ÀlexBl progression post

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ÀlexBl

First progression post:

Hi guys!  ;D My name is Àlex, and I'm from Spain. I'm 23 years old, and two months ago, after a really prolonged erection (around 5 hours) I developed Peyronie's. I realized the presence of the curve and found out about this disease 1 month ago, but until now I wasn't sure I had Peyronie's. For the moment, my symptoms are very mild (no pain, slight curve, no hourglassing, no palpable plaque, only a ring-like structure around the penis that seems soft, so I don't think it's the plaque).
One month ago I went to take an ultrasound, but it didn't reveal anything, probably because the plaque is still very diffuse.
I would say that my curve is around 10-15. I can see that is slowly progressing, yesterday I noticed that after one month of no curve progression, the curve was a little bit more noticeable. Because I have not been able to find a good doctor that could help me with this, I decided that for the moment I will start with Pentox, two pills per day (I took it for the first time yesterday). In a week I will be visiting another urologist, this one supposedly more knowledgeable about Peyronie's. If this doctor can't help me neither, I will look for another one, until I find someone able to help me.
Psychologically, this thing has f""ked me very bad. I will start a master degree in two days, which was something that I was very happy about, and I feel I won't be able to enjoy it at all. In the past weeks I haven't been able to be fully happy, to enjoy anything at all. Despite this, I will do anything in my hands to not let this stupid condition destroy my life. This forum has helped me A LOT. Some of the posters around here (Hawk, Old Man, NeoV) seem to be very knowledgeable, and the mood of this forum is very comforting. I feel a lot of gratitude towards all of you. I will try to keep updating this post one time per month minimum, I think that a report of my progression will be useful to those who also have the disease. I will also be posting the list of the things I will be taking and using to battle this. The worst thing about all this is to not know what will happen with my life. Will this curve be so bad that I won't be able to experience sex anytime in my life? It is definitely a life-changing condition. If any of you wants to talk with me about this, don't hesitate and send me a PM. I will try to help in anything I can! Sorry for my English, I will hopefully get better at it soon.

Symptoms:

-Slight acquired curve: around 10-15. When flaccid it has also a very minor curve, and it points a little bit to the left.
-No pain, but upsetting feelings in the left corpora cavernosa that come and go. When I get erections this feeling is a little bit more noticeable, not pain, only a weird sensation.
-When I let my penis be semi-erect, sometimes it takes a weird shape. Not hourglassing, but it looks like the penis gets filled with blood in a weird order.
-Ring like structure that goes around the penis. Soft at touch, it doesn't look like it's the plaque. I have been researching in this forum and some other guys seem to have it too. It doesn't look like it's very significant.
-Presence of very thin and hard veins, very difficult to detect. Maybe these are normal, but because I hadn't noticed them before I prefer to add them here. The most noticeable of them all is at the left side of the penis, where the curve is. It looks like it goes from the top of the penis to the base. It doesn't hurt at all, but it looks suspicious.

Meds: For the moment only Pentox. In two days I will be living in Barcelona and I will be able to get a full treatment. If anyone would like to recommend me things to take, I will listen carefully to you!

Tools: For the moment I'm not using anything. When the doctor will diagnose me with Peyronies Disease, I hope I will be able to convince my parents to buy me a traction device and a VED. Are these tools useful at the onset of the disease? For the moment the curve is not very significant, but I guess that this things could help preventing it getting worse.
 

QuackAttack

Alex, get the Penimaster Pro and the SOMAerrect VED they will help at any stage, especially the early stage. Don't settle for anything other than the Penimaster Pro because it is the best traction device on the market. Not only does it provide the quality stretch of all rod traction devices, it has the comfort of the Phallosan Forte.

ÀlexBl

Hi QA! Thank you very much for the useful info! As soon as I get the diagnostic I will try to convince my parents (currently I don't have any money  >:(). As for the SOMAerrect VED, is this one compatible with 26 weeks protocol I've been reading and  hearing about? Thank you very much for the info!

QuackAttack

It is Old Man's VED of choice. Because it has 3 cylinders you can size it to your penis. A single cylinder will allow the curve to form due to the diameter of the cylinder.

