Endometriosis and the Whole Person

Why can someone have severe pelvic pain when a scan appears normal, or continue to hurt after treatment? Endometriosis challenges us to investigate the disease while also understanding how pain affects the rest of the person.

Gerry at The Health Equation

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Gerry Gajadharsingh writes:

A diagnosis that begins with listening

Endometriosis is a condition in which tissue similar to the lining of the uterus is found outside it. It can be associated with inflammation, fibrosis, adhesions and pain, but its expression varies considerably. Some people have extensive disease and relatively little pain; others experience life-changing pain with limited visible disease. The severity of symptoms does not reliably reveal the extent of lesions. In the UK, it is estimated to affect about one in ten women and people assigned female at birth of reproductive age, often cited as approximately 1.5 million people. That is a prevalence estimate, not the number of new cases each year.

Painful periods that disrupt school, work or normal life should not be dismissed as something to endure. I ask about pain before, during and after bleeding; pain with bowel movements, urination or sex; persistent pain between periods; and fatigue, bleeding and fertility concerns. A cycle-related pattern is a valuable clue, although pain can become continuous. The answer lies in the chronology and the impact, not just a number on a pain scale.

A normal scan is not the end of the investigation

NICE advises transvaginal ultrasound for people with suspected endometriosis, even when examination is normal. It can identify an ovarian endometrioma, some deep disease and alternative causes of symptoms. However, superficial disease may not be visible. A normal examination or scan does not exclude endometriosis; persistent symptoms may still justify referral. Specialist ultrasound or MRI can help map suspected deep disease involving the bowel, bladder or ureter. Laparoscopy remains an option in selected cases, but treatment need not always wait for surgical confirmation.

Clinical reasoning must also remain open. Adenomyosis, fibroids, irritable bowel syndrome, bladder pain syndrome, pelvic infection and musculoskeletal or nerve-related pain may coexist with, resemble or complicate endometriosis. A previous diagnosis cannot explain every new episode of pain.

Could a saliva test help?

A newer option deserves careful attention. The Doctors Laboratory offers Ziwig Endotest, which analyses a pattern of microRNAs in a saliva sample. In a prospective external validation study of 971 symptomatic patients aged 18 to 43, the test showed 97.3% sensitivity and 94.1% specificity. That is promising, particularly when symptoms suggest endometriosis but conventional imaging is inconclusive. However, the study population had a high prevalence of disease, so its predictive values will differ in a broader clinical population. The test does not show where lesions are, map deep disease, or replace assessment of other causes of pelvic pain. TDL’s stated eligibility is ages 18 to 43, and the private test is costly; its usefulness depends on whether the result will actually change the next decision. NICE has proposed evidence-generating NHS use while longer-term utility and impact are assessed. At the time of writing, that guidance is still a draft, not a blanket recommendation for everyone with pelvic pain.

My Integrated Regulatory Systems Framework (IRSF) organises seven interacting systems. In endometriosis, it helps me ask why this person has these symptoms now and which aspects we can meaningfully address. It does not imply that all seven systems cause the lesions.

The endocrine system directs attention to menstrual timing, ovarian function, hormonal treatment and fertility goals. The immune and inflammatory system recognises local inflammatory signalling while reminding us that no routine inflammation blood test diagnoses endometriosis. The neural system considers the way persistent pain can increase sensitivity in pelvic tissues and the wider nervous system. Pain amplification is a physiological process; it does not mean that the pain is imaginary or merely psychological. Sleep loss, fear and distress can further increase the burden without being the original cause.

The musculoskeletal system prompts examination of the back, hips, abdominal wall, diaphragm and pelvic floor where appropriate. Protective muscle guarding and reduced movement may add treatable pain even when underlying disease needs specialist care. The respiratory system asks how breathing changes with pain and whether gentle breathing work can support comfort, movement and a sense of control. The circulatory system reminds us to consider the effects of heavy bleeding and possible iron deficiency, as well as the wider health impact of reduced activity. The metabolic system asks whether nutrition, energy availability and fatigue affect recovery and daily function. These domains help formulate the patient’s experience; they are not substitutes for gynaecological diagnosis.

