National Vulvodynia Association

Vulvodynia is a complex, multi-factorial chronic pain syndrome which is associated with significant distress and interpersonal. Vulvar vestibulitis and dyspareunia are two common, although not well-understood clinical components or sub-types of vulvodynia. Chronic vulvar pain is experienced by, according to recent surveys, about 10-15% of the female population between 18 and 80. Pathophysiologic findings have not been convincing for the role of any specific antibody or etiological mechanism, although several have been proposed including aberrant somatosensory processing in the peripheral or central inflammatory process. The epidemiology and predictors of vulvodynia have similarly not been well- articulated in the literature. One study suggested that the disorder may be largely limited to white, middle-aged women, although sampling and data gathering limitations cloud the assessment of these findings. Thirdly, many centers have begun emphasizing surgical treatments for vulvar vestibulitis, although these approach is rejected by about 1/3 of women at the outset. The vestibulectomy procedure also leads to definite worsening of the condition in about 10% of cases. This grant will propose to examine efficacy, outcomes and cost-effectiveness associated with four non-surgical interventions for vulvodynia. In general, the women’s Health Research Section of RWJMS is committed to offering minimally- invasive services and treatments to a broad diversity of women in the central northeast region. Our previous experience and that of our Co-PI’s make our site uniquely well-prepared to offer a broad range of dissemination and educational experiences, both locally and nationally, in the final years of the grant cycle. We plan to arrange and host an international consensus conference (something we have done twice recently in other areas of relevance), and to disseminate findings obtained from this and similar conferences broadly. We will also disseminate any questionnaires and treatment manuals developed in the context of this grant via website or other appropriate electronic or non-electronic form. We will develop patient education and public information materials, which will also be distributed in the most accessible and least costly form. Our ultimate goal is to share findings from this and related research with the broadest cross-spectrum of women that we can.

Chronic pain problems involving the female reproductive system are major health concerns for all women. Poorly understood, they entail great personal and financial cost. One such condition is vulvodynia, or chronic unexplained vulvar pain, which has a prevalence of 16%. Despite its negative impact on psychosexual and relationship satisfaction, there is little research examining empirically-tested treatments for afflicted couples. The proposed research builds on findings from our work focusing on the impact of relational factors on vulvodynia, and our previous research evaluating the efficacy of group cognitive-behavioral therapy for this problem. This two-centre randomized clinical trial aims to assess the efficacy of a novel, 12-week targeted couple therapy (CBCT) for women with vulvodynia in comparison to one of the most commonly prescribed first-line medical interventions, topical lidocaine. Primary research question: Is there a significant difference between the two treatments on women’s pain during intercourse post-treatment? Based on our previous work and existing literature, we hypothesize that CBCT will yield significantly greater pain reduction post-treatment than lidocaine. Secondary research questions will assess for significant differences between the two treatments post-treatment and at 6-month follow-up on multidimensional aspects of pain using the McGill Pain Questionnaire, women and partners’ sexuality (sexual function and satisfaction), psychological adjustment (anxiety, depression, catastrophizing, self-efficacy, attributions, and quality of life), relationship factors (partner responses and dyadic adjustment), and self-reported improvement and treatment satisfaction. We hypothesize that CBCT will show significantly greater improvements on all outcome measures compared to lidocaine. Results of this study will improve the health and quality of life of patients with vulvodynia by rigorously testing the efficacy of a novel couples treatment.

Our previous work focused on studying pain rather than sexual functioning as the central symptom of dyspareunia and vaginismus. This pain-centered approach was very useful and led us to propose that dyspareunia and vaginismus were better understood as pain disorders rather than as sexual dysfunctions. Our conclusions, however, were limited by the fact that most of the studies were carried out with a particular subtype of dyspareunia (vulvar vestibulitis syndrome/VVS). This proposal extends our research to other potential forms of dyspareunia including “post-menopausal,” “post-partum” and “deep” dyspareunia and also continues previous work on vaginismus and VVS. A multidimensional framework focusing on pain but including, pelvic floor muscle tension, physical factors, and cognitive-affective variables is hypothesized to be necessary to understand these various phenomena.

