Endometriosis affects about 190 million women worldwide, that is 10% of women of reproductive age. The average time to diagnosis is still 4 to 12 years depending on the country, and the burden is particularly heavy in women aged 20 to 29.
If pain, bleeding or other gynaecological symptoms persist, Noria Health Hub can arrange a full check-up or a second medical opinion in Brussels, with a report within 24 h, coordinate your care where needed across more than 40 medical pathways in 48 h, then, if your medical condition allows, arrange surgery within 7 days.
Endometriosis, a diagnostic delay that remains very long
Endometriosis affects about 10% of women of reproductive age according to the World Health Organization. The time between first symptoms and diagnosis is the most regularly measured datum of this disease, and it is remarkably constant.
| The source | The measured delay |
|---|---|
| World Health Organization, international synthesis | 4 to 12 years depending on the country |
| Federal Health Care Knowledge Centre, Belgium | 6 to 10 years |
| French online cohort of several thousand participants | About 10 years, with no measurable improvement across generations |
| What the last line implies | The delay has not fallen despite 2 decades of awareness campaigns |
That delay has barely moved in 20 years, and that is what should raise concern. A delay that stays the same after 20 years of information campaigns is not a patient information problem.
Why endometriosis is hard to diagnose
Three documented mechanisms stack up, and none is a failure of will. First, menstrual pain is normalised, by those around the patient as much as by clinicians, which the qualitative literature documents consistently. Second, the symptoms overlap with irritable bowel syndrome and urinary disorders, which points towards other specialties. Third, and this is the technical point, clinical examination and ultrasound can be normal in superficial disease, which is the most common form.
Endometriosis, a normal scan does not rule out the disease
| What is looked for | What imaging detects |
|---|---|
| Ovarian endometrioma | Ultrasound and MRI both perform well, this is the best seen form |
| Deep endometriosis of the posterior compartment | Adequate detection by expert ultrasound and by MRI, with strong operator dependence |
| Superficial peritoneal endometriosis | Poorly detected or not detected at all by the 2 techniques |
| Practical consequence | A normal scan does not exclude endometriosis |
The last line of the table is the one most often forgotten: a normal scan does not exclude endometriosis. Many journeys stop at a normal ultrasound.
A major doctrinal change occurred in 2022. The reference European guideline stopped making laparoscopy the mandatory examination for making the diagnosis. The diagnosis can now be clinical and radiological, and treatment can begin without surgical proof. That is good news for the delay, provided the clinicians consulted know about the change.
Cervical cancer, screening whose benefit is well demonstrated
On this subject, unlike many others covered in our articles, the level of evidence is high and the result is clear-cut.
| What is compared | The result |
|---|---|
| Sensitivity of the HPV test for high-grade lesions | 89.9% |
| Sensitivity of conventional cytology, in the same populations | 62.5% |
| Invasive cervical cancers after HPV screening against cytology screening, pooled European randomised trials | Rate ratio of 0.60, that is 40% fewer invasive cancers |
| Screening participation with self-sampling offered to non-participants | Rate ratio of 2.33, more than double the participation |
These 4 lines come from randomised trials and from meta-analyses of randomised trials. It is the highest level of evidence available in screening.
Cervical screening, proven benefits, but also false positives and unnecessary treatment
We will never present a screening programme by its benefits alone, even when it is solidly demonstrated. Two figures need to be known.
First, about 50% of CIN2 lesions regress spontaneously in young women. Systematically treating CIN2 in a woman of 25 therefore amounts, in half of cases, to treating a lesion that would have gone away on its own.
Second, conisation is not a trivial procedure obstetrically. For an excised specimen 20 mm or more in height, the risk of preterm birth is multiplied by about 4.91. That risk rises with the depth of excision. It is a serious argument for surveillance in a young woman with no immediate pregnancy plan, and it is information every patient should have before consenting.
How long people wait
In France, the median wait for a gynaecologist appointment is 32 days. That figure measures access to a first consultation, not the time to diagnosis, which runs into years for endometriosis. The 2 measures do not describe the same problem and it would be dishonest to present them as equivalent.
