Help-seeking experiences and intimate partner support in vulvodynia: A qualitative exploration

Delayed diagnoses, help-seeking, and experienced injustice

Vulvodynia is largely underdiagnosed, with a diagnosis taking an average of 2 years and multiple visits to a variety of healthcare professionals. ²² It is diagnosed through a process of exclusion, often leading to misdiagnoses of other conditions of the vulva, such as vaginismus, vaginitis, or pudendal neuralgia.^2,23 Diagnosis is critical for any chronic pain condition as it can lead to feelings of validation, relief, as well as increased pain acceptance and commitment to manage the condition. ²⁴ Particularly for vulvodynia, receiving a diagnosis can aid women to articulate their symptoms and facilitate communication about their condition. The psychological consequences of vulvodynia on body image, self-esteem, depression, and anxiety can be negatively influenced by a lack of diagnosis, leading to women feeling abnormal, isolated, and embarrassed as well as underinformed about how to effectively manage their condition. ²⁵

Help-seeking rates among women with vulva pain are low due to myriad structural, social, and individual-level barriers. Approximately 50% of women with chronic vulva pain do not seek medical help, in large part due to perceived stigmatization from healthcare professionals. ²⁶ Women of colour, in particular, have reported elevated levels of medical mistrust and perceived discrimination, resulting in a tendency to avoid seeking assistance for vulvovaginal pain. ²⁷ Those who do seek care typically report seeing multiple different healthcare professionals from different specialisms (e.g., general practice, gynaecology, physiotherapy) in their pursuit of a diagnosis and treatment. ²⁸ Lack of consensus among healthcare professionals can impede confirmative diagnosis of vulvodynia, leading to further adverse psychological consequences.^29,30 Psychological factors (e.g., anxiety, depression), negative self-perception and self-esteem, poor self-regulation skills (e.g., avoidance coping, catastrophic thinking), societal and internalized stigma, and interpersonal relationship factors can also inhibit help-seeking behaviour. ³¹

A common theme reported in studies on vulvodynia is experienced injustice from the healthcare system and healthcare professionals.^32,33 That is, women report feeling disbelieved and stigmatized by doctors, with their symptoms being minimized and misunderstood.^34,35 In a previous study, women reported a lack of compassion and understanding from healthcare professionals about their symptoms. ³⁰ In addition, they described how difficult it had been to obtain a diagnosis, and how persistent they had to be in order to do so. ³⁰ The various challenges patients experience in seeking help for vulva pain can deter future help-seeking and exacerbate negative health- and wellbeing-related outcomes.^26,31,35 However, it should be noted that research in this area to date is limited in its representativeness of lower socioeconomic status groups, disabled individuals, and minority gender, sexual, and racial and ethnic groups. Individuals from these groups may have more negative healthcare experiences and face additional and unique barriers to accessing care. ²⁷

Partner role

Considering the nature of the pain in vulvodynia, the role of intimate partners should not be overlooked. Partners may trigger pain during sexual activities, but they also witness and have their own reactions to the pain. ³⁶ The emotional consequences of vulvodynia on women’s self-esteem and body image, as well as on their mental health may also affect their intimate relationships. ³⁷ Nevertheless, partners can offer a form of social support, which has been found to be crucial for people with chronic pain conditions. ³⁸

