The Chronic Pain Women Don’t Talk About
The summer of 2000 was supposed to be my best yet. I had passed my oral comprehensive exams for my Ph.D. and now only the dissertation stood between me and my dream of being a professor. I had just turned 30 and felt physically better than I had in a long time, except for a nasty cyst near my tailbone that had become inflamed through summer heat and sweat. I went to a doctor who prescribed me a round of Keflex (Cephalexin) to take care of it. “If it works,” she said, “then we won’t have to surgically remove it.”
It was enough of a threat that I finished the entire packet. On my final day, when I was out shopping, my ladybits suddenly felt itchy. Really really itchy. I thought maybe it was the July heat. I liked to blame the summer heat on most things — my depression, insomnia, lack of ambition. You name it. But by the time I got home, I knew something was terribly wrong. I yanked down my shorts and underwear and grabbed a mirror to find one labia swollen to twice the size of the other. I had the clown shoe version of a vagina.
Up until that point I had never had so much as a UTI or yeast infection.
I did have a two-night stand with a drummer that spring, and we had used protection for only one of those nights, which resulted in me taking the morning-after pill, and now, perhaps, attaining a latent STI. I searched the Web for symptoms and nothing came up about one-sided swelling. I bought some Monistat, hoping it was just a strange yeast infection.
The cream immediately burned my skin upon contact and only cold water brought relief. I didn’t know who to talk to about this bizarre condition. It was one thing to have something nameable: abnormal discharge, strange odor, rash, sores, warts. These were conditions my friends had talked about, but none had mentioned lopsided swelling, a lack of vaginal odor, and now a burning that rivaled hellfire. Given that the cyst on my tailbone had also refused to go away, my pain felt downright biblical.
I was a child of 1980’s evangelical purity culture, so God’s punishment wasn’t totally out of the question. That one night stand was also when I lost my virginity. I couldn’t tell if it was God or nature striking back, so I said a prayer and went to a primary care doctor a few days later. By that time, the swelling had gone down. My pap smear and HIV/STI test were all clear. The doctor said she could see no inflammation.
Yet inflammation was felt, even if it was not seen. Small cysts would form and disappear like phantoms, along with alternating itching and burning. I visited more doctors who told me the same thing — there was no physical damage which explained my symptoms. At times the pain radiated to different parts of my vagina, perineum and rectum. Exercise seemed to lessen the discomfort, at least for a while. I read that oatmeal baths could help lessen the itching. I spent many nights soaking in the tub, weeping and praying for healing, forgiveness, and for a clue to whatever had wrecked my body.
There was so little written about vulvar pain. Instead, I found chat boards where woman commiserated about their desperation. Many had tried injections, surgery, yoga, acupuncture, and numbing creams. We were desperate. Exhausted. Doctors had no explanation. We all felt broken. Meanwhile, the English department where I worked was getting ready to move to a new space, but our current building didn’t have air conditioning. The summer heat made the itching so unbearable I carried a jar of Vaseline to coat my skin. I didn’t know why the pain was worse some days and not others. By this point my entire pelvic region was in so much discomfort it hurt to sit or lie down in any position but on my side. I took Tylenol and Ambien to help me sleep at night.
I also stopped going to doctors for answers.
I had read that vulvar pain could be related to stress and depression. Was this related back to the sexual abuse I experienced as a child? I knew that stress made the pain worse, but I also suspected, even though I couldn’t prove it, that the Keflex had started this. My particular scent had disappeared, and I didn’t know why. I researched more. Some sites stated that guaifenesin or N-Acetyl Glucosamine might help with fibromyalgia and autoimmune inflammation. I didn’t have any joint pain, but I tried both with minimal, if any, noticeable results.
I still told no one. I felt so much shame about how my body was betraying me in such an intimate way. Rather than enjoying summer nights sipping on a cocktail, I sat in a hot bath to help drain the smaller cysts. I remembered days as only being painful or pain-free. I didn’t go out with my friends. I didn’t try to date. I felt hopeless. I kept looking for information. We couldn’t collectively be drowning in this misery while doctors sat by shaking their heads in disbelief.
By chance, I came across the work of Clive C. Solomons, a biomedical researcher based in Denver, Colorado. He suggested a link between high oxalate foods and vulvar pain and recommended a low oxalate diet. When I looked up what foods and drinks had high oxalate content, my heart immediately sank. Coffee, tea, chocolate, spinach, kale, berries, wheat and a host of other foods were all what I consumed on a daily basis.
If Dr. Solomons’ theory was correct, I had been triggering the symptoms in myself for the past few months.
For the next few weeks, I cut out as many foods as I could. I switched to rye bread. I stayed away from peanut butter and other staples I had come to rely on as a struggling graduate student. It was possible that calcium citrate could help, so I took supplements and drank up to a gallon of water a day. I was miserable. I was hungry. I was also ridiculously bloated from drinking that much water. But within two weeks, I noticed less pain. When I let myself have a small cup of coffee in the morning, I had a reaction within the hour, but if I drank water immediately afterward, the irritation was less.
It took six months to a year of following this diet to various degrees before I felt like I had regained my life. Drinking water seemed to help more than anything, and so I stopped any supplements. I started to have more pain-free days. I started drinking more coffee. I even indulged in a meal with oxalates and didn’t end the night crying in a bathtub. My normal vaginal odor returned.
I still didn’t tell anyone about my ordeal. I was taught that women are to be mysterious and desirable. Yet why did that mystery have to extend to me not understanding my own body? Why were so many of us in pain, and yet so little being done about it?
While BBC states that 16% of women, if not more, suffer from some form of vulvodynia, women’s pain is still consistently dismissed by doctors as being psychosomatic. This layering of shame, disbelief, and lack of a more public conversation keeps many women in silent suffering. My vulvar pain was not caused by stress. It began the day I finished a round of antibiotics. Keflex now lists vaginal itching and change in discharge among its possible side effects. The low oxalate diet, in moderation, help reset my body so that now I can eat anything again. This is not an argument against the use of antibiotics nor an endorsement of the diet, which has come under serious critique by doctors such as Jen Gunter, for its lack of medical study.
There are many different kinds of vulvar pain stemming from different causes, so there is no one “cure.” What chronic pain taught me is that I must listen to my body. What triggers me might not trigger someone else. I kept a food diary for months. I figured out what worked and what didn’t. I wrote this essay because enough friends have told me that they, too, suffer from vulvar pain and feel hopeless.
As women, we have been shamed into silence when talking about our bodies in certain ways.
We can complain about cramps and PMS. We can march with pussy hats and compare dildos with pride, but until we can share our stories concerning vulvar pain without judgment from doctors, partners, and friends, the road to hope and healing is still a lonely one. But we are not alone. We are not broken. And it’s time we raise our voices because we deserve to be seen, listened to, and believed.
