ON ENDOMETRIOSIS

What is Endometriosis?

Endometriosis is an incurable, chronic whole body disease, where abnormal tissue forms lesions, nodules, and cysts on organs and structures throughout the body. It is primarily associated with inflammation and intense uterine pain.

Why does it matter?

Despite an estimated economic burden as high as $78–119 billion annually, endometriosis is under-researched, undervalued, and consistently ignored, often for years. You might not have heard of it, yet you’re likely to know someone who has it - endometriosis affects 1 in 10 women and menstruators.

Why is it under-researched and under-funded?

Despite being about as common as diabetes and heart disease, endometriosis reflects the same gender bias in research funding seen in other “female-centered” diseases, garnering only a fraction of the support allocated to conditions that affect both genders. AKA, patriarchy, baby!

Why does it take so long to get a diagnosis?

It takes an average of 7-10 years to get a diagnosis, let alone treatment. There’s a few main reasons.

1. Cases of endometriosis are under-reported because pain is often dismissed as something normal. If someone has painful periods and tells this to a mother or doctor, they might just say, “Cramps are supposed to hurt.” While common, period pain should never be normalized.

2. Endometriosis rarely shows up on an MRI or ultrasound, meaning, the primary way to spot it is through laparoscopic “keyhole” surgery. There are less than 100 certified endometriosis surgeons in the U.S. who are skilled and up-to-date on the “gold standard“ of endometriosis treatment - expert excision (meaning someone who knows what to look for and what they’re doing cuts it out).

3. Sometimes people do get a surgery - and unfortunately, their OBGYN isn’t skilled enough to know what to look for and may rule endometriosis out (or perhaps they see it and may perform ablation - burning it away - which has an 80% reoccurrence rate and often causes more scar tissue and issues down the road for the patient).

4. Misinformation and misconceptions. Some doctors and people untrained in endometriosis may think hormonal birth control, anti-inflammatory diets, and even pregnancy treats the disease, so opt for those first before confirming through surgery. While these methods might help with some symptoms, research has shown it does not stop the progression of disease.

How can I help someone I know with endometriosis?

Firstly, believing that their pain is real and trying to be understanding when it forces a change of plans or requires adapting goes a long way - they probably hate being limited, so reassurance that it’s okay builds trust and compassion.

Second, thoughtful ideas like drawing a bath, heating up hot water bottles, carrying around disposable heat pads for emergencies, back or leg rubs (sometimes with numbing or muscle relaxing creams), pillows under the feet to take pressure off the lower back, or sometimes just giving space - those are all wonderful, invaluable things you can do to help.