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Author Topic: The reality of this disease  (Read 748 times)

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Lostandsad

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The reality of this disease
« on: September 17, 2021, 08:38:46 PM »

I find myself having trouble getting out of bed every single day since my symptoms started. If I have an alarm, I’ll keep snoozing it. Eventually I’ll have to wake up. The scars are pushing against my urethra, constantly making me feel the urge to urinate. I check these forums, not many new things going on. The best thing in the last couple of decades was Xiaflex? So disappointing. That Pentox study was retracted, not good news for us sufferers either. Then I force myself to eat a meal, and take all these supplements.

Now it’s time to warm up my penis with my heating pad. Then I have to lube up my penis to use the VED. My hands always get so greasy, and it’s so annoying and time consuming to wash the lube off. Now I take a little break, lube up again to use my PMP for traction. I hold off the urge to urinate until I can’t anymore. After I urinate, I have to wait until I get all the dribble out, but no matter what there’s still some left. Gotta put the PMP back on for more traction. I force myself to eat another meal again. Then later at night, I have to lube up again to use the VED. My hands are greasy as hell again, this is so tedious. Back to more traction, and browsing and searching for answers on the forums.

I dropped about 10-15 pounds lately due to the depression. It’s hard to enjoy anything anymore. I don’t even snack, or even think about buying snacks. Everything I used to once love, I just have zero interest in doing anymore. I don’t want to hang out with friends, I don’t even enjoy the occasional movie or binge watching of something on Netflix. I tried to work out again, but I can’t bring myself to do it consistently because of the depression. It’s extremely hard to be positive. I hate everything about this sad reality. My life is such a joke now, I really don’t know how to cope with this. I try to mentally train my brain and tell myself how I should be grateful for the things I have in my life, but nothing is helping me. If there is any sort of light at the end of the tunnel, I really hope I get to see it soon. Until then, everyday is just another rerun. I wake up to the same reality, rinse and repeat, sigh. Thanks for listening to my rant.
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MIA - nothing works after 5 months
supplements and pharmaceuticals I've tried:
cialis, pentox, magnesium chloride, dim, turmeric, hyaluronic acid, vitamin k2, paba, l-arginine, l-citrulline. either get surgery (and possible Erectile Dysfunction), get implant, or pray

GaussRifle

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Re: The reality of this disease
« Reply #1 on: September 17, 2021, 09:42:16 PM »

I totally understand what you are going through. I think we have all been in your spot. The key is to keep pushing ... sure you will have your dark days... I do too !  but keep pushing. If you think pmp is too much work,  shift to RestoreX for traction only a total of 1 hour needed a day split into two 30 minutes sessions.


And don't be too hard on yourself, treat yourself from time to time for fighting this crap. Remind yourself,  that you are doing everything in your power and your goal is to do treatments from least invasive to most invasive. Work your way up the treatments to find one that satisfies you and remind yourself this is a sprint not a marathon. For any treatment to work you gotta give it time and persistence.

Sending  prayers, good thoughts  and Strength 💪 your way.
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26 year old
45-50 degree downward curve with an indentation on one side when erect.
Using RestoreX and Xiaflex injections
Taking coq10 with daily Cialis 5mg.

Bud luck

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Re: The reality of this disease
« Reply #2 on: September 17, 2021, 10:23:13 PM »

I understand how you feel. This disease affects everyone differently. Urologists don't agree on what is the best treatment, that makes our disease more confusing
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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

Kobegianna

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Re: The reality of this disease
« Reply #3 on: September 17, 2021, 11:55:31 PM »

We are all going through the same thing. Your rant just described my whole day too.
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34 yrs Old, Healthy very active
Possibly injured penis or took too much Cialis
Symptoms starting January-February 2021
First dent seen April 4, 2021, painful erections

nemo

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Re: The reality of this disease
« Reply #4 on: September 18, 2021, 03:00:57 AM »

I hear you and I think many of us go through a bleak existence like this when we're in the throes of a Peyronies Disease flair (even if it's the one and only time you deal with Peyronies Disease in your life).

My last flair started in 2013, and I was on the boards here multiple times a day. Around about 2015, I was stable and seemed fine, and then no longer looked at the boards (maybe once a year) and resumed normal life. This current flair, which started in July, has me back on the boards multiple times a day. And like you, I check the boards for ... I don't really know why. Looking for hope. Some promising new treatment. Just to be with guys who are going through this. I'm not sure, but I spend lots of time here.

The key is to recognize that you are in a phase right now - the Peyronies Disease phase - of your life. This is not your life - this is a phase. You will come out the other side of it, and the odds are in your favor that when you so, you will be stable and able to have sex. If, for some reason, you are in the minority of men who are not able to have sex in the chronic stage, there are perfectly viable options, including implant.

