Providing information for women who suffer from vulval pain, and their partners

Current research

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% 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%⁴ to 27.9%.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 time to do 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 minimized, 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

Please note that all links to source texts for references will open in a new window.

1. Thomas T C, in A Practical Treatise on the Diseases of Women, Henry C Lea's Son & Co, Philadelphia, 1880, pp 145-147: also Skene, A J C, in A Treatise on the Diseases of Women, D Appleton & Co, New York, 1888, pp 93-94

2. McKay M, in 'Burning vulva syndrome: report of ISSVD task force', in Journal of Reproductive Medicine, no 29, 1984, page 457

3. Harlow B L and Stewart E G in 'A Population-Based Assessment of Chronic Unexplained Vulvar Pain: Have we underestimated the Prevalence of Vulvodynia?', in the Journal of the American Medical Women's Association, vol 58, no 2, 2003, pp 82-88

4. Arnold L D, Bachmann G A, Rosen R et al in 'Assessment of vulvodynia symptoms in a sample of US women: a prevalence survey with a nested case control study', in American Journal of Obstetrics & Gynecology, vol 196, no 2, 2007, pp 128.e1-128.e6

5. Reed B, Crawford S, Couper M, Cave C and Haefner H, in 'Pain at the vulvar vestibule: a web-based survey', in the Journal of Lower Genital Tract Disease, vol 8, no 1, 2004, pp 48-57

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 the section below 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 below 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 country.

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 these 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!

Important Disclaimer: Whilst the VPS is keen to encourage women suffering with vulvodynia to actively participate in research whenever possible, we would advise that any such participation is at your own risk. In particular, where the research is of a practical or physical nature such as the trialling of drugs or other physical therapies, we strongly urge you to consult your GP or other medical practitioner before signing up, in order to ensure your own safety and compatibility with your existing treatment plan. Queries or concerns about the studies themselves should be raised with the institution carrying out the research.

Medical professionals

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 here, please contact the VPS, and let us know! Although this section of our website is in its infancy, we envisage it ultimately serving 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.

Vulvodynia research requiring participants

The studies listed below are actively looking for English-speaking participants from the UK and, in the case of the international studies, other countries as well.  For details and updates on studies previously listed in this section which no longer appear here as they are now closed to new participants, please see Older studies.

Searchable online databases of studies and clinical trials

If none of the studies listed here are suitable or of interest, you may be able to find others by searching the databases contained at NHS Choices and Current Controlled Trials (both of these open in new windows). NHS Choices also provides a great deal of very useful information about the research process itself, including safeguards for participants, plus real life stories from people who have participated in research. 

NB    As of December 2012, we are in the process of reviewing and updating this section, and it is possible that some of the studies mentioned below may now be closed to new participants. If you are interested in participating in any of the studies, we would advise you to contact the study organisers, or, if you prefer, you can email the VPS at This e-mail address is being protected from spambots. You need JavaScript enabled to view it. , stating the title of the study that interests you and we can advise as to its status. Alternatively, if you visit the National Vulvodynia Association's website at www.nva.org/participate.html, they hold an international list of studies, many of which are online and open to participants from all over the world. Thank you for your patience as we review these studies: please do visit this page again shortly as we are hoping to have some new UK-based studies here very soon.