This paper continues an exploration into vulvodynia (unexplained vulval pain lasting three months or longer) carried out over the last decade. It focuses on pain and the ‘ambiguous between’, using vulvodynia as a specific example of an unbearable state of body/mind tension and pressure in a space of obscurity and doubt. Anecdote, theory and speculation intertwine in an illustration of the possibility of creative response at the junction of that which is unmentionable and that which must be articulated. The paper demonstrates the possibility of a choice of attitude toward, and relationship with, suffering being enacted. It also acknowledges and celebrates the impossibility of a complete and final understanding of the ambiguous between.
Dream, 7 November 2009
Going to do a forward roll/somersault. It is so long since I’ve done one! If I could just get started—but I can’t find/initiate that necessary moment of impetus/momentum. Would a backward roll be easier? No it’s the same—just have to find that push/impetus.
Before the procedure, events arise and resolve themselves gently. I have time to talk with Jack as he drives me to the hospital, to walk the leafy streets before I enter, to chat nervously with sedate nurses. But, as I lie passive on the stretcher, a needle being inserted in my hand—an unsuccessful attempt that shifts to my arm—abruptly, events speed. I feel my self contract as the nurse comments, ‘Narrow veins’; when I overhear one specialist say to another, ‘You can take this one if you like’. I struggle with the impulse to run.
How can I? Gowned figures move smoothly about me in practiced arcs. My body is as if lashed to the stretcher; a descending mask blocking speech, oblivion a locomotive thrusting relentlessly upon me. I am being told to keep my eyes open—I am falling from the edge of my being. I know there is a word I can summon as a talisman but, panicked, I can’t recall it. Convict, no ... Convicted, that’s it—and then the elusive word/feeling is gone, because I’m gone. But in the same moment, I’m back; an absent vulva, a dead foot and numb leg, buzzing buttocks, and the recollection—conviction.
Meaning wrenched sideways by three letters.
Have I embodied conviction, or is my lapse an omen, an articulation of that helpless, imprisoned moment?
The pudendal nerve block, suggested in order to clarify the cause of my vulvodynia or chronic vulval pain, was postponed several times before being carried out in November 2009. First, because my new ‘inside’ physio thought I was responding well to treatment, and then due to a urinary tract infection. The physical therapy and associated measures did help: I now had regular and satisfying bowel movements; had regained the ability to sit when urinating, and to urinate and defecate in one toilet visit; felt my pelvic floor and buttock muscles strengthening; reclaimed greater pleasure in sex.
My son and I moved into our new family home with Jack and his boys and I resumed writing. Pain increased incrementally, day by day. I had a familiar choice, it seemed: avoid sitting for the rest of my life, or consult specialists in a further effort to overcome this debility.
On the day before the medical procedure I walk the undulating block of my new home by the sea, my aging Jack Russell, Lila, still tugging at her lead. I am uneasy but resolute. I recall the recent appointment with my pain specialist, after sitting had re-invigorated my pain. I told him of my terror regarding medical intervention.
‘What are you scared of?’
‘I’m scared of being back to that pain I had in the first years with this, when I was seeing doctors who only made it worse and I could barely move.
‘I’m not sure if I could survive it again.’
He seemed to understand and, as we walked out of the consulting room, said, ‘You know, it’s been a lot of years since you took a risk with this. How about we take a leap of faith?’
I liked the ‘we’ and responded with a smile and ‘Okay’.
‘Moral strength,’ the specialist encouraged me.
A memory sparked, and I replied, ‘Moral fortitude,’ invoking the courageous nineteenth-century woman with vulval pain of whom her gynaecologist had said:
Notwithstanding all these outward involuntary evidences of physical suffering, she had the moral fortitude to hold herself on the couch, and implored me not to desist from my efforts if there was the least hope of finding out anything about her inexplicable condition. (Sims 1861: 357)
We continue to walk, Lila stopping to busily sniff and squirt, and despite my resolve, the fear regarding the impending nerve block rising from my belly, invading my thoughts. I remember my dream of several nights before, the struggle to move with ease, and that moment of impetus that I hadn’t quite been able to capture in my dream, or articulate on waking. Momentum is so lacking in my compromised life.
