The British Dupuytren’s Society, a charity that works to help men with Dupuytren’s and Peyronie’s disease, among others, surveyed 185 men who had all been diagnosed with Peyronie’s disease (a disease that causes the penis to bend) to reveal how it affects mental, emotional and sexual wellbeing.
Find out about Peyronie's disease causes, symptoms and treatment options
Impact of diagnosis
The results of the Peyronie's disease survey were shocking – 60% of the men admitted they suffered with depression after their diagnosis. This may not come as such a surprise to anyone who has ever suffered with a genital disorder and felt the awkwardness of having to see a doctor or asking friends about it.
Men, in general, are notorious for not wanting to talk about their feelings and so this, combined with the fact that the problem relates to their genitals, means feelings often get buried and that can be a major problem. In fact, the survey found that one in ten men with Peyronie’s have told no one about their condition, not even a doctor.
“Talking about the health of your genitals should be as acceptable as talking about your digestive health, for example, but unfortunately it’s not,” says sex therapist Dr Ian Kerner, of goodinbed.com. “Men are commonly more reluctant than women to talk about sexual problems and health issues too, which makes Peyronie’s a particularly difficult topic for them to address openly. Raising awareness of the disease is important so that we can become more accepting of being open about sexual health – to begin with at least when talking to medical professionals! – because that’s the only way we can help prevent and treat these disorders, and provide effective support to patients.”
Exacerbating this feeling is the fact that many men have sought help but found no solution was offered.
Of the surveyed men, 45% felt their doctor wasn’t helpful and 40% were offered no treatment at all. Clearly, doctors also need to be updated on possible treatments and solutions for the disease. “It’s time we started talking about this condition and the effect it is having on men,” says Birgir Gislason, trustee of the British Dupuytren’s Society. “We were shocked to discover the true impact this is having on men and feel that sufferers need to be offered a range of treatments, as well as psychological support, during what can be a very difficult time.’
What to do if you think you have Peyronie's disease
If you suspect you might have Peyronie’s disease, book an appointment with your GP if you feel most comfortable with them, but you could also consider booking an appointment directly with a urologist, who will have more knowledge and experience regarding penile health. While it might feel awkward for you, doing this could be key to being given access to treatment.
“Go and see your GP and describe your symptoms and if you feel you are being ignored, ask to be referred to a urologist,” says Tim, who has Peyronie’s disease. “I did that, but the urologist couldn't do anything on the NHS, so referred me to a Peyronie’s specialist. He was amazing and took the time to explain my options.”
If you’ve been diagnosed with Peyronie’s and would like support, log on to www.dupuytrens-society.org.uk which is where you’ll find useful information and support. You can also join forums such as Peyronie's Forum to talk to other people going through similar experiences.
Impact on relationships
The survey also revealed that one in four men found it had a negative impact on their relationship with their partner. “At first I felt 'less of a man', slightly embarrassed at my shape,” says Tim. “Sex was painful at first during the acute phase, which meant we would go without for three or four weeks at a time. Once in the chronic phase, there was no pain.” Tim was lucky, he talked to his partner and she was very understanding and sympathetic, he says. But the toll on a relationship has been found to be so great for many men with Peyronie’s that one in ten couples separate.
“As with any sexual health problem, Peyronie’s disease is one that both partners need to accept and address,” says Kerner. “That means working together to find a way around the problem. Opening up about your insecurities is key if you want your partner to understand how you feel and to help you. And together you can find a way to make sex work.”
Be aware, too, that you are potentially not the only one feeling responsible about how sex isn't as it used to be between you. “Some partners may feel that the disease might be their fault, as one possible cause of the disease is trauma to the penis during intercourse,” says Kerner. “So both sides are going through emotional processes that need to be addressed and dealt with if you’re to come out of this with a healthy relationship.”
What to do to improve your relationship
Listen to your partner and find out how they feel. You will likely be surprised. “Making assumptions about how your partner feels is a classic way to make the situation worse,” says Kerner. “Your partner gets frustrated and annoyed because you don’t seem to care what he or she thinks and feels, and you most likely assume far more negative thoughts than the reality. So talk and listen!”
Also, find time for non-sexual intimacy. “I wouldn’t suggest that cuddling can replace sex, but staying physically connected while you work this through is key to making it easier to continue on this path together, as a couple. So give each other massages, hold hands, kiss, snuggle – it’ll keep you feeling bonded and happier too.”
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Sex with Peyronie's disease
With 24% of men diagnosed with Peyronie’s revealing that they are no longer sexually active, as a result of the diagnosis, it’s clear that a diagnosis can have a lasting and extremely damaging impact on a man’s sex life.
How to improve sex with Peyronie's disease
Reducing pain: If you find your erections painful and sex becomes uncomfortable, you might find that an anti-inflammatory painkiller helps. Ibuprofen, for example. Be aware, though, that this pain is usually only associated with the onset of Peyronie’s, so it should dissipate over time.
Finding the right angle: Try changing the way you usually have sex (the angle of penetration and overall position). You might find that having sex in a seated position makes it easier (you in a chair and your partner on your lap); or you might find the right angle for you if your partner goes on all fours on the bed, positioning their right knee further towards his/her hands if your penis bends to the left, for example, as this will open up the angle of penetration to you. “My partner and I have had to change positions now during sex,” says Tim. “It works best with her on top as the angle is better. (My penis is bent up at about 45 degrees when erect.) Experimentation is the key. One good thing to come out of this is that due to my curvature, I quite often stimulate her G spot, so don’t give up!”
Difficulty maintaining an erection: While many men with Peyronie’s can still get erections and ejaculate, some cannot. If that’s you, make your situation a positive by changing the way you have sex. “There are so many ways to have sex without an erection,” says Kerner. “And in fact, once you start exploring and learning about the other ways to do it with your hands, mouth, sex toys and so on, you and your partner may discover a whole new wonderful world of sex.”
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