Vulvodynia research: why it's needed and how you can help

Background

Why more research is needed

How you can help

Background

'So commonly is it [hyperaesthesia of the vulva] met with at least, that it becomes a matter of surprise that it has not been more generally and fully described.'

(T C Thomas, describing 'hyperaesthesia of the vulva' in A Practical Treatise on the Diseases of Women, Henry C Lea's Son & Co, Philadelphia, 1880, page 145)

Although the condition we now call vulvodynia was first mentioned in medical textbooks well over a century ago,1 it seems to have then disappeared from medical texts for many decades, only resurfacing in 1975, when the International Society for the Study of Vulvovaginal Disease (ISSVD) identified a condition they called 'burning vulva syndrome' at their World Congress. The term 'vulvodynia' did not itself appear formally until 1983, when it referred to 'chronic vulvar discomfort, especially that characterised by the patient's complaint of burning and sometimes stinging, irritation or rawness'.2 With an accepted, recognised medical term in use for the condition, further refinements of the terminology and debate on the condition itself were then possible, but it has only really been during the past decade that a body of research into vulvodynia has started to come together.

Why more research is needed

A recent US study revealed that around 16 per cent of American women between the ages of 18 and 64 reported suffering from chronic vulval pain (i.e. pain lasting for three months or longer) during the course of their lives.3 Other studies report incidences of vulvodynia ranging from, for example, 9.9 per cent 4 to 27.9 per cent.5

Any woman who is diagnosed with vulvodynia is faced with learning to cope with a condition which in addition to leaving her with chronic genital pain and discomfort, can seriously damage sexual and emotional relations with a partner. It may disrupt or even prevent routine activities such as sitting for any length of time, or engaging in sports such as swimming, cycling or horseriding, and it may even cause problems with finding comfortable clothing. Vulvodynia is a condition which can have a major impact on a woman's daily life, and the host of secondary troubles it can trail in its wake are discussed elsewhere on this website under Vulval conditions.

The psychological distress caused by these physical limitations is greatly exacerbated by the lack of any known cure for the condition, together with the general lack of firm knowledge about its possible duration, most likely cause, most useful treatment etc. A newly-diagnosed sufferer can access long lists of potential causes and treatments of vulvodynia, if she has internet access and takes the time to do the research, but she may well have a long journey ahead of her to find a way of successfully managing the pain. As part of this journey she may have to approach a number of specialists and consultants in diverse medical disciplines (e.g. gynaecology, dermatology, physiotherapy, dietetics, psychology, rheumatology, osteopathy, acupuncture, chiropractic). If, in an attempt to speed things up, the patient undertakes this journey privately, her costs may be considerable. If, on the other hand, like the majority of patients in the UK, she pursues treatment on the NHS, she may spend years waiting for secondary referrals to consultant after consultant. As the months and years roll by, there is an increasing risk that the patterns of her pain may become established, to the point of becoming permanent. Finally, at the end of her journey, there is no guarantee whatsoever that any of the treatments pursued will have any effect on the pain and discomfort, nor even, in the event of a cure or remission, that the vulvodynia will not return.

A great deal of time and money could be saved, and stress minimised, if both patients and doctors could have a clearer indication of the most likely duration of the vulvodynia, the most probable cause and most effective treatment, and also the general prognosis for the long term.

Put bluntly, we need more research.

References and links

How you can help

Patients

The VPS wants to encourage and facilitate all forms of research into the causes, nature and treatment of vulvodynia. Most research needs the participation of patients, so our Current research requiring participants page gives a list of all studies known to us, which currently need participants and which are open to women in the UK. All the studies listed on this page welcome participation from vulvodynia sufferers anywhere in the world, provided they can speak English (or other languages where indicated) and can meet the stated requirements of the study. The projects are listed by date of first posting, with the most recent at the top.

If you can spare a little time, and would like your personal experiences as a patient with vulvodynia to be confidentially recorded in order to help improve future treatment of this difficult condition, please consider taking part in one or more of the studies. Participating in research can be psychologically therapeutic, as it provides an opportunity to use the vulvodynia as a tool to help all sufferers, including yourself. No special skills or previous experience with research are usually necessary. Your input is needed!

Medical professionals and researchers

If you are aware of any current research projects or clinical studies on vulval pain which are open to sufferers in the UK, and are not listed on the Current research requiring participants page, please contact the VPS, and let us know! We hope ultimately that the page will serve as a 'virtual noticeboard' and information point for future research in the UK and beyond, bringing together researchers and study participants in order to improve and accelerate the research process.