supportive partner, depression/anxiety.
Started VED Oct 22.

Sonic

  • Solid Contributor
  • ***
  • Country: se
  • Offline Offline
  • Gender: Male
  • Posts: 220
Re: Just keeps getting worse :(
« Reply #3 on: November 22, 2022, 10:51:54 AM »

No problem. I'm always here to support!
Logged
28 years. Started to develop a rightwards curve in June 2020.
narrowing on right side and about a 20-25° curve to the right.
Weakened erections and instability due to narrowing.

Indenialguy

  • Voting Member
  • **
  • Country: gb
  • Offline Offline
  • Gender: Male
  • Posts: 28
Re: Just keeps getting worse :(
« Reply #4 on: November 22, 2022, 03:34:22 PM »

@sonic - credit to you sir, you are an incredibly supportive member of this community. I see you frequently posting to support others (including myself in the past) and I hope if nothing else in all this nightmare everyone here is experiencing, you give yourself the kudos you deserve.

GreyCat, I recently commented on another one of your posts and I'll repeat one key theme a lot of people seemed to be saying - please seek help for your metal health.
Hawk says this is a 50% battle with peyronie's and a 50% battle with your own mind, the anxiety and depression you're suffering will be making this so much worse for you.

You need to be kind to yourself. Get yourself to the GP, get antidepressants, get therapy (privately if you have to.)
You need to give yourself a fighting chance.

I totally understand your frustration, I've suffered for 5 years of not being comfortable with my penis since my first injury, the physical changes that that came from that injury led to me trying stupid and dangerous things to cover them up, that have now only made things worse, but just like I cant change what I've done, you can't control what is happening to you, but we can choose how we react, how we move forward.

I know it seems like your penis is the problem here, and it undoubtedly is physically, but please, and I mean genuinely please, seek help to gain mental stability.

There will be a way through this, for everyone, even if it ends up being an implant for us all, life won't end because of it, a lot of people find true happiness at the end of this very difficult journey.

Its change, its anxiety, its fear of the unknown, its not being in control, its all of these things rolled into one, but please know, the solutions aren't ideal, but they are solutions, even if your life burns to the ground, you can always start again, you can always rebuild.

I know you're just venting and it's healthy to do so, but get yourself in therapy, and that venting can become part of the healing process too.
Logged
32 yo UK
Engaged with two young children
Injured 2017, healed
RE injured Sept 2022
Chronic flaccid pain since 2nd injury
Starting 5mg cialis daily, trying to obtain pentox online

Possible hard flaccid, possible Peyronie's, possible nerve damage

Sonic

  • Solid Contributor
  • ***
  • Country: se
  • Offline Offline
  • Gender: Male
  • Posts: 220
Re: Just keeps getting worse :(
« Reply #5 on: November 22, 2022, 04:37:18 PM »

@Indenialguy

Thank you for the kind words. They mean more than you think.

And also thanks for some very wise words of advice you gave to greycat!
Logged
28 years. Started to develop a rightwards curve in June 2020.
narrowing on right side and about a 20-25° curve to the right.
Weakened erections and instability due to narrowing.

bentoboy

  • Solid Contributor
  • ***
  • Country: be
  • Offline Offline
  • Gender: Male
  • Posts: 104
Re: Just keeps getting worse :(
« Reply #6 on: November 22, 2022, 06:33:42 PM »

Hi there,

I’m so sorry to hear that you’ve been through all this nightmare. I understand how hard it is to handle all this pain and suffering, but we need to keep in fighting whatever happens. I’m sure there’ll be a solution, soon or later.

In fact, I’m in a very similar situation, and you can find quite a few posts made by me on this matter. I developed my first plaque around two years ago, and I’ve been getting more and more every 2-3 months. Honestly, I’ve already forgot how many lumps I’ve got - 5, 6, 7? It’s even hard to count as some of them tiny but hard and others long but less dense.

I’m sure you’d agree with me that the most annoying thing about all this nonsense is that there’s no way to know why this happens and what we could do. Unfortunately, science is quite oblivious on this matter. It might be a bit grim but I do think that at this point we just need to accept it: some things are just beyond our control. What we can do is to try those different treatments hoping that the situation doesn’t worsen. But often it does.
Logged
26 y. o. Peyronie since 2020: upward congenital curvature from the bottom - 20*; twist and curve to the left - 25*; two visible dents on the left side; multiple plaques everywhere; no pain

Vitamins; Tadafil; traction/bending; VED - nothing worked

Bud luck

  • Major Contributor
  • ****
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 740
Re: Just keeps getting worse :(
« Reply #7 on: November 22, 2022, 07:56:02 PM »

After trying all the "therapies" that just made it worse, acceptance is the only thing I have, what else?. I just wish I didn't do "experiments" on my penis Trimix, P-shot, Shockwave...
Logged
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 Erectile Dysfunction is getting worse
Had a PRP shot Aug 2021
I have a girlfriend
Age 46

FrankPD

  • Solid Contributor
  • ***
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 111
Re: Just keeps getting worse :(
« Reply #8 on: November 22, 2022, 11:02:14 PM »

These story’s are all too familiar.  We have to keep positive and not give up and hold on to the hope that one day a cure for the smallest of case can be found to stop progression.


