Understanding endometriosis

Endometriosis (pronounced en-doh-mee-tree-oh-sis) is a common and often misunderstood health condition that affects approximately 1 in 10 women, girls, and individuals assigned female at birth, typically during their reproductive years - from puberty to menopause. To put this into perspective, in a typical classroom, 1 to 2 students may live with endometriosis.

This complex condition impacts an estimated 1.5 million people in the UK and 190 million worldwide. Despite its prevalence and profound effects, endometriosis remains under-recognised, under-diagnosed, and under-funded.

In the UK, it currently takes an average of 8 - 10 years for someone to receive a diagnosis, leaving many to struggle without the understanding or support they need.

Our mission is to change this. We are committed to raising awareness, improving access to timely diagnoses, and making a meaningful difference for those affected by endometriosis.

What is endometriosis?

Endometriosis occurs when tissue similar to the lining of the uterus (called the endometrium) grows in places it shouldn’t, most commonly within the pelvic area. It can affect organs such as the ovaries, fallopian tubes, pelvic lining, bladder, or bowel. This tissue may appear as shallow patches or as deeper, more invasive growths, known as deep infiltrative endometriosis.

For some, endometriosis may cause minimal disruption to daily life, while for others, it can bring intense challenges. The condition is often associated with severe menstrual pain, and in some cases, it can lead to difficulties conceiving. Other symptoms might include fatigue, pain during bowel or bladder movements, and discomfort during ovulation and sexual intercourse.

Although rare, endometriosis can also be found in less common locations, such as the diaphragm, chest, or abdominal wall following surgery (like a cesarean section). In extremely rare cases, it has been discovered affecting organs throughout the body, including the heart and brain.

Endometriosis is a complex condition, and its impact varies greatly from person to person. By understanding it better, we can help those affected feel seen, supported, and empowered.

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 exact causes of endometriosis remain unknown, and currently, there is no cure. While there are many theories—some dating back centuries—none fully explain why endometriosis develops or affects certain people.

Research has suggested that genetics may play a role, as the condition sometimes runs in families. Other theories explore links to changes in the immune system, imbalances in the gut microbiome (the community of “good” bacteria), the presence of specific bacteria or viruses, exposure to toxins, or physical trauma.

Despite these ideas, no single explanation captures the complexity of endometriosis. This uncertainty highlights the need for further research to uncover its root causes. Only by understanding the condition better can we move closer to discovering effective treatments and, one day, 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.

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.

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.

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.

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.

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

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

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

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.

Endometriosis Facts & Figures

Information you can trust

More than 10% of women, girls, and those assigned female at birth are affected.

Endometriosis is the second most common gynaecological condition in the UK.

10% of individuals assigned female at birth AFAB have Endometriosis. That's an estimated 176 million worldwide - a similar number to those with Diabetes.

It currently takes on average between 7-9 years from the onset of symptoms to achieving a diagnosis in the UK.

Up to 50% of those diagnosed may experience difficulties conceiving.

The causes are unknown and there is currently no cure.