Endometriosis is the second most common gynaecological condition in the UK. It affects 1.5 million women - meaning 1 in 10 have the condition.
It's important to note that other, better-known conditions have similar numbers - like diabetes. Yet, with endometriosis most people haven't even heard of it.
The symptoms of endometriosis are caused by tissue similar to the lining of the uterus (womb) starts growing where it shouldn't. Commonly, this growth occurs in the pelvic and peritoneal cavity (abdomen), but it can happen anywhere in the body - including lungs, brain, skin etc.
When women with these tissue growths get their period each growth responds to the hormone changes, causing bleeding, inflammation and scarring.
The outward symptoms most commonly associated with the disease are;
In more advanced cases, endometriosis causes adhesions inside the abdomen, formed up by sticky areas of scar tissue, that can cause organs to fuse together, much like webbing. Common places for adhesions are the ovaries, between the uterus and bowel and the inner and out bowel walls.
The cause of endometriosis is unknown and there is no definite cure. It is possible that the condition can be genetically inherited, but there needs to be far more research to determine the true cause of the disease. Strikingly, the disease costs the UK economy £8.2bn a year in treatment, loss of work and healthcare costs.
This cost is only exacerbated by the long wait to diagnosis, averaging 7.5 years - leaving women with progressive symptoms under- or incorrectly treated for the condition.
Women with endometriosis often state varied and various experiences of pain. Their descriptions often include mild to severe cramping, stabbing sensations that occur on one or both sides of the pelvis orin the lower back, rectal pain (especially when using the bathroom), and even referring pain down the legs. Pain during penetrative sex is also commonly described as ‘deep’ or ‘sharp’ pain.
You can watch a short video of women describing their experience here.
In addition to the physical symptoms, the ramifications of the illness on a woman's life are far reaching.
This is because women are often misdiagnosed, treated ineffectively or incorrectly told that their symptoms are normal or trivial.
The experience of the disease in each individual is hugely varied. These symptoms can range from mild or unnoticed to utterly debilitating and its important to note that with this condition there is no real correlation between the amount of endometriosis and the amount of pain. Some women with only small adhesions can be utterly debilitated, while others may have extensive disease with no noticeable symptoms - often only discovering they have the illness if and when they try to conceive.
It can be difficult to diagnose endometriosis because each woman's experience can vary considerably, and many other conditions can cause similar symptoms. Diagnosis usually requires some or all of these options: symptom analysis, medical imaging, tissue biopsy.
Unfortunately, scans, blood tests and internal examinations are not conclusive ways to diagnose the disease and these make up the standard tools available at the GPs office.
To help the process of uncovering the illness, its important women are aware of many of the less common symptoms that are also attributed to the disease, to help them identify the true cause of their pain and discuss it with their health care providers. Some examples include;
Many women remain undiagnosed with endometriosis until they choose to start a family and find themselves struggling to conceive. In fact, up to 50% of women effected by infertility as a direct result of their endometriosis. This infertility's often caused by advanced adhesions blocking the key function of the ovaries, Fallopian tubes or walls of the womb.
It's also important to note that many women with endometriosis do conceive or benefit from reproductive treatments. Having had a baby does not rule out the presence of endometriosi, nor does pregnancy cure the disease.
It's unacceptable that is takes an average of 7.5 years from the onset of symptoms to achieve a diagnosis of endometriosis. This long and difficult wait needs to challenged and disrupted, especially with a condition that is so prolific. The status quo is unacceptable - but fortunately technology and data science can help.
We are building a new tool to help identify endometriosis in its early stages, but we need your help.
If you, or someone you know can donate their diagnosis story, we want to hear from you. In return, our brilliant gynaecologist partner, Dr Karen Morton, is offering a fully-refunded consultation through her medical helpline 'Dr Morton's'. Dr Morton is experienced in all areas oy gynaecological health and provides a caring and understanding service for women in the UK. Thank you, Dr Morton.
You can find out more about the offer, including terms and conditions here.
The symptoms of endometriosis are real, and we need to change the way the next generation experiences this condition.
This article contains all the information you need to know about laparoscopic surgery and what to expect before, during and after the procedure.
Both commonly misdiagnosed, this article explains difference between PCOS and endometriosis to inform you and help get the right diagnosis.