Managing Endometriosis, Adenomyosis and Fibroids in the Workplace

Introduction
Endometriosis
Adenomyosis
Fibroids
Endometriosis, adenomyosis and fibroids as an equality issue
Reasonable adjustments
Endometriosis, adenomyosis and fibroids as a gender-sensitive health and safety issue
Gender and occupational safety and health policy checklist
Endometriosis, adenomyosis and fibroids as a workplace issue
What can we expect from employers?
What can we expect from the NASUWT?
Additional support
 

Introduction

Adenomyosis, endometriosis and fibroids are most commonly referred to as women’s health conditions. [1]

It is estimated that in the UK, around 1 in 10 women have adenomyosis and that it is most common in women in their late 30s to 50 who have had children. [2] Adenomyosis is woefully neglected and is often misdiagnosed as endometriosis or fibroids.

Around 1 in 10 women of reproductive age will suffer with endometriosis. [3] It generally affects women in their 30s and 40s but again can affect any woman who menstruates.

Endometriosis is the most recognised condition of the two but this has taken many years of campaigning on behalf of sufferers to get to this level of awareness.

Condition Symptoms Treatment
Endometriosis The lining cells of the womb are displaced to the pelvic area, away from the womb. No cure
Mirena coil
Contraceptive pill
Hysterectomy
Adenomyosis The lining cells remain in the womb and cluster together to form ‘nests’ in the muscle walls. The menopause is the only cure
Mirena coil
Contraceptive pill
Hysterectomy
Fibroids Fibroids are non-cancerous muscle balls that are located in or around the walls of the womb. Medication
Fibroid embolisation - a non-surgical procedure that selectively blocks blood vessels

Fibroids are non-cancerous muscle balls that are located in or around the walls of the womb.

Fibroids have been included in this section as some of the symptoms experienced can have serious consequences for women in the workplace and may require ‘reasonable adjustments’ from employers, whilst women are waiting for treatment.

Many women suffering with endometriosis or adenomyosis will often be misdiagnosed with fibroids before the correct diagnosis is reached.

Afro-Caribbean women are more likely to suffer with fibroids and also have multiple fibroids compared to white women.

Endometriosis

Endometriosis affects about 2 million women a year [4], takes on average 7.5 years to diagnose and is the second most common gynaecological condition in the UK. [5] It can affect all people who have a womb and or menstruate, regardless of race or ethnicity.

Endometriosis costs the UK approximately £8.2bn per annum in lost working time and healthcare costs. [6]

Endometriosis is a long-term chronic condition that can significantly impact on a woman’s physical health, emotional wellbeing and daily routine. [7] It is a debilitating condition that at its worst can lead to infertility, severe fatigue, bladder and bowel problems.

Endometriosis occurs when the lining cells of the womb are displaced from the womb into the pelvis. Each month, like the cells in the womb lining, these rogue cells bleed. The bleeding cells in the womb lining pass away via the vagina when a woman has a period. For women suffering with endometriosis, there is nowhere for the bleeding cells to go to, leaving pain, inflammation, scar tissue and cysts.

Signs and symptoms
  • Inability to conceive.
  • Chronic fatigue/lack of energy.
  • Migraines.
  • Difficulties at work.
  • Depression/isolation.
  • Other non-medical problems.
  • Problems with sex life.
  • Anaemia.
  • Difficulties with friendships/relationships.

NB. This is not an exhaustive list.

There is no cure for endometriosis but there is a range of treatments available to sufferers. Treatments aim to reduce the severity of symptoms and improve the quality of life for a woman living with the condition.

Some women find that lifestyle changes, such as exercise and following a healthy, well-balanced diet, can help relieve some of the symptoms.

Medical treatments include anti-inflammatory painkillers, the contraceptive pill and the Mirena coil (IUS). A hysterectomy is a drastic treatment that is often offered but rarely cures the condition. All treatments tend to be temporary measures.

For some women, surgery is needed to treat or remove the endometriotic tissue, especially when scar tissue and/or cysts are present. This can be temporary as the tissue is likely to return. Surgery can also lead to further complications such as infection and damage to other organs surrounding the affected area.

Trans and non-binary people can have endometriosis. In many cases, they have suffered in silence due to a range of issues, not least the gendered nature of this condition.

