Whatever the health system, in whichever country worldwide, the delay between the first appearance of symptoms and the diagnosis of endometriosis is excessively long, between 6 and 10 years. This situation must change for all women who suffer from this chronic disease which has an impact on daily life and quality of life.

Why is the diagnosis of endometriosis so difficult ?

LUNA helps you understand why the diagnosis of endometriosis is so difficult.

There are several reasons why it takes so long to diagnose endometriosis:

– the physiopathology, or mechanisms explaining the occurrence of the disease, is poorly understood

– the heterogeneity of the disease, which presents as three phenotypes, in other words three different clinical aspects, sometimes associated in the same patient:

  • superficial endometriosis, when the implants remain superficial on the surface of the peritoneum (tissue that lines the entire abdominopelvic cavity) and/or the ovaries
  • ovarian endometriosis or endometriotic cysts (endometriomas), when as a result of successive bleeding every month the lesions create a cyst on the ovary

deep endometriosis when the lesions penetrate the abdominopelvic organs (bladder, ureter, intestine, vagina, …).

read also : whar is the endometriosis

These three types of lesions each contribute differently to the patient’s symptoms:

  • The frequent association with adenomyosis. Also called “endometriosis of the uterus”, adenomyosis occurs when endometrial cells penetrate the uterine muscle (myometrium). It leads to menorrhagia, i.e., heavy and long periods, and, like endometriosis, is responsible for pain and infertility.
  • Some endometrioses are totally asymptomatic, i.e., they don’t cause any pain. This is particularly the case when the ureter, the organ that carries urine from the kidney to the bladder, is affected.
  • Pain in endometriosis patients can take a wide variety of clinical forms: dysmenorrhoea, dyspareunia, chronic pelvic pain, digestive and/or urinary problems that flare up at the time of menstruation. Moreover, several types of pain may be associated in the same patient. There is therefore no “standard clinical picture” of endometriosis
  • Pain, while very common in endometriosis patients, is not necessarily synonymous with the disease. Just because a woman has abdominal-pelvic pain doesn’t necessarily mean that she has endometriosis. This means that patients can display the same symptoms without actually suffering from endometriosis. The difficulty for the practitioner is therefore to ensure that the painful symptoms are indeed related to endometriosis and not another condition, either gynaecological or due to chronic pain syndromes (irritable bowel syndrome, interstitial cystitis, fibromyalgia), which themselves may be associated with endometriosis.
  • Infertility, which is easy to recognise, is not systematic in women with endometriosis

What are the symptoms and factors of endometriosis?

LUNA shows you the main signs of endometriosis to look for during the questionnaire.

For a patient with painful symptoms, the main criteria to look for during the assessment, that point to endometriosis as a cause, are as follows:

  • A family history of endometriosis for the mother and/or sister(s).
  • An adolescence with particularly painful first periods: the need for oral contraception, not for contraceptive purposes, but to relieve adolescent patients; menstrual pain so intense that it leads to school absenteeism and/or the inability to practice sports.
  • Intense dysmenorrhoea (period pain), which cannot be relieved by conventional painkillers.
  • Pain during sexual intercourse (dyspareunia) which interferes with the sex life.
  • The existence of associated infertility in a painful context.
  • The existence of associated diseases (lupus, rheumatoid arthritis, dysthyroid, asthma, allergies, Crohn’s disease, etc.) because of immune disorders seen in women with endometriosis
  • A history of migraines, both in the adolescent and adult patient.
  • Urinary problems (haematuria (blood in the urine), difficulty urinating, burning during urination) or digestive problems (rectorrhagia (blood in the stools), transit problems, bloating, pain during defecation). These signs are more pronounced during the period surrounding menstruation.
  • Significant psychological impact caused by the pain, with chronic fatigue, anxiety and a feeling of discomfort and exhaustion.
  • a history of surgery for endometriosis
  • the recurrence and increase of symptoms during menstruation.
  • the fact that pain is significantly relieved by the prescription of a hormone treatment that blocks menstruation.

How is endometriosis diagnosed ?

LUNA helps you understand how to diagnose endometriosis, and explains why we are at a turning point in the diagnosis of this disease.

The ‘modern diagnosis’ of endometriosis is based on three steps.

Patients should be offered:

  • Firstly, a comprehensive interview (see paragraph above), to help identify patients at risk of endometriosis
  • Secondly, a gynaecological examination carried out by a practitioner familiar with the condition
  • Thirdly, an imaging assessment carried out by a specialist in endometriosis.

Recent years have seen considerable progress in gynaecological radiology (vaginal ultrasound, nuclear magnetic resonance imaging: MRI). It is now possible to diagnose ovarian cysts or endometriomas and deep lesions without the need for laparoscopy, which is a surgical procedure under general anaesthetic.

The most common radiological examination is a vaginal ultrasound. An MRI is only taken as a second option, either in the context of deep endometriosis to determine the exact location of the nodules, or to quantify the importance of associated adenomyosis and very often if surgery is being considered.

While in the past the diagnosis of endometriosis was surgical with the systematic performance of a laparoscopy, this is no longer the case today: a “modern diagnosis” must be exclusively clinico-radiological.

If there is any doubt about the diagnosis, particularly for superficial peritoneal lesions, which are difficult to visualise with imaging, the disappearance or clear regression of symptoms following the prescription of a hormonal treatment that blocks menstruation is an indication that the disease is present.

What are the consequences of delayed diagnosis ?

LUNA explains the consequences of a delayed diagnosis of endometriosisous.

The time it takes to diagnose endometriosis today is still far too long and has major consequences:

A delay in the introduction of suitable treatments, both to relieve the patient and optimise her fertility if she wants to conceive.

A risk of progression and the extension of lesions: this risk exists but is theoretical, as the disease is not considered very progressive. There is currently no evidence to enable the identification of clinical situations that present a real risk of progression.

A major impact on the patients’ quality of life on a personal, marital, professional and societal level. This is a key point. Due to the slow diagnosis, endometriosis patients suffer from chronic fatigue, physical and psychological exhaustion, combined with a feeling of incomprehension leading to marginalisation and isolation in a context of anxiety and discomfort.

LUNA helps you

LunaEndoScore is a diagnostic tool that, by calculating a risk score, identifies your probability of being affected by endometriosis from your responses to a questionnaire.

Intented use :

LunaEndoScore aims to help detect endometriosis by calculating a risk score that determines the probability of being affected by endometriosis from users’ responses to a questionnaire.

read also : the symptoms of endometriosis

Scientifically validated by Pr Charles Chapron

Head of Obstetrics II and Reproductive Medicine at Cochin Hospital in Paris