Chronic genital pain in women is highly prevalent, yet poorly understood. There is a great deal of overlap in the pain characteristics of two common forms of genital pain: vaginismus and provoked vestibulodynia (PVD), leading to great difficulty differentiating between these two conditions. Recent research has suggested, however, that physical and behavioral factors may help discriminate between vaginismus and PVD. My proposed research project will utilize different forms of imaging technology to determine whether genital blood flow (through laser Doppler imaging; LDI) and pelvic floor muscle structure (through structural magnetic resonance imaging; MRI) differentiate between women with vaginismus and PVD. Psychosocial factors will also be assessed. Three groups of twenty-five women will be recruited (based on previously established diagnostic criteria): women with vaginismus, women with PVD, and women who have never had chronic genital pain. Participants will undergo a structured interview, completion of questionnaires, as well as imaging through LDI and MRI technology. Differences between the groups with regards to genital blood flow, pelvic floor muscle tension and psychosocial factors (e.g., avoidance, fear) will be investigated. This research is of paramount importance in the investigation of the etiology of PVD and vaginismus, as it will provide crucial information concerning the mechanisms that underlie the pain experienced by women with these conditions. Additionally, if changes in blood flow are found, the effectiveness of treatments targeting this factor can be empirically tested.

Provoked vestibulodynia (PVD), or pain at the opening of the vagina with any kind of touch, affects approximately 16% of otherwise healthy women. The most common treatment involves medical management with less than half of women improving. Most women seek help from a variety of different providers for years before experiencing any improvement in their pain. Women with PVD commonly experience a decline in their sexual health, relationship satisfaction, and emotional well-being as a result of frequent painful intercourse or attempts at gynaecologic exams. Thus, psychological approaches that address the genital pain, in addition to these other domains of the woman’s life, are very much needed. One previous study found that cognitive behavioral therapy (CBT) administered in groups over 10 sessions significantly reduces genital pain and improves different domains of quality of life. Over the past 10 years, the PI has developed a psychological treatment that integrates skills in mindfulness meditation, cognitive therapy (challenging unhelpful or maladaptive thoughts), and behavioral skills (e.g., muscle relaxation) for women with sexual desire and arousal disorders and found significant improvements on most measures of sexual response and quality of life. We have recently adapted this treatment for women with PVD and have pilot tested it in a small group of 33 women with PVD. In our pilot work, we found that four 90 minute sessions significantly decreased pain and improved measures of sexual health and mood. The goal of this study is to expand the program to 8 sessions, and to compare it to the previously tested CBT (which does not include mindfulness meditation). If found effective, the findings from this study will be used to assist ob/gyns and family doctors who are usually the first point of contact for women seeking treatment for distressing genital pain. We also have future plans to make our treatment available online to reach geographically remote women.

Men and women both experience chronic genital pain, which negatively impacts their daily lives. It also affects their relationships, and sex lives. We already know that men and women experience pain differently, and that how a significant other reacts to our pain can have an impact on how well we cope. The present study will examine the differences in men and women with genital pain, and how it influences their health, relationships, and sex lives. In addition, we will examine whether male and female partners of genital pain patients react differently to their partner’s pain. Understanding this will allow treatments to be tailored more specifically to patients based on their gender. It will also allow the development of couple based treatments to improve the lives of men and women with genital pain.

The central theme guiding our research is the investigation of the pain component of vulvodynia (i.e., chronic vulvar pain) within a multidisciplinary pain perspective. Our pain-centered approach has led to unique studies in the area of vulvodynia, including its treatment; it involves a careful characterization of the pain, an examination of the effects of the pain on functioning, and an investigation of potential physical factors involved in the development and maintenance of vulvodynia. Consistent with the pain perspective, we believe that conditions sharing pain characteristics share similar underlying mechanisms and benefit from similar interventions. Although the two most common forms of vulvodynia (vulvar vestibulitis syndrome [VVS] and generalized vulvodynia [GVD]) involve the experience of burning vulvar pain, they differ in terms of pain presentation, functional interference, and treatment outcome, suggesting that they should be studied separately and treated with different medical interventions. However, VVS and GVD have never been investigated together in a controlled and multidimensional manner; this is necessary in order to provide empirical evidence that they are different and ultimately, to guide treatment options to ensure the health and well-being of women with vulvodynia.

