A patient in my consulting room shifts uneasily in his seat, his face reddening as he avoids eye contact and stares at the floor.
When he eventually begins to talk, his voice is barely above a whisper. He tells me he has come in because something is wrong with his penis.
As a consultant urologist at the Cleveland Clinic, I have heard many conversations that begin this way. Feelings of shame, embarrassment and long periods of silence are almost always part of the experience.
But as this particular patient, a man in his late 40s, starts to explain what has been happening, I recognize the condition almost immediately.
He says that several years earlier, he noticed his penis beginning to change shape, especially during erections.
At first the difference was minor — just a slight upward curve and a tilt to the left. Then, over time, and eventually with alarming speed, the change became far more severe.
‘My penis looks grotesque,’ the father-of-two told me. ‘From the midpoint onward, it bends to the left at around a 45-degree angle.’
Astonishingly, he said his wife had never mentioned it – and he had felt unable to bring it up himself.
The distressing condition, characterised by an abnormal curvature of the penis, is caused by a build-up of fibrous scar tissue – known as plaques – within the shaft
‘But it is affecting our sex life,’ he admitted. ‘I have to angle myself in bed just to compensate for the curve.’
At this point, I should say that, while alarming, sadly, John’s experience is far from rare.
He is, as I explained to him, suffering from Peyronie’s disease – and it’s one of the most common reasons men come to see me.
The distressing condition, characterized by an abnormal curvature of the penis, is caused by a build-up of fibrous scar tissue – known as plaques – within the shaft.
Over time, this can lead not only to bending and distortion of the penis while erect, pain and difficulty with sex, but can lead to permanent shortening too.
Importantly, Peyronie’s is thought to affect as many as one in ten men. Yet despite its prevalence, it remains strikingly underdiagnosed.
Research by the National Institutes of Health suggests that as few as one in 100 men with the condition ever receive a formal diagnosis – with many, no doubt, simply too embarrassed to seek help.
Most suffer in silence, perhaps hoping the curvature will fix itself. Others may not even realize they have a problem, until it becomes extreme.
Actor David Harbour, above, plays Floyd Smernitch, a character who suffers from Peyronie’s disease in HBO series DTF St Louis
I’ve had patients who didn’t come in until things had deteriorated so badly that it cost them their relationship.
But the real tragedy is that Peyronie’s is treatable, especially when caught early.
And while we may not be able to return things completely to normal, we can dramatically improve both the shape and function of the penis – and prevent the condition from getting worse.
So, what exactly is Peyronie’s disease – and what can be done about it?
The penis contains two sponge-like cylinders of tissue, known as the corpora cavernosa, which fill with blood to produce an erection.
In most cases, the condition is triggered by tiny injuries to the penis – often during sex – that a man may not even notice at the time.
In a healthy healing process, the tissue repairs itself smoothly. But in Peyronie’s disease, the body lays down excess scar tissue instead – creating hard plaques.
Exactly why this happens to some men and not others isn’t fully understood. But experts believe it is linked to differences in how the body heals, with factors such as age, genetics, diabetes and smoking all thought to play a role.
As fibrous plaques do not stretch, when the penis becomes erect, the affected area cannot expand in the same way as the surrounding tissue – causing it to bend or curve abnormally.
In some men, multiple plaques form, meaning the penis may curve in more than one direction or take on a more complex shape. Others may notice a loss of length or narrowing, as the scar tissue restricts normal expansion.
Pain during erections is also common, particularly in the earlier stages.
Most of the men who come to see me are in their 40s and 50s. But I also see younger men – even in their 20s and 30s – as well as older men.
It’s important to stress that very few men have perfectly straight erections, and in many cases a slight curve is completely normal. Peyronie’s disease is only treated when it is causing distress, pain or difficulty with sex.
I’ve seen men with quite pronounced curvature – even angles exceeding 90 degrees – who are not troubled by it and don’t require treatment. Equally, others with relatively mild changes can be deeply affected, particularly if it impacts their confidence or relationships.
If your Peyronie’s disease has just started and you decide to do nothing about it, it could get worse. But if it’s been unchanged for over six months, then it won’t change again – except in rare cases.
Intercourse raises the risk of more micro-tears or trauma to the penis, which could cause further plaques. As the scar tissue tightens and restricts normal expansion, the overall length can be reduced – in some cases permanently.
Many men, embarrassed by the condition, end up hunting out ‘treatments’ online.
I have heard of hundreds of different products that sometimes cost men thousands. But the truth is that none of them work.
One of the favorites promoted online is the supplement Vitamin E. There are claims it reduces inflammation, helping to stop plaque build-up, but studies have returned no evidence that it works.
In other cases, I have heard of men attaching weights to the ends of their penises to try to stretch them out. This doesn’t work.
How we treat your Peyronie’s disease depends on what phase you are at.
Urologist Dr Petar Bajic is the Medical Director for Urology at the Cleveland Clinic and Director of Men’s Health at the Glickman Urological Institute in Cleveland, Ohio
The disease has two phases. The active phase, in the first 12 to 18 months and when penile curvature is still increasing, and the chronic or stable phase, when the penis has had the same angle for three months or more.
For those in the active phase, I would start them on a regimen that helps to stabilize their condition and prevent it from worsening.
Initially, they would take a daily low dose of the erectile dysfunction medication tadalafil. It works by relaxing blood vessels in the penis and we believe this helps to slow the disease progression and manage pain.
I would also prescribe them traction therapy for an hour a day. This involves wearing a device that gently stretches the penis. Over time, that controlled tension encourages the scar tissue to remodel and become less tight – helping to reduce curvature and limit further shortening.
For those in the stable phase, we can offer injections and traction therapy or surgery.
The injections contain an enzyme called collagenase which breaks down plaques.
Typically, we’ll carry out eight injections in total, spaced out over four appointments. At the same time, men carry out daily traction therapy.
Many of my patients see improvements of 60 percent or more.
There are three main surgical options for Peyronie’s disease. One involves inserting a penile implant, typically used for men who also have significant erectile dysfunction.
The other two procedures aim to straighten the penis by altering its structure – either by shortening the longer side to counteract the bend, or by lengthening the scarred side using grafts.
While the surgery tends to lead to a straighter penis, those who used the injection option are actually more satisfied with the results.
Injections are less invasive and carry fewer risks, allowing men to avoid potential complications such as further shortening, loss of sensation or erectile dysfunction, which can occur with surgery.
Recovery is also quicker, and the treatment focuses on gradual improvement rather than drastic change – which many patients find easier to accept.
Virtually all health insurance plans cover treatments for Peyronie’s disease. Both Medicare and Medicaid cover it too.
My advice to men who think they might have this problem is, please don’t feel ashamed.
This is something that many, many men out there are dealing with, and it’s important to seek help. Be willing to start that conversation about it with your partner or physician.
The patient I mentioned before was treated using two rounds of collagenase injections and the traction therapy.
It helped to vastly improve the angle of his penis. He says that it has also improved his sex life.
He hasn’t told his wife about the treatment yet, and she hasn’t said anything about the results, but he is thrilled to have found a solution.
‘I don’t know what I would have done without this,’ he told me.
