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Vulvovaginal Pain Disorders: Navigating the Challenges of this Hidden Pain

As the year rolls around, so does the time for your annual gynecologist visit—a visit many women approach with apprehension. For you, each internal exam brings not only physical pain but also emotional distress, as you’re advised to “just relax more.” This struggle extends beyond the doctor’s office, impacting your sexual experiences and causing friction in romantic relationships. Despite trying various methods like a glass of wine, increased lubrication, extended foreplay, and deep breathing, the pain persists, leading to feelings of shame and sadness.

You might think you’re alone in this, but you’re not. Remarkably, one in four women will experience vulvar pain at some stage in their lives (Shallcross et al., 2018). This pain can be either constant or touch-induced, present from birth or develop later, and is attributed to a range of factors including nerve proliferation, inflammation, genetic factors, infections, muscle spasms, hormonal changes, and more (Pukall et al., 2016). This complex condition is broadly termed “vulvodynia,” encompassing various subtypes such as vaginismus, vestibulodynia, persistent genital arousal disorder, and pudendal neuralgia, among others (Goldstein, n.d.). The impact of living with a chronic vulvovaginal pain condition is multifaceted and profound. Some of the effects include:

Impact of Vulvovaginal Pain on Self-Identity

Sexual desire and experience form a critical part of our developmental journey, particularly during late adolescence and early adulthood. This period is often marked by exploration of our bodies, discovery of attractions, understanding of likes and dislikes in relationships, and the development of a sexual identity. When this crucial aspect of self-identity is impacted by a condition causing sexual pain, many women describe feelings of being “broken,” “betrayed,” and “disconnected” not only from their bodies but also from significant parts of their identities. The importance of sexual health parallels that of emotional, mental, and physical well-being, with potentially severe consequences when it is compromised. For instance, research indicates that up to one-third of individuals with vulvovaginal pain may develop major depression (Tight Lipped, 2023), while 60% report a loss of control over their bodies and 42% feel they have no control over their lives (Arnold et al., 2006).

Strain on Relationships

Vulvovaginal pain conditions are often referred to as “secret pain” due to the sensitive and private nature of the subject. In many social settings, discussing sexual health remains taboo, leading women to conceal their struggles, as open conversation about such topics is frequently deemed socially inappropriate. This secrecy can result in profound isolation. Additionally, vulvovaginal pain disorders significantly impact women’s romantic relationships. The inability to engage in penetrative sex, a form of intimacy many desire, along with partners often feeling culpable for the pain, adds complexity to the relationship. Consequently, it is not unusual for both individuals in a relationship to undergo cycles of anxiety and depression, highlighting the far-reaching effects of these conditions.

Challenges in Diagnosis and Care

Vulvovaginal pain and seeking medical supportAmong the most challenging aspects for women suffering from these pain conditions is the protracted journey to obtain an accurate diagnosis and effective treatment. Typically, it involves consulting with three or more healthcare providers over several years to finally arrive at the correct diagnosis (Harlow et al., 2003). The delay often stems from a significant gap in medical education: a large portion of OB/GYN programs do not adequately cover pain conditions in their curriculum (Tight Lipped, 2023). Consequently, many doctors lack the necessary training and knowledge. This gap not only prolongs the diagnostic process but can also lead to additional traumatic experiences during medical consultations and intimate encounters, leaving lasting negative impacts. Furthermore, the scarcity of local specialists in this field, coupled with the common issue of these specialists not accepting insurance, poses substantial barriers to accessing care. Even when a specialist who accepts insurance is found, many women face uphill battles with their insurance providers to secure coverage for specific treatments.
If you’re experiencing vulvovaginal pain, things may feel extraordinarily hopeless to you. But with time, intention, and support you can make progress. Here are some suggested paths forward:
  1. Self-advocate: It shouldn’t have to be stated, but you have the right to have your pain believed by medical professionals. The right doctor for you is out there, so keep hunting until you find them. Specifically, seek out experts like “sexual medicine specialists” or “gynecological pain disorder” specialists, who possess comprehensive training in these conditions. If you’re feeling weary from a prolonged diagnostic journey, don’t hesitate to enlist a trusted friend, partner, or family member to aid in your search for the appropriate care.
  2. Get Connected: Increasingly, communities for women with these pain conditions are emerging nationwide. For instance, Facebook hosts numerous private support groups offering valuable assistance. Tight Lipped, an active grassroots advocacy organization, regularly organizes in-person and virtual events in various cities and can connect you to support groups and related book clubs. Engaging in activities such as women’s yoga, pole dance fitness, or salsa classes not only fosters connections with supportive women but also aids in reestablishing a connection with your body and rediscovering your sense of sexuality.
  3. Find the Right Resources: In the book When Sex Hurts, written collaboratively by leading sexual medicine specialists and psychologists, readers find a comprehensive guide covering over twenty causes of pain, advice on selecting the right doctor, information on the latest treatments, and insights into how our mindset can amplify or alleviate pain. This book is an invaluable resource, regardless of where you are in your journey. Additional resources are detailed at the end of this post.
  4. Find the Right Therapist: For women with vulvovaginal pain conditions, one of the most affirming experiences is consulting a therapist who is knowledgeable about their condition. These women often find themselves repeatedly explaining their disorder to others, encountering a lack of understanding or awareness. The power of recognition—of not having to explain—is immeasurable. Therapeutic support should encompass a multi-faceted approach tailored to the unique and complex experiences of these women and their partners, including:
    • Grief Processing: Patients with chronic pain often endure continuous grief, fluctuating between hope and despair as they navigate various treatments and consultations. Techniques that allow for engagement with different aspects of the self and exploration of emotions like anger, resentment, and despair can be profoundly helpful.
    • Cognitive Behavioral Therapy (CBT) for Chronic Pain: CBT is effective in reducing anxiety and pain in vulvovaginal pain patients (Brotto et al., 2012). This approach acknowledges that repetitive pain experiences can lead to heightened pain anticipation and perception. While this therapy is beneficial for many, it’s important to recognize that it may not suit everyone, and either choice is valid in a therapeutic plan.
    • Sensate Focus Sex Therapy: Used in both individual and couples therapy, this method involves a series of at-home exercises designed to foster mindful, nonjudgmental exploration of oneself and one’s partner. It redefines perceptions of sex, aids in overcoming anxiety and trauma, and progresses towards various types of touch. In couples therapy, it also serves to empower both partners and enhance communication.
    • Creative Arts and Movement: Expressing struggles through art, music, or dance can be cathartic and instrumental in processing unresolved emotions, as well as reconnecting with one’s body and sense of sexuality.
    • Collaboration: Therapists should actively help connect patients with the right doctors, support groups, and relevant peer-reviewed research. They should collaborate with other healthcare providers, such as pelvic floor therapists, to align treatment goals and provide comprehensive care.

