Understanding endometriosis

Expert Insight, Patient Voice

Medically reviewed by Andrew Horne, Professor of Gynaecology and Reproductive Sciences at Edinburgh University’s MRC Centre for Reproductive Health.

What is endometriosis?

“My symptoms started when I was 11 years old,” says Suzanne from Endo Warriors West Lothian (EWWL), who spent 22 years waiting for an endometriosis diagnosis.

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"Every month it feels like my insides are being torn apart, like someone is stabbing and tearing at them, like everything is going to fall out. And it isn’t just the pain, I have to wear two night-time size towels overlapped during the day and change them every hour and a half because the bleeding is so heavy. I feel so vulnerable."

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Unfortunately, Suzanne isn’t alone. According to the World Health Organisation there are around 190 million people worldwide currently living with endometriosis. That’s one out of every ten women, and those assigned female at birth (AFAB), of reproductive age.

Endometriosis is a chronic condition that can bring debilitating pain and heavy periods that stop sufferers going about their daily lives. It’s an experience they know they will face every single month, due to the nature of the condition, which is characterized by tissue similar to that usually found in the uterus, growing in other parts of the body.

Most commonly this tissue is found on the lining of the pelvis or in the ovaries, but it can also be found elsewhere, including in the lungs and diaphragm. Each month, it is thought that the tissue builds up and breaks down as bleeding, exactly as it does during the menstrual cycle, but unlike in the uterus where it can exit the body, it has nowhere to escape. This leads to inflammation, chronic pain and scar tissue.

Endometriosis symptoms

Those affected by endometriosis often suffer from their very first period. Data from the Endometriosis Association of Ireland revealed that around 60% of adults with endometriosis had symptoms before they were 20. These can include crippling pain, bladder and bowel problems, irregular periods, bloating, nausea, fertility complications, bleeding between periods and heavy bleeding that can leave people house-bound, too afraid to go out in case they bleed through their pads or tampons.

And these are just the most common symptoms. Women also report nose bleeds, thrush, weight gain – both from hormones and from not being able to move around as much as they would like – UTIs and joint pain, among others. All of this before you consider the impact on mental health, quality of life, work, education and social interactions that living with a chronic condition like this can have.

Those living with endometriosis are also more likely to suffer from other conditions, and whilst more research is needed to fully understand the links, various studies have shown associations between endometriosis and cancer, autoimmune diseases, asthma or allergic reactions and cardiovascular diseases [1].

The battle for diagnosis

The issue for the millions of people who live with endometriosis is that getting a diagnosis is at best a frustrating and lengthy struggle and at worst a demoralising battle, where they are continually dismissed by their doctors.

Kirstin, also from EWWL, suffered with symptoms from age 11, fighting till she was 26 for a diagnosis:

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"It’s been an uphill battle for years. I’ve been told many times it’s just a ‘bad period’ and that I should be able to manage it without seeing the doctor regularly. I was accused by my doctor of faking appendicitis when I was 12 and sent home with Calpol, my mum was still concerned later that day and took me back. I got a reluctant referral to the children’s ward, where it was later discovered that I had a ruptured cyst in my ovary that required immediate surgery!"

”

Shockingly, for a condition that is so debilitating, data from Endometriosis UK reveals that an endometriosis diagnosis takes an unacceptable average of 8 years, with large numbers of sufferers waiting up to 10; a timeframe in which the condition often worsens[2]. The reasons for these delays are many. At the highest level, it has remained largely ignored in government policy and by research funders globally, unlike other long-term conditions such as diabetes and asthma.

Gender Bias

Data from the US paints a picture of the disparities in investment that play out globally. In 2021 diabetes received $1.1bn in funding from the National Institute of Health (the largest source of biomedical research funding globally), compared to endometriosis that received just $20m. Yet, if you just consider women, both conditions affect around the same amount 199 million and 190 million respectively [3]. According to data from the World Health Organisation (WHO), the total number of people who suffer from diabetes globally is 422 million, male and female. Considering this in the context of the investment from the National Institute of Health, the disparity becomes even clearer, with diabetes receiving a massive 6.8 times the investment per person, than endometriosis.

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"Endometriosis has received little research funding because it only affects women and there remains a gender bias in research. It has also suffered because it is an ‘invisible’ pain condition."