Current research on partner support has mainly focused on relationship satisfaction and the influence of partner responses to the pain. For instance, it has been found that men’s relationship satisfaction may undermine their motivation to understand women’s pain experiences, which could potentially lead to low partner support and result in increased pain catastrophising and pain intensity. ³⁹ Partner responses to women’s pain have been categorized as promoting an avoidant or an adaptive approach to the pain. Adaptive and facilitative partner responses have been associated with lower pain and disability as well as lower depression and anxiety compared with avoidant responses. ³⁹ Partner supportiveness was also associated with increased sex life-related satisfaction and decreased sex life-related distress in a recent study involving women of colour with chronic vulvovaginal pain. ⁴⁰ Consequently, intervention research on couples has emphasized the need to increase disclosure and empathetic response to women’s pain to ensure relationship satisfaction and effective coping with vulvodynia symptoms. ⁴¹ Recent literature has hitherto failed to explore how partner support can influence other behaviours associated with the management of vulvodynia, such as seeking medical help, willingness to engage with treatments, as well as exploring alternative options. This literature is also limited by its near exclusive focus on young adults, which limits its generalizability to other age groups. Furthermore, extant qualitative research on relationships in the context of vulvodynia has predominantly involved couples being interviewed together, which may bias participants’ responses. Interviewing women with vulvodynia about their perceptions of partner support without their partner being present may facilitate more open expression.

Current study

The aim of the present study was to explore the help-seeking behaviours of women with vulvodynia and the role of partner support in promoting help-seeking and self-management. Semi-structured online interviews were conducted to provide an in-depth understanding of women’s help-seeking experiences and the role of partner support in help-seeking behaviours and management of vulvodynia.

Design

A qualitative interpretive design was used.

Ethical considerations

Ethical approval was granted by the General University Ethics Panel at the University of Stirling. All participants gave written informed consent via an online form before being interviewed. Consent forms were stored securely and separately from the audio-recordings and transcriptions of interviews to protect participants’ anonymity. To protect the confidentiality of participants and comply with General Data Protection Regulation (GDPR), transcripts were anonymized, and data were stored on a secure online university-affiliated system to which only the research team had access.

Participants

Women with vulvodynia were eligible to take part in the study. Participation was open to women who had self-diagnosed vulvodynia as well as those who were formally diagnosed by a healthcare professional. Inclusion criteria were being above the age of 18 years and currently or previously having been in an intimate relationship. The only exclusion criterion was not being able to complete the study in English.

A total of 10 participants took part in the study. Evaluation of data adequacy ⁴² and information power ⁴³ was used to guide our decision to cease recruitment in light of time constraints and lack of funding. Participants were recruited via online social media platforms, including Facebook support groups for people with vulvodynia. Participants ranged in age from 25 to 57 years (M = 37.9, SD = 12.23 years). The median time elapsed between symptom onset and diagnosis was 3 years (interquartile range = 5.5). Table 1 provides participants’ demographic information.

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Table 1.

Participant characteristics.

Pseudonym	Age	Ethnicity	Age at symptom onset	Age at formal diagnosis
Louise	41	White	28	28
Jane	27	White	16	25
Lisa	57	White	50	Self-diagnosed
Emily	43	White	35	37
Christina	30	White	17	22
Mary	56	White	51	52
Anna	25	Hispanic	18	21
Rose	29	White	20	23
Ann	45	White	21	22
Bethany	26	White	16	24

Procedure

A purposive convenience sampling approach was used wherein the study was advertised via social media platforms and the study information was shared by relevant professional networks and patient groups. This approach offered an efficient and cost-effective way to access the target population. Potential participants were asked to provide their email address via a secure online form if they wished to take part in the interview. Those who provided their email address (N = 24) received a detailed participant information sheet and were asked to sign a digital consent form if they wished to proceed with the study. Once consent was provided, an interview date was scheduled.

Ten women with vulvodynia gave consent and ultimately took part in the study. Semi-structured interviews were conducted online via Microsoft Teams using a non-directive topic guide. Interviews were conducted by the lead researcher (A.Z.L.). The guide was formed based on existing literature and reviewed by each member of the research team for suitability. A copy of the topic guide is available as supplemental material. Interviews lasted between 30 and 45 min. Participants were asked to provide a preferred pseudonym prior to the interview. The interviews were recorded to facilitate the data analysis. Interview recordings were transcribed verbatim for analysis and subsequently destroyed. Data collection took place over a 3-month period (May–July 2023). To aid comprehensive reporting, the Consolidated Criteria for Reporting Qualitative Research (COREQ) ⁴⁴ were followed. A COREQ checklist is provided as supplemental material.