What is it that enables the passage from intention to action, from stasis to beneficent flow? I recall the backward dives I used effortlessly and thoughtlessly to perform into pools, and fearless airborne somersaults on my high school oval. The moment of resistance overcome; the singular grace captured in that irreversible commitment.
I have to find that miraculous mind/body moment, but it takes bravery, faith—no, that’s not quite it ... Ah, conviction.
I use ‘between’ as a noun in order to communicate my experience of a quality of consciousness, non-temporal in nature; a space from which creative dilemma and realisation issue. This ‘between’ has some equivalence with the ‘unconscious’ of psychoanalysis (Freud 1957), the ‘unconscious’ of analytical psychology (Jung 1969), and Julia Kristeva’s ‘semiotic’ (1984). By shifting preposition to noun, I also wish to infer the sensations of feeling torn, conflicted, squashed, and suspended ‘between’ incompatible elements. The between is, in my experience, surfeited with tension and pressure: if it is a space, it is also a state (of being). ‘Ambiguous’ signals the understanding that this state features obscurity and doubt. Its messiness characterises and potentially stimulates a creative response: the attempt to form or articulate meaning from chaos.
Ambiguity pervades creativity.
Further, ambiguity is characteristic of vulvodynia.
The difficulty and uncertainty of life with vulvodynia provides attitudinal choices in those affected, with intolerable confusion, despondency and frustration generating responses that range from psychic paralysis to creative engagement. Guided and shoved by bodily symptoms, dreams and serendipitous moments, I write my experience in essays that mix genres and cross disciplines, seeking an authentic form and practice for my disarray.
When I developed genital pain in 2000, there were no ready words to explain my disorder. I could have been the only woman in the world who had a raw and fathomless ache between her legs where her vulva should be. Puzzlement met me in friends, colleagues, GPs and gynaecologists.
My pain was a lacuna.
Knowledge has grown. Where there was absence, medical articles on vulval and sexual pain proliferate. It is now understood that around 16% of women experience some form of unexplained vulval pain—burning, knife-like or contact—lasting three months or longer, at some point in their life (Harlow & Stewart 2003). Incipient public interest and awareness is signalled when I browse popular magazines online (Binns 2011), turn on the TV (Channel 4 2009; Neighbour 2013; Tinker 2007; Wilkinson 2009), or listen to the radio (Browning 2013).
Diagnosis aids understanding. But specific diagnostic terms have remained slippery over the years, eluding certainty, as the name that best describes vulval pain continues to evolve. ‘Vulvodynia’, applied to me many months after its onset, is merely a descriptor.
Now, the International Society for the Study of Vulvovaginal Disease describes two main forms of vulvodynia, localised and generalised, and distinguishes between provoked and unprovoked symptoms (ISSVD 2010).
In localised vulvodynia pain is restricted to one part of the vulva; the clitoris (clitorodynia), for instance, or the opening to the vagina, the vestibule (vestibulodynia). Vestibulodynia was known as vulval/vulvar vestibulitis, when I was finally diagnosed. Touch or pressure at the opening to my vagina was a searing knife, and a slowly subsiding ache.
Generalised vulvodynia is characterised by constant or intermittent spontaneous pain over the whole vulva. It was known as dysaesthetic vulvodynia in 2000, though I found the term independent of my doctors. Pain stretched, saddle-like, down my inner thighs and toward my anus. I dreaded toilet visits, and the excruciating hurt of sitting and walking.
