Introduction

[marks]

Hi, everyone, I am new on here. Too be very honest I have not officially been "diagnosed", with this disease, but I did recently find out about it. for starters I thought I was the only one, so I'm a little bit relieved to hear that I'm not alone. spent a good portion of time being ashamed & all that stuff. I recently have come to the conclusion that I will probably have to talk to a Dr, which I will admit I will have a very hard time doing, since on the account I'm not quite that old.

[james1947]

Marks

Can you tell us about your symptoms, how you get to conclusion that you have Peyronies?
And yes, you will need to see a doctor, preferable a real Peyronies specialist if you don't want to be disappointed from the appointment.

Welcome to the forum
James

[restore]

Welcome marks.  I have noticed many of our new members are younger men.  Could this be a trend?  If so, I'm not sure what's causing it.  Although I think the average age at onset is still mid-life 40s/50s.  

[Hawk]

There certainly is no basis for thinking there is a changing age trend for onset of Peyronies Disease.  We have always had young men on the forums and when you consider young men are far more likely to turn to the internet there is nothing unusual about that.  Certainly when you get a few more young men on a forum of 4500 out of a world populations of over 7 billion you cannot use that to extrapolate trends.

[restore]

Agree, just seems like the introductions have been from younger guys lately.  I do think the prevalence of jelging and other risky behaviours contibutes to injuries in younger men (not saying that's the case for Mark).

[restore]

when you consider young men are far more likely to turn to the internet there is nothing unusual about that.

good point, hadn't thought of that when I first posted.

[marks]

At this point all I feel comfortable saying is that its noticeable not "normal" looking & at times there can be some very minor pain @ james 1947. @ hawk & restore from what I understand, it's still unknown what the exact causes are, all I know is that for me personally its extremely hard to talk about it to someone or anyone & I at times do feel ashamed or  like I'm a less of a person too because of it.Guess my next doctors appointment, I'll have to muster up the courage to mention it though.

[Hawk]

Marks,

Obviously we are here to help and it is your call to use us in the way that best helps you.  Accordingly if you feel uncomfortable talking about this we have no interest in pressing you to talk.  It seems to me however that if you cannot talk about it here anonymously, that it is is likely to be even more difficult to have a detailed conversation with your doctor.  Doctor appointments for Peyronies Disease are notoriously unproductive as it is because most doctors are totally uneducated abut the facts.  That mean you have to go VERY prepared and I think the best way to do that is engage in dialog here.

An alternative however is to just read starting with this MUST READ BEFORE YOU POST - Information for new members - Peyronies Society Forums and look up all the links in that article.

Best of luck and if you have any questions after reading, just ask.

Hawk

[marks]

Thank you hawk I read it & will continue to conduct my own research on finding someone suitable to talk to. I faced some challenges in my years, but to be honest, me being a younger individual i find it quite difficult & sensitive issue. So with that in mind other than the link you provided me with (which by the way thank you for). If its OK of my asking how did you (or anybody else who be willing to share) go about talking about this issue with your Dr, as i'd imagine it to be a very hard thing to talk about? Also if its OK with my asking, what was your age (ball park estimation would be enough or you don't have to share, since I don't want to pry) when you decided to talk to your Dr, I'm figuring age could affect the outcome as much too?

[Hawk]

Marks,

I was in my early 50's when I was confronted with Peyronies Disease but decades before that I had rectal probes etc.   When I first started ED injectionos after prostate surgery I was in a doctor's office in New York City, a place not know for its manners or formality. When I did my first self injection (into the penis) a good looking nurse was talking me through the procedure step by step as I stood there basically naked.  My wife was also in the room.  The nurse came back in 15 minute and said "OK open up your rob and lets see what you got".  I was somewhat amused by it so it is nothing but a mind set.

You did nothing to be ashamed of.  Shame is associated with guilt, dishonor, or wrong foolish behavior.  It is an entirely inappropriate emotion in this situation.  Can you imagine what every sensitive young girl goes through when the have to lay down with their legs in stirrups and let a doctor (usually a male) look up their vagina?  They take it as they should as an appropriate medical exam.  Ten minutes later a doctor is looking at a film of someone facing ovarian cancer and it is all routine day in and day out.  It is about as memorable to them as it is to a cashier when someone buys a pack of underwear.  

