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bballfan70

I am not sure if i am posting correctly, i could not figure out how to post to the introduction area so apologize if this goes to incorrect place.

I visited the urologist yesterday after experiencing last several weeks with pain during erection. I don't have any curvature to speak of but when i become erect, I have alot of pain in the top of the shaft which then causes the erection to go away. There is a sexual incident of note where I think i may have injured myself, but there was no serious pain right after this or bruising, just soreness. Few weeks later I experience extreme pain during erection. At first i thought maybe i did serious damage but after speaking with the urologist and a quick exam, he suggested it could be Peyronies but did not feel it needed further exploration. He told me to start taking Vitamin E and Q10 for the inflammation.

I only get pain during erection, but as i said before it causing ED, because the pain makes the erection subside. When trying to have relations with my wife 2 weeks ago, I could not even get or maintain erection and the pain made it impossible to penetrate.

I guess my main concern is will the pain eventually go away? I have read articles that suggest the pain will eventually subside, does anyone have any idea the timeframe? should i refrain completely from getting an erection until the pain goes away? I had masturbated a few times but I do not get as hard an erection as i used to. While i am able to ejaculate, it is not pleasurable. After speaking to the urologist I was relieved at first that i did not "fracture" or cause major damage but after reading the boards on Peyronies i am starting to really freak out that this could cause ED and my sex life to die.

I am 44 and have NEVER had any type of sexual dysfunction before. Any words of encouragement may help my worry.

Stepone

I am new to this too. I am scheduled for my next new Urologist in February.
The previous 2 urologists didn't really understand Peyronies disease or were too unknowing about the disease they could not really help me.
So I researched the new urologist a little better and feel like this doctor might be able to help me.
What I am trying to say is that the first 2 urologists were about as uncomfortable about penis issues as I was, so what I would share is, either find another urologist to talk to or read as much as you can on here. I have found so much information on here and so many helpful people, I am sure you will feel better after you read more.
BUT first, I an a newbie will say, I doubt your sex life is ruined from now on, it seems that many of the people on here have had good news stories and that also many of the penis problems, LOL, seem to be temporary. Some problems get worse before better, but read, read, read, and read what the old timers share, they seem to have so much experience.
I am so thankful for this site.
Good luck.
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

ryanchan

Hi bballfan70,

welcome to the forum.

This place has allot of information from many peoples experiences. If you run a search on the home page, you'll find answers to your questions.

In terms of pain, I've found pentox (the medication most of us are on) to be very helpful. I'm not sure how it works to relieve the pain but it does a pretty good job.

I don't think anybody here has had success with vitamin e, through there is a debate about its different synthetic forms and their efficacy. CoQ10 has very good reviews here on the forum. Please Note, everybody has different results with these supplements.

I think most people would recommend you get started on pentox ASAP as it is the first line of defense in any situation.

Hope that helped

bballfan70

Thank you for your response... While I have started to read a lot on here, i see a lot of folks think their urologists don't know much about the issue. I am comfortable with my Urologist and he is comfortable with penis issues.. lol, afterall it is his field.. :) Anyway, sometimes I wonder if i read too much on the internet that makes me more anxious than i really have to be but i do appreciate the guidance. My Urologist was the one that suggested Peyronies as a possibility, he examined me (albeit flacid) and said he did feel some hard spots. My injury was definitely related to sex, but i think at the time i was more relieved to find I hadn't "fractured" my penis, but now as i read more about peyronies and the occurence of plaque from injury and how it can progress, its making me more anxious.. He did suggest Vitamin E and NeoQ10 which is some high powered form of CoQ10.. but he didnt seem overly concerned and maybe I was holding on to that to keep from worrying but after reading these forums i feel more worried than before.. I am hoping that the CoQ10 will help with the pain which is the main problem right now... it hurts when i get hard and I can't maintain an erection because of it.  :(

bballfan70

Do you need a prescription for Pentox?

nemo

Yes, you need a prescription for Pentox unless you go through an overseas online Pharmacy. But for Pentox, I'd really encourage you to find a Uro (or GP) who will prescribe, because it's dirt cheap in the US. I think I pay like $4 per refill. Plus, you know you're getting good stuff.  

