A Personal History of Pain
On fear, gender, and undiagnosable gynaecological problems
For the past decade or so, I have lived with intermittently debilitating pain and its consequences. From a young age I have been acutely aware that without warning or discernible reason, my body is capable of inflicting unpredictable bouts of suffering on to me with no cause evident to myself, those around me, or any medical professionals. I have collectively missed months of school and work, not due to period poverty, but due to period and uterine pain. I have, relatively speaking, all the resources in the world with which to deal with this, but very little helps. The problem is intrinsic, invisible, and elusive.
I have often found my pain hard to talk about. Maybe it’s some social stigma, or maybe it’s that I don’t want everyone all the time knowing what’s going on with my vagina and its various accoutrements. This isn’t to say I’m against talking about periods. I’m actually very much in favour of talking about periods. Talk about how they make you feel connected to your body and femininity and the moon or whatever if they do that for you. Talk about how they make you feel awful and how gross it is when you go to the bathroom and look back in the toilet bowl and see piss and shit and blood and clumps of stuff if you want to. These are all normal things and talking about them should be normal.
My problem is that talking about what happens to me during and even between periods isn’t normal because the stuff I’ve got going on is not normal. There’s a line somewhere between “that awkward moment when you forget your tampon” and “I hate when you try to go to the bathroom by yourself but pass out and your mom has to pick you up on the floor” and I’m firmly on the side of it that kills the vibe of most conversations. I know that this can sound like I also have a touch of not-like-other-girls syndrome and in my defence, most people do not experience the symptoms that I do.
On the other hand I know I am one of many people whose period causes them a myriad of unusually severe problems, and that my experience of being disbelieved, ignored, and neglected by doctors is shared by many people who menstruate. In general though, when I try to relate to other people who get periods conversationally, but when I ask things like “you ever get those weird cramps in the middle of the month that are so bad you can’t walk straight but you don’t bleed?” People usually respond with some variation of “no, maybe you should see a doctor.” I have! I have seen so many doctors! I have learned to distrust and resent most doctors due to how unhelpful they have been.
I’ve been on birth control for around a decade now, having been shuffled from one pill to the next as each of them fail to solve the problem, but terrified to go without it in case it’s been quelling some larger horror stored somewhere in my body. I still don’t know how much the mental health issues I’ve dealt with, my weight, my general temperament or the size of my breasts is down to the pills I’ve been on. It’s a pharmaceutical question mark over my adolescence and adulthood.
I’ve been prescribed painkillers and anti-inflammatories, had pints and pints of blood drawn, ambulances called, been told I might be anaemic or that I might have coeliac disease. I’ve been told I faint because I’m “just tall” (flattering, but unhelpful), been advised to take hot baths (that doctor became slightly annoyed when I told her I don’t live in a house with a bath), and had a surprise pelvic exam where the doctor did not remove their instruments from inside me when I said stop, as they had promised to do. I’ve had to push past much reluctance for every test you could think of and all of them came up with nothing. The large majority of the doctors I have seen are, if you were wondering, women.
It wasn’t until I was 22 that a doctor I saw once and never again remarked off-handedly that it sounded like I had “a bit of endometriosis.” When I asked her what she would suggest I do about that, she looked genuinely surprised, as if she had told me my star sign and not suggested a serious, but potentially treatable, medical diagnosis. I resented her for her indifference, as I have resented many doctors who have dismissed my concerns over the years. I am very familiar with the feeling of leaving a GP, fifty to seventy quid poorer (inflation, man), with nothing to show for it except an acknowledgement that, well, I’m a woman, and these things happen to women.
There is a widespread, almost religious disinterest in the why of gynaecological issues that I have come up against over and over. The vast majority of doctors have, at most, given me something to help cope with the pain, but expressed no interest in investigating if there might be some sort of, I don’t know, medical problem that’s causing it. If there is a problem, their responses seem to imply that it is my having a uterus in the first place. This is hardly my fault, and more importantly, hardly a real explanation. Let there be womb, and the fruit of it pain. So it is written. Are you fucking kidding me?
I don’t believe that suffering is righteous or noble. I think that if there is a way to avoid or prevent suffering, it is, within reason, good to try. One can understand, however, why people would want to project some kind of meaning onto the abjection of being victimised by your own body. Pain can make you noble, pain can make you pure, pain can make you good - if you can first make that pain noble and pure and good. It is not difficult to imagine a religious construct to explain this type of pain. It’s a divine flagellation, it’s invisible, internal stigmata, it’s something terrible happening in the centre of the centre, the place in the body where things are supposed to be born and life itself is made. Quick, someone call W.B. Yeats, the blood-dimmed tide is loosed all over my clean trousers! As my organs cramp and try to force their shedded insides out, the similarities to some kind of purification are not lost on me.
