Women’s Experiences of Vulvodynia: An Interpretative Phenomenological Analysis of the Journey Toward Diagnosis (original) (raw)
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Women in "Sexual" Pain: Exploring the Manifestations of Vulvodynia
This study explored the sexual and pain histories and pain presentations of women with forms of chronic vulvar pain (i.e., vulvodynia). One hundred and seventy-seven women with five subtypes of vulvodynia completed an online questionnaire. Groups were similar across several domains: participants experienced pain for many years during sexual and nonsexual activities, and pain was rated as moderate to severe. However, several differences emerged when considering pain development, number of sexual partners, and treatment seeking. This study illustrates how severe vulvodynia pain can be, regardless of subtype. However, not all vulvodynia sufferers are alike, and distinctions between research and clinical practice are highlighted.
Women’s Subjective Experiences of Living with Vulvodynia: A Systematic Review and Meta-Ethnography
Archives of Sexual Behavior
Vulvodynia, the experience of an idiopathic pain in theformofburning,soreness,orthrobbinginthevulvalarea,affects around 4-16% of the population. The current review used systematic search strategies and meta-ethnography as a means of identifying, analyzing, and synthesizing the existing literature pertaining to women's subjective experiences of living with vulvodynia. Four key concepts were identified: (1) Social Constructions: Sex, Women, and Femininity: Women experienced negative consequences of social narratives around womanhood, sexuality, and femininity, including the prioritization of penetrative sex, the belief that it is the role of women to provide sex for men, and media portrayals of sex as easy and natural. (2) Seeking Help: Women experienced the healthcare system as dismissive, sometimes being prescribed treatments that exacerbated the experience of pain. (3) Psychological and Relational Impact of Vulvodynia: Women experiencedfeelingshameandguilt,whichinturnled totheexperienceof psychological distress, low mood, anxiety, and low self-esteem. Moreover, women reported feeling silenced which in turn affected their heterosexual relationships and their peer relationships by feeling social isolated. (4) A Way Forward: Women found changing narratives, as well as group and individual multidisciplinary approaches, helpful in managing vulvodynia. The findings of the review conclude that interventions at the individual level, as well as interventions aimed at equipping women to challenge social narratives, may be helpful for the psychological well-being of women with vulvodynia.
“If Sex Hurts, Am I Still a Woman?” The Subjective Experience of Vulvodynia in Hetero-Sexual Women
Archives of Sexual Behavior, 2008
Vulvodynia has recently been recognized as a significant health problem among women, with a considerable proportion experiencing psychological distress and sexual dysfunction for many years. This study used a material-discursive framework and a qualitative methodology to investigate women's subjective experience of vulvodynia within the context of a hetero-sexual relationship, and their negotiation of coitus, commonly associated with vulvar pain. Seven women, who had experienced vulvodynia between 2 and 10 years, took part in in-depth interviews. Thematic decomposition drawing on a Foucauldian framework for interpretation identified that six of the seven women took up subject positions of ''inadequate woman'' and ''inadequate partner,'' positioning themselves as failures for experiencing pain during coitus, which they interpreted as affecting their ability to satisfy their partners sexually, resulting in feelings of shame, guilt, and a decreased desire for sexual contact. This was interpreted in relation to dominant discourses of femininity and heterosexuality, which conflate a woman's sexuality with her need to be romantically attached to a man, position men as having a driven need for sex, and uphold coitus as the organizing feature of hetero-sex. Only one woman positioned herself as an ''adequate woman/partner,'' associated with having renegotiated the coital imperative and the male sex drive discourse within her relationship. These positions, along with women's agentic attempts to resist them, were discussed in relation to their impact on hetero-sexual women's negotiation of vulvodynia. Implications for future research and vulvodynia treatment regimes are also raised.
The European journal of general practice, 2018
The gap between the relatively high prevalence of provoked vulvodynia (PVD) in the general population and the low incidence in primary care can partly be explained by physicians' lack of knowledge about the assessment and management of PVD. To recognize barriers and facilitators of GPs in the diagnostic process of women presenting with recurrent vulvovaginal complaints. A qualitative focus group study in 17 Dutch GPs, five men and 12 women. An interview guide, based on the scientific literature and the expertise of the researchers, including a vignette of a patient, was used to direct the discussion between the GPs. The interviews were audiotaped and transcribed verbatim. A systematic text analysis of the transcripts was performed after data saturation was reached. Analysis of the interviews generated three major themes: Identifying and discussing sexual complaints, importance of gender in professional experience, and coping with professional uncertainty. Within these themes, th...
Vulvodynia Viewed From a Disease Prevention Framework: Insights From Patient Perspectives
Sexual Medicine Open Access, 2020
Introduction: Persons with vulvodynia (a chronic vulvar pain condition) suffer many barriers to diagnosis and treatment, several of which may be exacerbated by the sociocultural and geographical context in which they live. Aim: We drew on the experiences of patients with vulvodynia who were living in small urban and rural communities to learn what they perceived as the major barriers to diagnosis and treatment as well as to probe for possible solutions. Methods: For this qualitative case study, we conducted 3 focus groups with a total of 10 participants, drawn from patients seen at our academic tertiary referral center, with a goal of understanding their lived experience with vulvodynia. Main Outcome Measures: The patient dialogue was coded into themes and temporally grouped to illustrate struggles and victories in diagnosis and treatment. Results: Participants confirmed that healthcare provider knowledge and attitudes as well as system challenges (specialist and allied healthcare provider availability) are major barriers to timely diagnosis. Of novel interest are other factors that exacerbate distress and delay diagnosis such as patients’ inadequate knowledge of sexual functioning and sociocultural messages regarding “normal” sexual activity. Our work suggests that a disease prevention framework that includes comprehensive sexual education before or at the onset of sexual activity may be of benefit in reducing the burden of vulvodynia when added to strategies to increase healthcare provider knowledge and improve access to effective treatments. Conclusion: While healthcare provider knowledge and attitudes are often at the forefront of barriers to diagnosis, our study suggests that to minimize patient distress and expedite diagnosis, resources must also be directed to promoting comprehensive sexual health education.
