Endometriosis is a long-term condition where cells like the ones found on the lining of the uterus are found outside the uterus. Each month these cells react in the same way to those in the uterus, building up and then breaking down and bleeding. Unlike the cells in the uterus that leave the body as a period, this blood has no way to escape. This can cause inflammation, pain, and the formation of scar tissue. 

Endometriosis can affect women and those assigned female at birth, from puberty to menopause but may persist after menopause. While some with endometriosis experience severe, life-impacting pain and /or infertility, others have no symptoms at all.

The content on this page is provided solely for information purposes and has been kindly reviewed by Endometriosis UK (March 2022). If you think you have endometriosis, please visit Endometriosis UK further information.


Endometriosis is an invisible disability

  • Wave icon
    Severe period pain is not ‘normal’ 
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    8 years  is the average time from onset of symptoms to get a diagnosis 
  • Globe icon
    Approx. 176 million  women, girls and those assigned females at birth, of reproductive age worldwide
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    38% are concerned about losing their job because of the effects of endometriosis
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    Infertility is experienced by 30-50% of those with endometriosis 
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    Pregnancy does not cure endometriosis 
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    Endometriosis stats & facts poster Download here

Endometriosis is a complex disease that affects at least 1 in 10 women, girls, and those assigned as female at birth globally, regardless of ethnic origin or social status.  Endometriosis causes a chronic inflammatory reaction that may result in scar tissue and adhesions developing within the pelvis and other parts of the body that may distort internal anatomy. 

Not everyone with endometriosis experiences symptoms and for others, it is so severe and debilitating that it impacts their life in significant ways. The pain often, but not always, correlates to the menstrual cycle – endometriosis can be unpredictable. 

Symptoms

Symptoms can vary in intensity and may be intermittent or continual and often improve after menopause, but in some cases can persist. Once diagnosed, the right individualised treatment aims to reduce the severity of symptoms and improve the quality of life for someone living with the condition. 

Symptoms are variable and broad and can include a combination of:

  • painful periods
  • pain during or after sex
  • painful bowel movements
  • infertility - it is estimated that 30-40% of those with endometriosis may not be able to have children
  • fatigue

In addition to the above, endometriosis may cause:

Pain symptoms

  • painful periods
  • pain on ovulation
  • pain during an internal examination
  • pain during or after sex
  • pelvic pain

Bleeding symptoms       

  • Heavy periods with or without clots
  • Prolonged bleeding
  • 'Spotting' or bleeding between periods
  • Heavy periods
  • Loss of 'old' or 'dark blood' before period

Bowel and bladder symptoms   

  • Painful bowel movements
  • Bleeding from the bowel
  • Symptoms of irritable bowel (diarrhoea, constipation, bloating - particularly during your period)
  • Pain when passing urine
  • Pain before or after passing urine or opening bowel

Other symptoms

  • Tiredness/lack of energy
  • Depression
  • Back pain
  • Leg pain

The content on this page is provided solely for information purposes. If you think that you. or someone you care for, has endometriosis, please seek further information.

Effects on and challenges faced in daily life 

  • General lack of awareness that distressing and life-altering pelvic pain is not normal
  • Many myths and misconceptions about endometriosis persist
  • Difficulty in fulfilling work and social commitments
  • Planning can be challenging as symptoms aren't always predictable
  • Considerable impact on day-to-day life including working lives, childcare, everyday tasks and social lives
  • Concern about school, job and employment prospects as a result of having endometriosis
  • Discrimination in the workplace
  • Interruption or avoidance of intercourse and affect the sexual health of affected individuals and/or their partner

Assistance and support you can offer

Every non-visible condition and impairment is experienced differently, and it is not possible to generalise the recommendations below for all. 

  • find out about endometriosis and be aware of what the symptoms may be
  • do not make assumptions about how Endometriosis affects someone - find out from them how you can support them
  • be aware that the person with endometriosis may need to re-arrange or cancel plans depending on the severity of their symptoms

Workplace considerations to think about*

Every non-visible condition and impairment is experienced differently, and it is not possible to generalise the suggestions below for all. Good practice would be to have a conversion with the employee to understand their individual need and to help identify the workplace adjustments best suited for their needs.

Considering workplace adjustments should begin within the recruitment stage: this can be through offering alternative ways to apply for job roles and ensuring there is mention of any workplace adjustments needed for the full recruitment process.

  • Introduce and maintain a Workplace Passport
  • Raise awareness of Endometriosis to enable a culture where employees are comfortable to talk about endometriosis
  • Offer flexible working - if someone is experiencing endometriosis, they may feel more comfortable working from home if they are experiencing high symptoms
  • Offer paid/unpaid leave for medical appointments

Working environment:

  • Offer extended time away from the desk
  • Offer options for pain management: e.g., let them bring their hot water bottle to work
  • Proactively plan to support staff and managers to be able to have conversations when needed, overcoming any stigma, embarrassment or taboo of talking about menstrual issues

 

Workplace considerations

Information for workplace adjustments are provided in partnership with Purple. Purple have used their research, expert knowledge and lived experience to suggest reasonable workplace adjustments for selected non-visible conditions and impairments. Each condition is experienced differently, and you cannot generalise these recommendations as they will not be suited for everyone who identifies with that specific condition. Good practice would be to engage with employees to help identify the workplace adjustments best suited for their needs.

Purple is a leading disability organisation that works with businesses of all sizes and across all industries to support their disability journey. To find out how Purple can help you, please click here.


Sources:

Bupa: https://www.bupa.co.uk/womens-health/endometriosis-support
Endometriosis UK: https://www.endometriosis-uk.org/
Endometriosis.org: https://endometriosis.org/
Endometriosis World: https://endometriosisworld.weebly.com/
Human Fertilisation and Embryology Authority: https://www.hfea.gov.uk/ 
NHS: https://www.nhs.uk/conditions/endometriosis/ 
World Health Organisation: https://www.who.int/news-room/fact-sheets/detail/endometriosis 


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For further information, please visit Endometriosis UK:

Endometriosis can devastate the lives of not only those with the disease but also their families. We help them take back control. One in ten women and those assigned female at birth are living with endometriosis. That’s over 1.5 million who desperately need support and information to help them understand this chronic condition.

We're here to provide vital support services, reliable information and a community for those affected by endometriosis. We're a very small organisation, striving for big results.

If you want to commit to developing a work environment and culture that enable employees with endometriosis to thrive at work, visit  https://www.endometriosis-uk.org/endometriosis-friendly-employer-scheme

Endometrioisis UK