Young, maybe in acute phase, puzzling symptoms - good or bad?

[Diagnosisanddespair]

Hi all,

This is going to be quite a wall of text. Long story short: I'm 23, and all but certain I have the early stages of Peyronie's. I'm beyond devastated, but seeing my GP again shortly, and going to really push for things like pentox if possible. However, I'm very confused about my symptoms in relation to the two phases of the disease, and I'm not sure if what I'm seeing is good news, bad news, or just peculiar.

So. A few months ago I changed the way I masturbated, to using my thumb and index finger just below the head of my penis. All way fine, then suddenly one day I had quite a bit of pain there. I reduced the frequency of masturbation, but pain didn't really subside. Noticed no other effects. However, I started to investigate online what it could be, and came across Peyronies Disease, and at that point noticed I had a curve. And this will sound ridiculous - but I'm not sure if the curve has always been there or not! The curve is just a little below the head of my penis, and it curves upwards when erect, maybe 10-30 degrees depending on how erect (more erect = more bend). I'm honestly not sure if that's always been the case and I just never noticed it before because it was "normal", or whether it was new. I still can't decide. I asked an ex, and she wasn't sure either. Either way, I have a curve, but it might have been there for ages.

After a month or so, went to see my doctor (GP, as I'm in the UK). He said he couldn't feel any lumps, and I was young to get Peyronies Disease (jesus, stop reminding me, that just makes it so much more painful...), and I should go a month without masturbating. I did so, and just today that month was up, so I tentatively tried masturbating. The good news is that the pain was 99% gone - at one point I had a slight twinge, but only for a passing moment, and otherwise all was painless. However, the curve seems solidly at 30 degrees now. Again, I can't decide if this is psychological or not. I can't feel any unusual lumps, but the entire "top side" of my penis feels slightly harder when flaccid than normal. By this I mean the side of the shaft that faces you when erect (rather than the side that 'faces' your feet, if you're standing up). But maybe it's always been that way? When I check my penis when flaccid, half the time I think "that feels normal", half the time I think "that's definitely harder than normal". I'm seeing my GP again next week, and I'll get his thoughts then.

So - I masturbated fine, but with a significant curve. I'm now 90% convinced this level of curve was never there before. I don't know from experience, but I'm guessing from looking at it 30 degrees wouldn't be *too* much of an issue for normal intercourse, though I'd like to hear from anyone with roughly this level of bend. What is sex at 30 degrees like? Also, when I stand up (rather than sitting to masturbate), I think the weight of my penis "pulls" the end down, and the bend goes down to more like 15 degrees, which would obviously be better for sex, but that induces a little pain. When I'm sitting there is no pain, but standing got a little bit of pain, I think because of gravity acting on the shaft of my penis. That's... worrying, but it's milder than it was before.

Anyway, about the phases. I know the acute phase of pain and bending is meant to last 12-18 months, but my pain has almost completely gone after 2 months, but I seem to have had a definite increase in bending. Half of me thinks: this is great news! Maybe it's all over! The pain has subsided! But half of me thinks: if this much bend happened in just 2 months, I'm absolutely doomed and should just end it all now.

SO:

The top of my penis (as in the side 'facing' the body when erect, and the full way from head down to base) might feel a little tougher than normal, but I'm not sure. I am 99% sure I have more bend than I've ever had before, but the pain has almost entirely subsided, though appears a little more when there is weight pushing my penis down. No ED, no lumps. Mentally oscillating between supremely suicidal and surprisingly stoic. Any advice or experience people could offer on trying to interpret this apparently "rapid" Peyronies Disease, followed by an almost-complete vanishing of the pain, would be great. As I say, seeing my GP this week, and I'm going to push for Pentox, as that really seems like the way to do from everything I've read. Many thanks for reading, everyone. If I do indeed have Peyronies Disease, I don't know how I'm going to ever deal with it. When I think about the possibility I did this "to myself", as mentioned in the early paragraphs, I just get such a red mist of rage at my own stupidity. I know rationally I had no way of knowing this might happen, but it doesn't make it any better.

Edit: I think this is the right forum, but I'm not sure. It's not so much Curvature or Peyronies Disease, as "is this Peyronies Disease or what does this mean?". If this is the wrong forum and a mod could move it, that would be great.

[NeoV]

Diagnosis,

Thanks for the detailed post. I'm 26 and am still in a kind of active phase. I Joined these forums only a week ago.

My case is somewhat like yours. I couldn't tell at first if the curve (upward also) was there before or not since I have a congenital curve. But then it became more and more obvious. The only thing I have been able to do to help my case is to stretch my penis and suspensory ligament. This has helped lessen the pressure on my penis during standing and alter the hinge point. I stretch out my suspensory ligament with what are called "fowfer stretches" with a pillow, and also did some light downward stretching to lengthen the upper part of my penis in order to make it appear straighter.

