Vulvodynia: Five Years In the Fire
We had planned to go to an amusement park the day I got the first infection. We still went, despite my discomfort as we stood in line for hours to ride the big coasters, and I continued thinking it was just a simple yeast infection. What would I have possibly thought if I could have known then, in my early twenties, not quite five-months into marriage, that what I was feeling would only worsen over the coming years, with no known cause, resistant to every treatment medical doctors could throw at it?
When I went to the GYN, she too thought it was just a yeast infection—until the pain simply didn’t resolve after multiple treatments. I remember her saying, off-handedly, the only other thing she could think of was taking me off the birth control pill I’d started a few months before marriage, because it was the only thing new, that she knew of, introduced to my body before my symptoms started; but it was forgotten. Her level of difficulty diagnosing my problem became clear the day she had me come in for a skin biopsy, after all other avenues proved unfruitful. (She even had gone the route of quizzing me about my marriage and if I felt “safe”—suggesting that my pain was psychosomatic, that my body was creating an excuse to keep my husband at bay.)
Apprehensively awaiting the biopsy, I braced myself for the described pain of the procedure as the GYN prepped, checked and rechecked her instruments.
“Never mind. Get dressed,” I heard her weary voice finally utter as her hands fell to her lap. “There’s nothing here to biopsy.” My skin looked completely normal and healthy, as did my cultures. Next she sent me to a reproductive oncologist, out of desperation, and he referred me to university women’s clinic in the next state.
Meanwhile, I was trying to survive a world where every chair and couch felt like the surface of an oven burner. I easily became depressed in those first months, giving up all my hobbies—painting, writing, crafting—because I couldn’t sit. Not to mention the toll my pain-induced celibacy had on my young marriage. I struggled with graduate school, standing at the back of classes, completing homework by lying on my stomach, even dragging the computer keyboard to the floor to type my papers.
Anticipating my university clinic appointment, I tried to balance hope with wise reservation. Many times already I’d let my hopes rise that the next approach would solve the mystery, and my husband and I subsequently crashed each time hopes were dashed in the reality of a void of answers.
At the university, a typical-looking white-robed doctor looked me in the eye and finished my sentences before I began them. Performing what I now know is the only standard test for such a condition, he used a Q-tip to gently apply pressure on different sections of vulvar skin, asking me when I felt pain. He then drew a diagram on the crinkly paper covering the exam table, explaining how my nerves were damaged, capable of feeling only pain, and how using tricyclic antidepressants could help by blocking the nerves’ ability to deliver the pain message to my brain. And he gave the condition a name. “Vulvodynia,” he said. The forlorn, careworn bird of hope caged so aprehensively in my chest soared. I flew the two-hour drive home. A name meant recognition. Affirmation. Being found. Understood. I wasn’t crazy.
Estimates suggest that between 200,000 to 6 million women suffer from this condition, and can get it at any age, though not all doctors even know of its existence. Treatment for the chronic pain was started immediately, and the result at first blush was amazing. We felt like we were given my life back: there was a future, for me, for us, other than donut pillows, frozen teabag pantiliners and celibacy. I could sit in restaurants again, movie theatres, church, and for my husband’s favorite pastimes of long drives and spectator sports.
However, after some time, higher and higher doses of the pain medication became necessary, until the pain gradually rebuilt, almost non-responsive to medication. I was given prescription Lidocaine—yes, the same topical analgesic given for stitches—to numb myself up when I just couldn’t take the pain. Then we stumbled onto an incongruous truth—I experienced fewer symptoms when being treated for yeast infection, though my cultures did not show a yeast imbalance. I began taking Diflucan weekly or daily, whatever seemed needed. This did help some, but it’s a harsh medication for daily and weekly consumption.
Eventually, I realized that vulvodynia meant nothing more than “pain of the vulva.” I had been diagnosed with merely a Latin translation of my symptoms. Suddenly, it felt like a slap in the face. I told a doctor I had pain, and he simply parroted back, in a different language, “you have pain.” And no more. At first, I had been relieved just to have my pain taken seriously, but after another year, learning that otherwise there was little doctors could offer, depression returned.
I was twenty-five years old, but felt like I was eighty-two the way my health condition increasingly kept me home and made holding a job difficult, as a secondary diagnosis was given: irritable bowel syndrome. Another drug was recommended. I learned to replace my healthful diet rich in produce with chocolate cupcakes and junk food, because the junk seemed to keep me from experiencing the awful abdominal attacks that I was sure labor contractions didn’t have much on. (Years later I learned that this was all a known side-effect of the tricyclic antidepressants I was using to manage pain.)
Two years had passed already since that day my family went to the amusement park. I felt like a shadow of the person I used to be, my identity stripped as my health issues kept me from the things I loved to do, and from being the woman my husband fell in love with: optimistic, enthusiastic, ambitious, creative. Now each day I was exhausted, by malnutrition, pain and the disappointment and guilt I bore.
