Just diagnosed with Peyronies Disease, I am scared...

[Madigan]

2 months ago when I was urinating I noticed a lump on the shaft of my penis at mid point, my mind immediately thought this was going to be something really bad....maybe even cancer. I lost sleep for the first week, scared of what I should do. I was too embarrassed to make an appointment with my doctor as I have always been shy about having my genitals examined during physicals. I ended up sharing what I had found with a good friend whom really pushed me to go see a doctor immediately. A few days later I came down with the flu (105 degree fever) and ended up at the urgent care center. While I was there I got up the courage to tell the doctor about the lump I had found on my penis, he took a look at it and then sent me to have an Ultrasound right then. After the Ultrasound the doctor referred me to a Urologist and urged me to set up an appointment right away. The appointment was set for 3 weeks out, that freaked me out even further as time was passing and I was afraid that whatever it was would get worse. Well, it did get worse, the lump began to widen and flatten out, even seemed to start wrapping around the right side of the shaft of my penis. Every day my anxiety grew (I already take medication for anxiety and depression). On December 6, 2010 I finally met with the Urologist. He examined my penis for a whole 30 seconds and told me I had Peyronies Disease. I had so many questions, but he did not seem concerned and just told me to watch what happens and check back with him in 6 months. My questions to him were vaguely answered and he briefly told me about what could be done to fix my penis should it get worse....surgery. I left his office feeling even more confused and anxious. Since my appointment I have noticed the lump still growing but it had no affect on my erections. Last night I felt like masturbating and when my penis became erect I was in complete shock, my penis was bending severely towards my stomach and scared me to death. The moment I saw my erect bent penis I went completely limp out of fright. This curve had not happened prior to last night, this is a nightmare to me and I am so incredibly scared. I feel like my manhood is being taken from me, how will I be able to cope with this, how will a potential intimate partner see me? I immediately went on-line and did a complete search on the disease. Some of the images and information I came across horrified me. I then came across this site and spent hours reading all I could about the disease and how to contend with it. I stayed home from work today so that I could read everything I could possibly find to help me, the more I read though, the more emotional I become, today I am severely depressed. I am so afraid of getting another erection and seeing it again........I have always found it hard to reach out for help, but I desperately need it now.  

[crashbandit]

That's a very sad situation no doubt. Whatever you do, don't wait the 6 months that the Urologist suggested. There are good treatments for Peyronies disease, expecially in the acute phase, which can last up to 18 months. So there is definite light at the end of the tunnel.

Also don't worry about being shy about Peyronies with any doctor. It's their job to help you and will never judge you or look down on you ever, likewise with people on this forum. This is an extremely difficult thing for you to go through, but you will make it through no matter what. And in the end I really hope it make you a stronger person that has conquored this nasty disease and a great sex life.

Get on pentoxifiylline (AKA Trental) an oral medication ASAP. Look into VED (Vacuum erection device) therapy and traction (a stretching method) to combat Peyronies from the outside. These 2 things should be started immediatly. The Pentox does need a perscription, which can be difficult sometimes, so hopefully your doctor or Urologist is compliant.

I'm pulling for you, you can beat this.

[Madigan]

That's a very sad situation no doubt. Whatever you do, don't wait the 6 months that the Urologist suggested. There are good treatments for Peyronies disease, expecially in the acute phase, which can last up to 18 months. So there is definite light at the end of the tunnel.

Crashbandit,

Thank you so much for your words of encouragement and for suggesting that I get started on treatment right away. I am hopeful hearing you say that with me being in the acute phase I may have more options to combat this. I'll make a phone call to my Urologist right away and push for a prescription of Pentox. I think I can order a VED on-line, do your suggest any specific one? I will give it a shot!!

You have given me hope.

With Much Thanks!!

[George999]

Madigan,  If your urologist gives you the run around on Pentox, which likely he will, you will need to ask him for a "second opinion" from a Peyronie's specialist.  What would be helpful for you at this point is if you could post on the Urologists and other doctors topic and let us know the general geographic area where you live, someone here can hopefully point you to a specific specialist in your area that is knowledgeable about Pentox and who is comfortable in prescribing it.  That way you will know ahead of time that you will get Pentox.  And you can tell your current uro "I need a referral to Dr. X who is a Peyronie's specialist so that I can get a second opinion from him."

ALSO, CoQ10 has been shown effective by credible research as well and Ubiquinol is the preferred form.  Multiple guys here on this site have seen benefit from Ubiquinol.  I DOES NOT require a prescription and will only add to the benefit you will get from Pentox and VED.  I am currently using both Pentox and Ubiquinol and that is helping me significantly more than Pentox alone was.  I highly recommend it.  Dosage for Ubiquinol is 100mg 3X per day.

You should read everything you can on both Ubiquinol and Pentox in the Oral Treatments and Alternative Treatments topics.  And also make sure you read this:  http://www.nature.com/ijir/journal/v22/n5/full/ijir201020a.html

- George

[LWillisjr]

Unfortunately many urologists think they are specialists and will hesitate at referring you. You may have to simply do some searching on your own.

[George999]

Les, ANY doctor that REFUSES to refer for a second opinion should be an EX-doctor period.  Refusal to grant a second opinion is a HUGE red flag whether it be from a primary care physician OR a specialist.  I OFTEN ask for second opinions and ONLY ONCE have I run up against a physician who refused my request.  That was with my wife's cardiologist.  When I persisted, he began banging his hands on his medical school degree hanging on the wall and I couldn't get my wife out of his office fast enough.  If you value your life, never, ever, continue seeing a doctor who has this problem.  In the case of my urologist who refused me Pentox, he cheerfully referred me to Dr Lue who refused to see me without a referral.  And because of my case he is now prescribing Pentox.  So my advice to Madigan is that he politely, but insistently request a referral.  IF the doctor refuses to grant his request, he knows what to do next.  - George

[LWillisjr]

I agree with you George. Was just pointing out that some urologists think they are experts and may hesitate at referrals.

