To Hell and Back

As Russian soldiers advanced on Yahidne in the first few days of March, Julia Vertyenko, 35, was huddled with her husband and daughter in the cellar of her parents’ house. A light bulb hung from the ceiling, the small window was open, and along the walls were homemade shelves full of canned fruit. Her father had taken the precaution of taking a few blankets down there against the cold. The noise of battle was coming ever closer: the attackers had to be in the village soon.

Now, standing in the village street in jeans and t-shirt one blisteringly hot day in June, her hair girlishly tied in a ponytail, she says that in the weeks that followed she often thought longingly of that storeroom in her father’s house. So bright and spacious, so tidy. She had been sitting there with her family for four hours when a Russian soldier yelled through the cellar window: “Everyone out. Or I’ll throw a grenade in the house.”

Her father Igor was the first to climb up the stairs. They made him stand against the wall of the house and he thought he was going to be shot. But the Russian soldiers just laughed, smashed his mobile phone, then made themselves comfortable and fried some eggs while the family stood beside them, frozen with fear. One of the intruders gave Julia’s young daughter, Masha, a mandarin. For one day the family lived downstairs in the cellar, the Russians upstairs in the house. Then the Vertyenkos were forced out onto the street and sent to the basement of the village school a few hundred metres away. They were told it was for their own safety, but it was an order. One of the soldiers gave Masha a farewell gift, chocolate this time. Then he said, “All the best.”

Four months later, Julia Vertyenko, a programmer in the nearby city of Chernihiv, is returning with her daughter to the backyard of the Yahidne school, and to the door that leads to the basement. In the village they call it the dungeon of death. The memories of those weeks in the basement still haunt the young mother’s dreams to this day. Unlike her husband, Serhij, a vet, she is on holiday and therefore not at work but at home, in the village. Masha’s online lessons have just ended. Ivan Podgul, the neighbour who holds the key to the basement, has come with her to the dungeon, which justice officials in Kyiv are treating as the scene of a war crime. Awkwardly he unlocks the green wooden door. Behind it, a narrow staircase leads down into the cold and dark.

They were kept in here for 26 days; other villagers speak of 28 days. Every day, every hour, they were joined by more and more people, driven here by the Russians, street by street, house by house: in the end there were 360 of them crammed into the corridor and the few basement rooms, 136 of them in the one larger room alone. Julia Vertyenko stops in front of the door, hesitating. Should she go down there again? Then she says firmly, “I don’t want it to become a museum inside my head. Am I going to walk past it every day, thinking about it and feeling afraid?”

Before 24 February, when the Russian army invaded Ukraine and Moscow’s troops advanced on the tiny village from the Belarusian border, all the local children attended this school and kindergarten on the edge of the forest. What happened there made headlines around the world. The United Nations, Ukrainian NGOs and the Prosecutor General in Kyiv are all determined to investigate crimes against humanity in Ukraine and bring the perpetrators to justice.

According to the latest list drawn up by the Prosecutor General’s office, Russian troops have committed 19,530 war crimes since their invasion of Ukraine. Yahidne is right at the top of the list. Nine suspects have been identified already, most of them soldiers from the autonomous Republic of Tuva in southern Siberia, near the Mongolian border. At a press conference held on 8 June, Prosecutor General Iryna Venediktova acknowledged that the perpetrators had probably returned to Russia and would have to be tried in absentia but added, “This is very important for us, for justice in Ukraine, for the victims and for their families.”

Julia Vertyenko agrees that the investigations are important, but adds, “They’re not everything, though. We also have to go on living here together. Not everyone has come to terms with what happened.” And so she does go down into the basement, Ivan Podgul holding his hand out to her just in case. Masha has skipped ahead already. At the foot of the stairs is a narrow corridor, a few old children’s chairs by the wall. To the left and right are five small rooms, more like sheds, really. It is dirty and dusty. Here and there a few old school desks with notebooks and old textbooks on them; on the floor, shovels, ropes, wooden planks. It stinks of mice and excrement. A blanket here, a sleeping bag there. The windows are shuttered, the air is stuffy. The basement has been left exactly as it was when the whole village was living in it: a dumping ground for old school furniture that had been cleared away but never thrown out, plus the residue from a coerced community facing life or death.

“We were among the first to be sent down here,” says Julia Vertyenko, heading straight for the corner in the far right of the largest room, where she sits down on a children’s chair. “This is where we squatted, there wasn’t room to move around.” She shows us how Masha used to sleep: on her mother’s lap, sometimes on her father’s, her little head on her mother’s shoulder and her legs squeezed in between her parents. Most of them had to sleep sitting up, she says; others standing, leaning against the wall.

