28 year old losing my mind

[YoungPatient]

Hi, I am 28 years old and for the past month I have been losing my mind. I need some help.
About a month ago I noticed a hard little lump inside my penis, no pain, no deformity, however asked for an appointment with the urologist to be sure it wasn't a tumor (I know how stupid this sounds now). I had to wait about a week for the appointment, however 2 days before the visit, after masturbating I felt huge pain under my glans on left side: I noticed a new big hard lump that wasn't there before. I didn't sleep for 2 nights thinking the worse.
Urologist said it wasn't cancer so I got an order for an ecocolordoppler and relaxed, thinking the lumps may be usual body stuff that gets away with time.
I went to the ecocolordoppler and urologist confirmed Peyronies disease. By this time I had little idea on the disease but he said  basically: "No cure, 1 more year of progressive defformity and unknown outcome... also almost irreversible, so you will have to live with whatever is left of your deformed penis" I am 28 years old without a girlfriend, immagine how that sounded.
I was shocked, almost got hit by a car on my way out of the hospital because I almost could't breath, everything was full with white noise around me, anything made sense. also I remember having tachicardia for the first 3 days (usually my bmp is around 55 when I wake up, those days was from 80 to 90 all day long)
I researched all night long literally and I found out that as a matter fact such a nightmare of a disease  does exist. As if it wasn't enough I had a lot of pain, enough to keep me awake almost cryiing the first 3 nights (no matter how much ibuprofene I took). Also a depression "ring" developed on the shaft that same week (now i know it's called hourglassing)
SO now I have the 2 plaques (ecocolordoppler confirms they are calcified), left curvature (about 25 degrees, so not too bad), lost some girth, length and sexual desire and a horrible depression in form of a ring in the middle of the shaft and on the place where the left plaque is near the glands (The penis flattens out).
I am in another continent, away from all my friends and family, living as a student doing a very demanding masters degree. So on I was already pretty stressed out, and now with this I collapsed. Also I have to watch out where I spend every cent, and between the exams and the traction device (Ibought a "cheap one" at 90 euro) most of mo money is gone now.

Fortunately a friend of mine is a urologist in my home conuntry and recomended pentox 3 times a day. Here my local urologist recommended Peironev plus (I take it but I'm not sure if it's a scam because it has much less vitamin E than what I see online people usually take). I also had to buy some medicine to get me to sleep because I had been a week awake because of the anxiety and was at the border of a collapse.

Now I have been able to go back to lessons at university, and I am quite lost because of my previous absence but I am beginning to get my crap together at least academically.

Also my friend put me on touch with one of the best urologist in Italy and he is making possible for me to start some iontophoresis treatment for free since as a student I can't afford anything right now (I hope life returns the favor big time to this man).
I bought a traction device and am willing to use it as much as possible to stop deformity, which in my particular case appears to be progressing at a very fast rate (many patient develop deformity in 1 year while I developed hourglassing, and 2 plaques in less than a month).

I'd like to ask the kind members of this group if hour glassing tends to dissapear, and also your opinions on traction for this particular condition.

I will also try to remember to write back once I am done with iontophoresis to share my experience with this comunity.

Last but not least, I think everyday about suicide. I have been depressed for the past months because several events in my life and this was just like a kick in the face while i was struggling to get some air. I worry the most on how to meet a future girlfriend and how to tell her of my condition before sexual intercourse to make it happen with the necessary "protocol".

I know my writing may be confusing, but my head is not working properly. Any advice will be of help, specially on how to get best result of traction at this early stage or what not to do (for example I don't want to over  do it and make things worse). Has anyone else taken this Peironimev plus thing? any result?

[TonySa]

Welcome, and I'm sorry to hear about your condition.  However, you've come to the right place for support and you have caught it early.  Can you fill the prescription for pentox that your urologist friend recommended?  They may call it trental in Europe if I remember virrrvyly.  Does your university offer any health plan that may cover this.  Def add traction, the ESL-49 is about $35 bucks and can be worn under clothes for several hours a day.  If you could add 5mg of vuagra or 20mg if cialis (generic ok) each day that would also help.  Most importantly whatever you can go—do every day for 3-6 months before you will see improvement and add other treatment options as you can.  Please keep us posted and hang in there.  If you're getting duicidal def week out support and treatment for that as this is a lot fir a young man to cope with (ie vounseling and/or medication).