The urge to attach these sorts of meanings to pain is in part due to the fact that wombs and suffering are all over the judeo-christian traditions to which I’m broadly culturally adjacent. I’m sure most religions have their work cut out for them in explaining the assortment of questions that people have about birth and women and pain. Personally, from the ages of seventeen to roughly twenty one, I opted for a more secular Julia-Kristeva-meets-Jennifer’s-Body theory of my own pain. There was something vindicating about seeing myself as part of some feminist body horror tradition. Constructing myself as the host of the sight of both sexual intimacy and creation and having it desecrated from the inside out with pain and revulsion felt if not comforting then at least comprehensible.
I spent several years alternating between essentialism and detachment from gender because I saw my pain as inextricably linked to my body as a gendered object. It was easy to feel like my body was an antagonising force, separate from myself. As one doctor put it, “your organs are not your friends.” It was tempting to try and identify with my pain and my struggle to manage it. New friends in college would send me memes about girls whose tummies hurt, how god gives his worst tummy aches to his strongest soldiers, how girls with tummy aches are being soooo brave about it. I don’t find this genre of content particularly funny. I don’t think it’s meant to trivialise my problems, I think it is joking about a set of similar, less severe, more common problems. It’s for girls who feel sick because they had no breakfast and two iced coffees (generally fodder for proto-anorexic content sludge). Politely, it’s not for me.
Yet, when I try to explain my situation to people who haven’t known me very long or haven’t had the misfortune of seeing me writhing in pain or barely able to speak as it washes over me, their effort to understand what I’m explaining often stops at the point where I can be fitted into a pre-negotiated category of cutesy tummy aches. It’s that or a more melodramatic Pinterest boarded character who represents aestheticised female pain. Imagine a moodboard featuring a cutout of a weeping woman from a renaissance painting, a scattered assortment of painkillers and muscle relaxers, a bottle of perfume, a polar bear covered in blood, a croissant that inexplicably has a bow tied around it, and some pomegranates. The internet is very bad at but very dedicated to talking about (or just around) women’s pain in reference to cultural objects.
In some corners of the internet, there is a hope that by triangulating the right combination of references to Ethel Cain, Ottessa Moshfegh, Shakespeare (and later, Millais’) Ophelia, along with .png images of cigarettes, black coffee, silk, blood, and moss, that some aspect of the formless, shapeless anguish that is presumed in these circles to be common among women will be rendered visible and comprehensible.
The whole thing reeks of gender essentialism. It’s the same visual language that is used among online pro-eating disorder ‘communities’ to reify their behaviours, creating meaning and value for something negative by associating it with aesthetics made meaningful through online discourse. I don’t think there is much liberation in going from old ideas about women who read too many books contracting hysteria to the new repackaged version where women who post online earn a special, pseudo-intellectual, aestheticised tummy hurty. It doesn’t matter if you have anaemia or depression or IBS or endometriosis, you can flatten your experience into a reaction image of Dasha Nekrasova, though I doubt it ever really helps the problem at hand.
Over the years, as my symptoms continued and sometimes progressed, and the cultural representations of female pain I was exposed to felt increasingly incomplete and alienating. It’s understandable that as a teenager and young adult I felt that my experiences of periods and pain didn’t fit into what were presented to me as the functional or even dysfunctional modes of femininity. I felt alienated from my own body and from my gender. I alternately resented and rejected the idea that this was all just part of being a woman and began to feel like the whole project of womanhood clearly wasn’t for me. Then I began to worry that by defining myself in opposition to the pain that I understood to be essential to womanhood, I was still defining myself in relation to gender and pain. It seemed impossible to escape, discursively or physically. For what it’s worth, I’m as nonbinary as the next guy, but I try not to think about it too hard in relation to my physical ailments - I retain the right to revisit the whole gender thing every couple of years/haircuts as I see fit.
The real reason to reach for any given meaning for the type of pain I feel is because it is easier to tolerate something meaningful (even if the meaning is negative or just artificial) because it imbues the person experiencing it with a sense of purpose. Even for me, someone who is interested in the cultural meanings attached to pain (and women’s pain in particular) but not personally bought into them, the search for a meaning for pain can itself make the pain bearable. I’m not just experiencing pain, I’m participating in the shared experience of many women denied and erased by modern medicine. I am part of a collective that has been written off as hysterical, neglected amid a lack of research into endometriosis or PCOS.
The average time between showing symptoms and receiving an endometriosis diagnosis is ten years. Gynecology was founded on the experimentation on enslaved women without anaesthetic. The church made up the need for a break between packets of the contraceptive pill because they believed it was unnatural for women not to bleed. Those same pills were tested on Puerto Rican women without their informed consent. I am part of a rich history of systemic violence against women. The real pain is in the way society is structured around neglecting these problems because those who suffer from them don’t matter. This is supposed to make me feel better.
