22 years old, diagnosed yesterday (6 months in)

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anthonyagn

Hi Everyone,
I'm lucky I found a forum like this since my world kindof got shattered yesterday when I went for my ultrasound and he confirmed my fears - that I do indeed have Peyronies :( In my experience forums like these usually help more than any doctor. So I thought I'd write as thouroughly as possible how my case went down to get the best kind of help and contribute some to others. I'm 22 years old and am very healthy, if that is useful to you. I do not smoke or take any drugs and very seldom drink alcohol.

Story
Approximately 6 months ago I found a supplement called DAA (D-Aspartic Acid) which is marketed as a weight lifting compound but which also increases the libido vastly. I've always been very sexually active and at the time had a girlfriend so I thought - fun, let's have more sex! - and we did. Probably three times a day for the two weeks the compound remained effective and I went around with almost constant boner for those weeks. Everything was just fun and games and I thought - heck I'm 22 nothing can bring me down. But F^@% that crap, peyronies can.

Maybe a week after that period I was masturbating in the shower and just thought - something feels weird with my penis.. It was like a bone had appeared along the whole shaft above the urinary tract. And it was really hurting. I thought maybe it was just overused and avoided sex for a few days with my girlfriend getting kind of confused about my behavior. I finally told her but she thought it was nothing to worry about. So we tried having sex again - but had to stop because of the pain. This got me a bit worried. But I stayed up all night googling and finally came to the conclusion that it was probably just a inflammed lymph and everyone recommended 1 month off from sex - so we did just that (which kind of drew us really far appart in the relationship too). One month (1 month in) later she was all excited that we would finally be able to have sex again. But I still felt that something was wrong, although the "hard vein" was gone. It still hurt and still wasn't really acting as normal even though I could achieve an erection. That month we have some sex but really didn't do it very much since it wasn't really comfortable. And then, finally (2 months in), we broke up (not at all because of the sex but i guess it got us thinking about what we really had except from that). We had the classic break up sex and that was the last time my penis worked decently for sex at all.

The month after the breakup (3 months in) I started sensing that something was really wrong with my penis. I didn't get morning erections and when I finally got any erection at all they were mostly really soft and it felt like blood couldn't reach the tip of the penis. Once again I blamed something else in my mind (maybe the breakup made me psychologically incapable of being aroused) - but that didn't explain the missed morning erections. So started searching the web once more but didn't find anything that matched except maybe some kind of inflamation. So I started eating Ibuprofen on a very irregular basis (which didn't work). I wasted one more month just hoping it would go away and focused on work instead.

Then finally (4,5 months in) I called the doctor about an appointment. I got there and discussed it with him and he decided to test me for sexual diseases and to feel my prostate. The blood looked fine but my prostate apparently felt a bit "mushy" which he concluded was probably a sign of inflammation and that it was probably the source of all my problems. He also booked me on a ultrasound just in case but I had to postpone the date on that since I was going to India for a month. Relieved I got home almost crying from happiness and started another, more consistent, Ibuprofen-treatment. This time I saw some improvements - I got the morning erections most days and the erections were almost full. I thought - when the inflammation is over it will all be perfect again. But no - as soon as I laid off the Ibuprofen the symptoms were back in a few days. And since then it has been unbearable. I never get erections, not even lame ones. I can achieve ejaculation, although I almost get no pleasure from the masturbation itself or the actual climax. And my penis feels tiny when flacid.

Yesterday (6 months in) i made the ultrasound. Even before beginning when I had just explained all symptoms the doctor said that it might be peyronies and then the ultrasound confirmed it. Apparently it is in the center of the penis and that's why I don't experience any bend. Ha said he would send the information to the previous doctor and that he would then proceed with getting me a urologist. And that is where I am right now.

I feel like crap and like my life will never be the same. What if I can never have spontaneous sex again? What if it never gets back to its' original size? I just want to cry and I don't know what to do. What is my best starting procedures? I thought I'd order L-Arginine the next time I order my bodybuildning-supps but the other supplements you are recommending on the "acute-phase-cure" might be harder to get here in Sweden.

If you have any recommendations I'd be so happy. What supplements makes the most difference. I promise to give back to the community as much as I can. And I will continue to update you with my progress.

Thanks so much for reading.

Best regards, Me
Location: Sweden
Age: 22

welshwales

Hi Anthonygn,

It sounds like you've had a pretty rough time of it, and I think it is something that many of us can relate to. It's crappy that you have Peyronies Disease, but at least you know what it is and can begin to do something about it before it progresses further, because to put it bluntly, it is very likely to get worse without treatment.
Look up: Pentox, daily low-dose cialis, VED therapy, Xiaflex injections. It's all here on the forum. Many other guys will add further supplements/treatments to the list, but those are the bare bones basics. It's up to you to decide on what form of treatment you will pursue, read the evidence and user-testimonies to help you choose.
As for the fact that you don't have any bend, it's most likely because you are only 6 months in, not because of the placement of the fibrous tissue. My first lump was pretty much bang on central, and there was no bend for about a year, then it began to hourglass, and then tilt to the right. The fibrotic tissue can carry on growing, and further lumps can also develop. Penile atrophy and erectile dysfunction are a reality with this condition. This is why you need to act. Leaving things be to see what happens is the worst thing you could possibly do.

NeoV

Yo Anthony, welcome to the boards. I'm sorry beyond words you have found yourself in this situation, but believe it or not, you can learn a some things from having the disease that you may have not otherwise.

I agree that pentox and low dose cialis is a good idea, also ALCAR (powder form is cheap), and CoQ10 daily. Alternatively to cialis/viagra, take arginine or citrulline for harder erections. The hard part is taking these supplements/drugs long term and not slipping up and stopping them. The same goes for exercise etc. Peyronie's, or any serious trauma or issue in your life requires 100% commitment.