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Professor Andrew Horne, Professor of Gynaecology and Reproductive Sciences at Edinburgh University’s MRC Centre for Reproductive Health

Joii’s founder and CEO, Justyna Strzeszynska, saw this reluctance to invest in women’s health issues first-hand when speaking with investors. She adds,

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"Raising funding for a women’s health start-up has always been incredibly difficult. When I first started talking to investors about Joii, we were told that financial support for MedTech innovation is given in ‘areas that matter’, such as ‘heart health, liver health and diabetes!’ I was speechless, not least because those words came from two women representing one of the top state agencies in Ireland. There was a real lack of understanding of the impact that menstrual health conditions, such as endometriosis, can have on those that suffer from it. This was an organisation that markets itself as a progressive company keen to support female entrepreneurship, so we were very disappointed to hear menstrual health being so easily dismissed and regarded as ‘unimportant’."

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The lack of research and funding for gynaecological conditions has led to insufficient understanding within the medical community and a dearth of specialists with expertise in specific diseases that impact women and those assigned female at birth (AFAB). Life-limiting, debilitating diseases such as endometriosis are therefore not prioritised and even once someone is referred for further investigation, they will likely sit for months, if not years, on ever-growing surgical wait lists before getting a diagnosis or treatment.

A lot of this can be attributed to gender bias, which is an issue seen throughout healthcare. A study from Manuel, a wellbeing platform for men, revealed that the UK has the largest female health gap among the G20 countries and the 12th largest globally. Endometriosis also has some of the most archaic myths attached to it.

As recently as the 1990s it was still dubbed a “career woman’s” disease as clinicians reported that women who had children later in life were more prone to having it [4]. This issue persists today, with a recent study out of Australia revealing that some doctors are still advising women to get pregnant to reduce symptoms [5].

Feeling dismissed

This lack of understanding and the pervasive myths that surround endometriosis can lead to people having their menstrual pain, no matter how excruciating, dismissed or normalised by doctors. Sufferers and those around them also find themselves normalising the pain, thanks to years of women being told that it’s just part and parcel of menstruation. Because knowledge of women’s health is lacking, endometriosis symptoms are often played down or attributed to other conditions and, if those symptoms aren’t purely menstrual, then endometriosis can also be overlooked as a possible diagnosis.

“I was always told it was just a bad period” says Suzanne.

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"I was given the pill to control regularity, mefenamic acid to control the bleeding and painkillers to help numb the pain. I don’t blame the doctors, they just didn’t have enough information on endometriosis. I was tested for everything, had blood tests, urine, swabs, smears, internal exams, ultrasounds and even a laparoscopy – keyhole surgery to examine inside my abdomen – but was told everything was fine. It wasn’t until I saw a second GP in my early 30s that I was told about endometriosis, the gynaecologist I was referred to this time, looked at the notes from my previous laparoscopy and told me the procedure actually showed signs of endometriosis and that my ovary was stuck to my kidney. I felt so let down."

”

Despite the fact the NHS lists endometriosis as one of the most painful conditions that can affect your health, women often only feel listened to about their menstrual health when they start to talk to their doctor about having babies. And further data from the NHS Business Services Authority, which deals with prescription services in England, reveals women are 1.7 times more likely to be prescribed pain relief than have their pain investigated compared to men.

Professor Horne states that, as well as in research, there is plenty of evidence to support the existence of gender bias when it comes to clinical pain assessment:

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"It’s complex but in part is related to social and cultural bias in the perception of health and pain in women. There is a long history of attributing female health problems to ‘mental health’ problems e.g. hysterectomy as a cure for ‘female hysteria’."

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Kirstin describes an experience she had in 2021:

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"I was admitted to hospital in March 2021, where I was told I couldn’t possibly have endometriosis as a laparoscopy I had done in 2012 – nine years previous – hadn’t revealed any endometriosis tissue! Would they have told me I didn’t have cancer if I had been shown to be cancer free nine years ago? It was four months after this experience and 15 years after I first had symptoms that I finally got my endometriosis diagnosis."

”

Research from Endometriosis UK in conjunction with the All-Party Parliamentary Group (APPG) on endometriosis in the UK revealed that 58% of endometriosis sufferers visited their GP over 10 times with symptoms and 53% ended up in A&E, leaving many sufferers feeling like the system has failed them [2].

Waitlists are only getting longer

Since the pandemic, wait lists for gyneacological appointments have soared, with The Royal College of Obstetricians and Gynaecologists (RCOG) revealing in summer 2022 that there had been a massive 60% rise on pre-pandemic levels. This is a bigger increase than any other area of medicine.

