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What Is Endometriosis?

Endometriosis is a condition where tissue similar to the lining of the uterus grows in places it shouldn’t. These growths can form lesions, nodules, and cysts, most often found in the pelvis—such as the Pouch of Douglas, ovaries, bowel, bladder, and ligaments.

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In some cases, adhesions (fibrous scar tissue) can develop, causing internal organs or tissues to stick together. Cysts on the ovaries, known as endometriomas, may also form, especially in more advanced stages.

Importantly, the severity of symptoms doesn't always match the extent of the disease. Someone with minimal visible endo might experience debilitating symptoms, while another person with widespread endo may have few or none.

Not everyone assigned female at birth with endometriosis will have monthly symptoms or painful periods—endo affects everyone differently.

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In Aotearoa, it’s estimated that around 120,000 people assigned female at birth are living with endometriosis. (To date, no confirmed cases have been found in people assigned male at birth in Aotearoa.)

Common symptoms

Endometriosis affects everyone differently, but common symptoms include:

Pelvic & Menstrual Symptoms:

  • Pelvic pain (can be severe and not always tied to periods)

  • Pain with ovulation

  • Premenstrual spotting

  • Heavy bleeding or bleeding between periods

  • Lower back pain

  • Premenstrual syndrome (PMS)

Bowel & Bladder Symptoms:

  • Bloating

  • Painful bowel movements

  • Constipation or diarrhoea

  • Pain with urination (in some cases)

  • Symptoms that mimic IBS

Other Common Symptoms:

  • Pain during or after sex

  • Subfertility or infertility

  • Chronic fatigue

  • Immune system issues

  • Constant tiredness

The Impact of Endometriosis

Endometriosis can have a profound effect on quality of life. It can impact:

  • Daily routines and physical health

  • Relationships and intimacy

  • Participation in school or work

  • Mental health and emotional wellbeing

Even when the disease is invisible to others, the impact is very real.

What Can Endometriosis Be Mistaken For?

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Endometriosis often shares symptoms with other conditions. This can lead to misdiagnosis or delays in getting the right help. Conditions that endo can be confused with include:

  • Irritable Bowel Syndrome (IBS)

  • Pelvic Inflammatory Disease (PID)

  • Polycystic Ovary Syndrome (PCOS)

  • Coeliac Disease

  • Fibromyalgia

  • Ovarian Cancer

Stages of Endometriosis

Endometriosis is often described in four stages (from 1 to 4), based on how much tissue is present, how deep it goes, and whether organs are affected. It’s important to note that stage doesn’t reflect pain levels or how someone feels — someone with Stage 1 can have severe symptoms, while someone with Stage 4 might have none.

Stage 1

A few small, shallow lesions or spots of endometriosis. May be found on the peritoneum (the lining of the pelvic cavity) with little to no scar tissue. Often missed or dismissed as “nothing serious.”

Stage 2

More noticeable lesions that may be deeper and slightly more widespread. There may be minimal scar tissue (adhesions), but organs are usually not affected yet.

Stage 3

Endo is more extensive and may begin to infiltrate organs like the ovaries or pelvic walls. Adhesions (scar tissue) may form, and ovarian endometriomas (chocolate cysts) may be present.

Stage 4

Deeply infiltrating endometriosis with large lesions, significant adhesions, and possible distortion of the anatomy. Organs such as the ovaries, bowel, or bladder may be affected, and mobility of organs can be reduced due to scarring.

Getting a Diagnosis

Getting diagnosed with endometriosis can take time — international studies show it takes an average of 10 years. That’s why tracking your symptoms and being your own best advocate is important.

Diagnosis may involve:

  • A detailed medical history

  • Pelvic exam

  • Pelvic ultrasound (can show cysts but can’t confirm endo)

  • MRI (in some cases)

However, the only definitive way to diagnose endometriosis is through laparoscopy — a minor surgical procedure using a camera to look inside the pelvis.

Medical Management & Natural Supports

Mate kirikōpū / Endometriosis doesn’t have a cure, but there are many ways to help manage the symptoms. What works for one person might not work for another and that’s okay. You deserve a treatment plan that respects your body and your choices.

 Pain Relief

  • NSAIDs (like ibuprofen or naproxen) are often used to reduce inflammation and ease pain.

