Peyronies Society Forums

Please login or register.

Login with username, password and session length
Advanced search  

News:

ALL Members PLEASE Add a Signature line with age, history etc
PROFILE -> FORUM PROFILE -> SIGNATURE
More instructions here -> Signature Line - History - Peyronies Society Forums

Pages: [1]   Go Down

Author Topic: Re-Injured myself, afraid surgery is now unavoidable  (Read 221 times)

0 Members and 1 Guest are viewing this topic.

Torontobased

  • Voting Member
  • **
  • Country: ca
  • Offline Offline
  • Gender: Male
  • Posts: 26
Re-Injured myself, afraid surgery is now unavoidable
« on: January 11, 2020, 04:41:04 PM »

This is my first time writing in this section, I am scared and full of shame and am becoming more and more desperate.

I have been in the active phase for 2 and a half years now. The first year and a half the changes were minor thinning on both sides of my penis, I was concerned but was still lucky my case was so mild. For the first year I had no treatment and likely was stil masturbating in harmful ways, I was on concerta with is a stimulant which none of the doctors saw a problem with me still taking despite me saying it impacted how often I got erect. I wasn't prescribed anything, I wasn't referred to anyone by my GP or the 4 walk in doctors I saw. My girlfriend at the time didn't notice a chance and thought I was freaking out over nothing, but I was seeing changes and a curve appear at times. It was only about a year later, once I did my own research and reached a point of desperation and asked to be put on pentox that my GP referred me to a urologist, which shocked me. If he didn't really know anything about the condition or treating it I don't understand why he would not refer me to someone who did. I waited three months to see the uro, he was the worst doctor I've seen. I went in and explained what was happening, he barely looked at me and at the end asked what I wanted to do about it. I was shocked again, as the patient I didn't think I was there to dictate treatment I was there for information and expertise from him. He said pentox had heavy side effects and shouldn't be taken lightly. Left without anything changing or being prescribed, went back a month and a half later to demand the pentox due to an abrupt worsening and he told me he had never prescribed it before and tried to put me on a waitlist to see another uro. Again, I was shocked that if he didn't know what he was talking about that he would pretend to know how to treat me and not immediately refer me. I was shocked because I knew how common pentox prescriptions are for peyronies and if he had never prescribed it clearly he has no idea about this condition. I got the prescriptions for cialis and pentox but only after telling him I couldn't wait any longer and didn't care if I bled out my eyes just give me the damn pills. I went to another well respected uro in the city after that, he examined me and stretched my penis and said it looks normal just wait and watch and live your life since your young. He asked me if that made me feel better, I said no because there's clearly something very wrong with me and if you can't tell that's far more concerning.

He sent me to another doctor, who thankfully seemed to know what he was talking about and asked me more questions than anyone else, but told me that oral medications don't do anything and that because my main issues were narrowing and girth/length loss xiaflex was unlikely to help me, and couldn't fully help me as not all my plaques were palpable. I had an ultrasounds months before at the first uro's hospital, but they didn't induce an erection, and didn't find anything of note. I asked him for an ultrasound, he said it was mostly an american thing that they unnecessarily charge for, but I wanted one anyways because I felt that by not inducing an erection it wasn't done right. Showed up at the hospital for the ultrasound, they did it exactly like the previous hospital, more reassurance but with nothing to justify being reassured. I asked about the interaction with concerta, as it reduced bloodflow and all the medications for peyronie's work by increasing blood flow, and he said he saw no conflict. I asked about traction and VED, he said sometimes they hep but not for most people and didn't bring it up on his own. The more I see him the more I feel all he's there to do if offers needles and surgery, he has excellent bedside manner but I have no more information about my condition and there seems to be no care or effort to learn more beside just offering me treatments when I get to the stable phase. I tried using the restorex on my own over that summer, and in hindsight it caused a lot more scarring and injury to the areas it clamped at. I tried the VED but it never seemed to inflate my penis in a healthy way, there would just be lots of pressure at the base and flesh around my penis sucked in no matter how well the seal was and it caused pain. I tried light manual traction but it seemed to increase negative effects and never stuck with it. Now I've lost perhaps half my girth, maybe an inch in length, and the one time I tried manual traction again for two days a month and a half ago seems to have reactivated an injury at the base of my penis that is now causing severe bending even when erect for the first time and instability in my erection. My size issue is now a function issue, and the xiaflex can't target that area. I was worried about that area being unstable and the only spot xiaflex couldn't possibly treat, and I feel I turned that into a self fulfilling prophecy. I'm in a lot of pain right now and each day the area wastes away more, bending more, and in every way I can't help but feel I've done this to myself and have destroyed my life. I kept going to the doctor's to get information to guide my treatment to avoid this, and they were so unhelpful and clearly not committed to understanding this condition past just injecting in the stable phase that I turned here for guidance but have had such a hard time making sense of all the conflicting information.

