Endometriosis: symptoms, diagnosis and treatment options explained

1. Introduction

Endometriosis is a condition in which cells similar to the lining of the womb grow in other parts of the body. The NHS explains that they are often found on the ovaries, the fallopian tubes and the lining of the pelvis, and sometimes on the bladder or bowel ^[1]. Symptoms occur when these patches break down and bleed each month but the blood has no way out of the body ^[1].

The World Health Organization (WHO) describes it as a long-term condition that causes inflammation and scar tissue. It can affect people from their first period until menopause, and it is estimated to affect about 10% of women of reproductive age, around 190 million people ^[2].

2. Causes and risk factors

The cause is not known ^{[1, 2, 3]}. WHO says research points to a link with how the immune system works, and people with endometriosis have higher rates of some other immune-related conditions ^[2]. MedlinePlus lists these factors that raise the chance ^[3]:

• A mother, sister or daughter with the condition
• A first period before age 11
• Short cycles of under 27 days
• Heavy periods that last more than 7 days

Having been pregnant before, starting periods late or breastfeeding is linked to a lower chance ^[3]. WHO says no method is known to prevent endometriosis ^[2].

3. Signs and symptoms

Symptoms vary from person to person, and some people have none ^[2]. The NHS describes ^[1]:

• Severe period pain that stops you from doing normal activities
• Heavy periods, soaking through pads or tampons every one to two hours
• Pain in the lower tummy or back at any time of the month
• Pain when passing urine or opening the bowels
• Pain during or after sex
• Extreme tiredness
• Difficulty getting pregnant, low mood and anxiety

Less often, patches in the chest can cause pain or bleeding there, which can lead to breathlessness or coughing up blood ^[1]. WHO adds that heavy bleeding can lead to iron deficiency and tiredness ^[2]. Pelvic pain should not be treated as normal, because that belief can delay care ^[2].

4. Diagnosis and tests

Diagnosis often takes a long time. WHO reports an average of 4 to 12 years ^[2]. One reason is that the symptoms overlap with other problems such as fibroids, pelvic infection and irritable bowel syndrome ^[1].

Doctors usually begin with a talk about your symptoms and family history. They may do a physical and internal examination and order blood tests. Detailed information, such as when pain happens and how heavy bleeding is, helps ^{[1, 2]}. Next steps can include:

• An ultrasound or MRI scan, which can support a diagnosis ^{[1, 2]}.
• A laparoscopy, a keyhole operation where a small camera is passed through a tiny cut in the tummy. It can confirm the diagnosis, and the surgeon may remove patches during the same operation ^{[1, 3]}.

WHO notes that a diagnosis based on symptoms and scans is possible without surgery ^[2]. MedlinePlus says surgery is the only way to be certain ^[3].

5. Treatment and management

No treatment removes the condition completely, so care focuses on controlling symptoms, especially pain ^{[1, 2]}. WHO says the choice depends on how severe it is, your wishes, side effects, cost and whether you want to become pregnant ^[2].

• Pain relief. Painkillers, including anti-inflammatory ones, are usually part of the first step ^{[1, 2, 3]}.
• Hormonal medicines. Options such as the combined contraceptive pill, other hormonal contraceptives and medicines that alter hormone levels can reduce pain. Some medicines cause a temporary menopause-like state, and periods return when they stop. These are not used when trying to conceive ^{[1, 2, 3]}.
• Surgery. This can remove patches, scar tissue and cysts when other treatment has not worked. Symptoms can return later. A hysterectomy (removal of the womb), usually with the ovaries, is sometimes considered if you are not planning pregnancy, but WHO notes it does not remove every symptom ^[2].
• Pain support. Physiotherapy and talking therapy called cognitive behavioural therapy can reduce pain and improve quality of life. Support groups can also help ^[2].

Your doctor will explain the risks and side effects of each option ^[1].

6. Fertility

Endometriosis can make it harder to get pregnant. WHO says between 25% and 50% of women with infertility have endometriosis ^[2]. The NHS says you can be referred to a fertility specialist and surgery may be offered if the condition affects fertility ^[1]. Treatments such as assisted conception may be recommended ^{[2, 3]}.

7. Living with endometriosis

Experience varies. Treatment usually helps control symptoms, but some people have symptoms for many years that affect work, relationships and study ^[1]. Symptoms usually stop after menopause, although they can sometimes continue ^[1]. Support for pain, tiredness and mood is part of care, and WHO notes that stigma about period pain makes it harder to seek help ^{[1, 2]}.

8. When to see a doctor

The NHS advises seeing a doctor if you think you may have endometriosis, if symptoms affect your everyday life, work or relationships, or if symptoms continue or worsen despite treatment ^[1]. WHO says a detailed history of pain, bleeding and other symptoms helps with diagnosis, so write these down before your appointment ^[2].

In an emergency, call your local emergency number (112 in India, 911 in the United States).

9. Conclusion

Endometriosis is common, can be hard to recognise and is often diagnosed late. WHO says early diagnosis and good care may reduce long-term symptoms, and the NHS describes support for pain, tiredness, mood and fertility as part of care. Your doctor decides which treatment suits you.