Jordania was 20 years old when she was told she had severe endometriosis. That day, in 2007, the doctor said to her: "we don't know where it comes from, we don't know how to cure it. You'll be in pain your whole life. If you want children, you'll have to go through ART if you don't succeed after a year. And don't complain, you don't have cancer". Then he left with a big smile.
Eighteen years later, Jordania's story, shared in episode 2 of the podcast "I thought I was the only one", resonates with millions of women. Because it says something profoundly violent: when pain doesn't kill us, it's not legitimate.
Yet endometriosis affects more than 190 million women worldwide. The average delay before diagnosis is seven to nine years. Seven to nine years of medical wandering, debilitating pain, and consultations where we're told that "it's normal to be in pain during your period".
In this article we explore how this suffering has been ignored, what current data says, and above all, what solutions exist.
"It's all in your head", "take the pill, you'll feel better", "take an anti-inflammatory"
Endometriosis is not a new disease. It has been documented in medical research for over a hundred years. But for a long time, intense menstrual pain has been trivialized, attributed to what was called "female hysteria" or simply to women's "nature". This normalization of painful periods, rooted in a patriarchal view of women's bodies, led to systemic invisibilization of the disease.
The problem doesn't just come from a lack of knowledge. It comes from a system that has historically given less credibility to women's words when they speak about their pain. An international study published in 2021 in The Journal of Pain showed that for equal pain, women's pain is systematically underestimated compared to men's. It is more often psychologized, minimized, attributed to stress or emotions. When you add to this the chronic underfunding of endometriosis research, we understand why it took so long for this disease to finally be recognized for what it is: a complex neuro-inflammatory disorder that profoundly affects the quality of life of those affected.
The good news is that this system is finally beginning to be challenged. But there's still a long way to go.
190 million women affected worldwide
According to the Saunders and Horne study published in 2025 in Biology of Reproduction, more than 190 million women, and people assigned female at birth, are affected worldwide. Yet the average delay to diagnosis remains seven to nine years after the first symptoms. Between 30 and 50% of patients experience fertility problems. In France and Belgium, this represents approximately one woman in ten of reproductive age.
Concretely in the field, this means on average five to seven doctors consulted before finally getting a name for their suffering. It means years of hearing that "it's normal", that "all women are in pain", that "it's psychological".
In the podcast episode, Jordania recounts the night she woke up with pain so intense that she fainted. In the emergency room, after an ultrasound, she was told: "ma'am, you're constipated, that's all. Go home". A few months later, during a particularly brutal endovaginal ultrasound, she told the doctor that the examination hurt: "I was telling him it hurts and he said no it doesn't!". This invalidation of pain, this refusal to listen to what the patient's body is saying, is what we call medical gaslighting. And it doesn't affect all women in the same way.
According to an article published in the British Medical Journal in 2022 by Abrahams and colleagues, Black women, for example, are largely underdiagnosed for endometriosis in the United Kingdom. They are two to three times more likely to have uterine fibroids than white women, but their pain is even more often minimized. A study published in 2016 documented racial biases in pain assessment: some healthcare professionals still believe, completely erroneously, that Black people feel less pain than white people. These biases have concrete and dramatic consequences on access to care.
The other major problem is that pain communication itself is complex. The 1 to 10 scale, commonly used in consultations, is insufficient to describe endometriosis. Another British study published in 2021 in Frontiers in Global Women's Health shows that women use metaphors to make their suffering understood: "like stab wounds", "like knitting needles being planted in my belly", "like a vise squeezing the entire abdomen". But not all doctors understand these expressions, some don't even recognize them as indicative of endometriosis. There's a profound gap between what patients experience and what the medical system is capable of hearing.
This medical wandering has massive consequences. Chronic pain that socially isolates. And gradually the feeling sets in that life is passing before your eyes while you're bedridden. Anxiety, depression, job loss, relationship breakups. Endometriosis doesn't kill, that's true. But it amputates years of life.
From individual to systemic: levers for action exist
Faced with this reality, it's essential not to remain in the bleak observation. Solutions exist, at different levels. They don't solve everything, but they allow us to regain power over our health and our life.
