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Author Topic: New member: current and new strategy in the works  (Read 109 times)

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HenH

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New member: current and new strategy in the works
« on: June 22, 2022, 07:05:17 AM »

Hello,

Just joined the forum to gain some more understanding of the disease and alternative strategies to prevent peyronie getting worse. I am not used to writing in English, so my first post are going to be a bit... rusty...

Who am I?
  • 34 year old
  • Living in the Netherlands
  • Healthy and fit - no (other) health issues / overweight
  • No relation - but just starting dating again
  • Active in sports
  • Enjoy my (busy) job
  • Mental very stable, although the diagnose tested my resilience level...

My story?

First noticeable symptoms
  • I’ve always had a normal curvature in my penis (I can’t remember it perfectly straight) but at around the age of 22 I noticed an aching pain on my penis.
  • During that time (if I remember correctly 1-2 months) a lump developed at the right side of my penis, starting at the top, going down to the underside of the penis. Like a C shape. Location mid peniel.
  • Although I did not measure the before situation, at the location of the lumb the penis bended slightly upward.
  • During the years that followed, the bend stayed the same. I can’t remember further inflammation / pain after that period. Strangely the lumb got noticeable smaller!
  • During that period the bend did make me unsecure, but noting unbearable.
  • Did not consult a doctor at that time and never googled what it could be.

New symptoms
  • At around age 33, November 2021, I noticed the aching pain had come back to the same spot and two new spots.
  • I then started googling what the lumb, pain and bend could be and found peyronies as a possible diagnose.
  • When I read that the curvature could get worse, I made an appointment with my doctor. At making the appointment a mentioned i want to be examed for peyronie, which the doctor later thanked me for, because he didn’t know the disease. He referred me to a specialized urologist for further diagnose.

Visit to the urologist
  • It took 2 months to get an appointment with the urologist.
  • The urologist asked me a lot of questions, like known family members with peyronie or dupuytren dissease.
  • After the medical exam (stretch length, feeling for lumbs and measuring bend on pictures of erected penis) the diagnose was peyronie.
  • The urologist took al lot of time to explain the disease (like the history, the population information (i have blue eyes.......), known causes, the limited possibility’s to heal this disease and the not proven strategy's like taking vit. E). The urologist also told that if things got worse, the only option is surgery, since xiaflex is withdrawn from the market in Europe.

Although the information was clear, it got me a bit terrified that it could get worse and there was not much that could be done.

Other information
  • Bend mid peniel, to above. At around 20 degree
  • Only pain during flaccid state. Lump more visible in flaccid state than in erected state.
  • One very large visible and noticeable lump (c shaped around the penis on the right side)
  • No hourglass effect.
  • Erection is ok, but time to hold erection seems to have decreased (could be psychological cause, see below)
  • Normal morning erections

Possible causes of my peyronie
Ive been thinking a lot about what could have caused my peyronie. My hypothesis:
  • cause of peyronie at age 22: sport related injury (I can pinpoint one situation) or masturbation/sex (I can pinpoint a few situations)
  • cause of peryonie at age 33: using a fleslight mastrubator, with not enough lube (the pain started a few hours after that).

I also suspect a mayor role for alcohol consumption. Although I do not remember at age 22 specifically, I was a student at that time and drinking a lot of alcohol at my fraternity. At age 33 the injury started just after a 2 day weekend with friends and heavy drinking...

Current treatment
  • The urologist prescribed Pentoxifylline (2x 400mg a day) and recommended to use the VDE 2 times a day (3x pump for 2 min for minimal 3 months)
  • Did not do any further investigation (which i regret...)
  • The VDE was not very easy and I lost motivation after 4 weeks and stopped (which i regret...)
  • 6 months after pain started (4 months after visit urologist) the aching pain was gone, only noticeable for a few hours after masturbation. The lump increased a bit and on the new spots a small lump was formed.
  • I don’t think the curvature got significantly worse, but did not measure because the follow up consult with the urologist was online.

Why I am here?
The last two weeks the aching pain has come back, despite that there was improvement after 6 months after the inital start in november. I don’t want the lump to get bigger and don’t want the bend to get worse. So I am going to do everything I can to prevent this.

Ive also started dating again and met a really nice girl. We had sex 2 times, but both times at the moment of penetration i couldn’t stay / get erected. Physically there is nothing wrong with my erection (morning erections, erection during kissing/foreplay), but there is a mental blockage related to the risk of new damage, pain for me and for here, and not able to penetrate (which should be physical possible at 20-30 degree....). So this is making me more insecure and are already nervous for this Saturday, while it should be a lot of fun...