I completely understand reading this site and getting freaked out. But bear in mind that for most guys, Peyronie's doesn't turn out to be as horrible as we initially imagine it will be. Our worst case scenarios rarely turn out to be true. Sure, sometimes it happens, but it's equally true that you might be diagnosed with terminal cancer tomorrow - so bad things happen, we can't spend our lives worrying about them.  

Relax, take a deep breath and read about the treatments here that seem to be most helpful: Pentox, VED, daily Cialis, CoQ10, traction, etc.  Xiaflex is the new FDA approved injectable treatment, though it's outrageously expensive and comes with some ugly potential side-effects. But it does seem to be working according to reports here.  

My point is there are options. And most of them should be endeavored sooner rather than later, so get educated. Talk to your doctor from a position of knowledge, not depending on him to be a Peyronies Disease expert, because unless you're going to one of the true experts (of which there are few) he won't be. Find a Uro who's up-to-date.  

Best,
Nemo  
51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

bballfan70

Thanks all for the support and the information. I can't even imagine what some others go through that may have it worse. right now for me it all about the pain. i don't have any curvature, but as soon as i get an erection it hurts so you can understand my terror. Based on alot that i have read, the pain should go away.. I sure hope so. One question I have, and this is a serious question... If plaque is caused by trauma and can cause something like this, how did John Bobbit who had his unit cut off, become a porn star? I swear this is a serious question because that is some major trauma and he was fixed... (allegedly).. Just curious if anyone knows the degree of trauma that causes Peronies to start.

nemo

I have to believe it has to do with a genetic predisposition to Peyronie's, which is essentially "excessive" wound healing. If one of us had our penis severed and reattached, it would probably form a solid mass of scar tissue, whereas for a moron like JW Bobbitt, it didn't seem to be a problem.  In a sense, we're drowning in the old gene pool.  

Nemo
51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

sikkidik

Bballfan70, how string is your pain (in a scale from 1 to 10)? Do you feel any lump/plaque? Where is the pain localized, at glans?

bballfan70

The pain is bad enough that as soon as it happens I go limp.. Last time I tried intercourse it would not get completely hard and when I tried penetrating the pushing hurt.. So I stopped.. I then stopped all masturbstion and anything that would cause erection.. After a week of leaving all alone, I felt a bit better.. I definitely feel something that could be plque or something on the top of my shaft right below the head this is also where it hurts.. Leads to my next question.. should I stop all sexual contact? Can masturbating while in the acute stage cause more damage and more plaque? I couldnt stand it any longer so I released some stress today even through the pain and now I'm sore even when flaccid.. :(

james1947

bballfan

You need to see urgently a Peyronies specialist!!!
The best chances to stop the progression of the disease and reverse the symptoms is early treatment, if it is Peyronies.
Pentox may help with the pain, but it is not enough to treat Peyronies, if that what you have.
You may find a Peyronies specialist close to you here:
https://www.peyroniesforum.net/index.php/topic,4063.0.html
and here:
https://www.peyroniesforum.net/index.php/board,37.0.html
I am proposing you to abstain from sex if you can't get fully erect because of the pain, not to cause additional damage.

I am moving your topic to "Coping with the pain caused by Peyronies" otherwise I have to close your topic as an introductory and in my opinion the topic continuity will help you.

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

sikkidik

bballfan,

just curious, when you described your condition to your uro, i.e. that you are having a pain sufficient for you to loose erection, he did not propose any solution, maybe prescription?

bballfan70

My uro gave me examine and said it "might" be as he felt some hard spots in some areas.. He told me to take vitamin e and gave me samples of NeoQ10 which is basically CoQ10.. I ordered some from the company but gave no prescription.. He didn't really emphasize anything.. At the time I was just relieved that I didn't fracture or majorlu damage my penis.. But after hearing peyronies and coming here I now see how serious it is and I'm seriously concerned.. I think I will go for another opinion as I have been struggling with pain and worrying Bout depression..  

james1947

bballfan

As I wrote before, you need to see a Peyronies specialist.
Vitamin E probably will not harm you, but will not help with Peyronies.
CoQ10 may help you as it helped/helps many on the forum.
I didn't find your age in your profile, so I don't know if you should take CoQ10 or Ubiquinol.
We are asking age not because we want to harm your privacy. Some medications/supplements works better for older people, some for younger.