What the studies do not allow us to claim
We will not claim that earlier diagnosis of endometriosis improves long-term prognosis, because no randomised trial has demonstrated it. What diagnosis does bring, in a documented way, is access to pain treatment, an end to the diagnostic wandering, and an informed decision about fertility. That is considerable, and it is not the same statement.
Nothing entitles us to write that a normal ultrasound is reassuring, because the most common form escapes it. You will not read here either that a positive HPV test means cancer, because the great majority of papillomavirus infections clear spontaneously.
In practice, if this concerns you
You set out your problem, your symptoms or your question. Reports, laboratory results and images already available can be studied before you arrive, so that the pathway is prepared. The point is not to run every test as a matter of course, but to select those that can genuinely help confirm a hypothesis, rule out a risk or guide the decision. The results are brought together and the next steps are organised. Follow-up is then coordinated.
Arrange my gynaecological work-up
Need medical advice quickly? For a concern that is not a matter for the emergency services, you can ask to speak to a doctor at any time through Noria Health Hub. This on-demand medical consultation is billed separately from the work-up pathway.
Further reading
The companion articles.
Cancer” rel=”noopener” target=”_blank”>https://noriahealth.com/blog/cancer-screening-what-the-trials-demonstrate/”>Cancer screening, what the trials demonstrate
Getting” rel=”noopener” target=”_blank”>https://noriahealth.com/blog/getting-diagnosed-abroad-what-it-solves/”>Getting diagnosed abroad, what it solves
Sources
World Health Organization, Endometriosis, fact sheet. https://www.who.int/news-room/fact-sheets/detail/endometriosis
Centre fédéral d’expertise des soins de santé, KCE, Endométriose, prise en charge en Belgique. https://kce.fgov.be/
Nnoaham KE et al., Impact of endometriosis on quality of life and work productivity, a multicentre study across ten countries, Fertility and Sterility, 2011. https://doi.org/10.1016/j.fertnstert.2011.05.090
ComPaRe Endométriose, cohorte e-santé participative, Assistance Publique Hôpitaux de Paris. https://compare.aphp.fr/
Becker CM et al., ESHRE guideline, endometriosis, Human Reproduction Open, 2022. https://doi.org/10.1093/hropen/hoac009
Nisenblat V et al., Imaging modalities for the non-invasive diagnosis of endometriosis, Cochrane Database of Systematic Reviews, 2016. https://doi.org/10.1002/14651858.CD009591.pub2
Cuschieri K, Ronco G et al., Accuracy of HPV testing versus cytology for detection of high-grade cervical lesions, pooled analysis, International Journal of Cancer.
Ronco G et al., Efficacy of HPV-based screening for prevention of invasive cervical cancer, follow-up of four European randomised controlled trials, The Lancet, 2014. https://doi.org/10.1016/S0140-6736(13)62218-7
Arbyn M et al., Detecting cervical precancer and reaching underscreened women by using HPV testing on self samples, updated meta-analyses, BMJ, 2018. https://doi.org/10.1136/bmj.k4823
Tainio K et al., Clinical course of untreated cervical intraepithelial neoplasia grade 2 under active surveillance, systematic review and meta-analysis, BMJ, 2018. https://doi.org/10.1136/bmj.k499
Kyrgiou M et al., Adverse obstetric outcomes after local treatment for cervical preinvasive and early invasive disease according to cone depth, systematic review and meta-analysis, BMJ, 2016. https://doi.org/10.1136/bmj.i3633
Direction de la recherche, des études, de l’évaluation et des statistiques, Enquête sur les délais d’attente pour un rendez-vous chez un médecin spécialiste, France. https://drees.solidarites-sante.gouv.fr/
World Health Organization, Endometriosis fact sheet, 2025. https://www.who.int/news-room/fact-sheets/detail/endometriosis
Wang Z et al., Global burden of endometriosis: incidence highest at 20–24 years and burden peaking at 25–29 years, 2025. https://pubmed.ncbi.nlm.nih.gov/41152781/