According to the RCOG, gender bias has played a significant part in these excessive wait times. They state that because women’s health problems are viewed as ‘benign’ (non-cancerous) the gynaecological surgery list isn’t prioritised and therefore, there is a perception it can be easily cancelled, which is what happened during the pandemic and has led to hundreds of thousands of women waiting in pain for diagnosis and treatment.

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"The long waiting times are having a devastating impact. The RCOG recently surveyed 837 women waiting for gynaecology care. 80% of women said that their mental health has worsened due to the wait. Pain was given as the reason in 25% of those whose mental health had deteriorated. Until wait times for surgical or fertility-related procedures are fixed, contact with gynaecologists via telemedicine and the provision of remote mental health support need to be prioritised for people living with endometriosis."

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Professor Andrew Horne

Racial disparities in endometriosis care

Whilst gender bias has played a significant role in poor outcomes for those living with endometriosis, racial disparities within healthcare have added further frustration and suffering, particularly for Black women.

A lot of these issues stem from outdated and incorrect beliefs surrounding the disease; that endometriosis only effects white, upper-middle class women, that black women are less likely to suffer from endometriosis or that Black people feel less pain [6]. All of this has led to serious issues with both diagnosis and care. Black women are also more likely to be misdiagnosed [7], in particular with fibroids when they present with heavy bleeding and pain, due to the fact they are at a higher risk for this than other groups.

A 2022 study from the Cleveland Clinic in the United States, found that race and ethnicity were also associated with increased likelihood of complications during surgery and more invasive surgeries being used for non-white women [8].

Endometriosis impact

The impact of endometriosis on the lives of sufferers cannot be overstated, the APPG Report revealed that 95% of people living with the condition confirm it has a negative impact on their wellbeing and 89% add that it has affected their ability to live their life as they want [2]. It also highlighted the impact living with endometriosis has on school and work. A massive 43% of school-age endometriosis sufferers have missed school due to their symptoms, whilst 55% of people who suffer from it and are employed have had to take time off work. More than a third (38%) stated they have concerns about losing their job.

This data has resulted in campaigners across the UK and Ireland calling for it to be classified as a disability, with MPs from the APPG highlighting this recommendation in a debate focused on endometriosis in the workplace; a call backed by the Endometriosis Association of Ireland. The UK debate also looked at the importance of working with employers to make workplaces more friendly for those who suffer from endometriosis, including better access to the toilet, sick leave, time off for medical appointments as well as ad hoc flexible working.

Diagnosing endometriosis

At present, the gold standard for diagnosis is a ‘laparoscopy’, where a surgeon passes a thin camera tube, under a general anaesthetic, through a small cut in a patient’s tummy, so they can see any patches of endometriosis. Whilst doctors also use pelvic exams, ultrasounds and MRIs to aid diagnosis, a laparoscopy will allow a surgeon skilled in this field to gain information about the location, extent and size of the tissue. It is also the surgery conducted to remove the tissue. As a diagnosis tool, this is an incredibly invasive procedure.

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"There needs to be more investment in research into chronic gynaecological conditions such as endometriosis to help identify better ways to diagnose the condition. For example, a non-invasive diagnostic biomarker or a blood or urine test, that avoids the need for a surgical diagnosis, could have a huge impact on endometriosis care."

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Professor Andrew Horne

A postcode lottery

Once people reach the top of the waiting list for investigation and treatment, the options and standard of care vary dramatically throughout the UK and Ireland. It is a postcode lottery as to whether sufferers can access specialist units or gynaecologists with the relevant specialism to correctly diagnose and treat endometriosis.

In Ireland, there is currently only one specialist endometriosis clinic, at the Coombe Women and Infants University Hospital, and waitlists are up to three years for some surgeries. Many people find themselves having to leave Ireland to seek diagnosis and support as the waitlists are so long.

Insights gathered by the APPG in the UK include stories from those who were seen and misdiagnosed by gynaecologists who didn’t specialise in endometriosis, with some even reporting operations being done inadequately, resulting in areas of tissue being missed, on-going pain and further surgeries [2]. The data in the report revealed that 27% of people have endured three surgeries or more, trying to alleviate their suffering.

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"Access to healthcare practitioners who specialise in endometriosis is limited, and often affected by where you live in the UK. Effective care pathways need to be devised and implemented within the NHS to ensure that patients get to the right hospitals to see specialists with expertise in recognizing and treating the disease."

