March is Endometriosis Awareness Month
Many of us will not even realise that March is Endometriosis Awareness Month. This condition is pervasive as it affects 10% of women (or 1.5 million people in the UK) and yet bizarrely takes an average of seven to eleven years to diagnose. In the meantime people are offered little or no support for either the physiological or physical trauma that it generates.
This will be my last piece before taking two weeks off for Easter (which like most things in recent memory is a bit of a non-event) although there is an easing of restrictions regarding meeting outdoors. The month of March has almost been and gone. Many of us will not even realise that March is Endometriosis Awareness Month.
I would like to raise awareness of this topic this week because, like many things during the pandemic, our focus is all too often elsewhere. This condition is pervasive as it affects 10% of women (or 1.5 million people in the UK) and yet bizarrely takes an average of seven to eleven years to diagnose. In the meantime people are offered little or no support for either the physiological or physical trauma that it generates.
March is also a month of some other surprising anniversaries that remind us of just how quickly time passes. March 21st, 2006 was when Jack Dorsey (the Twitter founder) published his first ever tweet and unbelievably he has just sold it for £2.1 million. He has since promoted himself as a philanthropist as the entire proceeds of the sale have been given to GiveDirectly’s ‘Africa Response’ charity fund to help mitigate the effects of COVID-19 in Africa.
Just in case you wondered how they go about selling a tweet, the tweet can of course still be accessed by anyone on Twitter, but the version that it sold is known as a ‘non-fungible token’ or NFT. An actual NFT comprises a unique digital code that demonstrates who owns a piece of digital media and so essentially it becomes like a piece of art.
Clearly we are also about to move into the month of April and inevitably the first hurdle is ‘April Fools’ day. There have been memorable ‘April Fools’ over the years. Among these were Tesco supermarket who introduced the genetically modified ‘whistling carrot’ in the Sun newspaper. The narrative in the advert explained how the carrots had holes in and when they reached their perfect cooking temperature, they would produce a 97-decibel whistle.
In 1998 Burger King launched the left-handed cheeseburger leading to people even specifically requesting right-handed cheeseburgers.
Even Google got in on the act in 2013 by releasing ‘Google Nose’ as a new way to search the internet. Search enquiries such as ‘wet dog’ or ‘grandma’s closet’, it was claimed, would provide you with the scent of your search if you sniffed your PC or tablet or phone. I really do wonder how many people fell for that.
What is Endometriosis?
However, for this week’s piece we go back to February 19th, 1804 when Karl von Rokitansky was born. During the nineteenth century he performed roughly 30,000 autopsies during his studies of disease and pathology in Vienna (this was risky work at the time as there were very mixed attitudes towards performing autopsies). In 1860 he became the first man to describe the growth of abnormal uterine tissue and identify endometriosis.
Endometriosis is the growth of endometrial tissue outside the uterus. It most often occurs in the ovaries (forming cysts called endometriomas), fallopian tubes, or tissue lining of the pelvis (in rare cases it can migrate beyond the pelvic organs). Often in the case of extensive endometriosis, because of the overall proliferation of endometrial tissue, menstruation can result in excruciating pain and fertility issues. However, one thing is certain and that is that endometriosis varies significantly from person to person.
Endometriosis is often classified into two main types. The first is peritoneal or superficial (superficial meaning ‘on the surface’) endometriosis – this is found on the surface of the peritoneal lining of the pelvic cavity or organs. The peritoneum by the way is a continuous membrane which lines the pelvis and abdominal organs (or abdominal viscera).
It acts to support the viscera and provides pathways for blood vessels and lymph to travel to and from the viscera. The second type is deep endometriosis – found below the surface. This is a deep infiltrating form of endometriosis (sometimes referred to as recto-vaginal endometriosis). In general, the majority of endometriosis is found within the pelvic cavity, however up to 10% of those people with the disease may also have it elsewhere in the body, for example on the diaphragm or in the chest cavity (thorax).
