‘Nobody Deserves To Be Convinced Into Silencing Their Body’s Pain’: My Endometriosis Story
By Grace Pickford
2 am. A deep cutting sensation in my abdomen travels to my pelvis and chest. The intensity is breathtaking. I try to scream for help but the sound is only a whisper from my lips into the thick midnight air. I grasp my boyfriend as the agony cripples my entire body.
This pain continued through the day and into the new night. Period pain – I was sure of it. I was bleeding through pads, towels, clothes and sheets. It wasn’t until I went numb that I allowed them to take me to the hospital. I hadn’t wanted to waste anyone’s time.
We arrived and I couldn’t walk. I was immediately put in a wheelchair, floppy and pale, with a fever and high blood pressure. I was rushed into the ward and put on a drip of morphine. Finally, sleep came. This was the first day of a long journey that I didn't realise had begun many years before. A journey that would unfold into the next year in a turbulent and blurry cascade.
My periods were hot red pokers when I was 16. Until I went on the pill for acne, as my doctor recommended, and it all went away: the pain, the symptoms and the bleeding. I was twenty-three when I decided to come off the pill. The first period after I did was a grasping-the-toilet, puddle-on-the-floor, call-my-mum …mess. I suppose that was the beginning. The first sign. But it was just period pain. Right?
Three periods passed until that moment at 2 am.
Sat in a hospital bed, I was passed between scans and doctors. ‘It’s appendicitis!’, ‘It’s the kidneys.’ Whoosh into a week of antibiotic drips and silent night hospital ward tears. Then, a voice of reason: ‘You have two large abscesses on both your left and right ovaries, but the antibiotics should take them away.’ Deep breath. Abscesses. I can cope with that.
‘Grace?’ A male voice. ‘Your ovaries are completely damaged; you will be infertile after this.’ A crying mum, a pale boyfriend, a confused self. Do I even want kids? Why is everyone so upset? I’m fine. Right?
I was released from the hospital a week later with the promise that the antibiotics had worked. If anything happened I should call my GP. Perfect. A month passed, and the midnight air took my breath once again. I called my GP in desperation and was told that it was just residual pain, and to take stronger painkillers. Would I like to go on the pill again? No no no. ‘I’m sorry, I can’t help you. Ovarian abscesses don’t cause pain.’ I called the hospital with fear trembling in my voice. I just needed to give it time, they said; I was still in reparation.
The next month, and the next month, the pain returned. My desperate calls landed on deaf ears. This was my new reality. I decided to get myself ready for the next battle and researched the best pain management tools and invested in a TENS machine, teas, herbal remedies, heat pads and cool pads. My bag was ready so that if I had an attack at work, I would deal with it. Well, deal with it as best I could.
However, it soon became clear that the pain was no longer on a monthly schedule. It was at random intervals. I was living in and out of pain and post-pain crashes. My body was exhausted. But I kept going. To work. To the gym. I smiled. And I lay in bed every night grasping at the midnight monster that appeared in my stomach and travelled through my limbs.
Eventually, there was a day at work when an attack left me in the first aid room with a worried HR woman demanding that I go to A&E. So I did. They did a scan and told me they saw a cyst on my left ovary (an Endometrioma). Ah, okay. I had heard this word before. Endometriosis? ‘No, no, don’t worry, it’s not related to that.’ Most cysts just go away on their own. Not to worry. So, I didn’t.
Time passed. Then, another bad attack. A grasp-the-toilet, call-your-mum, puddle-on-the-floor attack. I couldn’t take it anymore. I went back to A&E and was scanned again. The cyst had grown to 10x10cm. It was attached to my pelvis and had moved my bowel and bladder. It was the size of a three-month foetus.
It needed to come out, the nurse told me. I would be put on the list and contacted when there was an opening. This would be in at least one year. One year. Echoing echoing. I wasn’t sure if I can do this for another year. It had already been nine months.
Initially, I didn’t want to go private – couldn’t. I couldn’t ask for that from my family, couldn’t take that when there were so many women who could never even consider it. I had to tough this out. But my grandma called to plead with me. ‘You don't have to tough it out, Grace. You’re too good to be sad. We can all chip in. Please accept it.’
So I did. Three months later, I booked in for a private surgery to have the cyst removed. I was fingered and prodded by another man in a white suit. The surgery was smooth. A one-day job. In and out. Confirmed Endo. I went home to my parents’ house to rest for two weeks and recovered slowly but surely without any complications. I was cured. I could walk. I could sleep.
I felt empty.
This was a miracle, yet why did I feel like a part of me had been taken away in the process? I felt violated. I felt embarrassed. I felt weak. I felt vulnerable. My boyfriend had lifted me out of the bath on too many occasions. Had had to listen to me cry too many times. Had held my hand when false information was shared too many times. I, and he, were drained.
Endometriosis is incurable. I know it will grow back and I will meet the midnight monster again. But I have found ways to handle the day-to-day symptoms of bloating, skin problems, hair problems and mood swings. I have altered my lifestyle to make room for this new tenant.
From now on I will trust myself. I will listen to my body when it cries out for help and demand it. Because nobody deserves to be convinced into silencing their body’s pain. Pain is not normal. Pain is not tolerable. And it shouldn’t have to be.
Grace is fighting to gain awareness around Endometriosis to increase access to research, funds and treatment options. You can support her @whatapaininthe on Instagram.