Advice from Other Vulvodynia Sufferers
A University of Alberta study (2004) investigated the long term effects of vulvodynia on women’s lives. Among the survey’s questions, women were asked, “If you were asked to give advice to a young woman who’s just been told she has vulvodynia, what would you say?” (19) Their answers are below.
“Be strong, be patient, have hope.”
The most common recurring theme was the importance of personal strength in living with vulvodynia. Personal strength was defined as persistence in seeking pain relief and the courage to insist that others take your pain seriously. Almost every survey respondent said that newly diagnosed women “should never give up.” Many said that they acquired personal strength from the experience of having vulvodynia.
“Discuss with your provider whether or not a new treatment is right for you.”
The second most common theme was the importance of developing a supportive, but not unquestioning, relationship with a health care provider. Women advised finding a provider who respects your knowledge about your condition, answers your questions and is willing to discuss options with you. Some emphasized the need to establish a balance between relying on your own judgment and trusting your provider’s medical expertise.
“Become as informed as you can.”
Women suggested learning as much as possible about vulvodynia by reading NVA’s newsletters and recent medical journal articles. They emphasized the importance of learning about emerging treatments, keeping in mind that there is no ‘one size fits all’ treatment. Becoming informed about vulvodynia was also considered essential for building a satisfactory partnership with a provider.
“Communicate with other women who have vulvodynia so you don’t feel isolated.”
Many women identified ‘feeling alone’ as one of the greatest threats to their emotional well-being. They suggested speaking with other sufferers to lessen the isolation and share medical information.