This essay appeared in Dark Mountain Issue 27: Bodies. It is part of an ongoing piece of work called ‘Wandering Womb’, which describes the experience of two journeys. The first, a trip to ancient healing sites around the UK, and the second, of living with endometriosis.
Passing through the stones. Mên-an-Tol [photo Nick Hunt]
Mên-an-Tol
Mên-an-Tol is a series of late Neolithic or early Bronze Age standing stones. It stands near the Madron to Morvah road in Cornwall and is regularly visited by walkers who also visit the abandoned tin mine nearby. The central stone has a large hole, perhaps manmade, perhaps not, which is big enough to crawl through. The poet D. M. Thomas referred to it as ‘the wind’s vagina’, but it is known locally as the crick stone. In Cornish Mên-an-Tol means ‘the stone of the hole’.
The site’s folklore declares that there is a piskie (fairy guardian) who will take care of curing you – if you do their bidding. This particular piskie’s bidding involves various instructions on how to pass through the central stone’s hole.
Children with rickets: nine times – naked
Young woman wanting a baby: one time – full moon – naked
What I’ve heard repeated the most is that passing through it three times, anticlockwise, with your back to the sun, will cure you of any ailment. Naked, of course.
The cows had left a large present for us when we arrived. A mound, freshly steaming, very close to the central stone. Even my dog refused to go through, and he eats sheep shit like it’s popcorn. I sat with the stones a while, wondering if this was a place I was willing to risk being caught by passers-by with my boobs out and possibly with a knee or elbow-full of cow shit.
That morning had turned sour. My partner and I were on a summer trip around Cornwall, seeking out sites associated with healing. We had attempted to drive to Holywell Cave, where St. Cuthbert’s remains were said to have touched the cave’s walls after they were transported south from Lindisfarne to escape the Vikings. Where the saint’s remains made contact, a freshwater spring had sprung. Since then, the sick and disabled were said to have crawled and hopped up the miraculously formed steps to drink from the holy spring and ask to be healed. At Holywell Bay car park it was a one-in, one-out situation, with cars crammed full of beach umbrellas, dinghies, and sunburnt children. Cornwall, in August.
Halfway through our sweaty wait, I got a text from friends who, after several rounds of IVF, had finally had a baby girl. She was a bundle of sweetness. In her face, I could see the echoes of two people I loved a lot. I imagined the emotions all parents, particularly women, have been taught they will feel in this moment: life is complete, happiness starts now. I looked at the words of the text: ‘I didn’t know if I should share this with you because of your difficult fertility journey’. A sort of closing-in sensation began below my ears and quickly travelled along my jaw.
Three years earlier I was having lunch with my mum when I fell to the ground with the kind of out-of-the blue pain which can only take you to one place. I felt like I’d been shot, like something that wasn’t meant to give way had in fact, given way. I’d had bouts of pain in my pelvis before. A few times it had taken me to A&E but on arrival I’d always been well enough to nod along with the doctors. ‘Yes, I’ll talk to my GP if it comes up again.’ I’d leave with a few prods but never any investigations. The resounding message from the medics was: women sometimes have pain in their middle, at their core. Deal with it.
This time I was convulsing from the pain. I was put in a wheelchair on arrival. Appendicitis? Must be. While I swam in a sea of morphine and prepared to have my appendix removed, a final scan showed I had some extra body parts the A&E doctor hadn’t thought could cause the amount of pain I was in. Sacks, tubes, tentacles; a bobbing cretinous unruly mass hiding in the deep and something in there didn’t look right. This patient appears to have a problem in the other realm: take her to gynae!
