Hate to need to be here

[Tiredofthis]

But appreciate that there's a solid community for this depressing condition. I hope I can draw support from those here to help me battle and hopefully beat this and in turn maybe help others.

I'm 41 and I started noticing symptoms in 2020. I'm not sure exactly when now it's been a while. I know for a fact that it was not brought on by any injury.

Some backstory:

I have been on methadone since 2018 and didn't know for a while what it was doing to my testosterone levels and hormones in general. I only knew it was destroying my libido and giving me ED. I went over a year or longer without getting an erection and the entire time my penis was turtled bad. I live in the US and don't have health insurance which prevented me from seeing a doctor. It wasn't until I was finally able to get my testosterone checked by a charity funded clinic that I got on TRT after my levels came back as basically chemically castrated (3 readings done. 47, 49, and 56 ng/Dl). It was then when almost immediately after starting TRT that I actually started having a functioning libido and when I saw my new (new to MY eyes) deformed erection. The worst part of it is I can't penetrate my wife. I'm completely convinced that the extended amount of time being turtled with no erections not even morning wood or anything led to developing the Peyronie's.

After reading more here and on Reddit I'm now concerned that I may have venous leakage in addition to the Peyronie's. Let me describe what I'm dealing with. I can get erections and keep them which makes me think I don't have a venous leak. But it's only the base of penis that gets extremely hard. Right up until the indentation on the right side of the shaft a little more than an inch up from the base. After the indentation I lose significant girth and it's tapered narrow to the end. And after the indentation no matter what it will NOT get hard enough to penetrate it's like always a semi and the glans also NEVER gets hard. No matter how turned on I am playing with my wife. The base can get extremely hard and stay hard and I can even get throbbing erections but after the indentation it's all floppy. Always. Not being able to penetrate my wife is driving me insane at this point. Any and all advice is extremely welcome. And I will continue to read up on here and Reddit.

I recently finally found a way to see a urologist and was diagnosed with Peyronie's. He asked me what I knew about it and told him I had done research and knew a fair amount about it and the treatment options. I mentioned possibly getting a traction device and he pretty much enthusiastically agreed with that approach. He also mentioned Xiaflex and at the time I was very interested in taking it. It wasn't until I did more research that I decided not to entertain Xiaflex as an option. All along it seems that the best means of recovery were accessible to me without a doctor, except for maybe Pentox. I will ask about that.

Here is what I am currently using for treatment:

- [ ] I just got the Restorex and started using it 5 days ago.
- [ ] A heating pad that I bought off the total man site since most heating pads out there are so big and go well above the upper recommended temp of 43 degrees C for the penis before potentially causing cell death. Though after reading more success stories on here I have to wonder how true that is, with some guys using the insanely hot hand warmers right on their unit.
- [ ] 5mg Cialis daily
- [ ] For months I have been taking several vitamins and minerals everyday including Vitamins E, C , D, B complex, 150mg P5P daily, fish oil, zinc, magnesium. Though after reading about vitamin E I realize I've been taking the synthetic version (dl-alpha) and have just bought the natural one (d-alpha). And thinking about the Tocotrienols type but don't see anything about using it to help combat Peyronie's. There seems to be very limited information about it other than it's supposedly superior in every way. There's no real dosage guidelines for Peyronie's that I could find.
- [ ] I have COq10 that I can start taking
I also want to incorporate a VED. I think it could be extremely beneficial for my case. My one requirement is it has to have a gauge. I have a curve of maybe 15-20 degrees mainly to the right and also a little up and that starts immediately after the indentation. What seems to be the main problem is the indentation on the right side a little more than an inch up from the base, then narrowing immediately following the indentation, and the soft glans. And overall loss of rigidity (other than the base before the indentation) that prevents penetration.  I am thinking of getting a leluv. My girth after the indentation is now only 5". I've read guides on picking a cylinder but would that apply to Peyronie's and my situation I wonder.

Does it sound like I have venous leakage?

Thanks for any help.
 

[Mikel7]

Welcome Tiredofthis to the forum. Thank you for filling out your signature line and if you haven't done so yet please study and rad our survival guide -->Survival Guide. This is our most comprehensive list of peyronies treatments.

Sorry to hear about your low testosterone as I can relate. I have been on full replacement for almost 20 years now and can remember all of the symptoms I experienced. No libido, shriveled penis, lost 80% of my strength and felt like I was at deaths door. Although not perfect, TRT is a lifesaver and will give you the renewed enthusiasm to continue in this life's journey.

