Hello! My name is Jess and almost two years ago, I embarked on a PhD project centred on finding new ways to treat endometriosis. When I first received the news people were delighted for me, but almost certainly followed up with: “What is endometriosis anyway?” I distinctly remember being told that my topic “sounds really niche”. But the thing is, endometriosis isn’t ‘niche’ at all. In fact, endometriosis affects roughly 10% of people that have a uterus (primarily cisgender women, but also transmen and some non-binary individuals).
“What is endometriosis anyway?”
Endometriosis is a gynaecological disease where cells from the uterus grow in other locations. These cells then form lesions or cysts that are responsive to the hormone oestrogen and can cause local inflammation. Lesions can grow in places such as the ovaries, but can also be found further afield, like within the lungs. Lesions can also start to adhere to each other or surrounding tissue. Whilst endometriosis is common, its effects vary, with some individuals exhibiting little to no symptoms, whilst others feel intense pain. The most common symptoms of endometriosis include: painful periods; painful sex and chronic pelvic pain. However, endometriosis isn’t just restricted to pain symptoms; it can result in chronic fatigue and depression. One of the largest impacts of endometriosis is its negative effect on fertility, making it extremely difficult for some sufferers to conceive naturally (1, 2).
IMAGE: endometriosis UK
There are medicinal options for endometriosis, with first-line treatments consisting of anti-inflammatories or hormone-based medicine, such as the contraceptive pill, coil, injection or implant. However, these treatments only alleviate the symptoms of the disease, they do not cure it. This means that upon finishing treatment, symptoms can readily return. As well as this, introducing hormone changes into the body can cause a variety of side effects, such as: weight gain, acne, depression, reduced bone density and irregular bleeding (3, 4).
The only option to successfully treat endometriosis is surgery. Surgery can be completed on a small scale, which involves removal of the lesions or cysts. However, surgery can also be radical, which involves complete removal of organs, such as a hysterectomy (removal of the uterus). Whilst this does provide relief, it is common for endometriosis to return, even after a hysterectomy. Whilst the reason for disease recurrence is still uncertain, it is theorised to be due to incomplete cyst removal (5).
What I started to realise upon researching endometriosis is that this disease has actually been referenced within scientific papers for almost 100 years. One of most widely accepted theories of endometriosis is Sampson’s theory of retrograde menstruation, which was published in 1927 (6). It became clear to me that endometriosis has been a topic of conversation for decades.
So, once I completed my initial research I was left with one huge question: Why don’t people know about endometriosis? The answer, it seems, could be due to gender.
The Gender Pain Gap
As a society, we have become aware of the term ‘gender pay gap’. This is, of course, when women receive less money compared to their male counterparts in the same role. The phrase ‘the gender pain gap’ has also started to pick up momentum, which is the concept that pain experienced by women may not be taken as seriously as pain experienced by men. The gender pain gap can be the result of many different factors, including a societal one.
One of the main factors could be that, frankly, women are expected to experience pain. Many people are brought up to believe that their periods are supposed to be painful, that debilitating cramps are normal and hot water bottles are just a part of the deal. This normalisation of pain can often make them feel ‘weak’ when their periods seriously impact their day-to-day functioning. This greatly influences the likelihood of seeking medical advice. These assumptions on pain can also leak into the medical system itself and impact quality of care. This results in a lot of people feeling dismissed upon visiting their GP (7).
Another factor that contributes to the gender pain gap is the lack of scientific funding for conditions such as endometriosis. Considering the high prevalence of endometriosis as well as its health and economic impact, total funding is extremely poor. A ranking report by the National Institutes of Health (NIH) found endometriosis funding in 2018 to be roughly $7 million. This means that endometriosis is ranked one of the poorest of the 285 cited research areas (8). In comparison, smallpox, a disease that was declared eradicated by the World Health Organisation in 1980, received $13 million that same year (9).
A lack of funding results in a lack of knowledge trickling down into our health-care systems and the general public at large. A survey study in France evaluated 100 GPs and their knowledge of endometriosis. It found that roughly one half of the GPs questioned could not recall three characteristic symptoms of endometriosis, highlighting the lack of in-depth disease knowledge and the requirement for additional gynaecological courses (10).
Lack of in-depth knowledge within the healthcare system can contribute to misdiagnosis of endometriosis, by both GPs and gynaecologists. In fact, one report found that over 75% of women were misdiagnosed with another physical health problem or a mental health problem. Misdiagnosis, particularly of mental health problems, has a lasting impact on endometriosis sufferers and their well-being (11).
All of these factors can result in a delay to accurate diagnosis. As well as this, formal diagnosis can only be given after laparoscopy, a type of key-hole surgery, which also adds to referral hesitation. Therefore, a lot of sufferers do not get the full story of understanding their pain and its cause. Ultimately, it is no wonder that a conversation on endometriosis has yet to properly enter the mainstream, as many who suffer from this disease often do not know they have it.
How do we fix this?
When it comes to endometriosis, we have found ourselves in a vicious cycle. Lack of funding prevents impactful research, which limits the discovery of new information, which keeps diagnosis delay high, which affects future research. In this current scenario, a ground-breaking treatment seems a way off. This cycle will need to be broken in order for quality of care to improve. Ultimately, this will have to start from the top. It is critical that funding for endometriosis increases to allow for comprehensive, high quality research to be conducted.
It is also clear that training on endometriosis and its symptoms need to be introduced within our healthcare system. Endometriosis is not just a problem for gynaecologists, this disease can affect multiple different organs within the body. It’s therefore imperative for training to reach other health care professionals, such as gastroenterologists, endocrinologists, urologists, neurologists and psychiatrists.
This education should not stop at our healthcare system, it should be far further reaching. It is imperative that endometriosis enters the dialogue when it comes to sexual health early on in life. Conditions such as endometriosis should be taught within schools alongside other aspects of sex education. This will not only help eliminate the stigma felt by young people to talk about their period pains, but also allows them to gain a better understanding of their own anatomy. That way, they can identify when something is not right and take action.
It is encouraging that there is increased referencing to endometriosis within the media. Recently, BBC news worked alongside Endometriosis UK to produce an article in which they surveyed 13,500 women who have endometriosis. This article gave a platform for women to share their stories to a wide audience who may have otherwise not been aware of the condition(12). It is this type of exposure that could seriously make a difference for the thousands of women that are suffering in silence.
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9. National Institutes of Health. Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC): NIH; 2020 [cited 2020 14/07/2020]. Available from: https://report.nih.gov/categorical_spending.aspx.
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12. Bevan G. Endometriosis: Thousands share devastating impact of endometriosis London: BBC News; 2019 [cited 2020 07/07/2020]. Available from: https://www.bbc.co.uk/news/health-49897873.