She is speaking faster now and has switched to informal pronouns: “you know”, “do you see?”, “call me Julia”. It all has to come out, every last detail, it’s as if it is being sucked out of her. It goes on like this for hours, hours seated on the same children’s chair she sat on back then. Ivan Podgul, the keyholder and friend, crouches down beside her, adding, explaining. Only Masha does not speak a single word the whole time.

The Russians, Julia recalls, initially said they would be in the cellar for no more than five days, then they would all be let out. There was fighting going on outside, it was dangerous. But she thinks it was just much more convenient for them to gather all the Ukrainians in one place and guard them. Little by little, the basement filled up. On 13 March, her sister and niece were pushed into the room. There was rarely any food: “If the soldiers had some themselves, they would sometimes throw it across the room, as if they were feeding dogs.”

After the fourth day, she says, brushing her daughter’s hair out of her face, a few of the women were allowed out from time to time to fetch food from home. What the occupiers had left of it, at least. On a good day there might be a few potatoes each, cooked upstairs in the open, then shared out downstairs.

There was hardly any clean drinking water, even for the children. After a while, they all had diarrhoea and almost all the children had chickenpox. “You have to picture it, they all infected one another in this tight space, they were scratching themselves till they bled, many of them were running a fever.” Once, she recalls, pulling her daughter closer, they let her go home to fetch some tablets for Masha. “But they had long since been stolen.”

Podgul says the soldiers had made themselves at home in people’s houses. He calls them Buryats. Buryatia is another autonomous republic in Siberia. But whether they were from Buryatia or, as previous investigations have found, from Tuva, for Podgul they were all the same: “Even the guys guarding us were afraid of them. There was constant stress because the Buryats were even more brutal than the other Russians. Sometimes they shot each other.”

Every now and then Podgul was allowed out to go and feed his cow. Anyone who was let out of the basement had to tie a white ribbon round their arm and be back within twenty minutes exactly, Julia Vertyenko says: “They said anyone who didn’t come back would be hunted down and shot.” The door to freedom was always barricaded. “We begged to be allowed out to the latrine in the schoolyard. Downstairs there was one bucket per room, it stank to high heaven.” If the soldiers had not had too much alcohol, a few people would be allowed out. “Everything depended on their mood. Food, water, life, death.”

The buckets quickly overflowed and the air became unbearable. “At some point they started letting us go outside to the toilets at eight o’clock every morning. Anyone who was allowed upstairs for the few minutes they gave us had to step, roll or climb over dozens of people.” One man who had fled from Donetsk to Yahidne to stay with relatives looked up at the sky for too long on his way across the yard to the toilet. “They thought he was checking military coordinates. So they shot him.” After that, everyone just looked straight ahead. Julia demonstrates, staring straight ahead, motionless. “But everything was dangerous.” A boy with a tattoo of a Ukrainian trident: shot. A man found on the street: shot.

Julia says she thought everyone was going to die. She and Ivan Podgul both remember the atmosphere down there among the crammed-in people, the constant shrieking and crying, the six-week-old baby whimpering in the corner to their right, the rows, the despair. It was all burned into their memories, forever. On one occasion, the Russians tried to drag one of their neighbours outside. “She resisted the rape so loudly, yelled so wildly, that we could hear her from the basement. They sent her back down. Unharmed, I think.”

And then, says Julia Vertyenko, people started dying, one by one. Someone kept a list on a whitewashed wall in the smallest room. To the left of the door were the names of those who had been shot. To the right, the names of those who had died due to the lack of the most basic necessities: air, food, water, safety. According to Prosecutor General Iryna Venediktova at her press conference, ten people died in the school basement over the course of those four weeks, and sixteen were taken out and shot. “We were only allowed to carry the bodies up to a boiler room next to the school every few days,” says Ivan Podgul. “That’s how long they were left lying among us. Every now and then, some of them would be buried somewhere outside the school wall.”

“It sounds strange,” says Julia Vertyenko, “but sometimes I didn’t know where I would be safer: here in the middle of this starving crowd of people I knew? Or out in the open air, among armed Russians and under constant fire? In a perverse way, the basement was also a shelter.”

At some point, after an eternity that ended on the last day of March, a soldier came into the cellar. They were pulling out, he shouted. The Russians were still blowing up an ammunition depot in the pine forest behind the school, and it had been hellishly noisy for hours, as if the world was coming to an end. Then everything fell quiet. “We looked outside through a hole in the door. Then some brave person opened the door. Total silence. For a short time the only thing you could hear was the wind,” says Julia Vertyenko. Then you could hear the noise of battle again in the distance. The tanks of the occupiers were gone. The trenches they had built around the school were empty. It was only hours later that the first Ukrainian soldiers arrived in the village.

