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Endometriosis

Endometriosis develops when tissue similar to the lining of the uterus settles elsewhere in the belly, around the organs. With each cycle, this tissue reacts, bleeds and inflames the areas where it has taken hold, which can cause pain far stronger than what those around usually associate with periods.

The condition moves in phases. Some days go by with no real discomfort, others pin the person to bed or make concentration impossible. On top of this pain there is often a tiredness built up over years. Understanding this irregular rhythm avoids having to justify oneself with each episode.

The hot water bottle pressed against the belly is, for many people affected by endometriosis, an everyday object more than a comfort remedy. It goes along with a dull pain that is not limited to period days and can come up at work, in class or in the middle of the night.

This pain was long played down, put down to slightly difficult periods. It is nonetheless very real and sometimes disabling. Being able to set out the context just once, without having to convince every new person that the pain exists, frees up precious energy for the rest.

Far more than painful periods

Reducing endometriosis to periods misses the essential point. The pain can arise at any moment in the cycle and affect the back, the belly, the legs. Added to this are less visible realities:

  • a lasting tiredness, with no link to the previous night's rest;
  • pain during ordinary actions such as sitting for a long time;
  • an often long path before the condition is recognised;
  • sometimes difficulty conceiving a child.

What helps in practice

Accommodation counts more than compassion. Being able to adjust one's hours on a hard day, to work from home, to stand up and move during a meeting, changes everything. In studies, a PAP (a school support plan, in France) makes it possible to adjust exams and justify absences. At work, the RQTH (official recognition as a worker with a disability, in France) requested from the MDPH (the French departmental disability office) opens up concrete rights, and the simple fact that the team knows in advance avoids having to justify oneself with each episode.

Key figures

Endometriosis in a few figures

  • ~ 6.5 millionwomen in the US are affected, about 11% of women.Source: Office on Women's Health.
  • ~ 1.5 millionwomen live with endometriosis in the UK.Source: Endometriosis UK.
  • ~ 190 millionwomen and girls are affected worldwide.Source: WHO.
  • ~ 1 in 10women of reproductive age is affected globally.Source: WHO.

Possible accommodations

Needs change from one day to the next, but a few accommodations help to get through the hard periods.

  • At school: a PAP (a school support plan, in France) that allows trips out, postponing a test on a hard day and catch-up after an absence.
  • At work: through the RQTH (official recognition as a worker with a disability, in France), flexible hours, working from home on painful days and the option to step away for a break.
  • In everyday life: the freedom to postpone without having to justify it, and people nearby who do not play down the pain.

Explanations based on your profile

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Endometriosis explained to a Child

0–12 years old

There's a very special lining that covers the inside of the belly of girls and women: it's like a little protective layer. Sometimes, this layer spreads where it shouldn't, a bit like wallpaper sticking to the wrong places in the house.

Every month, when the period comes, this tissue that's in the wrong place bleeds too. That makes little wounds and it becomes very painful, much more than a normal period.

The people who have this feel:

  • Very strong pain in the belly or back, especially during their period
  • Great tiredness, as if the body were very tired
  • Sometimes trouble doing everyday things

It's important: periods should never stop someone from going to school or playing. If they do, it's good to tell a trusted adult.

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