Endometriosis: Why It's So Often Missed and What to Do About It

What Is Endometriosis

Endometriosis occurs when tissue similar to the lining of the uterus (the endometrium) grows outside the uterus. This tissue most commonly develops on the ovaries, fallopian tubes, the lining of the pelvis, and the bowel or bladder - though it can appear almost anywhere in the body. Like the uterine lining, this tissue responds to hormonal changes during the menstrual cycle - it builds up, breaks down, and bleeds. But because it has nowhere to go, this process causes inflammation, pain, and over time, scar tissue and adhesions that can distort the anatomy of the pelvis.

The severity of symptoms does not necessarily correlate with the extent of disease. Some women with severe endometriosis have mild symptoms; others with minimal disease are significantly affected. This unpredictability is one of the reasons it can be so difficult to diagnose.

Why Is It So Often Missed

Several factors contribute to the long diagnostic delay. Period pain is so normalised in our culture that many women - and sometimes the clinicians they see - dismiss it as something to simply endure. Women are often told their pain is just "bad periods" and offered pain relief without further investigation. There is also no simple blood test or non-invasive test that can definitively diagnose endometriosis. A definitive diagnosis requires laparoscopy (keyhole surgery), though experienced gynaecologists and GPs who know the condition well can often make a working clinical diagnosis earlier.

The condition is also under-discussed and under-researched relative to its prevalence. This is changing, but awareness has historically been low among both the public and parts of the medical profession.

Symptoms to Be Aware Of

The hallmark symptom is pelvic pain, but endometriosis presents in many ways:

• Painful periods (dysmenorrhoea) - pain that is severe, debilitating, or gets progressively worse over time. Pain that requires strong pain relief or causes absence from work or school is not normal and should be investigated.
• Pain during or after sex (dyspareunia) - particularly deep pain rather than superficial discomfort
• Painful bowel movements or urination during periods - often dismissed as IBS or a bladder condition
• Pelvic pain outside of periods - chronic pelvic pain that is present throughout the cycle
• Heavy periods - including flooding, clots, or bleeding that soaks through protection
• Bloating - sometimes called "endo belly", significant abdominal bloating particularly around the time of a period
• Difficulty conceiving - endometriosis is found in approximately 30 to 50 per cent of women with infertility
• Fatigue - often underestimated, significant fatigue is a common symptom, particularly around menstruation

How It Is Diagnosed

A GP assessment involves taking a detailed history of your symptoms - their pattern, severity, and impact - as well as a physical examination. An ultrasound can identify endometriomas (ovarian cysts caused by endometriosis) and deep endometriosis involving certain structures, but a normal ultrasound does not rule out endometriosis. Many cases of superficial peritoneal disease are not visible on imaging.

Referral to a gynaecologist with expertise in endometriosis is appropriate when symptoms suggest the diagnosis or when initial management is not providing adequate relief. Laparoscopy remains the gold standard for confirming diagnosis, though clinicians experienced in endometriosis can often begin treatment based on clinical presentation without waiting for surgical confirmation.

Treatment Options

There is no cure for endometriosis, but effective management is possible. Treatment is highly individualised and depends on the severity of symptoms, the location and extent of disease, the impact on fertility, and the woman's own priorities.

• Pain management - anti-inflammatory medications (NSAIDs) such as ibuprofen are often a first step. They work best when taken early in the menstrual cycle rather than waiting for pain to peak.
• Hormonal treatments - the combined oral contraceptive pill, the hormonal IUD (Mirena), progestogen-only pills, and other hormonal therapies reduce or eliminate menstruation and can significantly reduce endometriosis pain. These do not treat the underlying disease but manage symptoms effectively for many women.
• Surgery - laparoscopic excision of endometriosis by a skilled surgeon can provide significant pain relief and improve fertility outcomes. For women with severe or complex disease, referral to an endometriosis specialist centre is important.
• Multidisciplinary care - physiotherapy (particularly pelvic floor physiotherapy), psychology support, dietary approaches, and pain management specialists can all contribute to a comprehensive management plan, particularly for women with chronic pelvic pain.

Endometriosis and Fertility

Endometriosis can affect fertility through several mechanisms - inflammation, distortion of pelvic anatomy, and impaired egg quality. However, many women with endometriosis conceive naturally. For those who are trying to conceive and experiencing difficulty, early referral to a fertility specialist is appropriate. Treatment of endometriosis - both surgical and medical - can improve fertility outcomes in certain situations.

When to Come In

If your periods regularly cause you significant pain, interfere with your daily life, or require strong pain relief, please do not accept this as normal. If you have any of the other symptoms mentioned above, bring them to your GP. You deserve to have your symptoms taken seriously, properly investigated, and effectively managed. Advocacy for yourself matters - if you feel dismissed, it is appropriate to seek a second opinion.