The inhabitants of Yahidne go on living with these images in their heads. The fear is slow to fade, say Julia Vertyenko, and later a kind of self-loathing was added to it. Almost four weeks without washing, almost four weeks in the same shoes, the same underwear, emaciated, covered in lice. “The first time I took my clothes off, my skin came off with them.” Everyone, she says, had scabies afterwards, or eczema.

Now, a few months on, everything seems peaceful. Everything is green and lush; a woman goes by on a bicycle. As if this were a normal village. Along the dusty roads there is the smell of elderflower. The cherries are on the verge of ripeness, pears and walnuts are still small and green, cornflowers and lupins are blooming in the gardens. A solitary rooster struts across the street. Nearly all the houses are damaged: some just have a hole in their roof, of others only the chimney remains.

The deputy mayor, Mykola Rudenok, has heard there is a journalist in the village and rushes over. He tells us that seventeen villages have been merged as part of a territorial reform, but that there is no money anywhere, the war has left almost all the inhabitants without employment, and there is a lot to do. Yahidne is now famous, for tragic reasons, but the other villages have been partially destroyed by the Russians too. “We didn’t know that more than 300 people were being held in a basement,” says Rudenok. “But what could we have done in any case? We were totally powerless ourselves.”

After the liberation, four buses set off to Khmelnytskyi Oblast, to the west, but many of the villagers who left on them came back again later. Rudenok says there is still a fear that Putin’s men will return, and that there has been a “steady nervousness” throughout the area ever since the enemy was driven out by the Ukrainian army.

At the end of June, a few days after our visit to Yahidne, Belarus-based Russian missiles are again fired at the nearby city of Chernihiv and the villages around it. Bombs fall on Kyiv, on Kharkiv, on a shopping mall in Kremenchuk. The Kremlin’s message is clear: the frontline is everywhere.

But things are moving forward: everywhere in the village people are building, polishing, hammering. Volunteers from the aid organisation Dobrobat have come to Yahidne from all over the country to help: a washing machine repairman from the Donetsk district, a carpenter from Dnipro. NGOs are sending doctors and psychologists. Julia Vertyenko and Ivan Podgul have accepted the offer of talking therapy. “It can’t do any harm to talk about what this has done to us,” Julia says.

And now? Ever since it happened there have been fierce, bitter fallings-out, in the street, between neighbours. Arguments about donations, arguments about which roof should be repaired first. A church aid organisation has driven a van up to the cultural centre, now in total ruins, and helpers are handing out bags containing oil, maize and flour. Women bicker, men shout, children push. Julia Vertyenko has got hold of two bags of food for her family and her father, and is carrying them home along the village street. “There’s been a lot of envy since it happened,” she says. “The atmosphere has been poisoned. For too long we saw too many terrible, intimate things about each other.” Does she hate the Russians for it? “Hate? No. But they took our health, destroyed our lives. It’s more that I despise them.”

In mid-June, the BBC’s Moscow correspondent Steve Rosenberg asked Russian Foreign Minister Sergei Lavrov about the Ukraine war in a long interview that covered, among other things, the crimes in Yahidne. Russian officials, too, had investigated the allegations against their soldiers, whom the Ukrainian side accuses of war crimes in the tiny village. According to the Kremlin, no wrongdoing was found. The wife of one of the soldiers from Tuva had also first told a Radio Liberty reporter who had contacted her via social media that her husband could not hurt a fly. She later denied that he had ever even been in Yahidne.

Rosenberg now asked Lavrov quite specifically: Holding up to 360 people, some of them children, elderly or disabled, in a basement for a month – was this “fighting the Nazis”?

At first, Lavrov dismissed the claim as fake news, but the interviewer pressed him further: Was everyone in Yahidnelying? Lavrov conceded that “Russia is not squeaky clean.” On the contrary: “Russia is what it is. And we are not ashamed to show who we are.” And it sounded as if he was proud of it.

Translation by Paula Kirby / Voxeurop.

Woman’s body, man’s medicine

Our starting point is an androcentric medicine that has investigated manifestations in men and extrapolated the results to women.

It was thought that reproductive health was the only differentiating characteristic, but the symptoms, treatments and recovery for the same disease might not be the same.The biological differences, which are often invisibilised, explain only part of the health inequalities, which are also conditioned by gender roles.

