Peyronies Survival Guide - Information for New Members

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Welcome to the PDS Forum.  We sell nothing, and we run this off of our own work and money.  We do this to provide a place where you can find support and education from other men and women who have fought back against this condition.  This forum is only for people seeking answers and those who want to help them. We know you have a thousand questions ranging from "what can I do to fight this" to "how can I face life."  We know because we have all been there. Our ages range from 17 to 91 years old.  Some of us experienced our first symptoms several decades ago.  Many of us have survived, improved, even prospered.  This is our best attempt to give you one short article to read to answer some of your questions.  These answers do not come directly from doctors. They come from fellow patients and spouses that have traveled this road.

What is going on? - If you have Peyronies, you have a condition that caused your body to replace normal elastic tissue in your penis with non-elastic scar tissue called plaque.  It has no association with plaque in your arteries or elsewhere in your body.  You have Peyronies when your body forms scar tissue in the penis in places where it is not needed to heal a wound.  It replaces normal elastic tissue, often far from any injury, and it can cause deformity, much like putting a piece of Scotch tape on a balloon and then blowing it up. The resulting deformity can be a bend, narrowing or dent, or shortening of the penis. If you have scar tissue at the site of real damage on the penis that is NOT Peyronies Disease.  That is a normal healing process as long as the scar tissue does not spread over healthy tissue. Be aware that most bends are just natural variations from one penis to another and are not Peyronies Disease.  A penis is seldom perfectly round and straight any more than noses are all the same shape.  

What Caused this? If you have Peyronies Disease, no one can give a definitive answer to that question.  There are clear indications that genetic predispositions are the underlying problem. The actual event known as Peyronies Disease is then triggered by an obvious injury or by a micro-trauma you may not have even noticed.  If either the underlying predisposition is not present or the triggering event does not happen, then Peyronies Disease may never develop.  The greater the underlying predisposition, the less of a trigger it presumably takes to start the Peyronies Disease process.  Many factors increase our risk for Peyronies, but let's discuss some practical tactics to deal with it.

What do I do to cure this? While there is no "cure," several things can help stabilize the process and even reverse Peyronies Disease symptoms.  It usually makes sense to try these in a certain order.  In ranking this order, we consider:
   The likelihood that the treatment will work.
   The risk of the treatment (either to general health or to the Peyronies Disease)
   The cost
  How invasive is the treatment – Most patients and doctors proceed from less invasive to more invasive (oral meds, shots, surgery)

I will spare details at this early stage when you have many options, but I want you to know that even if you end up with a severe bend and total erectile dysfunction, there are very reliable surgical treatments to  totally restore your shape and function.

Unfortunately, no single treatment works for all, and every case seems to progress or respond to treatment in its own way.  Very rarely (less than 5% of cases) reverse on their own.  A slightly higher percentage improve somewhat over time without treatment.  Most remain the same or progress (symptoms worsen) without treatment.

Best initial treatments/actions you can start immediately - The list of first-line treatments recommended by the PDS are a combination of those recommended by leading urologists combined with over-the-counter treatments that have resulted in the best reports of success from our thousands of members.  Some of these have clinical studies supporting their benefit in treating Peyronies. These are first-line treatments because they are less invasive and have the least risk of negative side effects.  They are supplements (food-based nutrients) or lifestyle changes with few if any risk of negative side-effects.  In fact, they are likely to benefit your general overall health.
CO Q10 - 200 - 400 mg daily divided into 2 or 3 doses. (If over 40 yrs old, consider substituting the more expensive Ubiquinol)
Acetyl L-Carnitine 1.5 - 3 grams per day divided into 2 or 3 doses.
L-arginine 1.5 - 3 grams per day divided into 2 or 3 doses.
Try to minimize stress by getting plenty of good sound sleep and moderate exercise.
Consider researching and going on an anti-inflammation diet.
Erections with oxygen-laden blood supply are good, but any rough sex or intercourse with an inadequate erection is risky.  Rough masturbation is also very risky.

Pain - Pain varies greatly from case to case.  Pain can be non-existent, constant, present only during erection, or only when the penis is flaccid.  Some of these first-line treatments help resolve pain.  You can also take oral NSAIDs Ibuprofen or Celebrex to help with pain and inflammation if needed.  A topical NSAID like Voltaren can help with pain and inflammation.  Be cautious of taking both a topical and an oral NSAID at the same time.  The pain usually runs its course during the initial acute phase and resolves within 6 to 18 months, even without treatment.

It is critical to establish a baseline - There are few times where a subjective impression is less reliable than when a stressed man is looking at his penis for signs of improvement or further damage.  That is why it is critical to get objective baseline measurements.  For now, trust me on the best way to do this.  First, Get a BPSFL measurement (just mouse over the abbreviation).  If you get natural erections, then measure your erect girth at 2 points on the shaft that are easy to duplicate the next time.  I recommend right behind the head and at the base.  As an alternative, you can go for the largest and smallest diameter spot if you choose.  Now try to measure your bend angle with a protractor (you can print one online) or by photo or even tracing the bend on paper.  Write these measurements down! These measurements are critical and will tell you if Peyronies is advancing or if you are recovering ground.  Otherwise, it is just a guess if a treatment is slowly working.

OK, what is my first official step? Other than starting a few supplements today, Step number one is to get a sound diagnosis, preferably from a urologist that specializes in Peyronies Disease.  Most urologists see Peyronies Disease as a frustrating condition that makes up a tiny part of their practice, treating male and female urinary tract conditions.  A sexual Dysfunction doctor with an interest in Peyronies Disease is often a better choice.  Depending on your area and your insurance, this may mean the first step is getting a referral from your family doctor.  Sometimes you can contact a specialist without a referral, depending on your particular insurance coverage requirements.