Adenomyosis

Adenomyosis is a common condition suffered by 1 in 10 women who menstruate, yet is a relatively unknown condition. The condition affects the muscle wall of the womb where the lining cells form ‘nest clusters’.

Treatment is often delayed due to misdiagnosis.

Signs and symptoms

There are a range of signs and symptoms that can include:

  • Heavy menstrual bleeding for prolonged periods of time.
  • Dysmenorrhoea - severe cramps and pain during menstruation.
  • Uterine enlargement.
  • Spotting between periods.
  • Pain after sex that can last up to 24 hours.
  • A ‘dragging’ or ‘heavy’ sensation in the womb.
  • Chronic pain located in the middle of the pelvis.
  • Anaemia.
  • Migraines.
  • Possibility of a slight increase in early miscarriage (although this is not conclusive).

NB. This is not an exhaustive list.

Treatment

Any person concerned about their symptoms should consult a heath professional in the first instance.

Treatment includes the Mirena coil (IUS), the contraceptive pill (temporary measures) and in extreme cases a hysterectomy.

The only known cure for the vast majority of sufferers is the menopause as even a hysterectomy may not rid sufferers of pain. This is due to the nervous system rewiring itself.

When first seeking help from your GP, sufferers are advised to mention the following:

  • Inform your GP the pain is period-related.
  • Mention the heaviness of your period and refer to dragging and heavy sensation in the womb.
  • Pain during or (for adenomyosis) after sex. [8]

Fibroids

Fibroids are non-cancerous muscle balls that are located in or around the walls of the womb. It is estimated that 1 in 4 women of reproductive age have a uterine fibroid (UF). [11]

Many women are unaware they have fibroids because they do not have any symptoms, but they tend to develop when women’s oestrogen levels are high and and reduce with the onset of the menopause when oestrogen drops.

By the time a woman begins the menopause, it is estimated that 8 in 10 women will suffer with fibroids. [10]

Women who do have symptoms (around 1 in 3) may experience:

  • heavy, irregular and painful periods;
  • tummy (abdominal) pain;
  • lower back pain;
  • pressure or pain in the pelvis;
  • a frequent need to urinate;
  • constipation;
  • painful bowel movements;
  • pain or discomfort during sex.

In rare cases, further complications caused by fibroids can affect pregnancy or cause infertility.

You are advised to make an appointment to see their GP if you suspect fibroids. An ultrasound scan will be able to provide a diagnosis.

It is thought that fibroids occur more often in overweight or obese women because being overweight increases the level of oestrogen in the body.

Women who have had children have a lower risk of developing fibroids and the risk decreases further the more children you have.

Treatment

Treatment will only be required once the symptoms begin to cause problems for the sufferer.

As teachers, heavy bleeding, chronic pain and increased toilet problems could cause severe discomfort and problems for women in the workplace and members and activists alike should consider this.

Medicine is the first course of treatment as well as blocking the blood supply to the fibroid. Interestingly, this is also something that is being considered as a possible treatment of adenomyosis.

Endometriosis, adenomyosis and fibroids as an equality issue

The UK equality laws stipulate that employers have a legal duty to provide ‘reasonable adjustments’ for members identified as disabled. There are also other equality law protections afforded to members suffering with debilitating symptoms.

Reasonable adjustments (as defined by the Equality Act 2010, s.20)

The duty to make reasonable adjustments require employers to take positive action to remove certain disadvantages to disabled people posed by working practices and the physical features of premises.

Examples of reasonable adjustments that could be considered:

  • Access to cold drinking water.
  • Access to toilets.
  • Access to adjustable temperature control.
  • Adequate and flexible breaks.
  • Possible job alternatives.
  • Flexible working.
  • Time to attend medical appointments.

Members should be advised to submit requests for reasonable adjustments to the employer under the legal obligations of the Equality Act 2010.

NASUWT members are not expected to navigate the equality laws in isolation and are strongly advised to contact their Local Secretary and or National or Regional Centre for support and advice.

Endometriosis, adenomyosis and fibroids as a gender-sensitive health and safety issue

Information about endometriosis, adenomyosis and fibroids as a gender-sensitive health and safety issue is available in the TUC Gender in Occupational Safety and Health resource.