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


bballfan70

Btw.. I've got the pain.. Is there a typical time frame for curvature or deformity to start?

james1947

bballfan

Have no time frame for curvature or deformity. Mine developed during three years, slowly slowly, with no treatment. Others got them overnight.
The key to stop the Peyronies progression and to reverse the symptoms is to treat it early as possible.
You should change from CoQ10 to Ubiquinol, refined CoQ10. The reason is that our body is using Ubiquinol and the ability of our body to transform the CoQ10 to Ubiquinol is degrading after the age of 40.
I was starting also VED, Pentox and low dose Cialis. Pentox helped many with the pain and other issues.

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

bballfan70

Thanks James,
My uro gave me samples of NeoQ10 which is supposed to be more "bioavailable" then reg Coq10 .. I ordered it already.. Does ubiquinol require a RX?
I am thinking of going for a 2nd opinion as looking back my URO did not really concern himself or discuss any of the things I'm now learning here.. Specialists are hours away.. I will see who else I can find.. Closest specialist is private practice which doesn't accept insurance..  

james1947

bballfan

See first the second uro and see what he have to say.
Regarding the NeoQ10, it is a product of a certain company, so of course they will say that this is the best.
Still is CoQ10 that our body have to transform to Ubiquinol.
In addition, on they page, they are stating that 125 mg NeoQ10 = 6*125 mg CoQ10 = 750 mg of CoQ10.
As I know, the daily dosage of CoQ10 supposed to be around 300 - 400 mg per day. So what is the daily dosage you will take?
Maybe I am wrong, but on the WebMD is stated:
QuoteThe FDA has not reviewed this product for safety or effectiveness. Consult your doctor or pharmacist for more details.
You don't need prescription for CoQ10 or Ubiquinol. It is not defined as a drug as you can understand also from WebMD

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

bballfan70

I am keeping the appt for doc #2.. I received my shipment of neoq10.. Will give it a shot and look into ubiquinol as well.. Last few days have been difficult.. I think I'm also having a flare up of prostatitis as I've just had a lot of nagging throbbing around my entire groin area.. Wondering if there is any correlation. I've noticed that my flacid penis has been mildly annoying.. Almost feels like its being choked if that makes any sense.. And cold like it wants to crawl up inside my body.. I had nocturnal erections 2 nights in a row which woke me up as they were uncomfortable.. I think worse is my emotional state.. I keep reading all these posts and can't wrap my mind around this.. I wonder if I will ever be able to have and enjoy sex again.. Its a thought that is driving me down.. What does my future hold.. :(

nemo

bballfan, for most of us, that's where our mind goes when we learn about Peyronies Disease and slip into "worst case scenario" thinking.  However, in truth, the worst case scenario rarely happens.  I completely understand - I'm prone to go there myself. But I can tell you, after my first run-in with Peyronies Disease in 2001, a few years later I was in a relationship, having the best sex I've ever had in my life, so do not assume the worst.  I know it's hard, but fight that temptation.

Best,
Nemo
51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

welshwales

QuoteI had nocturnal erections 2 nights in a row which woke me up as they were uncomfortable
The same thing happened to me when I began taking Cialis, but after a while my penis seemed to adapt to regular erections and I am no longer awoken by them unless I'm lying on my front. Hang in there.

bballfan70

Thanks guys.. Really appreciate the support..  

bballfan70

question.. when plaque forms is it obvious? I can't seem to tell.. Have not really done much "investigation" on my penis before so not sure if I feel something different then before.. In otherwords, I'm not feeling anything that is saying "oh yep, there it is"...  