ÀlexBl

OK, if Old Man says this is the right one, I will take it! Thanks for the info  ;D

ÀlexBl

Hi guys!  
So, less than a week has passed since I made the first official post on my progression, but I already have news to tell. First of all, I've finally seen a urologist who seemed much more informed about Peyronie's than the other ones. This one was familiar with Dr. Lue's and Dr. Levine's studies on Peyronie's, and for his curriculum and linkedin page, he seems a very competent professional (really good college with the highest mark), so I feel safe that I've finally found a doctor who knows about this. He told me that because my peyronie's was caused by a prolonged erection and not because of a wound or a hit, it would very probably be a mild case of peyronie's (fibrosis is caused by trapped blood in this case, and not by a wound). This would probably explain why a slight curve has appeared without pain, ED or palpable plaque. He told me that because my curve could stop there and not progress that much, I shouldn't start with heavy treatments already (injections, shocks, etc) because it could be a waste of time, money, and it could be more damaging instead of healing. So he told me to wait for three months to see if the curved progressed or something else happened, and then decide what to do. He also told me that in case that pain appeared, or the curve got much worse, I could see him immediately to start a treatment right away. Ok, I was fine with this. The problem is, that at the clinique where I visited him, the main treatment for Peyronie's was shockwave therapy plus use of traction device. I know that shockwave is not a very popular method around here (not because people say bad things about it, but because you guys don't seem to talk much about it), so what I was thinking to do is to visit two other doctors. One of them seems to have a lot of faith in Verapamil, which I understand is one of the best methods to prevent this disease to get worse according to Levine. About the other one, I don't know much about him, but he also seems to know a lot about Peyronie's. So for the moment, I'll be visiting this doctors, and then I will decide what to do. At this point of the disease it seems to me very difficult to start attacking it directly with heavy treatment, because the plaque doesn't "reveal" itself. I also know that every Peyronie's is "unique", and that a lot of you guys had also undetectable plaques.

Also, less than a week ago I started with my oral treatment, consisting of:

-Pentox (three pills a day): If you recommend me to take more, I will. I haven't noticed any side effects and I think I could take more of these.
-Vitamine E (one pill a day, 400 UI): Should I take more? You know more about this than me!  ;D
-L-Arginine (two pills twice a day, 2000 MG).

Tomorrow I'll look for Potaba, but I'm afraid it is more expensive. I also looked for CoQ10, but it was too much for my budget! I've discovered that I need prescription for Cialis, so until a doctor gets me one, I won't be able to buy it.

So: Guys, you know about this much more than I do. Do you think it's a good plan to talk with the other doctors to see what options do I have? The last doctor seemed to know about this, but I would prefer other treatments rather than shockwave therapy. My parents won't be very happy about it, because they think I'm getting too paranoid, but I'm confident I'll make them understand that Peyronie's is very complicated and that I need to have as many options I can have in my hands. Also, what do you think about my treatment plan? Should I include more things in it? (I know the answer is yes, but what should I add?). Should I stop taking some of this meds? Let me know, please, you'll be making me a huge favour! I'm only two months into this, I'm confident that if I start early with the right treatments I'll be well.

Àlex

QuackAttack

Alex,

Don't just start taking more Pentox. You don't know how your body will react to it. I had massive headaches from it.

Paolo

Can I recommend that guys get a digital blood pressure monitor whilst taking supplements and medications, at the very least it is useful for logging your BP so you know what is 'normal' for you.

I check mine twice a week and they are relatively cheap  :)
Whenever you find yourself on the side of the majority, it is time to pause and reflect.

Paolo

Hi ÀlexBl , I would make sure that the Vitamin E you take includes d-gamma for Peyronie's.

Substitute the L-Arginine for L-Citrulline (I take 1-3 grams) 2 hours before sleep. L-Citrulline also helps exercise performance/endurance as it boosts Nitric Oxide for 'better' blood flow.
Note:- The liver generally produces enough L-Arginine that it needs. L-Citrulline converts in the body to L-Arginine.
Don't mistake that taking more is 'better', that is not the case.

Be careful mixing supplements with Pentox, your blood pressure could drop, hence previous post on getting a blood pressure monitor  :)
Whenever you find yourself on the side of the majority, it is time to pause and reflect.