My new strategy
My strategy to prevent further problems in the works:
  • Keep using Pentoxifylline 2x 400mg as prescribed
  • Restart VDE as prescribed
  • Eat healthy (I already eat very healthy but i am now going to be even more sharp on my diet).

I am also made an appointment with a homeopath to discuss further (alternative) treatment options (I will alert him on the litrature on Coenzym Q10 and L-arginine).

Questions
I hope that you made it this far, despite the long read. If you did, what topics do you recommend for me to read for my current and new treatment strategy, specifically:
  • Mental blockage during sex (losing erection at moment of penetration)
  • Experiences with homeopaths / homeopathic treatment

Any other tips and strategies which come to mind during reading my story are also welcome!

Thank you!
Logged
34 y/o, peyronie since 22 y/o, lump visable mid peniel, slight 20 degree bend upwards, recently pain came back, l, using Pentoxifylline and VED

Mikel7

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Re: New member: current and new strategy in the works
« Reply #1 on: June 23, 2022, 05:28:07 AM »

Welcome HenH to the forum!  Here you will find a lot of information and first hand experience from guys who have tried different approaches in dealing with this disease.  Thank you for filling out your signature line and your English is fine.  You should download and read the survival guide fo sure --> https://www.peyroniesforum.net/index.php/topic,3180.msg44057.html#msg44057 .  This guide will educate you more about the different treatments being used for peyronies.  You actually made a great first post!

It sounds like you do have some kind of anxiety issues related to your erections because of worrying about your peyronies getting worse. You will have to decide regarding sex if it hurts then don't do it. Also a homeopathic Dr may not be your best choice for curing peyronies. They can help you with your diet/lifestyle changes but the survival guide will give you all the info you need regarding these supplements.

I would say to stay with the VED therapy but look into the protocol suggested here in the forum. Also educate yourself on using a traction device.  The Restorex and Penimaster Pro are the two discussed devices here with some success. Also the actual inventor/creator of the Restorex is a forum moderator here - Dr Trost.  He also answers members questions.  The Pentoxi medication has mixed reviews as to whether it actually helps or not - it is a hit or miss.  You may also look into trying some low dose Cialis as this can be very healing to the penis and also increase your nightime erections.

Just remeber to keep in mind that this is a marathon type of race and it takes time and consistent effort. I have been doing traction on myself for about a year and a half now and it has prevented any further damage and has helped me regain some lost length.  Keeping your diet healthy is great because it will reduce inflammation and keep you at a normal weight feeling energized. Finally keep your emotions in balance about this and don't let your mind cause you to worry a lot about this.  :) Mikel7
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Lump April 2020, age 61 , Dr Levine 6-26-20,
Dorsal Curve 11-1-20 , Peyronies
Vit E400mg, COQ10, ALCAR, Heat Therapy, Penimaster, Pentox, Cialis, Restorex
had SNHL 7-31-20 - Stopped all Meds because ototoxicity  Heat/traction/VED are working.

HenH

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Re: New member: current and new strategy in the works
« Reply #2 on: June 24, 2022, 12:05:24 PM »

Hi Mikel7, thank you for helping me on my way on the forum and the first few tips. Making this lengthy post helps me to clear my mind and get some perspective.

For the anxiety issue: That’s correct. At the moment I just told her I was nervous. See has seen that I am capable of getting an erection, but at the penetration stage it deflates again. Anyhow, Sunday we meet again. I have decided that i am going with the flow. I am going to have a lot of fun and enjoy myself with her. I want to take the pressure of myself: if i get a solid erection, than we have penetrating sex and i just will notice if pain gets worse or not. If i am not able to penetrate, than it is as it is. Easier said than done, but that’s the mindset if have now. Difficult part, am I going to tell her about my diagnose, in this stage of dating? Will it scare her away?  :'(

The VED I find terrible! Scary! I know about the research and the low risk of damaging, but i find it really confronting to see the lump in the VED.

I agree on the homeopathic dr, but I will reply in the topic I created.

The Cialis i will discuss with my urologist, same for traction device.
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34 y/o, peyronie since 22 y/o, lump visable mid peniel, slight 20 degree bend upwards, recently pain came back, l, using Pentoxifylline and VED
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