[YoungPatient]

Thank you TonySa.
Fortunately I could get the Pentox and have been taking it everyday. I forgot to mention I also take 1 mg colchicine as per suggestion of my urologist friend.
For traction i got the andromedical device that is in the low end price range. Some people complain  is unconmfortable to wear but at this point I am willing to bear some discomfort for a greater good, also the other options are outrageous for my current budget (they cost around 300 euro).
My plan is to stick with the pentox + colchicine + Peironimev for oral medications + try to get some 4-6 hours a day of traction with the endromedical device + try to get at least a couple erections during the day to be sure some fresh blood flows into the penis. Masturbation strangely lost all sense and no further gives me any pleasure, don't know if it's because of some physiological or psychiatric issue, but is not my biggest concern, as long as I get some visual stimulation I can still get erections which I consider a good sign.
I hope I will be able to try the iontophoresis, and hopefully it has some good results. Some of the worst thing of this disease is that many things just "may" work.
Finally, in December i'm going to my homecountry and I'll try to get in touch with some psychiatrist to prescribe me some medicine to help me with my mood since as I already said for the past months I've been in a very bad emotional state, constatntly thinking about suicide and dyiing (weirdly not actually thinking on performing the action of killing myself,, but there is constantly the thought of how nice it would be to die... is f'~c<+d up I know, but I noticed, kept track and realized that almost every single day I think of dying as something good... even before the disease, so something must be wrong with my head).
From now on my lifestyle changed of course since I don't want to meet new people or go to any plan with my friends, I even lost completely my apetite and only eat in order to take the medicines and avoid getting an additional problem (gastritis).

I'll keep you posted on how the iontophoresis goes (If I actually get to do it) and on the traction progress.

[JS1991]

Luckily you've caught things early, so you can now 1) Contain progression. And 2) Eventually work to restore lost dimensions.

You're on the right path when it comes to Pentox and traction. Consider changing to a keto diet with intermittent fasting. Add in CoQ10, L-Citrulline, Acetyl L-Carnitine and Cialis to your oral regimen. I believe you should also stop masturbating or cut down greatly if possible, although some (including TonySa) disagree with me. VED therapy as well as traction have been known to remove the hourglassing effect as well as denting. Traction begun this early should help prevent loss of length.

Read my story for more info on myself, and checkout NeoV's YouTube channel: https://www.youtube.com/channel/UCjX1naIryWc6pennKOHWbgg/videos for more info on treatments. Checkout our official Peyronie's survival guide as well. Just remember to BE CAREFUL with traction and VED therapy. People get upset and overzealous with treatments and end up causing further injury. Your main concern at the moment should be not injuring yourself any further. You'll be fine, just brace to fight this and stay positive!

[Hawk]

Also be aware that unfortunately, most medications that combat depression also contribute a loss of libido and ED while you are taking them.  

If you can get a prescription for 50 mg Trazadone and take a 1/2 of a pill at night with a small snack, it will not only help you sleep, it will likely give you nighttime erections as a side-effect.  it is VERY cheap.  Most doctors will give it to you for sleep issues.  Tell them you only want to take half of a pill.

[diehardpatriot]

Hey.  I am 18 dealing with a major penis issue too. I remember the first month or two, it was terrible. I didn't sleep much either. I'd sleep At 1am and wake up at 4 wide awake and worried. In a constant state of mental pain. But please, do not hurt yourself. My dad told me "suicide is a permanent solution to a TEMPORARY problem". That's how I deal with this crap condition. The biggest thing right now Is you're doing all you can. Make sure you are managing the pain too, that is key to not letting it depress you. Remember and have hope that this is all TEMPORARY. One day, you will have no pain and your sex life will resume. Continue to do all you can and focus on your life for the time being

[YoungPatient]

So today I went to get a doppler for varicocele because the first urologist I visited here in Italy said pain in the groin area was maybe because a reappearing varicocele ( I got operated on feb 2017) and not peyronies, so he prescribed both exams for peyronie and varicocele.
So I went there, and nothing important was found with the varicocele, so I told the urologist that made the test that actually the motive of my visit was pain in the groin area and that I had been recently been diagnosed with Peyornies. Here everything turned up side down, since he contradicted what the other urologist had said before.