Endometriosis is a condition where the endometrial-like tissue that migrates outside the uterus acts as normal endometrial tissue would — it thickens, breaks down and bleeds with each menstrual cycle. But because this tissue has no way to exit your body, it becomes trapped and acts like a space occupying lesion. This also causes surrounding tissue to become irritated, eventually promoting scar tissue and adhesions.
These abnormal bands of fibrous tissue can cause pelvic tissues and pelvic organs to adhere to one another. Pain can reflect around the pelvic anatomy and can also even sometimes manifest as lower back pain. Often female patients will describe how their lower back pain is exacerbated by their menstruation cycle. As an osteopath this is something I have witnessed many times.
Endometriosis is not Well Understood but there are a Few Studies that have yielded Insights
Surprisingly even in 2021, despite the prevalence of the condition, it is not well understood although there are some studies that offer a degree of insight. One such study is a recent investigation published in 2016 in the journal ‘Fertility Sterility’. This is an international journal for obstetricians, gynaecologists, reproductive endocrinologists and urologists.
The lead researchers (Santulli and Bourdon from Descartes University, Paris) set out to investigate the relationship between pain and the extent of spread of endometrial tissue. To do this they interviewed 422 females who been unable to conceive and had been treated for endometriosis between 2004 and 2017. Of these 422 people, 289 ranked their pain as a seven out of ten or higher.
The study also had access to their original surgical reports, and they discovered that those with more pain had more extensive disease. Indeed, these patients typically had more extensive and deeper areas of endometriosis which were more likely to be found on the intestines in the abdominal viscera. Sadly these people often reported more fertility complications and ultimately ended up having yet more surgery and fertility treatments.
Any participants who rated their pain as six out of ten or lower were much less likely to have deeper lesions with a lesser chance of proximity to the intestines and fertility issues.
Amazingly, as we mentioned earlier, it typically takes between seven and eleven years for women to receive a diagnosis of endometriosis. This is quite shocking. Currently ‘Endometriosis UK’ is lobbying the government to make a firm commitment to reduce this diagnosis time down to an average of four years or less by 2025 and to 12 months by 2030.
All-Party Parliamentary Group (APPG) Endometriosis Report 2020
According to the All-Party Parliamentary Group (APPG) Endometriosis Report published last year, which surveyed 10,000 sufferers, it was revealed that there had been no improvement in diagnosis times in a decade – taking eight years on average. Emma Cox, CEO of Endometriosis UK comments; ‘The impact of delayed diagnosis on people’s physical and mental health can’t be overstated. If undiagnosed, the disease may progress, and negatively impact people’s careers, education, relationships and all aspects of their life.’
According to the APPG report many women with endometriosis are left feeling that they are being failed by the system (90% said they felt isolated and unsupported) , and worse, even when they received a diagnosis, felt unable to access the care they need. Of these 54% were not very or not at all confident they could make an appointment with a gynaecologist about their endometriosis symptoms if they felt they needed to (even before COVID-19).
Of the 10,000 sufferers who contributed to the report, remarkably 58% had visited their GP over 10 times, 21% had been in hospital 10 times or over, 53% had been to A&E and half of those had been more than 3 times.
Diagnosis is often slow for several reasons. According to ‘Endometriosis UK’ 62% of women aged 16-54 delay consulting with a GP because they feel that their symptoms are trivial, or because they are embarrassed, or because they will not be taken seriously, or because pain during the menstruation cycle is normal. This figure rises to 80% for those aged 16 to 24. In the 16–54-year-old age group 42% would be concerned about telling their employer they needed to take time off sick due to endometriosis, rising to 57% for 16 to 34-year-olds.
So clearly there is a long way to go in terms of dealing with this painful and debilitating gynaecological condition. Encouragingly Nadine Dories, Minister for Women’s Health commented last year; ‘I am committed to filling the evidence gaps to better understand the issues facing women and improve women’s health. We have provided £2m, through the National Institute for Health Research, to investigate the effectiveness of surgery compared with non-surgical interventions to manage chronic pain in a specific type of endometriosis.’
My next piece, after Easter, will look at the latest research and progress that has been made in treating endometriosis.