This comment right here from @Indenialguy sums it up how we all feel.
“Its change, its anxiety, its fear of the unknown, its not being in control, its all of these things rolled into one, but please know, the solutions aren't ideal, but they are solutions, even if your life burns to the ground, you can always start again, you can always rebuild.”


Be safe and well guys.
Logged
Age 46
No injury
Diagnosis January 2022  
Have plaque
Hourglassing when flaccid and semi-erect
Still have my congenital curve, no severe curving
Massaging with vitamin E cream twice a day 
Low carb diet
Discomfort/aching sometimes
Best to all!

thegreycat

  • Voting Member
  • **
  • Country: gb
  • Offline Offline
  • Gender: Male
  • Posts: 51
Re: Just keeps getting worse :(
« Reply #9 on: November 26, 2022, 02:14:07 PM »

Thanks everyone, I really appreciate you taking the time.

So I ended up speaking to my GP who has offered me a low dose Sertraline to begin with, just to try and get some of the really low lows under control. We'll see how they help.
Logged
35. No injury. Lump found Feb/early Mar 22.
Misdiagnosed, now waiting on Urologist referral.
Possible cause Vit D/Propranolol.
Large dent, left hand hinge, pain on erection.
Supportive partner, depression/anxiety.
Started VED Oct 22.

gobbler

  • Voting Member
  • **
  • Country: al
  • Offline Offline
  • Posts: 76
Re: Just keeps getting worse :(
« Reply #10 on: November 26, 2022, 04:38:40 PM »

I feel everyone here. almost 3 years now and its still nowhere near where it was before. its hard to accept in mid twenties and doctors dont seem to be able to help or aren't "detecting an issue". I can also like @Sonic do nofap for weeks, before I couldn't make it two days. it has destroyed my sexuality and I have severe clinical depression now. I also have chronic penile pain, every erection is get is extremely uncomfortable.it never feels good anymore
Logged
diagnosed with peyronies disease in Feb. 2020
mid 20
tried VED without much success, Cialis and potaba
single

Bud luck

  • Major Contributor
  • ****
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 740
Re: Just keeps getting worse :(
« Reply #11 on: November 26, 2022, 04:47:33 PM »

After 3 years of my trauma the penis still getting worse due to PRP shot and Shockwaves, now my penis is completely deformed, I don't feel my penis and my nocturnal erections are gone!!!!!!!. I'm so depressed for trying to "correct" my initial deformity with unproven 'therapies' they took my money to made it worse!!!!!.
Logged
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 Erectile Dysfunction is getting worse
Had a PRP shot Aug 2021
I have a girlfriend
Age 46

Indenialguy

  • Voting Member
  • **
  • Country: gb
  • Offline Offline
  • Gender: Male
  • Posts: 28
Re: Just keeps getting worse :(
« Reply #12 on: November 26, 2022, 06:03:03 PM »

Thanks everyone, I really appreciate you taking the time.

So I ended up speaking to my GP who has offered me a low dose Sertraline to begin with, just to try and get some of the really low lows under control. We'll see how they help.

I'm so happy to see this, I really am. I am also on sertaline at a low dose of 50mg which is enough for me, don't freak out if it makes you a little more anxious/depressed at first, stick with it (under you doctors supervision of course. It takes a few weeks to kick in but once it does you really do feel a lot calmer, and as a result can see things logically.

To anyone else suffering depression and reading this, please seek help medically. Whilst I'm the first to admit uros and doctors may not cure our penis', they can certainly help with the depression and anxiety you may be feeling, and that is genuinely 50% of the battle.
Logged
32 yo UK
Engaged with two young children
Injured 2017, healed
RE injured Sept 2022
Chronic flaccid pain since 2nd injury
Starting 5mg cialis daily, trying to obtain pentox online

Possible hard flaccid, possible Peyronie's, possible nerve damage

gobbler

  • Voting Member
  • **
  • Country: al
  • Offline Offline
  • Posts: 76
Re: Just keeps getting worse :(
« Reply #13 on: November 26, 2022, 07:35:33 PM »

id be more open to anti depressants if they weren't so strongly associated with sexual side effects like Erectile Dysfunction
Logged
diagnosed with peyronies disease in Feb. 2020
mid 20
tried VED without much success, Cialis and potaba
single

thegreycat

  • Voting Member
  • **
  • Country: gb
  • Offline Offline
  • Gender: Male
  • Posts: 51
Re: Just keeps getting worse :(
« Reply #14 on: November 27, 2022, 07:19:51 AM »

id be more open to anti depressants if they weren't so strongly associated with sexual side effects like Erectile Dysfunction

Yeah the GP told me that was a potential side effect. I was like "I have Peyronies disease, that side of things is already gone."

