Who is a Peyronie’s Disease Expert?

The problem of the Peyronies specialist

The problem for a man with Peyronie’s disease is much greater than his physical condition. If it were not bad enough that there is no known cause and no known cure for Peyronies disease and that most medical doctors prefer to rush out of the room rather than explain this problem, there is another layer of distress to deal with when you have PD.

It appears that even within the medical profession there is disagreement about who should provide Peyronie’s disease treatment. While reviewing an internet Peyronies forum recently I discovered an interesting Q/A.  This brief exchange demonstrates just how great the difficulty is for any man who has a curved penis to know where to go for help.  The doctor’s name has been omitted only because it is actually not important to this discussion. Suffice it to say that this doctor is considered a Peyronies specialist and practices in one of the largest US cities. His answer says a lot about the low knowledge and poor experience level of the average general practitioner and urologist with Peyronie’s disease.  It is both amazing and sad to think he believes so few doctors are capable of providing good care for this problem.

I have been diagnosed with PD by a urologist 3 months ago. I am 59. He has prescribed 800 IU of Vitamin E daily & also Infam-away (a hi-potency Enzyme formula) capsules 6 daily on a empty stomach. Nothing has helped after taking these medicines for 3 months. Erections are very painful and curvature has developed to the left. An indentation about 1″ below the glans has also developed. He has basically told me that there is nothing else he can do. My primary care physician admits that this is a disease that not much is known as to the whys and what will work to help the pain and hopefully stop or reverse the curvature which at present is 30-40%. I was given a pain killer to help especially if erections get too painful. Are there any over-the-counter or on the internet medicines that may help?

Dr. XXXXX Answers: There are no known over-the-counter products of benefit in Peyronie’s disease. Most urologists know little about this condition and are generally not completely up-to-date on treatments and we suggest that you seek out a Peyronie’s disease expert for evaluation and a discussion of treatments.

From his response you could almost hear the professional rivalry and his impatience with his medical colleagues who he thinks do not know as much as he thinks he knows.  You will also notice he did not offer any helpful advice to this man who asked the question. If you should not go to a urologist for a problem with your penis, then to whom should you go for care?  If “most” urologists do now know enough about PD to be current with care, how is the average patient to know who is safe to go for care?  No urologist has on his/her business card, “I am a urologist but it do not know how to treat PD.”

Many of the people who write to me at the PDI website info@peyronies-disease-help.com live in small states and areas of low population, with poor access to a urologist and have no idea who a “Peyronie’s specialist” might be.  This is why so many men who contact me after going through the medical route of Peyronies treatment are totally confused, frustrated and angry about their medical care. While I do not agree with the opinion of this Peyronie’s specialist, “[t]here are no known over-the-counter products of benefit in Peyronie’s disease,” I can only assume he is referring to the absence of studies in medical journals about non-drug treatment of PD and not his own private investigation or experience.  This tends to be true in this country because our medical doctors are not comfortable or experienced doing independent thinking. They only repeat what the drug companies and the multi-million dollar drug research have told them is the truth. This truth of course changes when that same multi-million dollar drug research is found to be false, full of bad research, or riddled with corrupt findings.  When a new “wonder drug” is suddenly pulled from the market after patients are made worse or die from the prescribed drugs they are given by doctors, the doctors are told to think and prescribe in a different way.  They are given new truths from the drug companies and new drugs. In Europe it is different.  This is why so many new ideas and innovative discoveries come from Europe.

In my own opinion, it is best to attempt to promote your own spontaneous recovery from Peyronie’s disease by doing all that you can to increase your body’s ability to heal and repair the curved penis plagues you.

Penis Doctors or Peyronie’s Doctors? – Take Your Pick

Doctors who specialize in Peyronie’s disease

When you think about going to a “Peyronie’s specialist,” you should understand a few things that could make all the difference in the world to you.  You should also know that Alternative Medicine is your safest and most logical approach to Peyronie’s treatment – more about that at the end of this article.

