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Intimacy, Sexuality, and Peyronies Disease 

Intimacy and Sexuality after Peyronie’s Disease

Peyronie’s Disease (Peyronies Disease) can lead to multiple problems in intimacy and sexuality. Intercourse may become painful, difficult, or even impossible, depending on the nature of the plaque. Shame and embarrassment over the appearance of the erect penis may lead to a reluctance to attempt intercourse. Men often develop an emotional isolation due to the private nature of the problem, and attendant difficulties in finding someone to talk to about it. Depending on the nature of the Peyronies Disease (or the contributing causes, such as atherosclerotic disease, or diabetes), erectile dysfunction (ED) can also interfere with sexuality. Depression and anxiety, especially over an uncertain future, all may interfere greatly with a man’s sexuality.

In the context of a committed relationship with a partner, the emotional isolation and shame a man may suffer can become terribly harmful to the relationship. Emotional withdrawal, acting out in anger and frustration, blaming and shaming, and other similar behaviors can harm - sometimes irreparably - a relationship. For a partner of a man with Peyronies Disease, feelings of personal responsibility for the Peyronies Disease (one potential cause is “trauma during intercourse”), sadness over a loss of intimacy, feelings of guilt for wishing he did not have the problem (a “good partner wouldn’t care...”), or anger at the problem (“Why us?”) can all affect how a couple respond to Peyronies Disease. And, of course, how we respond to Peyronies Disease can affect - greatly affect - how our partners deal with or behave about this problem.

For those of us who struggle with Peyronies Disease, we have identified some common themes, and potential solutions, that come up again and again. We who have walked down this road already, or who are still on it, strongly believe that those entering into this new and frightening territory for the first time might find some of these thoughts to be of value. When we speak of partners and relationships, for the sake of simplicity we may use “him” or “her”, or “husband” or “wife” in our posts, but we all recognize that Peyronies Disease does not discriminate in who might be affected. It may affect a single man without a partner, or a gay man in a long-term relationship with another man. We believe, though, that the differences between us are not as great as our commonalities, and hopefully any reader can take away from this some words that may provide comfort, or inspiration.

Isolation and Withdrawal

Many men are not very good at either having feelings, or expressing them clearly. Moreover, when we are faced with some feelings, such as uncertainty, we often find it easier to slide into a more familiar feeling, with which we are more familiar. Often, in times of chronic illness, loss or grief, men may take their feelings of fear, uncertainty or frustration and turn those feelings into the more familiar feelings of anger or sadness. These feelings are more common, and much more familiar, and in a way, more comfortable. We know how to be angry - what we don’t know so well is how to be uncertain. We know how to be sad or depressed - it is harder to be very afraid. So men may struggle with a limited range of emotional expressions, based on a lifetime of experiences, and find that these responses do not serve them well in the long haul of a chronic and uncertain process like Peyronies Disease. Needless to say, such responses as rage or withdrawal do not help the primary source of support for most men - their relationship with their partner.

In a relationship, there are often patterns of behavior that serve us well enough most of the time, but which fail us under more challenging times. Over a long period of time, we can find ourselves quite isolated emotionally when our standard coping mechanisms do not work for us any more. In dealing with Peyronies Disease, the same “rules” apply that can make or break any relationship. Dr. Gottmann describes the “four horsemen of the apocalypse” for a relationship. These behavior patterns are Criticism, Contempt, Defensiveness and Stonewalling. Similarly, he describes relationship and communication skills that help relationships. Central to the likelihood of a relationship thriving is an ability to state one’s feelings to the other, and to allow the partner to state her feelings. This is not to be a treatise on relationships, but again and again, we have read on our forum of couples that are floundering because of a basic inability to communicate. The man with Peyronies Disease may be paralyzed with fear and shame about his problem, and simply unable to communicate how he feels (if he can even identify his feelings) to his wife. She - the single most important source of emotional support in his life - is viewed as likely to loathe him or to fear him for this problem. And again and again, we read here that the feelings of women are precisely the opposite.

Instead of wanting to leave him, they are eager to help him. Instead of finding him repulsive or inadequate, they have increased feelings of tenderness and affection for him. Women do not view men only for their penis; it is not unimportant, but it is not the only dimension of a man. But men often do not even hear that message, because they are so deeply lost in their depression and anger over the illness.

Breaking free from emotional isolation is the key to surviving Peyronies Disease; without the ability to simply talk to your partner about what is happening, you will never be able to move ahead with recovery. Men with Peyronies Disease can do all sorts of self-destructive and hurtful things. He may wait for it to go away or deny a problem exists. He may refuse to have sex or to be intimate at all. He may lash out in anger or blame his blame his partner for the Peyronies Disease. He may withdraw in isolation towards drugs or alcohol to numb his hurting soul. He may turn to compulsive sexuality or a sex and love addiction (perhaps with his partner) to try to maintain his “normalcy”, withdrawing from a healthy and nurturing relationship in a primary love relationship. How men respond to Peyronies Disease is flavored greatly by what coping skills they already have, and what has worked for them in the past during times of stress. Again, ending the emotional isolation and reaching out for help is the key to recovery from this problem.

