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What is endometriosis? The lowdown from Endo UK

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As a proud supporter of Endometriosis UK, we called on their expertise to give us the lowdown on Endometriosis. Here, Faye from Endometriosis UK answers some of the most searched questions.

What is endometriosis?

Endometriosis is a condition where cells similar to the ones lining the womb are found elsewhere in the body, usually within the pelvic cavity. Each month these cells react to the menstrual cycle in the same way to those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape. This leads to inflammation, pain, and the formation of scar tissue (adhesions). The condition affects 1.5million in the UK; approximately 1 in 10 women and those assigned female at birth. The condition is most active from puberty to menopause, although the impact can be felt for life.

What are the symptoms?

Endometriosis symptoms can vary in intensity from one person to another. Whilst for some they may not experience symptoms at all, for others it can be debilitating. Whilst not every person will suffer from every symptom, common symptoms include:

  • Pelvic pain
  • Painful or irregular periods
  • Pain during or after sex
  • Painful bowel movements
  • Pain when urinating 
  • Fatigue
  • Difficulty getting pregnant

Many experience period pain, but if pain is interfering with your everyday live it’s best to see your doctor.

What are the biggest myths associated with the disease?

There are so many myths when it comes to endometriosis. Because of its association with the menstrual cycle, it’s all too often brushed under the carpet and considered taboo, which prevents people from having open conversations about it, seeking help, and society understanding the huge impact it can have on people’s lives. Far too many people are told their pain is normal, to “just get on with it”, that “it’s just part of being a woman”, or even that it’s all in their head.

The myth I hear the most is “endometriosis is just a bad period” – which always makes my eyes roll! In my job I talk to people every day about the devastating impact this condition can have on every aspect of their life – including people who have had to drop out of school, leave their career, lose relationships and face debilitating pain every day. It can be a whole-body disease, and one that robs people of so many aspects of their life, yet this myth still seems to manifest in our everyday lives. With more awareness, and companies like yourselves breaking down these taboos, I really hope this will soon become a thing of the past.

Other myths I hear all too often centre around endometriosis being curable. Sadly, there is currently no cure for endometriosis, and we don’t know what causes it. Far too many are told to “just get pregnant” or to “have a hysterectomy”. These outdated comments are both scientifically incorrect and incredibly painful to hear – especially when some people with endometriosis may face fertility struggles and may not want children. Nobody should have their treatment hindered because of their choices around fertility, nor feel they are being pressured into life choices that aren’t for them.

What does Endometriosis UK do to turn these myths around?

Endometriosis UK is working to drive positive change for the endometriosis community, and I do feel like we’re on the cusp of real change. We work with Governments across the UK, employers, amazing companies like TOTM, and healthcare practitioners to work towards everyone with endometriosis having access to the right care at the right time. It shouldn’t be the case that people are waiting on average 8 years for a diagnosis.

The endometriosis community is also incredible – and every day, people are sharing their experiences, supporting others, and breaking down taboos and barriers that many are facing. It’s so empowering to see people come together to ensure the next generation of people with endometriosis have it better than the last by raising awareness.

How can people get support?

If you need support, please do reach out to our support services. The pandemic has had a huge impact on people’s physical and mental health, and our community is here for you if you need it. We have an online forum, helpline, and support groups across the UK – many of which are currently meeting online – so you can meet others with the condition and get support.

You can find out more about Endometriosis UK at www.endometriosis-uk.org

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