Each month I am asked for the name of a few Peyronie’s doctors; someone who specializes in the treatment of Peyronie’s disease, in a particular part of the country or a specific city. My answer that I do not know of any such doctor always seems to be a surprise.   Often a follow up question is posed in which I am then asked for the names of penis doctors, and again I give the same answer.

For anyone interested in finding a Peyronie’s doctor, first consider that Peyronie’s disease is known as “the doctor’s nightmare.”   Notice, the name is not “a man’s nightmare,’ or “a curved penis nightmare,” or “a patient nightmare,” but “doctor’s nightmare.”   This suggests how much doctors in general do not like dealing with Peyronie’s disease.  The average doctor does not like to deal with the diagnosis and treatment of Peyronie’s disease, as well as the many valid complaints and exaggerated demands of both the men and women who must live with this problem.  Frankly, we men with Peyronie’s disease are often a royal pain in the butt for an MD to deal with.

Peyronie’s specialists

Most often it is the urologists who come closest to the idea of being penis doctors or Peyronie’s doctors.  But even they often want to avoid the many frustrations and long explanations that are a part of working with men who have Peyronie’s disease.  I guess that 99.4% of men who are given a diagnosis of Peyronie’s disease have not once ever heard of it before it is dumped on them.  That this condition exists is a total shock to the man who first learns he has the problem. And just like the denial phase of someone who learns of the death of someone, there is a denial phase when first being told that the reason for the penile curvature, pain, or strange lump is an interesting thing called Peyronie’s disease that has no known cause and no known medical cure – other than Peyronie’s surgery.   This news creates a lot of denial issues in the patient that the doctor must take the time to explain away.

It is said that no one is happy while dealing with Peyronie’s disease.  Another reason the doctor is not happy is because he or she has no standardized or accepted form of medical treatment to rely upon.  Generally, there are four three basic approaches for managing this problem medically:

  1. Offer no treatment, but simply monitor the progression of the problem. Suggest the patient come back in six months to determine if the problem has deteriorated enough to warrant the risks of surgery.
  2. Offer the patient to either “try verapamil or cholchicine or POTABA for a while, although I have not had much luck with any of them, or you can always use some vitamin E if you would like.”   This kind of low key and unenthusiastic recommendation is based on the fact that none of these approaches work, and the doctor knows it.  The MD is put in a tough position because he or she cannot help PD, and this is a known fact from the start.  Talk about a negative situation that only gets worse as the penis shrinks or sex becomes difficult as a curved penis develops.
  3. Suggest surgery right away.
  4. Go home, ignore it, and try to learn to live with it.

These four options all seem wrong to the thinking patient. Yet, the doctor feels obligated to offer some kind of treatment when none actually exists, and he knows ahead of time that the patient will be upset when nothing helps.  Long explanations, distrust, and complaints will follow over a few office visits until the patient figures out the doctor really has no Peyronie’s disease treatment. The doctor knows ahead of time he will look incompetent and non-caring no matter what he does.  Hence the term, “doctor’s nightmare.’

For all these reasons only a few medical doctors have focused on Peyronie’s disease treatment.  Some of those who work in this area of urology are:

Thomas Lue, MD – Los Angeles, CA
Culley Carson, MD – Chapel Hill, NC
Lawrence Levine, MD – Chicago, IL
Martin K. Gelbard, MD, Los Angeles, CA
Sudhakar Krishnamurti, MD – Hyderabad, India

These doctors are essentially using the same drugs as any general practitioner or urologist, with perhaps maybe the surgery they perform being different in some cases.   You need to understand that while these doctors can be called Peyronie’s specialists because they hold themselves out to being more interested in or spending more time in the area of Peyronie’s disease treatment and diagnosis, there is not that much different they can offer than the doctor down the street in your town.  The great difference with these doctors is the number of people they see who have PD, so they will have more experience in this area.

For this reason when some calls to ask about a Peyronie’s doctor, I suggest they just contact a local urologist they have confidence in and stick with him.

Since there is no accepted standard medical treatment for Peyronie’s disease, and so many doctors suggest not doing anything for the first 6-18 months, I strongly suggest that a person consider building up his own ability to heal and repair the Peyronie’s plaque or scar.  Information can be found at natural Peyronie’s disease treatment.