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The latest facts and figures about endometriosis.

1 in 10 women of reproductive age in the UK suffer from endometriosis.

10% of women world wide have endometriosis - that's 176 million worldwide.

The prevalence of endometriosis in women with infertility be as high as to 30-50%.²

Endometriosis is the second most common gynaecological condition in the UK.3

Endometriosis affects 1.5 million women, a similar number of women affected by diabetes.

On average it takes 7.5 years from onset of symptoms to get a diagnosis.

Endometriosis costs the UK economy £8.2bn a year in treatment, loss of work and healthcare costs.

The cause of endometriosis is unknown and there is no definite cure.

References for Endometriosis Facts and Figures
, D'Hooghe TM , Fazleabas A , et al. Priorities for endometriosis research: recommendations from an international consensus workshop. Reprod Sci 2009;16(4):335-46.

Meuleman C, Vandenabeele B, Fieuws S, Spiessens C, Timmerman D, D'Hooghe T. High prevalence of endometriosis in infertile women with normal ovulation and normospermic partners. Fertil Steril 2009;92(1):68-74.

3. University College London Hospitals. General information about Endometriosis. Accessed February 2014.

Diabetes UK: Diabetes prevalence 2012. (April 2012). Diabetes affects around 2.9 million people, of which slightly less than half of this are women.

Diagnosis Survey. Endometriosis UK. February 2011.

A total 2890 women with endometriosis took part in a public awareness survey for Endometriosis UK. The average time given for diagnosis time from symptoms to diagnosis was 7.5 years. A similar finding of 7.4 years was found in:

Arruda MS, Petta CA, Abrão MS, Benetti‐Pinto CL. Time elapsed from onset of symptoms to diagnosis of endometriosis in a cohort study of Brazilian women. Hum Reprod 2003;18(4):756-759.

Simoens S, Dunselman G, Dirksen C, et al. 6. The burden of endometriosis: costs and quality of life of women with endometriosis and treated in referral centres. Hum Reprod 2012;27(5):1292-9.

As a charity, Endometriosis UK relies on support from people like you. If you found this page helpful please consider making a donation. Thank you.

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The latest facts and figures about endometriosis. 1 in 10 women of reproductive age in the UK suffer from endometriosis. 10% of women world wide have endometriosis - that's 176 million worldwide.

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Endometriosis and Adenomyosis; A Workplace Issue | UNISON National

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Endometriosis and Adenomyosis are chronic and painful conditions where cells from the lining of the womb are deposited in other parts of the body instead of being lost during menstruation. These cells continue to change in size and bleed in response to a woman's normal menstrual cycle.

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September is Polycystic Ovary Syndrome or PCOS Awareness Month. PCOS is a serious genetic, hormone, metabolic and reproductive disorder[1] and is thought to be the most common endocrine disorder[2] affecting women and girls. As such, it is a disorder with a wide array of symptoms and effects on a woman's* life and work. The aim of PCOS Awareness Month is to help improve the lives of those affected by PCOS and to assist them in overcoming their symptoms as well as prevent and reduce their risks for life-threatening related diseases and conditions such as diabetes, heart and liver disease, strokes and cancer.

As with many conditions that predominantly affect women, there is a monumental need for more research and training, further discussion and increased awareness on this highly complex issue.

Dealing with PCOS and its knock-on effects has a massive impact on an employee's life and so, as it is PCOS Awareness Month, we wanted to provide an employer's guide to PCOS. We hope that you will be able to better understand this common but often puzzling condition and better cater to your female employees' needs as a result. After all, an employee who feels that they are supported and that their needs are being met will pay that value forward tenfold!

*anyone assigned female at birth, including trans and non-binary individuals

What is Polycystic Ovary Syndrome?

