beyond 9% living confidently with Peyronie s disease Patients, partners & physicians working together

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1 beyond 9% living confidently with Peyronie s disease Patients, partners & physicians working together

2 Whether you ve just been diagnosed with Peyronie s disease or have known for some time, it can be difficult to see beyond the frustrations and limitations that confront you. But rest assured, you re not alone. In fact, about 9% of men (1 in 11) may develop Peyronie s disease at some point in their lives. Peyronie s disease can occur in men of any age from those in their twenties to those in their seventies but it most often occurs during middle age. Because many men remain sexually active well into later life, more and more older men also experience the frustrations caused by this condition. And while doctors are not sure if Peyronie s disease can be inherited, it does tend to run in some families. That means if a man has Peyronie s disease, his male relatives may be more likely to eventually have it, too. To learn more about risk factors and other conditions associated with Peyronie s disease, please visit /factors. 1

3 What is Peyronie s disease? What are the signs and symptoms? Peyronie s disease is a wound-healing disorder. This means that injury or damage to the penile tissues, particularly within the outer penile tissues, activates a scarring process that goes well beyond the normal healing process. There is an excess buildup of collagen in the penis that leads to the formation of scar-like tissue called plaques. When it comes to Peyronie s disease, no two men are the same. For some, it appears quickly, seemingly overnight. For others, it develops over time. When Peyronie s disease does start, there are certain symptoms you may notice: Now, you may sometimes wonder if you did something wrong or didn t do something to prevent it. Neither is likely the case. Penile plaques develop in response to a significant trauma or a series of smaller ones like those during normal intercourse. They keep erectile tissues from working normally and can lead to changes in the shape of the penis that may include curvature, indention (e.g., hour glass shape) or shortening (i.e. loss of length). In some cases, these changes can make it difficult, or even impossible, to engage in sexual intercourse. > Lumps, called plaques, under the skin of the penis shaft > Changes in the shape of the penis when erect curvature, indention, narrowing, or even shortening > Pain with or without an erection > Erectile dysfunction Penile plaques are different from those that build up in blood vessels in other parts of the body. To learn more about the symptoms of Peyronie s disease and what may be causing them, please visit /symptoms. 2 3

4 How does Peyronie s disease progress? How can Peyronie s disease affect your life? The disease occurs in two phases: acute (active) and chronic (stable). Acute Phase The acute phase can last up to 18 months and is when most of the changes in the penis take place, including the development of plaques and curvature. Pain often occurs with or without an erection. Chronic Phase For most men, the chronic phase begins within months after symptoms first appear. During this phase, plaque and penile curvature are not likely to worsen. However, they are not likely to improve. Penile pain often diminishes, but erectile dysfunction may develop. There is also the possibility of a return to the acute phase if another injury occurs. Living with Peyronie s disease can go far beyond the physical for you and your partner. Feelings of anger and helplessness can affect your confidence and how you relate to others. It is possible, though, for you to get back to being you. Consider the following approaches: > Be your own advocate talking to an experienced urologist and doing research to obtain credible information about the disease and treatments is essential > Talk to your partner overcoming isolation is an important part of coping > Communicate with others who have Peyronie s disease knowing you re not alone can help relieve anxiety > Think differently about intimacy finding new ways to be intimate with your partner can boost your confidence The bend, or curve, in the penis is measured in degrees. You may hear this referred to as degrees of curvature. It can be especially difficult to have a conversation with your partner about Peyronie s disease. For some suggestions on how to start, visit /intimacy. 4 5

5 What are your treatment options? When you have Peyronie s disease, nothing is more important than learning what you can do about it. There is currently no cure, and many myths and misconceptions exist about which treatments are effective in preventing progression or correcting penile deformities. At the Association of Peyronie s Disease Advocates (APDA), we want to provide you and your partner with as much valid information as possible to help you make the best possible treatment decisions. Surgery. Surgery is recommended only for men whose disease is in the stable phase and is usually reserved for those who have extensive plaques or difficulties with intercourse. Surgery can be effective in correcting penile deformities, but unwanted effects like penile shortening or narrowing, numbness, and erectile dysfunction may occur. The treatment option you choose will depend on many factors, including your personal preference, whether your disease is in an active or stable phase, and your doctor. Nonsurgical treatments. Nonsurgical options may be recommended if your Peyronie s disease is in the early, or active, phase. Treatments being used, with varying results, include: > Oral medications > Injection therapies > Combination therapy > Traction therapy (stretching) > Vacuum therapy To learn more about specific treatment options and how they differ, please visit /treatments. 6 7

6 Why should you talk to a urologist? Urologists specialize in diagnosing and treating conditions that affect the kidneys, bladder, prostate, testes, and penis. It s important to find a urologist who is experienced in diagnosing and treating Peyronie s disease. Be sure to ask any questions you have and bring your partner with you for support whenever possible. Follow-up appointments will allow your doctor to monitor disease progression and discuss with you possible treatment options. Going beyond 9% * If you have Peyronie s disease, understand that you ve done nothing wrong. You re not alone. And that valid information and the support of your partner are crucial to moving forward. At the APDA, we understand the challenges you re facing. We re patients, partners and physicians dealing with it each and every day. And whether it s increasing your knowledge, connecting you with others, or helping you understand your options, we re dedicated to helping you go beyond Peyronie s disease and back to a more fulfilling life. Talking to your doctor about Peyronie s disease can be intimidating. The discussion guide at /guide can help you talk to your doctor about your symptoms and what treatment may be right for you. To learn more, please visit. Patients, partners & physicians working together * Based on current published information, Peyronie s disease reportedly occurs in 3%-9% of men. It is the belief of the ADPA that Peyronie s disease is underdiagnosed and goes beyond 9%. 8 9

7 About APDA Established in 2002, the Association of Peyronie s Disease Advocates (APDA) is a nonprofit organization dedicated to every Peyronie s disease sufferer, his partner and his family. Our mission is to empower each man to be a true self advocate by providing accurate, up-to-date information, meaningful support and a thorough knowledge of treatment options. The better a man with Peyronie s disease understands how to deal with its effects, the better he can move forward with his condition. To learn more, please visit /welcome. sponsored by Patients, partners & physicians working together APDA, 2011