Living with Peyronie's Disease

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Being diagnosed with Peyronie's disease can be stressful. For some people, knowing that their penile curvature is a medical problem can make it harder to deal with, while others who are diagnosed with Peyronie's disease find it doesn't have that much of an effect on their lives. For those who do need treatment, support is essential. It may be useful to talk to an individual or couples therapist, or even a sex therapist, to address the changes in your intimate life. And it is important to look into different options for treatment to see what makes the most sense for your situation, your priorities, and your needs. Not everyone with Peyronie's disease has the same concerns about their curve.

Emotional

It is unsurprising that being diagnosed with Peyronie's disease can take a significant toll on a person's mental health. Research suggests that as many as half of all men with Peyronie's experience some symptoms of depression. More than four out of five men report being distressed by their Peyronie's disease to at least a mild degree.

Peyronie's can also take a toll on a romantic partnership. Up to half of men with the condition report that it has negatively impacted their relationship.

Because of the weight that many cultures place on virility, any condition that affects erectile function or penis health can lead men to feel deeply ashamed. Some men with Peyronie's have revealed that the disease has made them feel like less a man, ugly, or deformed.

Such feelings of shame, or of lowered self-esteem, can lead to decreased confidence in initiating sexual interactions. In relationships where the man has historically taken most of the responsibility for initiating sex, this can deeply limit opportunities for sexual engagement with his partner.

As hard as they can be to experience, feelings of sadness, distress, shame, and stigma are normal. Sexual health is an important part of our overall health, and it's normal to be distressed when it's disrupted. The trick is to find ways to deal with these feelings so that you can still get the help that you need.

It can be useful for some people to work with a therapist experienced in dealing with sexual issues for help not just in coping with the condition but in finding ways to discuss Peyronie's symptoms with a partner or a medical provider.

It may also be useful to write down questions or thoughts before seeking care. Doing so can make it easier to bring up topics that are otherwise difficult to discuss.

Finally, support groups can be a great way of dealing with the feelings of shame and isolation that many people experience after a Peyronie's disease diagnosis. It's harder to feel alone when you're talking to other people dealing with the same struggles.

Physical

As the causes of Peyronie's disease are not well understood, it's difficult to recommend any specific ways of coping with the physical aspects of Peyronie's. However, as cardiovascular health has been shown to be a risk factor for Peyronie's disease, it's reasonable to assume that improving your cardiovascular health would decrease the risk of further disease or disease progression.

Things that you can do to improve your cardiovascular health include:

  • Stopping or reducing any cigarette or cigar smoking
  • Eating a healthy diet
  • Engaging in regular, moderate exercise

In addition, if you have diabetes, it may be helpful to work on gaining tighter control over your blood sugar levels. There's some evidence that diabetes is associated with Peyronie's disease risk. However, that evidence is far from conclusive.

Finally, don't let shame keep you from dealing with any pain associated with your penile curve. Talk to your doctor about what over-the-counter medication, or prescription medication, will be most helpful in reducing any pain you experience with sex.

Social

It can be particularly difficult to seek help for health conditions that affect sexual function. It's normal to feel embarrassed or uncomfortable talking to your medical provider, or your partner, about changes in your sexual function.

One thing that can help is seeking out online or in-person support groups where you can discuss your condition with other men who have also experienced Peyronie's disease. Although no substitute for the advice of a medical provider, support groups can help you feel less alone in your journey of healing. They can also help you develop coping skills and figure out the best questions to ask when you're seeking care.

There are a number of online Peyronie's support groups. Some of the larger ones include:

  • The Peyronie's Disease Society's Support Forum is a large, very active, support group run by people with Peyronie's disease, for people with Peyronie's disease. It has more than a dozen sub-boards to address just about any topic on which you might have questions.
  • Inspire Peyronie's Disease Forum is another large, active forum. Many posts are restricted to community members. Therefore, joining the forum gives you access to increased information.
  • The Peyronies.org Forum is less of a forum and more of a question and answer site for men who have Peyronie's disease. It is run by a doctor who specializes in treating the condition.
  • FrankTalk.org is run by the Erectile Dysfunction Foundation. They have a Peyronie's Disease support forum that may be particularly useful for men also experiencing erectile dysfunction.

It may also be helpful to talk to your urologist to ask if there are any local groups for men with Peyronie's disease. If you have a partner, they may also be interested in seeking out their own supports.

Couples therapy and sex therapy may also be helpful in dealing with how Peyronie's symptoms affect an intimate relationship. However, the most important way to deal with sexual changes in a relationship is to communicate.

When erections have become difficult or painful, figuring out how both you and your partner can continue to enjoy sexual interactions requires being willing to talk to each other about sex. Depending on the type and extent of your curve, you may discover that certain sexual positions work better, or worse, than they used to.

Being open-minded, communicating, and finding ways to play together and explore during sex can help you retain or restore a sex life that has been frustrated by Peyronie's disease. It may also be necessary to talk to your doctor about medication for pain or erectile dysfunction.

Practical

Peyronie's disease doesn't need to affect most areas of your life. In general, problems associated with Peyronie's are restricted to the bedroom. However, if your Peyronie's disease needs treatment, it's important to think about how you are going to deal with aftercare in advance.

Some surgical options may require you to take time off work, or go to the doctor for multiple appointments across a short period of time. If that's the case, you do not need to disclose the reason you are going to the doctor to your employer or HR department.

Your urologist should be able to provide a generic note explaining any need for missed time, or changes in job function, that doesn't require them to disclose why you're getting treatment.

It's important not to let shame or fear keep you from getting the care you need. The key is figuring out what you need to feel comfortable talking about your situation. Communication with your provider can help you find out if your Peyronie's needs treatment and the options that are the best fit for you. Communication with your intimate partner can help you find ways to improve your sexual interactions and make any adjustments necessitated by your curve.

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