"While I Wait" (2024)

Mixed media: fabric dye, paper, acrylic paint, foil, wood, embroidery thread, sequins, nails, screws and glass beads on cotton.

"While I Wait" is a personal project inspired by my own health journey and my own experiences while seeking an endometriosis diagnosis. It represents not just the physical manifestation of endometriosis inside the body, but also the anxiety, long wait times, and other experiences associated with seeking a diagnosis. My intent for this piece was to create a thing of sad beauty, something that turns this ugly, unreachable pain into a tangible object, something beautiful, something that I could accept but also something I could control.

It is part of me. It uses scraps of fabric from my prom dress and underwear, and phrases taken from my pre-appointment prep notes. It is adorned with souvenirs of my experiences - scraps of appointment letters and foil from packets of painkillers. Unfolded it is bigger than I am, but while folded for display it holds hidden pockets of things you can only see by walking around it and getting up close. It is stitched and scarred like my skin. It is forever changed, with threads, sequins, beads and circles of different textures of fabric added to show an artist's rendition of the internal scars and adhesions caused by endometriosis. By using this medium, I have also created something that while technically possible to entirely unpick, leaves the cotton 'canvas' forever changed, damaged, and beyond repair.

"While I Wait" has been submitted to the Royal Academy Summer Exhibition (2025), pending shortlisting. The theme for this year's submissions is "Dialogue" - this piece was created to encourage conversation around menstrual health, and to raise awareness of how long it can take to get a diagnosis.

"While I Wait" - the story behind the art

Endometriosis is a chronic condition affecting 1 in 10 women and those assigned female at birth. Despite its prevalence, it can take 8+ years to obtain a diagnosis, and because menstrual health is not a widely discussed topic, it can often be an incredibly lonely, painful and isolating journey.

I have suffered from incredibly painful and heavy periods for most of my adult life, often leading to me bleeding through onto my clothes, or feeling feverish and faint with pain. I remember being so tired in lectures that I was unable to focus, or I would fall asleep in the middle of making dinner (much to the delight of my flatmates at the time). There were times at work where I was in so much pain that I would be sat on the floor behind the display fridges, shaking, nauseous and feverish - and having periods so heavy that I would need to wear 'night' pads during the day with frequent changes, and sleep with a towel underneath me to avoid staining my bedsheets. My mental health was also in shreds - I was spending all of my energy working and whenever I wasn't working, I slept. It got to a point where I was walking around in a daze, feeling like I was trapped in a bubble and floating through life.

In 2019, after countless GP appointments, scans and prescriptions that didn't really help (including some NSAIDs, antidepressants and anti-anxiety medications), my GP finally recommended long-lasting contraception as a possible solution. I had the Mirena coil fitted and within a few months my periods had almost completely stopped. For me, this was like a miracle. All of a sudden I had energy again - I was no longer having to take naps in the office in the middle of the workday, and I stopped falling asleep in the middle of cooking dinner. My periods got lighter and lighter and then stopped completely - to a point where I didn't need to buy period products at all. I no longer had to keep painkillers on my bedside table, and (despite the 'everything' of 2020), got my mental health back to a positive place.

This 'peace' lasted for about 4.5 years, but by 2023 my symptoms had started to return again. I began experiencing headaches and then migraines that coincided with my periods. Over time my symptoms started getting worse - I was regularly so fatigued that I would need to nap between meetings, I was suffering monthly with migraines and pelvic pain that was gradually getting worse. I would often end up on the floor, unable to speak, wanting to tear open my skin and pull out my uterus if that would stop the pain. I remember trying to go for a walk one weekend, and barely being able to walk 1km before needing to sit on a bench and wanting to cry because I was so incredibly fatigued. Later in the year, I could barely walk to the street corner (<100m) before needing to sit down.

I was referred to gynaecology, but waited for around 12 months before my first appointment was booked in. When the referral appointment finally came around, I was ignored and my symptoms were deemed to be because of my weight. I was referred to dermatology and told to lose 10kg, and I left the appointment feeling absolutely disgusted, lost, angry, and hopeless.

Desperate for some relief, I attempted to get my coil replaced by the NHS but this was denied, leading to me paying to have this replaced privately and experiencing the most excruciating, blinding pain of my life where this was embedded into the wall of my uterus, removed, and then placed again. I considered going private for surgery too, and spent hours exploring private clinics and specialist doctors, and any other avenues I could think of in order to get some answers and (hopefully) some relief.

By mid-2024 (and after a complaint), I had gained the courage to ask my doctor whether endometriosis was a possibility. He agreed, and in October I finally underwent a diagnostic laparoscopy to confirm the source of my pain. Having surgery felt like an extreme way forward, but I was so desperate that I was willing to undergo all the risks, all the pain and recovery just to get some answers, and I'm still under no doubts that this was the right choice for me. The wait for the surgery was absolutely full of anxiety and once I was given a date, I didn't sleep at all - all I could think about was finally knowing, finally finding out what was wrong with me even if nothing could really be done about it at all.

My surgeon found and removed an ovarian cyst and a fibroid, both of which were tested for endometriosis which came back negative. He also confirmed (both via an ultrasound and during surgery) that I have adenomyosis, a condition similar to endometriosis where the womb lining grows inside the muscle of the womb, and for which there is no cure. The jury is still out on whether I have PCOS too (one to confirm at my next appointment).

Things have been a little better these past few months - my periods have become less regular again, and I'm now suffering from symptoms for only a few days at a time, rather than at times needing to take a full week off work. When I do have a period the symptoms are still severe, but nowhere near as bad as they were at their peak - and I'm now comfortable going out for a day without needing to take strong painkillers and a TENS machine with me "just in case". The story pauses there for now until I next speak to my consultant, and then I'm sure will start again - but for now, I'm just trying to take a break and enjoy the 'good days' where I can.