Name the Pain
Alex Epshtein
When I was 9, I got my first period. My mum explained that it was a celebration, it meant I was fertile! However, I soon realized that this time of the month would only bring anxiety, pain and suffering to my life. I spent weeks clutching hot water-bottles until my stomach turned red, vomiting and drowning in painkillers. When I told my father about the pain he told me that “women are always so overly emotional, they cry about everything.” My mum went on to reassure me the pain was normal, hers disappeared after childbirth and mine probably would too. I just needed to hang on until then. The school nurses agreed and explained that I should always carry painkillers with me, especially during exam periods, just in case.
But, I was scared to see a doctor. I thought to myself, what if they gave me “the pill" and I gained weight? What if I became depressed or anxious, or any other side effect on a list so long it could be a duvet? They could give me an IUD or implant, and I’d already heard the horror stories about those from the internet and from some of my friends who had them. How they are inserted with no anesthesia and the terrible cramps that go on for weeks after.
Eventually, the pain became unbearable. My friends forced me to call my GP. They warned me, urged me to research my symptoms and provide the doctor a list of potential ailments upon arrival, otherwise they wouldn’t take me seriously, especially if he were male. So, I turned to google. Was it PCOS? Cervical cancer? A burst ovarian cyst? Was I dying? What if I just had a low pain threshold? Was it normal? Am I being dramatic like my dad said? I spent 25% of the next ten years in excruciating pain, wondering what was wrong with me.
Last year, I was diagnosed with endometriosis.
Endometriosis is a disease where tissue similar to the lining of the uterus grows outside the uterus, causing pain and/or infertility. Endometriosis affects roughly 10% (190 million) of reproductive age women and girls globally, however it is often misdiagnosed as PCOS or irritable bowel syndrome (IBS). My doctor explained that it is often misdiagnosed or ruled out unless specifically brought to their attention because it is often too difficult to judge whether period cramps (the main indicator of endometriosis) are as painful as they are made out to be, as each woman’s pain is so individualized.
The label didn’t really change much. I was prescribed a pill and my symptoms went away, but they told me to come back when I turned 21 so they could check my progression. They said if the pain ever comes back, I should email a clinician and they’ll be able to provide me with a doctor’s note to excuse me from work or school.
Most women go through excruciating pain everyday and do not have an excuse. No excuse to miss school, take a day off work or see a doctor, because pain accompanying periods is ‘normal’. Something we, as women, should all expect and be prepared for. It’s a standard taught and set by men who have never experienced menstruation, continuously perpetuated by the miseducation of female anatomy, and results in misunderstanding and misdiagnosis. It’s a cycle that needs to be stopped in order for women to gain control over their bodies. The responsibility is once again individualized to women, to know their bodies, their symptoms, and even their potential diagnoses before even seeing a doctor. I believe there needs to be a structural systematic change where the female anatomy and female experience with these diseases is properly included in sex education classes in school and university, so cramps are not ‘downplayed’, and women’s suffering stops being disregarded by doctors writ large.
Alex Epshtein is a final year student at King's College London, studying Global Health and Social Medicine. While at university, their eyes were opened to the world of reproductive healthcare and the gender driven research gap within the field. They have dedicated their degree to researching and studying potential policies to alleviate this inequality, focusing on topics ranging from biotechnology to neuroscience. This piece is a glimpse into their personal struggle within the field.