How do I find a good doctor?  While well-known doctors with a specialty in Peyronies Disease are relatively few, most men in the U.S. will live within a couple of hundred miles of a doctor known by the patients on this forum.  There are likely many more doctors that we do not know.  Sometimes patients have good luck finding a doctor on their own either by asking questions in advance or simply by the luck of the draw. Still, the odds are against that since national surveys show that most urologists have many totally false notions about Peyronies.  Doctors recommended by this forum would usually do the following:
       Give you a hands-on examination to check for plaque (scar tissue)
       Order or perform a duplex Doppler ultrasound to check plaque and blood flow.
       Possibly prescribe Pentox and an erectile dysfunction drug along with over-the-counter L-Arginine.  The combination of these 3 items is referred to as a PAV cocktail.
       They would be open-minded and supportive of using therapy such as a VED or traction.
       They would consider surgery after a year, or more of other treatments failed, and mutually satisfying intercourse was difficult.
       They would wait beyond the initial stages before recommending injections like Xiaflex .

Preparing for my doctor's visit To some degree, this will depend on whether your doctor is one from our list or whether you decided to take a long-shot on a random urologist. To cover all bases, I will assume you are unsure of your doctor's expertise with Peyronies.

1. Do not be shy.  Doctors deal with such issues as a routine part of their day.

2. Take a photograph of your erect penis from an angle that shows any deformity accurately.  This may reduce the extent of the examination required or be an added piece of information

3. If you have a spouse or partner, take them along to take notes or remind you of questions. Begin writing down questions a few days in advance.

4. Read and take information on Pentox studies from the following FOUR (4) links Pentoxifylline Attenuates Transforming Growth Factor- β1-Stimulated Elastogenesis in Human Tunica Albuginea-Derived Fibroblasts Part 2: Interference in a TGF- β1/Smad-Dependent Mechanism and Downregulation of AAT1
Smith et al. 2011, Pentox treatment and penile calcifications in men - Peyronies Society Forums  
Quote from: Tim468 on November 12, 2009, 09:02:16 AM

Quote from: Hawk on December 23, 2008, 12:45:47 AM
Click the attachments below.  Both are good resources to take to your doctor when asking for Pentox.

5. Ask your doctor for a complete blood panel, including Vitamin D, total testosterone, free testosterone, estrogen, and PSA testing.  The information in these tests will be necessary to make decisions about your treatment plan.

Beyond Diagnosis - Hopefully, you had a positive experience with your doctor.  If you got a diagnosis of Peyronies Disease, you should also have gotten a prescription for Pentox (400 mg 3X a day with food), probably the single best first-line treatment for Peyronies Disease.  Pentox does not cure Peyronies Disease.  In many men, it does help with everything from reducing pain to partial correction of deformity, or at least stopping progression.  You should next consider getting a VED or a traction device.  This means you must read those boards on the PDS forum to make the best decision for you.  Traction takes more commitment from you, but there are many factors to consider, such as "can you get a natural erection," what is your daily lifestyle, is cost a factor.....    Many members have both traction and VED units.

Remember, this is a marathon, not a sprint.  If you are fortunate enough that the recommended first-line treatments help you, the process will be very gradual.  Do not expect to see significant improvement in a few weeks. Also, there are other supplements and routines like gentle heat that may help.  There are also more invasive treatments if these first-line treatments fail.  One of the invasive treatments with the very highest patient satisfaction rates is a penile implant, an outpatient surgery that can have a patient with severe bend and total erectile dysfunction having intercourse within 21 days. However, the treatments in this article are the starting point.  They are the ones that will give you the best result for the money and the time spent.

Psychological Aspects - The PDS has an entire board discussing just the psychological aspects of Peyronies.  It is clearly at least half of the challenge and maybe the part you have the most control over.  Men with similar physical symptoms have dated, gotten married, had children, and lead close intimate relationships with their spouses.  Others have lost wives, jobs, dropped out of school, and become social shut-ins.  Attitude and perspective are everything.  If you have not already learned this, it is time to learn that your penis does not define you.  It has little to do with the intimacy you can offer to a mate.  Many marriages have become stronger because instead of counting on a "perfect penis" to carry a relationship, men learned to include new intimacy levels that their spouse had been craving.

Women's most common complaint is that their partner withdrew, shut them out, would no longer hug, hold hands, or kiss.  They refused to discuss their issue of Peyronies but instead got angry and confrontational.  What Peyronies does to the penis very seldom ends a good relationship.  What some men allow it to do to them psychologically has often ended relationships.  This is tragic because this is the one area over which men have total control.  If need be, seek good professional counseling.  If you grow and rise above the psychological impact, you have already won half of this battle.

Best Wishes!
Hawk, Founder/Administrator

PS: Please do NOT private message questions to me about Peyronies Disease.  Post on the open forum.  We have twenty thousand members.  Most know things I do not know.  The forum's point is to post where several minds can consider, suggest, and learn and where others can learn from reading the answers to your questions.  I cannot reply to thousands of members on Peyronies Disease privately, and it defeats the very purpose of the forum.  I do try to answer private messages about how to navigate the forum and forum problems.

For further understanding of the issues and treatments watch these two 30 minute videos.  You will be better informed than many urologists.   Jesse Mills, MD, Director of the Men's Clinic at UCLA   Culley C. Carson III, MD, Professor Emeritus at the University of North Carolina School of Medicine,
Prostatectomy 2004, radiation 2009, currently 74 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums