Journeying into the unknown and looking for guidance

[Event_Horizon]

Hi everyone, I have been reading the forum for about 4 months (since October) but now that I'm starting on a more vigorous treatment path, I wanted to join the forum and hopefully gain even more insight and hope. First of all, I am 24 years old and was diagnosed with Peyronie's disease on October 1, 2020. I have had the condition now for 6 months. The urologist who made my diagnosis described the condition as a "very minimal thickening on the tunica albuginea on the right side near the penile base."

My symptoms are generally mild. I have dull, sporadic pain in different locations in the penis when flaccid, especially near the base on the right side. I almost never have pain when erect. My curvature is approximately 4 degrees to the left (I think I had a 2 degree left curvature before, although I never measured). I found it odd that the curve was opposite to where the scarring was felt. I also have a slight indentation (~1-2 mm) on the right side near the base, with a soft lump just above the indentation visible in the flaccid state. There's a squishy cord which I believe is associated with a circumflex vein protruding from the indentation, and a set of veins around the lump which were not visible before.

I had an injury at the end of July 2020, when I masturbated in the prone position while wearing compression underwear. Though I had done this many times before when I was younger (stupidly), I stopped in my 20's. Unfortunately, the Pandemic was ongoing and I was depressed from the isolation, the inability to date (I had just started dating before the Pandemic), and the sadness of being separated from my friends, so I fell back into the habit as a coping mechanism. This particular time though, my penis was pointed to the right while flaccid in my underwear, causing it to bend upon erection. The event lasted probably <10 seconds, and I had painful urination for about 1.5 hours afterwards. The pain disappeared for about a month after. This was definitely the most regretted decision of my life, but I'm working on forgiving myself.

The first urologist I consulted suggested vitamin E for 90 days, telling me that there were no controlled trials showing its efficacy or inefficacy. He then gave me an article written by Dr. Levine and collaborators in 2006 as justification. Soon after, I found this forum and continued my research using more than just the articles I could find on medical archives. I am an aspiring scientist currently in graduate school, and I have found the medical literature on Peyronie's disease to be particularly frustrating.

About 2 weeks after my diagnosis, I started exhibiting significant erectile dysfunction: weak erections, slow to get erect, and almost complete inability to obtain an erection standing up. My original urologist thought this was psychological, but was supportive and prescribed daily Tadalafil 5 mg starting at the end of November (I insisted on daily Tadalafil for the anti-fibrotic benefits I learned about on this forum).

Today, I consulted an excellent urologist who is a leading researcher and professor of urology. He told me that the condition was usually permanent, but may improve. He noted that the difficulty of palpating my scar was a good sign that some remodeling may have already taken place, and then immediately ordered an erect ultrasound to evaluate my ED as well as search for the shape and structure of the scarring. He also suggested that I could try transdermal verapamil and pointed me toward ordering a VED.

My current treatment plan is daily Tadalafil 5 mg, L-Arginine 3x 1000 mg, CoQ10 2x 100 mg, and I will start VED 2x 15 minutes per day. I'd like to lose some weight (I'm about 5'10 (177 cm) and 175 lbs (79 kg), and I'd like to be closer to 163 (74)). I lift regularly and rowed competitively before the Pandemic took away gym access. Although I discussed this with the new urologist, I am not overly keen on going on Pentoxifylline, but not opposed to it. He did not think it was necessary and suggested to start with the VED.

My questions are: 1) Which VED is recommended? I will likely go the medical, 3 cylinder route, but I wasn't sure if there was a favorite brand on the forum. 2) I understand that over-pumping is to be avoided. Does that mean a 50% erection or less in the VED is sufficient to induce scar tissue remodeling? I have nocturnal erections, especially with Tadalafil, so that aspect of healing is still there. 3) Are there any other supplements, dietary adjustments, or lifestyle changes that are recommended? I'm more than happy to try anything, and I really think that I should attempt to completely eliminate masturbation and pornography as I managed to pull it off for 3 months two years ago and I never felt better in my life. I am hoping that course will help with the ED and the VED will keep the penis oxygenated if I "flat line" from the lack of stimulation.

I am single but hope to find the woman of my dreams in the next few years. While I know many wonderful women exist in the world and will be understanding, I'd like to recover and put this behind me so that I can experience sex for the first time without apprehension or fear. Like nearly everyone on this forum, I am scared, stressed, anxious, and often depressed by this condition. After making the appointment with the first urologist, I started seeing a psychologist who has been helping me with daily meditation exercises. He has recommended me to a specialist with more experience in men's sexual health, and I'm hoping he'll help me as well. My main problem is forum paralysis, reading medical journals like it's my job (when I should be reading other science journals for my job), and taking photos/ erection checking to evaluate progression/ regression.

In addition, nearly all of my closest friends know about my condition and my distress, I have been very open with my family, and I've even told the faculty members who are advising me. Every single one of my friends and family have been beyond supportive and they want to do everything they can to heal me, both in mind and body. My parents have been particularly understanding. Any advice or stories of encouragement are greatly appreciated, and I hope to one day encourage others with the story of my recovery. God bless you all in this fight. Every man and woman who has encountered this condition is in my prayers, and I wish nothing but happiness and healing to you all.

[Asphyxia]

You mentioned the curve is opposite to where the scarring is felt,are you sure its a scar, and that this is peyronies? Maybe a ligament damage, i havent searched much on it just hypothesizing
Definitely quit porn
Id say quit masturbation completely but maybe keep it to minimum.