[marks]

OK thanks @ hawk. I will keep this in mind, but I think Ill have to take this step by step though. Now based of the reading you provided me with it said there are a couple options, I can either try to find/speak with a uriologist or a speacialist or get a referal for one from my family Dr. But accroding to the article it made it seem like most Drs don't fully understand this issue and it were to make me feel like that trying to get a referal could end up being a dead end. would you suggest that I try talking to a uriologist/speacialist on my own without a referral?

[Hawk]

This is an incomplete list under construction.  You can go to this link and scroll down to find an area nearest you or you can send me a PM and tell me what large city you live near and I can try to locate someone near you that has not been included on the list yet. https://www.peyroniesforum.net/index.php/topic,3053.0.html

On the subject of embarrassment with your doctor, keep in mind that learning to a be matter-of-fact, with medical personnel is not only a sign of maturity,  but it is essential to good health.  If you do not learn this you will pay a dear price in loss of physical health and there is a whole host of things that have far worse consequences even than Peyronies Disease.

[LWillisjr]

Just to confirm what others have posted. As far as the ability to discuss this with a doctor. I don't think age has much to do with it. I was in my early 50's when I got this and it was awkward for me at first. Just wasn't something I was used to discussing or showing. But after a few doctor visits, they treat you professionally and I soon got over the embarrassment of discussing my situation.

[marks]

Well I was able to schedule an appointment with my doctor & Ill need a referral for a uriologist for a proper diagnosis. All I can say is wish me luck as I will be extremely nervous.

[Hawk]

Good,

We wish you luck but remember that some of it does not depend on luck.  It depends on your preparation.  Be sure you read the article linked below and follow the section on preparing for your doctors visit.

[MattFoley]

marks, keep Hawk's advice to you in mind because you MUST be prepared when talking to your doctor.

Research, research, research!!

When I saw my first Peyronie's urologist, I was so prepared that he asked me if I worked in the medical field since I was hitting him with so much medical jargon about my condition. I knew more about possible treatments than he did (he was clueless about Xiaflex!!) and because of that I was able to get him to prescribe the kinds of treatments that you will find discussed in these forums. If I wasn't so prepared, I would have probably left there empty handed and feeling hopeless.

Prepare yourself for that appointment. Find out who the best Peyronie's urologist is in an area to which you would be willing to travel and ask for a referral to that doctor.

Good luck & God bless.

[marks]

OK so knowledge is my best bet to get the best treatment. I would like to ask for those who have experience when you went to the doctor & asked for a refferal, did they try to dismiss your condition as if to say it was just in your head, well assuming it wasn't that severe anyway? Also I have some general knowledge of treatment options thanks to this site, but where ca i get more specific knowledge, like enough to talk in the medical fields' language, so I won't be just another "voice"?

[MattFoley]

None of my doctors dismissed my condition. To them, it was easily identifiable. The bent penis is a dead give-away.

In terms of generating questions for the doctor, you've come to the right place. Do your research here in these forums and you'll be quite prepared for talking to your doctor(s).


P.S. I know others may have a different experience but I find that male doctors tend to have more sympathy for Peyronie's since they too have penises and the idea of it being bent is a horror beyond imagination. Also, ever notice somebody getting kicked in the balls in a movie or on TV? Who groans when they watch that? Men or women? Yeah, exactly.

[LWillisjr]

I've said this before..... Don't assume you  need a referral. I called Dr. Levine's office directly and made my first appointment directly. I did check ahead of time to make sure he was listed in my insurance program.

[marks]

OK I'm currently seeing a professional, but they're not an MD persae'.As a starting treatment, he's asking me to massage my penis with massage oil & olive oil along with a diet of vitamin E rich foods. He is also going to give me further treatment instructions within the next couple weeks. I wanted to hear feedback from others?

[Skjaldborg]

Marks,

Please go see a trained urologist, particularly one who specializes in male sexual health. Non-MDs will not be able to provide effective treatment.

Best,

Skjaldborg

[james1947]

Marks

I am proposing you to listen to Skjaldborg advice and read:
UNUSUAL Treatments and Experiments - Peyronies Society Forums
You will find there my experiment result with olive oil
Good joke

James