I have achieved greater straightness and smoothed out the curve considerably, however the deformity and loss of girth appears to have been unchanged. I am hoping to see further improvement since I only started these light stretches a few months ago.

You will not be able to feel your scar if it has not yet calcified. My scars are almost unnoticeable, yet the curve is obvious. I had many Uros tell me I didn't have peyronies at first.

I want to just straight out tell you to do light stretches and ligament stretches, but I don't want you to injure yourself and I am still figuring out what works best for me. So do be careful.

As an experiment at least, if standing causes hinging, try pulling your penis between your legs and under your butt and pull very very lightly as to feel a stretch in your ligament. Afterwards let me know if the deformity improves. I get an immediate improvement in comfort after doing this. Sometimes I use the edge of a chair or a pillow between my legs to do this while I sleep.

Don't blame yourself, I've been through that and it will push you over the edge. We have no choice but to move through this to whatever end it takes us. Charge into the darkness and own it. Regardless of what problems men face, we are given the opportunity to become their guardians.

You will find happiness.

Feel free to pm me if you ever want to chat about the psychological aspect or just anything.

-V  

[LWillisjr]

You will not be able to feel your scar if it has not yet calcified. My scars are almost unnoticeable, yet the curve is obvious. I had many Uros tell me I didn't have peyronies at first.

NeoV,
Just wanted to clarify. This isn't a black and white issue meaning if you can or can't. Scar tissue doesn't always have to be calcified in order to locate and feel it. My doctor showed me how to detect and feel mine during the acute phase and he confirmed it wasn't calcified. I don't want everyone thinking it has to be calcified to locate and feel it.

[NeoV]

Nice catch, didn't realize I wrote it out like that. I can actually feel mine but they are easy to confuse with veins or something else. Several uros tried to locate mine and failed to until a recent examination here in Tokyo. I should more accurately say, just because you cannot easily feel them it doesn't mean you don't have peyronies.

[Diagnosisanddespair]

V,

Your reply is really appreciated. Yeah, "more and more obvious" is the right way to put it - it's pretty apparent now. There's no way it's always been this curved. Re: these stretches, is this with or without an erection? Possibly a stupid question, as I assume with, as I can't imagine getting much of a stretch when flaccid, but maybe I'm wrong.

Re: curve/scar, that's very much my situation - I can't feel a scar when flaccid, though my penis definitely feels a little "harder", though maybe that's the same thing. I'm not sure. Very glad to hear these stretches have improved your curve, I may give them a try.

Also, thanks for the kind words. Last night was probably the worst night despair-wise I've had over the last two months. I just couldn't (and still can't) see a way out, even though I know something like pentox is very promising, and there's always surgery in the last resort, etc. That darkness just seems too dark. If my GP isn't willing to basically immediately give me Pentox, I'm going to look into getting a private consultation instead. Waiting around for it to get worse and worse is just too helpless, I have to do something. Thank you for the offer - depending on how things play out, I will take you up on it.

[NeoV]

Diagnosis,

The stretches are done flaccid, or with a very partial erection (just slightly filled with blood). Erect stretches can be very dangerous. However, while erect, slightly pushing down at the base of your penis in order to stretch the suspensory ligament has seemed to help me. Just be careful and make sure you push from very low on the penis as to stretch the ligament and not put any pressure on the penis itself. Really be careful with this if you try it out. I haven't had any problems but even so. Penis stretches are done flaccid in general, as well a the pillow "fowfer" which I mentioned. There may be a place for "erect bends", but the idea is ludicrous, considering that erect bending is what caused our deformity in the first place. I actually experiment with them in certain ways, but there is no way I am going to recommend it to anyone.

I'm really sorry to hear that, and I really feel your pain. Sometimes the pain is just too sharp. I live in Tokyo but I am a tall American. Since January I've felt so isolated here, although I am fluent in the language.

Yesterday at the gym, I suddenly froze up before a set. I was lifting in front of a large mirror and it hit me, thinking of my peyronies and who I am or appear to be. It was crushing to the point where all logic and direction was lost. Nothing made sense, but then out of my madness I came to one conclusion, which was that I had no choice but to finish my set. Peyronies will skew your perception of all sorts of things, don't trust those emotions. Move forward in anyway possible. If there is any end to this we will have to do so in order to find it.

I think you will feel better once on pentox. While you're waiting, I recommend buying some supplements, COQ10, Acetyl-L-Carnitine, vitamin D, and vitamin E. All of these have evidence to back up their usefulness. You could also try a microwaveable heat pad (I love these). They are so easy, and even if hypothermia treatment does not work, it will at least make you relaxed and can be used to warm up your penis before any kind of gentle stretching. Good luck, don't lose hope we are all right there with you.