PCOS essentially starts with the act of ovulation. Ovulation occurs when a mature egg is released from an ovary. This happens so that it can be fertilised by a male sperm. If the egg is not fertilised, it is sent out of the body during a woman's period. In some cases, a woman doesn't make enough of the hormones needed to ovulate and so, when ovulation doesn't occur, the ovaries can develop many small cysts. These cysts make hormones called androgens, the so-called male sex hormones. These hormones are indeed normally present in women but usually only in small amounts. The increase in androgens in a woman's body can cause more problems with her menstrual cycle and it can be the cause of many of the symptoms associated with PCOS. It is important to note, however, that some women with this disorder do not have cysts, while some women without the disorder do develop cysts. The exact cause of PCOS is not clear, however, someone may be more likely to have PCOS if their mother or sister has it or if they have an insulin resistance or are obese.[3] Treatment for PCOS is often done with medication, surgery and lifestyle and diet changes. These treatments cannot cure PCOS fully, but they can help reduce symptoms and prevent some health problems.[4]

Polycystic ovary syndrome (PCOS):

Affects millions of women and AFAB individuals in the UK and worldwide

Runs in families

Is one of the leading causes of fertility problems in women

If not properly managed, can lead to additional health problems in later life

Can have an impact on appearance and self-esteem

Signs and symptoms of PCOS:

PCOS is often described as a constellation of symptoms. Symptoms of PCOS will usually become apparent in a woman's late teens or early 20s.[5] Not all women with PCOS will have all of the symptoms and each symptom can vary from mild to severe. Some women will only experience menstrual problems while some will have no menstrual problems, but are unable to conceive; some may have both. To determine if a woman has PCOS, a doctor will usually check for at least two of these three symptoms:

1. Irregular periods or no periods at all, caused from lack of ovulation.

2. Higher than normal levels of androgens (male hormones) that may result in excess hair on the face and body, acne, or thinning scalp hair and male-pattern baldness.

The myriad physical symptoms of this disorder are overwhelming even on their own but coupled with severe hormonal imbalances, this disorder can also end up having a major impact on a woman's mental health and, therefore, ability to manage her disorder, her job and her life. Women with PCOS have higher rates of anxiety and depression than women without PCOS, and even more alarmingly, women with PCOS are seven times more likely to commit suicide than non-PCOS women[7] . The symptoms of PCOS are not just extremely vast, but also severe.

Who is affected?

PCOS is generally thought to affect between 3% and 10% of women but global prevalence is estimated to be between 6% and 26%.[8] Based on the high degree of variability and inconsistencies between the different diagnostic criteria, even getting to the point of diagnosis is extremely difficult. There are countless women who remain undiagnosed even after visiting multiple healthcare providers as a result of lack of knowledge, resources and simply because of the way we treat women in the healthcare system. As with many women's health conditions, studies conducted on the subjects across the world are limited by small sample size, selection bias, and lack of comparability across studies. Some studies have shown some differences in prevalence between geographical location and race but, again, the data is not conclusive enough to reach a definitive verdict on the matter.[9] What we do know, however, is that PCOS is so common that you are highly likely to know at least one, if not more, woman in your life suffering from the condition.

What is the impact of PCOS on women?

The impact of PCOS on women is boundless. Although associated with women of child-bearing age, this lifelong health condition continues far beyond child-bearing years with infertility, ironically, being one of the most common and exhausting side effects of the condition. Even if a woman manages to get pregnant, the risks of miscarriage and premature death are very high. Having PCOS can also increase your chances of developing other health problems in later life. For example, women with PCOS are at increased risk of developing diabetes, high blood pressure and high cholesterol and sleep apnoea. Some women struggle with the more obvious physical symptoms of PCOS, such as weight gain, hair growth, and acne. Women's looks are so heavily scrutinised in our society that even something like gaining weight or having an extra bit of hair growth that may appear frivolous on the surface can have devastating consequences on a woman's life. Some women have reported feeling "freakish, abnormal and not proper women"[10] with one woman saying "it's not very feminine to have a moustache."[11] While there is no definitive cure for many of these issues, cosmetic treatments, such as electrolysis and laser hair removal, can help although one could argue that it might be easier to simply alter traditional feminine norms instead of associating hairlessness with femininity and punishing women as a result of non-conformance. Women have described having no control over their condition saying "it controls me sometimes" and how it affects their relationships as they no longer "feel sexy"[12] and so, the impacts and effects of PCOS are extremely far-reaching and often devastating.

