Working with Your Doctor

Dr. Mulhall’s suggestions for choosing a Peyronie’s disease doctor.

Written by Dr. John P. Mulhall, M.D.

In general, the specialty that evaluates and treats Peyronie’s disease is UROLOGY. Urologists are physicians that train in the medical and surgical treatment of diseases of the kidney, bladder, prostate, testis and penis (among other organs). However, Peyronie’s disease is not a particularly common condition and some urologists see very little of this problem in training. There are many training programs that do not have a urologic sub-specialist with expertise in Peyronie’s disease and thus the level of training at some centers makes it difficult for an otherwise excellent urologist to be facile in the management of Peyronie’s disease. This is most important when it comes to choosing a surgeon for reconstruction for penile deformity. For many urologists the only surgery they perform for a patient with Peyronie’s disease is a penile implant. Many have no experience in doing other surgical procedures that do not require placement of an implant. In this situation you should consider seeking another opinion.

It is impossible to give you all the information necessary to make your decision in choosing a physician with expertise in this area, but the “expert and associate list” on this site is a start and some pointers below may aid you in making your decision. When in doubt seek a second opinion, after all, it is your PENIS, you only have one and it cannot be replaced! When setting up an appointment, simply asking the physician’s assistant how many patients with Peyronie’s disease are seen by the physician is a good start. If that number is one per month then you may need to consider seeing another physician.

A Peyronie’s disease interview cannot be conducted in 5-10 minutes so if this is all the time you are given you may need to consider a second opinion. Many experts routinely spend 30-45 minutes with Peyronie’s disease patients. The Peyronie’s disease discussion should cover the cause, the natural history of the condition, medical treatment options and, for patients with advanced disease not responsive to medical treatment, surgical options.

The physician should be comfortable answering your questions and should have some basic figures available for the success with various treatments. If the doctor’s primary recommendation is do nothing or come back in 6 months, then you’re better off seeking care elsewhere, as this physician has demonstrated their lack of interest and knowledge. Experts have heard this story way too often and the possibility to institute conservative/medical therapy during the acute phase is lost. Clearly, not all patients will respond, but it is still the right time to initiate some treatment. Do not be afraid to see a physician more than once if all of your questions have not been answered or have not been answered to your satisfaction. Any physician who begrudges you this time is most probably not a match for you and may not have a particular interest in Peyronie’s disease.

When choosing a surgeon, be extremely careful and define the level of training of the physician in this complex surgery. In general, expertise is gained and maintained by the regular performance of any operation. The more complex the procedure, the greater the number that should be performed to achieve an expert level. Have a full discussion about the pros and cons, risks and benefits of a particular procedure. Ask the surgeon what to realistically expect with regard to penile length, penile sensation and degree of deformity after the procedure.

Urologists specialize in diagnosing and treating conditions that affect the kidneys, bladder, prostate, testes, and penis. However, not all urologists have specific experience in diagnosing and treating Peyronie’s disease. Getting a referral to a urologist who is knowledgeable about this condition is key. You can also search the Physician Finder. When you call to set up an appointment with a urologist, ask how many patients with Peyronie’s disease the doctor sees. If that number is one a month, consider finding a more experienced urologist.

Talking with Your Doctor

Talking about Peyronie’s disease can be difficult and embarrassing. Many men feel uneasy or uncomfortable even bringing up the topic, whether they’re seeing a new doctor or a doctor they’ve seen many times. However, since Peyronie’s disease can only be diagnosed by a doctor, having this conversation is a necessity.

When talking with your doctor about your symptoms, it is important that you provide as much information as possible, so your doctor can make an accurate diagnosis and recommend treatment options that are most appropriate for you. It is also important that you ask lots of questions — not just about your diagnosis, but what you should expect as far as disease progression or treatment outcomes.

These tips can help you get the most out of your appointment:

• Prepare for your appointment in advance.
• Use this doctor discussion guide to help you prepare for your visit. You can also bring it with you to help you remember the points you want to talk about.
• If you have curvature, take a picture of your penis from the top and the side when it’s erect. It may be difficult to take a good picture by yourself so, if possible, ask your partner to help. Your doctor will want to see your pictures during your first or second appointment to determine the severity of the curvature.
• Explain your symptoms as clearly as you can. Be direct.
• Describe how your symptoms affect you — not just physically, but also emotionally.
• If you don’t understand something your doctor says, ask for an explanation.
• If possible, bring your partner with you for support.

What happens during an evaluation exam?

Peyronie’s disease is often diagnosed based on a man’s medical history and an examination of the penis.

Dr. Levine’s explanation of an evaluation exam.

Written by Dr. Laurence Levine
The man who presents to the urologist for evaluation of Peyronie’s disease will typically undergo a detailed history to determine when the problem was first noted, what symptoms he may have experienced, including pain, palpable nodule, and/or curvature, and whether the deformity is stable or still evolving. In addition, understanding whether there are any other areas of the body that might have developed similar scars, such as within the hand (known as Dupuytren’s contracture), and whether there is family history of any other scarring disorders. Prior treatment for PD will also be important to review.

It is important to understand how this has affected the man’s sexual function. Therefore questions about the patient’s penile rigidity will be asked. A man who has more advanced erectile dysfunction with Peyronie’s will be taken on a different treatment path than one who still has good rigidity but has a penile deformity interfering with sex. He will also be asked about his estimate of the nature of his deformity, including whether there has been shortening of the penis (up to 4 inches has been reported), indentation causing the penis to be unstable and buckle when pressures are placed on the erect penis, and estimates of direction and degree of curvature. The patient should be well aware of his past medical history, as well as any medications, including over-the-counter non-prescription drugs, that he may be taking.

Physical examination is then performed. Typically this is an exam focused on the penis, where the entire shaft of the penis is palpated, typically on gentle stretch. The stretching is not designed to hurt the patient or cause any further injury, but does allow the doctor to better identify the location and nature of the plaque. Stretched length of the flaccid penis is typically measured. Some experts will assess penile sexual sensitivity with vibration testing.

In most advanced centers, penile duplex ultrasound is performed. This is a multi-step procedure. Initial surveillance with ultrasound will determine if there is any evidence of fibrosis (scarring) within the vascular tissue of the penis, which is unusual in men with Peyronie’s disease, but up to 30% will have evidence of calcification (unusual bone formation) within their scar. Following this, an injection of a drug which will cause the blood vessels in the penis to dilate will be given. This is typically a painless injection with a tiny needle. The goal is to create a full erection similar to or better than what the patient experiences at home, so that the deformity can be examined and measured. In addition, blood flow velocity is assessed with this sophisticated ultrasound device. All of this can help the physician to understand the nature of the problem and plan treatment options.