Vulval pain emanates from anatomy inadequately understood and traditionally private: flanked by legs and genital lips; placed at the meeting point of multiple bodily systems; describing a gate to moist inner darkness. It is a site that is nebulous, usually defined through sensation rather than vision, and associated with pleasure not pain. My interaction with over one hundred women with vulvodynia, and indirect connection with countless more through the internet, indicates that women are generally unwilling to admit to the presence of the disorder in their lives. They are gagged by shame and embarrassment.
There are, as yet, no definitive answers to the questions of vulvodynia: what causes it; why does it become a chronic condition; how can it be cured? Nor is vulvodynia always diagnosed promptly, or neatly contained within its subtypes (Edwards 2004). Nevertheless, in contrast to the absence of medical story of the first half of the twentieth century, and the misapprehension of vulval pain as emanating from psychological pathology from the 1970s to the 1990s, a complex medical narrative is painstakingly emerging (see The Journal of Reproductive Medicine from 1984).
As is the case with other persistent pain states, the nervous system—and especially the central nervous system (CNS)—may be implicated (Zhang et al 2011). As we knock at the door of understanding regarding the brain, a marvellous ambiguity invites us in.
What constitutes pain?
The International Association for the Study of Pain defines pain as necessarily unpleasant: ‘Experiences which resemble pain but are not unpleasant, e.g., pricking, should not be called pain’ (IASP 2012). But as Eula Biss notes in her lyric essay, ‘The Pain Scale’:
A nasty itch [...] can be much more excruciating than a paper cut, which is also mild pain. Digging at an itch until it bleeds and is transformed into pure pain can bring a kind of relief. (2005: 7)
What constitutes pleasure?
Are pain and pleasure as separable as they seem?
There is an indefinable neuronal/experiential tipping point between pleasure and pain. The intensity of pleasure at the itch, scratched, is transitory if the itch is pathological; evidence of the CNS gone haywire. What if the itch is so ferocious that you injure yourself in your attempts to relieve it? This is what happened to ‘M’ who, after developing a relentless post-shingles itch, scratched a hole in her skull and into her brain while asleep (Gawande 2008). Specialists increasingly recognise such phenomena as evidence of a ‘deranged sensor system’, an issue with the CNS (Gawande 2008). Treatment might be based upon manipulating our perceptions of the world, rather than lopping disordered peripheral nerves (Ramachandran & Blakeslee 1999).
If the continuum between pain and its absence is complicated and non-linear, a stab at the zero-to-ten pain scale more a measure of suffering than an objective evaluation, pleasure and pain might best be communicated through analogy and metaphor. Disorder finds form in an artistic manoeuvre: ‘a kind of second birth’ (Kristeva 1984: 70).
In the first half-decade of my life with vulvodynia, medical appointments constituted innumerable pokes at my vulva with cotton buds, as investigators pressed pre-determined points on the vestibule, asking, ‘And now? And now?’ In between jolting on the gynaecology bench and restraining myself from shouting or slapping, I floundered between one and nine. How could a number correlate with this sensation? How might I convince the prodder that intense vulval searing was usually delayed, arriving in bed at night, or as I drove, legs clenched, the next day? Far more satisfying and accurate are the images and ideas that arise spontaneously: ‘it’s like alcohol burning my throat, but in my vagina’; ‘it feels like paper tearing’; ‘it’s like a knife thrust up and into my core’.
‘Pain’ as a descriptor is utterly inadequate. How do I compare my genital pain with the pain of another woman with vulvodynia? ‘Burning’ and ‘knife-like’ may be words chosen by women to describe their pain but (Harlow & Stewart 2003), even if we use the same descriptors, we cannot know if the quality or intensity of our pain is comparable. Nor can we know how pain sits in the lives of the other or the inner narrative we each shape to make sense of nonsense. The pain is shifting and changing, and so is our ability to secure and describe it in ways other ‘normal’ people might feel or understand.
In the world of vulvodynia, sexual arousal and caress cause the fine and wandering line between pleasure and pain to glow neon.