PCOS and Work

Although empirical evidence is lacking in this area, there is little doubt that PCOS can and does impact women at work and in their career. As Kathrin Folkend, Founder of Perla Health explains, "We often talk about how important it is to show up for yourself, to bring your best self to work. For those struggling with PCOS however, this can be difficult at times. Common symptoms like overweight, infertility, acne, hair loss or hair growth often have a severe impact on a woman's mental health. I encourage employers and managers to educate themselves about PCOS and more generally women's health in order to best support their employees."

What can you do to support employees with PCOS?

As a woman's work and job make up a large amount of her life, it is only natural to assume that these issues will affect her work in some capacity. However, it is very plausible that you, as an employer, will never have even heard about PCOS and will never have noticed anything wrong with a female employee or colleague. Women are often lauded for how they 'cover up' their symptoms and 'push through' despite the pain and struggles.

Instead of praising women for how they deal with a vast array of menstrual and reproductive disorders, we should collectively redirect that energy towards research and healthcare and support so that women don't have to 'push through the pain' anymore.

As an employer, you may not think it is your place to interfere in your employees' health, but there are several ways that you can support someone with PCOS without getting too heavily involved with something they may not feel comfortable discussing or want to keep private.

Firstly providing comprehensive health insurance is key. This is important for the obvious doctor's appointments and potential medications, but especially important for things like dieticians and nutritionists which are often fundamental in managing PCOS.

Flexible working arrangements are also extraordinarily helpful. Someone with PCOS may need to attend various doctor's appointments and should be encouraged to find a schedule that suits them while also getting their work done.

A compassionate work culture built on empathy is also crucial; understanding that we are all going through something and that giving someone the benefit of the doubt may be worth a lot more to you in the long run than a reprimand in the short run. Understanding that even when you think you know, you won't and can't ever fully know what it feels like to experience PCOS, is also critical.

Finally, fostering a supportive work culture and being an example to your employees of how to treat others is key to creating an environment where someone with PCOS feels supported.

On a practical level, providing free period products in toilets, making sure employees have access to clean washrooms with sanitary bins, and ensuring staff are able to take regular breaks can all help to support PCOS and general menstrual health. You might also consider introducing a menstrual leave policy to provide additional guidance, protection and support.

Further information, guidance and support

1. Perla Health - https://perlahealth.com/

2. PCOS Summit September 2020 - https://pcos-summit.perlahealth.com/schedule/

3. NHS Guidance - https://www.nhs.uk/conditions/polycystic-ovary-syndrome-pcos/symptoms/

4. Cysters - http://cysters.org/

5. Verity UK PCOS charity - https://www.verity-pcos.org.uk/

Positive action

Polycystic Ovary Syndrome is an extremely complex condition with lifelong repercussions for a woman's well-being. This PCOS Awareness Month, we encourage you to educate yourself as well as your wider company on PCOS and foster a working culture where conditions like this are treated with seriousness and compassion. It is highly likely that you have someone working for or with you who is suffering from the many symptoms of PCOS and they may be quietly struggling. We hope that this guide has armed you with the first thing you need to make a difference in the life of someone with PCOS: education and that you will continue to seek out information on this ever-developing area of women's health and encourage discussion around this topic in your workplace.