I feel like everything I've done to try and be proactive has significantly worsened my condition, which I already suspect was caused my harmful masturbation practices. Every time I've reached out to a doctor for information I've walked away with less. Coming on this forum shows so much information but none of it works for me or is ever confirmed in a practical setting. I feel discouraged form so many angles and don't know who or what to believe anymore. I no longer trust doctor's, I used to have a high amount of faith in the medical community but now I see how little even the nicest seeming doctors care for actually giving their patients any more info than they already have immediately on hand. If you want answers from them you need them before hand, they don't do anything for you unprompted and ultimately patients are far more responsibly for understanding they're condition and what they need than the doctor's are. I am worse for having listening to them, and yet also worse for not having listened to them by trying traction instead of just waiting. I feel like I have nothing to anchor me, nothing to make sense of what it happening to me. Like my life is no longer my life anymore, there's just a hole where it should be. It's affecting my work, my friendships, my family, I can barely eat or leave bed I feel so disgusted with my body and how it feels. I wake up and I am immediately disappointed that I have. All I have wanted was to avoid the surgery and regain some size while halting the progression. If it stopped where I was even two months ago I could been ok. I am scared of how much more I have to lose, even with surgery and IPP. I have kept my expectations low and they have continuously been dashed, I set them lower and still they get dashed. I used to be slightly above average and now I feel puny, and the only solutions are likely to leave me smaller and without natural erections.

I just want to feel ok again. I just want to feel I'm not waiting out the rest of my life hoping to die early. I could have spent this summer getting over my breakup from the past year and using what I had left but felt embarrassed by my stamina and unsure of how usable I still was, thought it better to be safe and wait to stabilize before risking sex with new people, and now that's certainly off the table. I feel paralyzed because any choice I seem to make harms me, whether it's waiting or taking action. 
Logged

Hawk

  • Bionic Penis 22cm Titan - Dr. Eid 8/7/18
  • Administrator
  • *****
  • Country: us
  • Online Online
  • Gender: Male
  • Posts: 4467
    • Peyronie's Disease
Re: Re-Injured myself, afraid surgery is now unavoidable
« Reply #1 on: January 11, 2020, 11:23:51 PM »

Try to calm yourself down.  Stress does not help you or your Peyronies Disease.  Since you have not filled out your signature line in our profile I do not know your age or other details but it seems you are single.

It is important to remember that what you think about what is happening is more powerful than what is actually happening.  I do not minimize your problem at all but telling yourself you have ruined and wasted your life only makes your mind and body react as if that were true.  It is not true.  If your life's goal is to be a porn star you may have complicated that path but even that is not out of the question.  Other meaningful aspects of life are certainly still in your grasp waiting for you to take charge and focus on them.

I will not spend much time on treatment here but rather than jumping from one thing to another formulate some simple basic improvements.

Have you read the Peyronies Survival Guide?

Please fill out your signature line in your profile.  It will help us help you.

Hawk
Logged
Prostatectomy 2004, radiation 2009, currently 68 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Eric_C

  • Voting Member
  • **
  • Country: gb
  • Offline Offline
  • Gender: Male
  • Posts: 42
Re: Re-Injured myself, afraid surgery is now unavoidable
« Reply #2 on: January 12, 2020, 05:18:06 AM »

Hi Toronto Based,

Sorry to hear about your negative experiences. I can relate to it all quite closely actually. There is such a gap between what you read here and what you experience with a urologist. It is massively stress-inducing, as it puts the patient in a bind - do what the doctor says, who we're taught to trust and honour - or, do what every One else is doing, as some of them are getting better.  It's a really tough situation to be in. How could we possibly have enough information to make the right decision here? How could anyone for that matter? Peyronies Disease is not a linear predictable process.

