A cheap bottle of supermarket wine smashed everywhere, and I almost cried. I had misjudged the packing area at the supermarket self-service checkout. That wine, and accompanying chocolate, was a last-ditch attempt to feel better after days of exhaustion and pain caused by my endometriosis. Endometriosis is like internal bleeding. Every month, cells similar to the lining of my womb, which camp out in other parts of my body, cause swelling and pain. This endometrial tissue goes through the cycle of thickening, bleeding, and shedding, just like my uterus lining during my period. Except these cells have nowhere to go. Any shedding must be broken down and reabsorbed by the body. No escape. It’s painful and tiring as hell. My fatigue regularly affects my spatial awareness – to the point that I’ll constantly drop things, hit my head off door frames or bruise my arm on a sideboard. That day the wine smashed all over the supermarket floor my aching muscles and stupefied zombie brain totally misjudged the bagging area. Luckily only my self-esteem (and the wine) were injured. But, it was a sad day for all and I blame ‘Claudia’, aka my endometriosis. In general, a condition that ‘needs a good talking to’ and a great deal more talking about.
Yes, I’ve personified my endometriosis. Calling her ‘Claudia’ makes it easier for me to not feel guilty or weak when she claws at my insides like a clutch of angry kittens. Or when her spectre looms over my work schedule …weekend plans… general life. I count myself lucky that Claudia, my lifelong pal, my endometriosis, mainly only causes me pain, and not any of the other debilitating symptoms many endo suffers have to endure. Pain, fatigue, and most recently nausea, are my jam, but I’m spared the long list of associated and intersecting symptoms like heavy bleeding and bowel issues. I am one of the ‘lucky; ones and yet my body is going to war, sometimes regularly, sometimes sporadically, roughly every three weeks. For other sufferers Endo is more constant, more debilitating, affecting bodily processes and mobility to a high degree of disability. But just as no two bodies are the same, no two conditions or experiences of pain are the same. For me, Claudia is my own personal endo demon. I insist on introducing you to her in my own way here because the medicalised descriptions of endometriosis symptoms such as pain, fatigue, and nausea, don’t quite do endometriosis justice. This endo-monologue is an attempt not only to do endo justice, but to share the experience, frustration and injustice in endo treatment – pointing out that communicating the experience of endo is the one tool we have in our power to fight this demon of the womb.
Here’s Claudia. I got my period at about age 14. But it stopped when I was acutely ill and underwent treatment. My periods didn’t come back until I was almost 18. They arrived in a bloody mess of pads, tampons, and aura migraines. Like most other Mancunian girls in the 2000’s, who threatened to drive up the high teenage pregnancy rates of the North West, I was put on the pill by my GP. It would stop the pain, I was told. Absolute Lies. Not only did the pill make the pain worse and my bleeding heavier, but aura migraines forced me to lie down more. For this, I was prescribed paracetamol. Around this time, amongst my friendship group, one of my friends was worried they might be pregnant. Their period was several weeks late. We speculated:
‘Imagine if you’re pregnant? What would it be called?’
‘Something like Claudia, probably’
Not knowing anyone called Claudia, this name sounded pretentious to us, and reflected the personality of the potential father. Apologies to all people called Claudia out there, we were young and had never met you. In the end, ‘Baby Claudia’ turned out to be a late period, held up by exhaustion and study stress. When the blood flowed, we recognised Claudia for what she was, our uteruses messing with us. From then on, periods and the woes they brought, were known as ‘Claudia’. It became a code word for communicating period pains, mood swings and feeling like an emotional mess. It was around this time for me that Claudia started being a catastrophic [insert expletives here] hot mess.
In the late 2000’s, menstruation wasn’t ‘out’ then, like it is now. Blue liquids represented blood on sanitary towels and adverts still told you to have a ‘happy’ period. Period pain might have gotten you out of high school PE. This was rare though as the myth was exercise was good for the pain. Lies. Painful periods rarely get you out of class. You wouldn’t dare mention period pain to your hip male art teacher, instead you just asked your friend to slide you paracetamol and ibuprofen and hope for the best. Your elderly female film teacher showed you solidarity. She was nice enough to not wake up when you fell asleep in class, or call on you when held your head in your hands in pain. She was an ally. You certainly didn’t mention it to your bosses at your part-time jobs because they were mainly middle-aged men. Instead, you bitched about Claudia to your female friends and workmates: ‘That cretin [insert expletives here], who invited her?’ Claudia became a useful code name for menstrual pain. Unfortunately, this tactic didn’t help the stereotype of a whinging teenage girl.
Personifying and hurling abuse at ‘Claudia’ was a start’. Little did we know that Claudia, for me, was a far more serious level of B*tch than we originally had her down for. The pain that came for me every month ran through my legs. One summer I found it hard to walk. Whilst at university I started to spend my Claudia time searing my bloated tummy with a hot water bottle and hobbling around the house as if I was 40 years older than my 20 years would have you believe. If I was cramping, but still had to don some heels and go to work at my part-time job in a cocktail bar, I would run into back bar when I got the chance, prop myself up on the radiator and breathe deeply. My workmates ran in and out for more ice and limes to use as ammunition in the cocktails they hurled at the ‘enemy’ aka the punters. ‘We’re at war,’ my boss would shout at me, and I’d yell the same thing, but internally, to my uterus.