Sources

[1] https://www.verity-pcos.org.uk/what-is-pcos.html

[2] Wolf WM, Wattick RA, Kinkade ON, Olfert MD. Geographical Prevalence of Polycystic Ovary Syndrome as Determined by Region and Race/Ethnicity. Int J Environ Res Public Health. 2018;15(11):2589. Published 2018 Nov 20. doi:10.3390/ijerph15112589

[3] https://www.cdc.gov/diabetes/basics/pcos.html

[4] https://www.hopkinsmedicine.org/health/conditions-and-diseases/polycystic-ovary-syndrome-pcos

[5] https://www.nhs.uk/conditions/polycystic-ovary-syndrome-pcos/symptoms/

[6] https://www.mayoclinic.org/diseases-conditions/pcos/symptoms-causes/syc-20353439#:~:text=Polycystic%20ovary%20syndrome%20(PCOS)%20is,fail%20to%20regularly%20release%20eggs.

[7] Månsson M, Holte J, Landin-Wilhelmsen K, Dahlgren E, Johansson A, Landén M. Women with polycystic ovary syndrome are often depressed or anxious--a case control study. Psychoneuroendocrinology. 2008;33(8):1132-1138. doi:10.1016/j.psyneuen.2008.06.003

[8] Rao, Manisha MSa; Broughton, K. Shane PhDb; LeMieux, Monique J. PhDb Cross-sectional Study on the Knowledge and Prevalence of PCOS at a Multiethnic University, Progress in Preventive Medicine: June 2020 - Volume 5 - Issue 2 - p e0028 doi: 10.1097/pp9.0000000000000028

[9] Wolf WM, Wattick RA, Kinkade ON, Olfert MD. Geographical Prevalence of Polycystic Ovary Syndrome as Determined by Region and Race/Ethnicity. Int J Environ Res Public Health. 2018;15(11):2589. Published 2018 Nov 20. doi:10.3390/ijerph15112589

[10] Varcoe C. Women with polycystic ovarian syndrome had excess hair, irregular or absent menstruation, and infertility and felt freakish, abnormal, and not proper women. Evid Based Nurs. 2003;6(1):30. doi:10.1136/ebn.6.1.30

[11] Pfister G, Rømer K. "It's not very feminine to have a moustache": Experiences of Danish women with polycystic ovary syndrome. Health Care Women Int. 2017;38(2):167-186. doi:10.1080/07399332.2016.1236108

[12] Hadjiconstantinou M, Mani H, Patel N, et al. Understanding and supporting women with polycystic ovary syndrome: a qualitative study in an ethnically diverse UK sample. Endocr Connect. 2017;6(5):323-330. doi:10.1530/EC-17-0053

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An Employer's Guide to Polycystic Ovary Syndrome (PCOS)

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September is Polycystic Ovary Syndrome or PCOS Awareness Month. PCOS is a serious genetic, hormone, metabolic and reproductive disorder[1] and is thought to be the most common endocrine disorder[2] affecting women and girls. As such, it is a disorder with a wide array of symptoms and effects on a woman's* life and work.

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In this webinar, we talk to Consultant Gynaecologist Liza Ball about adenomyosis. We discuss what the condition is, the symptoms, and how to help manage the condition. If you are concerned that you may have adenomyosis, please consult your medical practictioner.

Disclaimer: Whilst this video contains medically checked and qualified information, please always consult your GP if you have concerns about your condition or symptoms.

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In this webinar, we talk to Consultant Gynaecologist Liza Ball about adenomyosis. We discuss what the condition is, the symptoms, and how to help manage the condition. If you are concerned that you may have adenomyosis, please consult your medical practictioner.

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Although the condition is not commonly discussed in the workplace, endometriosis can cause a lot of pain and discomfort
What is endometriosis?
The tissue lining of the womb is called endometrium, and endometriosis is a condition where this lining tissue is found outside the womb in other parts of the pelvis. There can be patches on the ovaries, the fallopian tubes and even on the bowels or bladder.

We don't fully know how many women suffer with endometriosis as there is a huge spectrum of symptoms. Often the condition can be mild and remain undiagnosed. It can happen at any age but is common between 25 and 40. There is still no consensus on what causes endometriosis. It can run in families and it probably has a hormonal or immunological cause.