The Neglected Reflections of Vulvar Pain
Visual Ethnography 13(1), 2024
Italian society does not acknowledge vulvar pain sufferers as patients affected by legitimate pain: the condition is not supported by the national healthcare system, besides being medically unexplored and socially invisibilized. Patients do not see themselves as deserving care until sexual intercourse is compromised. Vulva health gains awareness when feminine sexual performance deviates from heteronormative models and coital imperatives. In a feminist gendered perspective, this paper presents the artistic and scientific exhibition "Vulvar Pain", based on anthropological research to explore vulvar pain experiences thought qualitative participatory methods. Research partners co-produced symbolic handicrafts revealing the difficulties of be seen as bodies deserving care. This effort aims to present scientific results through a public engagement event, including arts, workshops, and roundtables with health professionals and patient associations. The exhibition "Vulvar Pain" advocates considering genital pain beyond the cultural taboo of sexuality, privileging visual narratives to facilitate dialogue between biomedical discourse, social sciences, and the embodied knowledge of sufferers. Considering the multiple lens of this case study, the paper presents collaborations between ethnographers, artists and designers, engaging in the co-construction of new forms of knowledge that can be seen, touched, smelled, sat upon, and circulated to unfold vulvar taboos.
American Journal of Obstetrics and Gynecology, 2014
We used validated sensitive and specific questions associated with clinically confirmed diagnoses of unexplained vulvar pain (vulvodynia) to compare the cumulative incidence of vulvar pain and prevalence of care-seeking behavior in Boston metropolitan area (BMA) and in Minneapolis/Saint Paul metropolitan area (MSP) from 2001 through 2005 using census-based data, and 2010 through 2012, using outpatient community-clinic data, respectively. STUDY DESIGN: We received self-administered questionnaires from 5440 women in BMA and 13,681 in MSP, 18-40 years of age, describing their history of vulvar burning or pain on contact that persisted >3 months that limited/prevented intercourse. RESULTS: By age 40 years, 7-8% in BMA and MSP reported vulvar pain consistent with vulvodynia. Women of Hispanic origin compared to whites were 1.4 times more likely to develop vulvar pain symptoms (95% confidence interval, 1.1e1.8). Many women in MSP (48%) and BMA (30%) never sought treatment, and >50% who sought care with known health care access received no diagnosis. CONCLUSION: Using identical screening methods, we report high prevalence of vulvar pain in 2 geographic regions, and that access to health care does not increase the likelihood of seeking care for chronic vulvar pain.
BMC Pregnancy & Childbirth, 2015
Background: Vulvodynia is a potentially debilitating chronic pain condition affecting the vulva (external genitalia) in women, with typical age of onset during the early-to mid-reproductive years. Yet, virtually nothing is known about the thoughts, feelings and experience of vulvodynia patients regarding conception, pregnancy and delivery; including the effect that a hallmark symptom, dyspareunia (painful sex), can have on a couple's physical and emotional ability to conceive. We sought to describe these experiences and beliefs among women with vulvodynia who were pregnant or who recently had delivered a child. Methods: The study used in-depth, qualitative exploratory interview methods to gain a deeper understanding of these experiences for 18 women with vulvar pain who were recruited from an existing, nationally-sampled prospective pregnancy cohort study.
2010
The many different health issues related to the vulva takes an interdisciplinary and holistic approach as medical, psychological, sexological and existential aspects are intimately interwoven. Often vulval problems are chronic and the patients have them for many years. In this paper we suggest holistic sexology to be an important intervention for a long series of vulval health problems. We argue that the vulva carries immense symbolic meaning making it a focus point in the body of the most difficult feelings and emotions, making the vulva more exposed to psychosomatic problems that any other organ of the body. We recommend as an important tool what have been called "clinical medicine"-curing the patient through the growth of self-insight coming from the physicians and the patient's common exploration and investigation into her life, body, gender, sexuality, and feelings associated to her inner and outer genitals. A surprisingly number of different diseases and disorders can be cured in this simple way: Vaginal infections (non-STDs), skin problems such as lichen sclerosus, lichen planus, and lichen simplex chronicus, vulvovaginitis/inflammation/chronic infection/vaginosis of the vulva and vagina, chronic pain, (burning, irritation, pruritus), vulvodynia and pelvic pain syndromes, sterile and non-sterile urinary tract inflammations, PMS, amenorrhea, and sexological dysfunctions including sexual aversion syndrome and psychosexual developmental disturbances, lack of genital self esteem. NNT=2 estimated from the literature. Tools are talk therapy and therapeutic touch including five tools of holistic manual sexology i.e. including the sexological examination. Finally the ethics of the vulva clinic is discussed.