I believe I have a minor case of peyronies (which used to be worse)...

[Rags]

I'm sorry for the very long post but this has been something I've carried with me for the past decade of my life and I rarely ever talk about... And I really am hoping to get some feedback from others who might be able to relate!

Just over ten years ago, at age 21, I had a one night stand with a girl I met while out and about partying in college. I was so drunk (near blackout state tbh) that I had trouble maintaining a full erection, but in that state of mind, I kept trying anyway... And I had slight pain a couple times when my penis bent, but nothing traumatic or so painful that it caused me immediate concern. But I remember at one point she tried to get on top, and my erection just wasn't hard enough... and there was some pain when it bent under her weight, and that, I think, is probably what did it. The pain wasn't grueling but I do remember saying "ouch" and we stopped trying shortly afterward. Pretty embarrassing and awkward!

But the real embarrassment came a couple days later when I began to notice a weird visual deformity in my penis... The skin in the middle of the shaft on top suddenly had little wiggly lines. I'll never forget the first time I noticed while sitting down on the toilet. I freaked out thinking it's an STD and went to my doctor. I don't mention the lines, I just say I want to get tested. Comes back clean, but over the next few weeks the lines become more prominent and I realize the skin around the shaft of my penis is "pinching" and tightening - the wiggly lines I saw are basically the skin sagging around the area where the shaft is narrowing. Almost like when an overweight person has surgery to remove fat and their skin sags... That was happening around the middle of my penis where the shaft seemed to be narrowing.

I'd say within a month I have a visible hourglass shape to my penis and in flaccid state the entire midsection is droopy. Looks like a figure 8 almost. Terrifying thing to go through!

This is before there's much info online about peyronies and I'm too embarrassed to see anyone about it so I just chalk it up to God knows what and move on with my life. Still have normal erections and am able to have sex luckily, and it's only in the flaccid state that it looks droopy and hourglass shaped, so I figure I'm the only one who has to deal with the shame of it. I did have occasional erections maintenance issues during sex (more on that below) but not consistent or bad enough that it really stood out much, or made sex difficult. Partner being on top seemed to be the only time it was an issue.

Occasionally over the next few years I get intermittent sharp pains in my penis, which if I had to guess were signs that the scar tissue was calcifying or perhaps even a sign that new blood vessels / veins / nerves were growing, as the hourglass shape seems to gradually stabilize and get less noticeable. By my mid to late 20s my flaccid penis no longer has an immediately noticeable / visible hourglass shape, but I can still tell that the top half is a bit more... Droopy? Less rigid? Definitely a bit less girth than I used to have, and even when erect I can feel a little more tightness around the center of my shaft where the hourglass used to form. And I don't know if it's related or not, but I also notice at some point that I don't seem to get morning wood anymore.

I never got a sharp crooked bend, thank God, but my penis *does* somewhat tilt to the left now, and didn't used to. It's really barely noticeable and could be worse.

My assumption is that through being fairly young, having a pretty healthy diet, and exercising regularly, my body was able to somewhat repair the damage by regenerating veins / vessels around the damaged tissue, which would explain why the hourglass shape improved and why I sometimes got weird pain sensations. I haven't gotten them in years now, but I remember one time being at work and I bent down in a squat position to grab something and it felt like someone had shot me in the groin for a split second.

I'm repeating myself but as mentioned above, Never had issues with sex per se but I did feel like it was harder for me to maintain erectiond at times, especially when the girl was on top (which makes sense since the blood flow would be decreased). Over time, this too has improved and I really don't have this issue much anymore, in fact the only issue I notice now is lack of morning wood, but during my mid 20s there were a few times I had trouble maintaining erections in certain positions.

Over these years more info on peyronies is online, and I become convinced it's what I have. I see people talk about cialis helping with blood flow. I finally gather the nerves to see a urologist just to get closure on my condition (and also at this point because of the occasional erection issue), and he takes a look and says it's possible I have mild peyronies but nothing much they can do that wouldn't have greater risk of downside. He basically said unless I'm having trouble with intercourse, not worth trying to mess with it.

