Master's Project Title:

The Vulvodynia Patient and Pregnancy: A Qualitative Study on Care Seeking Experiences and the Role of Pain Catastrophizing

MCH Student:

Nora Johnson

Date of Defense:

January 27, 2014


Background: Vulvodynia is a potentially debilitating chronic pain condition affecting the vulva (external genitalia) in women. The average age of onset for vulvar pain in these women is 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 qualitative methods to gain a deeper understanding of these experiences for women with vulvar pain.  Women were recruited from national advertisements endorsed by the leading vulvodynia advocacy foundation.  In-depth semi-structured telephone interviews by one trained interviewer were conducted with 18 individuals (8 pregnant and 10 postpartum women).

Results: Most of the women who participated in the study were not in a state of remission when trying to get pregnant, but rather had reached a point of stability with their symptoms, pain variability and coping mechanisms.  Women commonly had difficulty when seeking care for vulvar pain during pregnancy, due in part, to potential feelings of invalidation when interacting with providers prior to pregnancy; changes to the body experienced during pregnancy; a sense of hopelessness regarding their inability to engage in new or medication-based treatments during the pregnancy state; and the paucity of practitioners specializing in vulvar pain (an already small pool of individuals) and obstetrics.  Results suggest that coping mechanisms, pain variability and the lack of consistently effective treatments for the condition may affect decisions to start attempting pregnancy as well as decisions regarding the method of delivery.

Conclusions: Study participants’ described feelings about pain experience during pregnancy and delivery closely fit with a model of pain catastrophizing that incorporates rumination and magnification of pain, as well as a sense of helplessness to address the pain, which was all specific to the pregnancy and postpartum period.  Potential interventions to reduce patient anxiety related to the unknown future of their pain should be developed.