It was during Covid so I sat alone in the small consulting room while the gynae doctor said a word out loud I’d never heard before: ‘endo-metri-osis’. The word was just sounds. ‘Stage IV. Deep infiltrating’. I knew stage IV wasn’t good and deep infiltrating also sounded unpleasant. There was something about the way she asked me ‘where are you on your child-bearing journey?’ that initiated a thump of panic; the student doctor hovering at her shoulder looked down at the floor. She discussed surgery options for the coming weeks, but I just kept hearing ‘incurable’, ‘chronic’. As I stood up to go, I remember saying ‘this feels like the start of a difficult journey.’ I made my way out to the car park where, after thirteen hours, my mum was still loyally sitting in the car. I put my head in her lap and cried in a way you perhaps only cry once or twice in your life. Through messy tears I kept repeating ‘it’s not cancer, at least it’s not cancer.’
I now know that endometriosis is a disease in which material similar to the material found in the womb starts to grow where it shouldn’t. This material bleeds each month along with your menstrual cycle but unlike the shedding of the material of your womb, it has nowhere to go. If left undetected it eventually sticks your insides together, bowels get attached to ovaries, and ovaries to diaphragms. Eventually this regular unwanted bleeding causes lesions that gnaw away at your organs; hence the ‘deep infiltrating’. It is believed to be one of the most painful diseases known to the medical community. Women who have endo and have given birth say that an endo flare is more painful than childbirth. It is illustrative of the gender health-gap, in which women’s issues are systemically underfunded and under researched, that endometriosis, on average, takes over eight years to diagnose.
My endo had been undiagnosed for so long that it had begun to gnaw into my bowel, rupturing the bowel wall. It had caused my ovaries to swell, forming what are called ‘chocolate cysts’. It had taken over all parts of my middle, wherever it could find room, and stuck organs to places they shouldn’t be. MRIs in the weeks to come showed that it had even made its way to my diaphragm. It was literally taking over. It can’t be cured, only managed with hormone therapy. It can be cut out (excision surgery) but always with the possibility of it growing back.
In the ancient medical world, a ‘wandering womb’ was blamed as the cause of many ailments in women. It could even cause suffocation and death. How strange that they managed to name an ailment with surprising accuracy before science caught up. And endometriosis can in fact develop in the chest, leading to shortness of breath, lung collapse, and, in severe cases like that of Kenyan endometriosis activist Jahmby Koikai, death. Endometrial tissue has even been found in the brain.
I often think of the multitude of women who were institutionalised and disregarded due to their wandering wombs. The ones sent to bed or sent away because of their swoons and funny turns. Menstruation and pregnancy were thought to make women the weaker sex, both physically and mentally. By the late nineteenth century, it was deemed scientifically proven that women’s biology made them less rational than men, unfit to participate in many areas of public life. Hysteria in fact derives from ‘hystera’, meaning womb. This linguistic association between women’s health and hysteria is still in use today in the term ‘hysterectomy’.
Apart from the pain, I thought the regular sensations of unsteadiness on my feet I’d felt over the years was because I was mentally fragile. I had learnt to bully myself out of them. The loos of various theatres I worked in (I’m a theatre director) had became private coaching spaces. If I felt a sudden weakness coming on I’d nip out of rehearsals and pace around a cubicle – come on Caroline snap out of it. After being told repeatedly I was healthy and there was nothing wrong with me I blamed myself for struggling. When I confided in a more experienced female director about these strange episodes, she told me directors should never show a cast they’re flagging, especially women, it damages their leadership credentials. My main take aways from that conversation were: never show weakness and always carry a packet of nuts.
I am so grateful that modern medicine has finally made diseases like PCOS and endometriosis undeniably real. They had to see it, to believe us. I had to see it, to believe it.
My invisible pain was now acutely visible. On returning from the hospital, daily symptoms included acute pelvic and intestinal pain, a large distended belly, severe fatigue, rib pain and breathlessness. There are only 17 endometriosis centres in hospitals in the whole of the UK, with specialist teams of nurses and surgeons who understand the disease, and it’s the luck of the draw if you live near one. I’m extremely lucky that I do. I realised that on a night away from home when the pain was again unbearable. I went to the nearest hospital. The A&E doctor, looking utterly overwhelmed, said he’d never seen such a long and extensive MRI report and was I aware I had endometriosis?
