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Understanding endometriosis

Endometriosis (pronounced en-doh-mee-tree-oh-sis) is a common, chronic health condition affecting 1 in 10 women and girls, and individuals assigned female at birth, typically during their reproductive years (from puberty to menopause). In an average classroom, this means 1 to 2 girls may experience endometriosis

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  • Endometriosis is complex and often misunderstood, affecting around 1.5 million women in the UK and 190 million globally. Despite its significant impact, the condition remains under-recognised, under-diagnosed, and under-funded.​

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  • Currently in the UK, it takes on average between 8-10 years to receive a diagnosis of endometriosis. 

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Our mission is to change this and make a real difference for people with endometriosis.

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What is endometriosis?

Endometriosis happens when tissue similar to the uterine lining (endometrium) grows outside the uterus, most commonly affecting the pelvic area, including the ovaries, fallopian tubes, pelvic lining, urinary bladder or bowel. It can appear as superficial patches or as deeper, more invasive tissue (known as deep infiltrative endometriosis).

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Some people can have endometriosis and lead a healthy, active life, whereas for others, it can cause severe pain, especially during menstruation, and it may lead to infertility. Other symptoms include bowel and bladder pain, fatigue (extreme tiredness), and pain during sexual intercourse. 

 

Although it is less common, the condition can be found in distant areas such as the diaphragm (breathing muscle), chest (thorax), or in the wall of the tummy after surgery (caesarean scar). And while rare, endometriosis has been found affecting almost every organ throughout the entire body, including the heart and brain.​

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Adenomyosis is a different condition where the lining of the womb (uterus) starts growing into the muscle in the wall of the womb.

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.​

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There are other theories about causes being related to other immune changes and the gut microbiome (the makeup of ‘good’ bacteria), certain bacteria/viruses, toxins or trauma. â€‹However 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 difficult to contemplate a cure.

Getting diagnosed

Endometriosis diagnosis often begins with a detailed assessment of your symptoms, medical history, and family background. While symptoms can strongly suggest endometriosis, a confirmed diagnosis typically requires further investigations.

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Your doctor may recommend a pelvic ultrasound scan as the first imaging step. This scan can identify physical signs of endometriosis, such as ovarian cysts (endometriomas), and helps rule out other potential causes of your symptoms. However, endometriosis isn’t always visible on scans, so clear imaging results don’t necessarily rule it out.

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If symptoms are severe or other treatments aren’t effective, your doctor might suggest a laparoscopy—a minimally invasive surgery where a specialist gynaecologist examines the pelvis for endometriosis. During this procedure, they may treat any endometriosis found or schedule a second surgery to address it.

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It’s important to work with a gynaecologist experienced in endometriosis, as not all specialists are trained in the diagnosis and treatment of this complex condition.

 

Even without a confirmed diagnosis, some patients find relief through medical treatments and holistic therapies, which can be tried while investigations continue. Remember that pursuing an accurate diagnosis and the right treatment plan can help manage symptoms and improve quality of life.

What can I do to help?

Keeping a symptom diary can not only help you think about your symptoms, possible triggers and how often they occur, but it can also help towards getting the care and support you need, as well as a diagnosis.

 

It can also be helpful when having conversations with health care professionals about your treatment choices and what treatments help you, as well as supporting you through your treatment plans.

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Ambassador and Gynaecologist, Dr Anita Mitra (@gynaegeek) explains how best to keep a record of your symptoms.

What are the symptoms?

The symptoms can sometimes get better by themselves, but they can also progress over time. They can range from mild to severe and they tend to be worse during menstruation, ovulation, and sexual intercourse. 

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The following symptoms are often associated with endometriosis (the list is not exhaustive) and includes:

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  • Pelvic pain

  • Period pain that stops your normal activities 

  • Fatigue (extreme tiredness)

  • Pain during or after sexual intercourse 

  • Pain when passing urine or stalls 

  • Difficulties conceiving 

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The symptoms can vary depending on where the endometriosis is located in the body. Read more about symptoms.

Treatments

The symptoms can be helped with a combination of pain relief and anti-inflammatory medications, pelvic floor physiotherapy, dietary and lifestyle changes and alternate therapies.

 

Hormone treatments may also benefit. For more severe symptoms, surgery to remove the endometriosis may be necessary, if other treatments are not effective.

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Read more about treatments here.

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There is no cure for endometriosis, however, with the right treatment, many of these challenges can be managed, helping to improve symptoms and enhance quality of life for those living with endometriosis.

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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. 

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