5 things to know about endometriosis

Because this gynecological disease affects more than 10% of women in France, and its impact on the lives of sick people is sometimes enormous, here are 5 points on endometriosis to help you understand it, detect its symptoms and give you some ways to live it better.

This article was written with the help and testimony of Marie-Rose Galès , expert patient with endometriosis, and author of several books on the subject, the latest of which was: EndometriOSE ask your questions.

1. At the origin of endometriosis; the presence of endometrium-like - but not identical - tissue outside the uterus.

The sinews of war are tissues similar - but not identical - to the endometrium, present on different organs outside the uterus (when they should not be there), which behave like endometrium and may (or may not) bleed under the influence of hormones. The major problem is that these tissues similar to the endometrium can cause cysts, adhesions and lesions on the organs they affect, which creates inflammation, which causes pain. You will find here the complete definition of Inserm .

There are several types of endometriosis:

• superficial endometriosis: which corresponds to the presence of so-called "ectopic" endometrium (the famous tissue outside its natural site) on the surface of the peritoneum (membrane that covers the abdominal cavity, either locally or throughout the space abdomen and pelvis).

• Ovarian endometriosis : Ovarian endometrioma is a cyst of the ovary characterized by brown liquid contents.

• deep pelvic endometriosis : corresponds to lesions that infiltrate more than 5 mm below the surface of the peritoneum (at the level of the ovaries, vagina, uterosacral ligaments, intestine, rectum, colon, bladder or ureters in particular).

2. How to detect endometriosis?

Whether it is intermittent or permanent, targeted or diffuse, the very first symptom of endometriosis that should alert remains very strong pain , but there are also asymptomatic forms.

Among the pains identified:

• menstrual pain and bleeding : be careful though, it is not because you have painful periods that you have endometriosis. We are talking here about increasingly strong pain, more and more present and that conventional analgesics do not relieve.

• pelvic pain (in the pelvis) and lumbar pain

• neuropathic pain (related to nerve irritation caused by endometriosis)

• pain during intercourse

Finally, digestive / urinary disorders, chronic fatigue and infertility are also among the many symptoms frequently encountered.

Nevertheless, it is quite possible to develop endometriosis without any of these pains having attracted our attention, we then speak of an asymptomatic form . In this case, it is often at the time of an ultrasound or when one encounters difficulties in having a child that one realizes that one has endometriosis.

Namely: There is no link between the intensity of the pain and the type of endometriosis. Even superficial endometriosis can hurt a lot depending on its location and the presence of nerves.

3. Endometriosis does not necessarily rhyme with infertility

Unfortunately, 30 to 40% of women with endometriosis face an infertility problem, but this is no longer inevitable. Medically assisted procreation - stimulation of ovulation, artificial insemination, in vitro fertilization (IVF) - allow many women to access motherhood. Psychological support can prove to be of great support during this stage, which is not always easy for couples to go through.

At the same time, no less than 60 to 70% of women with endometriosis manage to get pregnant naturally: there is (more than) hope.

4. Why is endometriosis so difficult to diagnose?

The delay in diagnosis is now estimated at 10 years on average to make a diagnosis of endometriosis, which is obviously extremely long. Why such a delay?

• The lack of training of doctors : To the multiplicity of symptoms can be added the lack of training of doctors, gynecologists and sonographers in the specificity of this pathology . Indeed, for endometriosis cells to be detected by sonographers, they still need to be trained in their specificity. In many cases, the lack of training in the specifics of this pathology can lead doctors to miss the correct diagnosis for a long time. Remember that endometriosis has only been on the medical program since 2020 (!?!?)

• Some myths still die hard : Marie-Rose Galès also points out, based on her experience, that some myths around menstrual pain persist; making us in particular consider these as inherent to our condition as women (therefore normal!) and once again, delaying the correct diagnosis…

• Do not hesitate to seek a second opinion : faced with the difficulty of obtaining a good diagnosis, it may be more than desirable to seek a second opinion and to turn to specialists in the subject if we do not find a satisfactory answer to our problems. The deuxeavis.fr website has been of great help to many patients.

• A long-awaited diagnosis... but not easier to accept : the occurrence of the diagnosis after years of wandering can be synonymous with relief ( how many women mention the relief of not being crazy in their testimony ) but the acceptance of the disease doesn't necessarily make it any easier. Ambivalent feelings of relief and condemnation may be intertwined at the time of diagnosis.

5. Can endometriosis be cured?

Endometriosis cannot be cured, but its symptoms can be reduced with personalized, global care and an active approach, in particular via:

Improving lifestyle : diet, relaxation, yoga, acupuncture, osteopathy, physiotherapy: the combination of all these approaches allows some people with endometriosis to find a balance and reduce their symptoms. More and more women are also using CBD-based products to soothe their pain and anxiety, essential oils, or even special hot water bottles for the lower abdomen area: a whole non-drug arsenal that allows you to manage your crises at best. You will find on the Gapianne e-shop boxes dedicated to menstrual pain , different CBD oils , herbal teas ...

Hormonal treatments, when the first adjustments are no longer sufficient, make it possible to suppress the rules, responsible for the bleeding. However, this method is not suitable for all cases because it only limits 3 of the symptoms : menstrual pain (by blocking bleeding), uterine contractions and increased cyst size. So when you have urinary or digestive problems or very strong neuropathic pain, you can be disappointed with this treatment. The artificial menopause cure - which is not a first-line treatment - suppresses ovulation directly at the pituitary level. The FDA is studying its potential withdrawal.

Surgery : very delicate, it requires very specialized expertise in endometriosis and is performed to a lesser extent.

By way of conclusion : Marie-Rose Galès recalls that there are as many forms of endometriosis as there are women concerned and that a holistic approach (but not necessarily only natural) as well as an active approach by the patient are essential. Indeed, very fine knowledge of one's own disease and its symptoms is crucial: one should not wait for a magic solution from a doctor, even an expert in the field. Developing one's knowledge on the subject, listening to one's body, multiplying and testing the different approaches , are all elements to best manage the sometimes very debilitating symptoms and to be an actor in its care .

Some reliable sources on endometriosis and testimonials:

- Endofrance

- Endoblum

- Inserm

- Testimonials from the blog Dans ma culotte

- @superendogirl : Marie-Rose Galès' account