27 with Peyronie's for 3-4 months

[DN]

Hello everyone, I'm trying to decide what kind of tone I want to have in this post, should I be upbeat and optimistic, should I be humble and realistic, or should I delete everything and go do something else. I'm young with Peyronie's disease and it's been a rollercoaster 4 months. It's incredible to see how something completely unforeseen can change your life, probably forever. I'm reminded of a quote from the Wear Sunscreen Song:

'The real troubles in your life are apt to be things that never crossed your worried mind, the kind that blind side you at 4 PM on some idle Tuesday.'

I imagine many of us have been blindsided, I certainly was. I was 'diagnosed' with Peyronie's on June 7th by a 'urologist' in Santa Barbara California. His name is Daniel Curhan... to put it plainly, he sucks. He squeezed my penis and told me, 'yeah I think I agree that it's Peyronies, but I can't do anything for you.' He handed me a document he had typed that didn't have a reference more recent than '87 and told me '30% get better, 30% stay the same, and 30% get worse.' I left the office wondering what happened to the other 10%. But before that I asked for Pentox and he obliged but noted it was probably a hopeless drug. My GP prescribed me 5mg daily Cialis about a month earlier when I got the referral to the urologist. I've now been on Pentox for ~2 weeks and Cialis for 2 months. Let's start at the beginning:

I believe my Peyronie's was caused by a girl laying on top of me with her legs closed (squeezing) and resting on mine and leaning on my penis in a way that bent it while having intercourse. It was uncomfortable but bearable and she seemed to enjoy it so I allowed it. The next day I had minor pain that I dismissed. About a month later (April sometime) I began to feel a tiny BB, as many of you have noted. I dismissed the BB too. Eventually after a few weeks I wondered, 'wtf is this tiny BB still doing there.' I jumped on Google and tried to find something other than the recurring Peyronie's search result. It never came. I resigned myself to the self diagnosis and went to see a doctor to do what the internet told me to do: go to GP for referral and Cialis 5mg, go to urologist for Pentox, take a few OTCs. The weekend after I made the self diagnosis, before the appointment, I tried to have sex for the first time with my now girlfriend. I failed. I needed Cialis, apparently I have erectile dysfunction. The doctor gave me Cialis and Viagra and it's been working. I don't really have any other symptoms. So currently my symptoms are:

Erectile dysfunction, venous leakage? (Cialis and Viagra 'fix' this)
A middle plaque, almost directly in the center core of my penis, that has been fairly stable for a couple of months.
A small plaque behind my glans that seems like it's at the end of a vein or something.
A small new plaque is forming in the core of my penis at the base.
A small indent beyond the middle plaque, not noticeable to others.
No ongoing pain, some minor pain and sensitivity after sex/masturbation/ejaculation.

No curvature, yet? I'm trying to expect the curve because I know it's likely but I'm scared to death of it. All I need right now is more problems! I'm going to try to go see Dr. Lue for an ultrasound and ED test of my blood flow. I don't expect he will do much else for me because I'm pretty much already doing his treatment and I don't have >30 degree curvature... yet.

Treatment:

I have been taking 5mg Cialis daily and 10-20 mg sildenafil for sex. I know you're not supposed to mix but I don't get bad side affects.
Pentox 400 mg 3x daily
I have a VED that I used for a bit and will start again.

So like all of us I'm going to wait it out and see how bad my curse is and then try to live with it. I have a girlfriend and we say we love each other (I've known her for years but only started dating 3-4 months ago). Problem is I haven't told her. This thing has been developing along side our relationship. She just moved away for a job and we're in long distance now, I'm probably going to tell her this weekend when she visits. I'll try to convince her to move on without me because I don't want to drag someone else through this with me. The real kicker is that we have great sex! I can tell she loves it and I think she'll be confused to learn that this has all been happening to me while we've been having great sex, thanks PD5E inhibitors! I don't think I can keep it from her any longer, saying I love you is heavy and I can't have such a big secret to keep from her. And what am I supposed to do if I get a curve and she asks? Do I tell her then? I have to tell her ASAP. I love her, I wish I could be with her, but now I hate myself for being her nightmare instead of the dream guy that I felt I was before. Devastating.