For four years, Jack and I do not have intercourse, as I wait for my vulva to ‘heal’. I keep my hands, his hands and mouth, away from my genitals, learning quickly that, if arousal triggers increased pain, orgasm leads to incapacity—days of lying rigid in my bed. What was once pleasure is now unpleasure. But I will not stop the sexual dynamic that pervades our daily life or the playfulness through which it finds form. I cannot stop desiring Jack or hoping that, one day, our sex life will be as liberated as it was.
I teeter on the neon line.
In 2004 I appear in the Woman’s Day under the title ‘Sex IS TOO painful’ (Allison). Of the many photos taken of me in my sunny vegetable patch, the magazine chooses a picture of a woman looking brave under the circumstances, her expression more grimace than smile. I read:
Jo’s condition has also affected her relationship with her long-term partner.
‘Initially, we had a normal sexual relationship,’ she says. ‘But when the vulval pain developed, any attraction and arousal I felt increased the pain.
‘I was very worried about the impact this would have on us. Sometimes with this condition a relationship can fail if the partner takes it as a slight on his masculinity, as though it’s a reflection on him.
‘But my partner has been wonderful and has stayed consistently supportive.’
Later in the same year, through working with my pelvic muscles under the guidance of two specialists, Jack and I re-engage with intercourse. We are at first nervous; me scared of Jack and his body, he scared of hurting me. Gradually we overcome our hesitation and settle in to a somewhat circumscribed sex life.
Will we ever have intercourse that is not limited by consequence?
Does anyone have a sex life completely uncompromised?
At 51 I experience a burgeoning of my sexual self. Exotic fantasies storm the citadel of my barricaded genitals. I picture buying sex toys with Jack, or availing myself of the bodies of men who admire me when I walk. I’m not sure if it is a last gasp of my pre-menopausal biology, or the awakening of a self previously trampled by fear, but the sensuality is welcome. I feel large-breasted yet athletic, vigorous and pliable.
My fantasies are tempered by my disorder—worrier and warden.
The latex of sex toys will irritate my vulva.
Surrendering to the rhythmic thrust will hurt my vagina.
I cannot afford to feel indulgent. But desire shifts in me, nonetheless, thick and luscious.
Alone with Jack on the couch, lust calls. I hold my self still and listen. For so long passive, I am surprised by my voice: ‘I want sex’. I feel bold and scared. Such blatant acknowledgement of desire can surely only lead to punishment, to pain.
We go up to our bedroom and I allow myself to play with sex. Desire takes the upper hand and orders me, and Jack, around.
I am filling.
I am emptying.
I am lost in orgasm.
But, as the world regains focus, worried voices invade my languor.
My clitoris is buzzing—I’ve set off the nerves.
What if I get an infection?
Such has been my experience for over a decade.
So, when my body settles over the following days, my vulva slowly subsiding from bliss to contentment, I am relieved and freshly confident.
I hold my self tight against the wall at the head of my bed, hoping the Devil will not see me through the window above. He is coming.
I wake and tread a path along the shore. The gathering light evokes my dream. I say ‘Yes’ to the Devil and wonder.
Rating pain on a scale from zero to ten is flawed for other reasons apart from the fact that pain is subjective. Acute pain and chronic pain are like apples and oranges, one based on intensity, the other on duration. Most people experience one or the other. Like many others, though, I live a fruit salad. How do you measure pain that is sharp yet never-ending? How can we measure pain at all?
At my house in 2005, after a night of pizza and laughter with Jack, my sons and their cousins, I am distracted by a nagging, stabbing ache in my back. When almost everyone has left we remainder go to bed and I register what seems like escalating pain through the long, dark hours.
But I have lost confidence in my ability to gauge sensation. Maybe I am exaggerating this pain. If so, maybe my vulvodynia is not truly painful.
When I moan involuntarily, I wake Jack to drive me to hospital.