The following are some of the specific characteristics of women’s health

1. Mental health: From mixed bag to overmedication

More cases of depression and anxiety
Worse living and working conditions for women, double working days (particularly for less qualified workers), domestic and care work, guilt and perfectionism can all have an impact on women’s health. Women are more likely to experience mental health problems such as anxiety and depression, which affect almost twice as many women (13.7%) as men (7.4%). Moreover, one in three women says they feel emotional distress, while in men this figure is one in five.

“It’s a mixed bag. Anything that happens to a woman is attributed to her being anxious or overstressed, without taking into account her working or care conditions. A pill isn’t the solution. We have to change living and working conditions.”

Carme Valls, Endocrinologist and author of Mujeres Invisibles Para La Medicina 

More anxiolytics
Women are more likely to be sent away with a diagnosis of mental illness at an initial visit than men; in the latter, an organic cause is immediately suspected and additional tests are requested. This gender bias leads to overmedication in women: 85% of psychotropic medications are administered to women. This overdiagnosis can also render invisible physical diseases that are hidden behind an incorrect diagnosis of mental illness or psychosomatic symptoms because they might not fit the “normal pattern,” i.e. the male model.

The taboo of motherhood
Another area ignored by science is mental health and motherhood. One in four women experience some kind of mental health problem, some more severe than others, during pregnancy or in the postpartum period, and most of them are not treated. This is not helped by the fact that the postpartum and nurturing period is a lonely time for many women. Traumatic childbirth, a difficult pregnancy, childhood trauma or stressful situations can trigger postpartum depression and the most common symptoms are sadness, hopelessness, emotional changes, insomnia or difficulty bonding with the infant.

2. Cardiovascular disease: Heart attacks are mistaken for anxiety

Leading cause of death
Cardiovascular disease is the leading cause of death in women in Spain, ahead of breast cancer. While men experience more heart attacks and women more strokes and heart failure, women are twice as likely to die in the event of a heart attack. The mortality rate of myocardial infarction is 9% in men and 18% in women. There are various reasons for this. It takes women longer to go to the hospital and their symptoms are often mistaken for anxiety.

“Cardiovascular diseases are very well differentiated in men, but in women, the diagnosis is much less specific and less cautious than in men. Fewer tests are carried out, assuming ‘the chest pain must be anxiety’. No. At the very least an electrocardiogram, imaging study or stress test must be performed to rule out an organic cause.”

Antonia Sambola, Cardiologist at Vall D’Hebron Hospital and expert in women’s cardiovascular health

Delayed diagnosis
Women seek care later, downplaying their symptoms or putting the care of others before their own, and this leads to delayed diagnosis. The symptoms are also confusing at times. Chest pain is a symptom in 90% of women, but they also have other additional symptoms, which are more intense than in men, including nausea, vomiting, dizziness and headache. “They also have chest pain and shortness of breath, like men, but by the time women go to the doctor the chest pain has already passed because they are already in heart failure,” adds Sambola.

More research
Practitioners are calling for more emphasis on cardiovascular disease prevention as there are risk factors in women that are largely left unaddressed and that are closely related to pregnancy and childbirth, such as preeclampsia, gestational diabetes and premature birth. “Menopause also increases cardiovascular risk. Has that been explained? There isn’t enough information. We’re completely lost,” acknowledges Elisa Llurba, Head of the Gynaecology Department at Sant Pau Hospital. Practitioners also call for campaigns to promote self-care.

3. Breasts: Between aesthetics and pathology

Aesthetic pressure
Breasts have been used to sell everything from cars to perfumes, but we have rarely studied what they look like on the inside. The breast has not been studied from an anatomical or physiological perspective. “It has become trivialised as something which is aesthetic rather than functional, and we have gone from not knowing anything about breasts to knowing only their pathology, breast cancer,” says surgeon Maria Jesús Pla. Furthermore, the depiction of a perfect breast has failed to take into account the fact that they come in all shapes and sizes. “The mammary gland is neither seen nor explained. We don’t know how it works, but they do teach us how the liver and kidneys work. Most women don’t know what the raised bumps on the areola of the nipple are called,” adds breastfeeding expert Alba Padró.

Breastfeeding
Over 90% of women who give birth breastfeed their children in the first few days, a percentage that decreases as time passes. There are multiple reasons for this, ranging from insufficient leave from work to a lack of breastfeeding support.

“Healthcare professionals do not receive specific training on breastfeeding and the training they do receive is not enough. Much emphasis has been placed on the benefits, a chapter that has since been closed, but not on the solution to the problems. You would expect paediatricians to be trained in breastfeeding but they’re not, and this is the first reality check: breasts are essentially no one’s territory.”