Anyways, I'm thinking of seeing a sexual therapist/counselor etc. Is there a good one for Peyronie's in California? I think I should talk to someone. I've told my mom and a guy that is pretty much my dad. I started level headed then broke down. I have a hard time sleeping and usually just lurk these boards and others all night. I still feel like I might wakeup and this all be a dream. Funny how I used to have dreams and ambitions and now all I dream about is my Peyronie's disease disappearing.

I should mention I've been lurking around here for 3-4 months and have gone through many of the top poster's posts. I hope one day I can be on this forum giving everyone great advice and help and that all the new members can be confident in a treatment.... Or maybe I'll be bitter and destroyed and hate this website, the uncertainty is rough.

DN

[Paolo]

Hello everyone, I'm trying to decide what kind of tone I want to have in this post, should I be upbeat and optimistic I've told my mom and a guy that is pretty much my dad.

DN, Your maturity impresses me and I wish you all the best. In my case I just woke up with a bent penis one morning, no warning signs at all, then came the persistent groin pain etc.................

You are obviously a strong person telling your mum and stepdad, I hope they continue to give you unconditional support with this.
If your girlfriend loves you then she won't leave you over this, you are not just a penis, right?

Women don't get that our penises are central to our masculinity and anything that knocks that puts everything we know and understand into the background, it is very tough indeed  

If you mention it to your girlfriend I have said in the past that peyronie's is a syndrome, not a disease. Disease has such 'negative' connotations, the person listening just hears disease and nothing else.

You said "I have a hard time sleeping and usually just lurk these boards and others all night", please don't do that, try and get back into a sensible sleeping routine (easier said than done) and if you do lurk this forum everyday do try and not let despair take hold.

I hope you will keep posting as I think you have a great deal to contribute to this forum, feel free to PM anytime and take care  

[Reascot]

Hi DN,

I'm sorry to hear about your position. Everyone on this board has shared the feelings you have now. What I would recommend is to see a specialist as soon as possible. A doctor you trust is a god send. If you can find one then you'll find your mentality will improve.
There are lots of recommendations on this board worth trying. I've just recently joined and have found it to be of great comfort.
It was a good move telling your mother and father-figure about it. A problem shared is a problem halved.
Try and stay positive. Taking action as early as possible is the best way to deal with Peyronie's.
Don't feel to bad at night either. You're more than just a penis.

Good luck, my friend.  

[Mkmike]

Hi my friend. I was injured last October (girl on top) when I was 27 (28 now) and can empathize with you. We are young guys and this shouldn't have happened to us. Its been a hell of a roller coaster and I'm still on it. If you'd like to talk PM me anytime I'll give you my number if you want to talk on the phone. I've read a lot and done a lot of soul searching these past months if I can help anyone it'd be my pleasure. I am still dealing with the psych component of this (and physical bend 15-20 degree) but am much better mental now than even 3 months ago.  

[DN]

Thanks for all the support guys. I really appreciate it!

This is an ~1 month follow up (total of 4 months with Peyronies):

My Peyronies has progressed, I now have more plaque and hardened chords running from the base to the distal third of my penis. My indents are becoming more pronounced when erect; however, they are probably still difficult to notice. My erectile dysfunction is still ongoing but being mitigated by 5 mg tadalafil daily and 20 mg sildenafil daily. I am just starting traction to try and avoid losing length and obtaining curvature. I have been doing VED on and off. I'm not very good at maintaining these regimens. Still taking Pentox (1.5 months total).

Physical treatment: I have scheduled an appointment with Dr. Tom Lue at UCSF. I hope that he will provide a treatment plan. I am prepared to take that treatment plan through to a penile implant.

Mental treatment: I am scheduling an appointment with a psychologist because I have been experiencing severe symptoms of Situational Depression. I hope that the psychologist can help me. Unfortunately, I don't believe this forum to be generally helpful. Some may find some relief or hope here but mostly it sucks the hope out of those that visit. Nothing will make you feel more depressed than reading hundreds of accounts of this disease.

Advice for others: tadalafil and sildenafil (i.e., cialis and viagra) can be purchased for cheap online from indian pharmacies. I purchased a large amount from alldaychemist. Go see a Peyronie's specialist and stay open minded about surgery. I am still blown away when I read accounts of men going years without sex (hoping for a miracle?). Also, find a therapist ASAP. I told my girlfriend and she was very supportive and no issues. I have been depressed and reclusive for a couple months now and I'm hoping to snap out of it.

Good luck.

[Jonbinspain]

DN;

You're doing pretty much everything right.

