Understanding Endometriosis
Endometriosis is a common long-term health condition affecting more than 1 in 10 women and girls and those assigned female at birth.
It is a complex and often misunderstood condition that affects millions of people worldwide.
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Endometriosis can cause severe pain, infertility, and numerous other physical and emotional challenges. Yet, despite its significant impact, Endometriosis remains vastly under-recognised, under-diagnosed, and under-funded.
A diagnosis in the UK currently averages nine years, and treatment options remain limited, with no definitive cure in sight.
What is it?
Endometriosis happens when cells, similar to those that make up the lining of the uterus (endometrium) are found growing and functioning in areas of the body they shouldn’t be.
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These rogue cells are usually found affecting the lining of the pelvis, the ovaries, fallopian tubes; the urinary bladder and the bowel, but it can, in less common cases, appear in distant areas such as the diaphragm (breathing muscle), chest cavity (thorax), and in the wall of the tummy after surgery (caesarean scar).
This wide-reaching condition has been documented in nearly every organ in the body, meaning you can come across Endometriosis in any field of medicine.
You can have one or few patches of Endometriosis in one area, or you can have multiple patches of Endometriosis in various parts of the body. These patches can be either on the surface (superficial endometriosis), deep inside the tissue and surrounding organ(s) or inside the ovaries forming cysts (endometrioma). As Endometriosis develops, it can lead to the formation of fibrous scar tissue, causing organs such as the ovaries, fallopian tubes, the uterus, and bowel to stick together. This can distort the organs, jeopardising their function, leading to severe pain and sometimes serious medical problems. In its more severe form, this is known as frozen pelvis disease. A frozen pelvis happens when the pelvic organs which are normally separate from one another and can move unrestricted, become stuck, fused together and firmly fixed in place. This can affect the function of the organs and is often associated with severe pain and infertility. This happens in a small minority of cases.
Causes
The causes of Endometriosis remain unclear and there is currently no cure. Although there are several theories (some dating back centuries), none fully explain the exact cause of Endometriosis or why it happens. There has however been links to several factors which may contribute to its development, such as genetics, problems with the immune system and the gut microbiome (makeup of ‘good’ bacteria), toxins in the environment, and the after-effects of surgery, to name a few. Not all theories are able to fully explain Endometriosis, which is why more work needs to be done. Until we understand the root cause of Endometriosis then it is hard to even contemplate a cure. Endometriosis research is sadly very far behind that of other conditions, it certainly has some catching up to do. Ultimately Endometriosis is poorly understood. There is still more to be done to raise awareness, and much research needed into developing new and effective treatments, a cure, and more importantly, finding out why and how the condition occurs and what causes it.
Is Endometriosis the endometrium?
​Under the microscope, Endometriosis contains features that are similar to, but different to the those found in the endometrium, the layer of tissue that makes up the lining of the uterus (womb). There is often an abundance of nerve endings, new blood vessels being formed, and changes in cell type causing scarring surrounding an area of Endometriosis, which is why the tissue is described as ‘similar to’ or ‘endometrial-like’. Despite these differences, similarly to the endometrium, Endometriosis also responds to the monthly fluctuations in hormones during the menstrual and ovulatory cycle. This is why the pain usually becomes most severe around the time of menstruation and/or ovulation. However, it doesn’t always take for the rise and fall of hormones to bring on Endometriosis pain. Some people find their symptoms heighten around the time of their periods, whereas others may experience pain and symptoms outside of menstruation or chronic, on-going pain.
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Endometriosis Facts & Figures
Information you can trust
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More than 10% of women, girls, and those assigned female at birth are affected.
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Endometriosis is the second most common gynaecological condition in the UK.
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10% of individuals assigned female at birth AFAB have Endometriosis. That's an estimated 176 million worldwide - a similar number to those with Diabetes.
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It currently takes on average between 7-9 years from the onset of symptoms to achieving a diagnosis in the UK.
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Up to 50% of those diagnosed may experience difficulties conceiving.
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The causes are unknown and there is currently no cure.