Note: This is in no way medical advice, nor should this be used as a diagnostic tool.
Most of my friends in secondary school were on prescription painkillers to handle period pain. We had all been told that pain and discomfort were common during menstruation, and nobody really questioned it or even considered that there could be abnormal amounts of pain. I never questioned the pain that I experienced; the pain that made me have to miss classes due to unexplained nausea, be unable to stand or walk at times, or that even caused me to faint multiple times a day. For around 5 years, I didnât mention it to anyone. I thought we all were experiencing the same level of pain, and I just had a low pain tolerance. I remember being 14 years old and seeing the term âendometriosisâ online, it was validating and confusing; it explained everything I was experiencing and yet, I didnât understand that it could be a condition as that was, as I thought, normal.
Going to the doctors at 16 years old for suspected appendicitis was the eye-opener for me. I told my mum that I couldnât even walk up one flight of stairs as the pain in my stomach was so bad and having never heard me complain previously, she called my GP. They took full history and upon hearing that I had experienced similar symptoms for years, it was quickly noted that this was not an acute emergency but an ongoing condition. That appointment, terms such as PCOS, endometriosis, and adenomyosis were first mentioned to me. I had never really given any of them much thought and had certainly never thought that 3 years later I would have had abdominal surgery to diagnose endometriosis and adenomyosis. The one word that accurately summarizes how I felt at that time was confused.
Why had these conditions never been mentioned to me? Why were they not addressed in PSHRE education classes in secondary school? Where did I ever get the idea that this pain was normal? I was confused, but more importantly, I was frustrated. For years, I had believed I was overdramatic and bad at managing pain, when I had two serious gynaecological conditions that would later cause me to undergo surgery, traumatic A&E trips, and constant pain. A few days after this first appointment, it hit me that I was not the only one in this situation; gynaecological conditions often go unmentioned and unnoticed.
Endometriosis is the second-most common gynaecological condition with one in ten AFAB people having the condition. It can cause a range of symptoms, including but not limited to heavy bleeding, painful cramps, bloating and painful sex, but it can also cause a substantial impact on other aspects of life. People with endometriosis often struggle with fertility issues and a heightened risk of miscarriage; additionally, it has a great impact upon work with the Unique national research, external for Englandfinding that women with endometriosis earn less money at work due to needing additional time-off. This condition is not a minor discomfort that can be brushed aside by taking painkillers and âpushing throughâ, and yet, education and awareness on endometriosis is majorly lacking.
Since 2017, sex education has been compulsory on school curriculum, and there have been public consultations on what should be included on the curriculum. Menstrual cycles, menstrual health, relationships, and sex all feature within educational discussions. While there have been various campaigns and discussions of adding endometriosis to the curriculum, the guidance on this refers to âmenstrual wellbeingâ being addressed rather than any specific topics. Therefore, having spoken to several peers about this, everyone seems to agree that endometriosis and other gynaecological disorders either went completely unmentioned or mentioned purely in passing. This is obviously problematic. With the University of Michigan reporting that 70% of women with endometriosis experiencing symptoms before the age of twenty, there is a clear need for earlier awareness of the disorder, even if that simply be someone saying âif your pain is stopping you from doing daily activities, see a doctorâ.
Early diagnosis for endometriosis is incredibly important. Diagnosing and treating endometriosis in earlier stages can have promising outcomes which prevent further damage and harm, while equally providing the person with time to consider their treatment options. Therefore, it is incredibly disheartening to know that Endometriosis UK found that 54% of people do not know what endometriosis is at all (including 33% of women and a staggering 74% of men), and among those who know it is a gynaecological disorder, 35% cannot name a single symptom. These numbers should not reflect a disease that is found in up to 5% of the population and must force us to consider those who are potentially struggling with severe pain and symptoms without explanation.
For years, I thought my pain was normal, but thankfully, I have seen doctors who assured me it was not, and I was not being ridiculous in complaining (which I am extremely grateful for). However, this is not the case for many women; patients with gynaecological disorders often find doctors to not necessarily understand the extents of their condition, whether this be by minimizing their pain or assuming that the pill or an IUD will cure it. Without adequate education on endometriosis and other gynaecological disorders, people will not know to advocate for themselves and this only delays diagnosis and treatment even further. Therefore, while awareness and research has come quite far in the past few years, it is simply not enough.