It sounds as if you're still in the active phase, and now is the time to hit back to try and mitigate the damage. VED, I found helped a lot with erectile function. And traction should help mitigate any developing curvature.

The mental aspect hits all of us. The main thing is to never, ever give up!  I was so badly curved in the end that I couldn't have sex. Plus I had developed ED. I finally elected for surgery and now, 18 months later, I'm pretty much back to normal.

For you, it's too early to think of surgery. No competent surgeon will operate while your still in he active phase, anyway.

A Doppler ultrasound will also determine the extent of the plaque and if there's any calcification.

[DN]

Update post visit with Peyronie's specialist Dr. Tom Lue UCSF

Current symptoms (~5 months post Peyronie's inducing injury):
Erectile dysfunction (been on tadalafil 5-10 mg daily for 3 months)
Palpable plaque and hard chords running through the center of penis shaft (Pentox for 2 months)
No curve
Mild indent on distal dorsal part of penis (not noticeable to partner)
Mild indent on left side of penis (not noticeable to partner)

Dr. Lue felt my penis very softly and then conducted an ultrasound. The ultrasound showed "mild" scarring in the septum. Dr. Lue concluded that I had a minor injury to the septum of my penis that produced mild scarring. He said that this will get better, my ED will go away and to go off tadalafil in ~3 months and check it. Also, that because the injury is in the septum that I will likely not get curvature or significant deformity. He said this should resolve for me over time but that the underlying scarring is permanent. He said the ED was due to inflammation that will go down. He reiterated multiple times that I should not worry and that I'll be fine!

So, what it seems that he is saying is that I am a member of the "mild Peyronie's" patients that should see a near complete resolution of symptoms.

IS THIS POSSIBLE?! SEEMS WAY TOO OPTIMISTIC! SHOULD I TRUST HIM OR GET A SECOND OPINION? AM I FREAKING OUT MORE THAN I SHOULD?
IS THERE REALLY A LARGE POPULATION OF MILD PEYRONIE'S GUYS THAT ENDED UP NEARLY 100% AFTER???

[Krush]

You saw a specialist, he did tests, and gave you a pretty good explanation for your issues.  I understand your concern as you have been living with this for a while, imagining the worst, but take it as good news or at least some hope.  A second opinion isn't a bad idea but i gotta tell you man i appreciate you posting this as I seem to be having very similar symptoms with the chords, ED, etc...

What I don't understand with his explanation is how inflammation can cause ED months after injury though...
Did he say to stick it out with the Pentox?  

[lessor]

What was his explanation about ED will improve? How could ED improve without pills or injections?

[Christopher1]

Good news.

[DN]

Krush, yes he said continue with the Pentox 400 mg 3x daily. I too am confused by the explanation of the ED and question him a few times, he kept telling me not to worry that I won't get permanent ED. He doesn't have the best bedside manner and doesn't seem to relate all that well.

Lessor, I don't exactly know and his explanation was confusing. Somehow the inflammation is not allowing full erection function. I am going to see Dr. Rafjer at UCLA to do an erection blood flow Duplex Ultrasound and to get a second opinion. Also trying to schedule an appointment with Dr. Martin Gelbard in Burbank, CA, to get another opinion on my Peyronie's. On another note Lessor, I read your introduction, PDE5 inhibitors don't work and you have venous leak and peyronies! . I'm a PhD student in geochemistry and I have done a lot of research and soul searching regarding Peyronies Disease and ED and I gotta say, I am surprised you have not pursued a penile prosthesis/implant. Sometimes I dream that I could just get one right now and put all of this CRAP behind me but my mild symptoms discourage me. With what I have read, your severe symptoms warrant strong consideration of a penile prosthesis. You are from portugal? I'm sure there are respected implanters in Europe. In the US it is Eid, Kramer, Perito, etc. Just go do it! Save money, beg, borrow, steal. Get your penis back! So you'll have an implant, better than not functioning at all! Put this behind you. You've been dealing with venous leak for 6 years and your 23. I used to watch Kramer implant videos on youtube and he'd often show videos of implanting young men. I wish you the best! This is a video of what I would get if I were you, Kramer is world class and he has no fear in putting his work up on the internet to show everyone how good he is: https://www.youtube.com/watch?v=cWaHS7fgFk0&oref=https%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3DcWaHS7fgFk0&has_verified=1