Research
Current Research into VulvodyniaBackground
'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 Practical Treatise on the Diseases of Women, Henry C Lea's Son & Co, Philadelphia, 1880, pp 145-147.)
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 refrerred 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 9.9% to 27.9%. [4, 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.
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.
[1] Thomas T C, in Practical Treatise on the Diseases of Women, Henry C Lea's Son & Co, Philadelphia, 1880, pp 145-147: also Skene, A J C, in Treatise on the Diseases of Women, D Appleton & Co, New York, 1888, pp93-94[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, pp82-88
[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, no2, 2007, pp128.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 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 and 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 vulvodynia which are open to sufferers in the UK, and are not listed here, the VPS wants to hear from you. 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
UNITED KINGDOM
The VPS is unaware of any research into vulvodynia currently taking place in the UK.
INTERNATIONAL
The following studies appear on this website with the kind permission of the National Vulvodynia Association from whose website they are reproduced and on which they can also be found.
Canada
Universitè de Montréal (Montreal, Quebec, Canada)
Subject: The impact of relationship variables on vulvo-vaginal pain and psychosexual functioning in afflicted women and their partners
Contact: Myléne Desrosiers tel (+1) 514-343-6111 ext. 47688 or mylene.desrosiers@umontreal.ca
Requirements: Universitè de Montréal and the Centre Hospitalier de l'Universitè de Montréal - Notre-Dame and Saint-Luc Pavilions are looking for women suffering from provoked vulvodynia (vestibulodynia) who are 18 or older and co-habiting or married. English and French speaking participants are welcome. Women and their partners will fill out questionnaires at home (about 60 minutes) and will send them back by mail to the research team. All the information collected will be dealt with confidentially and with anonymity. A thirty-minute, telephone consultation with a sex therapist specialized in the treatment of vestibulodynia, member of the research team, will be offered to participating couples as a form of compensation. The couples will thus be able to acquire information about vulvo-vaginal pain.
This study is funded by the Canadian Institutes of Health Research (CIHR)
University of Ottawa (Ottawa, Ontario, Canada)
Subject: An Internet Survey on the Impact of Vulvodynia in Lesbian, Bisexual and other Sexual Minority Women
Contact: Heather Andruff, BA, PhD Candidate. Tel (+1) 613 562 5800, ext 4449. email heather.andruff@uottawa.ca or Elke Reissing, phD Tel (+1) 613 562 5800, ext 4944 email elke.resiing@uottawa.ca
Requirements: The University of Ottawa is seeking lesbian, bisexual and other sexual minority women who are currently experiencing vulvovaginal pain, genital pain, and/or pain during vaginal penetration (with fingers, sex toys, penis, tampons etc) to participate in an online research study. In order to participate, women should be 18 years of age or older.
Eligible participants will complete an anonymous and confidential online survey that includes questions on the current experience of vulvovaginal pain, gynaecological history including a consultation history, sexual functioning, relationship satisfaction and demographic information. This survey should take approximately 30 minutes to complete.
This research is supported by the Social Sciences and Humanities Research Council of Canada and approved by the University of Ottawa Research Ethics Board.
Women who are interested in participating are asked to visit the University of Ottawa's Human Sexuality website for more information and to complete the survey.
Queen's University (Kingston, Ontario, Canada)
Subject: Study on pain, relationship, sexual and psychological function among women with vulvodynia.
Contact: Sexual Health Research Laboratory, Department of Psychology, Queen's University (Kingston, Ontario, Canada); Tel (+1) 613-533-3276 or shrl@queensu.ca
Requirements: Queen's University is seeking women over the age of 18 years who experience chronic genital pain or pain during sexual intercourse to participate in an online research study. Partners of women are also encouraged to participate in this study. However, women do not need to be involved in a current relationship to participate.
Potential participants will complete a brief telephone screening interview (approximately 20 minutes) to ensure eligibility for the study. All calls are treated with strict confidentiality.
Subsequently, eligible participants will complete an anonymous online survey hat includes questions pertaining to pain, psychological health, body image, relationship adjustment and sexual function. This survey should take approximately 90 minutes for women with pain to complete, and 60 minutes for partners. All information collected from this study will be kept confidential and in a secure, password-protected database.
Women are paid CAN $10.00 for their participation upon completion of the survey. Couples are also wanted for this study! As an added bonus, women whose partners also complete the study will be paid CAN $15.00 (instead of CAN $10.00) and their partners will also receive CAN $15.00 for completing the study.
If you have any queries or concerns, please contact Caroline Pukall, PhD. email caroline.pukall@queensu.ca Tel (+1) 613-533-3200 or Kelly Smith, MA, PhD Candidate 2kbs@queensu.ca Tel (+1) 613-533-3276, or Joan Stevenson, PhD, Chair of the General Ethics Research Board, Queen's University stevensj@queensu.ca Tel (+1( 613-533-6288.
United States of America
University of California (Los Angeles, USA)
Subject: PROCAIM is a multi-site, web-based research project to evaluate complementary, alternative and integrative medical (CAIM) therapies, and to help us understand the role of stress in these conditions with overlapping symptoms. Participants register online and complete a series of questionnaires about current symptoms, treatments, current life events, stress and coping, mood and early childhood experiences. This is a year-long research project. The initial online session is expected to take 30-45 minutes. Six subsequent sessions may take 15-30 minutes.
Contact: Log on to their website and register as a new user. Read the consent form and if you want to participate, ‘sign' the form by entering or confirming your email address. Begin to answer the first in a series of questionnaires. The system will send you email reminders at the time of each scheduled follow-up of a year. Or write to Dr Ackerman, Deborah.Ackerman@ucla.edu
Requirements: You must have access to a computer and an email account, be able to read English, and have a chronic and recurring medical condition such as chronic pelvic pain, vulvodynia, IBS, interstitial cystitis, chronic fatigue syndrome, and others. The research study involves answering a series of computerized questionnaires 7 times over a one-year period.
This information was correct on 7 April 2009