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One in five women with a vulval health condition contemplate self-harm or suicide

One in five patients with a condition affecting more than 300,000 women in the UK have considered suicide or self-harm, according to a survey of women with vulval health conditions released today.

Vulval health conditions are common in the UK, with a conservative estimate suggesting that 1 in every 100 women in the UK suffers from Lichen Sclerosus. This is just one of a range of vulval disorders and affects 63 per cent of the respondents to this survey.

The survey conducted by the British Association of Dermatologists (BAD), together with the Association of Lichen Sclerosis and Vulval Health, showed the extent of the social, professional and emotional damage that vulval health conditions can have on lives.

44 per cent of women with a vulval condition surveyed stated that it was difficult to access medical treatment for their condition. Reasons for the difficulties experienced included misdiagnoses, waiting times, not knowing who to speak to and embarrassment at seeking treatment.

Further to this, 89 per cent of those surveyed said that their condition had affected their emotional and mental wellbeing, 42 per cent said that it had affected their social life, 79 per cent said that it had affected personal relationships, and 39 per cent said that it had affected their work life.

The severity of this impact should not be underestimated. 22 per cent had suicidal thoughts or thoughts of self-harm. 17 per cent felt that their condition had been responsible for the break-up of a relationship, partnership, or marriage. 63 per cent felt that their condition had prevented, or made difficult, romantic or sexual relationships. One respondent said her condition made her feel “less of a woman”, another that she felt like “a freak”.

Many of the respondents said their condition made everyday tasks difficult, unpleasant, or impossible, including:

• Walking: 38 per cent
• Urinating: 50 per cent
• Wearing underwear or trousers: 60 per cent
• Engaging in sexual activities: 84 per cent
• Sleeping: 36 per cent

Dr Karen Gibbon of the British Association of Dermatologists said, “Embarrassment, emotional trauma, and physical pain are common themes amongst women with vulval health conditions. It’s important that women are able to talk about vulval conditions without fear of stigma. Greater awareness and education around vulval health will not only help mitigate emotional distress but will also help women get the treatment they need sooner.”

Dr Nevianna Tomson, Consultant Dermatologist said, “Vulval health conditions can be difficult for people to talk about, but it’s important that we overcome that discomfort. It shouldn’t be necessary for women across the country to suffer in silence. For many of these conditions there is no cure, but there are treatments that can help and there is a heavy psychological burden which we can lessen.

“Women should not be trapped inside their own heads thinking that they are less of friend, partner, employee or woman because of a condition. Being able to talk openly about health is the first step to improving the lives of patients and helping them get access to treatment.”

Fabia Brackenbury of the Association of Lichen Sclerosis and Vulval Health said, “I have been living with lichen sclerosus for over 20 years. It was a contributing factor to the loss of my 30 year marriage. The challenges never end. You go into old age with this condition. A woman deserves an Indian Summer, not a Winter of Discontent.

“A much higher profile needs to be established for vulval disease, not only amongst medical professionals but also researchers and the media. My own campaign for awareness started well with media interest but over the years has been dropped in favour of other health issues.

“Those who suffer, long to enjoy the high profile that is seen in other conditions, and none more so than those with vulval cancer. So many women have told me that at least if they had breast cancer, they could talk to people about it.

“If awareness equality was possible, women would feel more able to come forward and seek help. Awareness and education for everyone is essential if we are to improve the lives of the small girls who are diagnosed as young as two years old with lichen sclerosus and who will live a life sentence of shame, despair and uncertainty.

“We live in an unequal world where some people's health issues are more important than others and this is the root of much suffering for those who struggle for recognition.”

-Ends-
Notes to editors:
For more information, please email: john.major@bad.org.uk

Interview opportunities available with Dr Karen Gibbon, Dr Nevianna Tomson and Fabia Brackenbury. For more information contact john.major@bad.org.uk

Vulval health conditions include, but are not limited to, Lichen Sclerosus, Vulval Cancer, Vulvodynia, Lichen Planus, Ulcers, Cysts and Lichen Simplex. None of these are sexually transmitted diseases.

The British Association of Dermatologists is the central association of practising UK dermatologists. Our aim is to continually improve the treatment and understanding of skin disease.

The British Association of Dermatologists’ Vulval Health Survey 2015 was completed by 325 women suffering with vulval health conditions. For details of the full survey contact: John.Major@bad.org.uk

Dr Karen Gibbon is a consultant dermatologist who works both in the NHS for Barts Health NHS Trust and privately in Essex. She runs specialist vulval clinics for girls and women of all ages. She is also a member of the clinical services unit at the BAD.

Dr Nevianna Tomson is a consultant dermatologist who works both in the NHS for West Suffolk Hospital and privately. At NHS West Suffolk she is the lead clinician for vulval disease. More about Nevianna can be found here: www.suffolkskin.co.uk

Fabia Brackenbury is the founder of the Association for Lichen Sclerosus and Vulval Health. She has been living with Lichen Sclerosus since 1994.

Other patient support groups for vulval health include the Vulval Pain Society and the British Society for the Study of Vulval Disease (BSSVD)
 

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