Fighting endometriosis: ‘I don’t know what it means to be free from pain’

·13-min read

Widespread ignorance of endometriosis reflects an ingrained tendency to neglect women’s health and belittle their pain. Now France is vowing to change tack, rolling out a national strategy to combat a debilitating disease that affects one in every ten women, causing extreme pain and sometimes infertility.

The first time Jawaher had her period she found herself lying in a pool of blood, surrounded by menstrual clots, her body wracked by throbbing, relentless pain. “I’ve always had painful periods,” she recalls. “But for a first experience, it was really quite traumatising.”

Jawaher was soon put on the pill, which eased the agony. She began taking paracetamol every four hours, eight tablets a day. Like other girls, she was told she must learn to handle the strain – including by her gynaecologist, who said it was also perfectly normal that she experience pain during sex.

The discovery of Jawaher’s condition would come more than a decade later, after a severe bout of pain that left her unable to stand on her own two legs. When an MRI scan detected a large cyst on one of her ovaries, a doctor told her she suffered from endometriosis, a common and debilitating disease that causes chronic pain and, in some cases, infertility.

The diagnosis marked the start of a troubled and tortuous medical journey, wandering from one specialist to another, only to find out that “the so-called experts often had very little expertise” when it came to her disease.

Jawaher was put on a new hormonal treatment that stopped her cycle altogether. But after eight years of worsening side effects, she learned that the treatment put her at a heightened risk of developing a type of tumour known as meningioma. Since then, she has stopped the pill and cut back on medication, taking only enough to “make the pain just about bearable.”

“When I stopped medication I used to faint in the bathroom at work. I could barely lift my hands over the keyboard, such was the pain,” says the 42-year-old journalist. “I don’t know what it means, to be free of pain. The pain is constant. There are days when it’s so bad I want to jump out of the window.”

‘Not a women’s problem’

Like millions of other women affected by endometriosis, Jawahar is accustomed to suffering in silence, her daily life deeply impacted by a condition that is largely ignored by both specialists and the broader public. “We live in societies where it is still difficult to talk about diseases that are linked to periods, to our most intimate life,” she explains.

Endometriosis has long been trapped in a black hole of medical research and teaching, combining traditional neglect of women’s health with the social taboo associated with menstruation. The result has been a startling lack of attention for a debilitating condition that affects around one in ten women around the world and can impact every aspect of their lives.

The disease develops when tissue similar to the endometrium, which lines the inside of the uterus, grows outside of the womb, targeting the ovaries, the walls of the pelvis and sometimes organs as distant as the liver. The rogue tissue responds to women’s hormonal cycles, swelling and attempting to bleed at each new period, leading to inflammation and scarring.

Though sometimes asymptomatic, endometriosis commonly leads to painful periods and painful sex, as well as bowel and bladder irritation, nausea and chronic fatigue. Fertility is also frequently reduced. In turn, the disease’s debilitating effects can generate stress, anxiety and depression, placing a heavy burden on women’s personal and professional lives. To make matters worse, patients wait on average seven years for a diagnosis, and face an equally long and difficult journey towards treatment.

Such a delay is unacceptable, French President Emmanuel Macron said in a video message last week as he unveiled the contours of a national strategy to combat endometriosis. He stressed the need to “break the silence” on endometriosis, in order to “better understand the disease and its causes and find therapeutic treatments.”

“It is not a women’s problem. It is a societal problem,” Macron said of an illness that affects some 2.5 million women in France, many of whom are “exhausted, wearied by a pain that can lead to fainting.”

The French president, whose plan was based on a report by gynaecologist and EU lawmaker Chrysoula Zacharopoulou, said the national strategy would aim to foster research and raise awareness of the disease, improve the training of medical workers, speed up and facilitate diagnosis, and guarantee comprehensive care across France. His announcements noticeably lacked a timetable and detail about funding. Still, they were broadly welcomed by patients’ associations, vindicating decades of lobbying for recognition.

“It’s the first time we've heard a president talk about endometriosis and announce an action plan; in that respect, it’s already a victory,” says Yasmine Candau, head of the advocacy group EndoFrance, for whom Macron’s words finally signal “awareness of the problem and a form of recognition for those who suffer.”

“It was high time too,” she adds. “This is hardly a new disease. Now we’re impatient to find out how the plan will be enacted and with what kind of budget.”