Then I asked for Cialis and they told me no, that I'd have to wait for my Uro referral to come through for that. 21 weeks waiting so far.
Logged
35. No injury. Lump found Feb/early Mar 22.
Misdiagnosed, now waiting on Urologist referral.
Possible cause Vit D/Propranolol.
Large dent, left hand hinge, pain on erection.
Supportive partner, depression/anxiety.
Started VED Oct 22.

gobbler

  • Voting Member
  • **
  • Country: al
  • Offline Offline
  • Posts: 76
Re: Just keeps getting worse :(
« Reply #15 on: November 27, 2022, 07:21:28 AM »

thats ridiculous. Cialis is considered safe, not sure why a GP cant prescribe it. there is online offerings like Hims in the US where you can get it too, not sure about the UK. wish you good luck
Logged
diagnosed with peyronies disease in Feb. 2020
mid 20
tried VED without much success, Cialis and potaba
single

Indenialguy

  • Voting Member
  • **
  • Country: gb
  • Offline Offline
  • Gender: Male
  • Posts: 28
Re: Just keeps getting worse :(
« Reply #16 on: November 27, 2022, 02:35:39 PM »

You can get it from Lloyd's pharmacy in the UK. You fill out the online form and they grant you a prescription. About £46 per month for generic 5mg daily

That's what I do.
Logged
32 yo UK
Engaged with two young children
Injured 2017, healed
RE injured Sept 2022
Chronic flaccid pain since 2nd injury
Starting 5mg cialis daily, trying to obtain pentox online

Possible hard flaccid, possible Peyronie's, possible nerve damage

thegreycat

  • Voting Member
  • **
  • Country: gb
  • Offline Offline
  • Gender: Male
  • Posts: 51
Re: Just keeps getting worse :(
« Reply #17 on: November 30, 2022, 09:18:03 AM »

About £46 per month for generic 5mg daily



Hi... I can't seem to find them that cheap? I can find 4 tablets for £41, but not a months supply for £46?
Logged
35. No injury. Lump found Feb/early Mar 22.
Misdiagnosed, now waiting on Urologist referral.
Possible cause Vit D/Propranolol.
Large dent, left hand hinge, pain on erection.
Supportive partner, depression/anxiety.
Started VED Oct 22.

Indenialguy

  • Voting Member
  • **
  • Country: gb
  • Offline Offline
  • Gender: Male
  • Posts: 28
Re: Just keeps getting worse :(
« Reply #18 on: November 30, 2022, 01:59:44 PM »

https://onlinedoctor.lloydspharmacy.com/uk/erectile-dysfunction/tadalafil-daily

Search that link bud, the generic 5mg for a monthly subscription is £46.
If you only want 2.5mg it's only £40 per month.
Logged
32 yo UK
Engaged with two young children
Injured 2017, healed
RE injured Sept 2022
Chronic flaccid pain since 2nd injury
Starting 5mg cialis daily, trying to obtain pentox online

Possible hard flaccid, possible Peyronie's, possible nerve damage

thegreycat

  • Voting Member
  • **
  • Country: gb
  • Offline Offline
  • Gender: Male
  • Posts: 51
Re: Just keeps getting worse :(
« Reply #19 on: Yesterday at 07:31:22 AM »

Thanks Indenialguy

I have ordered some. Nearest Lloyds Pharmacy to me is only 10 miles away, so at least it'll be super discreet.

Many thanks
Logged
35. No injury. Lump found Feb/early Mar 22.
Misdiagnosed, now waiting on Urologist referral.
Possible cause Vit D/Propranolol.
Large dent, left hand hinge, pain on erection.
Supportive partner, depression/anxiety.
Started VED Oct 22.

Indenialguy

  • Voting Member
  • **
  • Country: gb
  • Offline Offline
  • Gender: Male
  • Posts: 28
Re: Just keeps getting worse :(
« Reply #20 on: Yesterday at 04:17:36 PM »

No worries bud. Good luck with it. It's really helped me with both erection quality and helping reduce flaccid pain
 
Logged
32 yo UK
Engaged with two young children
Injured 2017, healed
RE injured Sept 2022
Chronic flaccid pain since 2nd injury
Starting 5mg cialis daily, trying to obtain pentox online

Possible hard flaccid, possible Peyronie's, possible nerve damage
Pages: [1]   Go Up
 

Related Topics

  Subject / Started by Replies Last post
4 Replies
4910 Views
Last post December 30, 2012, 08:02:04 PM
by MattFoley
2 Replies
869 Views
Last post February 04, 2020, 04:06:55 PM
by Inkognito
1 Replies
316 Views
Last post July 16, 2022, 10:04:40 AM
by blex