Health Care Experiences of Women With Vulvodynia

Vulvodynia is a condition that involves chronic pain in the vulva that has no readily identifiable cause. The pain can be burning, stinging, or stabbing, and it can be localized in one area or affect the entire vulva. Sometimes, the pain is triggered (provoked) by touch, and other times the pain is constant or occurs unprovoked.

Unfortunately, there is still a lack of knowledge about vulvodynia, even among health care professionals. As such, many women who are suffering from this condition end up visiting multiple general health care providers and specialists before receiving an accurate diagnosis and treatment to help manage their pain.

This can be understandably frustrating and may lead to negative impressions of the health care system. Consequently, a team of researchers decided to explore the health care experiences of six women with vulvodynia in the UK to gain a better understanding of the patients’ perspectives and to highlight aspects of the health care experience that may be able to be improved.

The six participants, aged 21 to 30 years, had all received an official diagnosis of vulvodynia 1 to 3.5 years before the start of the study. Each patient completed a one-session semi-structured interview that lasted between 55 and 96 minutes. The interviews, which included questions aimed at exploring the participants’ experiences of seeking medical help for vulvodynia symptoms, were audio recorded and then transcribed verbatim. Later, the researchers used the transcripts to identify common themes among the six interviews.

Ultimately, five themes emerged from the interviews: the impact of diagnosis, patients’ perception of health care, self-guidance and lack of direction, gender as a barrier to effective care, and a lack of consideration of psychological factors.

• Impact of diagnosis: All of the participants described their experiences prior to their diagnosis as negative, characterizing the process as frustrating, tedious, and difficult. Upon receiving a diagnosis, some women felt validated and as if they were making progress. On the other hand, some women were equally frustrated after their diagnosis as they felt they were often recommended ineffective treatments.
• Patients’ perception of health care: In this study, the authors found that private care was viewed more positively by the patients than the UK’s National Health Service (NHS), where many of the participants expressed the feeling that they had to “fight” for care.
• Self-guidance and lack of direction: Many of the women in this study shared that they felt their health care providers lacked knowledge about vulvodynia, and therefore they had to be self-sufficient in looking up information about the condition online.
• Gender as a barrier to effective care: Several of the participants perceived judgement and gender-based discrimination from providers during some of their health care visits. They expressed that some of the health care professionals seemed like they thought they were exaggerating their pain or coming off as “overemotional” or “hysterical.”
• Lack of consideration of psychological factors: Multiple patients felt that their mental and emotional health was overlooked during the treatment process. They shared that they would have benefited from further psychological support to help them cope with their condition.

Overall, this study reveals that there is room for improvement in enhancing the health care experiences of women with vulvodynia. In addition to providing health care providers with adequate information and resources on identifying and diagnosing vulvodynia in their medical training, it could also be helpful to expand the information on this condition that is available to the public.

Although this study looked at the health care experiences of women with vulvodynia in the UK, patients in North America may encounter similar and different issues with seeking treatment. For example, they may similarly struggle to find health care providers who are knowledgeable about vulvodynia, but they may also face substantially higher health care costs than their counterparts in the UK. The following are a few resources for vulvodynia patients in North America:

• The Vulvodynia Self-Help Guide from the National Vulvodynia Association
• The “Find a Provider” page of ISSWSH
• Tight Lipped

References:
Templeman, L., Eberhardt, J., & Ling, J. (2023). Exploring the health care experiences of women diagnosed with vulvodynia. The Journal of Sexual Medicine, 20(1), 97-106. https://doi.org/10.1093/jsxmed/qdac023