Among the priorities outlined by Macron, Candau singled out medical training for special importance. She said it was imperative that doctors be trained to detect early signs of endometriosis, stressing that “many simply don’t know how to look”. She also slammed the recurrent habit of minimising a condition that is described in medical terms as “benign” (ie. not lethal).

“For too long we have trivialised the suffering of women during their periods, as if the old Biblical adage, ‘In pain you shall give birth’, was normal,” she says. “Endometriosis constitutes a real disability. We’re talking about a debilitating pain that keeps girls and women away from school and work, that is resistant to basic pain-killers, that can cause urinary and digestive problems, and sometimes lead to respiratory failures, such as pneumothorax. Out of every 10 women affected, between 3 and 4 will experience fertility problems too.”

Low priority

Candau highlighted the importance of carrying out research on an illness whose causes remain a mystery. As things stand, treatments can ease the pain and stem the disease’s proliferation, but they cannot cure it.

“There is currently no dedicated budget in France,” she says. “Our charity is doing its part to help fund research through donations; it’s absurd to think that the patients are financing research with their own resources.”

Whether in France or abroad, women’s health is still not a research priority, says Dr Marina Kvaskoff, an epidemiologist at the Inserm (National Institute of Health and Medical Research) in Paris, whose research focuses on endometriosis and cancer.

“Diseases that affect men get way more funds,” she explains. “It’s profoundly unjust.”

On top of the gross inequity, disregard for women’s reproductive health is also baffling from a scientific point of view, Rachel E. Gross writes in the New York Times.

“Dynamic, resilient and prone to reinvention, the uterus offers a window into some of biology’s greatest secrets: tissue regeneration, scarless wound healing and immune function,” she says. “One might well ask why more researchers have not focused on the uterus until recently.”

Kvaskoff has been tapped to coordinate a working group on "Research, Innovation, and Epidemiology" as part of France’s national strategy against endometriosis. She says it is terrific news that France has become only the second country after Australia to announce a comprehensive plan of action.

“We’ve known this disease for a very long time and yet it is only recently that diagnosis has caught up,” she says. While surgical procedures remain the gold standard for diagnosis around the world, improvements in MRI mapping – a significantly less invasive method – constitute a major step forward for patients. But a lot more needs to be done.

“Much remains unknown about women’s health, girls’ health, menstruation and reproductive health. The fight against endometriosis must set a precedent for greater efforts on women’s health in general. We need way more resources for women’s conditions like endometriosis,” Kvaskoff adds, pointing to a huge discrepancy in funding for research between the US and France.

In 2020, US federal funding for endometriosis research doubled from $13 million to $26 million. The move followed an impassioned plea by 32-year-old lawmaker Abby Finkenauer, who shared her own endometriosis journey in the House of Representatives.

“More and more women speak out, finding an echo on social media,” says Kvaskoff. “Their voices are chipping away at a longstanding taboo on menstruation and women’s intimate health that rendered their pain invisible.”

‘Your phonebook is just doctors’

Compared with her many other ailments, painful periods are a relatively minor concern for 34-year-old Sacha, who says she waited a staggering 16 years for her diagnosis. When it finally came, it was like “being hit by a tsunami."

Sacha suffers from a severe and evolving form of endometriosis, affecting numerous organs and her nervous system. Her diet and fitness routine are geared towards staving off the risk of inflammation. But when the recurrent crises strike, without warning, she can be bedridden for weeks.

When that happens, “my nerves are in such burning pain I simply cannot put a foot down,” she explains. And when the pain finally recedes, “each time it’s like learning to walk anew.”

Sacha says the traditional association of endometriosis with menstrual pain and fertility problems sends out a strong and important message, but one that can sometimes conceal other symptoms and delay diagnosis. The increasing specialisation of doctors also means that few are able to make the link between the disease’s many different manifestations.

“Symptoms are extremely complex and varied, ranging from digestive problems and malfunction of the bladder to painful intercourse and inflammation of the nerves, which can make it hard to walk,” she says. “When you have all of this, who do you go see? Which doctor can possibly treat all these symptoms? You end up going to gynaecologists, pain specialists, osteopaths, physiotherapists, sophrologists, etc. Your life is about going to the doctor. Even your phonebook is just doctors.”