“Yes. Yes, very aware. Can you help me?”
With flushed red cheeks and something like embarrassed regret mixed with a large dollop of impatience he said,
“No, I really can’t.”
Later that week a GP at my local surgery told me,
“It’s funny I was talking to another doctor about endo this morning and we were saying how there’s no point diagnosing it early because there’s nothing we can do about it anyway. And what twenty year old wants to have to think about their fertility choices?”
Me. I would have wanted to. I tried to steel myself with some facts:
“I read that endo research received 1% of the funding diabetes got last year.”
“Well, that’s because diabetes causes far more problems.”
I held my middle. I came from a family of diabetics and so knew first hand what a hard disease it is to navigate. But I also thought about my broken ovaries, broken bowel and acute pain. Instead of raging I asked if she’d seen a documentary that had just been made to try to draw attention to endo?
She guffawed, “I don’t have time to watch TV. The best way I can help you is to pretend for a moment you don’t have endo. Now, what is it you want me to do?”
I left the surgery feeling like I’d been punched in the face. What was it about this disease that made it so hard for so many people in the medical community to hold it with care? Perhaps the old cliché was right in this instance – people fear (and so dismiss) what they don’t understand.
Apologetic birth announcements had become a theme after my diagnosis. Calls from friends I hadn’t heard from in years, who in low, almost regretful tones, would tell me they were having a baby. Friends who were parents would stop conversations about their children, in case I was ‘being triggered’. All kind gestures of people trying to do the right thing, as the news of our fertility problems trickled through the social strata. But all this sensitivity had come to feel like a spotlight on our otherness. Do we get left out of your joy, as well as our own? Waiting in the line of cars to try and visit a holy cave, the shame spiral started to descend. Turn the car around. I don’t want to be in this queue. Get me out of here. Away from people. I want to be alone.
My partner is now well versed in letting me sit with grief without the instinct to make it all better. I had been initiated into the realm of long term illness long enough to know that this disease wasn’t my fault and that comparisons, or notions of losing or winning were unhelpful and unkind. But the truth was that this disease had become a daily battle, or at the very least, a full time job. It was hard not to compare myself to able- bodied friends and harder still to an able-bodied version of me. So many dreams were on hold for the current full-time, unpaid, job at hand: pain management. As a freelancer I had no sick pay to tide me over and the task of inventing an entirely new way to earn a living, in an entirely new body, felt overwhelming. I attended disability workshops at my local jobcentre, where me and other disabled and chronically ill participants stared at piles of leaflets and discussed Personal Independence Payment (PIP) and Access to Work schemes. Me and Barry (not his real name) roleplayed discussing our disability with a potential employer. Barry had Tourette syndrome and found it hard to hold down full time work. He was impossibly tall, at least six foot five. Just as I felt we might be getting somewhere Barry had to leave – a meeting with his parole officer. As his huge torso ducked the door frame I remember thinking that if I were to commit a crime, I’d definitely want Barry on my team.
The workshop leader ended by telling us that despite the disability act, it would be illegal for us to apply for a job if we knew in advance we weren’t capable of doing it due to a mental or physical impairment. I looked up from the pile of leaflets.
“But surely an employer should make adjustments so that we could do the job?”
“Well, they only have to make reasonable adjustments.”
“Who defines what’s reasonable?”
“They do.”
“So would it be illegal for me to apply for my old job, a job I’ve done for over ten years, because of my current health status?”
“If you know you can’t physically do it right now then, yes. Yes, it would be illegal.”
I could feel my world starting to shrink. Where’s Barry? Turns out I might need a bit of petty crime in order to put food on the table.