Then three more years passed, as we bought and sold two houses and moved out of state twice. I quit taking the pain medication, and the IBS issues disappeared. I learned also that the fine print on birth control pill packages warns that they deplete the body of B vitamins, lowering immunity to whatever infectious germ comes along, and leading to yeast infections; I never took another hormonal contraceptive.
In each new place, I tried to find doctors who even had heard of vulvodynia, with little luck. Things grew more desperate, to the point where my marriage stress was causing me psychosomatic symptoms. After surviving a marriage crisis and choosing “for worse” with eyes wide open, we then looked into everything we could find—natural cures, products on the internet with glowing testimonials—herbal yeast cleanses, Asian powders, dilation kits for vestibulitis, a months-long diet of no sugar, fruits, grains and dairy. Any reprieve, just like with the pain medication, was short-lived.
I began looking into driving hours away for biofeedback therapy to strengthen my pelvic floor, and I wanted to get pregnant after reading a magazine article about a woman who saw her symptoms disappear after a vaginal delivery. (Though knowing that getting pregnant in and of itself might prove to be quite difficult.)
I got my wish. I delivered my first child, and through it found the path to recovery—but not the way I expected. It turned out to be more of a baptism by fire kind of salvation. After rounds of antibiotics for the delivery, the first clinically verifiable yeast infection for years plagued me. It resisted treatment for weeks, then months. The never-resolved nightmare seemed to double back to its beginning, with the pain and the stakes ratcheted even higher.
While I tried to care for my newborn with a blow-torch between my legs, yeast sprouted in his mouth, blooming like bunches of Queen Anne’s lace. After more weeks of ineffective treatment for us, the yeast broke through our skin in sour smelling rashes, and infected my breasts. I tried the natural remedy of gentian violet, and was sunk when that too failed. Pushed even further than what I’d previously thought was a dire situation, I tried an avenue I knew existed only theoretically. A relative who was a nursing professor referred me to naturopathic physician, because I “needed someone who was holistic and able to see the whole picture.” (And, it seemed to me, both our doctors sighed relief that I was looking elsewhere for help.)
I remember sitting gingerly in her office, baby lying in my exhausted, rash-covered arms, as the ND started her “magic,” tapping my son’s acupressure points, then asking his body what was going on inside, diagnosing with applied kinesiology techniques, and then moving on to me. I expected someone who acted like the kind of doctor I was familiar with. Part of me wanted to pick up my baby and run from this unfamiliar approach I couldn’t wrap my head around—but I was too exhausted. Desperation carved enough space in my doubting, skeptical intellect for me to entertain taking the herbal and natural remedies she suggested.
She diagnosed not only Candida yeast which I knew I had, but also another form of yeast (not recognized by traditional Western medicine) that was systemic, present in my very cells all over my body. Through gritted teeth, I told myself to follow her counsel to the letter—what else did I have to turn back to?
At first, I felt cheated like every other time something didn’t work after promises of hope. My symptoms flared after some time on the new treatment regimen, and part of me didn’t believe what the ND said, that the yeast was just fighting for its life.
I try to remember that treatment wasn’t instant; healing naturally, holistically, and completely, takes time. My baby too healed slowly as my ND didn’t even want to give a baby so young any yeast cleansing products, but heal he did. She recommended probiotic powder and that I wash his mouth with a pH balancing solution multiple times a day.
In a matter of weeks, the rashes, the breast pain, the burning sensations, were all gone. In my follow-up appointment, I confided that all of my acute symptoms were gone, but a deep pain still existed that I felt only on contact, feeling like a knife slicing my insides to shreds.
In the next “layer,” as the ND called it, now that the top layer of the yeast was peeled away, she saw another cause for my pain which also lived in the realm of “not recognized by Western medicine.” She explained that my body revealed nerve damage (and then I remembered having been told that years before, diagrammed on crinkly exam-table paper…). Bacteria on the nerves themselves had attracted certain minerals, forming hard, crunchy crystals, which is why I felt such cutting, slicing pain. I took the recommended products to rid the bacteria and dissolve the mineral deposits, and in a handful of months from when I met that ND, my more-than-five-year struggle was over.
I am so free of all the features of vulvodynia that ruled my life for so long that I often cannot even remember what it was like—until someone from an online support group contacts me, after seeing my post about being cured, telling me something like, “I work eight hours at a desk, standing on my knees or squatting.” Or, “Frozen vegetables aren’t for eating—I wear them to try to block out the pain.” And, “Sex with my husband? What’s sex?” Symptom-free now for three years, I sometimes wonder if it was but a nightmare that for five of the eight years of my marriage I was crippled by this undiagnosed condition. I have my life back, and my identity, and healing has been so complete it’s almost erased my memory.