Hope and Recovery

Men with Peyronies Disease often feel an overwhelming sense of hopelessness. They may feel that their very core identity as a man - as a person - is defined by their sexual ability. Even if their sexuality is not an ascendant part of their personal identity, they will still often lose a strong sense of self with the development of Peyronies Disease. That you are here reading this suggests already that you or your partner are already seeking to break away from those more narrowly defined definitions of selfhood. As stated above, it is often the sense of uncertainty that causes such pain emotionally. If I knew for a fact that surgery was my only option, or that my Peyronies Disease would get better with vitamin E, or that verapamil would work - if I only knew, then I could prepare to get on with my life. But usually we do not know - and that is where the fears can start.

Men are often more comfortable with problem-solving than they are with dealing with feelings. A husband who might drive his wife nuts with his need to “fix things” for her instead of just listening to her, is the same guy who, faced with Peyronies Disease, may dive into medical and surgical therapy and neglect to attend to how he or his wife is doing emotionally. He may hook up electrodes to deliver Verapamil to his penile plaque, but refuse to touch his wife “until this thing is taken care of”. Such a “can-do” approach may help with getting a backyard project completed on time, but will not help his relationship. Again, breaking free of the emotional isolation is key to getting through Peyronies Disease as a couple. The good news is that taking an active and “can-do” approach to dealing with Peyronies Disease, does not mean that one cannot, or must refuse to delve into the emotional realm with one’s wife.

So what are the “can-do” things a man can do to make his Peyronies Disease stop or get better? There are many things he can do: supplements, medicines, vacuum erection devices, stretching of plaque daily. The number of medical and surgical approaches are many, and hope can build as one takes charge of one’s recovery from Peyronies Disease. The simple act of starting to “do something” can be empowering for the man with Peyronies Disease. The nature of things that we can do for Peyronies Disease are many, and not the topic of this piece. It is enough to say that there is no perfect treatment for Peyronies Disease but that with perseverance and time and effort, most of us can get better.

“Fine”, you say, “but what about now, when I am hurting and unable to have sex the way I like it?”

Well, we have some ideas here too - after all, we have been there, too. We’ve tried emotional isolation, living in fear and anger, denying our feelings of sadness and uncertainty, withdrawing from others - we have already done it all. We've done those things and they don't work. Here are some of the things that do work, and have helped us:

1)Talk about how it feels. Tell your partner that you are angry that you can’t have rough and tumble sex. Tell her that you wish you could still feel safe when she is on top of you. Tell her that you are afraid that you will never be able to have sex again, at all. Tell her that you are afraid she will leave you. Tell her that you are afraid that she will start cheating on you. Talk about all of it. Try to avoid “you” statements, and try to use “I” statements (example: “You’ll probably leave me” versus “I am afraid of being abandoned”)

2) Listen to her talk about how it feels to her. Let her tell you that she is afraid of never having sex again. Listen to her say that she is afraid that you will “give up” because of Peyronies Disease, and kill yourself or leave her. Listen when she says that she is afraid that you are bottling it up. Listen without judging or assessing, or criticizing, expressing contempt, or defensiveness or stonewalling.

3) Nurture non-sexual intimacy. This is not a pale substitute for sex, but is rather the nourishing food that will sustain you along the road to recovery. It is through true intimacy that you will be able to share feelings, and receive support as you try to heal from Peyronies Disease. None of us may think that a nice long walk is “better” than making love on a pleasant summer day. But we know that eventually making love on that summer day will happen again, and it will be best done between two loving partners who have worked on their intimacy through the early stages of Peyronies Disease. Even if how one makes love feels or looks different than it used to look, the key to it happening at all is emotional intimacy.

4) Learn more about sex. As if, you might say. What have I to learn? Well, most of us are still learning. We may find that avenues we previously were indifferent to, are now more appealing to us. But dealing with Peyronies Disease requires a fierce intimacy, and a shameless but private sense of exploration. If you have a history of favoring penetrative intercourse, it may seem like a poor substitute to spend more time on what you might have labeled “foreplay” (but which many of us simply call “making love” - it does not have to come “before” anything!). However, your partner may feel otherwise! Especially after an hour of lightly kissing and looking into each other’s eyes, or an hour of erotic massage.

If pain is a part of the problem with Peyronies Disease, remember that it usually resolves with time. With some pain, non-steroidal anti-inflammatory medicines (i.e. Advil) can reduce the pain of intercourse greatly. If angulation with the deformity makes intercourse “impossible”, consider the possibility that you might be wrong. A modified position, as shown in the figure on the left, can allow a man with a deviation to the side to penetrate quite well. Similarly, entry from behind or while standing my be easier than standard “missionary style” intercourse.

Developing not just skill, but in fact a gusto for alternative forms of sexual gratification, can make Peyronies Disease not an “affliction”, but an opportunity for personal growth. Your penis may bend a lot, but if it can still get hard and can still ejaculate, you can still enjoy sex. And even if your penis does not get hard, or ejaculate, you can still enjoy sex. The pain from any illness may not be optional, but suffering is. You can choose to thrive with Peyronies Disease.

I hope that this basic review offers both hope and inspiration to those with Peyronies Disease, and to their partners.

Peyronies Disease Society (PDS)
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