The Oppressor Unseen

A Google search for Vulvodynia yields two main results: the medical condition characterized by unexplained, chronic pain at the entrance to the vaginal canal and a “brutal death metal” band by the same name. As my yoga students can attest, I’m more of a fan of the singer-songwriter genre. That said, I understand why a band with songs such as “Lord of Plagues” and  “The Oppressor Unseen” may have chosen such an affliction to serve as their moniker. Delving more deeply, many of their song titles are vulgar and repulsive, and maybe they felt similarly about a pain condition so closely intertwined with one’s sexuality, one’s humanity.  On their website they explain that a “condition characterized by the feeling of burning acid on the vagina” seemed an appropriate introduction for their “murderous” metal. 

Huh.  I get what they’re saying.  I often compare vulvodynia to the feeling of red hots on my vagina, or skinning my perineum on the pavement.  To elicit a more visceral response, I liken it to what it might feel like were one to masturbate with sandpaper.   

I was diagnosed with vulvodynia in the fall of 2004.  In reality, in my reality, there’s a lot less shock and awe associated with the condition and a lot more endurance and a great deal of patience.  A lot of deep breathing and warm baths and ice packs and making it to the end of the day.  There is hope that this day will be the last day of the current flare up. A flare up can last days or years - the uncertainty as challenging and tortuous as the actual pain.    

Chronic pain. Is there a condition more vague and infuriating?  In its acute stages, pain is assumed to be caused by an issue, a problem. It is something to be fixed.  Pain is bad.  Even in circumstances when there is pain with purpose, like childbirth, or some sort of endurance sport, there is mental effort required to overcome the natural urge to resist.  To fight or to flee.  To exist, then, in a state of constant pain, or even discomfort, is really against the natural order of things.  Aside from the mental distress it often causes, our bodies fight it.  Muscles tense away from the pain and, mentally, we continue to look for a reason, long after it seems that there’s any possible reason for it.  Do I clench my pelvic floor?  Is it sugar? It’s definitely coffee and most certainly stress, except when it isn’t.  I think it’s because I chew gum.  

My tumultuous relationship with my vagina began in September 2004.  The pain seemingly started as a simple yeast infection and morphed into a months-long investigation until my diagnosis of vulvodynia in December of that same year.  My diagnosis was remarkably fast, all things considered.  Some women can go to many providers, over the course of many years before receiving an accurate diagnosis.  Some never do.  I am fortunate to live in a very medically-informed community, with a vast array of resources and a department at UNC hospital devoted to the study of pelvic pain conditions. Even so, I saw four doctors, was prescribed topical creams for a yeast infection and topical steroids for general vaginitis.  I had neither condition and, as such, the treatments were counter to my condition, serving to worsen it, rather than to assist in providing any relief. I was assessed for numerous vaginal skin conditions, and people took pictures of my vulva and poked at it with Q-tips.  Going through the closet in my guest room the other day, I found a list of the treatments I had attempted in the first few years following my diagnosis.  They cover a college ruled paper in my twentysomething writing.  In addition to the treatments mentioned above, a list of the measurements I have tested in an attempt to get some relief include (but are not limited to):

-      Lidocaine

-      Estrogen

-      Lidocaine/Estrogen combination cream

-      Vaginal dilators

-      A vibrator

-      Acupuncture

-      Chinese herbs (in both pill and liquid form)

-      Emotional Freedom therapy

-      A number of tricyclic antidepressants

-      Crisco

-      A number of anti-epileptic/neuropathic pain medications

-      Beta blockers

-      Vaginal valium

-      Craniosacral therapy

-      Mayan abdominal massage

-      Herbal concoctions from India

-      Hypnosis

-      Elimination diets

-      CBD oil

-      Perineal massage

-      Dry needling

-      Methadone  (Yes, methadone.  That was a fun prescription to pick up)

 I was told to avoid sex. I was told to have sex.  I’ve seen dermatologists, physical therapists, gynecologists, herbalists, naturopaths, and osteopaths.  Someone told me that I needed to recreate my birth experience (I’m still not sure whether it was my own or one or both of my children) to cure the apparent psychological trauma my body was manifesting.  

 Certain treatments would seem to work for a while.  I remember being particularly excited about one called “Acid Redux” – calcium pills made from the shells of oysters off the coast of Oregon.  (I think).  It appeared to coincide with a fairly long lapse in pain when those lapses were rare. I ordered a dozen bottles or so. When the oyster shell pills ran out, my pain didn’t come back.  Until it did. When I started taking the pills this time, Acid Redux didn’t manage to reduce anything.  The quest, and the pain, continued.  

I forget about my vagina when the burning pain isn’t present.  Shockingly, in times of remission, it’s difficult to even recall the vague torture that consumes me during one of my flare-ups.  But then one day, something switches, and I dive back in to the pain, and to the struggle to find some sort of answer to end it.  A magic pill?  Maybe.  Some dietary trigger?  I don’t know. It’s all consuming except that, like all chronic pain, it can’t be.  For the most part, I won’t allow this condition to rule.  My husband and my friends have seen me break down on several occasions (my husband might argue semantics and use the word “many”) but, for the most part, amidst the pain that ranges from irritating to unbearable, I bear it.  

 In yogic and meditation circles, there’s a story of a yogi who undergoes surgery without the use of any sort of anesthetic.  He uses his breath to calm his nervous system, to endure the seemingly unendurable pain of abdominal surgery.  Having had both a cesarean delivery and a vulvodynia, I’m pretty clear on which I would choose to endure without anesthesia.    That said, there’s a kind of marathon-like endurance required to be and breathe with pain over the course of years, rather than hours.  Yoga teaches us to move into our bodies, rather than avoiding them, and to use that physical awareness as a tool for connecting with the present.   When we tap into the present, it’s usually okay, but it’s not always pleasant.  But, what we perceive as pain is actually a multi-layered physical and emotional experience.  Pain, in isolation, is something that occurs in the present.  The mental and emotional experience of it – the stories that swirl around pain, the fear that the pain won’t subside – are not based in the present and they can add unnecessary layers of suffering.  

Penny Simkin, renowned childbirth educator, distinguishes between pain and suffering when discussing birth – “...the pain of labor might be defined as an unpleasant bodily sensation that one wishes to avoid or relieve. Suffering, however, is a distressing, psychological state that includes feelings of helplessness, fear, panic, loss of control, and aloneness. Suffering may or may not be associated with pain, and pain may or may not be associated with suffering." Pain is a physical experience.  It is uncomfortable, but it’s often the stories we tell ourselves about the pain that make it doubly challenging.  Admittedly, I certainly still get mentally carried away, but sitting with the pain as it manifests is markedly easier now than it was when I was first diagnosed.   Yoga and mindfulness have taught me to appreciate the impermanence of everything, including pain.  This awareness makes it easier to endure the present discomfort. 

Motherhood also serves as a constant reminder of impermanence and, as we all can attest, is its own endurance sport.  Vulvar pain isn’t something I would choose to add to the mix of the challenges of parenthood, but the obligations (and the joys) of parenthood remain, regardless of the state of my nether regions. And so, I tap into the reserves of strength that years of yoga and pain have helped provide. I live this life – with pain, yes, but with recognition that a great deal of good co-exists with it. In this moment, I’m grateful for all of it.