BBC Study on Endometriosis Shares How Thousands Are Affected

Last updated: March 2020

It wasn't even 6 a.m. yet, and I had a text message about endometriosis. A couple of hours later I had another one. Two male friends wanted me to see a BBC article. When I checked my Google alerts, the same piece was in the top three endo stories.

What's the big news?

With the help of Endometriosis UK, a charity group, the BBC surveyed 13,500 women with endometriosis.1 The goal: To find out how far-reaching endometriosis could be in someone's life. The study didn't just ask about pain; there were questions about every aspect of life. It's the largest study like this that's ever been done.2

The results resonated with my own experience; doctors don't quite understand the disease, how to help patients, or how life-encompassing endo can be when it's not treated. And like many people around the world, women go for years — it takes an average of 7.5 years to get diagnosed in the UK — with chronic pain and no explanation. And even when they do get medicine or surgery, they often don't feel better long-term.1

Women who were interviewed for the BBC story spoke up about how the process made them angry, confused, and sad. Here are some of their other experiences:1

  • Doctors dismissed their pain.
  • It can take more than a decade to get diagnosed.
  • A flare feels like sitting on a hot knife.
  • It feels like their organs are being squeezed.
  • They can't wear tampons.
  • They've been diagnosed with irritable bowel syndrome or other conditions.
  • Some of their doctors had never heard of endo.
  • Pain can start as early as 9.
  • Some have attempted suicide.

The BBC study also showed:1,2

  • About half of women with endo have had suicidal thoughts.
  • Many take pain medication daily.
  • Some are addicted to opioids.
  • Endo negatively affects education, career, and relationships.
  • Surgery and menopause-inducing drugs don't always bring relief.
  • Chronic pain can affect mental health.

What happens next?

Anna Turley, an MP in the All-Party Parliamentary Group for Endometriosis, was hospitalized and diagnosed with endometriosis. That's when she realized how little research and funding goes into studying endo, reported the BBC. The APPG for Endometriosis is now looking to find out more about endometriosis. They'll talk to women with endo and doctors who treat it. Afterward, they'll share their suggestions with their government.2

The APPG also wants the NHS — the UK's national health care system — to invest in endo research and provide more support for women who have it.

Hopefully, this new awareness gets the world one step closer to understanding endometriosis. This may lead to some answers for women with endo and better treatment options in the future.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Endometriosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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