If you are experiencing a vulvovaginal pain condition, it would be my honor to support you in your journey. You are not alone.

Caitie McCormack, MA, LPC-IT is a member of Tight Lipped advocacy group, which campaigns for proper research funding and sufficient insurance coverage to be given for vulvovaginal pain conditions, works to smash the stigma of these conditions through support groups and podcasts, and collaborates with medical schools across the country to launch new curriculum in OB/GYN programs that makes proper diagnosis and treatment of vulvovaginal pain conditions a standard in schools. Caitie has received training in sexual health assessment & treatment from University of Michigan and has helped many women find the care they need. She has developed relationships with some of the top doctors for vulvovaginal pain conditions in the country and remains regularly tuned in to new research from organizations like the International Society for the Study of Women’s Sexual Health (ISSWSH) and the Kinsey Institute.

Additional Resources

Tight Lipped (

National Vulvodynia Association (

The Centers for Vulvovaginal Disorders (

San Diego Sexual Medicine (

Urology & Sexual Medicine (

When Sex Hurts: Understanding and Healing Pelvic Pain by Andrew Goldstein, M.D., et al.

Vagina Obscura by Rachel Gross

Instagram @jillkrapfmd and @drrachelrubin


Arnold, L.D. et al. (2006). Vulvodynia: Characteristics and associations with comorbidities and quality of life. Obstetrics Gynecology 107(3), 617-624.

Brotto, L.A., Basson, R., Carlson, M., & Zhu, C. (2012). Impact of an integrated mindfulness and cognitive behavioural treatment for provoked vestibulodynia (IMPROVED): A qualitative study. Sexual & Relationship Therapy, 28(1-2).

Goldstein, A.T. (n.d.). Dyspareunia and pain algorithm. Washington, D.C.; CVVD.

Harlow, B.L. & Stewart, E.G. (2003). A population-based assessment of chronic unexplained vulvar pain: Have we underestimated the prevalence of vulvodynia? J Am Med Women’s Assoc. 58(2), 82-88.

Pukall, C.F., Goldstein, A.T., Bergeron, S., Foster, D., Stein, A., Kellogg-Spadt, S., Bachmann, G. (2016). Vulvodynia: Definition, prevalence, impact, and pathophysiological factors. The Journal of Sexual Medicine.

Shallcross, R., Dickson, J. M., Nunns, D., Mackenzie, C., & Kiemle, G. (2018). Women’s subjective experiences of living with vulvodynia: A systematic review and meta-ethnography. Archives of Sexual Behavior, 47(3), 577–595.

Tight Lipped. (2023). Our Story. Accessed 24 January 2024.

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Caitie McCormack, MA, LPC

Accepting clients from both IL and WI, Caitie works with individuals ages 15+ and relationships of all kinds. She particularly focuses on processing trauma (religious, medical, and relational), coping with chronic pain, navigating life transitions, and using experiential techniques in sessions to create transformative experiences. Caitie brings to therapy nearly a decade of experience as a researcher in the business world, resulting in a strong sense of duty to stay current on new treatments and techniques. She is committed equally to research and creativity and will work diligently to find the most effective strategies for your individual needs.

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