Forum paralysis, i have it too, it caused me to make a post that might provide the information for lifestyle changes and adjusments which you asked about.

https://www.peyroniesforum.net/index.php/topic,14791.0.html?PHPSESSID=2sodhteuu6fhhhp4j6hh3iegb2

And it should make it easier for you and other people to communicate if you fill your signature line
https://www.peyroniesforum.net/index.php/topic,10819.0.html

Some basic info here, survival guide.
https://www.peyroniesforum.net/index.php/topic,3180.0.html

[Event_Horizon]

Hi Asphyxia, thank you for your message. I am sorry that life has brought you to this forum, but I'm glad you're here to help. I also hope you and everyone on this forum heals and gets back to the way they want to be soon. There's a lot of life to live and I want us all to enjoy it.

On ligament damage: I think it's an interesting question. I asked the second urologist about it (he's one of the chief editors of the American Journal of Urology with a focus on ED, so I assume he's quite knowledgable) and he told me that it's unlikely that I damaged either the suspensory or fundiform ligaments, and I'd likely see some significant shortening, a clear change in erection angle, and much more pain. He also said that the prone position would be more difficult to damage the ligaments since they are most vulnerable to a "pulling" motion.

Either way, I think the healing process is similar: scar tissue formation, stretching, remodeling, etc. with blood flow and time being the key. There are days when I swear the indentation is improving or the curve is straightening, but in a battle of mm and degrees, it's easy for the mind to play tricks. Erection quality seems to make a difference too.

Thank you for the signature line suggestion! Filled out. And I have read the survival guide many times. It's a great resource.

Any opinion on VEDs? I'm a bit nervous to get started given the stories of injuries, red dots, lymphatic problems, etc. I've seen on the forum. My urologist didn't give me any explicit warnings about levels of pumping, so I'm trying to understand the proper protocol.

I'll check out the lifestyle suggestions too. That's very helpful, and I wish you luck on your forum paralysis. I finally got a bit more work done this week and it helped my mood an even my erection frequency. The mental aspect of this issue is so tough, but we'll get through!

[D1990m]

I love ved. I bought a cheap one from Amazon and it does the job fine. It's my favorite therapy

[Asphyxia]

A damage to a ligament isnt necessarily so extreme to cause extreme symptoms, i think it varies, but then again im not too knowledgeable on it
Personally i wouldnt overlook the fact that the curve is opposite to the damaged area, its too bad that the ultrasound is in so long,
Whats weird is that ligament damage shouldnt take so long to heal
I dont think peyronies requires the same treatment untill the initial injury is resolved(if it does end up causing fibrosis), i wouldnt stretch a damaged ligament.

I found a post of someone with similar symptoms
https://www.peyroniesforum.net/index.php/topic,11481.0.html?PHPSESSID=2tjvnpbugk1jo6ame7bn04s2h6


I hope someone with more knowledge on this can come to your aid

[Event_Horizon]

I love ved. I bought a cheap one from Amazon and it does the job fine. It's my favorite therapy

Hi D1990m. Thanks for your message. I'm glad to hear that another young guy found benefit from the VED. I'm hopeful that it will speed things along in the right direction. Posts by people like Old Man and the many men he has helped with a VED have been a real source of hope for me, and I'm always happy to hear about others' successes.

[Event_Horizon]

Personally i wouldnt overlook the fact that the curve is opposite to the damaged area, its too bad that the ultrasound is in so long,
Whats weird is that ligament damage shouldnt take so long to heal
I dont think peyronies requires the same treatment untill the initial injury is resolved(if it does end up causing fibrosis), i wouldnt stretch a damaged ligament.

I found a post of someone with similar symptoms
https://www.peyroniesforum.net/index.php/topic,11481.0.html?PHPSESSID=2tjvnpbugk1jo6ame7bn04s2h6


I hope someone with more knowledge on this can come to your aid

Wow I sure hope I will have a story like this! I keep waiting for my "it's gone" post, but I'm going to keep pushing forward. I think there was some damage early on because I had more torsion in the flaccid state, which I haven't seen as much lately. Perhaps the ligament did heal and now it's taking some time to get back to full function? I heard that ligament damage takes a full year to remodel completely, although the majority of healing might take place in the first 3 months (as was the case for me).

Yeah the whole curve opposite lump thing continues to baffle me. In fact, it's what I hoped would free me of a Peyronie's diagnosis initially. The lump could be a hematoma, trapped blood, etc. Alas, I am here today. The ultrasound is a long way off, but honestly I'm kind of worried about it and okay with waiting. I would love to be given the "you don't have permanent ED" diagnosis; however, I'm worried that they'll find something very subtle wrong, just enough to cause a problem. I might luck out and they'll tell me that there's no scar tissue. If that's the case, then it might have remodeled and just requires more stretching over time (this gets into the whole Type I collagen vs. Type III vs. elastin issue, which I've read up on but will not pretend to understand). Hopefully the VED will come to the rescue there.

Either way, I have to push forward and hope for a complete recovery. I'm happy that other men who ended up requiring implants are generally happy with them. My psychologist (and I assume my urologist) would probably tell me that thinking about that option is probably needless worrying; however, there's some level of peace which comes from knowing that there's a floor to stop this free fall.