Symptoms can vary depending on the size of the patch of endometrial tissue that is outside the womb and its location or locations. Symptoms include painful periods, pain during sex, and pelvic or lower abdominal pain before or during periods. It can also cause difficulties in getting pregnant. If the patches are on the bowels or bladder it can be painful to open the bowels or pass urine.
Further reading Five steps to improve menopause support Taboo health conditions stall women's workplace productivity Allow women to attend cervical screenings during work Why period pain is everybody's business What does treatment actually entail?
Currently there is no cure for endometriosis. Employees with the condition should consult a GP who can assess their symptoms and take them through treatment options. These can range from simple painkillers to the hormonal contraceptive pill or coil. Treatment options can also include a small operation to remove patches of endometrial tissue that is outside the womb, which can be done through keyhole surgery these days.

Depending on the severity of the symptoms, female employees who suffer with endometriosis may take time off work cyclically, sometimes for prolonged periods of time. Relying on painkillers or the contraceptive option, while relatively simple, can be problematic for women with other medical problems or who wish to conceive. Laparoscopy (keyhole surgery) outcomes depend on the severity of the endometriosis and the extent of removal. In-patient stays range from one to five days depending on how much had to be removed and from where.

Sometimes women must have catheters put in and if they cannot successfully pass urine after their procedure they may be sent home with one. It would be unreasonable for employees to be expected to return to work in such circumstances. There are the scars themselves, which can be mildly painful and run the risk of infection. Vaginal bleeding and sluggish bowels are also known issues following laparoscopic surgery.

Naturally all of these treatment options could have an impact on a person's performance at work.
Is it a disability and how can employers help?
While living with endometriosis can be extremely difficult this is not recognised as a disability in the UK. This is because endometriosis, much like many other chronic conditions, has such a varying degree of impact on individuals, who should be assessed on a case-by-case basis.

Charities and support groups such as Endometriosis UK do not want endometriosis recognised as a disability, arguing that women may be disadvantaged at the workplace by such recognition. Employers could discriminate against women by deeming them unable to carry out certain roles and duties.

While it can be debilitating for some, many women are actually able to function perfectly well at work and home. However, as with anybody with a chronic medical condition, those struggling with work because of endometriosis should be supported by HR and management.

One way to achieve this is by offering them the necessary time off work, followed by flexible working options, so they can undergo the necessary tests, treatment and then fully recover. Emotional support from another female employee in management or HR might also go a long way in making the employee with endometriosis feel valued and secure.

Employers must recognise endometriosis as a chronic and often extremely difficult condition to manage. It must never be trivialised and seen as a 'hormonally-difficult time' for the woman. It must be treated with sympathy, which can often be difficult in a male-dominated environment.

The support of a GP, Endometriosis UK and specialists is invaluable in ensuring employers have a full grasp of the gravitas of a chronic, often unpublicised condition such as endometriosis.
Preethi Daniel is a GP and medical director at London Doctors Clinic

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HR Magazine - Endometriosis: Everything HR needs to know

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Although the condition is not commonly discussed in the workplace, endometriosis can cause a lot of pain and discomfort What is endometriosis? The tissue lining of the womb is called endometrium, and endometriosis is a condition where this lining tissue is found outside the womb in other parts of the pelvis.

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Endometriosis is a condition where tissue similar to that in the lining of the womb grows elsewhere in the body, such as on the ovaries and in the fallopian tubes. It is unclear why this happens, but it is thought that cells in the lining of the womb may be carried to the pelvis during a woman's period.

Symptoms can include lower abdomen or back pain, severe pain during periods, pain during sex, bowel and bladder symptoms, and fertility problems. The symptoms can vary for different women, with some more severely affected than others. Endometriosis can have a significant impact on some women's lives and can lead to feelings of depression and relationship problems.