The Health and Safety at Work etc. Act 1974 and the Health and Safety at Work (Northern Ireland) Order 1978 require employers to ensure the health, safety and welfare of their workers and take measures to control any risk that is identified.

Employers are required to carry out risk assessments under the Management of Health and Safety at Work Regulations 1999 (UK-wide) and the Management of Health and Safety at Work Regulations (Northern Ireland) 2000, NI Regulation 3(1), which should include any specific risks to women diagnosed with endometriosis, adenomyosis or fibroids.

Men and women have physical, physiological and psychological differences that can determine how risks affect them.

In the past, less attention has been given to the health and safety needs of women. A gender-sensitive approach acknowledges and makes visible the differences that exist between male and female workers, identifying their differing risks and proposing control measures so that effective solutions are provided for everyone.

Being aware of the issues relating to gender in occupational health and safety ensures unions strive to ensure that workplaces are safer and healthier for everyone.

Endometriosis, adenomyosis and fibroids are recognised occupational health issues and should therefore be addressed at school and college level. The NASUWT believes that all workplaces should have an effective gender-sensitive policy that is entirely consistent with the statutory provisions of the:

  • Equality Act 2010 (England, Scotland and Wales).
  • Health and Safety at Work etc. Act 1974.
  • The Workplace (Health, Safety and Welfare) Regulations 1992.
  • The Management of Health and Safety at Work Regulations 1999, GB Regulations 4.
  • The Public Sector Equality Duty (PSED) introduced by the Equality Act 2010 (England, Scotland and Wales).
Northern Ireland
  • The Management of Health and Safety at Work Regulations (Northern Ireland) 2000, NI Regulation 3(1).
  • Health and Safety at Work (Northern Ireland) Order 1978.
  • Sex Discrimination Order 1976 (Amendment) Regulations (Northern Ireland) 2008.
  • Disability Discrimination Act 1995 (NI).
  • Section 75 of the Northern Ireland Act 1998.
  • Sex Discrimination (Gender Reassignment) Regulations (Northern Ireland) 1999.

Gender and occupational safety and health (GOSH) policy checklist

The NASUWT believes that a fair, transparent and consistent policy, which recognises the importance of a gender-sensitive checklist, is an essential element of effective school management.

Gender-sensitive policies which accord with the provisions in this checklist will help to recruit, retain and motivate teachers whilst minimising the risk of grievance and discrimination.

The checklist sets out the minimum requirements for an effective gender-sensitive policy and is entirely consistent with the statutory provisions of Section 2 of the Health and Safety at Work etc. Act 1974, the Workplace (Health, Safety and Welfare) Regulations 1992 and the PSED introduced by the Equality Act 2010.

It is essential that the employer and trade unions have the necessary negotiating machinery in place to consult and negotiate on health and safety changes and gender equality.

The GOSH ‘gender-sensitivity’ policy should include:

  • an acknowledgment that the employer’s health and safety policy recognises that there are sex and gender differences in occupational safety and health (OSH);
  • a commitment from the employer that OSH will be addressed;
  • a commitment from the employer that they will consult with all workers and their representatives about OSH issues, including risk assessments;
  • a commitment from employers that there will be an appropriate gender balance on the Joint Health and Safety Committee (JHSC) or other consultative bodies;
  • an agreement that OSH will be a standing agenda item on appropriate consultative bodies;
  • risk assessments will be carried out by an appropriately trained staff member and will take account of sex and gender differences. Risk Assessments will be carried out for:
    • expectant (at each stage of pregnancy), new and nursing mothers;
    • reproductive health concerns of men and women (e.g. prostrate cancer, fertility, menstruation, menopause, endometriosis, adenomyosis, fibroids, breast cancer or hysterectomy).

The law requires employers to assess the risk of stress-related ill health arising from work activities in the same way as any other hazard. All workplaces should have an effective gender-sensitive policy that is consistent with statutory provisions.

Risk assessments should consider the specific needs of women suffering with endometriosis, adenomyosis or fibroids and should ensure that the working environment will not make their symptoms worse. Issues that need looking at include temperature, ventilation, toilet and shower facilities and access to safe/quiet spaces. It is important that workplace stress is also considered and addressed properly using the Health and Safety Executive (HSE) stress management standards.

