Why So Many Women Hide Their Sexual Pain

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When it comes to women talking about sexual pain, omission is a form of communication.

Vulvodynia = Women’s sexual pain.

Our society still grapples with the experience of female sexual pain. Specifically, vulvodynia (vulvar pain) affects some 16 percent of women. “Vulvodynia is chronic vulvar pain without an identifiable cause,” says a statement from the National Vulvodynia Association (NVA), a non-profit created in 1994 to help improve the health and quality of life of women suffering from vulvodynia. “The location, constancy, and severity of the pain vary among sufferers. Some women experience pain in only one area of the vulva, while others experience pain in multiple areas.” While some pain may be located on the vulva or in the vestibule (the vaginal opening), some women may feel pain internally as well. Unfortunately, millions of women with this condition are being misdiagnosed; and so, millions suffer in silence.

Dyspareunia is an older term to describe all types of female painful sex. The most recent diagnosis of genito-pelvic-penetration pain disorder (GPPPD) is the clinical diagnosis in the Diagnostic and Statistical Manual Version 5. It is the name of the conditions formally known as vaginismus and dyspareunia. Vaginismus results from involuntary contraction of the vaginal musculature. Primary vaginismus occurs in women who have never been able to have penetrative intercourse. Women with secondary vaginismus were previously able to have penetrative intercourse but are no longer able to do so.

How Women’s Sexual Pain Shows Up in the Medical Realm

Epidemiological studies indicate that only 60% of women with vulvovaginal pain seek medical help and among those, 40% never receive a diagnosis. The lack of support from the health care system may contribute to feelings of invalidation and stigmatization often experienced by women with vulvodynia. When it comes to pain specific to female anatomy, like the vulva, diagnoses frequently veer off-course; doctors suspect menopause, PMS, depression, or anxiety. Surprisingly, many of the women sex therapists see are actually younger than 40 and nowhere near peri-menopause or menopause.

Primary care physicians may suspect disorders located in other parts of a woman's body, but not understand that the primary pain is located in the genitals themselves. This gap in a detailed assessment process leaves a woman with the wrong diagnoses and still in pain, with the additional psychological pain and loneliness of being misunderstood. Women presenting with genital pain frequently experience rejection from their biopsychosocial environment, contributing to a belief that silence is better than being misunderstood and embarrassed.

“There's a huge problem,” Elizabeth G. Stewart, M.D., told attendees at a session on vulvovaginal disorders at Internal Medicine 2011. “There's virtually no vulvovaginal training for clinicians.” Due to the minimal training doctors receive around women’s sexual health in medical schools and the health care system in general, doctors may feel stymied when their female patients report having genital pain. She also added that “clinicians also tend to rely on patients' self-diagnosis and manage their problems by phone, or don't do a physical exam before treating, which leads to incorrect therapies."

In a recorded webinar presented by Center for Love and Sex (CLS), created for professionals with my colleague, gynecologist Christ Creatura, titled “How to Help Women with Sexual Pain and Low Desire,” Creatura let therapists and gynecologists know that while examining a woman with vulvovaginal symptoms, a doctor must consider many differential diagnoses. Although we still don’t know exactly what causes all Vulvodynia symptoms, she explained that some contributing factors include:

• An allergy
• Atrophy
• A drug reaction
• Sexually transmitted infections
• Infection
• Low estrogen
• A dermatological source
• Disease elsewhere in the body
• A drug
• Cancer or a precancerous condition
• A combination of these factors

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How Women’s Sexual Pain Affects Their Partners and Relationships

Similar to how the subject of sexual pain gets shut down, minimized, or hidden in medical appointments, many women often keep the reality of the level of sexual pain or discomfort from their partners (whether they are new partners or longtime partners or spouses). Omission in the realms of sexuality and intimacy is a mechanism women resort to in order to feel more accepted by a partner, and society out of fear of rejection, shame, and exclusion. Recent research cited in Michael Castlemen’s recent post also illustrates that it is a reaction to a patriarchal society that privileges men’s sexual pleasure over women’s desire and pleasure. Women reported that the reason they don’t tell their partners about their pain is that they felt “they should subordinate their erotic pleasure to their men's."

