Taking the Taboo Out of My Chronic Pain

Photo by Sarah Whiting

I am a 23-year-old dancer, singer, cook, and reader. I have a feisty and loveable orange cat named Olly. I adore sushi, candles, rain, and heart-to-heart chats.

I graduated from Hamline University with a sociology major and nonprofit management minor, and I’m currently studying at St. Catherine’s for my masters in library and information science. I got a Teach English as a Foreign Language certificate so I could teach abroad. I work at Women Against Military Madness because I believe in trying to alleviate the suffering of others, even as I suffer with chronic pain from a little-known condition with no cure. 

Chronic Pain

Vulvodynia is an umbrella term for vulvar and pelvic pain. There is no scientifically proven cause or cure for the condition, but each patient has their own hunches as to what caused their individual case. This can include sexual trauma, allergies, past vaginal infections, hormonal problems, fibromyalgia, and injury to the nerves surrounding the vulvar region. Many report the pain intensifies while on birth control pills and before or during periods. 

It usually involves a burning, stinging, itching, and/or raw sensation in the vulva that is not caused by a definitively testable illness, such as a skin disease, yeast infection, or sexually transmitted infection. It depends on the person, but vulvodynia can result in pain with sex and orgasm, or in wearing certain clothing like thongs or tight pants, and even simply walking, sitting, and exercising. 

The medical industry seems to know little about it. That means there is no foolproof solution that works for all cases. My specialist said treatment has a 33 percent chance of success at best. 

The Roots

What seems to unify all the causes of vulvodynia is that there is some sort of trauma or abnormality that induces it. It is not a sexually transmitted infection and it is not contagious. 

After finishing a treatment for a yeast infection in January 2017, my symptoms of itching, burning, and tingling didn’t go away. This is where my grueling nine-month diagnosis process began. 

I worked with many doctors, midwives, and gynecologists, and eventually went to Mayo Clinic in order to be diagnosed properly. Many women have trouble talking with their doctors about vaginal pain because it’s an intimate subject, but also because many women have been treated poorly by ill-informed doctors after they explain their pain. Women have been told that it’s a psychological problem, that they need to drink a glass of wine and relax, or that there isn’t anything that can be done about the pain because it’s a normal part of life. Yet pelvic and vulvar pain is not normal. 

Going Public 

This condition has turned my life upside down in the 1.5 years I’ve had it. However, because I’ve been able to speak about it to my family, friends, and coworkers, I’ve had my community support me through this struggle. 

I know there are women who haven’t shared their diagnosis with others because of the fear of stigma. They lose friends who don’t understand why their buddy isn’t as lighthearted, or is skipping bike rides and staying home. 

I refuse to feel shame or guilt for sharing my story just because my pain is in a part of the body that makes some people uncomfortable to talk about. If I had a condition in almost any other place, it would be societally acceptable to share, and I would have more support than I already do. 

The Impact

I used to date. Now I find it too tiring to have romantic partners. Having sex is painful as well. I loved dancing and exercising in college. I’ve stopped a lot of that due to pelvic pain. Some women can’t sit for long periods of time and some can’t work. 

After college I had planned to teach abroad. I applied for jobs in Japan and Korea, but my symptoms got worse and I abandoned my search. At this point, my dream is not possible. I wish to thrive if I worked abroad, and right now there are too many variables that could make a trip a nightmare. 

I tell people that vulvodynia and pelvic floor dysfunction is a multi-faceted health crisis that requires a holistic approach involving many practitioners, so that the mind, body, and spirit can heal. 

We all deserve to be heard, treated, and respected.