Data analysis

Reflexive thematic analysis (TA) according to Braun and Clarke^45,46 was used to analyse the data. Reflexive TA was selected as it provided a flexible approach to identifying patterns of meaning to address the research question: ‘What are the help-seeking experiences of women with vulvodynia and what is the role of perceived partner support?’ The researcher’s epistemological position of critical realism aligned with the reflexive TA approach, as it recognizes the vital role of the researcher’s subjectivity during the process of analysis.

The six steps of reflexive TA were followed in an iterative manner. Following completion of the interviews, the lead researcher (A.Z.L.) familiarized themselves with the data by engaging with the transcripts multiple times. During this phase, the researcher asked critical self-reflective questions (e.g., what was guiding their interpretation of the data? How would they feel in the discussed situation?) as well as critically reflecting upon what might influence each participant’s interpretation of the situation they had experienced. ⁴⁷ Initial codes were constructed through an inductive and exploratory process. Codes were then grouped into clusters to generate initial themes, each organized around a central meaningful and distinct concept. The researcher named and defined each theme while also reviewing all interview excerpts to ensure the themes were appropriate. The research team met frequently during this process to discuss the data and analysis, and to collaboratively review codes, categories, and themes for comprehensiveness, coherence, and grounding in the data.

Reflexivity

It is critical to highlight the researcher’s role in the process of conducting this research project as well as in the data analysis. The personal experiences of the researchers could have influenced the interpretation of, and the inferences made about the help-seeking behaviours of women as well as the role of partner support. Importantly, the lead researcher conducted both interviews and analysis of data, and thus, pre-existing perspectives could have influenced the reported observations. The researcher’s subjectivity is a crucial and integral component of reflexive TA and, thus, it can constitute a strength rather than a weakness by ensuring transparency and self-reflection.^46,48

Several steps were taken to ensure that the study and analysis were conducted rigorously and principles of reflexivity were adhered to. Reflexive writing was used to record the researchers’ viewpoints and choices throughout the research process, generating a record that could be consulted later. Frequent meetings wherein the researchers identified and challenged assumptions and personal beliefs ensured that collaborative reflexivity was practised throughout the research process.

Help-seeking experiences

Three themes were constructed from the data on help-seeking behaviours and experiences of women with vulvodynia. These themes are described with illustrative participant quotes, below.

Partner support

Three themes were constructed from the data on partner support. These themes are described with illustrative participant quotes, below.

Help-seeking experiences

Various significant challenges associated with accessing a diagnosis, treatment, and self-management support for vulvodynia are reflected in the current study. Participants felt they had been failed by public healthcare systems due to a lack of clear information about where to seek help, as well as the lack of referral pathways. Many were also disappointed at the lack of knowledge among healthcare professionals about vulvodynia, particularly in primary care. Many participants ultimately sought private healthcare before receiving their diagnosis, which has significant cost implications. Accessing private healthcare led to more positive help-seeking experiences, as women felt their symptoms were better understood and investigated, and that they were offered adequate time to explore treatment options. These individuals felt they had no choice but to seek help privately; however, those without the financial resources to access private healthcare have no choice but to persevere with under-resourced public healthcare services that have hitherto failed to deliver appropriate care. While limited healthcare resources affect everyone, it is important to ensure that equal standards of care are accessible to all women experiencing vulva pain. ³⁵ These findings are not particularly surprising; indeed, many of the systemic issues identified in the current study were highlighted in a National Institute of Health report on vulvodynia in 2012. ⁴⁹ That little progress has been made to address these issues in the past decade is concerning and highlights the need for further investment in efforts to advance our scientific understanding of vulvodynia, to enhance its clinical care, and to improve outcomes for those who live with vulva pain.