After the workshop I sat in my car feeling something close to shame. During the last few months, crying in my car had begun to happen on a worryingly regular basis. I’d make sure the windows were up and be grateful for a space between worlds where my tears didn’t hurt anyone and I could remain unwitnessed in how well, or not well, I was coping with this illness. I was grieving my health, the loss of an old work identity and the idea I’d had of myself as a mother. I felt afraid of an increasingly narrow looking future. I didn’t want to get out of the car.
During those dark days I started having a whimsical daydream: to make a series of journeys to ancient sites in Britain, where women, specifically, had come and asked piskies, fairies and even giants, the most risky and brave of questions: can you heal me? In the context of chronic or long term illness that question is complicated but perhaps its simplicity was part of why I loved the idea. I began researching and found some sites in Cornwall. I suggested it as our summer holiday and we started to make plans.
It’s cloudy when we arrive at Mên-an-Tol and a cold wind has started up. So, you are meant to climb through the central rock naked three times going anticlockwise – your back against the sun. This was a relatively busy path and it was 11am. Note to self – if you want to do the naked thing maybe arrive closer to 5am. I am excited. Do I have an intention beyond ‘please don’t let me get caught in this field naked’? Not really. But I feel exhilarated. It is a thrill to actually do something. I have a map: a way of interacting with this place that has been followed, possibly for thousands of years, by thousands of people also wanting to be healed. It feels like they are cheering me on.
Afterwards I sit on a shit-free bit of grass (hard to find) and write down some notes reflecting on this place. My partner knows enough to leave me to it. The silence feels important. Very soon other people arrive. What a shock they would have had if they’d been here two minutes earlier. It makes me look at the stones differently. They know my secret.
As I offer to move out of the way for the family’s photos, they gesture for me not to move. I realise they don’t speak English. I don’t speak their language but I like the sound of it. It’s bouncy and friendly in their mouths – Swedish? I can’t help myself from saying ‘you’re meant to go through three times. Naked. With your back to the sun.’ I try to mime the meaning. Their nod says, we’ve no idea what you’re saying but thank you for communicating with us all the same. As the older lady in the family leans down to touch the central stone I read the back of her bright pink hoodie, ‘Don’t worry, beach happy’. The teenagers in the group point out the amount of cow shit everywhere and we are able to share the word ‘cow’ together, helped by smiling and making mooing sounds. As the family leave, the pink hooded lady rests her hand on one of the upright stones. The rest of the family walks on, but she lingers. She closes her eyes and whispers something – talking directly to the stones. As she leaves, she keeps looking back, as if waiting for a reply.
This is the first time on this trip that I feel like I’m doing what I set out to do. Being with a place. Tuning into its invitation. Because what is a hole in a stone asking other than for us to go through it? A cave with steps wants us to walk up them and a spring asks us to drink. I think more about how each of these places is a way for the human body to have closeness to nature and how the invitations in these sites to come close are so clear. Their beckoning transcends language. From Neolithic humans to the Vikings, people could read them.
March 2024
The scratch started about an hour after waking. I know this pain now so I do the things I know to do.
At about 3pm I leave a voice note for my mum. I’m ok. But the pain is bad and I don’t think I should be alone. Just in case.
The animal in me worries.
That night I put a bag packed for the hospital beside the bed. It’s an odd thing to try to sleep with pain as your bed-fellow.
When sharing a bed with a pet or lover, an elbow or sharp paw isn’t comfortable but it’s safe and you can drift off in the solace of company. I’ve learnt to do the same with pain. I have a new companion tonight. They’re bony and scratchy and taking up too much room but I’m sure I can fall asleep alongside them. I try to feel affection for this uninvited entity. Come on in, I say. You’re welcome here. Yet to turn off the alarm bells that tell you this pain is dangerous is the work of a strong mind. This time I couldn’t do it.
About 3am I grab more of the hospital essentials: noise cancelling headphones, eye mask. In A&E there’s a woman screaming about demons. I say yes to morphine. It’s an eight hour wait to be transferred to gynae. A man groans next to me. He’s been here for twelve hours.