In fact, studies show that male partners of women who experience sexual pain are also deeply affected by their own shame when they are aware of the pain. In a recent study published in the Journal of Pain researching women with vulvodynia and their partners, women experienced greater pain when they also reported pain-related shame, while their partners experienced distress when they felt shame related to the pain they were causing their partner through sexual activity. On days they had sexual activity both partners reported greater levels of sexual distress. The authors of the study state: “Qualitative studies have reported that many of them feel inadequate, are apprehensive to speak about their pain, and fear this condition spells the end of their romantic relationship.”

How Can Sex Therapists Help Women and Their Male Partners?

As a systemic sex therapist, I consider the reach and power of a woman’s genital pain, the impact on her partner, and their relationship. It is critical for a sex therapist to first validate and empathize with the woman’s pain since most women have been made to feel embarrassed, like a complainer, or at times even like a hypochondriac. To uncover the source, experience, and history of the pain, the sex therapist should conduct a thorough sexual status and history assessment. (The Center for Love and Sex offers two recorded webinars on these interventions for medical professionals including therapists, sex therapists, pelvic floor physical therapists, and doctors.) But then they also need to conduct assessments of her partner.

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Frequently a woman in a committed sexual relationship (in the cases I provide here, the partner is male, though this is not always the case), the vulvar pain also has an effect on a man’s sexual functioning. Male partners, feeling guilty for causing pain in their partner during penetrative vaginal sex, may experience erectile dysfunction, uncontrolled ejaculation, or low desire. It is important for women to seek help not only on their own but with their partner as well.

The research cited above, focusing on couples where one partner is suffering from sexual pain provides a strong argument for therapists to work with both partners in couples systemic sex therapy. Within this type of couples sex therapy, it’s critical for sex therapists to:

1. Provide sex education about vulvodynia to both partners so they understand that this is a medical condition and no one’s fault.
2. Refer the woman suffering from pain to a well-trained sexual health medical professional able to diagnose and treat vulvodynia and GPPPD.
3. Explain how the entire couple's system has been impacted by the disorder.
4. Encourage the couple to use the therapy space to address both partners’ feelings of shame, anxiety, and sense of brokenness by giving them hope that these conditions can be treated, and that their reactions are understandable.
5. Outline a treatment plan to work on the pain treatment, their couple communication, and sexual alternatives while the Vulvodynia is being treated.
6. Teach them mindfulness techniques in order for them to become more relaxed and embodied and focused on giving and receiving sexual pleasure. There is a whole body of research and a recent book written by Lori Brotto showing the benefits of MBSR (Mindfulness-Based Stress Reduction) for women suffering from sexual pain.
7. Advocate and support women as they work with allied health care professionals.

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Creating a Holistic Systems-Oriented Medical Team to Help a Woman and the Couple

In the second of CLS’s webinars on sexual pain, co-presented with Pelvic Floor Physical Therapist Amy Stein — “The Collaborative Clinical Care Model Between Therapists and Pelvic Floor Physical Therapists” — a case example was presented of a client (all identifying information was removed) experiencing severe genital pain who described feeling like a freak amongst her sexually active college peers. Another woman described a breakup with a boyfriend, suspecting the cause to be her pain during sex, and consequent lack of sex. In another example, a high-achieving professional woman worried she would lose her supportive fiancé when he started business school. In almost all cases, these women felt extremely isolated, anxious, embarrassed, and lonely in their pain.

Silence about one’s pain, shame, and distress create a vicious cycle of communication and intimacy breakdowns which can be relieved by excellent communication skills and having a team. The system around a woman in pain--her gynecologist, therapist, physical therapist, sex therapist, and her partner(s)must all work holistically to treat vulvodynia and sexual pain. Sex therapists are trained to create and coordinate care among all these providers and to encourage women to speak authentically about the sexual pain to their sex therapist, their medical providers, and their partner.