In line with the extant literature, participants reported visiting multiple different healthcare professionals within the same field, and a median 3-year gap between symptom onset and obtaining a diagnosis.^13,14 There was high variability in time to diagnosis in this sample, with one participant being self-diagnosed without formal confirmation from a healthcare professional despite presenting with symptoms for 7 years. There are several factors that may explain this variability, in particular, poor understanding among healthcare professionals of vulvodynia and its multifactorial aetiology. ⁵⁰ More research is needed to understand the aetiology of vulvodynia, while the implementation of more educational and professional development programmes for healthcare providers will improve vulvar care.

Participants perceived a lack of sensitivity and empathy from their healthcare providers, which can have significant detrimental effects on wellbeing and help-seeking behaviours.^30,51 Many expressed disappointment and concern that their doctors viewed vulvodynia as a psychosomatic disorder. For example, one participant stated:

I’m not convinced that it’s a good idea to be saying that this stuff is psychological, because I don’t think it is. I think it’s good to have psychological support when you’re going through something like this, but I don’t think it’s good when medicine assumes that pain is caused by, like, you just not doing well in your head. I think that’s dangerous [. . .] ‘it’s all in your head,’ [. . .] that’s damaging to hear.

While psychosocial factors are implicated in vulvodynia and its diagnosis, ⁵⁰ there is strong evidence of physical components to this condition. ¹ Associations with psychosocial variables do not and should not invalidate patients’ pain experiences. There is a need to appropriately educate and inform healthcare professionals about the body–mind connection and its implications for chronic pain so women in their care are understood and appropriately supported. Given the complex interplay of physical and psychosocial factors that influence the presentation of vulvodynia,^13,14 a multidisciplinary and multimodal approach to treatment is critical to ensure holistic care.

The interviews reflected the weight of responsibility participants felt to ensure they received appropriate care for their vulvodynia. Most participants had self-diagnosed vulvodynia before receiving a formal diagnosis, and ultimately felt that had they not investigated their symptoms themselves they would not have been formally diagnosed. They also felt they had to become strong advocates for themselves and demand care, which is consistent with the previous literature.^25,33 Women’s pain is more poorly understood and undertreated compared with pain in men, ⁵² and women are disproportionately required to self-advocate and convince others that their pain warrants care,^35,53 particularly for female-specific conditions. This issue is systemic and constitutes a threat to human rights and public health. ⁵⁴ Data-driven system-wide changes to policy and practice are required to ensure equitable healthcare delivery and effective utilization of healthcare resources.

Participants in this study engaged extensively in health information-seeking behaviour, and highlighted challenges in identifying comprehensive and reliable resources on vulvodynia and its management. Health information-seeking behaviour is a common strategy to support adjustment to chronic illness and facilitate self-advocacy efforts; ⁵⁵ however, separating reliable health information from mis- and disinformation can be a challenge, particularly for those with poorer health literacy. A comprehensive and evidence-based vulva pain ‘toolkit’ disseminated via a reliable source such as the National Health Services (NHS) website could be a useful resource for individuals seeking healthcare and self-management support for vulva pain.

Partner support

Research on partner support has shown that facilitative responses to pain are associated with lower pain and disability, compared with solicitous responses, which have been linked to greater pain through an increase in avoidance responses towards intercourse.^36,39 In the current study, which focused on overall support and help-seeking, participants expressed that their partners mainly provided emotional support when it came to their vulvodynia. Some participants also highlighted that their partners helped them to identify practical solutions and accompanied them to medical appointments, which could be argued to increase motivation and courage to persevere in seeking help.^4,38

In the current sample, low partner support, distracting, and negative responses to vulva pain, such as irritation and frustration, were seldom described. Indeed, it was the participants themselves who felt frustration and anger at the negative effects of vulvodynia on their intimate relationships. Some participants revealed that the negative effects on their intimate relationships motivated them to keep seeking help and finding solutions. Therefore, women’s emotional state and sense-making of the effects of vulvodynia should be taken into consideration when exploring partner roles in future studies.