Over the following days, I am surprised how many people exclaim at the notorious pain of passing kidney stones; ‘I believe it’s even more painful than having a baby!’ I feel vindicated. The boring sensation made me yell, but it came, and then, it went. It was a challenge to which I could rise. I am left with one of the pebbles that I scooped from the hospital toilet and biannual appointments with an urologist—not endless affliction.
Unlike the passage of these rough stones, the pain of vulvodynia feels, at times, beyond my capacity. So now I know it is real. Now I think; maybe I am trying to be brave. Maybe that is what I must continue to choose to do.
Eula Biss notes, ‘The suffering of Hell is terrifying not because of any specific torture, but because it is eternal’ (2005: 19).
Does pain serve any purpose beyond the avoidance of that which causes it? How much is pain implicated in identity, and what would we be without it? Biss asks, ‘Does the absence of pain equal the absence of everything?’ (2005: 5).
In an account of the formation of the ego Sigmund Freud emphasised the subject’s own body: ‘the ego is first and foremost a bodily ego’ (1961: 26). More specifically, he used bodily pain as an example of the way in which we register a mental bodily image: ‘The way in which we gain new knowledge of our organs during painful illnesses is perhaps a model of the way by which in general we arrive at the idea of our body’ (1961: 25-26).
The bodily ego is developed from a mental projection of the sensations of our bodily organs and our body surface; it is the subject’s felt sense of her/his body, preceding an image or idea. Freud linked it with the cortical homunculus, or little man, whose distorted representation indicates areas of the brain associated with the sensation of specific body parts: it ‘stands on its head in the cortex, sticks up its heels, faces backwards and, as we know, has its speech-area on the left-hand side’ (1961: 26).
This body is fragmented and shifting.
Pain might act like a mirror in the way in which it reflects and constitutes a bodily ego. It is unlike a mirror in that the ego created is not based upon the anatomy of the whole body, or the evidence of sight, but upon the sensations of the body. Re-casting hysteria as a potentiality in all of us—not just women—Juliet Mitchell writes:
It seems to me that, contrary to an erotogenic zone, a hysterogenic zone, which is a painful zone, occurs where something has not happened, where one cannot have what one wants and the feelings are thus painful. (2000: 143)
The pain has resisted symbolisation and remains, clamouring. Following Mitchell, this pain is a signal, and a potential opportunity to rectify and remedy ego deficits.
Based upon Freud’s account of the formation of the bodily ego, it is clear that several bodies are here in question. There is the ‘real’ anatomical body, and there is the body that is in our mind; an experience of a body which is prompted by sensation—even pain—and implicated in primary ego formation: ‘the body is in the mind, but the brain is in the Body’ (Wilber 2000: 179). Through such a paradoxical concept, mind/body duality might be transcended.
Constant vulval pain affects me similarly, insisting as it does that mind and body are not separable, or reducible to a single entity, but are differing expressions of a whole entity. My research and writing are informed and driven by the sensation of bodily suffering and feelings of frustration and anger: the marking of pain on my body generates the marking of this page.
Does pain reflect and constitute me through unrelenting sensation? Am I forged and inscribed through physical pain? I do have a body; I am able to be represented. Why, then, do I still suffer?
If ‘suffering is the story we tell ourselves’ of pain (Biss 2005: 22), then victimhood is a chosen narrative. I might be lodged in this ambiguous between, unable to enact choice regarding pain or its absence, but I can choose the nature of the relationship I have with my disorder.
Is my vulvodynia tormentor or advisor, saboteur or guide, enemy or friend? Is our relationship characterised by paralysis or dynamism? Will I be at the mercy of a force beyond me, or will I debate with, listen to and challenge it?
Once, my pain kept me convict. I had no choice in a life that revolved around the chimera of its absence.
What is this stopping me from doing?
How can I recover?
Increasingly, I sense conviction. My symptoms persist, but suffering has ceded to meaningful engagement with life, based upon the specificities of my disorder. Like a marriage of hearts, the unwritten contract of my relationship with vulvodynia flexes and shifts.
