“You have to go through it and have your children”: reproductive experiences among women with vulvodynia

Nora S. Johnson, Eileen M. Harwood, Ruby H.N. Nguyen

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. 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. Three major themes were reported by our participants. Women described their reaction to pain as volatile at first, and, over time, more self-controlled, regardless of medical treatment; once the volatility became more stable and overall severity lessened, many women began planning for pregnancy. Techniques described by women to cope with pain around pregnancy included pain minimization, planning pregnancy-safe treatment and timing intercourse around ovulation. Regardless of the degree to which interaction with health care providers before pregnancy were positive, most participants developed mistrustful attitudes toward future dealings with health care systems and providers. Nearly all women described anxiety regarding how pregnancy may change pain symptoms, yet described being hopeful. Women described strategies regarding reproduction such as finding a personally acceptable level of pain before planning pregnancy, and a resilience that allowed them to achieve their reproductive goals despite pain and perceived lack of assistance from healthcare providers. Therefore, future research should assess the benefits of increased psychosocial support from partners and professionals who may assist in improving resilience.