In this study, Australian women with vulvodynia reported seeing a variety of different types of healthcare professionals, as well as seeing often numerous different healthcare professionals within the same healthcare field. Women were offered a variety of treatments by their healthcare professionals, with the most commonly provided being PFM down-training, topical medication, oral medication, and vulvodynia information.
Our respondents reported a prolonged delay between the time their symptoms appeared and the time they received a diagnosis. The mean diagnostic delay of 5.8 ± 6.5 years is greater than what was reported in a population study of 85 women with vulvodynia who lived in the United States, which found 63.5% of women experienced a diagnostic delay of less than three years.12 Respondents in the current study also reported their pain impacting multiple areas of their life, including tampon use, sexual intimacy, mood, and the ability to wear certain tightfitting clothes or underwear. The diagnostic delay and widespread impact of pain found in the present study is concerning, as women are living for unnecessarily prolonged periods with their symptoms. Although the diagnostic delay may be due to the time-consuming assessment procedures required in definitively diagnosing vulvodynia as it is a diagnosis of exclusion, a more probable reason may be due to a combination of poor awareness of the condition amongst the general public and inadequate training of healthcare professionals. It has been well documented that in the United States that clinicians are inadequately trained to address health issues of the genitals, especially conditions that may be associated with sexual dysfunction.13,14 While no such research exists in Australia, it is possible that similar training deficits would be seen in Australian clinicians, as has been reported for other complex gynaecological conditions such as endometriosis.15
Respondents reported seeing many healthcare professionals with, on average, 4.1 different types of healthcare professionals being consulted. The involvement of multiple healthcare professionals is a positive finding, as previous research has found that treatment is most effective when it addresses the woman’s unique aetiological contributors for which each healthcare professional is specially trained in doing so.16 However, women also reported seeing multiple of the same type of healthcare professional in their journey to find relief from their symptoms, highlighting a lack of continuity of care for many women. The need to see multiple of the same type of healthcare professional may be driven by the patient’s dissatisfaction and poor perceived success with the treatments that these professionals offered.3
Very few treatments prescribed to respondents have demonstrated efficacy. Of the 74 treatments offered to respondents in the present study, only one treatment, cognitive behavioural therapy (CBT), has demonstrated efficacy through a randomised controlled trial (RCT).17 Despite the known efficacy of CBT for vulvodynia, less than half of respondents reported seeing a psychologist, and only two reported receiving CBT as a treatment. This may reflect a potential referral gap; whereby primary practitioners are not referring women with vulvodynia to psychologists to receive CBT as an intervention.
Respondents reported being prescribed many treatments which have demonstrated inefficacy. Despite anticonvulsants being no more effective than placebo,18 16% of respondents were offered anticonvulsants as a treatment option. Similarly, previous research demonstrates poor outcomes associated with vestibulectomy and the potential for a vestibulectomy to worsen patients’ symptoms,19,20 however, 8% of respondents had undergone vestibulectomy as a treatment. Previous RCTs investigating topical lidocaine, electrical stimulation, and biofeedback have demonstrated their inefficacy, however, these treatments were still commonly prescribed to respondents. These findings warrant further investigation to determine the clinical decision making of practitioners in the face of inefficacy data, and highlight the need for better science translation from clinical trials to clinical practice.
Overall, there is a paucity of research on the various treatment options for vulvodynia leaving few options upon which healthcare professionals can base their clinical decision making. Over half (54%) of participants reported receiving medical intervention, however, there is little evidence to support the role of oral or topical pharmacotherapy in vulvodynia management.10 The role of conservative therapies offered by allied health and complementary medicine professionals is even less clear, with no supporting RCTs having been conducted. While some healthcare professionals may provide effective interventions for patients, further rigorous trials are required to determine the optimal management of vulvodynia to provide clinicians with a solid foundation on which to base their clinical decision making. It is not until this evidence base is provided that we can expect to see meaningful improvements in vulvodynia management on a population level.
The findings and implications of this study should be considered in light of the strengths and limitations of the study design. The anonymous nature of the survey is a clear strength, meaning respondents were able to answer questions where they felt comfortable, adding to the likelihood that responses were truthful,21 increasing confidence in the results. The online nature of the survey may have biased the sample towards women who engage with online technology and social media. While 50 respondents appears to be a small sample, an a priori sample size was calculated at 40 respondents based on the lifetime prevalence rate of vulvodynia and the recruitment success of previous, similar research.5,11 Future research could consider additional ways to recruit a greater sample to maximise confidence in results. The quantitative focus of the survey also meant that participants were not able to expand and provide reasoning behind their responses, such as why they visited multiple of the same type of health professional. Future research should look to expand on the journey that Australian women with vulvodynia take through the healthcare system, from both the patient and clinician perspective, to help better understand help-seeking and health-providing decision making.
Australian women with vulvodynia experience a long diagnostic delay and remain in pain several years after receiving their diagnosis. They visit multiple healthcare professionals in their search for relief and receive numerous treatment modalities. Very few of the treatments that women receive have demonstrated efficacy in the literature. There is a dire need for further high-quality studies to be conducted to help guide clinical practice in the use of multidisciplinary management and provision of evidence-based treatments to Australian women with vulvodynia. It is only when this high-quality research is completed that women will not only be able to find relief but find it in a timely manner.