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Just venting - Really struggling

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thegreycat

Hey guys and gals

Sorry for the downer post, I just need to get this off my chest. 7 months in and just not doing so good.

Still waiting on my Uro referral, the NHS is so slow at the moment with everything going on.

Some days, I manage to just about nearly forget about this horrible thing, until I bend down and feel my lump tugging under my skin, or I catch my lump after peeing. Other days, I get dull flaccid aches on and off for most of the day which is absolute torture.

Regardless of my day-time symptoms, I am still consistently waking up with night time erection pain and significant curvauture when I go for a pee in the night, I'm assuming because I'm usually in a half-erect state at that point.

Night times are becoming really difficult because of this. I've started getting scared of going to sleep because as soon as I awake with an erection or with pain I panic. It's so F^@$!ng distressing. I'm shattered by the time the evening rolls around, but then I don't dare go to sleep because of this fear.

My mental health is in the toilet because of this. I've never felt so consistently helpless and low.

Does anyone else feel lke self-help stuff feels like it no longer applies, because it always talks about going "through" stuff, implying there is an exit? With this, there isn't. This is permanent.

I haven't made love with my partner for months, and the last few times before I had to stop were painful. I'm absolutely beside myself with guilt over putting my girlfriend through this too. She's incredibly supportive, but I feel like I'm less of a partner now, less intimate, less happy, less hopeful. It's very clearly having an effect on her. We do talk about it, and I'm lucky to be in a really communicative relationship, but the guilt is all-consuming at times.

TV & Music sex/intimacy references just feel like a taunt, and the odd time I've looked at porn I've found myself just feeling sad and envious, followed by panic about getting aroused as I don't want to be in pain. It's like I've had my biological code for arousal re-written and now it's all wrong.

Despite my best efforts, I'm drinking a lot more than I should. I know it's bad, I'm working on it, but it does take the edge off at night when I need to sleep.

I used to run and lift 5 times a week, I was fit and healthy, but the propranolol I was wrongly put on (that I suspect may have been a causing factor of my peyronies) stopped me being able to run, so I'm gaining weight, I'm unfit. Despite the fact I no longer excercise, I've managed to get suspcted plantar fascitis, so I now can't lift or run, even if I want to.

I do think I'm depressed, because despite knowing that I NEED to stop drinking, that I NEED to start excercising, that I NEED to get a handle on my diet, that I NEED to get out of bed on time... I just can't. I am incapable. I am apathetic to it. I just feel hopeless and like I just don't have it in me.

I told the GP that there was a significant mental health aspect to this, and all they did was tell me they'd expidite my Urologist referral. Nothing for nearly 2 months so far.

I use this forum as a way to feel connected to others with this awful conditon, so I'm super thankful to everyone here sharing their thoughts and offering their support but outside of this I feel terribly alone. I've had episodes of suicidal thoughts in the past, but a few days ago I found myself messaging friends thanking them for the good times and feeling weirdly peaceful as I did, and that has really scard me.

Truth is I'm too much of a chicken to do anything serious, and the idea of how my family and friends would feel if I put them through that enough to keep me from doing anything daft for now, but these thoughts are horrible nonetheless.

Now that I've written all of this, I actually feel weirdly empowered.

I have loads of weights at home that I used extensively in the past. I guess I could crack them out and find some excercises that don't involve my feet. I could get a 2nd hand bike to use instead of running. I just keep reading all these accounts of people who get their fitness and diet in order noticing positive changes to their conditon, so I at least need to throw everything I can at it.

Yeah [email protected]< it, what have I got to lose?

Sorry again for the downer, just wanted to get this off my chest.

Best to all
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.

Hawk

I hear you, TGC!  Since this board is specifically for trying and suggesting ideas that can help, I will offer a few.

Do not be fooled into thinking that you are not in control.  You are the one with a brain, a plan, and the freedom to choose.  Even when Peyronies Disease is most aggressive, it is not a sophisticated enemy attacking with malice and strategies. 