Endometriosis, adenomyosis and fibroids as a workplace issue

It is important that trade unions raise these conditions in the workplace and make sure that employers are aware of their responsibilities to ensure that conditions in the workplace do not make the symptoms of endometriosis, adenomyosis and fibroids worse.

It is also important that women experiencing endometriosis, adenomyosis or fibroids know where and who to go to for help and support in the workplace and also feel confident to raise issues in the workplace.

NASUWT Representatives play a key role in supporting members and helping to challenge workplace discrimination and harassment, including that linked to the aforementioned conditions.

Workplace Representatives should consider the following in the workplace:

Get organised

Consult with members to find out what they need in school/college.

Set up a Health and Safety Committee

If two or more trade unions submit a request to the employer in writing, they must by law set up a Health and Safety Committee within an agreed timeframe. Put endometriosis, adenomyosis and fibroids on the agenda.

Women members should consider becoming Health and Safety Representatives

Further information can be found on our page about becoming a Health and Safety Rep.

Consider a workplace campaign/support group

This is something members can do for themselves. Maybe you could negotiate with employers for a quiet meeting room with access to tea/coffee/water.

Addressing workplace issues

The grid below has been adapted from a TUC model and has been specifically tailored to meet teachers’ needs. It is not an exhaustive list. Members should use the criteria and amend to meet their particular needs.

Symptom Examples of workplace
factors which could worsen or
interact with symptoms
Suggested adjustments
Chronic pain/fatigue Lack of access to rest breaks or suitable break areas. Hot flushes and facial redness may cause women to feel self-conscious, or the sensation may affect concentration or train of thought. Be flexible about additional breaks. Allow time out and access to fresh air.
Ensure a quiet area/room is available.
Ensure cover is available so workers can leave their posts if needed.
Insomnia or sleep
Disturbance/chronic fatigue
Rigid start/finish times and lack of flexible working options may increase fatigue at work due to lack of sleep. Consider temporary adjustment of hours to accommodate any difficulties.
Allow flexible working.
Provide the option of alternative tasks/duties.
Make allowance for potential additional need for sickness absence.
Reassure workers that they will not be penalised or suffer detriment if they require adjustments to workload or performance management targets.
Urinary problems; for example,
increased frequency, urgency,
and increased risk of urinary
infections
Lack of access to adequate toilet facilities may increase the risk of infection and cause distress, embarrassment and an increase in stress levels.
Staff member may need to access toilet facilities more frequently, may need to drink more fluids and may feel unwell.
Ensure easy access to toilet and washroom facilities.
Allow for more frequent breaks during work to go to the toilet.
Ensure easy access to supply of cold drinking water.
Take account of peripatetic workers schedules and allow them to access facilities during
their working day.
Make allowances for potential additional need for sickness absence.
Irregular and/or heavy periods Lack of access to adequate toilet facilities may increase the risk of infection and cause distress, embarrassment and an increase in stress levels. Staff member may need to access toilet and washroom facilities more frequently. Ensure easy access to well maintained toilet and washroom or shower facilities.
Allow for more frequent breaks in work to go to the toilet/
washroom.
Ensure sanitary products readily available.
Take account of peripatetic workers schedules and allow them to access facilities during their working day.
Ensure cover is available so staff can leave their posts if needed.
Muscular aches and bone and
joint pains
Lifting and moving, as well as work involving repetitive movements or adopting static postures, may be more uncomfortable and there may be an increased risk of injury. Make any necessary adjustments through review of risk assessments and work
schedules/tasks and keep under review.
Consider providing alternative lower-risk tasks.
Follow Health and Safety Executive (HSE) guidance and advice on manual handling and preventing MSDs (musculoskeletal disorders).
Psychological symptoms, for
example, depression, anxiety, panic attacks, mood changes, loss of confidence
Excessive workloads, unsupportive management and colleagues, perceived
stigma around the conditions, bullying and harassment and any form of work-related stress may exacerbate symptoms.
Stress can have wide-ranging negative effects on mental and physical health and wellbeing.
Performance and workplace relationships may be affected.
Carry out a stress risk assessment and address work-related stress through
implementation of the HSE’s management standards.
Ensure that workers will not be penalised or suffer detriment if they require adjustments to workload, tasks or performance management targets.
Ensure that managers understand the conditions and are prepared to discuss any concerns that staff may have in a supportive manner. Ensure managers have a positive attitude and understand that they should offer adjustments to workload and tasks if needed.
Allow flexible/home working.
Make allowance for potential additional need for sickness absence.
Ensure that staff are trained in mental health awareness.
Raise general awareness of issues around the conditions so colleagues are more likely to be supportive.
Provide opportunities to network with colleagues experiencing similar issues
Ensure a quiet area/room is available.
Provide access to counselling services.
Psychological symptoms associated with chronic fatigue, such as memory problems, difficulty concentrating Certain tasks may become more difficult to carry out temporarily; for example, learning new skills (may be compounded by lack of sleep and fatigue), performance may be affected and work-related stress may exacerbate these
symptoms. Loss of confidence may result.
Carry out a stress risk assessment and address work-related stress through implementation of the HSE’s management standards.
Reassure workers that they will not be penalised or suffer detriment if they require adjustments to workload or performance management targets.
Ensure that managers understand the conditions and are prepared to discuss any concerns that staff may have in a supportive manner. Ensure managers have a positive attitude and understand that they should offer adjustments to workload and tasks if needed.
Reduce demands if workload identified as an issue. Provide additional time to complete
tasks if needed, or consider substituting with alternative tasks.
Allow flexible/home working.
Offer and facilitate alternative methods of communicating tasks and planning of work to assist memory.
Ensure a quiet area/room is available.
Provide access to counselling services.