Your symptoms are obviously peyronies related and the venous leakage would be difficult for a Dr to diagnose without an ultrasound. It does sound like you have a Dr that is willing to work with you on this. Most of us have had to deal with incompetent arrogant Dr's forcing us to find another one.

Your protocol that you have adopted looks good. First and foremost restoring your hormonal profile is a plus! The Cialis and traction will also help to heal and promote oxygen uptake to your penis. The supplement will not hurt you and may prove to be a benefit as they help with your body's inflammation levels and overall health. There is a lot of debate over supplements whether they help or not. Xiaflex is an option for certain candidates but I would state that it is only successful in the right Dr's hands. There is the possibility of no improvement at all with a very high cost $$ for some. Dr Trost has been one Dr with a very high success rate with Xiaflex as he has experience with it's usage. The heat therapy has been proven to help a lot of us men here. I personally benefited from it when I was in the acute stage. I used a heating pad on low with a bath towel to buffer the heat.

As you continue with your form of therapy you will see some improvements. The degree is unpredictable as we are all different. Hourg lassing and indentations take some time with traction and VED therapy and are difficult to predict. Restoring lost length is easier and girth will improve also.  One of the biggest obstacles to recovery is the mental anguish that peyronies causes. Getting a correct mindset about this is one key in preventing worry and stress. You can compare this to being a marathon and not a sprint. It takes time and patience and dedication into seeing results. As you read the forum you can see positive changes in the lives of many of us who have been dealing with this terrible disease. Welcome!  
  Mikel7  

 

[Sonic]

Sadly, indentations and narrowing are the hardest things to treat. There's very little picture evidence proof you can find of this online. Traction devices are probably a great tool to straighten a curve with time and patience but for indentations and girth loss it will probably do very little. I am also suffering from this and still in the same position 3 years later. I am starting to believe that this lost tissue will never be able to come back. I have an indentation that starts on the right side base and goes halfway up along the shaft. I don't think anything will ever make that tissue pop out again other than an implant.

[Tiredofthis]

Welcome Tiredofthis to the forum. Thank you for filling out your signature line and if you haven't done so yet please study and rad our survival guide -->Survival Guide. This is our most comprehensive list of peyronies treatments.

Thanks. Yeah I actually have a tab open with this so I'm reading it as I search around between here and Google/Reddit

Sorry to hear about your low testosterone as I can relate. I have been on full replacement for almost 20 years now and can remember all of the symptoms I experienced. No libido, shriveled penis, lost 80% of my strength and felt like I was at deaths door. Although not perfect, TRT is a lifesaver and will give you the renewed enthusiasm to continue in this life's journey.

Sorry I should have mentioned that I've been on TRT for almost 2 years now. I've had to become somewhat of my own endocrinologist due to idiot doctors that have no clue. Even the endocrinologist I was able to see was a complete joke. I take 180mg testosterone (sustanon) a week with Aromasin (I aromatize quite a bit apparently and have to take more than the usual guy to keep my levels on the upper part of normal) and HCG.

Yes the TRT has been life changing. I was extremely depressed and sometimes suicidal before. But the Peyronie's is taking its own toll on my mental health. And reading the second reply to this post here by Sonic honestly makes me feel anxiety and that I'm completely effed with this indentation and loss of tissue. I don't want an implant that will need to be replaced with all the potential problems and difficulty involved.

Your symptoms are obviously peyronies related and the venous leakage would be difficult for a Dr to diagnose without an ultrasound. It does sound like you have a Dr that is willing to work with you on this. Most of us have had to deal with incompetent arrogant Dr's forcing us to find another one.

Yeah the one good thing is the urologist that I have access to seems to be pretty good. I need to schedule another appointment to talk about my new approach to treatment. I've had really bad experiences with doctors in general so I'm not surprised at all with what you said. It's sad.

Your protocol that you have adopted looks good. First and foremost restoring your hormonal profile is a plus! The Cialis and traction will also help to heal and promote oxygen uptake to your penis. The supplement will not hurt you and may prove to be a benefit as they help with your body's inflammation levels and overall health. There is a lot of debate over supplements whether they help or not. Xiaflex is an option for certain candidates but I would state that it is only successful in the right Dr's hands. There is the possibility of no improvement at all with a very high cost $$ for some. Dr Trost has been one Dr with a very high success rate with Xiaflex as he has experience with it's usage.

This Dr Trost keeps sounding more amazing. I was impressed just by watching the videos on the Restorex website.

The heat therapy has been proven to help a lot of us men here. I personally benefited from it when I was in the acute stage. I used a heating pad on low with a bath towel to buffer the heat.

I wish I had acted in the acute stage. I have a lot of regrets. How long do you keep the heat applied in a session? How many sessions do you do?