He said that:
-Pain in groin area is actually also Peyronies Disease (opposed to 2 previous urologist who said Peyronie is only on shaft and that this pain had to be another thing)
-Drop off Pentox deffinitely, that it doesn't help and has bad side effects (as opposed to my urologist in my homecountry and most evidence in this forum. Also the urologist that made the first ecocolordoppler adviced against pentox but I didn't listen to him, he suggested to use some Arnica cream)
-Drop off Colchicine (also supposedly doesn't work) (as opposed to the urologist in my homecountry)
-Don't waste my time and money (actually I'm getting free hoepfully) on Iontophoresis: supposedly doesn't do anything to fix the problem (as opposed to what one of the mostrenowed urologist in italy suggested???)
-Stop traction immediately becasue I will just be prolonging the acute phase (As opposed to my urologist in Colombia and many on this forum)
-recommended cialis (1.5 tablets every mon, wed, fri)

basically said to take : cialis +peironimev plus and wait for three months and drop everything else (specially traction and pentox). He also said hourglassing won't improve and that I'll have to have gentle sex for the rest of my life to avoid fracture

at this point I am losing my mind. I mean one day I have some hope, and the next one I am told that I have been doing more harm than good.

What is this roller coaster? are medics even reading scientific evidence or are they just betting on their best feeling?? do they know how important this decisions are for a human male?

not only the disease is a nightmare, but being in a foerign country spending the few money I have left is killing me. everyday I go out, miss lessons at my masters degree (now im pretty lost in everything which doesn't help with the stress) in order to get to do some appointments and tests that I pay in euros (my savings are in a much weaker currency), just to hear bad and confusing news. then I return home feeling lost in time like I have been doing eberything wrong from day 0, just wanting to drop everything off  and go die somewhere under some tree.

For what is worth, I would just like to know what are your opinions on traction in acute phase, by now I have the device at home,and am willing to use it as far as it doesn't do more harm than good. I would really appreciate some income from those of you who had good/bad experiences. By now doctors opinions are worth to me as much as a facebook post on what type of toaster I am. I am sorry with any doctors that read this because I know how much time and energy you put in your profession, but regarding this disease 5 different specialists have completely 5 opposite opinions and criticize each other so please understand my frustration.

I hope some of you are having better luck with your urologists/methods and getting a way around it.

last but not least tomorrow I will be examined by the (yes another) urologist that is willing to perform some iontophoresis for free giving my student condition. something tells me all will be again me mixed by tomorrow at this hour.

[Asian Eagle]

Hello Brother! Well I wish I could fix your problem somehow. I'm not a old member here, I got injured three weeks ago, but in these three weeks, I spent my 90% time reading/researching about peyronie's, so I think I have a decent knowledge of this disease now.

Moreover I can relate to your psychological situation because im also young, I'm 23 year, obviously younger than you. So I understand your feelings.

So back on point : You have peyronie's (your ultrasound confirmed it), and now you want cure for it.
I don't want to demotivate, but let's face the truth, your doc is right "There's no proved cure for it."
There are thousands members on this forum, and they have tried thousands methods to cure it, but nothing gave satisfaction.
Only few members have seen some improvements after a long time with multiple methods, so they are not even sure that which method worked for them.

This disease or curse is so diverse when it comes to symptoms, progression and treatments. You can't find a single person on this forum with exact same symptoms, progression or treatment.

So what are the options for you?
Well you have plaques so first you need to reduce them, and as far I ve researched on this topic, Pentox, colchicine and CoQ10 are most effective common medicine among all patients who experienced plaque reduction. So you have to continue with these medicines. For more info look into peyronie's survival guide for new members in this forum.

Now about manual and physical intervention there are two theories :
1. Some urologists believe that you should give enough rest to it, so it will heal it itself, or will not get worse atleast. If you try to pull it, the wound won't heal and it will continue to progress, making curvature and pain more severe. That's why 90% urologists recommend "wait and watch" method for one year.

2. However some people believe that if you intervene earlier, you can actually stop it from worsening.

Both of these theories have almost no proof. There are people who couldn't prevent it from getting worse, even with earliest intervention with heavy dosage of medicines and hours of traction. On the other side there are also those people who did nothing and got a stable stage without any intervention. So sometimes I wonder if these medicines are working really or that is just a coincidence.