-V

[Diagnosisanddespair]

V,

Got it. After a quick try, I see what you mean. However, I've ordered some Co Q10, L-Carnitine and L-Arginine on the way, and some Pentox (my GP didn't want to prescribe it, and frankly I refuse to wait to see a specialist or whatever whilst my potential for a future sex life decreases day by day, but happily that rare thing, the trustworthy internet pharmacy, is able to step in deal with that particular issue). Intend to get on them the next few days, and I'm going to save the stretches fro now.

It's weird you mention the gym. I hadn't even been to the gym until about a year ago (I'm a tall and skinny guy), but I was really starting to like my change in appearance, but now it all seems a bit pointless. At the same time, though, I know exercise can't be bad, and if I somehow get through this thing alive I'll be glad I kept putting the time in. It's a weird balance between feeling better from the post-gym endorphins, happily with my body, and so on, and that "I'm living a lie!" feeling you described perfectly. I keep oscillating between the two. I'm going to keep going, but it's sometimes hard to persuade myself to do so. We'll see how it pans out.

I tried Vit E, btw, but it appears to have given me over a week of severe diarrhoea, cramps, etc. Hopefully I won't respond to the three I listed at the top in the same way.

Another interesting (speaking academically) effect I've noticed is that in the last few days, my mindset has changed a few ways. It's like my mind is specifically trying to shield me from thinking about the full effect. Whenever I see my erect penis it just fills me with despair, and I've noticed just over the last few days that my libido has dropped to near 0; even the greatest of porn achieves very little; and I'm spending very little of my spare time thinking about sex, relationships, whatever. I know Peyronies Disease can often be associated with ED, but as I had a perfectly strong erection a week ago, I'm confident it has nothing to do with that (one assumes that kind of effect takes slightly longer than seven days). I've been surprisingly calm as well, and haven't had the pits of utter fury or utter anger I had a week ago. Assuming my rationale about why I feel this way is correct, I'm glad my mind is trying to shield me from it, as I don't know how I'd cope if I kept feeling like I did a week ago.

Lastly, a question - should I make sure I get regular erections for the sake of blood flow, or is it better not to? I've searched the forums and other websites, but I can't find a consensus on this. Were I to make a thread about the question, is there a particular subforum it should probably go in?

[egghead]

I wouldn't stretch manually at this point. But that's just my opinion. I've caused peyronies while trying to heal peyronies by manual stretching. I will be trying a VED soon.

I would focus on your diet and get rid of any processed foods.

Stop using deodorant. It's got aluminium in it.

Add 50mg of cialis per day to your list of drugs.

Get your testosterone up. Plenty of ways to do that naturally.

Don't drink or do any rec drugs.

Sleep 7hrs per day.

Stop stressing out. This is just a test of your will at this point. Get tough.

There is a good chance your body will resolve this on it's own if you take care of it. You're young.. My first issue came and went in my early 30s. But once it healed, I went right back to not taking care of myself.. and now it's got me again..

[Diagnosisanddespair]

Egghead, thanks for the reply.

- Why Cialis? I thought that was an ED-only drug.

- Interesting re: deodorant. I don't use it often anyway (I have strangely odorless sweat, which has been remarked upon by past partners), but why does aluminium matter?

- I don't drink or do any rec drugs or smoke anyway, so that's pretty easy.

- As I mentioned in the previous message, the stress thing is working out fine. I've become weirdly calm about the whole thing at the moment, even though I'm confident it's only my brain "forcing" me to be calm. Even thinking about it at length doesn't fill me with too much despair any more. Not that I'm not going to do everything in my power to deal with it, but it's not the soul-crushing horror it was a few weeks ago. I think maybe being single for a couple of years has helped - I've become very used to that life, and projecting that into the future (indefinitely?) no longer seems too nasty. And there's always surgery, if the worst comes to the worst.

- That's VERY interesting about your experience. If you'd be willing, could you say a bit more about that? Do you know what caused it? What effects did you have, did you do anything to combat them, and how long did they take to go away?  

[RoyHobbs]

I think he meant 5mg of Cialis daily and it increases blood flow so that's why it's good.

By the way, I don't want to sound like I'm advocating anything here but I specifically asked Dr. Lue if smoking weed would have a detrimental effect and he said no. And he asked me to cut down my drinking a little only because it might amplify the side effects of Pentox. But to each their own. I like a drink now and then and this disease is bad enough without losing some of the other pleasures in life.

[funnyfarm]

Add 50mg of cialis per day to your list of drugs.