You can still choose NOT to drink, which not only is likely to degrade your general health and worsen Peyronies Disease, but it is likely to give you more problems in addition to Peyronies Disease.  That is the last thing you need , and you are in charge.  Don't use Peyronies Disease as an excuse to stop making good choices in your life.  The ability to plan and make good choices is your one advantage.

Next, you have to fight this on two fronts.  One is physical (pain, deformity, etc.) the other is psychological (depression, withdrawal, etc.)  Since this is the Psychological solutions board, I will only say that several things can help with pain (NSAIDs, ALC, Heat/Cold, and time).

On the psychological front, you have the advantage of being in total control.  You might not be in total control of how much Peyronies Disease distorts your penis, but YOU control what it does to your mind and relationships.  Many men here have experienced a closer, more intimate relationship as they faced this challenge.  You get to decide.

The outcome will not be favorable if you choose to have your mood and mindset determined by Peyronies Disease or by chance.  However, if you are proactive and read the highlighted topics at the top of this board, you can come out of this far better than when your Peyronies Disease began.

It requires work on your part, but you and your GF are worth that.  The helps I mention put you in charge of the biggest challenge from Peyronies Disease.  Lives and relationships don't thrive or crumble from Peyronies Disease's effect on the penis.  They thrive or crumble based on the effect you choose to let them have on your mind.  You get to choose.

Best wishes, and let us know what you try and how it works.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
[url=http://www.peyroniesforum.net/index.php/topic,872.0.html]Hawk - Updated 10/27/18 - Peyronies Society Forums[/url]

Sonic

You just got some words of wisdom there from Hawk.

A key point he made is never to start bad habits. Don't let the disease drag you down like that.

Now is the time to focus on good habits. Start running again. Excercise is so so important as is the diet.

So steer clear from harmful stuff like alcohol and tobacco. These will only make you worse.
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.

TallyHacker

I have a preternaturally high libido, so, any squelching of normal sexual relations with my wife of nearly 25 years hits me, hard.

I'm nearing two weeks, post-op, now, to correct what developed into a 90-degree bend in my penis; while intercourse is proscribed, for now, it's only a matter of time, awaiting full healing and clearing from my doc/surgeon.

My wife and I couldn't have vaginal intercourse for over two years. We managed and, ultimately, both felt not only that we weren't actually suffering, but were developing greater intimacy and learning to enjoy the - albeit forced - variety.

While this may be cold comfort, given what you describe as your current situation and mindset, thereby, I've read that most people, at bottom, in order to be happy, just require a feeling of hope. This very board gave me that. Somebody private-messaged me, after my first posts, and said that he'd had the surgery (suggesting Xiaflex wasn't going to provide satisfactory results - which I now know enough with which to completely agree) and was happy with the results, as he expected that I'd be - so urged me towards just going in for the procedure.

I did wait out both the "maturing" of the plaques and COVID, then, went out of town for the specialist who could do this procedure, for me.

I would guess that, despite some loss of length, for which the surgeon unapologetically predicted was going to be a simple fact, I'll experience a full recovery of use and function, based on the progress, so far (no real pain, since release from the hospital).

I'd recommend figuring out the course of action towards a solution, for your issue, which may give you some hope, while finding the workarounds that are acceptable to you and your partner, until you find the resolve you seek.

I hope that all works out for you.

Use the resources. Do your research. Get the help. Feel better. I think you will, once you decide what you're going to do...and even better, once you do it.
12/19-tiny hardness,~dorsal/middle shaft, 1/2 down length). 1/20-erection pain. 3/20-diagnosis by urologist, confirmed Peyronies Disease. 4/20-fracture during intercourse; much worse-plaque along length,>curve. 8/20-stable, 90degrees. Age 60, 22 yrs. [url="//married.no"]married.No[/url] Erectile Dysfunction

beaulieu1008

Good luck. Thanks for the encouragung input. Let us know about your progress.

thegreycat

Well it's already a month later and I'm not sure I feel any better... 8 months in to this terrible thing and I just keep looking back on weeks/months gone by and wish I only felt as bad as I did then.