Naming Claudia helped me to communicate my experience to my close friends and family. Before my endo was diagnosed, and even for some years after, I just thought I was angry and sickly every 3-4 weeks. It took me an embarrassingly long time to work out that those monthly and bimonthly flu-like symptoms were Claudia and her special type of evil. Naming Claudia helped me to identify all this. My friends also joined in hurling abuse at her. Solidarity at its best.
Dementors around the uterus
1 in 10 women have endometriosis. Endo is never ‘just period pain’. It has been around for a long time, but treatment for it is limited, and research into its causes, effects and treatment is woefully sparse. For a long time, its symptoms have been treated as ‘women’s problems’, ‘normal’ periods, ‘part of being a woman’. The condition itself is sexed and gendered, and this has been part of why it has not received the attention it deserves. Personifying the pain is a ‘fun’ tactic for dealing with endometriosis or ‘endo’ pain. I recently discovered that I’m not the only woman to give a name and identity to the dementor inside them. I always thought I was just strange but turns out it’s a valid response. In fact, metaphors play a great role in communicating pain to others.
In a time of ‘unprecedented’ health crisis, backed up waiting lists and poor funding, I both fear, and am hopeful that communication is a realistic and powerful tool we have access to influence the structures of power that hinder knowledge and treatments for endo. I’ll tell you why. A huge number of people are only just starting to be diagnosed and get their voices heard. Shockingly it takes on average 8 years to be diagnosed with endometriosis. Shocking yet unsurprising to those of us familiar with seeking help for gynaecological health issues or chronic pain.
Menstrual pain isn’t investigated, and in many first second and third instances, you will be fobbed off with the pill (no it is not a cure) or some paracetamol. Other treatments include ablation (lasering out the endometrial tissues) which itself can cause scarring and doesn’t stop the endometriosis from growing back. Another option is inducing early menopause – just like that. A needle happy gynaecologist was ready to inject me during my first consultation with her whilst I was starting my postgraduate degree at 25 years old. Again, not guaranteed to work, this treatment is followed by hormone replacement therapy. You can see why these treatments are not so attractive, and even more so because there is no guarantee they will ease the pain. My all-time favourite ‘cure’ that has been heard by countless endo suffers is ‘have a baby’. ‘Sometimes it blasts it all out’ one doctor told me. Let me be clear, this is not a cure, nor should it be recommended treatment. Least of all because one symptom of endometriosis is in fact painful sex and difficulty getting pregnant. But most of all because having a baby is a life-changing event for two or three people, not a valid treatment for a painfully debilitating condition that affects 1 in 10 women. We need to shout this angrily from rooftops.
Imagine if 1 in 10 people with testicles had them constantly stuck in a vice? I’m sure someone would try and tell them sex was the cure, but would something be done? If it was stopping 10% of people with testicles from going to work? Leaving the house? In the short dramedy ‘End-O’, the writer Elaine Gracie cleverly turns the tables on the audience when a the main character Jaks is prescribed painkillers for her long diagnosed endometriosis. The film reverses roles and cuts to a female doctor explaining that there is no cure for a male patients’ balls being trapped in a vice. He could try ‘getting them lopped off’ she suggests, adding ‘but it’s not a cure’.
Imagine what it would have looked like if women were taken seriously, their pain not doubted, their bodies taken care of, not shoved aside in 1860 (when Endo was first discovered), or 1960, or 2021? Endo is the ultimate Feminist Killjoy. On one day of pain, I text my friends ‘I need to look at something that is not too happy’, because I couldn’t help resenting peoples’ smiles. Mostly though, I resent the paternalism of biomedicine, I resent men for not having to deal with Claudia, and I despise the patriarchy for hampering the effort to come up with something to make it more liveable.
I have to say, my all-time favourite analogy comes from Trump’s own personal physician, Stella Immanuel, who is reportedly said that women with endometriosis have had sex with the devil. Yes, Stella, you’re right: we’ve all had intimate experiences with the patriarchy. Today after years of consultations and diagnostic surgery I know my enemy, my devil, my nemesis a little better. It’s the endometriosis inside my body and the lack of treatment and ignorance around for women’s pain outside it.
During a flare-up my legs don’t work, my body burns from the core outwards, I feel nauseous and restless and infuriated with pain. And sometimes I just lie there and stare for a while. Or stuff some more painkillers or CBD oil down my neck. In the days or weeks preceding Claudia’s arrival I turn into a zombie, either struck down with cramps, nausea (or both) and fatigue that reaches the very pit of my stomach. I can stand staring like a zombie into my closet whilst I wait for my brain to remember what I went in there for – for a full 60 seconds, willing myself not to give up with getting on with my day. Typing on a keyboard or writing a post-it note can be a challenge. I know she will pass eventually, and leave me alone for a time, but then again, I’m counting on her not getting worse.