Once admitted, my endo nurse comes into the ward and sings to me. She’s Romanian and this isn’t the first time I’ve been serenaded by her. This time it’s ‘No Woman No Cry’. They’ve forgotten me and my morphine has trailed off so I’m sobbing in the kind of mental health meltdown way that only strong drugs (or withdrawal from them) can induce. I’m not told that a scan isn’t happening today and so I wait confused as the sky outside my window starts to darken. I’ve never spent the night in a hospital before and I’m scared. There’s beeping and moaning; all night the slow steady retching of a heavily pregnant woman.
The scan shows a ruptured cyst. The same event that had caused me to be diagnosed. I’m sent home with more singing from the endo nurse and some very strong drugs. I’ve been on the waiting list for surgery for over a year now. Surely soon?
Once home the pain is daily. A pulling ripping sensation. Intestinal cramping, burping until I’m sick. I go to the GP for a little help and we test again for cancer/ulcerative colitis/Crohn’s. I’m aware more and more that there is a disease in me. A constant burning. She wants to examine me again. I’m so used to taking my kit off for doctors that I’ve got my pants in my hand and I’m ready to go before she even pulls the curtain back.
When she presses on my stomach it’s so tender that tears come.
After this second severe pain event my partner and I sat down again with the endometriosis consultant. She was drawing things out on a piece of paper; a squiggly line that was my intestine and a dark circle where the endo had eaten away at it. I’d never seen my disease in picture form before. I know my consultant well now and looking at her scribbles I said, ‘I’m getting a sense of what you might have been like as a ten-year-old.’ We laughed. She took a breath and said, ‘look, the best way for you to really feel well is to have full excision surgery including a bowel resection and a full hysterectomy. That’s where we’ve seen the best results. Because you have two deep nodules on your bowel, it would have to be cut and then rejoined and if we feel it’s the right course of action we will put it in a stoma while your bowel heals.’
Wait, is she suggesting removing my womb entirely? And after all our efforts with surgical interventions and IVF, instead of a baby, our little bundle of joy could end up being a bag of poo?
There are over 200,000 people in the UK with a permanent or temporary stoma. Prominent figures such as artist Tracey Emin have opened up about the reality of it and there are amazing role models out there for living with them well. Most stoma wearers have cancer or significant enough bowel disease that without this medical intervention they would die. Stomas save precious irreplaceable lives every single day. With endometriosis part of its gift, and its complexity, is that the choice to have surgery is symptom driven and entirely up to you. Bowel endo is excruciatingly painful but it won’t kill you. Another consultant explained, ‘You’re ready to have surgery when you know that if you were to wake up with any number of complications you would still feel that the surgery was the only thing you could have done.’
The hospital organises for me to meet the stoma nurse team.
One of the warmest nurses I’ve ever met lifted my top and drew a large black spot to the right of my belly button with a permanent marker. It reminded me of the Black Spot in Treasure Island; the mark of betrayal for any pirate. Would I want it above my trouser line or below? The nurse said they draw the dot so that the surgeons know where to put it. She told me about shops that sell fancy underwear especially for stoma wearers and that often people give them funny names. One patient called his Boris Johnson, ‘because it’s full of shit’. I’d come alone to this appointment, not thinking it might be one where having support would be important. She got out a four-page pamphlet and showed me the first real life picture I’d ever seen of a stoma without the bag. I apologised as I felt teary suddenly . For some reason I’d always focused on the bag part, not the pink rubbery protrusion. I hadn’t realised it was literally your intestine coming out of your middle. Without the bag, it looked like a dog’s erection coming out of a stomach. As I instinctively held my middle, I thought about how ridiculous it was that so many people still think that endometriosis is just painful periods. In the car park another patient saw me wiping away tears and asked: ‘Can I give you a hug?’ As I shifted my body weight to adjust to a stranger’s arms, she said ‘I promise you it gets easier.’
