Advances in guidelines and imaging are reshaping how endometriosis is managed in primary care…

Endometriosis is increasingly recognised as a chronic, systemic disease that requires early identification, proactive medical management, and coordinated multidisciplinary care. Recent guideline updates supporting image-based diagnosis are expanding the role of GPs in endometriosis management.

The most significant changes in endometriosis care are occurring in general practice, where GPs play a pivotal role in both diagnosis and long-term management.

Updated guidelines providing diagnostic opportunities

Endometriosis was once considered a condition that could only be confirmed surgically, with laparoscopy seen as the gold standard and early referral to a gynaecologist the expected pathway. That long-held model is now changing, driven by advances in imaging techniques and updated clinical guidelines.

In 2022, the European Society of Human Reproduction and Embryology (ESHRE) updated its guidelines to recommend specialist ultrasound or MRI as part of the diagnostic work-up for endometriosis.¹ RANZCOG, NICE and other international bodies have since adopted the same approach.^2,3

Recognising the symptom maze

Endometriosis rarely presents as “just period pain.” Instead, symptoms vary widely and there is often a poor correlation between severity of symptoms and the amount or depth of disease. Pain may start as cyclical, linking with periods, but often becomes chronic.

Common symptoms include:

• Pelvic pain
• Painful or heavy periods
• Pain during or after sex
• Bowel or bladder symptoms (pain, bloating, constipation, diarrhoea)
• Back pain
• Fatigue (often the most burdensome symptom)
• Headaches, nausea, disturbed sleep.

These complaints can overlap with IBS, bladder pain syndrome, musculoskeletal or neurological disorders. Repeated pelvic inflammation also activates pain networks in the nervous system, producing referred pain in the back, bladder or bowel and triggering pelvic floor muscle spasm, which contributes to sharp, stabbing pains. Over time, pain becomes centralised, and patients may present with symptoms that extend well beyond the pelvis.

“Most of the time, patients won’t put all the symptoms together and understand how all of those symptoms are probably part of what’s going on.” – Professor Louise Hull

Many patients don’t connect the dots between their varied symptoms, making a careful history essential.

Two especially revealing questions to ask are:

• Did your pain begin with your periods?

• Have you ever missed school or work because of period pain?

If the patient answers ‘yes’ to either of these, it is a red flag (particularly in adolescence) and warrants further investigation.

Diagnosis as therapy

A confirmed diagnosis can be transformative, validating a patient’s experience and countering the normalisation of pain. It also guides decisions around treatment, fertility, and lifestyle planning.

International guideline updates and advances in ultrasound and MRI now allow earlier, non-surgical diagnosis, often within primary care.

In ~98% of cases, a positive finding with either a specialist ultrasound or a specialist MRI indicates endometriosis. However, the inverse is not true. A negative scan does not necessarily rule out disease because some of the lesions on the surface of the peritoneum may not have been picked up. In about 35% of negative scans, a person may still have endometriosis.

To ensure accuracy, a specialist in endometriosis scanning should conduct the ultrasound. While a normal pelvic scan looks at the anterior fornix of the vagina, giving a view of the uterus and the ovaries, endometriosis is usually behind the uterus. For this reason, it’s important the sonographer is trained to scan behind the uterus, looking along utero-sacral ligaments, the sliding sign and the bowel for nodules.

Practice tip: Be specific on referrals. Write “Please perform an endometriosis scan and look for the signs of endometriosis,” and refer to known specialists wherever possible.

Early imaging also plays a crucial role in surgical planning and fertility preservation. It helps confirm the presence and extent of disease, map complex lesions, and highlight potential complications. It can also help avoid repeat procedures and guide fertility-preserving decisions when disease is near the ovaries or bowel.

Transvaginal ultrasound may be unsuitable for younger adolescents or some transgender patients. In these cases, consider an MRI, though access, cost, and the need for specialist radiologist training can be significant barriers.

Note that for very young patients, lesions may be subtle and harder to detect on imaging.

Limitations of surgery

Surgery still plays a key role for many patients, particularly when lesions are driving pain. Removing the lesion takes away the pain trigger. However, surgery does not address muscular or nerve-related pain so pelvic floor physiotherapy, nerve-pain modulation and hormonal suppression are often still needed as part of comprehensive care.

Practice tip: Suppressing periods with hormonal therapy reduces the repeated inflammatory triggers that drive pain and disease progression. Initiating medical therapy early can provide meaningful relief while patients await specialist review.

A multidisciplinary approach

Surgery and hormones alone may not address the full burden of endometriosis. Pelvic floor spasm, neuropathic pain, fatigue, and fertility concerns often require broader strategies. GPs can play a pivotal role by coordinating multidisciplinary care and raising fertility early in the conversation.

Building networks with allied health professionals is key:

• Pelvic floor physiotherapists for muscle relaxation and retraining
• Pain specialists for neuropathic pain management
• Dietitians to support bowel health and reduce flare-ups
• Psychologists for coping strategies and the emotional burden of chronic pain
• Fertility specialists for early planning when ovarian involvement or surgical risk is identified.

Practical steps include considering early imaging to assess ovarian reserve, discussing egg freezing before surgery, and explaining how an endometriosis diagnosis can guide IVF protocols.

Explaining endometriosis to patients

Patients often struggle to make sense of their varied symptoms, so offering a clear and empathetic explanation of endometriosis can help validate their experience, counter the normalisation of period pain, reduce stigma, and strengthen rapport with patients.

An explanation grounded in the pathophysiology but phrased in a relatable way, can be helpful.

For example:

• Endometriosis is a chronic, inflammatory condition where tissue similar to the lining of the uterus grows outside the womb; most often in the pelvis.
• These lesions respond to hormonal changes each cycle, causing inflammation, scarring, nerve growth and pain.
• This irritation can lead to pain not just in the pelvis but also in the bladder, bowel, back and muscles. It can also cause whole-body symptoms such as headaches, tiredness and nausea.
• Over time, repeated pain signals can “rewire” the nervous system, making it extra sensitive. This means pain can spread and feel worse than before.

It’s also important to explain that endometriosis can cause pain out of proportion to imaging results, and that symptoms may look very different from person to person. This helps explain why many may have seen multiple specialists before a gynaecological diagnosis is considered, why imaging cannot reliably exclude the condition and why surgery does not always resolve symptoms.

A useful resource to aid these conversations is EndoZone.⁴ This patient-friendly website contains information to support people with endometriosis and their clinicians, including explainer videos, a symptom checker and self-monitoring symptom ‘reports’ that patients can fill out before GP appointments to focus limited consultation time.

Key takeaways:

• Recognise the wide range of presentations, which may include pelvic, bowel, bladder, musculoskeletal, or systemic features.
• Start medical management proactively by initiating hormonal therapy while patients await specialist care.
• Request specialist imaging by specifying “endometriosis scan” and referring to experienced sonographers or radiologists.
• Adopt a multidisciplinary approach by integrating allied health and raising fertility planning early.

References:

1. ESHRE. ESHRE Guidelines Endometriosis. February 2022. Available at: https://www.eshre.eu/Guideline/Endometriosis

2. RANZCOG. Australian Living Evidence Guideline: Endometriosis. March 2025. Available at: https://ranzcog.edu.au/womens-health/endometriosis/

3. NICE. Endometriosis: diagnosis and management. November 2024. Available at: https://www.nice.org.uk/guidance/NG73

4. EndoZone. Available at: https://www.endozone.com.au/