My first urologist told me to do nothing in the acute Phase. The second told me to get on VED. I tried VED and I made my condition significantly worse my penis is just wasting away now. Similar symptoms to yours. The hourglass area is so pronounced and it's eating up my entire shaft. I was content before VED. From what people said on here  VED is like this elixir... I didn't realise how real the prospect of getting worse was. So I am feeling what your feeling.  I feel like i made it worse through VED and caused a new acute phase with further deformity.  I also have a dent and sore spot near the base so my penis is like going through a chicane.  I haven't attempted intercourse but I'm guessing it's probably not going to be safe to do so now as it is unstable I think I Could Just Cause a rupture.

It's difficult to come to terms with. I'm trying to be optimistic, and say to myself when I am long out of the acute stage maybe I'll try again. But take any advice with a pinch of salt because even doctors do not understand this disease let alone people on the internet ...let them try whatever the hell they want it doesn't mean it will work for us.  I will not be trying traction or any other crap until I feel like it is safe to do so
Logged
Hard-Flaccid since 2014, (improved through massage of lower abdomen, but still present)
Peyronie's since April '19
Significant distal hour-glassing, Very assymetrical presentation. Age 38.

popopo

  • Major Contributor
  • ****
  • Country: nl
  • Offline Offline
  • Gender: Male
  • Posts: 608
Re: Re-Injured myself, afraid surgery is now unavoidable
« Reply #3 on: January 12, 2020, 08:15:39 AM »

Similair to my experience with VED. Some of us just don't react to it very well.
Logged
Age: 25
Date of onset: 17
Symptoms: sharp pains, numbness, change in shape/size, hourglassing and discolaration from jelqing/VED usage as a teen. Diagnosed with a venous leak and possible scarring.
Treatments tried: cialis, pentox and VED didnt help

JohnnyDoe

  • Voting Member
  • **
  • Country: nl
  • Offline Offline
  • Gender: Male
  • Posts: 69
Re: Re-Injured myself, afraid surgery is now unavoidable
« Reply #4 on: January 12, 2020, 10:29:15 PM »

Sucks to read these stories. I also agree that traction/VED does not work for everybody, at least not with the same protocols. Especially in the active phase I believe manual traction has harmed me. And I have done it in mildest form. Also since you are in pain, there is no way to judge what you are doing. I am more stable now and even now its hard to judge if it actually helps, very much doubt it. I do not plan on trying VED, because I think I am more in this boat than the one where active physical therapy does wonders. In my case: doing nothing, abstinence, avoiding heat, eating well and reducing mental stress helped with stabilizing and slightly improving things.
Logged

melting

  • Major Contributor
  • ****
  • Country: de
  • Offline Offline
  • Gender: Male
  • Posts: 496
Re: Re-Injured myself, afraid surgery is now unavoidable
« Reply #5 on: January 13, 2020, 09:10:51 AM »

Yeah well, not your fault that you're subject to socialist medicine. Seems like you guys in Canada have it even at least as worse as we in the EU. Good thing is the greatest country and system in the whole world, the United States of America, ain't far away, so that gives you some options..
I fear from your descriptions that the docs you had so far wont help you solve this. I think our doctors can only be used as in trying to get prescription drugs and diagnosis. Sometimes you have to lie to them or exaggerate to get what you need. Sad but yeah..

concerta - yes, low bloodflow to an injured or inflamed area - BAD! Simple logic which doctors don't get to cause, again, socialist medicine tells them what to do when and not human thinking.

Now, I said it many times, traction and VED are not necessarily good when you have an acute case/phase. That distinction should be common sense and be made generally. If you are inflamed, have some underlying issue that creates fibrosis/scars easily, manipulating the tissue with VED/traction will possibly make it worse. You wouldn't stretch an inflamed injured arm..

