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Welcome to J Francois Eid, MD - Directly answering member questions in the "Medical Professionals" section below the Treatment boards.
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Author Topic: Reintroducing myself, with hope and concern  (Read 1457 times)

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nemo

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Reintroducing myself, with hope and concern
« on: July 24, 2021, 07:49:32 AM »

Hi guys, I'm Nemo - a long-time forum member. I just turned 50, but my first experience with Peyronie's goes all the way back to 2002, when I was 31. Unfortunately, I'm one of those guys that seems to have a flare every few years - no doubt tied to the fact that I have multiple auto-immune conditions.

Back in 2002, I had the "classic" case of Peyronie's. Detected a couple nodules, got diagnosed, then suddenly had maybe a 30-degree downward bend near the glans. Got on Topical Verapamil (which I think is a waste of time), but thankfully, a couple months later, the bend released. Since that point, I've been left with a slight tapering at the glans and some glans softness, but I will take that - I considered my Peyronie's behind me.

In 2008, I had a sudden bend accident with a less-than firm erection during sex, and shortly thereafter, noticed a couple slight indentations on the bottom side of my right corpora. Didn't cause any problems other than constant worry for about six months. Didn't feel any nodules at that time. After a few months, I stopped worrying.

To my absolute horror, in 2013, about the time I developed ulcerative colitis, I discovered two fresh nodules, right on the septum. I wasn't in a relationship, no accidents, nothing, just came out of nowhere. I immediately started Pentox, Ubiquinol, Cialis, all the usual supplements. These inflamed, softish, slightly achy nodules lasted for about a year before they started to fade. Even stranger, many months later, I noticed a deepening of the indentations from 2008, and I believe those nodules were an inflammation of this prior injury's scar tissue, and when they finally faded away, they were actually retracting and pulling on these indentations. More amazing still, after a few months, the indentations returned to normal. This whole process lasted until around 2017 - a whopping 3.5 years!

But here's why I post this in the "Accounts of Improvement" section. ... Sometime in 2017, I began a relationship and I noticed it was unusually difficult to penetrate my new girlfriend (with a 100% erection). I thought, "Man, she must be really tight" but a couple months later, I decided to measure my girth. Gentlemen, to my amazement, and for reasons I can't explain, I was shocked to discover my girth was larger than ever before in my life. I normally ran 5.75" girth in the very middle of my shaft, where it is thickest. Suddenly, I was measuring 6". And when I compared pictures from back in the day to then, the right corpora was clearly much larger.

Not only had the nodules faded at the septum, but the indentations in the right corpora had returned to a sort of normal, there was no pain whatsoever, and defying everything I've ever heard about Peyronie's, I was somehow bigger there than before. This seemed to keep improving, as I measured myself again in 2020 to find it was thicker still - this time measuring 6.25"!  I cannot explain it.  But I will tell you, the 4 years I've been with my girlfriend have been the most enjoyable sex, because I knew what it was like to fear for my penis, and was blissfully enjoying having that 3-year long slow torture of worry behind me. I was stable, and somehow bigger than before! (Let me add here, I have never believed in "penis enlargement," and still don't. I just know for some reason, my right corpora expanded beyond anything it had been before. As I said, I have no explanation why.)

So, why am I here. Simply put - I have a new nodule. Just discovered it a few days ago, bottom of right corpora, exactly where the bigger of my indentations is. I had felt a slight twinge of pain, and started feeling for nodules for the first time in a long time, and there it was. It's definitely new, and slightly achy.  Today, I relocated one of the prior nodules on the septum, from 2013. I don't know if it's inflamed, or just old scar tissue that took some searching to locate. But understandably, I am back in complete panic mode, wondering if this is the beginning of a multi-year process, new deformation of my penis, etc., etc., with end of the world thinking kicking in full force. What if it completely ruins me?

I've started some old Pentox I had, daily Cialis, and the supps, ALC, PLC, Citrulline. Trying to prevent myself from feeling for nodules fifteen times a day, as I swear, palpating them makes them feel achy and only causes worry.

But strangely, I hope my story provides some degree of hope. In 2002, when I first had Peyronie's, I thought it was the end of the world. And I recovered and went on to have years of great sex. In 2013, again, I thought it was the end of the world, and even though that episode lasted three anxiety ridden years, the nodules went away (seemingly) my penis regained it's former shape and strangely even got bigger in the middle. And I went on to have blissful sex for four great years.

So, today, I am scared, yes. Understandably. But I am also hopeful in a way I wasn't in 2001 or 2013. Because, twice in my life I've seen Peyronie's activate, but then also de-activate, with bright sunny days replacing the dark clouds of anxiety, for years at a time. My hope is that whatever I'm going through, I will again recover at some point and have more happy years. Somehow, I seem to have a non-traditional type of Peyronie's where I don't seem to get a typical plaque and eventual calcification - I get softish scarring that causes distortion and indentations, but then pretty much reverses itself to a large degree.

I hope my story gives some of you guys hope. In our darkest hours, try to account for the fact that there might indeed be sunnier days ahead. If the penis can change for the worse, it CAN change for the better. I've seen it. I've lived it. I'm praying for it to happen again.