QuackAttack

Alex,

I would direct you to Dr. Sherry Rogers, MD. According to her, the research shows Vitamin E that doesn't have all 4 of the tocotrienols and all 4 of the tocopherols you are getting a synthetic product that will actually drive cancer.

NeoV

Hey dude! If I could take ONE supplement for Peyronie's, at this point it would be CoQ10. I do like Citrulline as well, but I think that treating something (weak erections) rather than the underlying cause is never a good practice long term. Go crazy on your diet and just take a few good supplements if any.

I agree with QuackAttack, synthetic vitamins are not a good idea. Try to get vitamin D and K and some calcium from natural sources. Very very critical for fibrosis.  

ÀlexBl

Hi guys! Thank you very much for all the helpful info. Paolo, I've taken into account your info regarding vitamine e, the pity is that I'm unable to find vitamine e with d-gamma! AlsO, QuackAttack, thanks for you info too, I will leave it at three pills of Pentox a day, for the moment. Finally, NeoV, I found CoQ10, but it's quite expensive here in Spain. I will consider taking it, though, if you recommend it so highly!
I will be uploading new info soon! Thanks again  ;)

QuackAttack

Alex,

Although I am not a fan of buying supplements at big box stores and I am not well versed on CoQ10, but I see several versions of it at Costco and Costco is located in Getafe and Sevilla if they are close by and you or your parents are members. So, you might get it cheeper there.

ÀlexBl

Third progression post:

Hi guys!  :) So, in two weeks it will be already three months since the accident that caused my Peyronie's. Because the effects were almost immediate, and considering that the normal progression timeline of Peyronies Disease lasts around 12 months, I like to think that I'm already almost 1/4 quarters in this situation. During this weeks, anything has happened, thankfully. My Peyronie's still the same: only a slight bend (I would say 15º), no pain, no ED, no hourglassing, no shrinkage, no palpable plaque... Only mild hard flaccid and the bend. I talked with another doctor who seemed to be even more specialised in Peyronie's than the last one. He told me that he thought that I had a very mild case, and as the other doctor, he thought that because the Peyronie's was triggered by one single prolonged erection, the effects would be very mild. He even thought that it was possible that by january I could already forget about this thing. I'm not as optimistic about this as he was, tho. Peyronie's seems to vary a lot from one case to another, but I guess it is possible that for now the symptoms are very mild, but I know that they can start to be more agressive at any moment.
He knew about every treatment that has been discussed in this forum, so he made me a prescription for cialis, which is the only major oral treatment that I'm not taking right now. He also told me that using a traction device would be a good idea, although he recommended me to use it only one hour a day. I told him that I had heard that four hours are required to really battle Peyronie's, but he told me that because for the moment I had a mild case, one hour was enough. I would probably make more questions around here (in the traction section) in order to discover how many hours are adequate for a case of peyronie's like mine. If the disease gets more agressive, I will also try VED.
So for the moment, and thanks to the nice comments of you guys, I'm taking:
-Pentox
-L-Arginine (considering to change it for citrulline)
-Vitamine E (i will probably not be taking more of these anymore)
-Cialis
-Propolis (what do you guys think about this one?)
I'm also considering taking CoQ10, because a lot of people are recommending it. The pity is that I think it's a little bit expensive here in Spain.  :(

So, for the moment I don't really have anything else to say! If any thing new happens, I will post about it as soon as I can. Good luck to everybody!  ;)



lessor

Alexbi how is your curve? Have it worsened since the day of injury or it is stable?
I have noticed a slight curve 10°-15° but it seems a little worse in the last days..Im afraid it will get worse
Do you avoid masturbating? My curve seems worse with a semi erection in your case you notice this?