So, though I know it's extremely hard to do, you have to try to step back and views this as a phase of your life. An unwelcome, really crappy phase, but only a phase. There are many people dealing with terminal illness, and that is not us. Be grateful, and resolve to power through this phase.

There are brighter days ahead.

nemo
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50 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred in 2013. Have now begun a third episode in 2021. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline.

markdubby

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Re: The reality of this disease
« Reply #5 on: September 18, 2021, 05:46:50 AM »

i know exaclty how you feel, and have been in the same spot at the start of my journey (back in february)

as many users say, this is a marathon, not a sprint and this will take a while to set in, but when it does and you come to the full acceptance of the disease it will get easier!

also you are just 6 weeks in, this is a relatively short time span to see any improvement from your routine. give it 3-4 months and you will undoubtedly see that things WILL get better. try to spend less time on here and focus on other aspects of life, this disease won't change from today to tomorrow so you might as well accept it and you will see that things will improve :)

stay strong!
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30, ~20-30 degrees right bend beginning of 02/2021. Small plaque under gland on right side of the shaft
04/21 Plaque right side under glans
07/21 plaque by base
25 deg curvature at base + narrowing
1.8 g Citrulline 2-3 g ALCAR, 6-8h daily with PMP

Mikel7

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Re: The reality of this disease
« Reply #6 on: September 18, 2021, 06:47:25 AM »

We all understand your thoughts and feelings of despair.  We know how awful it is , we feel your pain.  You have got to tell yourself that this is not going to last forever and that you will come through this! The fact that that you are doing something proactive shows that you are not too far gone.  Keep on keeping on and the road will get smoother.  Don't paint a gloomy picture in your mind of a bad outcome!  We are all here to support each other in this. 
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Lump April 2020, age 60 , Dr Levine 6-26-20,
Dorsal Curve 11-1-20 , Peyronies
Vit E400mg, COQ10, ALCAR, Heat Therapy, Penimaster, Pentox, Cialis
had SNHL 7-31-20 - Stopped all Meds because ototoxicity  Heat/traction/VED are working.

20yo

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Re: The reality of this disease
« Reply #7 on: September 18, 2021, 08:38:35 AM »

like many i also relate to your post
life lost its joy and a lot of the things i do feel like a useless task.

i have to admit, tho, that i am in a very different place than i was a year ago (i got Peyronies Disease around 1.5 years ago). i used to struggle to go out, not care about friends or university, i would just wish i would die everyday and be obsessed over what i lost.
now i am far from being content with my situation but i am going on with university, i am hanging out with friends ( a couple days ago i went hiking with a group and had genuine fun).
all of this, even tho my Peyronies Disease is getting worse still.

by saying this i mean to encourage you. yes the disease is full of uncertainty and it could improve like it could get worse anytime (do be very careful with VED and traction)
but what you can control a little more (not completely ofc) is your mindset, your line of thinking. and in my experience by just living, going on, it improves on its own.
i place less value on sex now than i used a year ago, i have some hope i will live a good life and find love even with my problems.

idk dude i'm trying really hard to be positive and live. I am also depressed and disappointed but what can I do.

P.S. with this reply i'm not trying to tell you "do better". it's just an encouragement. i understand your pain and in fact your post could be mine in the sense that i am in a similar situation. i think i'm a little better off mentally now but i used to be very depressed and hopeless
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20 yo, Peyronies Disease 2020(55 degrees down) + congenital curve
loss of length, stable erection, sensation. hourglassing
antioxidants, hyaluronic acid injected & oral, maybe Yachia in future
Recently started VED 2x a week
Still wants sex and a relationship

Hawk

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Re: The reality of this disease
« Reply #8 on: September 18, 2021, 11:39:02 PM »

As 20yr old's post indicates, my question to LostandSad is not that you had your rant; what do you intend to do.  You told us how you treat your penis, but since this is the psychological aspects board, how are you treating your depression?  Which of the suggestions and highlighted posts at the top of this board have you tried?

If you what things to change, then you have to do something different.
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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

Lostandsad

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Re: The reality of this disease
« Reply #9 on: September 19, 2021, 01:10:16 AM »