If it’s not already apparent, let me be very clear, this essay comes from a frustration endo-filled place deep inside. Personifying my pain and making deals with my nemesis is a personal coping mechanism, but there is much, much, more we could do to make it liveable. Communicating about endo to others, and with Claudia, is just the first step.
Let’s start by simply acknowledging endometriosis and other gynaecological issues. There has been a lot of talk around normalising periods in the movement for gender equality. Yet rather than simply ‘normalising’ menstrual pain, what we need to be telling girls AND boys in school, is that periods do affect us. Whether that be personally or those around us, and yes, some periods are worse than others. And sometimes roughly 1 in 10 might suffer from pelvic pain, that is not a period. This is not a monthly drill. Wombs are powerful in many ways. This is about gender equity and reproductive justice. Because not all periods are just periods. Had it not been for an NHS warrior hero of a mother I might never have pursued treatment for endometriosis. I certainly wouldn’t have persevered after I was fobbed off with the pill and pain killers several times for ‘period pain’. Not everyone’s bodies are the same and certainly not all pain that women experience is the same. We need to shout this from the roof tops too.
Why do we continuously ignore women’s pain? The easy answer to that is in deep-rooted sexism in biomedicine that many are working extremely hard to undo. But going beyond sex, why do we consistently overlook pain we can’t see, or find a cause for? The anthropologist in me puts this down to our Cartesian dualist thinking which divides mind/body, nature/culture, and the material/immaterial and has long been embedded in western biomedicine. For example, we are only now starting to link mental health more closely with physical health, rather than see them as separate things. Recently the spread of coronavirus has drawn more attention to threats to health that we cannot normally SEE. We need to spread the word that endo is a SERIOUS health concern that should not be stood for, or put up with, or screamed into a pillow just because it is not visible. We haven’t found cures for everything yet, plenty of conditions need better treatments and we desperately need better treatments, services and coping mechanisms for disorders of the womb and other chronic diseases, but the first step for endo, is simple – recognizing it exists, taking Claudia seriously.
Just because pain cannot be seen, doesn’t mean it shouldn’t be heard.
Naming Claudia helps me to remember that we, me, and her, have an understanding. Several years ago when I was exasperated by her constant nagging, her unpredictable and unsolicited pain attacks, I reached my wit’s end. I had exhausted all possible biomedical and herbal treatments. The prescribed painkillers, invasive surgery and hormonal contraceptives were not placating her. I took all the other remedies I could get my hands on. To no avail.
I had no choice but to enter in to peace talks and call a truce with the nemesis. The conditions couldn’t please both sides, but we came to an agreement: Claudia would continue to cause me pain, but in return, I could hurl verbal abuse at her, dowse her in pain killers, chocolate, and wine. Most importantly in our treaty, Claudia could not stop me from doing the things I wanted to do; seeing friends, outdoor adventures, and my beloved research work. She definitely oversteps the mark sometimes, and we have to go back to the negotiating table. If it took me 30 minutes to unpack my shopping due to fatigue, or I lost my cup of tea because I accidentally put it in the fridge due to brain fog, Claudia got a well-deserved talking to me. If she ruins my week with nausea or a month with constant pain, we briefly go to war.
Despite this, I’ve become more optimistic about endo in recent years largely due to the work of organisations like Endometriosis UK who have been drawing attention to the issue. The aforementioned film ‘End-O’ is also one of a range of modes of creative awareness-raising. Instagram accounts dedicated to spreading the word, such as @F*ckEndo, @endogram and @endometriosismemes, are a sight for sore eyes and a source of solidarity during painful flare-ups. Bringing all these health awareness techniques together helps solve some of the issues of awareness and isolation.
The deep-seated structural sexism in biomedicine, paternalism and funding issues are a much larger structural issues that is less easy to solve. These structural issues don’t only affect Endo but other gynaecological and women’s health-related issues. This is frustrating, but the positive side is that Endo campaigners are able to team up with women’s health advocates and chronic pain health advocates. After all we are all in the same large scary boat that keeps getting washed back out to sea.
There are already a lot of groups doing great work out there, what we need is more of it. More space, time and money for collaboration and more innovative ways to communicate Endometriosis to a wider audience. If anything can be argued in this piece it is that it is that metaphors, analogies and stories do much to help us all understand the true experiences of pain. So let’s gather ourselves, the storytellers, the researchers and use the most accessible and powerful tool we have: our experiences, to tell the UK about a condition that is as common in women as diabetes and asthma.
I envision an Endo creative collective, focusing on getting women’s experiences out there, communicating them accurately and innovatively. Beyond medicalising endo and calling it ‘pelvic pain’ or ‘heavy bleeding’, films, social media, writing and thinking about the language we use around Endo helps to communicate the affective experience and impact it has on our lives. It helps to put a name or a character to the otherwise invisible, as well as connect it to areas of our lives it affects, such as the ability to work, anxiety, depression and other related health issues. Whilst a great deal of medical research needs to be done, not to mention vast improvements in diagnosis and access to treatments, I find the most powerful tool we have control of in the ‘womb tool box’ is collectively and creatively communicating the affective experience of Claudia herself.