ÀlexBl

Hi Lessor! I'm really sorry, I didn't see your message. For the moment everything is fine, the curve has not worsened, thankfully. The thing has remained exactly the same since around the middle of September. I have only had two main changes in my curve, the first one around midst August, when a little curve appeared, and then in the midst of September, when the curve very slightly worsened. I also have mild hard flaccid, which doesn't bother me very much, but I would really like to get rid of it. I don't feel pain, but once in a while I feel tenderness or upsetting feelings somewhere around my penis. Right now, for example, I feel a stinging feeling somewhere around my left cavernous body, which is getting me paranoid. These feelings normally disappear after some days and they don't come back, until a new upsetting different feeling appears. Because these are not painful I don't pay that much attention to them, but still, I would clearly prefer to not have them. I don't have exactly Peyronie's, or maybe it would be better to say that I don't have a classic case of Peyronies Disease because I got this via priapism, and priapism doesn't affect the tunica, just internal part of the cavernous body. I have talked with doctors and a guy who also got this via priapism, and it looks like priapism creates mild cases of something that resembles Peyronie's (a curve appears) but that it is not so bad.
So no, thankfully, everything remains the same, but I'm ready to strike back if something new happens. I haven't stop masturbating but I do it less frequently (I didn't do it that frequently before the injury, but now I do it less). About semi erection, my penis semi-erect combined with my hard flaccid creates definitely very weird shapes. Although it clearly has to do with my hard flaccid, when I masturbate and lose the erection after, the penis gets completely straight while it loses its blood, it looks like before the injury. If I get an erection and then lose it without masturbating, sometimes it gets really weird shapes, although I checked out and it all has to do with my hard flaccid. I hope I responded to your questions  ;). Soon I will post something new explaining how I started traction this month and a little bit more about my singular case. 99,99% guys around here have their tunica affected, but it looks like it's a little bit of scar tissue inside my left corpora cavernosa that's creating the curve for me. Hope it remains the same!

lessor


Ben.B

Hey Alex, thanks for the detailed account of your case. It's really been enlightening for me. So far, I think your case is the most similar to mine.

i started noticing my symptoms around 1.5 months ago when I woke up and had a left curve to my semi-erect penis. It was a minor curve (around 10-20 degrees) when the penis was around 60-70% erect. Since then, the only changes I've noticed is development of these thin very noticeable veins on the side of the curve (most noticeable when it's flaccid after an erection) and a constant slight curve to the left when its around 10-50% erect that seemed to appear only in the last week or two. Once it gets more erect than that it pretty much straightens out completely. The most obvious curving when its more erect than that only happens some mornings right after waking up and dont occur after that (I think it did once but I'm not sure).

There is also no palpable plaque (by either me nor 2 uros) nor is there pain. There is sometimes a mild almost unnoticable feeling that is hard to describe that feels almost like an ache mixed with an itch and is pretty much not bothersome at all. However, sometimes there seems to be a weird mild ache or tenderness after erection which I think is due to the thin veins (this feeling wasnt there before the veins appeared so I fhink the veins are the cause)

Like you, I also didn't have any injury. However, I do masturbate quite frequently — pretty much every day and sometimes more than once a day. However, now I think I'm going to reduce to like once every other day or so.

Sorry for writing so much, but I want to know how closely you relate to these symptoms. Since it's been a while since your latest post, could you give us an update on your condition and what new treatments you've turned to? Has your condition gotten stable, worse, or better? Also, when you mentioned your curves, you mean when they're fully erect right?

Thanks alot,
Ben

betterbend

Maybe i am responding to your earlier post,

Just because you are tolerating Pentox, doesnt mean to take more.  Its not always some is good, more is better.  Take the recommended dose.  Pentox overdosing can lead to GI bleeding and other problems.  

There are differing opinions, but greater than 400mg of vitamin E is possibly toxic, increases the risk of stroke.  Its not even well established that oral vitamin e helps.  

Switch to l-citrulline as somebody else mentioned.  You lose about 70% of the l-arginine in the liver when you take that orally.  Citrulline doesnt have that problem and converts 100% to arginine after it passes by the liver.
55 - Onset May 2017.  38 degree bend up.  Failed Xiaflex treatment.  Still functional so I decided to stop treatments.  Only take 400mg Co-Q10 and occasionally use Restorex

Thomas2

I'd like to warn and reassure you at the same time: I had mild Peyronie too, not palpable scar tissue. Many years later my condition has discretely worsened. I fell for the reassuring words of the urologists that told me not to worry, but here I am! So don't stand still thinking you are safe! What you went through is the proof your penis tend to repair wrongly, and the condition is likely to cause damage itself over time!

But I want to reassure you! You are acting! Unlike me! I did nothing for years, as long as you keep on monitoring and doing everything possible I am Shure you won't have to deal with the mind chrysis you went through again! Stay focused and keep up the good work!
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