Part of my plan - I started VED 10 days ago. At this point I'm not sure I can see it helping - 10-15 minutes a day just seems low, especially with 10s holds. That's what, 25 minutes over 10 days? I probably get more than that during my NTE. But - I know that it's a marathon and not a sprint, and at least I'm doing *something* proactive.

I keep reading accounts of improvement via VED and getting so excited, but then I just wonder if they were lucky spontaneous improvements that just happened to coincide with VED use?

Pain has come back more as this continues to progress, it's now gotten to the point where the hinge is basically a taper of my left corpus cavernosum, causing a bulge on the right and a hinge curve on the left. My glans don't really inflate any more either and I've lost size. Ironically the pain isn't there, it's at at spot right atop and right underneath my glans which is a soft, round, flat area that is sensitive to touch, is getting bigger and can be felt from the underside too.

I'm just feeling like all I've got to do is this degrading, dehumanising pump in secret every day. I have to time it so that I get 15 or so minutes for setup and clean down and I just feel disgusting. I feel degraded ordering lube from Amazon because the Soma tube is running out, and I feel so inhuman and at the very pit of what it feels like to be a man at all, doing this god forsaken pump every day. I can't afford a RestoreX, I'm already paying for the VED in instalments.

The only plus to doing VED is seeing something that resembles my old penis in the chamber; relatively straight, glans inflated, girth closed to what it used to be.

My NTE and morning erections aren't as strong as they used to be, for sure because of the pain and the psychological element, but I am, nearly 11 weeks later since my 2nd doctors appointment (I was misdiagnosed in my 1st), still waiting on a Urologist referral to come through, despite them already fast-tracking it due to mental health concerns. The GP wouldn't prescribe me anything, no Pentox, no Cialis, because it was "up to the urologist".

I'm trying to quit drinking, I really am, but I just can't drop off to sleep well without it. My mind races, my heart races. I've found myself mastering the art of having some of the worst cries of my life in complete silence, whilst my partner sleeps next to me. I just feel like a lost cause, like I'm just coasting down until one day I just decide not to be here any more.

I'm trying to get out of bed on time so that I can at least go for a walk, but I am so deep in this darkness that I just... don't. By the time I've had any kind of meaningful sleep during the night I'm just so so so tired by the time my alarm goes off that I just can't. I'm getting maybe a couple of hours or super broken sleep. I've started having pretty significant nightmares and sleep paralysis too. I'm shattered.

My foot isn't getting any better, so I still can't go running. I loved running so much, it was my thing. I could run for hours and just lap up the miles. I was so fit. I feel like if I could just get running again and get my bloodflow up again, that'd be at least something. Even walking hurts at the moment.

So I guess that's where I'm at. Still in a really dark place. Getting darker.

I do appreciate your insight and reply, Hawk and others, thank you. I'm trying harder to choose to be in control, I really am. It just feels like every step I take up the hill, makes the hill get steeper.

Still just venting, it's nice to put down what's going on inside my head - will check back in next month.

Best to all
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

Firstly, I have been to the dark places you're in, I've been there very recently and it's only thanks to the suuport of loved ones, and starting antidepressants that I pulled myself out of that head space.

The following may not be for everyone, but it's how I'm dealing with it - you can either be a victim or a fighter. For me it's that simple.
I won't go into detail, because it's a long story, but I chose victim for too long and allowed myself to fall into hell.

One day, after weeks and weeks of endless depression, my dad looked me in the eye and said "the only person that will pull you out of this, is you."

That isn't the most PC thing to say these days granted, but it hit me hard in a good way.

It took time, and was hard, but I've been choosing fighter ever since.

We are at [email protected]#%ing war, and every battle is to be fought.

I'm In the UK like you, and Peyronies Disease, or any penis injury or issue that isn't penis cancer is basically dismissed. I've seen a urologist, 4 now, all in the UK, private and nhs, all have a wait and see approach. No one will give you pentox, and only some might give you cilas, but only if you're having Erectile Dysfunction issues.