I also took D-aspartic acid years ago as well but we have no reason to suspect this has anything to do with Peyronie's. But as you say, taking it, placebo or not, made you feel more like having more sex.

You can have spontaneous sex again, but it may be a bit different. You may or may not get your size back but we know from studies that things like traction, VED, and supplements/drugs can restore your penis to a healthier state (if done right). There's no reason to lose hope. I also have a "mushy" prostate, whatever that means, and for some odd reason it always seemed connected to my Peyronie's.

You are young, I was 24 when it hit me but I had symptoms since 18. Since then I learned how to NOT have inflammatory episodes, and had a lot of improvement to the point where you can hardly tell I have the disease.

Jonbinspain

You need to see the Urologist ASAP. I would agree with most of what's been said. However, be careful with DAA. It raises Aromatase. Aromatase is what causes the body to convert Testosterone to Estrogen, which is something you don't want. At your young age it will not be too much of a problem, but just be aware of it.

anthonyagn

Wow, you guys are just amazing. It literally means the world to me that you answered. I cried myself to sleep yesterday since my parents keep asking me why I'm so low (I'm usually happy all the time) and I still haven't told them about the result on the ultrasound. But waking up and seeing all your answers made me warm inside. I've been spending all my extra time trying to read up on all the medications and tips from people but still have some questions below.

@welshwales - I'm gonna try to get Pentox as fast as possible. The dosage is 400mg three times a day - is that correct and will it have side effects to my weightlifting?
- Since I have not been contacted by the urologist yet I was thinking about buying it from goldpharma - is that a good idea?
- And also - is there any difference between the more expensive Trental and the "copy" brands?
- Can there be any negative consequences from using a VED during the "acute" phase?
- Cialis is insanely expensive from what I can see. What is the normal price and how much is "low-dose" - 2,5mg?

@NeoV - I'm gonna buy ALCAR, L-Arginine and CoQ10 immediately and I will commit 100% since my penis, right now, feels almost like an amputated organ that has almost no sense and is constantly cold. The fact that you have overcome both inflammation and other symptoms gives me hope and if you have a link to it somewhere I would love to read the full story. What worked best for you?

@Jonbinspain - I will never go near DAA again whether it did have any effect on the peyronies or not. But thanks for the warning.

Thank all of you
Location: Sweden
Age: 22

Jonbinspain

To be clear, DAA does raise testosterone levels. However, it has also been found to stir the Aromatase enzyme.  So, as you raise testosterone levels, you are also raising Estrogen levels.  In other words a good part of the raised testosterone will be converted by the body to Estrogen. It shouldn't be a massive problem for someone your age.

In short, DAA certainly will raise testosterone levels, but f you want to keep using it you should  consider using it in conjunction with an Aromatase inhibitor to keep the body from raising Estrogen levels. Alternatively, try another testosterone booster such as Tribulus, or Longjack.  

NeoV

I think we've all done a lot of crying..
I recommend Citrulline in powder form instead of Arginine, along with ALCAR in powder form (both from the same company).

You definitely should see a true specialist. See an expert, and get yet another opinion if you like.

My thread on my improvement is here, and it's getting a bit outdated already:
My self treatment and recovery - Peyronies Society Forums


anthonyagn

@Jonbinspan - Yes, that was the conclusion I came to aswell when I tried it and in my opinion I really did feel something even though it was not major. But since the injury and also reading about some prostate problems related to continued DAA use I've decided not to use it again. I did try tribulus but it was to hard on my stomach and my poop became green so I'm not quite sure of that either.

@NeoV - Thank you! I will go with Citrulline, ALC (I guess all types of Acetyl-L-Carnitine are the same) and E-Vitamin from the same supplier and then I'll try to get my hands on CoQ10 asap too :) Do you think that beginning Pentox without the consent of my urologist is a good idea or should I wait until I see him (don't know if it will take weeks or days) to start that part of the treatment? Since I do not have a bend yet I'm thinking - the sooner I act the better the results?
Location: Sweden
Age: 22

welshwales

Quote from: anthonyagn on January 14, 2015, 04:50:30 AM
@welshwales - I'm gonna try to get Pentox as fast as possible. The dosage is 400mg three times a day - is that correct and will it have side effects to my weightlifting?
Yes that is the recommended dosage, but I don't know much about the side effects as I can't take it myself due to a pre-existing stomach condition.
Quote- Since I have not been contacted by the urologist yet I was thinking about buying it from goldpharma - is that a good idea?
- And also - is there any difference between the more expensive Trental and the "copy" brands?
I don't personally buy anything from online pharmacies, but I believe a lot of forum users buy from a Canadian based outlet called riverpharmacy. There is no difference between generic and named brands.
Quote- Can there be any negative consequences from using a VED during the "acute" phase?
None that I am aware of. But only pump in moderation, until you have a semi, then release. You are only looking to increase blood flow, not stimulate a full erection.
QuoteCialis is insanely expensive from what I can see. What is the normal price and how much is "low-dose" - 2,5mg?
Normal daily low dose is 2.5mg-5mg but can be 10mg if you have severe ED.

Jonbinspain

Trental is a brand name. The generic name of the drug is Pentoxifylline. Just as Tadalafil is the generic name of the drug branded as Cialis.  

anthonyagn

Okay, so I found Pentoxifyllin-product named Rentylin 400 from Amdipharm Limited. Is that what I'm looking for?
Location: Sweden
Age: 22

james1947

anthonyagn

This topic as an introductory topic is ending and will be locked.
Please post/open topic on the subject relevant board.


If you want opinion regarding Amdipharm Limited, please post they link (even is a commercial site) on a new topic on:
Oral Treatments for Peyronie's Disease - PDS - Peyronies Society Forums

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum