Endometriosis: Breaking down the symptoms, stages, causes and treatment

Endometriosis occurs when tissue resembling the lining of the uterus grows outside the uterus.

It commonly develops around the ovaries, fallopian tubes and pelvic lining, although it can occur elsewhere.

The tissue responds to hormonal changes during the menstrual cycle.

Repeated inflammation can cause bleeding, irritation, scar tissue and adhesions - bands of tissue that can make organs stick together.

It is a chronic condition and can affect work, education, relationships, sexual health and everyday life.

WHO estimates that about 10% of women and girls of reproductive age are affected globally.

It is bigger than painful periods

Painful periods are one of the best-known symptoms, but endometriosis can produce much more.

Symptoms may include chronic pelvic pain, heavy or prolonged periods, pain during or after sex, painful bowel movements or urination, abdominal bloating, fatigue and gastrointestinal symptoms.

Some people have little or no noticeable pain.

The condition can also affect fertility, particularly when inflammation, adhesions or ovarian disease interfere with normal reproductive anatomy.

The four stages of endometriosis

Doctors commonly classify endometriosis using the revised American Society for Reproductive Medicine system:

Stage I – Minimal: small, mostly superficial lesions.

Stage II – Mild: more lesions, with some deeper involvement.

Stage III – Moderate: deeper lesions, ovarian endometriomas and adhesions may be present.

Stage IV – Severe: extensive disease, significant adhesions and more substantial ovarian involvement.

But Stage IV does not mean “terminal”, nor does it automatically mean the worst pain.

The staging system mainly describes the extent and location of disease.

Pain severity does not reliably correspond to the stage.

Someone with limited disease can experience severe pain, while extensive disease may produce relatively few symptoms.

Why it can take years to get a diagnosis

There is no single test that can identify every case.

Doctors typically begin with symptoms and medical history, followed by examination and, where appropriate, ultrasound or MRI.

Laparoscopy may be used in selected cases, particularly when surgery is also being considered.

Importantly, modern guidelines no longer require every suspected patient to undergo surgery simply to establish a diagnosis.

WHO reports diagnostic delays of four to 12 years in many settings.

Lack of awareness and limited access to specialist care are among the factors contributing to the delay.

There is treatment, but no simple cure

Treatment depends on symptoms, disease location, age, fertility plans and previous treatment.

Options include pain medicines, hormonal treatment and surgery

Hormonal therapies can reduce hormonal stimulation of endometriosis and control symptoms.

Surgery may be considered to remove lesions, endometriomas or adhesions in appropriate cases.

People experiencing infertility may also require fertility treatment, including assisted reproductive techniques such as IVF.

Treatment therefore isn't determined by the stage alone.

The person's symptoms, priorities and reproductive plans matter too.

The pain should not simply be dismissed

Endometriosis does not explain every painful period.

But pain that repeatedly disrupts work, school, sleep, sex or ordinary life deserves medical attention.

The most important distinction is simple: Having a period can be uncomfortable; debilitating, persistent pelvic pain is something else.

And because endometriosis can progress silently in some people, recognising that difference can be the first step towards getting the right assessment and treatment.