You wrote a lot about your emotions and mental state and most of us dealt with it. Key is to not let that override common sense, logic and having educated decisions. Need to be solution focused. If it's too much and overwhelming you might need to get a psych therapeut to talk with. I personally think doing something expressive in the sports or martial arts etc. vein helps a lot. Another issue is that this condition makes us tense down there making things worse and such helps.

Xiaflex and how our moron docs deal with it, in the EU we don't get it at all, I wouldn't exclude that a good uro in the US would possibly see that different. Also if you're in an active phase it might not show up on the doppler due to low calcification but it's still there and chemicals/supplements can reach it and can influence it. Verapamil injections another US option..

What can you do?
You need to bring down any inflamation, increase blood flow. Once you're stable and there's no inflammation you can use traction and VED(lightly!)

Now, cause like you, the urologist in my area give no option but "go home" or "let's cut the plaques out"(and destroy the penis) I did go full on DIY on my peyronies. You might be another case where transdermal applications might help. I always recommend dmso+ascorbic acid, not much you can do wrong with Vitamin C(but DMSO needs knowledge!), it's anitinflammatory and very important in healthy collagen production.

Important.. what other health issues do you have? What is your lifestyle, fitness, sedentary? Dealing with the fautly tissue is often just one part to solve this. Any underlying issues should be dealt with too. Ever head a big blood test?
Logged
Daily Transdermals and Traction/VED solved my Peyronies Disease https://www.peyroniesforum.net/index.php/topic,12587.0.html (DMSO+X)

melting

  • Major Contributor
  • ****
  • Country: de
  • Offline Offline
  • Gender: Male
  • Posts: 496
Re: Re-Injured myself, afraid surgery is now unavoidable
« Reply #6 on: January 13, 2020, 02:52:53 PM »

It's also hard to say when something is active phase or not. Lot's of grey area and highly individual. But we have several cases where traction or VED had a bad impact and worsened the condition, though of course the exact circumstances and intensities are probably a factor too. 
Often studies don't replicate real life situations but are in a controlled scenario..

Too early and you just stretch an open inflamed wound. Just right and you stretch a plaque into a more flexible state before you allow it to harden and grow/accumulate material in place. That would maybe be perfect. But how to gauge it? I guess making an educated guess on the state of the tissue and then probing carefully..

Quote
That said, if there is any pain, back off of the intensity or duration.
Yep but I would say if someone is in pain or feels inflamed before using traction/VED they shouldn't start it(yet). If you have pain after using traction or VED it's already too late maybe having a new injury/more inflammation that will result in a new or bigger plaque..
Logged
Daily Transdermals and Traction/VED solved my Peyronies Disease https://www.peyroniesforum.net/index.php/topic,12587.0.html (DMSO+X)

JohnnyDoe

  • Voting Member
  • **
  • Country: nl
  • Offline Offline
  • Gender: Male
  • Posts: 69
Re: Re-Injured myself, afraid surgery is now unavoidable
« Reply #7 on: January 14, 2020, 12:49:50 AM »

The reality is that when you are in the active phase, you are in constant pain even if you do not use traction. Also the effect of traction will only show slowly over time. How do you know you are actually creating more inflammation or reducing the curve?

Also after inflammation is gone, if you do traction you will feel some sort of pain. Again how do you know that this is helping or leading to a re-injury /another active phase?

From what I read, everybody has a different reaction to this. Some people seem to be able to do hours of traction per day. Others only a few minutes + need rest periods. Also, it seems like other factors such as diet, abdominal muscle tension among other things could have an effect on healing of the tissue in general.

For me this makes it very hard to go with traction without professional supervision/monitoring. Even though I believe that traction should be highly effective if done right, I have no idea how to do it effectively while mitigating risk properly.

Logged
Pages: [1]   Go Up
 

Related Topics

  Subject / Started by Replies Last post
10 Replies
2216 Views
Last post June 15, 2014, 06:29:55 PM
by james1947
4 Replies
807 Views
Last post February 03, 2017, 06:36:45 PM
by LWillisjr
3 Replies
704 Views
Last post October 11, 2018, 12:11:05 PM
by Hawk