Endometriosis affects around 1.5 million women in the UK, yet it remains under-recognised. Many women endure debilitating symptoms for years before receiving a diagnosis. Greater awareness is helping to change this, with earlier recognition and improved treatment enabling many to receive help sooner and achieve a much better quality of life.
What is Endometriosis?
Endometriosis occurs when tissue similar to the lining of the womb grows outside the uterus. These growths are most commonly found in the pelvis, affecting the ovaries, fallopian tubes, bladder or bowel, but can also occur elsewhere in the body. Like the lining of the womb, this tissue responds to the body’s monthly hormonal changes, becoming inflamed and bleeding during the menstrual cycle. This leads to pain and the formation of scar tissue (adhesions), which over time can affect the normal function of pelvic organs.
Doctors do not yet know exactly why endometriosis develops. The condition tends to run in families, so someone with a mother or sister who has endometriosis is at greater risk.
Common Symptoms
Symptoms vary widely. Some women have only mild symptoms, while others experience pain that significantly affects their daily lives. The severity of symptoms does not always reflect how extensive the disease is. Common symptoms include:
- Severe period pain
- Persistent pelvic pain
- Pain during or after sex
- Heavy menstrual bleeding
- Pain when opening the bowels or passing urine
- Abdominal bloating
- Tiredness
Some women also experience difficulty becoming pregnant, although many women with endometriosis conceive naturally. Because many of these symptoms overlap with conditions such as irritable bowel syndrome, bladder disorders or pelvic infections, diagnosis is not always easy.
Why is Diagnosis Often Delayed?
One of the greatest challenges women with endometriosis face is the delay in diagnosis, with many waiting several years before receiving a diagnosis. Painful periods are often regarded as a normal part of growing up, meaning symptoms may not initially be taken seriously. Some women feel embarrassed discussing menstrual or sexual symptoms, while healthcare professionals may first need to exclude other possible causes of pelvic pain.
Greater public awareness, improved education and increased recognition among healthcare professionals are helping to shorten these delays, but further progress is still needed.
How is Endometriosis Diagnosed?
If your GP suspects endometriosis, they will begin by asking about your symptoms and medical history. This is usually followed by an examination of the abdomen and pelvis. Tests may be arranged to rule out other conditions, including blood tests to check for anaemia if periods are heavy, as well as tests for infection such as vaginal swabs.
Many women will be offered an ultrasound scan of the pelvis, which can identify some forms of endometriosis. An MRI scan may sometimes be recommended if more detailed imaging is needed. Women with persistent or severe symptoms are often referred to a gynaecologist. In some cases, a keyhole operation called a laparoscopy may be recommended. This involves inserting a small camera through the abdominal wall under a general anaesthetic to look directly inside the pelvis and, if necessary, take tissue samples or treat endometriosis during the same procedure.
Not everyone needs a laparoscopy before treatment begins. Increasingly, doctors can make a diagnosis based on symptoms, examination findings and imaging, allowing treatment to start earlier.
Treatment Options
There is currently no cure for endometriosis, but treatments are available to help control symptoms and improve quality of life. The best treatment depends on factors such as the severity of symptoms, the woman’s age and whether she wishes to become pregnant.
Painkillers can help many women. Hormonal treatments such as combined oral contraceptives are commonly used to reduce or stop menstrual periods, which can lessen pain. Some women with more severe disease may benefit from specialist hormone treatments that temporarily reduce the body’s production of oestrogen.
If symptoms remain troublesome despite medication, surgery may be considered. Laparoscopic surgery can remove areas of endometriosis and scar tissue and may improve both pain and fertility in selected patients. Women who experience difficulty becoming pregnant may be referred to a fertility specialist. Many women with endometriosis go on to have successful pregnancies, either naturally or with fertility treatment.
Living with Endometriosis
Endometriosis affects far more than physical health. Chronic pain and tiredness can interfere with work, education, family life and relationships. Living with a condition that is sometimes poorly understood also affects women’s mental wellbeing.
Many women find it helpful to learn more about the condition and seek support from others with similar experiences. Patient organisations such as Endometriosis UK provide information, support groups and practical advice. Sharing experiences with others can help women feel less isolated and more confident in managing their condition.
Painful periods should not simply be accepted as “normal” if they are preventing you from living your life. Earlier diagnosis, better imaging techniques and advances in medical and surgical treatment mean that many women with endometriosis can now receive effective care and enjoy a much better quality of life than was possible in the past.