Alba Padró, Cofounder of LactApp and IBCLC breastfeeding expert

Breast cancer
Approximately one in every eight women will develop breast cancer in their lifetime. It is the most common tumour in women worldwide and in Catalonia, it accounts for about 30% of the tumours affecting women. Most cases are diagnosed between the ages of 35 and 80, with the highest number of cases between the ages of 45 and 65. The disease also has an emotional impact that other cancers might not have, as it is a more visible organ and has sexual and aesthetic implications. The challenge for these patients is to return to their work and sexual life.

“Surgeons must be sensitive to the aesthetics of the breast because tumours here have special implications. Conservative surgery rates are very high, at over 75%, and when this isn’t possible, immediate reconstruction is performed. You shouldn’t end up with a line. But it’s also important to remember that a woman is more than just two breasts.”

Maria Jesús Pla, Breast surgeon at Bellvitge Hospital

Controversial mammograms
Survival rates have increased with the improvement in treatments, as this is a tumour that is subject to a lot of research and early detection through population screening. In Catalonia, mammograms are recommended between the ages of 50 and 69 every two years, not annually. Routine mammograms are not recommended in women under the age of 50 with no risk factors. The effectiveness of screening in women between the ages of 40 and 49 is a controversial debate. “The disease is less prevalent and mammograms are less effective. If population screening were to be extended, it has been said that it would be better to do so amongst women between the ages of 70 and 75,” explains Maria Jesús Pla.

4. Respiratory Disease: Conditions on the rise among women

Lung diseases
Respiratory diseases that were considered to be predominantly male conditions have risen among women due to the increase in smoking. This is the case for chronic obstructive pulmonary disease (COPD), which, according to a study by the Hospital del Mar, shows more symptoms in women: increased breathlessness, increased muscle involvement and more lesions than in men with equally severe disease. COPD is a disease that is underdiagnosed in women. According to Carme Valls, there is a tendency to diagnose women with asthma when in actual fact it is COPD. Practitioners believe it progresses differently not only because of the biological characteristics of sex but also because of the sociocultural characteristics of gender. Women with this disease have a worse quality of life.

Lung cancer
Lung cancer, which is the leading cause of cancer death, is also on the rise among women due to the increase in smoking. It has gone from being the fourth most common tumour among women in 2015 to the third, and it is expected to continue increasing in the coming years, overtaking breast cancer. Meanwhile, it is expected to become less common among men due to the decline in smoking.

“Lung cancer used to be considered a male disease and this has likely led women to be less cautious with smoking. Perhaps there should be gender-specific public health campaigns aimed at women and young girls.”

Enriqueta Felip, Head of the thoracic, head and neck cancer unit within the oncology department at Vall D’Hebron Hospital

Long COVID
There are people, mostly women, who have already had an acute coronavirus infection but continue to have symptoms six months later. These are generally young women, between the ages of 35 and 50, who have a wide range of fluctuating symptoms including headaches, extreme fatigue, tachycardia, muscle and joint pain, breathing difficulty and memory loss. This even occurs after having had a mild form of COVID. The symptoms are similar to those of chronic fatigue, a condition with which they also share preconceptions and a lack of understanding. Long COVID is thought to affect between 10% and 20% of patients. There has been a lack of information on this condition for months, which has led to underdetection and those affected have at times felt questioned by the healthcare system.

5. Reproductive system and sexuality: Invisbilised diseases and the medicalisation of physiological processes

Silenced disease
There are diseases that only affect women, such as endometriosis, for which there is a lack of investment and research because, as scientist Maria Montoya from the Spanish National Research Council (CSIC) ironically puts it, “they only affect 50% of the population.” Endometriosis is the gynaecological disease with the highest incidence: it affects at least 10% of women of reproductive age, but this figure could be higher as the condition is underdiagnosed. It is a chronic disease, and its best-known symptoms are pain during menstruation, pelvic pain and infertility. However, the pain has become socially normalised among women to the point that a diagnosis can take up to eight years.

Obstetric violence
The healthcare system has medicalised normal physiological processes in women, such as pregnancy, childbirth and menopause, by imposing a paternalistic approach: seven out of ten women say they have felt belittled during pregnancy or childbirth. However, women are becoming increasingly informed and empowered and are pushing for a change in the care model, demanding more humanised and less medicalised care. “Depending on how we deal with childbirth, we can leave a young, healthy woman with a chronic condition, and the healthcare system and practitioners must be held accountable for this,” says Maria Llavoré, a midwife at Sant Pau Hospital.

