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Just keeps getting worse :(

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thegreycat

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.
35. No injury. Lump Feb 22.
Still waiting on Urologist referral.
Large dent, left hand & upward hinge 50deg. Bad erections.
Supportive partner but severe depression.
Vit E 1000mg, VED Oct 22. Cialis 5mg Dec 22. Only worsening since.

Sonic

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.
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

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!
35. No injury. Lump Feb 22.
Still waiting on Urologist referral.
Large dent, left hand & upward hinge 50deg. Bad erections.
Supportive partner but severe depression.
Vit E 1000mg, VED Oct 22. Cialis 5mg Dec 22. Only worsening since.

Sonic

No problem. I'm always here to support!
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

@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.
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

@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!
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

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.
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

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...
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

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.
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 
5mg Tadalafil
Low carb diet
Discomfort/aching sometimes

thegreycat

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.
35. No injury. Lump Feb 22.
Still waiting on Urologist referral.
Large dent, left hand & upward hinge 50deg. Bad erections.
Supportive partner but severe depression.
Vit E 1000mg, VED Oct 22. Cialis 5mg Dec 22. Only worsening since.

gobbler

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
diagnosed with peyronies disease in Feb. 2020
mid 20
tried VED without much success, Cialis and potaba
single

Bud luck

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!!!!!.
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

Quote from: thegreycat 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.

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.
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

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

thegreycat

Quote from: gobbler 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

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.
35. No injury. Lump Feb 22.
Still waiting on Urologist referral.
Large dent, left hand & upward hinge 50deg. Bad erections.
Supportive partner but severe depression.
Vit E 1000mg, VED Oct 22. Cialis 5mg Dec 22. Only worsening since.

gobbler

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
diagnosed with peyronies disease in Feb. 2020
mid 20
tried VED without much success, Cialis and potaba
single

Indenialguy

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.
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

Quote from: Indenialguy on November 27, 2022, 02:35:39 PM
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?
35. No injury. Lump Feb 22.
Still waiting on Urologist referral.
Large dent, left hand & upward hinge 50deg. Bad erections.
Supportive partner but severe depression.
Vit E 1000mg, VED Oct 22. Cialis 5mg Dec 22. Only worsening since.

Indenialguy

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.
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

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
35. No injury. Lump Feb 22.
Still waiting on Urologist referral.
Large dent, left hand & upward hinge 50deg. Bad erections.
Supportive partner but severe depression.
Vit E 1000mg, VED Oct 22. Cialis 5mg Dec 22. Only worsening since.

Indenialguy

No worries bud. Good luck with it. It's really helped me with both erection quality and helping reduce flaccid pain
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

ohnoohno

Quote from: thegreycat on December 01, 2022, 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

Just thought I'd chime in, from the UK too, I bought this exact box of taladafil for around 50GBP, I then had a urologist appointment who gave me a prescription for 6 months worth of 5mg cialis daily (a LOT) and it only cost about 15 quid total... I was very suprised... at boots
28yo, diagnosed Peyronies Disease 13/6/22, 30dg curve to right/slightly down, Erectile Dysfunction, indentation, shortening 1inch+

urologist gave me cialis 5mg to take daily and SOMAcorrect

praying i can get this under control asap, restore length/avoid Erectile Dysfunction

Indenialguy

I'm assuming your uro refused to give pentox like every other damn specialist in this supposedly great nation of ours?
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

ohnoohno

Quote from: Indenialguy on December 04, 2022, 04:25:21 PM
I'm assuming your uro refused to give pentox like every other damn specialist in this supposedly great nation of ours?


I'm not sure what that is to be honest, I just got 6 months worth of cialis so I'm at least somewhat positive about that...

I've left the UK since to travel! Bit annoying carrying this pump around with me and I want to date girls/enjoy but the whole situation holding me back right now... :(
28yo, diagnosed Peyronies Disease 13/6/22, 30dg curve to right/slightly down, Erectile Dysfunction, indentation, shortening 1inch+

urologist gave me cialis 5mg to take daily and SOMAcorrect

praying i can get this under control asap, restore length/avoid Erectile Dysfunction

Indenialguy

Love the fact you've chosen to live your life and go travelling man, true resilience and the upmost respect to you.

This disease might mess up our dicks, but I love to see that is doesn't get to take our balls as well! Top lad!
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