Endometriosis usually affects women during their reproductive years but can affect women of any age. It is not known how many women are affected by endometriosis in the UK, there are no official figures collected on prevalence but a figure commonly cited is that it is estimated to affect 1 in 10 women. In 2015, the Royal College of Nursing reported that "the exact prevalence of endometriosis is unknown but estimates range from between two and 10 per cent of the general female population but up to 50 percent in infertile women." The NHS does collect data on hospital admissions where endometriosis was the primary condition - in 2018-19 there were 23,000 hospital admissions where the main cause was endometriosis in England.

There is currently no cure for endometriosis, but there are treatments that can help with symptoms. These include painkillers, hormone treatment, such as hormonal contraception, and surgery. NICE published clinical guidance on the diagnosis and management of endometriosis in 2017.

For more general information on endometriosis, see the following sources:

Endometriosis and employment law

There are a number of different employment rights which may be important for women who suffer from endometriosis. Endometriosis UK, a leading charity, have produced a helpful guide for employers which provides an overview of the relevant employment laws and the issues that can arise in the context of endometriosis. It raises three areas of employment law in particular:

The duty to make reasonable adjustments

Statutory sick pay

Flexible working

Discrimination and Reasonable Adjustment
The Equality Act 2010 (EqA) contains the law on discrimination and reasonable adjustment.

The EqA prohibits three types of discrimination on the basis of disability:

Direct discrimination;

Discrimination arising from a disability; and

Indirect discrimination.

In addition, the Act requires employers to make reasonable adjustments for workers who have a disability.

The Commons Library Paper, People with disabilities in employment, provides an overview of these provisions. The Equality and Human Rights Commission's Employment Statutory Code of Practice also provides a detailed overview, including lists of examples.

The EqA defines a disability as a physical or mental impairment which has a substantial and long-term adverse effect on a person's ability to carry out normal day-to-day activities (see section 6).

The Endometriosis UK guide states:

If that condition prevents her from carrying out day-to-day tasks (even if this is not every day but a repeat cycle), then she may be entitled to the protection of the Equality Act.

'Substantial' is an important word. It is entirely possible that two women with endometriosis will fall on either side of that definition because of the extent of the effect the condition causes.
Statutory sick pay
The Social Security Contributions and Benefits Act 1992 sets out the rules on statutory sick pay (SSP).

An employee who has a 'period of incapacity for work' (i.e. is sick for four or more consecutive calendar days) is eligible for SSP from the fourth 'qualifying day' (i.e. days on which they would normally work). Two periods of incapacity for work which are separated by fewer than 8 weeks can be linked (i.e. SSP is paid from the first 'qualifying day' in the second period).

SSP is payable at a statutory rate (currently £94.25 per week) and is payable for a maximum of 28 weeks in any three-year period.

Section 24 of the Commons Library Paper, Key Employment Rights, covers this in detail.

The Endometriosis UK guide states:

For some women with menstrual related problems such as endometriosis, the cycle of repetition can mean the sick leave is linked. For other sufferers of repeating conditions that are more erratic or on a longer cycle of repeats, the repeating three day 'nil payment' periods can be a real problem.
Flexible working
The Employment Rights Act 1996 sets out the rules on the right to request flexible working.

An employee with 26 weeks' continuous service with their employer can request flexible working (i.e. changes to their working hours, times or location of work). Employers can refuse the request but can only do so on the basis of one of the grounds listed in the legislation.

The Commons Library Paper, Flexible working, covers this in detail.

The Endometriosis UK guide notes:

Although the statutory wording is "flexible working", she cannot apply under the statute to work 'flexibly' as most us would understand the word - i.e. variable hours that she chooses. She can apply under the statute to change work location or change work hours to some other specific place or work pattern. These are normally permanent rather than temporary changes.
Proposed reforms
On 18 July 2019, the Government published its consultation, Health is everyone's business: Proposals to reduce ill-health related job loss. Among other things, the consultation proposes reforms for SSP and reasonable adjustments.

The consultation made a number of proposals aimed at making SSP more flexible. These include:

Allowing SSP to continue during phased returns to work (i.e. wages and SSP paid pro rata);

Extending SSP to employees who earn under the Lower Earnings Limit;

Removing the concept of qualifying days.