Importantly, it was also mentioned that vulvodynia was a foreign concept to some partners, leading to increased fear and worry about causing pain, which can negatively impact relationships. As previously highlighted, solicitous responses to pain may lead to avoidance of intimacy^36,39 and, hence, it could be suggested that supportive partners’ emotions and understanding of the condition also have a critical role in the pain experience. Nonetheless, women reported feeling lonely and isolated, irrespective of partner support. This was further highlighted by women expressing frustration at the lack of support from friends and family and poor public awareness of vulvodynia. While partners play an important role, having someone to speak to who experiences a similar situation or being able to communicate your pain to friends and family appears to be critically important to women. This is consistent with social support theory in the context of chronic illness; ⁵⁶ people with chronic conditions may seek support from a subset of their wider social network, or indeed seek out additional sources of support in the online environment. People with chronic conditions may find social support from others with shared experiences more beneficial than support from those who do not have the same condition. ⁵⁷ Many participants in this study sought out information and support via social media, particularly from dedicated online communities of people with vulvodynia. However, unmoderated online activity can lead to increased anxiety and frustration, which could be counterproductive. ⁵⁸ Understanding the social support needs of individuals with vulvodynia may enable the development of evidence-based peer support networks, which have been shown to be beneficial for women with other pain conditions.^59,60

Limitations and future recommendations

The current study provides important insights into the help-seeking experiences of women with vulvodynia and the role of partner support. Nonetheless, several limitations should be considered. Although the current sample was more widely representative in terms of age than those used in previous research on this topic, it consisted predominantly of white, well-educated, cisgender, heterosexual women who could access private healthcare and were willing to disclose personal information about their experiences and intimate relationships, which hinders the representativeness of the findings. This can be largely attributed to the convenience sampling approach. Due to resource limitations, social media was used to recruit participants. Recruitment via social media has well-established limitations in terms of bias and representation. ⁶¹ That said, the cost-effectiveness, reach, and rapidity of targeted social media recruitment make it an important research tool, particularly for women’s health research, which has been historically underfunded.^62,63 Future research should aim to understand the experiences of a greater diversity of individuals, including but not limited to those from ethnic and gender minority groups and people with disabilities. This could be achieved by diversifying recruitment approaches (e.g., clinic-based recruitment and community-based approaches, such as engagement with online support groups, advocacy groups, and relevant community groups and events).

Clinical characteristics of the sample should also be considered. To enhance inclusivity, given the barriers to diagnosis of vulvodynia, ⁶⁴ self-diagnosed women were eligible to participate. Ultimately only one self-diagnosed participant took part in this study; however, given that vulvodynia symptoms overlap with several other conditions (e.g., pudendal neuralgia), it is possible that some self-diagnoses of vulvodynia are not clinically accurate. The experiences of those who struggle to access a diagnosis warrant discussion within this literature; that said, researchers may need to consider whether inclusion of those without a formal diagnosis may be at odds with their research aims. In addition, we did not ask participants to report any comorbidities that may have contributed to their vulva pain (e.g., Ehlers-Danlos syndrome, mast cell activation syndrome, pelvic congestion syndrome, endometriosis, pudendal neuralgia, hip abnormalities, etc.) and therefore influenced their help-seeking experiences.

Finally, although the research was conducted in the United Kingdom, participants had accessed healthcare for vulvodynia in several different countries. This limits the scope of the recommendations for specific health services that can be made based on these data. Nevertheless, the consistency of participants’ experiences highlights that the issues described occur across healthcare settings and contexts. Future research should aim to identify patient-centred targets for improvement in vulvodynia care in key healthcare settings (e.g., primary care) to optimize patient outcomes. Healthcare professionals and policymakers’ perspectives should be included in this work to ensure that recommendations are feasible and implementable so that findings can be effectively translated into practice.