[Brightdog]

Madigan -

Breathe.
Many of us have been through what you are going through, and we're still alive and finding ways of coping. Some of us have horror stories, but there are encouraging treatments and this is a very supportive site.

I also thought at first "What if this is cancer?", and I had a doctor who was just as vague as yours. Unfortunately this was more than 10 years ago and I did not have this site - and he sent me away saying "Nothing serious - take some Vitamin E and see if it clears up."
My story - which you can find in the Our Stories thread - is one of serious medical bungling over a fairly long period.

And yet, here I am. I can have sex again, my penis doesn't cause anyone to run out int he street in a blind panic, and I am feeling pretty decent about the future. 6 months ago I was desperate and angry.

But unlike other diseases where the medical community is proactive, this is one where you have to be bold and convince people that you really do need treatment. I waited too long, because I was told to. My handy tip: photographs. Whenever I ran up against a refusal to see me or to refer me, I dropped off a photo of my deformed erection. Worked every time. I hated it, because I didn't want to have photos of my penis lying around, but it was the only way I could think of to get their attention.

Another hint: many doctors won't take it seriously unless you have Erectile Dysfunction. Don't be shy about telling them you are having psych problems adjusting to your misshapen penis and it is affecting your ability to have an erection even if your are physically capable. I had no ED problems - but when my surgeon saw what my penis looked like when erect, he said "You can't live like that!" Everyone else had said "If you are having erections, there is no need for intervention."

In the meantime, trust. Trust that people who want to be physically intimate with you will understand. Trust that you can do something about the progress of the disease. Do your best to take a longterm view and a devil-may-care attitude. Once I was scheduled for surgery, I told everyone I was having a penile reduction. It was a great conversation starter - and I educated a lot of people about the disease. I coped with my own embarrassment by refusing to let the disease be a secret. I mean, if there was scar tissue in my hand (Dupuytrens, related to Peyronie's) would I hide the fact that I was seeking treatment? No! So if people think it's somehow dirty to talk about scar tissue in my penis, that's THEIR problem. I treated it like any other medical condition for which you might have surgery. "I am having an appendectomy." "My gall bladder has to come out." "I am getting my eyes done." "I am having penile reduction because I have too much scar tissue."

[BrooksBro]

I find no joy in welcoming you to this forum, where all of us were, at one time, right where you are now.  As someone pointed out already, this is not nearly as serious as many other medical conditions, including cancer and cardiovascular disease.

As I like to say, half of all physicians finished in the bottom half of their class in medical school, and no matter what their education or experience, they are still only "practicing" medicine.  

I think the single most important thing you can do is to find a male sexual specialist physician, and not just a urologist.  Pentoxyfilline (400 mg 3X daily) remains the current oral drug of choice.  Oral vitamin E is a waste of time, along with "just wait and see."

Let us know where in the country you live, and perhaps someone else here can recommend a physician near you.  In the U.S., there are a very few who are recognized as the best available.  You may look at the list of those who are participating in a new drug study as possibly being someone with above average experience in treating peyronies.

http://www.clinicaltrials.gov/ct2/show/study/NCT01221597?term=peyronie%27s&rank=1&show_locs=Y#locn

[tooyung4this]

Hi all, I too was just diagnosed with "mild" peyronies disease, though I first noticed symptoms 3-4months ago.
It started as pain along the left shaft and one day I woke up and the member was leaning to the left. I seen 3 urologists, one told me when i described the fact my penis one day was "bent" he said "you have peyronies disease, dont look at it!". So, I didnt for awhile until I did research on the internet and learned there might be something I can do besides "not look at it", I went to another uro who "examined" me, told me he cant find any plaque and im "obsessing over my penis", so once again I left it alone, just took vit E since I figured it cant hurt. Afetr about 2-3 months the Peyronies seemed to get worse, I noticed a "dent" along the bottom of the left side of shaft and more significant bend. I got fed up and saw another uro this time one from NYU, he looked at he pictures I took on a cellphone told me I had "mild" deformity and to take the Vit E and maybe look into an "extender". Since im on Medicaid and a fixed income, getting treatment has been next to impossible especially since I have to argue that I even have it! I should also mention I wsa also finally diagnosed with CPPS or chronic prostaitis (non bacterial) and was on a Beta Block for one year before the peyronies occured. I am 27 years old and wondering if this is going to be the rest of my life, suffering with an illness that has no cure, no known "cause" and generally it seems, not much interest in the general medical community to research. What treatment can I try ?

[George999]

Your best shots at stopping Peyronie's are VED (traction can also work, but not so well with "dents"), Pentoxifylline, and CoQ10.  Most importantly, you need to find a doctor who knows the latest Peyronie's treatments.  This would be a urologist who is a Peyronie's expert (beware, most of them *think* they are since they read about Peyronie's in med school, but they actually don't have a clue), or a sexual medicine specialist.  Being located in New York, you *should* be able to find someone.  You might carefully scan over the posts in the Urologists and other doctors topic to see if you can find someone nearby.  You also could post under that topic asking if someone here knows a good Peyronie's doc in New York.  MOST IMPORTANTLY, you need to understand that there ARE effective treatments for this disease, BUT Vitamin E is NOT one of them.  I wish you the best!  - George

[chefcasey]

If you're in NYC, make an appointment with this doctor: http://www.mskcc.org/prg/prg/bios/777.cfm

He is the one of the best Peyronies Disease specialists on the east coast.

[George999]

There you go!  Thanks Casey!  - George