Why Does Endometriosis Take Years to Diagnose?

What is endometriosis?

Endometriosis is a condition where tissue similar to the lining of the uterus grows outside the uterus and can be found on the ovaries, fallopian tubes, bowel, bladder and other areas within the pelvis. Each month, this tissue responds to hormonal changes in the same way as the uterine lining, which can lead to inflammation, irritation and the formation of scar tissue.

Ongoing inflammation can contribute to chronic pelvic pain and changes in how the pelvic organs function. The severity of endometriosis does not always match the level of pain experienced. This is why some women may have significant symptoms even when the condition appears mild and the condition may be more visible for others but they have less symptoms.

Endometriosis symptoms

Pain and symptoms that stop you from going to school, work or normal activities should not be brushed aside. Symptoms linked with endometriosis can include:

• Severe period pain
• Pelvic pain outside of your period
• Pain during or after sex
• Pain when urinating
• Pain during bowel movements or bowel changes
• Heavy or irregular bleeding
• Bloating and nausea
• Lower back or leg pain
• Fatigue
• Difficulty falling pregnant

Symptoms can build slowly over time and you may not realise how much you have adjusted your life around pain until you stop and write it down. Dr Kelly Hankins advises that if pain needs consistent pain relief, heat packs, time in bed or cancelled plans, that it deserves specialist assessment and treatment.

Why diagnosis can take years

Endometriosis can take time to diagnose for several reasons. One challenge is that symptoms vary widely between individuals, and the severity of pain does not always reflect the extent of the condition, making it difficult to recognise a clear pattern early on.

Symptoms of endo can also overlap with other conditions including IBS, bladder pain syndrome, pelvic floor muscle dysfunction, ovarian cysts, adenomyosis and fibroids. Because of this overlap, it can take time to identify endometriosis as the underlying cause.

Unfortunately, another factor is that period pain has been normalised. A lot of girls and women are told that painful periods are a normal part of life. This can cause confusion in recognising when pain is not usual and delays in requesting specialist referral from their GPs.

As well as these, in the past, endometriosis was only diagnosed through keyhole surgery (laparoscopy), with direct visualisation and confirmation under a microscope. While this is still the only way to definitively diagnose endometriosis, it is now not always the first step. Depending on symptoms and because surgery carries risk, doctors may begin treatment based on suspected endometriosis.

As a result of all of these combined, it is not uncommon for women to experience symptoms for several years before receiving a diagnosis.

Severe pain is not normal

A period can be uncomfortable. Severe pain that disrupts normal life is different.

Missing work, staying home from school, avoiding sex, planning your calendar around pain or needing to lie down every month should not be accepted as your norm.

The same applies if pain is getting worse, happening outside your period or affecting your bowel, bladder, sleep or movement.

You do not need to have every symptom before asking for help. One symptom that keeps affecting your life is deserving of specialist attention.

What to track for suspected endometriosis

A symptom diary can help your GP and gynaecologist see patterns that may be hard to explain during one appointment. It is helpful to track:

• Pain location
• Pain severity
• Bleeding pattern
• Days missed from work or study
• Pain during sex
• Bowel symptoms
• Bladder symptoms
• Fatigue
• Medication use
• Heat pack use
• Cycle timing
• Symptoms that stop exercise or sleep

If the impact of your symptoms are specific, like regularly missing 2 work days a month because of pain, let your doctor know. That level of detail can help guide next steps.

When to see a Gynaecologist

A gynaecology review helps confirm if endometriosis is likely, rule out other causes of pelvic pain and map a clear plan forward so you are not left managing symptoms alone.

It will include discussion about your cycle, pain pattern, previous treatments, fertility goals, bowel and bladder symptoms and how your symptoms are affecting daily life.

A gynaecologist or women’s health specialist, like Dr Kelly Hankins, can help you understand what is happening and guide you through your suitable treatment options. This can include pain management, hormonal treatments, pelvic floor physiotherapy, fertility planning, ongoing monitoring or surgery if needed.

Because endometriosis does not affect every woman in the same way, it is not just about diagnosis, but a clear, individualised plan that helps reduce pain and support your health.

Endometriosis FAQs