I suspect I'll be posting here much more often for the foreseeable future. For the last three-four years, I haven't been around much, because I felt Peyronie's free. Sadly, I'm back.

Keep up the fight, guys.

Regards,
Nemo
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51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

nemo

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Re: Reintroducing myself, with hope and concern
« Reply #1 on: July 25, 2021, 08:09:13 AM »

Don't get me wrong, I'm scared to death about this new nodule! When my Peyronies Disease is active, I'm a basket case of anxiety and worst-case-scenario thinking. That's my automatic reaction. 

This time, however, I am simply armed with some prior experience that gives me reason to hope for better days because I've seen them emerge from dark clouds before. So, this gives me hope, and I hope it gives you all the same.

Regards,
Nemo
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51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

nemo

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Re: Reintroducing myself, with hope and concern
« Reply #2 on: July 30, 2021, 03:54:56 AM »

in 2013 and currently, I did absolutely nothing that would indicate damage. In 2013, I simply discovered a couple of nodules while peeing. This time, I noticed a slight flash of pain upon erection one day, and the next day started feeling for lesions and sure enough, found one exactly where the pain came from.

I will add this though, as it has to be mentioned. At almost the same time I had my flare in 2013, I was developing still undiagnosed Ulcerative Colitis. I didn't get diagnosed until 2015, but my symptoms started around the time of the Peyronies Disease flare. So, I think it's quite possible my body went into an auto-immune flare which resulted in both a Peyronies Disease flare and Ulcerative Colitis.

Moving forward to this experience, I've questioned whether the current flare may be the result of my COVID vaccine "poking the bear" of auto-immunity, because I'd gone 5-6 years of totally "inactive" Peyronies to that point.

But short answer, no - I can't trace any actions on my part that would have triggered either episode, such as drastic diet change, sex injury, etc. They just came out of the blue.

Thanks,
Nemo
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51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

nemo

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Re: Reintroducing myself, with hope and concern
« Reply #3 on: July 30, 2021, 02:35:36 PM »

I was definitely hitting oral sups - Argenine, Carnetine, as well as Pentox and Cialis in 2013-2016. They may have helped me - I just have no way of knowing.

Nemo
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51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

nemo

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Re: Reintroducing myself, with hope and concern
« Reply #4 on: August 20, 2021, 07:46:25 AM »

Sadly, I'm not an exerciser ... and during my flare in 2013, my stress level (because of the Peyronies Disease) was pretty high. I was also developing Ulcerative Colitis at that time, adding to my stress.
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51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

nemo

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Re: Reintroducing myself, with hope and concern
« Reply #5 on: September 08, 2021, 03:43:00 AM »

Hi, I'll try to answer some questions below.

- What's your current curvature?   I don't have any curvature, my problem right now is an indentation.
- What was your supplement dosage for each?   I recall in 2013 taking about 2 grams L-Arg and ACL a day, but soon dropped them in favor of only daily Cialis and Pentox.
- During the time prior to your improvement. What diet were you on? Were you consistent with it?   No specific diet for me.
- Did you exercise? I think that stagnant blood can cause issues. The supplements we take lower blood pressure, so I think it might be helpful to move our bodies to keep the blood flowing?   No, other than walking, I've never been an exerciser, unfortunately. So exercise played no role in my case.
- Personally, whenever I take Pentox, I feel pain soon (an hour or so) after. It hurts! Did you notice this?   No, I've never noticed any pain resulting from Pentox.
- What's your current regimen?   Right now I'm just taking daily Cialis and Pentox (2x per day).
- Congratulations on the girth.. I noticed that my right chamber was a lot of bigger. Somehow it has gone down to the same size as the left one now. So now I just have smaller penis that's in pain from time to time or most of the time.   Actually, I've come to learn that my girth increase is almost certainly due to a weakened tunica, which apparently some men get as they age. The tunica loses elasticity and results in girth expansion. I'm actually quite concerned about this, but I don't think there's anything I can do.
- I noticed that my phimosis resolved for a time when I was sexually active. I wonder if vaginal microbiome actually helps break down scar tissue? Too bad I don't have a girlfriend right now.   Interesting theory, but I have no idea. I have a girlfriend but am avoiding vaginal sex right now for fear of making my issues worse. Regardless, I can't imagine how anything in a vagina could penetrate to the tunica!

Hope this helps answer your questions.

nemo
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51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

nemo

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Re: Reintroducing myself, with hope and concern
« Reply #6 on: September 08, 2021, 05:44:42 AM »

Honestly, I just eat what I want. I have Ulcerative Colitis, and I stay thin regardless of what I eat. So I really don't feel my diet had anything to do with the recovery I made from my flare in 2013-2015. It seemed to just be on a really long, slow acute stage that eventually resolved and the nodules faded away. Likewise, one of the indentations from that episode is where my flare is now, and my diet hasn't changed. I just don't connect the two (diet and Peyronies Disease) in my experience.

Cialis is 5mg at bedtime.

nemo
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51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.
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