What I can do now
The first thing is to learn to document your pain differently than with a score from 1 to 10. Indeed, a 2021 study reminds us that this numerical scale, used alone, is insufficient to communicate the experience of endometriosis-related pain. It's therefore preferable to keep a journal where you note not only the intensity, but also the precise location, the type of sensation (burning, cramping, stabbing), the moment in the cycle when it occurs, and especially its impact on your daily life. Can I work? Walk? Sleep? This information is valuable for consultations.
Next, it's important to prepare your medical appointments as well as possible. List your symptoms, your questions, your concerns. Don't hesitate to use precise metaphors to describe your pain. And above all, allow yourself to consult several doctors if the first minimizes your suffering. This isn't being stubborn, it's self-advocacy or the ability to defend your own rights and needs as a patient! Being listened to by your healthcare professional is a right.
For everyday pain management, complementary approaches can help: pelvic physiotherapy, acupuncture, transcutaneous electrical nerve stimulation. Diet also plays a role in controlling inflammation: reducing refined sugars and ultra-processed foods can improve symptoms in some women. Approaches like cognitive behavioral therapy or mindfulness show encouraging results for managing chronic pain and the anxiety that accompanies it.
What's changing structurally
At the systemic level, things are moving... slowly, but they're moving. Scientific research has seen major advances in recent years. Endometriosis is now understood as a multisystemic neuro-inflammatory disorder, and no longer just as a "gynecological disease". This new understanding opens therapeutic avenues beyond conventional hormonal treatments: targeted anti-inflammatories, pain therapies, multidisciplinary approaches.
Imaging techniques have improved. MRI and specialized ultrasound now allow diagnosis of ovarian and deep forms of endometriosis without systematically resorting to surgery. Research is ongoing on non-invasive biomarkers, particularly salivary and blood tests that could revolutionize diagnosis.
On the public policy side, several countries have launched specific strategies. France implemented a National Strategy to Combat Endometriosis in 2022. In the United Kingdom, the Women's Health Strategy and the Race Equality Taskforce of the Royal College of Obstetricians and Gynaecologists are working to reduce inequalities in access to care. Scotland has even integrated into its Women's Health Plan 2021-2024 specific measures to combat racial discrimination in gynecological care.
But there's still an enormous amount to do. Training healthcare professionals on gender and racial biases must become mandatory. Gynecology waiting times, which exploded after the Covid-19 pandemic, must be reduced. Access to specialized care must be financially accessible to all. And above all, we need to develop truly multidisciplinary approaches that bring together gynecologists, pain specialists, psychologists, nutritionists, and physiotherapists. Because endometriosis is a complex disease that requires comprehensive care.
Join the movement: to never be alone again, because together we are stronger!
Community is not a luxury, it's a therapeutic necessity. If you've made it this far, it's perhaps because you're looking for answers. Or because you recognize your story in Jordania's, who sums up what she experienced in one terrible sentence: "they pose me a problem, they offer me no solution, no help, no support. And the only injunction is to try to reproduce quickly enough".
The small things to do
- Start documenting your pain for the next medical consultation.
- Create a symptom journal, on paper or via an app, and note what really matters: where it hurts, what type of pain, at what point in your cycle, and especially how it affects your daily life. On the Fâmme website, you can download a list to take with you to your doctor.
- Find reliable resources from associations like Toi Mon Endo or Endosens in Belgium or EndoFrance, Info-Endométriose in France.
- Read the clinical best practice guidelines (in English) from ESHRE, published in 2022, which are also a wealth of information for understanding what quality care should be.
- If you haven't already, listen to Jordania's full testimony in episode 2 of season 1 of the podcast I thought I was the only one. Her journey is both difficult and hopeful. It says something essential: we can go through this violence and continue to fight for ourselves and for others.
Endometriosis isolates us. It makes us believe we're alone when we are millions, that we're exaggerating or that we should be able to "manage" when we carry very real suffering that deserves recognition and appropriate care.
Share this article with someone who needs it. Come testify if you wish, your story and your voice matter.
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This article was written with scientific support from the following studies: Saunders & Horne (2025, Biology of Reproduction), Bullo & Weckesser (2021, Frontiers in Global Women's Health), Bougie O et al. (2019 BJOG), Abrahams et al. (2022, BMJ), Becker et al. (2022, ESHRE Guidelines), Bendifallah S et al. (2023, NEJM Evidence), Hoffman KM et al. (2016, Proceedings of the National Academy of Sciences), Zhang L et al. (2021, The Journal of Pain) and Jordania's testimony in episode 2 of "I thought I was the only one".