Where am I being led?
I no longer shovel the soil of my past, eyes to the ground, compulsively raking its grains, sifting it to discover culpability. My inexplicable illness is not a neurotic replaying of my history, or the unfair, even malevolent, derailment of my present, but a drive toward wholeness and a creative process; immersion in a crucible presaging insight and renovation.
I glance at a horizon.
I would like to link pain and beauty but hesitate, not wanting to seem tactless or arrogant; not wishing to tempt fate. It is easy to idealise pain and suffering in times of their diminution. If life with vulvodynia now holds purpose, it is also true that meaning remains opaque. Uncertainty prickles and pokes, driving me to incessant creativity. This, I realise, is how my life is to be lived, hovering over the choices of how I relate to my vulval pain.
And if the pain were gone tomorrow?
I believe I will always live in this way.
The creativity of engaging with my vulvodynia is itself a process in which ambiguity is implicated. It finds form through essays that mingle anecdote, theory, memory, historical and medical research, reflexivity, speculation, bodily sensation and dreams:
Dream April 14, 2010
In a primary school. We hear a tsunami is coming. I am by myself in the back room & can’t see how close it is, but start deep breathing in preparation for the massive wave. When it hits, though, it is not as I expect; it is only about a foot high, & a solid mass of water that pushes against us. Still, we know it will rise so, leading a group of children, I head straight for the temple/monastery on the other side of the bay. It is a structure that rises high into the air & so I know we will be safe. I have always wanted to meet the elder/head there, & this could be an opportunity to do so. We are welcomed in by a nun & stay there over time. We gather apples from the orchard & help with other monastery chores. There is a suggestion of the possibility of meeting the Dalai Lama who, till that point, has been in the upper part of the temple. Something must be written in order for this to happen. But, as I sit with pad of paper for long periods of time, not a word will come to me. I go through emotions—a frustration, anger, sadness—until I realise this is exactly the point. Writing nothing is the thing.
In the midst of articulation, I assert the significance of not knowing.
Mystery lies at the core of vulvodynia. Its confused and shifting medical and societal narrative fragments understanding. The site of its manifestation blurs the margins between inside and outside. The features of its symptoms scratch at the border between psyche and soma. While we work the maze of vulvodynia through history, the disorder continues to attract labels that sound the mysterious weaving between mind and body, and silently implicate gender: nerves, vapours, neurosis, hysteria, somatisation.
Paradox characterises chronic pain. Why does it persist beyond the margins of organic damage? What possible biological purpose can pain uncoupled from injury serve? What is this sensation trying to say?
Obscurity is the register of pain, and pleasure. I cannot know yours, nor you, mine. How, then, can we communicate anything beyond ‘It hurts’? What words can we find to draw the threads of our communion together?
I cannot form a final understanding of this ineffable measure of my life.
In July of 2009 my youngest son and I move into the house built by Jack to live with him and his sons. In January of the following year Jack asks me to marry him and I reply ‘Yes’. In December, we prepare for the wedding.
Now Jack and I share lives with the tumultuous vicissitudes of the lives of our sons, but also, at our best, form a protective cove that calms our separate turbulences. I live with the sensation of Jack in the bricks, wood and glass with which I am surrounded. When I climb to our bedroom eyrie and look out through the nestled hues of green and blue I feel my belly settling, my shoulders dropping and opening, my mind slowing to an imperceptible rhythm, attuned to the cloistered space between breaths.
In the morning I walk above the shore of the Indian Ocean, Lila’s nails a companionable staccato, the ship sliding along the horizon a moving city. Just a long dive from the shore, dolphins curve slowly through a clear blue swell, and a bobbing shag dips, slick-black, down to a salty breakfast. On such morning walks, and when I wake at night, I hear the sea. It is sometimes placid but often heaves; a suspended hush—then the crash-swisshhh of waves tumbling sand.
How can a single moment be so empty, yet so full?
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