  • For more intense symptoms, stronger medications may be prescribed. Your doctor can help create a pain management plan that works for you.

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TENS Machine

A TENS machine (Transcutaneous Electrical Nerve Stimulation) is a small, battery-powered device that sends gentle electrical pulses through sticky pads placed on your skin (usually the lower belly or back). These pulses help block pain signals and trigger your body to release natural painkillers.

TENS can be a great drug-free tool for managing chronic pain — and some people with endo find it helpful during flares or periods.

 

CBD & THC (Medical Cannabis)

Many people with endometriosis in Aotearoa are exploring medical cannabis — especially CBD oil (non-intoxicating) and THC (which may help with pain, inflammation, and sleep). While not a cure, it can be a useful tool in some pain plans.

  • CBD may help reduce inflammation, anxiety, and nerve pain

  • THC may help with deep pelvic pain, nausea, and sleep disruption

Medical cannabis requires a prescription in Aotearoa. Talk to a doctor who’s open to discussing this option, or reach out to us for guidance.

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Hormone Therapy

Hormonal treatments aim to suppress or stabilise the cycle to reduce inflammation and growth of endometrial-like tissue. These might include:

  • The combined oral contraceptive pill

  • Progesterone-only pills

  • IUDs like the Mirena

  • In some cases, injections or hormonal implants

These options can help for some, but they don’t work for everyone — and it’s okay to stop if it doesn’t feel right for your body.

Surgical treatment

Laparoscopic surgery (minimally invasive surgery using a camera) is considered the gold standard treatment for endometriosis — but only when it is performed by a skilled surgeon who can excisely remove (not just burn off) the endometriosis tissue.

 Excision vs Ablation:

  • Excision surgery involves carefully cutting out endometriosis tissue from the root, which leads to better long-term results and fewer recurrences.

  • Ablation (burning or laser treatment) removes the surface but may leave deeper endo behind, which can regrow or continue causing pain.

That’s why it’s important to:

  • Ask if your surgeon performs excision (not just ablation)

  • Get a copy of your surgical notes

  • Understand what areas were checked and what was removed

Surgery can:

  • Help reduce pain and inflammation

  • Improve fertility outcomes for some

  • Free up organs stuck together by scar tissue (adhesions)

  • Restore normal anatomy

But it’s not a guaranteed fix, some people may need more than one surgery, and symptoms may return over time. That’s why follow-up support, holistic care, and pain management are still important after surgery.

Hysterectomy

A hysterectomy (surgical removal of the uterus) is sometimes offered when:

  • Symptoms are severe and have deeply affected quality of life

  • Other treatments haven’t helped

  • Adenomyosis (endometrial tissue growing within the uterine muscle) is also present

  • The person no longer wishes to preserve fertility

But it’s important to know:

Hysterectomy is not a cure for endometriosis.

Why?

  • Endometriosis can grow outside the uterus, including on the bowel, bladder, diaphragm, and pelvic walls

  • If excision is not done at the same time, any remaining endo may continue to cause pain

  • Removing the uterus doesn’t remove endo growing elsewhere in the body

If ovaries are removed (oophorectomy), it may trigger early menopause, and some people may be prescribed menopausal hormone therapy (MHT) to support their hormones and bone health.

For some, hysterectomy can bring relief, especially if adenomyosis is also present. But it’s a big decision and should come with:

  • Full informed consent

  • A clear surgical plan for managing both the uterus and any endo

  • Emotional and physical aftercare

Final Thoughts on Surgery, Surgical treatment is a powerful tool, but it’s just one part of managing endometriosis. Many people benefit from a combination of surgery, pain relief, hormonal tools, natural supports, and community connection. You deserve a plan that centres your goals, your symptoms, and your quality of life.

 You're Not Alone 

Mate kirikōpū / endometriosis is a complex, life-altering illness — but support is available. Whether you're looking to understand your symptoms, explore treatment options, or feel less alone, Endo Warriors Aotearoa is here to walk alongside you.

🔗 Visit the Endometriosis Hub 

🔗 Join Our Private Support Chat Group
🔗 Follow Us on Instagram for Tips, Tools & Real Talk

You're part of a community that believes you, sees you, and supports you.

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