Luckily, and this is where the fighting kicks in - we have options in our own hands.

Llyods pharmacy online will give you generic cialis 2.5 or 5mg daily. Just Google and fill out the online form. They prescribe it and you don't have to go to see a doctor, it's all done online. They delivered mine today. A monthly subscription for £45 per month.

As for pentox, I'm sourcing some online. Ive ordered from an online provider, if I'm not being scammed and it actually turns up I'll share the source in a pm to you.

The way I see it is the following, I'm going to use this to push me in life, make as much money as possible, work as hard as I can, I'll buy meds, if they don't work and it worsens then I'll pay for xia injections, if that fails, then f£&k it, I'll blow thousands on a private implant, never ending erections on tap!

Basically, all this is causing you anxiety, anxiety is the fear of the unknown and that of which we can't control, what I did just there was allow myself to be controlled by anxiety and to spell out the worst case scenerio, and I still had a solution. Do that for yourself, say to yourself "okay, what's the worst fear I have about the outcome of this, and then find a solution where you still have a life out of it." in my case it would be an expensive implant, yours might be different, but whatever it is, know its there for you even when anxiety tries to take over.

There is always hope, always a way forward. Go to your gp, get therapy, get antidepressants and find the strength to fight this. Those steps will prove much more beneficial than drinking.

We are both young, who knows what future treatments and solutions may come out. Work hard, baby steps, one day at a time. Make sure when you find your solution you're still in a good place to recieve it.

You will come out of this better than before if you choose to embrace the awful and difficult challenge it is rather than just lie down and surrender to it.

In short, bro, you got this. Pm me anytime, we are both in the UK, I'm on hand, we will get through it!
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 dude - that means a lot.

Appreciate you taking the time to reply.
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.

thegreycat

This post has become somewhat a "Monthly update" I guess.

So I'm 45 days into VED and, as per another post I made a few days ago, so far it has only gotten worse. Hoping that there's some intertia still going on and that the VED will start to turn things around soon. The first couple of weeks of VED use were higgledy piggledy practice weeks, so I doubt they've really contributed to anything.

I've settled into a comfortable routine using just the A cylinder now. I was using B, but I feel like that made things worse as it was stretching the good tissue, rather than targetting the bad. With the A cylinder, it feels like the good tissue hits the edges really quick, so the pressure gets concentrated on the bad tissue.

The part of the VED that doesn't fill out at all corresponds to where my plaques all are, so I'm hoping that I'm now actively targetting those areas.

I'm also about to start taking an antidepressant, as I'm just getting lower and lower. I'm the lowest I've ever been, for the longest period, and it's really making me not want to be here. I desperately need to get my head in a better place.

The GP wouldn't prescribe me Cialis until I'd seen a Uro, so I've gone and ordered it online. I feel like it's important to get blood back into my penis again without just relying on VED. With how good my penis appears to look when in the VED, I am wondering if I could just get some decent erections with Cialis, I might even be able to start having sex again, despite the pain. I desperately miss being intimate with my partner.

Quitting drinking isn't going well, but I am sleeping better recently.

On a plus note, I started running again. I still have foot problems but I'm taking it easy. The first time I ran again I actually ugly cried because I had these few little minutes where I was just moving like I used to, breathing hard and pushing like I used to. It silenced my mind in a way that just hasn't been possible since this nightmare began.

9 months in. 9 months since I discovered a single lump. Now there's three, and more recently (and concerning) a flaccid curve appearing, and a complete loss of my ability to get an erection apart from pathetic NTE's that are never full.

I do worry that the VED could be making it worse. I never pump full and I have only once or twice experienced pain (And immediately dialed it back!) but I just worry that it's somehow doing more harm than good.

Still no word on my Uro appointment. Nearly 17 weeks and counting. When I was originally referred, I only had one lump. Now I have three.

See you in a month I guess. Thanks for reading.
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.