Q&A: Living with Peyronie’s Disease
Q&A: Living with Peyronie’s Disease
Plus: an important event this weekend
Before we get started, I’d like to invite you to join me at a free online fundraiser event this Sunday at 3pm eastern. It’s called “Sex Educators for Democracy”. Learn more and RSVP here. More info at the bottom of this post!
And on to the question:
Q: I’m 50 years old and have been married for 31 years to my husband. He was diagnosed with Peyronie’s Disease in 2017. This has been an absolute nightmare for him and I. Have you ever done a podcast or written articles on how real long term couples deal with this? We aren’t dealing with it… at all. And I feel like a part of me is dying.
A: This is the first time I’ve been asked specifically about an actual diagnosis of Peyronie’s, so thank you so much for this excellent question! Your tl;dr answer: sex therapy—not because of the Peyronie’s specifically, but because you said, “I feel like a part of me is dying.” When I hear someone say that any struggle in their sexual relationship makes them feel that bad, I know the situation goes beyond the specific cause, reaching into the ways you communicate about your sexual connection, the beliefs you each have about who you are as sexual individuals and who you are as a sexual partnership, and the ideas you’ve inherited from your culture and your family histories about what’s acceptable or unacceptable, what’s “normal” or not normal, and especially what you are and aren’t allowed to say to each other about your sexual experiences.
Your tl;dr answer: sex therapy
For real. If you’ve been dealing with this—or “not dealing,” as you mention—for seven years, it is time to get support from a professional. Part of me is amazed that you could struggle for so long without seeking help, and another part of me suspects that the barriers that prevented you from getting yourselves a therapist are the same barriers that have prevented you from being table to address it together on your own. That’s how it goes, sometimes, with sex therapy—the people it would benefit most are exactly the people most reluctant to go.
Sex therapy will not treat the Peyronie’s itself, but it will provide you with (1.) a safe place to learn to talk to each other about your sexual connection, so that those conversations can be invitations to greater intimacy, both physical and emotional, rather than risky situations where you both fear hurting each other, and (2.) the opportunity to learn new and different ideas about how to connect with each other as your bodies change over your years together.
I always recommend looking for an AASECT certified provider. And while you find a therapist who’s a good fit for your relationship, I would point you to chapters 7 and 8 of Come Together, which are all about dealing with changes, including both intentional changes you might want to introduce and uninvited change that life presents.
Okay, so the Peyronie’s itself: For those not familiar, Peyronie’s disease is a buildup of scar tissue in the shaft of the penis, which most people notice when it begins to cause a bend in erections.
This is different from the normal variation in the shape of penises, which can curve in any direction. Curvy penises are caused by differences in lengths of the three bodies that make up the shaft of the penis – the two corpora cavernosa and the corpus spongiosum, through which the urethra passes. If the corpus spongiosum is longer than the corpora cavernosa, the erection will curve upward; if it’s shorter, the erection will curve downward. And if one of the corpora cavernosa is shorter than the other, the erection will curve toward the shorter corpus cavernosa. Normal variation, not associated with any dysfunction or pain. Heck, some people buy toys with curves because of the potential sensory pleasures available with a curve! FREE SEX TOY!
Peyronie’s, by contrast, develops later in life, changing the previous shape of the erection. To diagnose it, a medical provider will feel for a “palpable plaque” in the shaft of the penis. (You can usually feel it, without an erection.) It has an “active phase,” when the plaques are growing and erections can be painful, and a “stable phase,” when growth stops and, along with it (usually), the pain. Why does it happen? ¯\_(ツ)_/¯ How common is it? Researchers aren’t sure but somewhere between 0.50%-13% of penises (I did say they weren’t sure…), with a typical age of onset of 53.
I’m assuming from your question that your husband has been experiencing pain, and unwanted sexual pain is not a normal part human sexuality. It is disruptive in so many ways, not only because of the pain itself, but also because of the ways the pain makes partners feel anxious or ashamed or frustrated or despairing about doing anything sexual, for fear of that pain. If you don’t feel free to talk to each other about all those feelings, they’re going to build up between you like a wall.
Let me emphasize that from my point of view, managing the pain is the most important aspect of treatment of the disease itself, and you don’t need to worry about whether an intervention affects penis shape or size. Truly, freedom from pain is the most important treatment goal, which is why I am not about to recommend that drug you see advertised with the “bent carrot” commercial. That drug has “no evidence of improvement of pain or plaque size in any of the studies,” according to the systematic review I’m about to describe.
I wish I had better news about treatment, but nonsurgical options are not particularly well supported by the evidence – here’s a recent systematic review (PDF) that shows that pain management has, at best, moderate support for two modalities: a laser therapy that had literally just one study behind it (and a 9 month follow-up showed no difference between treatment group and placebo group), and “electromotive,” which had two (PDF) studies (PDF) behind it. Both treatments are different ways of delivering the medications that are used to break down the plaque. These studies are both small, one of them is 20 years old, and I have no idea how available this treatment is in real life. I could not tell from reading these studies whether participants were in the active or stable phase of the disease, though the recent study only included participants who had had Peyronies for less than two years, which might suggest they’re in the active phase?
The best news I can give? Your sex therapist will have better information than I do. If they do not know of providers who can provide effective treatment for the pain, they’ll very likely have a network of other therapists they can ask.
A moment of normalization: PEOPLE HAVE SO MANY FEELINGS ABOUT PENISES. A few year ago I had lunch with a group of sex therapists who spent most of the meal agreeing that they were seeing more and more individual clients, coming in because they needed a safe, neutral person to talk to about all the feelings they have about their penises. The therapists were hearing a lot of stories about how porn had warped people’s ideas about what a “normal” penis looks like and the importance of being able to get and sustain an erection.
The reality is that penises vary and they change across a person’s lifetime. All of them are beautiful, just as all trees are beautiful and all rivers are beautiful, at all seasons of their existence.
And if anyone reading this feels like this advice can apply to other sexual difficulties… yes, exactly, yes! Whenever pain or body changes impact our sexual connections, turning toward each other with kindness and compassion and curiosity and even a sense of play is the most important skill you can practice!
I hope that helps, and I hope you’re not just terribly disappointed that my answer was, in short, “therapy.”
Please join me and host Jaclyn Friedman and our amazing lineup of speakers this weekend at Sex Educators for Democracy online at 3pm on Sunday, 10/13.
Sara Nasserzadeh! Candice Hargons! Karen Rayne! Lucie Fielding! Tanya Bass! Elle Chase! Jaclyn Friedman! We’re all coming together in support of Harris-Walz, Angela Alsobooks, and Sarah McBride. You can watch free and you’re very welcome to join in on the fundraiser as well.
Hope to see you there. We’re sponsored by The Ripped Bodice and PS: you can RSVP here.
Questions or comments? Please email my very tiny team at unrulywellness@gmail.com
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Stay safe and see you next time.
There has been some success and/or decrease in symptoms with US or shockwave therapy to the penis with a Pelvic PT.
Agree with comment from Melissa below- ultrasound therapy can be helpful, usually done by a physical therapist. Sometimes we just set it up and let the patient do the treatment themselves.