The Need for Better Responses to Vulvar Pain

With Rebekah Shallcross, PhD, and Pamela Morrison Wiles, DPT, BCA-PMD

Some women find the healthcare system dismissive of vulvodynia, a condition that causes pain in the vulvar region, according to a recent literature review.1 The research team, led by Rebekah Shallcross, PhD, of the University of Liverpool in the United Kingdom, also discovered that women with vulvodynia typically experience social and environmental stresses, as well as feelings of shame, that can negatively impact their willingness to seek and/or comply with treatment.

The Extent of the Problem

Up to 16% of women in the United states experience vulvodynia at some point in their lifetime, according to the National Vulvodynia Association (NVA).2 Yet, stated the review authors, women seem to be falling through the cracks when it comes to addressing this condition—not just on a physical level, but also in terms of managing its psychosocial implications. The NVA describes a variety of current treatment modalities for vulvodynia, including oral and topical medications to block pain, pelvic floor muscle therapy, nerve blocks, neurostimulation, spinal infusion pumps, surgery, and complementary or alternative medicine options.

Why all the Hype? 

Shallcross, et al. identified several important themes that run through the literature. Each is described below.

Psychological implications: Vulvodynia presents vast psychological implications. Women with this condition face psychological distress that ranges from mild to severe in nature (in some cases requiring antidepressants) and includes poor self-esteem, fear, anxiety, frustration, guilt, shame, and depression. While the painful symptoms, which can prevent or hamper intercourse in some cases, represent one layer of the equation, some studies have revealed that real or perceived pressure on women to meet a certain sexual ideal also impacts how women feel about themselves when they are unable to engage in this area.

Provider communication: It is not uncommon for women to be uncomfortable or embarrassed when discussing vulvodynia symptoms with their physicians. This feeling may stem, at least in part, from societal taboos that exist around women talking about sex and therefore, females may feel it necessary to avoid the subject entirely. In addition, when women do share details with their doctors, some physicians may be dismissive of the symptoms. “Women felt they were patronized by medical professionals because of their gender, which is in keeping with previous literature detailing the paternalistic attitudes of doctors toward women,” Shallcross and her colleagues wrote. Some physicians also may prescribe treatment for women that, rather than addressing the symptoms, actually makes them worse, according to the review.

In addition, some physicians may believe the symptoms are in their female patients’ heads, which further adds to feelings of shame associated with this condition. Part of the problem seems to stem from a lack of understanding on what vulvodynia really is among physicians.1

Partner communication: Many women report difficulty in talking to their partners and peers about what they are experiencing. “Women described both interpersonal effects of vulvodynia (relationships with others) and intrapersonal effects of vulvodynia (relationship with themselves),” the study explained. 1 Current narratives around femininity and social mores may lead women with vulvodynia to hold themselves up to societal standards that may not fit their situation. This may cause some to withdraw from relationships (both romantic and social) and become more isolated. “The self-silencing that women engaged in rendered them socially isolated and thus unsupported, and as such, vulvodynia modified women’s relationships with other women, as well as their relationships with men,” the authors described.1

Addressing Vulvar Pain in Practice

Shallcross, et al. suggested that these challenges may be causing women more harm than good and urged the medical community to give more consideration to the issue.1 With “shame” as an underlying theme in the available research on vulvodynia, the authors recommended physicians develop interventions such as compassion-based approaches that may help to empower patients. Solution-focused therapy, cognitive behavioral therapies, and narrative therapy were also noted as possible approaches to helping patients manage the experiences associated with having vulvodynia. In addition, the authors suggested that creating more public, positive narratives around gender, sexuality, and vulvodynia may begin to change the way these issues are perceived in society.

The Male Partner

“The findings of this study are consistent with what I see in my practice,” confirmed Pamela Morrison Wiles, DPT, BCA-PMD, a pelvic pain expert at Pamela Morrison Physical Therapy in New York. She pointed out that an additional area worth paying attention to is “the high prevalence of the male sexual partner experiencing erectile dysfunction due to fear or concern of hurting the partner with vulvodynia. The couples’ prior sexual intimacy dynamic has been disturbed,” she explained

Dr. Morrison Wiles noted that her patients typically attend concomitant sex therapy, along with pelvic floor muscle physical therapy. Most benefit from this multidisciplinary approach, she said. “The majority of my patients have very understanding patient partners. My single patients who remain active in the dating scene during their medical care for vulvodynia have also succeeded in finding loving partners despite the sexual pain. This helps them avoid the feelings of despair and feelings of low self-esteem. Our patients are also encouraged to remain sexually active with non-penetrative sexual intimacy until the pain improves,” she added.

Putting the Research into Perspective

Dr. Morrison Wiles pointed out that the recommendations shared by the literature review authors could go a long way toward helping women suffering from vulvodynia. “Patients’ social constructs may affect their treatment because having a positive outlook can impact having a more positive treatment outcome. If women are focused on negative social constructs as described in the article, it can also cause many negative emotions. These constant negative emotions can facilitate an upregulated sympathetic nervous system known as windup, which can cause a persistent state of pain,” she said.

The good news, however, is that the benefits of having a positive outlook could extend beyond vulvodynia to address other pelvic-pain related diagnoses. “Breaking the pain cycle is of key importance in treating any chronic pelvic pain issue,” she stressed.

According to Dr. Shallcross, “Much more research into vulvodynia is needed, with particular attention paid to the role of the medical model and how women’s experiences can be improved in order to improve outcome. Further, whilst a multidisciplinary approach seems likely to be most effective, further research into treatment options for the physical and psychological implications of vulvodynia is needed to ensure women are able to receive reliable evidence-based treatment.”

Also featured in this special report on Pain Care & Research in Women

• Case Study: Neuropathic Pelvic Pain Caused by Endometriosis
• Challenges in Responding to Vulvodynia
• MSK Pain and Insomnia in the Post-Menopausal Woman

• Commentaries on the State of Pain in Women, and of Women in Pain Practice, featuring: ACOG’s Katherine W. McHugh, MD, the Society for Women’s Health Research Amy M. Miller, PhD, and Johns Hopkins Medicine’s Tina L. Doshi, MD.