Cancer vs. Chronic Pain
When it comes to my health, I can present myself as either a cancer survivor or as a chronic pain patient. Both of these titles are true, but each conjure up radically different images in people’s minds. When I say cancer survivor, people immediately get serious as they picture a person going through one of the “worst medical experiences possible,” and they believe that I need and deserve any accommodations that I ask for. However, if I say that I have a chronic pain condition, I get the opposite reaction, and, immediately, people become suspicious, doubting whether my pain is all that bad. Because I don’t look “sick,” they question whether my diagnosis is even real.
When I was diagnosed with Hodgkin's lymphoma, I fell into a time machine and was transported 100 years in the future. There I was scanned by million-dollar medical devices, which pinpointed my cancer to be biopsied and tested and further scanned by precision processes that I can’t begin to understand. I saw beautiful color images of exactly what was killing me.
I was never alone in my fight. I had the respect of the world for continuing on with my normal life while in treatment, and people ran races to fund research in my name. I had a dedicated team of medical professionals who knew precisely what was wrong with me: the size and shape of my tumor, where it was, how fast it was moving, and what multi-step treatment plan would have a 90% chance of curing me. They could prepare me for every step of what I was going through and could point to double-blind peer-reviewed scientific studies to justify my treatment regimen.
Everything was quantifiable. I knew I had X number of days to do chemo and X number of days of radiation. And if I completed these treatments, I had a 90% chance that my cancer would would be cured. My excellent team of nurses and doctors frequently asked how I was feeling and monitored my comfort. I’m amazed at what I could put up with when I knew that it was for a good purpose — and when it might end.
Because the universe loves irony, the week after doctors declared I was cancer free I experienced my first flare of unexplained vulvar/vaginal pain. I found myself once again in a doctor’s office trying to find answers for what was wrong with me. I felt like I was shoved back into that time machine, but this time I was transported 100 years into the past. I had mysterious symptoms that seemed to have no true cause. I went through a slew of doctors who repeatedly misdiagnosed me: first with chronic yeast infections, then genital warts, then urinary tract infections, and other diseases that I can’t remember now.
When I found my way to a clinic specializing in vulvar/vaginal issues, I finally got the diagnosis of vulvodynia, a fancy term for general unexplained vulva pain. It comes in a few different varieties, including mine, vestibulitis, which is pain specifically around the vaginal opening that is triggered primarily when touched. Vulvodynia is a diagnosis of exclusion — it’s what you get when no other diagnosis fits.
Unlike when I was diagnosed with cancer, there were no more futuristic diagnostic scanning devices this time. Vulvodynia is difficult to diagnose because there are so few quantifiable physical symptoms, so the best diagnostic test for it is the Q-tip test. This “test” consists of a doctor touching a Q-tip to different parts of the vulva and asking the patient to rate their pain. But with my chronic pain, I’m chasing phantoms because there is rarely any physical evidence of what I’m experiencing. My pain fluctuates from day to day; some days I feel normal, other days I feel terrible.
Unlike many other women, I was fortunate to have most doctors believe I was in pain. I have talked to many women who have had their experiences of pain questioned, especially when that pain is vaginal. The majority are told by doctors at some point that the pain is all their heads. If they would relax and not be so uptight then the pain during sex would just go away. The pervasive acceptance of pain as a natural consequence of sex for women is widespread in our culture, but it is especially disappointing to encounter when dealing with doctors. Many doctors have never even heard of vulvodynia, so when they can’t find anything physically wrong with women complaining of vaginal pain, they are open to speculate that the cause must be mental.
Incorrect diagnoses and the lack of effective treatments are the result of pain science being relatively new and poorly studied combined with female health also being poorly and under- studied. Because no one knows what causes vulvodynia, treatments like topical lidocaine, steroids, Cymbalta, Lyrica, and other pain relievers can only help mask the pain, not root out its real cause. Most “pain” drugs were never even meant to be used for pain relief. The majority were originally antidepressants or anti-seizure medications. Pain reduction is usually a side effect, which means that there is far less medical research to back up the claims of efficacy. Once when I was receiving an lidocaine IV treatment, my pain doctor explicitly told me that they had no idea why this treatment worked. In order to evaluate whether a treatment is working in the long term, I have to keep a daily pain diary where I rate my pain, a time-consuming and annoying process. I long for the days that my doctor could just scan me and tell me how big my tumor was.
There is also a larger culture of silence around female specific pain. Historic taboos surrounding female sexuality makes directly dealing with women’s bodies and gynecological disorders difficult even today. (You’re not supposed to talk about your vagina in public!) Because I don’t look disabled but need to use a mobility device, people frequently ask, “What’s wrong you?” Even if people mean well, it’s not a great feeling to have to justify my illness. I would usually lie about my pain because the minute I would explain what vulvodynia is they would naturally picture my vagina – which is uncomfortable for me and them. The reluctance to talk frankly about women’s bodies, especially their genitals, is making it much harder for women’s health startups to raise money for studying female specific issues.
This culture of silence around women’s bodies plays into a larger pattern where the field of medicine routinely overlooks women's medicine. Even though the federal government mandated that women and minorities must be included clinical trials in 1993, women are frequently underrepresented in large studies, while their results, based predominantly on white male bodies, are often accepted as the standard for all people. When women report pain, studies show that they are more often given less pain relief medication than men. This is intricately tied to a broader culture that undervalues women's experiences.
In my particular experience, having cancer was easier than having a female pain condition. I had a treatable form of cancer for about one year; I’ve had vulvodynia and other chronic pain conditions for over a decade now and will likely have some form of it for the rest of my life. If you asked which was easier 30 years ago, the answer would be obvious because I would’ve died from Hodgkin’s lymphoma, proof that with the application of time, research, and money medical science can do amazing things. But part of the problem is that time, research, and money needs to be poured into studying chronic pain too, regardless of where it manifests in the body, or in whose body. Where medical science is lacking, chronic pain patients need to band together and loudly demand that more research be done.
For those of us with specific “embarrassing” pain conditions like vulvodynia, we need to be open and vocal about our illness to raise the public consciousness about the problem. Even though being vocal about my condition can be uncomfortable for me and opens the door for more people to question my experience, I’m making an effort to identify myself more as a chronic pain patient with vulvodynia than as a cancer survivor. Being honest about what’s going wrong with my body is my first step toward raising vulvodynia awareness. I know from looking at the success of the movements to raise awareness about breast cancer and prostate cancer that being uncomfortable is a small price to pay for advancement in curing my illness.
The most heartening effect of my resolution to be more open about having vulvodynia is that I found so many other women who are also suffering from gynecological pain. I’ve even had two close friends who I never knew had vulvodynia disclose their issues to me only after I started to be open. Now instead of feeling isolated in our pain, we can share treatments, coping mechanisms, and support each other. I am a woman with vulvodynia, and yes, it feels uncomfortable to say it! But I can live with it — after everything I’ve gone through, I know I can live with anything.
