As I reflect on Endometriosis Awareness month, I am always surprised about how little people know about a condition that affects around 200 million people worldwide – an equal amount to women suffering with diabetes. With period and sex chats becoming more normalized and open, why is a disease that affects one in ten women not also a well-known (or well-hated) household-name condition?
I received my Endometriosis diagnosis when I was seventeen, and at University I am faced with a lot of ‘endo-what?’. Fear not! I have a well-rehearsed spiel at the ready. It goes something like: ‘Oh, it’s a womb condition I have. You know how cells build up, break down and bleed, during a period? Well there’s tissue that behaves in a similar way, that is found elsewhere like on my ovaries or fallopian tubes. The blood has nowhere to go so it forms scar tissue. This tissue can flare up which means things like painful periods and painful sex.’
Simple. Endometriosis is a rough deal some people get on their period. Right?
Wrong. So wrong. For fellow womb bearers – I say this as it is not only women who suffer with endo but trans men and nonbinary folk too – endometriosis is a debilitating, life-long chronic illness that seeps into all aspects of life. It means unpredictable flare ups of pain, fatigue, heavy bleeding, bloating and a high risk of infertility. Yet 45% women cannot name any of these symptoms and 33% have never even heard of it. For men, this stat goes up to 74%. It affects your ability to work, study, what you can and cannot eat, if you play sports, and when you can socialize. It strips you of your freedom. As a student, endo is categorically a vibe killer: booze, bingeing, societies, and studies become harder to juggle when there is a chronic illness in the mix. But the real kicker? There’s no known cure, no known cause, and very limited treatment. To be quite honest, it’s a shocker of a hand to be dealt, especially when you are told these are the best years of your life.
But living the reality, these stats are far from surprising. Surgeries, empty pill packets, ileostomies, scarring, scaly hot-water-bottle rash, and catheters are all hidden away because no one knows what it is. A general lack of awareness by healthcare providers and wider society normalizes the traumatic and life-altering experiences sufferers have and contributes to an average diagnostic delay of seven-and-a-half years. Most people will visit the GP ten or more times, and it’s common for three or more visits to be made to A&E before receiving a diagnosis. It is a long and demoralising journey and doing it at Uni can be lonely.
When the diagnosis eventually comes, it brings validation, relief and understanding. But when a general lack of awareness persists, this recognition feels completely individualised and internal. 64% of young people aged 16-24 have never heard of endometriosis, hence the well-rehearsed spiel, but how does this help the way sufferers view ourselves and the condition? Moving to a new city where no-one knows you or can conceptualise your experience is daunting. If most of your peers don’t know about it, how real can it be?
By the time diagnosis arrives, it’s too late. The way in which medical institutions, education systems and society have downplayed the illness becomes internalised. You begin to gaslight yourself. Maybe it really isn’t that bad. It took fifteen-year-old me to be hospitalised and seven pairs of hands to carry out physical examinations in the space of one morning to be told there was nothing wrong. I was sent home with paracetamol. And I still couldn’t even get a referral to a gynaecologist. No one knew what was wrong with me. So maybe what was wrong with me, was that it was all in my head?
Consistent medical gaslighting like this – where pain is normalised and symptoms are dismissed – would make anyone doubt their own sanity of mind and explains why so many people with endometriosis suffer with their mental health. It is hard to keep pushing for diagnosis when you are consistently sent away with a not-very-new, not-very-flashy hormone treatment to try. Being told to keep the coil for the next year in the hope that your body will adjust, or failing that, pregnancy or a hysterectomy will offer a final solution, is not good enough. Pain management is not a long-term solution, especially when side-effects can be funky.
Last year’s APPG report confirmed some pretty damning suspicions of mine. 81% of Endo sufferers surveyed said that Endometriosis has impacted their mental health, whilst depression, anxiety and suicidal thoughts are referenced throughout. More than 9 out of 10 said they would have liked to have received psychological support but were never offered it, with 89% claiming they felt isolated due to their condition.
Student populations are already at the mercy of a mental health epidemic – this is only to be compounded for endometriosis sufferers. Quality of life is bound to decrease when you feel so alone.
The report’s recommendation? Listen to patients. My recommendation? Listen to patients.
If we could cultivate an environment in which sufferers felt they were taken seriously and could talk openly and freely about their experiences, maybe diagnostic delay would decrease, mental health would improve, and navigating University with this incredibly common chronic illness would feel less like a lost uphill battle.
If you suffer from endometriosis, you are not alone. Odds are that on your floor of eddy b, there’s about 15 people going through the same thing. That’s around 50 at Beaverworks, and around 2000 people University-wide. We all know sharing is caring, and in the case of endo, it really, truly is. So, trust yourself and reach out to your pals. Chances are you will meet someone who knows exactly what you’re banging on about.
If anything touched on in this article feels familiar, find solace in the endo community: the pain is not normal, and you deserve better.
Here’s some sites I find useful:
www.endometriosis-uk.org, www.thisendolife.com
@cystersgroup @endo_black and follow the hashtag: #thisisendometriosis
Header image credit: Everyday Health