“We are being self-critical. There is an element of unconscious structural violence, and the sooner we accept this, the sooner we can fix it. There’s no point in becoming bogged down in whether or not to call it obstetric violence. We can and must do better.”

Elena Carreras, Head of obstetrics at Vall D’Hebron Hospital

The caesarean section rate in Catalonia (27.4%) is still double the WHO’s recommended rate (15%) and is, together with inductions, an indicator of obstetric quality. Episiotomies, the Kristeller manoeuvre and overmedication are just some of the practices that have been criticised. But infantilising a woman or disregarding her consent is also considered to be obstetric violence. This respect applies not only to childbirth but also to miscarriages, abortions and infertility or assisted reproduction procedures. The Ministry of Equality, like the Catalan law on gender-based violence before it, plans to include obstetric violence as a form of violence against women in the reform of the abortion law. The Catalan Society of Obstetrics and Gynaecology and the four Catalan medical associations have recently acknowledged that obstetric violence exists and are calling for a debate, even though they have admitted that the term makes them uncomfortable.

Sexuality
Female sexuality has been invisibilised or is full of taboos and stereotypes, and pleasure and the female body have long been an unknown reality, even to women themselves. We have not received sex education, and the education we have received has perpetuated sexist models. However, more and more women are reclaiming their pleasure while making sexual and gender diversity visible beyond binarism. Beyond this, consultations related to sexuality are increasing because issues such as pain during sex and anorgasmia are no longer normalised.

“The level of ignorance about women’s bodies is appalling, even among some practitioners. The clitoris hasn’t been studied, it’s unknown, it’s not drawn and it doesn’t appear in photos. If we don’t talk about it, it doesn’t exist. If women don’t know where it is, they don’t know where to stimulate it.”

Maria Llavoré, Midwife at Sant Pau Hospital

Pelvic floor
Almost half of women (46%) have one or more pelvic floor disorders, such as urinary or bowel incontinence or pelvic organ prolapse. This has a major impact on their quality of life. Pregnancy and childbirth are key factors, but there are also other causes such as high-impact sport, constipation, ageing and menopause. Until recently, it was considered that, since no one died, it was simply accepted, but practitioners are calling for check-ups and treatment of the pelvic floor to be routine practice in the healthcare system and for there to be a prevention strategy: the pelvic floor should be discussed from an early age, and training should be provided in schools. Teaching how to do Kegel exercises should be like teaching them how to brush their teeth.

Gynaecological cancers
These cancers begin in the female reproductive system. They can affect the cervix (the neck of the uterus), ovaries, uterus, vagina and vulva. The risk increases with age and some gynaecological cancers are caused by the human papillomavirus (HPV). Girls and women between the ages of 9 and 26 can be vaccinated against HPV, and vaccination is recommended before becoming sexually active. If the vaccine were less expensive, practitioners believe that it would also be advisable to administer it to boys.

6. Joints: Women’s pain: an unresolved issue

Chronic pain
One in three women reports having pain or discomfort, while in men this figure is one in five. Women are more likely to experience chronic pain as most diseases that cause muscle or joint pain are more common in women. “Chronic pain is one of medicine’s unresolved issues,” says endocrinologist Carme Valls. Experts are calling for it to be addressed as a public health problem.

“It is important for healthcare professionals to consider not only the disease but also what comes before it: the living conditions that may have led to these disorders. Including the gender perspective is an improvement in care. You can’t take care of people’s health without taking into account their living conditions, which are very different for men and women.”

Lucía Artazcoz, Director of the Public Health Observatory of the Barcelona Public Health Agency

Physical and mental overload
Rheumatic and musculoskeletal diseases such as arthritis, osteoarthritis, back pain, osteoporosis and fibromyalgia are common causes for consultation in primary care. It is estimated that these conditions take up around 30% of primary care physicians’ time. Valls states in her text that the pain of many women is often silenced or rendered invisible with psychotropic medications and that studies do not take into account the physical and mental overload experienced by women in their lives and workplaces.

Fibromyalgia
Fibromyalgia is characterised by chronic pain throughout the body, particularly in the muscles and joints of the back and limbs, and hypersensitivity to pain, noise, smells and light. It can also be accompanied by cognitive and sleep disorders, gastrointestinal disorders and fatigue. It is a disease that occurs more frequently among women (4.2% of women and 0.2% of men in Spain), its origin is unknown and, in many cases, it is debilitating. Those affected can spend years going from one consultation to the next until eventually reaching the diagnosis of a highly stigmatised disease.