It also proposes charging a new single labour market enforcement body with the enforcement of SSP and increased fines for employers that fail to pay SSP.

The consultation also proposed creating a new right to request workplace modifications. It would apply to a broader range of workers than those who have a disability within the meaning of the EqA and would exist alongside the duty to make reasonable adjustments. It would be a right to request workplace modifications. Like flexible working, employers would be able to refuse a request for modifications on certain grounds. The consultation suggests various options for eligibility, ranging from workers who are returning from long-term sickness absence to any worker who can make a case for modification on health-related grounds.

The consultation closed on 7 October and the Government is currently considering responses.

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Endometriosis workplace support - House of Commons Library

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Endometriosis is a condition where tissue similar to that in the lining of the womb grows elsewhere in the body, such as on the ovaries and in the fallopian tubes. It is unclear why this happens, but it is thought that cells in the lining of the womb may be carried to the pelvis during a woman's period.

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Endometriosis is a condition where tissue similar to the lining of the womb starts to grow in other places, such as the ovaries and fallopian tubes.
Endometriosis can affect women of any age.

It's a long-term condition that can have a significant impact on your life, but there are treatments that can help.

Symptoms of endometriosis

The symptoms of endometriosis can vary. Some women are badly affected, while others might not have any noticeable symptoms.

The main symptoms of endometriosis are:

pain in your lower tummy or back (pelvic pain) - usually worse during your period

period pain that stops you doing your normal activities

pain during or after sex

pain when peeing or pooing during your period

feeling sick, constipation, diarrhoea, or blood in your pee during your period

difficulty getting pregnant

You may also have heavy periods. You might use lots of pads or tampons, or you may bleed through your clothes.

For some women, endometriosis can have a big impact on their life and may sometimes lead to feelings of depression.

When to see a GP

See a GP if you have symptoms of endometriosis, especially if they're having a big impact on your life.

It may help to write down your symptoms before seeing a doctor.

Endometriosis UK has a pain and symptoms diary (PDF, 238kb) you can use.

It can be difficult to diagnose endometriosis because the symptoms can vary considerably, and many other conditions can cause similar symptoms.

A GP will ask about your symptoms, and may ask to examine your tummy and vagina.

They may recommend treatments if they think you have endometriosis.

If these do not help, they might refer you to a specialist called a gynaecologist for some further tests, such as an ultrasound scan or laparoscopy.

A laparoscopy is where a surgeon passes a thin tube through a small cut in your tummy so they can see any patches of endometriosis tissue.

This is the only way to be certain you have endometriosis.

Treatments for endometriosis

There's currently no cure for endometriosis, but there are treatments that can help ease the symptoms.

Treatments include:

Your doctor will discuss the options with you. Sometimes they may suggest not starting treatment immediately to see if your symptoms improve on their own.

Further problems caused by endometriosis

One of the main complications of endometriosis is difficulty getting pregnant or not being able to get pregnant at all (infertility).

Surgery to remove endometriosis tissue can help improve your chances of getting pregnant, although there's no guarantee that you'll be able to get pregnant after treatment.

Surgery for endometriosis can also sometimes cause further problems, such as infections, bleeding or damage to affected organs.

If surgery is recommended for you, talk to your surgeon about the possible risks.
Find out more about the complications of endometriosis

Living with endometriosis

Endometriosis can be a difficult condition to deal with, both physically and emotionally.

As well as support from your doctor, you may find it helpful to contact a support group, such as Endometriosis UK, for information and advice.

In addition to detailed information about endometriosis, Endometriosis UK has a directory of local support groups, a helpline on 0808 808 2227, and an online community for women affected by the condition.

Causes of endometriosis

The cause of endometriosis is not known.

