Endometriosis: The Lowdown (and Why It's More Than Just Period Cramps)

Endometriosis is an important condition to understand because period pain can be so severe that it disrupts daily life, and in some cases, endometriosis is responsible for some (or all) of that pain. Endometriosis is a common disease, and in some women, it can progress if left untreated. We know that endometriosis can negatively impact fertility, and as the disease advances, that impact increases.

The good news is that there are many treatment options available that can significantly improve pain and fertility outcomes. The sooner treatment starts, the better—helping you get back to living life on your terms.

This is why it is so important to feel empowered to push for the right care if you experience period pain. There are two key reasons for this:

1. To improve your quality of life.

2. To ensure you don’t have a condition that might affect your fertility (if having children is something you want in the future).

What Makes Endometriosis So Tricky?

• Many people with period pain do not have endometriosis.

• Period pain and pelvic pain often come from multiple sources, such as the uterus, pelvic floor muscles, or bowels.

• The best way to definitively diagnose endometriosis is through surgery, but performing operations on everyone with period pain is not ideal. Doctors aim to balance the risks and benefits of any test or treatment.

• Some people with endometriosis do not experience pain at all.

Endometriosis can be complex and confusing, but let’s break down what we do know to help make sense of it.

The Statistics.

How Common Is Period Pain?

Globally, more than 50 percent of women and around 90 percent of female adolescents who have periods experience period pain. Around 70 percent of adolescents report that their pain is moderate to severe.

How Common Is Endometriosis?

The often-quoted statistic is that 10 percent of women have endometriosis, but this figure is based on studies of women already receiving medical care. This means the number could be lower in the general population, with some research suggesting rates as low as 1–5 percent.

However, nearly two-thirds of adolescents with ongoing severe pelvic pain are eventually found to have endometriosis.

What Is Endometriosis?

To understand endometriosis, we need to take a look inside the pelvis.

Each month, the lining of the uterus (endometrium) builds up and then sheds if pregnancy does not occur—this is what we call a period. This process is regulated by hormones, and a certain degree of inflammation and discomfort is normal during menstruation.

However, in some women, clusters of endometrial-like cells grow in places outside the uterus. These endometriosis nodules are most commonly found on the lining of the pelvis (peritoneum)—a thin film-like tissue similar to cling wrap that protects and lubricates pelvic organs.

Since the peritoneum is packed with nerve endings, these misplaced endometrial cells can cause significant pain and inflammation.

Endometriosis can also sometimes be found outside the pelvis, including on the bowel, diaphragm, or even within muscle or fatty tissue under the skin, though these cases are rare.

Why Does Endometriosis Cause Problems?

Endometriosis nodules respond to hormones just like the uterine lining does, meaning they bleed and inflame surrounding tissue during menstruation. This can lead to:

• Chronic pelvic pain.

• Scarring inside the body.

• Reduced fertility.

• Ovarian cysts (endometriomas), which can damage the ovaries and fallopian tubes.

Endometriosis is classified into four stages based on its severity:

• Stage 1 (Minimal) – Small, isolated patches of endometriosis.

• Stage 2 (Mild) – More widespread lesions but little scarring.

• Stage 3 (Moderate) – Endometriomas and moderate scar tissue present.

• Stage 4 (Severe) – Extensive disease, large cysts, and significant scarring, sometimes affecting nearby organs like the bowel or bladder.

What Are the Symptoms of Endometriosis?

Endometriosis symptoms vary from person to person, but common issues include:

• Severe period pain.

• Pelvic pain outside of menstruation.

• Painful sex.

• Bowel and bladder dysfunction, including bloating, constipation, diarrhoea, or irritable bowel syndrome (IBS).

• Fatigue and poor sleep.

• Depression, anxiety, and mood disturbances.

• Fertility challenges.

Chronic pain can also affect how the nervous system processes pain, making the body more sensitive over time.

Do I Need a Diagnosis Before Starting Treatment?

No. You do not need a formal diagnosis of endometriosis to begin medical treatment for period pain.

In New Zealand, it is estimated that it takes an average of 8.7 years to receive a formal diagnosis of endometriosis. This includes:

• 2.9 years from the onset of symptoms to the first doctor’s visit.

• 5.8 years from the first doctor’s visit to diagnosis.

First-line treatments include pain relief and hormone therapy, such as the combined oral contraceptive pill or minipill. If these medications work well and provide relief, surgery may not be necessary.

However, if pain persists despite medication, or if fertility concerns arise, surgical diagnosis and treatment may be recommended.

How Does Endometriosis Affect Fertility?

Endometriosis can reduce fertility by:

• Causing inflammation in the pelvis.

• Blocking or damaging the fallopian tubes.

• Disrupting ovulation.

However, many women with endometriosis conceive naturally. While it can be a barrier for some, pregnancy is still possible, especially with proper management and treatment.

Why Is It So Hard to Get Help for Period Pain?

Several factors can make accessing care difficult:

• Lack of awareness – Many people do not know what is “normal” and may downplay their symptoms.

• Dismissal of symptoms – Some women feel unheard by their healthcare providers.

• Limited resources – Public health waitlists can be long.

• Outdated medical perspectives – Some doctors may not be up to date with current best practices for endometriosis management.

If pain persists despite treatment, if medication side effects are intolerable, or if conception is proving difficult, it is time to push for surgical diagnosis and treatment.

How Bad Is Endometriosis, Really?

For most people, endometriosis is manageable with the right treatment plan. Many women go on to have families, pursue careers, and live fulfilling lives.

That said, a small group of people are significantly affected, facing extreme pain and disruption to their daily lives. For those in this situation, support from loved ones, healthcare providers, and mental health professionals can make a significant difference.

After surgical treatment, 70 percent of people do not experience a recurrence of endometriosis within five years.

Final Thoughts: Can Endometriosis Be Cured?

Many people say that "there is no cure for endometriosis", but this is not entirely accurate.

While endometriosis is a chronic condition, treatment—whether through surgery, hormone therapy, or pain management—can significantly reduce symptoms and improve quality of life.

If you ask, “Can endometriosis be cured?”, the answer is:

For many, yes.