This study focuses on a common form of chronic genital pain, vulvodynia, experienced by women. Vulvodynia is defined as chronic vulvar (external genital) pain that is usually described as burning. It is estimated to affect approximately 16% of women at some point in their lives, with over 90% of sufferers reporting ongoing pain for several years. Despite the fact that vulvodynia affects so many women for so long, this condition is poorly understood and often misdiagnosed or ignored. In addition to the substantial pain that these women experience, the pain exists in a body region that directly and negatively impacts their intimate lives. As such, vulvodynia entails a substantial personal cost to patients and a significant financial cost to society. For example, vulvodynia is associated with hardships in many life domains; in terms of psychological well-being and intimate relationship adjustment, many women report feeling depressed and anxious, and they report being fearful that their relationships will end because of the pain and associated issues. Regarding societal costs, vulvodynia is difficult to diagnose and treat, and many women suffer for long periods of time without relief. One study found that only 60% of affected women sought treatment; of these, 30% consulted three or more physicians to obtain a diagnosis, and the condition remained undiagnosed in 40%. Unfortunately, little is known about the causes of vulvodynia, and treatments are often applied in a haphazard manner, leading to lengthy time periods before any noticeable decrease in pain can be achieved. The purpose of this study is to find out what kind of pain best describes vulvodynia so that treatment plans can be optimized. The information from this study will improve the personal and interpersonal lives of women who suffer from this chronic condition and will streamline their access to appropriate treatment options.

Chronic pain problems involving the female reproductive system are major health concerns in women of childbearing age. As conditions that are poorly understood and often misdiagnosed or ignored, they entail a great personal cost to patients and a significant financial cost to society. One such condition is provoked vestibulodynia (PVD) – an acute, recurrent, vulvo-vaginal pain problem that is triggered primarily through sexual contact. Not only is it highly prevalent, with estimates of 12-15%, but it also results in significant sexual dysfunction, psychological distress and reduced quality of life. However, there is a paucity of research to elucidate PVD etiology. Whereas other chronic pain conditions have benefited from sound research on relationship variables, this important factor has been grossly neglected in PVD – a unique condition where one could say that the spouse ’causes’ the pain. The spouse may unknowingly reinforce the patient’s pain behaviors (e.g., avoiding sexual activity) and/or encourage well behaviors (e.g., communicating about PVD). This research project will examine the causal role of relationship variables on pain, sexual impairment, and depression in women with PVD and their spouses. I expect that (1) higher solicitous spouse responses will increase patient pain and sexual impairment, (2) higher negative spouse responses will increase patient depression, and (3) higher facilitative spouse responses will decrease patient pain and sexual impairment. I expect that these effects will depend on patient expressions of well vs. pain behaviors. One hundred PVD women and their spouses will complete daily diaries for 8 weeks. If sexual activity occurred, then they will answer questions about pain and well behaviors, spouse responses, and sexual impairment. The findings would inform the development of targeted couples interventions and suggest integrating relationship processes into causal models of sexual problems and chronic pain.

Chronic pain problems of the reproductive system are frequently misdiagnosed or ignored, resulting in a great personal and financial cost to women and society. One prevalent (16%) condition is vulvodynia, or chronic unexplained vulvar pain. Vulvodynia negatively affects all aspects of women’s sexuality, and the quality of life and romantic relationships of women and their partners. Despite the interpersonal nature of this condition, studies examining relationship factors are lacking. The current proposal builds on our prior research on the influence of romantic relationships in vulvodynia as well as past studies on the important role of goals in chronic pain. Over 80% of women with vulvodynia continue to have intercourse, possibly because of interpersonal goals such as wanting to promote intimacy (i.e., approach goals) or to avoid a partner’s disappointment (i.e., avoidance goals). The proposed two-centre, two-month daily diary study examines the role of women’s own and their partner’s sexual goals on her pain during intercourse and the psychological and sexual adjustment of both members of the couple. We expect that on days when women or their partners pursue sex for approach goals, women will report lower pain, and women and partners will report better sexual and psychological functioning, whereas on days when women or their partners pursue sex for avoidance goals, women will report greater pain and both will report lower sexual and psychological functioning. We also expect that higher approach goals will lead people to attend more to positive cues during sex, which will lead to less pain and better sexual and psychological functioning, whereas higher avoidance goals will lead people to attend more to negative cues during sex, which will lead to poorer functioning. Results may improve the health and quality of life of women with vulvodynia by suggesting that psychological interventions focus on increasing approach and decreasing avoidance sexual goals.