“The prevalence among women is huge. There are no doubt hormonal and pain perception factors involved, but we’re not really sure about this. What we do know is that the pain exists and that they’re not making it up. There are some very hard-hitting cases. What is the cause? That is up for debate, but the pain is real.”

Josep Blanch, Head of the Rheumatology Department at Hospital Del Mar

It is not without controversy. Carme Valls wrote in her text that “all kinds of muscle pain for which no explanation could be found have been attributed to this disease, with no objective evidence.” She questions the fact that it is treated with psychotropic medications and believes that more research studies are needed for women diagnosed with fibromyalgia.

7. Autoimmune Diseases: Complex diseases that affect women the most

Attacked by our own defences
Autoimmune diseases are those in which the immune system attacks the body’s own organs. It is estimated that one in ten people in Catalonia has an autoimmune disease. Some only attack specific organs, such as autoimmune thyroiditis, the most common form, which affects the thyroid gland, while other systemic forms involve a generalised attack. Sjögren’s syndrome is the most prevalent of these, but lupus is the most paradigmatic.

More women affected
Two-thirds of those affected are women and in some specific conditions this proportion is even larger: for every man with lupus there are nine women, and for every man with Sjögren’s syndrome there are six women. There are multiple reasons for this, but female sex hormones are a major factor, and “periods in which they are more active, from puberty until menopause” is when the most disease onsets and the most flare-ups occur.

“In the case of lupus, treating the kidney or nervous system is just as important as treating reproductive issues or skin lesions on the face, something that perhaps would not be as important for a man.”

Ricard Cervera, Head of Autoimmune Diseases at Clinic Hospital

Pregnancy
It also affects women of childbearing age, which has special implications. Forty years ago it was said that women with lupus would not be able to have children as they would miscarry and the disease would flare-up. Nowadays, they have similar fertility to the general population and pregnancies are more closely monitored.

The other bias
In this case, it is men who may experience a delay in diagnosis because, in theory, doctors find it hard to believe that a man might have lupus, for example. But when they do have it, it is more severe.

8. Research and Drugs: The effect of excluding women from clinical trials

Clinical trials
For decades there has been gender bias in clinical research. Due to hormonal changes and for safety reasons, women are often not included in clinical trials and this exclusion has led to gaps in knowledge. This is also the case for studies with non-human animals, in which two-thirds are male. When women have been included in trials, the results have not been segregated, meaning that the results are applied equally to both men and women, even though the participation of women is lower. “When you don’t segregate by sex, you don’t know the situation for either men or women, or the specific characteristics of each of them, and that’s bad science,” notes Lucía Artazcoz. But this is changing, partly thanks to COVID.

“Men and women react differently to the coronavirus and this must be taken into account. The disease is teaching us not to treat patients as a homogeneous entity and we can all benefit from this, as it enables us to adjust treatments or medication doses.”

Maria Montoya, Head of the viral immunology group at the Margarita Salas Centre for Biological research of the Spanish National Research Council (CSIC)

Adverse reactions
Excluding women from clinical trials means that adverse drug reactions are either unknown or take years to be noticed and for measures to be taken. Eight out of ten drugs withdrawn from the market in the USA between 1997 and 2000 had greater health risks for women than for men. As an example, statins, a widely used drug, have been shown to have more adverse effects on women.

The way in which the drug is metabolised or how we benefit from the drug is different due to metabolic and genetic history as well as hormonal issues. Again, there is little information available, or incomplete information, regarding the adverse effects of drugs on pregnant and breastfeeding women, and the coronavirus vaccine is an example of this. The information on COVID in pregnant women has been contradictory since the start of the pandemic.

“In oncology, chemotherapy is administered according to body surface area and this does not take into account the differences in body composition between the sexes. The patient’s sex also affects the absorption, distribution, metabolisation and excretion of drugs.”

Dorothea Wagner, Head of the Gastrointestinal Cancer Unit at Lausanne University Hospital

Dosage
It has been assumed that if a dose is appropriate for a man, it is also appropriate for a woman, but men and women are different in many respects, one of which is body mass. For example, men have 80% fat-free body mass and women have 65%, and this affects the way in which we metabolise a drug.

In oncology, “the same drug may be less effective or ineffective in one sex compared to the other, and we might have to use different drugs depending on whether the patient is a man or a woman,” Wagner adds. But this also poses a challenge because sex is not the only factor involved in the variability of responses to a drug. To this end, practitioners are calling for more clinical trials and the inclusion of non-binary genders, too.