In Sacha’s case, the wealth of experts offered by the French capital proved unable to put a name on the disease that was tormenting her. They included a battery of gynaecologists, gastroenterologists and radiologists, none of whom had received adequate training to detect the scars caused by endometriosis.

“It took me years to figure out what was wrong,” she says. “In the end, the answer came not so much from the doctors as through my own research; by reading books on the subject and the stories shared by patients, including on social media.”

To hear the French president talk about her disease was, in itself, a form of recognition for Sacha.

“I can’t say I was popping champagne bottles but, yes, to hear a president say the word ‘endometriosis’, it does mean a lot,” she says. “Because it’s such a struggle all the time, and a lonely one too (...). Like when you drag yourself to work, on morphine and striving to smile, just to prove that you can do the job like anyone else.”

A professional handicap

Sacha says her colleagues are broadly understanding and supportive, but there is only so far she can go in sharing her experiences of sickness and pain. “People understand the flu, colds or gastroentiritis; they can’t understand an ultra-complex chronic disease in which several organs are affected and the whole system is dysfunctional,” she explains.

Four in every five women affected by endometriosis are reluctant to take days off work, even when in severe pain, according to a study by Alice Romerio, a postdoctoral researcher who specialises in the disease’s impact on women’s professional lives. While some feel illegitimate in asking for time off, others simply cannot afford to, resorting to dissimulation strategies to conceal their pain.

“In addition to the discomfort caused by painful and abundant periods, women with endometriosis typically suffer from chronic back and pelvic pains, as well as bowel problems that require frequent, long and embarrassing toilet breaks,” Romerio explains. “These are a particular handicap in professions that tend to employ a lot of women, like teaching, services or care work, where you can’t just stop during a crisis.”

For some, the spread of remote work during the pandemic has offered a measure of respite, allowing them to hold a hot water bottle against their stomach, wear loose tracksuit bottoms or lie down when needed. But working from home is not always an option and women with endometriosis are still largely dependent on the understanding and goodwill of managers and company doctors.

During his announcement last week, Macron called for the development of an “endometriosis reflex” at all levels, including in the workplace. His national strategy advocates for an interdisciplinary approach, involving the labour ministry as well as the departments of health, youth and education. Crucially, however, it stops short of meeting a key demand voiced by advocacy groups: to give endometriosis full ALD status, an acronym that refers to the major and long-term illnesses – Affections de longue durée – for which public health insurance covers all costs.

“When you add up the countless scans, specialist appointments and surgical procedures, endometriosis is both exhausting and ruinously expensive for patients,” says Romerio. “As things stand, the state covers part of the cost, following case-by-case examinations that require endless patience and paperwork.”

‘We need everyone on board’

While the government appears divided on the matter, France’s National Assembly weighed in on the debate just two days after Macron’s announcements, passing a non-binding resolution in favour of ALD status. Tabled by left-wing lawmaker Clémentine Autin, the resolution won the unanimous support of lawmakers from across the board.

“From left to right, there is a broad consensus on the need to act on behalf of people suffering from endometriosis – and we can only rejoice at this,” said EndoFrance’s Candau, though cautioning that the implementation of ALD status would be a lengthy process. “In the meantime, we need to address existing territorial inequalities in the treatment of patients across France.”

As the long wait for adequate treatment drags on, Sacha and Jawaher have developed their own strategies to cope with the relentless pain, through tailored nutrition, osteopathy, yoga and meditation.

“The more I talk about my condition, the more I realise there are plenty of other gynaecological conditions that also cause crippling pain,” says Jawaher. “We need a broader debate about the suffering of women – and we need to listen to their pain, without judging or comparing.”

On top of her painful periods, Jawaher suffers from acute bouts of sciatica caused by large herniated discs, which send out flashes of pain throughout her body. The condition may be linked to her endometriosis, or it may not, such is the enduring riddle surrounding the disease.

Solving the enigma, and providing adequate care, will require huge investment and a change of approach, says Sacha, calling for a “holistic” management of endometriosis that “encompasses the entire body”.

“We need the expertise and input of sexologists, osteopaths, physiotherapists, gastroenterologists, urologists, neurologists, and others too. We need everyone on board,” she says. “Endometriosis should be more than just an option at university,” she adds, referring to the recent launch of France’s first one-year undergraduate course focused on endometriosis. “It should be an entire field of specialisation.”

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