What can osteopathic care reasonably offer?

As an osteopath, I may find spinal, hip or abdominal wall problems that deserve treatment in their own right. Gentle, symptom-guided manual treatment, movement rehabilitation and breathing retraining may help someone feel more comfortable and function better. Where pelvic floor overactivity is suspected, a suitably trained pelvic health practitioner can be particularly valuable. My treatment aims must be specific and reviewed: can the person move more easily, sleep better or tolerate daily activity with less pain?

Manual treatment cannot remove endometriosis lesions, and external manipulation cannot be assumed to break internal adhesions or restore pelvic organ circulation. A plausible anatomical idea is not evidence of a clinical result. Osteopathic input is best viewed as an adjunct to appropriate investigation and medical or surgical care.

Treatment follows the person’s priorities

Analgesia, hormonal treatment, surgery and specialist fertility advice all have roles, depending on symptoms, previous response, contraindications and plans for pregnancy. Hormonal suppression may reduce pain while it is used; it is generally unsuitable as a means of achieving pregnancy during treatment. Surgery can remove or destroy visible lesions and can substantially help selected patients, especially where anatomy or organ involvement is important. Yet surgery is not a guaranteed cure: lesions or symptoms may persist or recur, and established nerve sensitivity, pelvic floor guarding or coexisting disorders can continue to generate pain. Some people benefit from postoperative hormonal suppression when pregnancy is not immediately desired; decisions should be individualised. A return of pain does not automatically prove recurrent lesions, and a good surgical outcome does not make long-term support unnecessary.

Severe sudden pelvic pain, fainting, fever, persistent vomiting or pain and bleeding when pregnancy is possible require prompt medical assessment. Cyclical chest pain or breathlessness also needs medical attention, particularly if acute. A familiar endometriosis label should never delay investigation of a new emergency.

What remains after an operation?

This is where expectations matter. Removing lesions addresses visible disease, sometimes very effectively. It does not necessarily reverse the conditions that sustain pain or prevent recurrence. I would discuss follow-up with the treating gynaecologist, then look for persisting contributors: sleep disruption, loss of strength and confidence, pelvic floor dysfunction, breathing changes during pain, iron deficiency if bleeding has been heavy, and bowel or bladder problems. These are legitimate treatment targets, although improving them should not be described as curing endometriosis or correcting a proven underlying metabolic cause.

A stronger clinical question

Endometriosis may explain a central part of the problem without explaining every symptom on its own. Visible lesions are one expression of a complex condition, but it would overstate present knowledge to call them merely the end stage of an established metabolic or functional disorder. Its origins remain uncertain. The IRSF makes space for the disease, the person’s response to it and the practical opportunities to improve function before and after surgery. The guiding question remains: Why has this particular person developed these particular symptoms at this particular time?

Clinical Disclaimer

This article is for education and does not replace individual medical assessment. Persistent or disruptive pelvic symptoms merit review; sudden severe pain, collapse, fever or possible pregnancy with pain or bleeding require urgent assessment.

References

NICE. New technologies for endometriosis diagnosis in primary care; draft early use guidance, July 2026. https://www.nice.org.uk/news/articles/new-technologies-for-endometriosis-diagnosis-in-primary-care

The Doctors Laboratory. Ziwig Endotest. https://www.tdlpathology.com/specialties/genetics/ziwig-endotest/

Bendifallah S et al. Validation of a saliva micro-RNA signature for endometriosis. NEJM Evidence. 2025. https://pubmed.ncbi.nlm.nih.gov/41147827/

Endometriosis UK. What is endometriosis? https://www.endometriosis-uk.org/what-is-endometriosis

NICE. Endometriosis: diagnosis and management. NG73, updated November 2024. https://www.nice.org.uk/guidance/ng73

European Society of Human Reproduction and Embryology. Endometriosis guideline, 2022. https://www.eshre.eu/guideline/endometriosis

World Health Organization. Endometriosis fact sheet. https://www.who.int/news-room/fact-sheets/detail/endometriosis