LWillisjr

My doctor showed me to take my thumb and forefinger on one hand, and place on each side of my penis at the base. You want to squeeze somewhat but don't make it painful. And while doing this squeezing slide your thumb and forefinger together feeling from the base to the tip. Once he showed me this then I could find it on my own.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

bballfan70

So.. I have an appt tomorrow with a diff uro to get second opinion.. I've left my penis alone for last 2 weeks and have not had sex in a while.. I have gotten an erection a few times and the pain seems to have diminished but I still can't maintain an erection.. I think its psychological at this point but we shall see.. I'm just worried about injuring further but want to see where I'm at before next appt.. Still have a "soreness" feeling when flacid and wearing tight boxer briefs that push on it.. Thanks for all your support.. Will keep you posted..  

bballfan70

So uro #2 wasn't much more help. Told me to look at the bright side.. I don't have much to worry about.. No cancer or major problems.. Felt some possible hard areas but I wonder if I didn't mention peyronies in the first place whether it would have even come up.. Its shown as diagnosis on my checkout sheet but again I mentioned it first.. He did debunk the vitamin e and other supplements first Uro suggested but basically told me since there's no curvature now.. There's not much I can do.. Pretty much felt dismissed again.. He did suggest a sexual medicine doc if it continues for another 2 months.. Silver linings are that in the past few days I have been able to get snd maintain an erection with a lot less pain.. Basically from a 10 to a 4 I would say.. So there's that.. I'm hopeful..  

bballfan70

Another thing to note.. I started taking levaquin last week for prostatitis.. My uro was wondering if that might also have some bearing on my pain relief as although its an antibiotic, it also has antiinflammatory properties.. My concern is that its a short 28 day prescription.. If it is indeed helping with my pain. Will the pain come back when I'm done with the course.. So many questions, so few answers...  

james1947

Difficult to answer bballfan70, but I have a friend that have reoccurring prostatitis with strong pain that is going away after the treatment until the next reoccurring.

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

bballfan70

So this morning I had sex for the first time in months.. It was slow and easy and my wife was very understanding to ensure position was ok and that I took it easy.. I was able yo get and maintain an erection, penetrate, and reach orgasm.. A pretty good test run.. ;) tonight I started getting aroused and felt some pain again.. Its like a freaking roller coaster... I'm really thinking that the levaFloxin I'm taking for the prostatitis in the morning helps but then wears off.. Since its only a 28 day course I'm worried pain will come bCk when I finish meds.. Anyone know a safe otc antiinflammatory that can be taken regularly?

bballfan70

Update for anyone that cares to read.. My pain has significantly decreased over last 2 weeks.. I have not had sex again but have masturbated a few times and have gotten erections.. Without pain.. I still sometimes feel an initial discomfort but at like a level 2 when it was at 10.. If I push on the spot where it hurt while flacid, still tender.. but  hopeful.. Been taking coq10 religiously, vitamin e.. And still finishing up levofloxin for the prostatitis which is also gone.. Still not sure if that had any effect on pain so I am concerned when its done pain will come back but I'm remaining cautiously optimistic..  

james1947

"Cautiously optimistic" is a good sentence bballfan70, but what you are experiencing is a very positive thing.
Wish you continue like that. :)

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

bballfan70

So things continue to go well.. Last night was valentines and the wife surprised me with some "toys".. Do any of you have experience with using cock rings and are they dangerous to use with this condition?
We were able to have intercourse with no pain.. And I feel good today.. I still see some indentation on side but the pain seems to have abated... I continue to take Coq10 and vitmin e.. I'm almost done with my course of levofloxin for prostatitis.. Just wanted to share some good news for some folks who come here completely distraught as I did a few weeks ago and thank everyone for the support you have provided.. I remain cautiously optimistic :) we shall see..  

bballfan70

So mild pain seems to be returning.. its not where as severe as before and i am getting nocturnal erections without pain  however, today there was some discomfort during erection and then a naggin ache while flaccid.. curious if things are acting back up after they died down. How long does it typically take for plaques to form and do they continue?