SED Gastroparésie N’Cie Non-profit association

Understanding endometriosis

A common condition that has long been underestimated: tissue similar to the lining of the womb grows outside it and, for many people, causes severe pain.

What is it? Symptoms Diagnosis Care Rights And EDS?

What is endometriosis?

Endometriosis is the presence, outside the womb, of tissue similar to the endometrium, the lining of the inside of the womb. Like the endometrium, this tissue responds to the hormones of the menstrual cycle, which can cause inflammation, pain and sometimes adhesions between organs.

Lesions can be found on the ovaries, the peritoneum or the ligaments of the uterus, and sometimes on the bowel or bladder. More rarely, they affect other organs such as the diaphragm or the lungs. It affects about one in ten women of childbearing age. When this tissue grows into the muscle of the uterus, it is called adenomyosis.

Very variable symptoms

Some people have intense pain, others very few symptoms. How severe the pain is does not necessarily reflect how extensive the lesions are.

Painful periods

Pain during periods (dysmenorrhoea), often intense and possibly getting worse over time.

Pelvic pain

Pain in the lower abdomen, sometimes outside periods, which can become chronic.

Pain during sex

Pain during or after sex (dyspareunia), especially with deep penetration.

Digestive and urinary problems

Pain when passing stools or urine, bloating, bowel problems, urgent need to go to the toilet, often following the cycle.

Back and leg pain

Lower back pain or pain running down the legs, sometimes similar to sciatica, especially during periods.

Fatigue

Severe fatigue, linked to pain, inflammation and the impact of the condition on sleep.

Difficulty conceiving

According to Inserm (the French national health research institute), 30 to 40% of women with endometriosis experience infertility.

Mood and sleep

Chronic pain and years without a diagnosis weigh on mental health: anxiety, low mood and sleep problems are common. They are part of the disease and deserve care.

Good to know: these symptoms can have other causes. Only a healthcare professional can make the diagnosis.

A diagnosis that still often comes late

Diagnosis starts with a detailed discussion of symptoms and a clinical examination. First, a pelvic ultrasound is carried out, followed if needed by a pelvic MRI. For younger patients, MRI may be preferred. These tests are more reliable when performed by a radiologist or sonographer experienced in endometriosis.

If imaging is normal but pain persists despite treatment, a laparoscopy (a procedure under anaesthesia) may be discussed. In some complex cases, a saliva test (Endotest) may also be offered, within a framework set by the French National Authority for Health (HAS). It still takes about 7 years on average to get a diagnosis: talking about it early and describing your pain precisely helps shorten this.

Treatments

Endometriosis cannot be permanently cured, but several approaches relieve symptoms. They are decided with the gynaecologist, according to symptoms and life plans.

Hormonal treatments

As a first-line option, they aim to stop periods to slow down the lesions and reduce pain. Most of them are also contraceptive.

Pain management

Painkillers, anti-inflammatories and, if needed, a specialist chronic pain consultation. If you have vascular EDS or digestive problems, ask your doctor first.

Surgery

It may be offered by a specialist team if treatments fail or if certain organs are affected.

Fertility

If you wish to become pregnant, assisted reproduction may be offered depending on the situation.

Holistic support

Pelvic physiotherapy, adapted physical activity, psychological support: these aids improve everyday life.

Common myths

  • “Pregnancy cures endometriosis”: false. Symptoms may ease during pregnancy, but it is not a treatment and should never be advised as one.
  • "It’s for life": partly false. The disease depends on the hormones of the cycle. After menopause, symptoms generally ease.
  • “If the scan is normal, it’s nothing”: false. Lesions can be missed on imaging, especially if it is not done by a specialist.
Progestogens and meningioma: some progestogens, used in particular for endometriosis, increase the risk of meningioma (a brain tumour that is usually not cancerous). The French medicines agency (ANSM) recommends favouring first-line treatments without this extra risk. For the medicines concerned, a monitoring MRI may be prescribed and, after one year of treatment, an annual certificate co-signed with the doctor is required at the pharmacy. Learn more on the ANSM website ↗
Important: all care is individual. Do not stop or change a treatment without talking to your doctor.

Endometriosis and your rights

Endometriosis can be an invisible disability: pain, fatigue and urgent toilet needs sometimes limit work, studies or going out. In France, support schemes exist to help you.

  • Long-term condition status (ALD “hors liste”): endometriosis is not on the French list of long-term conditions, but 100% coverage of the French Health Insurance rate (excluding excess fees) is still possible for progressive or disabling forms requiring more than 6 months of costly care. Your GP makes the application, detailing the care plan.
  • MDPH and RQTH: if the disease limits your daily or working life, you can apply to the MDPH (French disability office), for example to obtain recognised disabled worker status (RQTH).
  • Work and studies: occupational health, the disability officer or your school’s health service can offer adjustments (hours, workstation, remote work, exams).
  • “Urgent toilet” card: created by Justice Endométriose, it helps you ask for priority access to toilets in public places. Discover the card (in French) ↗

All our rights and procedures guides

EDS and gynaecological pain

In people with Ehlers-Danlos syndrome, especially hypermobile EDS, gynaecological problems are often reported: heavy or painful periods, pelvic pain.

A direct link between EDS and endometriosis has not been established to date. The two can coexist, and gynaecological pain in a person with EDS deserves to be investigated just as it would be for anyone else.

Often associated

These conditions and disorders often go together. Each one has its own page.

Ehlers-Danlos syndrome

A group of inherited connective tissue disorders.

Intestinal dysmotility

The contractions of the bowel are slowed down or disorganised.

POTS and dysautonomia

The heart speeds up sharply when standing, with faintness and severe fatigue.
Our official partner

An association dedicated to endometriosis

Logo of the Justice Endométriose association

Justice Endométriose

  • A French association dedicated to endometriosis and patients’ rights
  • Founder of the 1st national network of associations fighting endometriosis
  • A social and solidarity economy organisation (ESS)
Discover the association

Sources and resources

This page is based on recognised French medical sources.

Haute Autorité de Santé (HAS, French National Authority for Health) The Endotest saliva test in complex diagnostic situations (in French) ↗ Inserm Information file on endometriosis ↗ Haute Autorité de Santé (HAS, French National Authority for Health) Guidelines on the management of endometriosis ↗ Justice Endométriose · our partner Association dedicated to endometriosis and patients’ rights: free social and legal support (in French) ↗ EndoFrance French association fighting endometriosis ↗ ENDOmind Patient association for endometriosis (in French) ↗
Medical information

The content of this page is provided for information only. It does not replace a consultation, a diagnosis or personalised advice from a healthcare professional.

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