What can we expect from employers?

Employers should ensure that all managers recognise the three conditions as both health and safety and equality issues.

Workplace Representatives and/or Health and Safety Representatives should be pushing for the following:

  • Training for managers and staff.
  • Clear policies developed in consultation with the NASUWT and other unions.
  • Awareness-raising.
  • Ensuring risk assessments take the needs of women experiencing symptoms of either of the three conditions into account and that measures to control risks are implemented.
  • Establishing recognised points of contact within the workplace.
  • Improving access to support within the workplace. These can include support groups and buddying schemes.
  • Providing ‘decent’ teaching/management jobs - this means offering flexible working to women, whatever their position.

Employers should recognise their responsibilities under the Health and Safety at Work Act in relation to women and ensure that risk assessments take the specific needs of women experiencing endometriosis, adenomyosis or fibroids into account.

What support can members expect from the NASUWT?

  • Trade unions can help by raising awareness of endometriosis, adenomyosis or fibroids with employers and challenging discrimination.
  • Representatives can provide confidential advice and support.
  • Unions can provide individualised representation and support to members affected by endometriosis, adenomyosis and fibroids and also represent members collectively.
  • Unions can offer workplace/Local Association training for all members on endometriosis, adenomyosis and fibroids.
  • The NASUWT nationally has produced guidance on supporting members in schools and colleges.

Additional support

NHS - www.nhs.uk
Endometriosis UK - www.endometriosis-uk.org
Adenomyosis Advice Association - www.adenomyosisadviceassociation.org
Pelvic Pain Support Network - www.pelvicpain.org.uk, [email protected]
Hysterectomy Association - www.hysterectomy-association.org.uk, [email protected]
Women Talking Fibroids - www.talkingfibroids.com


Footnotes
[1] Whilst it is acknowledged these are gendered conditions, they affect all people with a uterus and sensitivity should be applied at all times. Where women are referred to throughout the document, this includes trans and non-binary people.
[2] Guy’s and St Thomas’ NHS Foundation Trust, Adenomyosis, patient-information
[3] www.endometriosis-uk.org
[4] Cosmopolitan, Why does it take so long to get a diagnosis for endometriosis? Daniella Scott, Oct 2020.
[5] Royal College of Obstetricians and Gynaecologists, Sept 2017.
[6] The burden of endometriosis: costs and quality of life of women with endometriosis and treated in referral centres, Simoens S, Dunselman G, Dirksen C, et al, 2012.
[7] Professor Nick Raine-Fenning. MRC Centre for Reproductive Health in Edinburgh
[8] All adenomyosis information has been taken from a discussion video with Consultant Gynaecologist, Liza Ball.
[9] www.talkingfibroids.com
[10] www.talkingfibroids.com