The ‘Me’ in Endometriosis
Endometriosis is a condition where cells similar to the ones in the lining of the uterus are found around the body. Each month these cells react in the same way as those in the uterus-they build up and bleed, but with no way to escape the body this leads to inflammation, pain, and the formation of scar tissue.
In the UK alone around 1.5 million people assigned female at birth are currently living with endometriosis. It is estimated that 1 in 10 people assigned female at birth suffer from endometriosis, making it a condition as common as diabetes. So, that begs the question, why does endometriosis take so long to diagnose?
Firstly, it is hard to diagnose due to limited awareness of the condition - we don’t know how and why it develops. Furthermore, there is a gender pain gap. Historically women’s health research has suffered due to men making the decisions about where medical research funding is awarded. Moreover, women’s pain has not been taken as seriously because it is often attributed to an ‘over-emotional nature’ or ‘inability to handle pressure’.
Recently there has been an increase in conversations around the condition. Numerous charities such as Endometriosis UK and Endo Girl Gang raise awareness about the symptoms of endometriosis, creating a supportive community for many people across the world. Similarly, there has been an increase in doctors using their platforms to educate and inform people about endometriosis, such as Dr Brooke Vandermolen and Dr Martin Hirsch. Dr Vandermolen and Dr Hirsch both share information about endometriosis and female health issues on their Instagram platforms. They have recently done a collaborative video discussing the ‘5 signs you could have endometriosis’.
Alongside this, director Shannon Cohn has been directing documentaries about endometriosis. Her first film, ‘Endo What?’ came out in 2016 and sought to change the culture of misinformation about endometriosis and break down the barriers many women face when they try to get a diagnosis. Cohn herself has been living with endometriosis and has openly spoken about her own struggle getting a diagnosis: ‘I first had symptoms at 16 but didn’t hear the word endometriosis until I was 29. So, I spent 13 years searching for answers in a veritable revolving door of specialists, tests, and medications. So, when my OBGYN finally said offhandedly that she saw endometriosis during a surgery to remove a cyst, I had no idea what it was. So, I got my laptop and searched for it. I saw the statistics, and frankly, I was terrified. Not only about the health ramifications, I felt incredibly alone as my doctor clearly wasn’t informed about the disease.’ (Forbes, 2022)
Cohn has recently directed another documentary, ‘Below the Belt’ which shines a light on the issues within the healthcare system regarding women’s reproductive health. The documentary follows four patients in America who are looking for answers to their puzzling symptoms. The film reveals how millions of people suffer silently at the hands of endometriosis, with many women getting more information and support about their symptoms from Facebook than from their doctors. Executive producer, Rosario Dawson, gave this quote about the film:‘We deserve to be believed. We deserve to be understood. We deserve to be empowered to understand ourselves, our bodies and any medical treatments presented to us. We deserve better across the entire healthcare system. Below the Belt aims to revolutionise the status quo so that people with endometriosis get what we deserve – the right to live healthy, informed, fulfilling lives.’ (Below the Belt, 2022)
Cohn’s films have been applauded by medical professionals such as Dr Malcolm ‘Kip’ Mackenzie, an OB/GYN at Harvard Medical School who stated, ‘this film will change millions of lives around the world.’ Dr Mackenzie is correct. By having these open conversations around endometriosis, we can raise awareness. Women tend to subvert their pain and put everyone else ahead of themselves. We have been told to suffer in silence, that this pain is ‘normal’. However, if we do not stand up and say we aren’t going to accept this anymore, that we aren’t going to live like this anymore, no one is going to do it for us. We must be the ones to speak up - for ourselves and for everyone else around the world who suffers from endometriosis.
The symptoms of endometriosis can vary, with some people being badly affected and others having barely any symptoms. Some common symptoms of endometriosis are:
· Pain in your lower tummy or back (pelvic pain) – usually worse during your period
· Period pain that stops you doing your normal activities
· Pain during or after sex
· Pain when peeing or pooing during your period
· Feeling sick, constipation, diarrhoea, or blood in your pee or poo during your period
· Difficulty getting pregnant
· You may also have heavy periods, using a lot of pads or tampons, and you may bleed through your clothes
If you or a loved one think you are suffering from endometriosis, please visit your doctor. Dr Martin Hirsch has tips for talking to your doctor about endometriosis, and there is a link below to his Instagram page.
Please find links below to other useful Instagram pages, charities, and websites:
· Dr Martin Hirsch @endometriosis.surgeon.uk on Instagram
· Dr Brooke Vandermolen @theobgynmum on Instagram
· Endo Girl Gang @endogirlgang on Instagram
· Endometriosis UK @endometriosis.uk on Instagram and their website is: https://www.endometriosis-uk.org/?gclid=Cj0KCQiAvqGcBhCJARIsAFQ5ke7KwHYsJ-p6ylAEpNJRUNJ0db_8gw9ub1OIYX_8JAIah33egm0a9LEaAlzLEALw_wcB
· ‘Endo What?’ film can be found here: https://www.endowhat.com/watch-the-film/
· ‘Below the Belt’ film can be found here: https://www.belowthebelt.film/
· Forbes article: https://www.forbes.com/sites/jenniferpalumbo/2022/06/28/how-the-documentary-below-the-belt-shines-a-light-on-endometriosis/