One of the biggest obstacles to recovery is the mental anguish that peyronies causes.

I can get by and be patient with my treatment if I can have hope and progress. Even if it's slow progress. But if there's little to no chance to restore the tissue lost then I don't know if I will make it through this.

Hourg lassing and indentations take some time with traction and VED therapy and are difficult to predict.

Could you elaborate a bit more on what you mean by difficult to predict?

As you read the forum you can see positive changes in the lives of many of us who have been dealing with this terrible disease. Welcome!  
  Mikel7  

Thank you so much for the great reply

Sadly, indentations and narrowing are the hardest things to treat. There's very little picture evidence proof you can find of this online. Traction devices are probably a great tool to straighten a curve with time and patience but for indentations and girth loss it will probably do very little. I am also suffering from this and still in the same position 3 years later. I am starting to believe that this lost tissue will never be able to come back. I have an indentation that starts on the right side base and goes halfway up along the shaft. I don't think anything will ever make that tissue pop out again other than an implant.

Thank you for the reality check. This is hard to read but I appreciate it.  I will try to read what exactly you've tried to do for treatment and follow your posts and hope the very best for you.
 

[Andy_1492]

Welcome to the forum, sorry to hear about the issues you have been experiencing.

Has the Cialis helped at all and has your sensation been effected?

*should also add I am sure I have heard of instances of indentations being improved - if you refer to the improvements thread. NeoV comes to mind though I know his methods aren't for everyone.  

 

[Sonic]

Thank you for the reality check. This is hard to read but I appreciate it.  I will try to read what exactly you've tried to do for treatment and follow your posts and hope the very best for you.

Only thing I've done is take daily cialis at some points. I will try a VED, probably an LA pump since it comes with a gauge. If nothing works I'll end up with an implant. I have wanted to try restorex but that doesn't ship to my country.

[Tiredofthis]

That sucks that it doesn't ship to your country. I'm sure there's a way for you to get it from a 3rd party though although I wouldn't blame you for not wanting to do that.  

[Tiredofthis]

Welcome to the forum, sorry to hear about the issues you have been experiencing.

Has the Cialis helped at all and has your sensation been effected?

*should also add I am sure I have heard of instances of indentations being improved - if you refer to the improvements thread. NeoV comes to mind though I know his methods aren't for everyone.  

Thank you so much for the hope and I will definitely go to that thread next for hope and mental health improvement. My mental health as one would imagine isn't good right now.

Oh yeah I forgot to put in my OP that I have experienced a loss in sensitivity absolutely. On the glans which is perpetually soft. It seems to come and go in terms of how much of a loss but always a loss.

The Cialis has helped in getting blood flow to my penis. Noticeably. But nothing absolutely nothing will give me an erection capable of penetrating. I've taken viagra. I have pt-141 that I have yet to try.

Also forgot to mention that I do have Arginine and Citruline that I can start taking as well. The only thing I think that I lack in the oral's department is Pentox which I will need to get a prescription for.

Thanks again for your reply. It seems you also have something like what I have. I hope the best for you.  

[IwillbeatPD]

Hey bud!

Sorry to hear about your situation, but this is the best place you could be as we're all dealing with the same thing. Just wanted to give my two cents. As you'll read here I'd start with all the natural options with little to no risk and see if it helps. As Sonic mentioned, hourglassing and instability rarely resolves on its own. I have an identical situation as you. Generally I'm straight, but after the indentation and hinge my penis isn't rigid enough. With tadalafil I can have sex CAREFULLY but it's risky. I was hopeful I'd see some improvement but that just hasn't been the case over the last year, so I'll be looking to get an implant soon. Probably not the answer you want to hear but it's reality. Only thing I'd say is, if you're married and you can get to a point where you can be hard enough with pills, VED/cock rings etc...maybe you can be content with that and just have a modified sex life. However, I think you'll also find here many guys who did that for years but ultimately ended up with an implant, and regretted not doing it sooner.

Happy to help if you have any questions  

[Mikel7]

Yes it is true that most endocrinologists do not have a clue about TRT. I am also a high estrogen converter and was on arimidex for about 8 years along with HCG. I now only do the TRT with daily shallow IM and no longer use the arimidex or HCG.
As far as the heat therapy I used it for periods of 30 minutes for as many times throughout the day as needed. I did not burn myself and it did provide relief.I can say also that after 3 years of traction/VED I have almost regained back that which was lost. I still have about a 10* upward curve that i snot really that bad. I also had a small base indentation that has almost disappeared. I know that hourg glassing is way more difficult to completely resolve.