Chronic pain is an unpleasant experience that is difficult to treat. Accurate classification of pain conditions drives treatment, as similar conditions respond similarly to treatment. The first step of pain classification is assessment, which begins with an extensive pain history. Pain can have elements of nociception and neuropathy, each requiring considerably different treatment approaches. If neuropathic pain is suspected, confirmatory tests are conducted. Standardized techniques and measures should be used to investigate the nature of pain conditions and justify use of certain treatments. Despite the availability of quality assessment tools, many conditions have not been fully explored. One such condition is vulvodynia (i.e., female genital pain). Although research suggests that it is best classified as a chronic pain condition, no systematic study has determined what type of pain it is. The next step is to determine if this condition is neuropathic (resulting from dysfunction of the nervous system) or nociceptive (resulting from factors outside the nervous system). To address this, I am conducting multiple studies examining various subtypes of vulvodynia, and comparing results to women suffering from an established neuropathic pain condition, postherpetic neuralgia (PHN). First, I am conducting an online survey using a series of validated questionnaires to assess neuropathic and nociceptive pain characteristics and functional disturbances. Next, women with PVD and PHN will take part in an in-person sensory testing study including a gynecological assessment by a genital pain specialist. Finally, this information will be combined and presented to a neuropathic pain specialist for formal diagnosis. The results of this study will change how vulvodynia is understood, researched, and treated. It may also lead to the development of a diagnostic tool for physicians that will improve diagnosis and treatment outcomes.

Provoked vestibulodynia (PVD) is a chronic, recurrent pain condition characterized by burning, stinging or sharp pain at the vaginal opening. PVD affects between 12-16% of adult women, and the cause remains unknown. PVD often goes undiagnosed for years, and the associated health care burden is thought to range from $31 to $72 billion annually in the United States alone. A sample of Canadian young women aged 12-19 found that genital pain affected a staggering 20%, many of whom may later be diagnosed with PVD. There is a need to rigorously identify the areas of distress related to genital pain in younger women and to understand the impact of such pain on young women’s quality of life. A survey of young women will be undertaken, between the ages of 12-19 years with and without symptoms of PVD pain to understand the impact of genital pain on psychological and sexual well-being. Participants will be recruited from a variety of sources such as schools, sexual health clinics, and websites. Questionnaires will include measures of genital pain history, psychological distress, attention to pain, self-esteem, sexual attitudes and, sexual and relationship function and satisfaction. Genital pain during adolescence and early sexual experiences may shape lifelong attitudes towards sex, relationships, and the self. A better understanding of the impact and origins of this pain should lead to more effective interventions for PVD and its associated distress in this population. Interventions specifically for young women with genital pain may also help reduce associated health care costs.

Unexplained chronic vulvar pain is a medical issue that has been neglected by the scientific community. Consequently, consensus on a classification system with validated terminology and diagnostic criteria does not exist. Vulvodynia is defined as vulvar burning, rawness irritation, stinging, soreness, and / or pain occurring in the absence of an underlying, recognizable disease (IISSVD, 1999). Women with unexplained chronic vulvar pain are frequently given one of two diagnostic labels: vulvar vestibulitis syndrome (VVS) or dysesthetic vulvodynia (DV), which is based on patterns of signs and symptoms. The primary objective of this study was to further evaluate the DV / VVS dichotomy, by comprehensively characterizing the pain and symptom profiles of women with unexplained chronic vulvar pain.
The research team recruited twenty-two women with unexplained chronic vulvar pain and 20 women completed the study. Twice, each woman underwent a comprehensive, standard evaluation with a multidimensional inventory of tests developed by the investigators. The women were assessed by one of the two gynecologists during the first visit and then by the alternate gynecologist during the second visit.
Components of the inventory of tests were then used to characterize the women’s chronic vulvar pain according to five dimensions that are commonly used to differentiate between VVS and DV. These dimensions included: localized vs. diffuse pain; intermittent vs. continuous pain; evoked vs. spontaneous pain; degree of erythema; and vestibular pain threshold.
Moderate test-retest reliability of inventory items and moderate correspondence between the gynecologists’ examinations were observed for most of the variables. However the majority of women in this sample did not fit within one of the two diagnostic groups based on the five dimensions that were assessed. The findings from this study suggest that there is considerable overlap in the characteristics of pain experienced by women with unexplained chronic vulvar pain. Further research is needed using standardized, validated assessment procedure to inform the development of a classification system that improves pain management.