All of those facts are contextually relevant. They are important to histories learn and understand. They are not, however, an explanation of the inherent meaning of the pain I personally feel. The secret lurking beneath it all is that the pain itself is meaningless. My body is indifferent to my desire for meaning. The pain is banal. It simply is. It comes and then it goes and then it comes again. Maybe forever. One doctor, shrugging, told me that I will probably grow out of it in my thirties. I know that my thirties are not all that far away, but anyone who knows the way in which profound pain seems to warp time around itself will understand why I laughed out loud.
Part of me, perversely, takes a sort of pride in being the vessel of this pain. It’s a pain that seems amorphous, without a clear start or end point, an effect with no cause. I suffer at the hands of a phantom, any potential tangibility of it is obscured deep within the body. The trust required of others in the plausibility of my pain is like a medal. There is a special act of faith in another person who cannot see what is wrong promising that they believe, if not in me, then in the pain that is created by and experienced only by me. In her book, The Body In Pain, Elaine Scarry writes that “to have great pain is to have certainty; to hear that another person has pain is to have doubt.” I consider myself lucky to have people in my life who give me the gift of their certainty. Even though they often cannot help me, they stay by my side and do not doubt. The pain might not carry its own meaning, but the way others treat me in its presence is a very meaningful thing.
After over a decade of this, I have learned that I can either accept the pain or I can accept that I will constantly fear its next appearance. I have tried the constant fear and it does not help. Being afraid of your own body makes you spiteful, jumpy, and exhausted. It makes you feel like shit even when your body isn’t feeling like shit. The fear will make you cruel to yourself. It is easy to mistreat a body you see as your enemy, to not give it the things it needs, to not look after it. Obviously taking care of your body, eating good food and moving it around helps. Punishing it for not being functional can only make it less functional. Right now, I am in bed with three surgical incisions bandaged up on my stomach, and I am dreaming about the next time I can dance with my friends, run for a train, slam myself down on a surfboard. For all its issues, I am generally able bodied, and grateful for the good times I have with my body, as well as the strength I have to get through the bad.
I am not so ascetic as to be able to simply accept the pain like the ebb and flow of an erratic tide. I am not immune to the search for meaning. I try to accept that the pain will come when it comes, and hurt the way it hurts, and eventually go when it goes. It will make me double over and faint and shit and cry as it will. I will do my best to lie down on the floor before I fall and give myself that dappled hot water bottle burn when I have to, knowing it will fade when it fades. I will take painkillers without exceeding the maximum dose, knowing that they will help only what they can help and nothing more. I will know that if I faint on the train or need to leave somewhere early that I have people who will understand and help me home, who will come when I call them, and if they can’t, then I will wait.
While I do all of that I will also, maybe inadvisably, be kind of proud of it. I know I can endure whatever will happen, based on the way I’ve endured everything else up to this point. When I am at my weakest I am still able to handle the strongest pain my body can muster for me. It was never really the me versus my body antagonism that I felt it was when I was younger. My body is me, my mind is me. It’s not hurting me, I am not hurting myself, I am just hurting. When I am well, I get to walk around carrying my little secret: the knowledge that I can take it.
Recently I underwent laparoscopic surgery to see what was going on in the previously impenetrable and imperceptible insides of my body. So recently, in fact, that I had to write a lot of this on my phone initially (something I find undignified and exhausting) since I couldn’t even sit up to use a laptop. Beforehand, The consultant said my symptoms were very suggestive of endometriosis. He prepared me to expect that the doctors could find a great deal of stuff that shouldn’t be inside me and that they would scrape as much of it out as they could.
When I woke up from the anaesthesia I couldn’t quite understand what the doctor meant when he said they found nothing. He showed me pictures they took inside of my pelvis (which were always going to look unhealthy to me because healthy people don’t usually get to look at their own insides) but the pictures were clear. No endometriosis. No cysts, no polyps, no growths. The phantom was nowhere to be seen. The stigmata had healed. I felt like someone had just told me a joke but I didn’t understand the punchline.
You would think years of non-answers would have prepared me for the ultimate non-answer. They didn’t, but the only options are to either resign myself to pain that in theory could be avoidable or to keep moving forward. So, with a great deal of scepticism, I’m going to keep trying various treatments that I’m assured work very well for lots of people. I’m going to keep forking out for doctor's visits and calling in sick to work and fainting in inconvenient places and somewhere between all of that I am going to try to live my life.
I do not want to define myself by my pain or even in opposition to it. It’s boring and inaccurate. When it demands to be my sole focus it will be. I’ll ride it out. The rest of the time I will try not to let it loom too large over me. But I will retain a secret sense of pride that while I may not look strong, I know that I can endure whatever is coming. The pain will max out my nerve endings from the inside, make my vision go black and my skin go grey, but all it can do is hurt me. I can be hurt, but I will not be scared.