Men with Peyronie’s disease not receiving proper treatment and support

New research into Peyronie’s disease has revealed the devastating mental toll on those affected, and their struggle to receive proper treatment and support.

A new survey of 185 men with Peyronie’s disease released by charity the British Dupuytren’s Society to mark the start of Men’s Health Week reveals that 45% of men with Peyronie’s disease felt their doctor wasn’t helpful, and over half (57%) said they didn’t think their doctor knew enough about the treatments available. 15% were told nothing could be done to help and 40% were not offered any treatment at all.

Peyronie’s disease is a condition that involves the development of collagen plaque, or scar tissue, on the shaft of the penis. The scar tissue, known as a Peyronie’s plaque, may harden and reduce flexibility, which may cause bending or arching of the penis during erection making sex difficult or impossible.

The research also shows the extent of how the illness affects mental health. A staggering 60% of men admit they have suffered depression following their diagnosis, with a quarter saying it has negatively affected their relationship – 1 in 10 relationships have broken down completely. A quarter of men with Peyronie’s disease (24%) are no longer sexually active.

Birgir Gislason, trustee of the British Dupuytren’s Society said: ‘It’s time we started talking about this condition and the effect it is having on men. At present men with Peyronie’s disease are isolated and depressed, with many offered no solutions from their doctor despite the fact that there are treatments out there. 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.’

Dr Noelle Robertson, Consultant Clinical Psychologist said: “Peyronie’s disease is a condition that can be both painful and distressing, and may adversely affect quality of life for men and their partners. In addition to its negative impact on intimacy, sexual activity and satisfaction, psychologically it can significantly affect mood, self-esteem and masculinity. Evidence suggests that men may be reluctant to disclose their distress and clinicians may not realise the considerable psychological burden experienced by their patients. Any initiative to increase awareness of the condition and its impact is likely to be welcomed by patients and professionals alike.”

Mr David Ralph, Consultant Urologist said: ‘The medical profession needs to improve the care it gives to those with Peyronie’s disease. Too many doctors are not educated about the disease and the treatments that can be used. We have a variety of options available to us from oral drugs, to injections and as a last resort, surgery. I would like to see each patient be referred to an expert in the field and try a range of treatment options.’

The British Dupuytren’s Society represents a number of related conditions including Dupuytren’s disease, Ledderhose disease, frozen shoulder and Peyronie’s disease. The charity is fundraising to provide support for men with Peyronie’s disease and raise awareness. For more information visit http://dupuytrens-society.org.uk/information/peyronies-disease/

The campaign is supported by the Primary Care Urology Society and the Sexual Advice Association.