Several theories have been suggested, including:

genetics - the condition tends to run in families, and affects people of certain ethnic groups more than others

retrograde menstruation - when some of the womb lining flows up through the fallopian tubes and embeds itself on the organs of the pelvis, rather than leaving the body as a period

a problem with the immune system, the body's natural defence against illness and infection

endometrium cells spreading through the body in the bloodstream or lymphatic system, a series of tubes and glands that form part of the immune system

But none of these theories fully explain why endometriosis happens.

It's likely the condition is caused by a combination of different factors.

What we mean by severe pain

Severe pain:

always there and so bad it's hard to think or talk

you cannot sleep

it's very hard to move, get out of bed, go to the bathroom, wash or dress

Moderate pain:

always there

makes it hard to concentrate or sleep

you can manage to get up, wash or dress

Mild pain:

comes and goes

is annoying but does not stop you doing things like going to work

Community content from HealthUnlocked

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Endometriosis is a condition where tissue similar to the lining of the womb starts to grow in other places, such as the ovaries and fallopian tubes. Endometriosis can affect women of any age. It's a long-term condition that can have a significant impact on your life, but there are treatments that can help.

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Why an Endometriosis Friendly Employer scheme?

1 in 10 women from puberty to menopause have endometriosis, that's over 1.5 million in the UK, predominately of working age. With an average time to diagnosis of 7.5 years and a cost of £8.2 billion per year to the UK economy in terms of lost work, treatment and healthcare costs, the potential impact on work and employment is clear. If you have not previously heard of endometriosis, or not realised the serious and sometimes debilitating effects it can have, this is likely to be due to its association with the menstrual cycle which many consider embarrassing or taboo to talk about, and society's historic marginalisation of "women's problems".

Thankfully times are changing, and awareness of endometriosis and menstrual conditions is increasing - but there is still a long way to go. Endometriosis UK has set up the Endometriosis Friendly Employer scheme to enable employers to work towards improving support for those with this chronic, long term condition. Employers who sign up will be helping break the taboo and stigma around endometriosis and menstrual conditions, and developing work environments where all staff are comfortable talking about possible practical adjustments that could be of benefit.

Anyone, regardless of their gender, requires the same support and flexibility in the workplace. Endometriosis UK recognises that endometriosis can affect people that do not identify as female. Transgender men, or those who identify as gender fluid or non-binary, may find it distressing to talk about their endometriosis in an employment setting. It's important to have an open dialogue about this with your employee, and discuss ways in which you can support them.

What is the Endometriosis Friendly Employer scheme and what are the benefits of signing up?

By signing up to be an Endometriosis Friendly Employer an organisation is demonstrating its commitment to support employees with endometriosis - 1 in 10 women. It is a demonstrable way of showing your commitment to your employee's wellbeing. From our work with those with the disease and employers, we believe that by overcoming the challenges individuals may face in the workplace due to lack of knowledge or misunderstanding of the disease, Endometriosis Friendly Employers will see improvements in employee wellbeing, productivity and performance, employee engagement and morale.

When you sign up to be an Endometriosis Friendly Employer, you will receive:

a certificate to display your commitment

your organisations name on the list of signatories on our website

twice yearly e-newsletters highlighting organisational best practice and keeping you up to date with latest developments

support for Endometriosis Champions with an induction webinar and dedicated Endometriosis Champions e-updates

a copy of the book 'Endometriosis: The Experts' Guide to Treat, Manage and Live well with Your Symptoms' for information and reference within your organisation

permission to use the Endometriosis Friendly Employer logo

Many thanks to Standard Life Aberdeen for being the first organisation to become an Endometriosis Friendly Employer. Their willingness and commitment to tackle this issue so proactively, especially in what has traditionally been a male dominated finance sector, is impressive.

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1 in 10 women from puberty to menopause have endometriosis, that's over 1.5 million in the UK, predominately of working age. With an average time to diagnosis of 7.5 years and a cost of £8.2 billion per year to the UK economy in terms of lost work, treatment and healthcare costs, the potential impact on work and employment is clear.