Look out ladies, that is a very high dose !

[james1947]

50mg Cialis per day may be dangerous.
Taking in consideration the 36 hours half life time and that the adviced dosage for sex (by most experts) is 20mg I was reconsidering the decision.

James

[Skjaldborg]

Diagnosisanddespair,

There is a lot of information here on the forum. Most of it is useful and relevant, some of it not so useful or relevant to this disease, even if well intentioned. Always double check recommendations you see here with your urologist, ideally one with a good understanding about Peyronie's This is particularly true about medication doses.

I am compelled to comment on the aluminum issue: aluminum health risks have been suggested but not confirmed in numerous studies. Many of the studies concern neurotoxicity of the metal and diseases such as Alzheimer's disease. There are no studies or suggestions that aluminum consumption is related to Peyronie's disease at all, in any way shape or form. Use whatever deodorant or antiperspirant you want.

-Skjaldborg

[egghead]

Sorry for my extra 0. Yes, it's 5mg of cialis per day before you go to bed. Softens scar tissue and helps with nocturnal erections.

Alcohol in general will not help you heal. Increases blood pressure.. Beer specifically lowers testosterone. So does weed. Weed gives you bitch tits as proof.. At the most I'll have some clean vodka with seltzer. Red wine or 1 beer. I think my peyronies was triggered by hoppy beer induced low testosterone, sleep deprivation and major stress..  That's for both the first bout in my 30s and this one in my 40s...

The deodorant thing sounds nutts I know. I'm just thinking that all this crap we put in and on us for years is a huge failed experiment. Time to remove processed foods, metals and chemicals from the list for me. By the way, once you clean up your diet, you don't even need deodorant. Maybe some baby powder..

[funnyfarm]

You are correct about the deodorant, if your diet is clean you should not smell there at all.  The skin and especially armpit is essentially a waste port for the body, you will still sweat but no toxins = no odor.  ditto for your breath and making a no 2

Now you don't need all these chemical based hygiene products to smell your best !

[Skjaldborg]

You are correct about the deodorant, if your diet is clean you should not smell there at all.  

This statement is not scientifically rigorous. Body odor is due to bacteria on the skin surface that feeds on the substances produced by the body. Bad breath (halitosis) is similar, but can also be caused by bacterial plaques in the pits and crevices of the tonsils (known as tonsiloliths). While certain foods (like asparagus or garlic) can cause the body to undergo a change in odor, a "clean" or "chemical-free"  (whatever that is) diet will not eliminate body odor altogether. Remember: everything is a chemical. Some are beneficial and some are harmful, but just maligning things you don't like as "chemicals" is not intellectually fruitful.

Good hygiene (washing and bathing), wearing natural fibers that allow sweat to evaporate (thus providing fewer materials for bacteria to feed on) and overall healthy habits can help reduce symptoms of body odor, but they do so by actually reducing overall bacterial count or bacterial food sources.

-Skjald
(I'm off topic a bit, my apologies)

[Diagnosisanddespair]

Understood re: Cialis; for now I'm going to avoid that one, mainly because I have enough to be going on with and since it is an ED thing, I'm semi-reluctant to use it unless I really need to. Acetyl L-Carnitine and Coq10 have both arrived, and I'm taking the doses of them recommended by the various Peyronies studies out there. I have also been to see my GP, and he referred me to a urologist, but said he cannot prescribe Pentox no matter what. That means it'll be a while until I can see a urologist on the NHS (month or so, maybe?), so that should mean even longer without Pentox...

...however, I anticipated this, so after a lot of research into trustworthy places, I've acquired some Pentox off Riverpharmacy. It arrived in a week, is exactly what I ordered, no mysterious removals of money from my bank account, etc. Very happy with it. Since I know it can play with your digestion a little, and I've had a lot of stomach trouble the past few weeks, I'm going to take it with meals and build up to the 3x400mg dose with 1x and 2x for a few days each.

Bend doesn't seem to be progressing past 30/35 degrees. No pain when flaccid. When erect,  barely getting any pain, and when there is any it's quite mild. Seems to happen when I tense my pelvic muscles and more blood goes into my penis, but it's quite a dull pain, not like the sharper, stinging pain I had when this horror began. Still feeling oddly calm about the whole thing. Apparently at the consultation I'll have an erection "induced" (injection?) to check it is Peyronies (I can save you time, doctor - it is...) and then they'll go from there. Will take print-offs of studies, and will keep you all updated. It's really useful to be able to post developments and feelings about this stuff into the aether of the internet. I shall keep doing so...

[james1947]

Diagnosisanddespair

Not addressing your problems but thanks for the information regarding riverfarmacy and getting it into Europe without problems.
Did you pay import tax on it?

James