So brother it's your own choice, you can give a try for VED, and manual traction with hand, but be gentle and not cross limits, there are people who have injured themselves. If you read that some guy is doing traction for 6 hours, that doesn't mean you need to do it for 7 hours! It's not a competition, your penis is most sensitive part, and you are not a robot, start with minutes and go up to 1-2 hours at max, take breaks in between.

Now let's talk about your psychological situation. Ok just accept you have Peyronie's, and theres nothing much you can do about it. So just don't think about it, don't worry about it, lose yourself.

In the some cases, it does heal itself, or it gets stabilized, so there's still a hope. You will still be able to have intercourse like most of other members on this forum.

In the worst case, if you face difficulty having sex, there are surgical options, with a satisfactory success rate. So accept the fact, that nothing is gonna stop you from having intercourse. So stop worrying now, because you don't know the future yet! Do you?!

Don't read too much about peyronies, you'll get tired and depressed eventually. Watch some movies in free time, focus and take interest in your work and studies, try to distract yourself from this crap, or you'll develop what they call ED.

In the first few days, I was also too much depressed. But then I came to conclusion that worrying won't change anything, I will face whatever will come, in future. Life is too short anyways, why waste it. Never worry for the matters, you can't even control.

Is sex your only hobby? If not, then invest your time in other hobbies, don't waste it into depression. And when the bad time is over, invest that time in sex. Job done!

Sorry, I know It took too long to read, but it took even longer to type, but still I typed because we have similar story, and I care for you!

Good luck!

[TonySa]

Lots of good advice.  
I'd like to add that we often have to develop our own treatment strategy.  For example, you can refill the script from the doc that ordered the pentox, and also add the cialis the other doc prescribed.  Studies do show improvement with traction and one shows even more improvement when adding pentox.  I'd def do traction with at least these two meds.  If the ionopherersis is free it probably wouldn't hurt.  I thought it was a delivery system for a medication-so I'm not sure.
I like hawks advice for low dose trazadone to help w sleep (and maybe nocturnal erections) as this is one of the few meds for sleep that are not addictive.  (At higher doses an anti-depressant)
As far as the anti-depressants go, Wellbutrin is one that men have good outcomes with that rarely causes sexual dysfunction like the SSRI's.
Hang in there and keep us posted!

[Hawk]

We are getting almost to our 10 post limit for an introduction topic so you will have to post under specific boards after 1 or 2 more posts.

iontophoresis was a delivery system used for a drug that totally slips my mind at the moment.  It was expensive and suspected of being a rip-off.  One study at the time, however, found the iontophoresis showed the same level of improvement with or without the drug which was interesting.  I would definitely do it if it is free.

I would also do the Pentox.  I am not very optimistic about Colchicine.  All it did for me is mess up my white blood cell count.  If you read potential side-effects of it you will scream.  It seems more like chemo than a drug for Peyronies Disease.  There are not many positive studies for it either.

I am not sure what I would do about traction but I am pretty sure I would use minimum traction.  If you are in the acute phase then scar tissue, (plaque) is forming.  I would not want to be contracted and flaccid during that process but stretched.  I would go for maximum hours with minimal tension based on nothing but the best logic I can muster.

Best Wished

[YoungPatient]

Hi all, first thanks for your advice, I am carefully reviewingevery bit of info.

As Hawk mentioned I will conclude here with this last reply and then post a follow up in the corresponding section.
As far as the Iontophoresis went today it is a completely painless procedure, that took about half an hour in total so also relatively quick (to have verapamil injections I was supposed to stay monitored a whole afternoon or so because my BPM are low due to sportive life -I didn't quite get that).

SO in summary I will continue with:
3 times a day pentox
2mg colchicine since is doing me no harm
Peironimev plus since 3 different urologists here in Italy have availed it (I can only hope is not just a marketing here in this country)
Traction, going gently (4h a day with a rest at least every hour to be conservative)
3 weeks of iontophoresis 2 sessions per week.
EN drops to help me get some sleep since anxiety keeps at a peak.

I will keep you posted in a few weeks.

Thanks all for the support and I hope any info I get may serve others.

[Hawk]

Great plan YP!  I hope all goes well.  I be looking forward to an update.

Hawk