I checked back in with him again a couple years ago as I'd heard new treatments were available, and at this point he told me a new young doctor with way more experience with peyronies was on staff and he would refer me to him. I made an appointment with this guy and he was a young kid right out of medical school. I could tell he thought I was being a hypochondriac. I think he saw that I was on anti anxiety meds at the time (no longer am) and just assumed I was crazy, but his whole demeanor really bothered me, as he essentially mocked me to my face for even thinking I had peyronies and said he sees people "with conditions that would make you so glad all you deal with is a bit of an hourglass." He told me it was possible I had some minor damage but I should just take viagra and be grateful, basically.

The thing is, his comments actually made me feel even worse and more frustrated because ultimately I really wanted an answer on what I had been through. I felt like he downplayed the absolute trauma I went through all those years in my 20s before the condition started to improve. I was also hoping to get ultrasounds done, just to know once and for all of there was scar tissue and to what extent.

At this point I don't know if it would be worth going back and requesting ultrasounds, or maybe trying to find a new doctor... Or if he's right and I should just count my blessings that the situation isn't worse.

The lack of morning wood is ongoing but I don't know if it's directly related. I no longer seem to have issues with erections, and I can tell my bloodflow in general has improved and the hourglassing isn't as bad, although I do still feel some tightness around the center of my shaft when I'm hard.

What do you guys think? Does what I went through sound like peyronies?

I saw a condition called hard flaccid that has similar symptoms... I *do* sometimes feel like my flaccid penis is harder / more narrow than before my injury, but there's also plenty of times when I'm lying down or peeing and it's droopier... So it's hard to say. When I go to pee I often notice the hourglass constriction is still kind of there, it's just not as noticeable as it once was, but I have definitely lost some thickness and I think that's why it appears "hard flaccid" simply because it's more constricted... But again, it's WAY better than ten years ago and probably something only i'd be able to tell from looking at it visually.

I just wanted to get advice and input from others here and see what you all thought...

Thanks!  

[Lostandsad]

To me, this sounds like it's more hard flaccid than Peyronie's. Peyronie's generally shows up with the symptoms of pain and curvature, and possibly erectile dysfunction. Hourglassing in the flaccid/semi-erect state seems more in line with hard flaccid as well. There are many people with hard flaccid, where their symptoms become alleviated once they lie down. And you said it becomes droopier when lying down, which makes me even more inclined to believe that is what you have. Some people with hard flaccid have a bit of urination problems as well.

I understand that some doctors/urologists can be assholes sometimes(I know mine kinda was, and just told me my Peyronie's urination problems are caused by anxiety). But from what you described, I really don't think you have Peyronie's. Your urologist could've been more empathetic for sure, but I agree that you should be counting your blessings here.

Edit: read through a bunch of your old posts, I am even more convinced that you do not have Peyronie's and you have hard flaccid

[Rags]

Thanks. I actually forgot I had posted here before, it's been a long time but for some reason it's been on my mind again recently.

Can hard flaccid cause any long term issues / are there ways a urologist can do ultrasound or other diagnostics to offer a proper diagnosis, or is it something that is still difficult to diagnosis and treat?

I had never even heard of hard flaccid until today, while researching advances in peyronies treatment, and I used to research peyronies a LOT...I feel like there's so much more info and open discussions surrounding these things now compared to even a decade ago when I first began experiencing issues and tried to find answers.  

[Rags]

To me, this sounds like it's more hard flaccid than Peyronie's. Peyronie's generally shows up with the symptoms of pain and curvature, and possibly erectile dysfunction. Hourglassing in the flaccid/semi-erect state seems more in line with hard flaccid as well. There are many people with hard flaccid, where their symptoms become alleviated once they lie down. And you said it becomes droopier when lying down, which makes me even more inclined to believe that is what you have. Some people with hard flaccid have a bit of urination problems as well.

I understand that some doctors/urologists can be assholes sometimes(I know mine kinda was, and just told me my Peyronie's urination problems are caused by anxiety). But from what you described, I really don't think you have Peyronie's. Your urologist could've been more empathetic for sure, but I agree that you should be counting your blessings here.

Edit: read through a bunch of your old posts, I am even more convinced that you do not have Peyronie's and you have hard flaccid

I just read some more about hard flaccid... I am really not sure what to think, because some symptoms match but others do not. I definitely don't have any issues with urinating, and I don't always have a "hard" flaccidness when standing up per se... sometimes it's more droopy and indents around the middle where the hourglass used to be more prominent... And in the past whenever I googled about hourglass penis shapes it seemed to be common among peyronies sufferers, but perhaps this is actually a separate disorder that people were just self diagnosing as peyronies for years?