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Professor Andrew Horne

With certain surgeries requiring extensive surgical expertise and endometriosis often being found in multiple organs, many sectors of the medical community, including the European Society of Human Reproduction and Embryology (ESHRE), advocate for endometriosis centres to include multi-disciplinary teams. This means bringing in a team of different specialists to help support a timely and accurate diagnosis and treatment of the condition. Those on the team might include an endometriosis surgeon,a bowel surgeon, a urologist, a thoracic surgeon, a pain medicine specialist, a pelvic floor physiotherapist, a pain psychologist and a specialist nurse.

The benefit of this approach is that it provides better collaboration and a more holistic approach and outcome for the patient. With specialists on hand, such as a bowel surgeon, there is a greater chance of a patient undergoing a successful surgery, rather than waking up to be told they need to come back when a bowel surgeon is on hand due to the location of the endometriosis. The UK currently has just over 100 of these BSGE-accredited specialist multidisciplinary endometriosis centres but referrals to them for diagnosis and treatment depends on where you live, leaving many people unaware they even exist or unable to access them because of their location.

Treatment options

There is currently no cure for endometriosis. Treatment is about managing symptoms and ranges from pain relief and hormone therapy such as the contraceptive pill, to surgery to remove the tissue and in some cases a hysterectomy with removal of the ovaries. Whilst the pill is often prescribed to alleviate a variety of menstrual health symptoms, some endometriosis sufferers have said they felt it just masked their symptoms and pushed their diagnosis further down the line.

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"The second gynaecologist I saw explained to me that having the contraceptive injection had masked some of my symptoms. By the time I had my second surgery, and they confirmed it was endometriosis, it was so advanced they couldn’t remove any of the tissue. It had fused by bowel and womb together, it was on the back of my womb, in the ligaments going out of my back, in my pouch of Douglas (a space between the womb and rectum) and on the outside of my bladder. At this point I was 33 and it was 22 years after I first had symptoms."

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Suzanne, Endo Warriors West Lothian

The surgical treatment used to remove the tissue is the same that is used for diagnosis – the laparoscopy – but new findings have revealed that this could actually be making things worse for patients, especially those who have developed separate pain conditions as a result of their endometriosis. The latest thinking, spearheaded by Professor Horne, is that pelvic endometriosis should be categorised into one of three separate subtypes and the chosen treatment should depend on which one a patient is dealing with.

The future

What is clear is that the best way to improve outcomes is for more resources and funding to be put into research. Better understanding of the condition is the only way to help drive greater knowledge and support within the medical community, create faster non-invasive diagnosis tools and improve treatment options. It is also imperative that women of colour and those from different socio-economic backgrounds are represented in medical trials to try and improve outcomes for everybody.

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"To see real progress there needs to be significant investment into endometriosis research and for that we need support from politicians and governments. If this investment is delivered, I believe that this will lead to the identification of a simple non-invasive test for endometriosis and, ultimately, a cure. I feel positive about the future. The recent launch of the Women’s Health Strategy here in the UK has been exciting to see and, if it delivers, I strongly believe that it will improve experiences of healthcare services and health outcomes for people with endometriosis. I think the silence has been broken over endometriosis and the future will lead to better care for people with the condition."

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Professor Andrew Horne

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"More than anything we need more research. There needs to be better understanding and alternatives that treat it, not mask it. I had years of medication, two laparoscopies, and eventually chemically induced menopause, which did nothing for me pain-wise, it stopped the bleeding but gave me menopause symptoms including hot flushes, cold sweats and trouble sleeping."

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Suzanne, Endo Warriors West Lothian

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"At a very basic level, better training is needed for all healthcare professionals regarding endometriosis, I also think education at school is key. Young people need to know what symptoms to look out for so they have a better idea of what is ‘normal’ and what they should be seeing their doctor about. People only seem to understand how debilitating it is if they have endometriosis themselves or someone close to them has."

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Kirstin, Endo Warriors West Lothian

Along with driving greater understanding, there needs to be better funding for training, and budgets allocated by governments to create specialist teams and centres to ensure proper management of the condition.

Check out our Joii App page if you would like to know more about how we are hoping our app will help empower endometriosis sufferers with important information about their menstrual health and drive greater understanding of the condition.

With thanks to Kirstin and Suzanne from Endo Warriors West Lothian for sharing their stories with Joii. Endo Warriors West Lothian is an independent support and awareness group based in Scotland that offers vital support to those living with endometriosis.

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