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Home » Women's healthcare » What is it like to be a person with endometriosis without proper care?
Women's Healthcare Q1 2023

What is it like to be a person with endometriosis without proper care?

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Faye Farthing

Head of Campaigns and Communications, Endometriosis UK

Endometriosis is a condition where cells similar to the ones lining the womb are found elsewhere in the body. Each month, these cells react to the menstrual cycle in the same way as those in the womb, building up, then breaking down and bleeding.

Unlike the cells in the womb that leave the body as a period, blood has no way to escape. This leads to inflammation, pain and the formation of scar tissue (adhesions). Endometriosis affects 1.5 million 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.

Endometriosis symptoms

Symptoms can vary in intensity from one person to another. Some may not experience symptoms at all; for others, it can be debilitating. Not every person will suffer from every symptom.

Common symptoms include chronic pelvic pain, painful periods, pain during or after sex, pain when urinating, painful bladder and bowel movements, fatigue and difficulty getting pregnant. Many experience period pain. If pain is interfering with your everyday life, it’s best to see your doctor.

For too long, people with endometriosis have had their symptoms dismissed. Meanwhile, the disease can progress over time and can have a devastating impact on all aspects of someone’s life including education, careers, relationships and mental health.

For too long, people with endometriosis
have had their symptoms dismissed.

Accessing endometriosis care

We need to see an overhaul of the way the NHS prioritises patients so those in need get access to care. This requires strategic capacity planning of endometriosis care, without people continuing to face unacceptable waiting times.

The women’s health strategy for England promised some exciting change, but they must ensure the plans are backed by an adequate workforce, funding and strategic planning.

Endometriosis guidelines

National Institute for Health and Care Excellence (NICE) is reviewing part of their guideline on endometriosis, including diagnosis and the use of imaging, surgical management and surgical management where fertility is a priority.

It is the baseline for how care should be provided, but there are worrying gaps, and we look forward to working with NICE to address these as part of their agreed review.

People with endometriosis must be given the support they need — in the workplace, at school and in further education, amongst friends and family and within clinical settings. March is Endometriosis Action Month — a time to rally together and demand change. It’s a chance to call on society to wake up and stop the injustice and ignorance surrounding this incurable and sometimes debilitating disease.

If you want to join us this Endometriosis Action Month, head to:

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