That afternoon I delayed any surgery for a few months. The Black Spot kept appearing, unwanted, before my eyes.
A few weeks after the stoma conversation, we had our first chat with an adoption social worker. We were nervous divulging every aspect of our lives and particularly sharing the vulnerabilities around my health, but we were also excited. The lady on the phone suggested bringing my bowel and excision surgery forward. ‘A child experiences the illness of a parent as a loss and an adopted child will have already experienced a lot of loss in their life. Major surgery could be taken as a red flag in your application’. Trying to swallow the defensive streak around what I was feeling as an ableist sting, I let her words sink in. Illness as loss. Yes. I know that feeling. I had felt it in relation to my own life. The idea of my child feeling it too, because of me, was a hard pill to swallow. I felt both protective of my right to live with chronic illness and be a parent, but I could also see that trying to be as well as I could be would enable a child to feel safe and secure. So, the surgery had profound and possibly life-altering risks but not having it did too.
An unnatural paradox was beginning to form in my head: to have the best chance of becoming a mum, I needed to remove my womb.
The day after visiting Mên-an-Tol we make a trip to the small village of Zennor, where D. H. Lawrence briefly lived. Walking towards the church there, St Senara, I remember going to Bristol Cathedral during IVF the year before. Halfway through that process, in a hormonal fog, I had found myself heading to the cathedral. I lit a candle, knelt and prayed in my own misshapen agnostic millennial way. I then wandered around taking photos on my iPhone of all the baby Jesuses, on embroidered cushions and gilded statues – as if their digital capturing might conjure up some kind of magic. I mean, Mother Mary had a baby, and she didn’t even have to have sex. But it turns out iPhones aren’t magic. We only got one egg and it didn’t make it, which meant no backup. Excision surgery on my ovaries would more than likely be the end of our fertility journey.
Grief steps out again, and before I can stop her, performs the ritual of her familiar dance. No applause. We’ve seen it too many times before.
In St Senara’s Church I seek out the mermaid chair, a 15th century slab of ancient oak, whose arms depict a love story of the mermaid who lured Mathy Trewhella into the sea. An inversion of the little mermaid story, it was in fact the local man’s singing voice that first captured the mermaid’s heart. My heart was first captured by my partner’s voice too. He stood in front of a crowd at a storytelling gig in an old medieval tower in Hackney. I remember him holding the room saying something about a tree and some treasure, but mainly I remember the sound of his voice. That was over ten years ago now, and I’ve often felt guilty that our love story led us into the choppy waters of endometriosis, with all its associated heart ache.
My partner has taught me that looking to fairytales and legends can sometimes help find a path through life’s harder parts and the mermaid of Zennor doesn’t have an unhappy ending. Some years after Mathy followed his love to the underwater realm, a local fisherman was out at sea and heard a voice from the water: ‘Tell your captain to haul up your anchor. It’s lodged against the door of my home on the seabed, and I can’t get to Mathy and the children.’ The village of Zennor was told the news and rejoiced. Somehow, under all that water, Mathy Trewhella had learned to breathe.
I sit on the mermaid chair and take a deep breath. I discovered Tonglen meditation in the darkest days of early pain flares and it was one of the only survival tools that really worked. You breathe in the hard stuff – the hard feeling – and you breathe out what you hope for instead. Then you do the same for all the other people that might be having this experience. And there will be many. So, I breathe in all the medical trauma of the last few years and breathe out something softer and kinder. And then I breathe in all the people out there who are childless not by choice; my endo sisters, their hot sticky pain, and breathe out the strength to keep open and loving in the face of loss and long term illness. And then I make a decision, not because the consultant or social worker told me to, but because healing is partly about believing that, above all else, you deserve to be well.
My excision surgery is set for early December 2024. If the Black Spot becomes a reality, I will see it as our breathing apparatus.