The ONLY reason I'm really inclined to still think it could be peyronies is because I think the indent / hourglass shape in the middle is where my penis bent, and scar tissue formed around the inflammation. I don't think the injury was traumatic enough to cause serious bending, but it was enough for scar tissue to form which then restricted blood flow - essentially causing that area in the middle to be constricted. This seems like it would explain why, when erect, I can still feel a bit of tightness in this area, even though visually it's unnoticeable.

I guess what I'm saying is that I don't think it's that my penis is always "hard" in a flaccid state, but more-so that the blood flow in this region is more constricted by cartilage / plaque so that's why in a flaccid state it can appear stiff and rigid, although definitely not as much as a few years ago...in fact what I would say is not that it's always hard flaccid, but that in conditions that normally cause shrinkage for men - like cold weather, high blood pressure from too much caffeine, etc - that's when it appears extra hard flaccid and the hourglass in the middle becomes more visible, but it makes sense because the blood flow is restricted and that scar tissue in the middle is more prominent when there's less blood circulating in the tissue.

And I could be totally wrong but my assumption is that over time either my blood flow increased due to plaque deterioration, or vein growth (I definitely developed a more prominent vein along my shaft), or both of the above...it's really might and day compared to when I was in my early to mid 20s, when the middle of my penis (while flaccid) always looked like there was a string tied around the middle! Now I'm fortunate enough that it really only happens as in conditions like I mentioned above.

But either way, this gives me some more info to digest. Maybe I'll call my urologist and go back and ask him if he's aware of this condition and whether he could do some ultra sounds to help rule out scar tissue / peyronies? It seems like hard flaccid is not (yet) officially recognized by the medical community which kinda sucks and might make it more difficult to really get a clear answer on.

[Lostandsad]

There are guys like you with the same symptoms, and don't have Peyronie's disease. Sorry for the confusion, I know you don't have urination issues related to it, others do though.

What really leads me to believe that you don't have Peyronie's, is that you don't have a curvature or pain, which are the two main symptoms. After all these years, if you really did have Peyronie's, I think it would be obvious. If you had Peyronie's scarring or plaque, you would experience a good amount of pain(I believe this is typical in most cases, but not always)

There are people suffering from hard flaccid for 5-10 years, and your symptoms fall more in line with that. You can check the subreddit hard_flaccid. There are a bunch of guys there with similar hourglassing symptoms.

If you really want, go to a urologist and get a Doppler ultrasound with caverject. After almost a decade, if you do indeed have scarring or plaque, I'm sure it would show up by now. And as you said earlier, most of them don't even recognize hard flaccid or know what it is, so it will be tough for them to diagnose you(again, they will brush it off as anxiety/stress/it's in your head).

Edit: I don't think hard flaccid causes long term health issues, besides the long term mental anguish

[Rags]

Thanks for all your input, I do appreciate it.

Only time I felt pain was intermittently during the early stages, and not during sex itself but just randomly throughout the day. Often it seemed to happen in crouching / sitting positions, but who knows... It's such a weird thing overall to deal with and I wish the resources that exist now had existed back when I first began experiencing symptoms. I do remember coming across this forum at some point early on, but there wasn't much literature online or many other message boards like Reddit, and I definitely never heard of hard flaccid until today.

I checked out the subreddit you recommended but the top post there states hard flaccid isn't caused by injury, but rather constant tension in the pelvic floor. I still think mine is directly related to the injury / mild trauma sustained during intercourse - the symptoms started literally a day or two later - but perhaps there's some overlap and complexity to it that not even the guys on Reddit fully grasp yet.

Thanks again!

Edit - here's the reddit thread I am referring to https://www.reddit.com/r/Hard_Flaccid/comments/j860ab/how_hard_flaccid_works_explaining_your_symptoms/?utm_medium=android_app&utm_source=share

[Lostandsad]

Glad I can help. And nah, check Wikipedia. It can indeed be caused by injury. I believe yours was caused by that injury during sex. Many of those PEgym guys injure themselves from stuff like jelqing and end up going to that subreddit. Have to take what a lot of those guys say with a grain of salt though. Most of them are pelvic floor cheerleaders who gaslight others and say "it's cause you're not exercising enough" as a reason for not being cured. The truth is, no one knows of an actual cure for hard flaccid.