Many of the highlighted posts are about women and relationships, but that’s not an issue that I have, my gf is great and supportive. It’s just that my urinary issues are quite bad at the moment and I always gotta think about where the bathroom is. I don’t want to cross that bridge of wearing adult diapers, that’ll just depress me even more. When I hangout with friends I’m unhappy on the inside. I can’t just flip a switch and turn off the depression and become positive all of a sudden. If you put yourself in my shoes, I’m sure you would have had a really tough time in your early 30s if you had scarring that made you feel the urge to urinate every 10-20 minutes. That’s really debilitating, and I’m not sure how anyone is supposed to battle that. Especially when urologists just tell you things like “you’ve got scoped, there’s no stricture, bladder and prostate are totally fine, there’s nothing we can really do.” What else can I do besides my routine and spend my free time with my gf who supports me? Seeing a therapist or taking pills isn’t going to make these penis problems causing my depression magically go away. Sorry for another rant, but that is my reality. I wish there was more I could do for myself. Life was great before Peyronie’s, the hardest part of the day was figuring out what food I wanted to eat. Now the hardest part is getting out of bed to get the day started. Maybe this post is better suited for another part of the forum, since it’s not really a positive post, I’m not sure where though. As I mentioned in the implant part of the forum, I messaged Dr. Eid’s team, hopefully there is a possible solution for me.
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MIA - nothing works after 5 months
supplements and pharmaceuticals I've tried:
cialis, pentox, magnesium chloride, dim, turmeric, hyaluronic acid, vitamin k2, paba, l-arginine, l-citrulline. either get surgery (and possible Erectile Dysfunction), get implant, or pray

Kobegianna

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Re: The reality of this disease
« Reply #10 on: September 19, 2021, 01:21:58 AM »

You are only six weeks in. Hang in there. You aren’t the only one going through this hell. Rant, be angry, go through the emotions, you are not alone in this.
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34 yrs Old, Healthy very active
Possibly injured penis or took too much Cialis
Symptoms starting January-February 2021
First dent seen April 4, 2021, painful erections

Hawk

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Re: The reality of this disease
« Reply #11 on: September 19, 2021, 08:19:30 AM »

Many of the highlighted posts are about women and relationships, but that’s not an issue that I have,

You just made it clear you have NOT read the highlighted posts or made use of the resources they offer.
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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

Lostandsad

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Re: The reality of this disease
« Reply #12 on: September 19, 2021, 05:57:58 PM »

I get you’re trying to help… the last 4 highlights mainly talking about sex, relationships and women. The first two, yeah there are resources. But have you seen them? Like the Reddit depression sub, it’s just people like me posting their rants about how depressed they are. And trying to meditate is ridiculously hard when I have to urinate every 10-20 min, I can’t even focus. Yeah I don’t know, I’m gonna take a break from these forums for a while.
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MIA - nothing works after 5 months
supplements and pharmaceuticals I've tried:
cialis, pentox, magnesium chloride, dim, turmeric, hyaluronic acid, vitamin k2, paba, l-arginine, l-citrulline. either get surgery (and possible Erectile Dysfunction), get implant, or pray

Hawk

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Re: The reality of this disease
« Reply #13 on: September 19, 2021, 10:57:41 PM »

The first two, yeah there are resources. But have you seen them? Like the Reddit depression sub, it’s just people like me posting their rants about how depressed they are.

The question is, have YOU seen them?  Clearly not!  Pointless rants about how depressed people are, without a real effort to work, are NOT allowed here, much less did I highlight them.

I am at a loss.  Please show me the rant in either of the first two highlighted posts https://www.peyroniesforum.net/index.php/topic,13846.0.html

When you dismiss resources without even looking to see what the post says, much less following the links, much less trying the resource, it just makes everyone conclude you prefer to rant rather than read or work on your biggest problem.

No one, including the best psychologist in the world, can help you with a problem you have no commitment to work on.
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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

Lostandsad

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Re: The reality of this disease
« Reply #14 on: September 20, 2021, 01:49:52 AM »

First highlighted post, when you click depression forums, https://www.reddit.com/r/depression/ is #1, and it’s just people ranting, which I totally understand.

But yeah I don’t want to argue with you, you are absolutely right. I need the commitment to work on getting better.
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MIA - nothing works after 5 months
supplements and pharmaceuticals I've tried:
cialis, pentox, magnesium chloride, dim, turmeric, hyaluronic acid, vitamin k2, paba, l-arginine, l-citrulline. either get surgery (and possible Erectile Dysfunction), get implant, or pray

Hawk

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Re: The reality of this disease
« Reply #15 on: September 20, 2021, 09:22:10 AM »

If thee suicide Hotlines do not apply, and none of the 20 forums suit you because you think they are ALL ranting (and you don't like ranting),
Then go to the links I provided and give something a fair try.  One teaches meditation (free) and the other is an actual accredited free course from Yale University on the psychology of Wellbeing.  What more could you ask for?  I can personally vouch for both since I spent several weeks on both.

Otherwise, find a good Cognitive Behavioral Therapist because clearly, you are just going to dismiss any advice we offer and tell us how it won't work.

Face the fact that even your choice of screen name is embracing a label that is detrimental.  If you want to feel different mentally then you have to do something different.  Changes in thoughts and attitudes don't just happen.  They have to be learned, then cultivated through changes in behavior.

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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
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