Contraceptive pills
To downplay the risks of thrombosis of the AstraZeneca vaccine, they were compared to those of contraceptive pills, which are more common, and no one was surprised. Without criminalising contraceptives, which were a liberation for women, women are demanding that they be provided with full information about side effects. The risk of thrombosis is estimated to be 1 to 10 in every 10,000 women, making it a rare adverse effect, but we must be aware of the factors that may favour it, such as family history, being over 35, smoking, excess weight and hypertension. The other most common side effects include mood disorders, reduced libido, migraines, nausea and fluid retention. They are also prescribed for other conditions such as polycystic ovaries and endometriosis, and this may lead to other possible solutions not being investigated.

“Over time, instead of investigating any small changes in the regularity of the menstrual cycle or in the intensity of menstruation to diagnose the causes, they have been initially treated with normal contraceptives.”

Carme Valls, Endocrinologist and author of Mujeres Invisibles Para la Medicina 

The pills are said to “regulate the cycle,” but in actual fact they inhibit it. With contraceptives, there is no real bleeding because there is no ovulation. It is fictitious bleeding because during the break there is a sudden hormonal change. This is meant to mimic the female cycle because it is a way of reassuring women, but it is not really menstruation, although many women do not know this. “Why the male contraceptive pill has never been marketed is a matter for further reflection,” writes Valls. As for the relationship between contraceptives and breast cancer, there is much controversy and there are no conclusive studies, although Pla assures that “it has not been proven to be a risk factor.”

Menopause
On the other hand, hormone replacement therapy (HRT) with oestrogens and progestin, which is used to alleviate some of the effects of the menopause, such as vaginal dryness and hot flushes, has been linked to an increased risk of breast cancer and women are advised against receiving it for over five years. According to a 2004 study, 43% of women who were prescribed this were unaware of the risks involved in its use.

“Menopause research is needed. I have found very few studies on this and every practitioner has different answers. Natural or artificial methods? There is no clear evidence. We’re in limbo. Have women been asked what concerns they have about this stage? Because the needs of women nowadays are not the same as 25 years ago.”

Elisa Llurba, Director of the Gynaecology and Obstetrics Department at Sant Pau Hospital

9. Conclusion
No more, no less.
Just different

The paradox when we talk about gender and health is that women live longer but have a poorer quality of life. “They have diseases that don’t kill them, but they don’t let them live,” according to public health specialist Lucía Artazcoz. Socialisation and gender roles condition our health. Primary care practitioners see this on a daily basis. “When you ask women what makes them suffer, you see that we all have a shared experience that has an impact on our health,” explains Meritxell Sánchez-Amat, a general practitioner at Besòs Primary Care Centre, who is calling for more time per patient and more home visits to allow for a psychosocial approach, as “drugs are the quick and easy answer”. She believes that introducing the gender variable would help avoid medicalisation and overdiagnosis.

“But it’s difficult. It means going against the tide. As practitioners, we are part of this patriarchal society, and as a healthcare institution we are not self-critical.”

Meritxell Sánchez-Amat, General Practitioner and President of the Catalan Forum for Primary Care (FOCAP)

Gender-sensitive medicine and research are also closely related to the fact that there are more women in leadership and decision-making positions. “It is essential to change the way we look at things,” says cardiologist Antonia Sambola. Gynaecologist Elisa Llurba, who is calling for the Catalan public broadcaster to dedicate an edition of its annual TV3 telethon exclusively to women’s health, admits that she was previously unaware of this gender bias. “I didn’t see it until now, because I considered many practices to be normal and I hadn’t understood them from that perspective.” According to fellow gynaecologist Elena Carreras, “gender bias in medicine exists, and as soon as you become aware of it, it’s no longer an option to do nothing.” This benefits men as well as women, “because this outlook makes us question whether we are doing it right.” While women are overdiagnosed with mental health problems, men are underdiagnosed with depression, fibromyalgia and osteoporosis, which are more common in women. This approach should also be taken on at universities and in the continuing education of healthcare professionals.

Including sex is not enough
To break this bias, it is not enough to include the sex variable alone. We must also include that of gender. “We just assume that a patient is male or female, but there are individuals who are intersex. We also assume that patients are cisgender – when gender identity matches the sex assigned at birth – but we must move away from assuming and start asking. We need to be more empathetic with gender identities because this strengthens the science,” said Ewelina Biskup, Professor at the Shanghai University of Medicine and Science, at a conference on gender-sensitive medicine held at Vall d’Hebron Hospital. This is the first hospital to have created a health and gender committee, and the Department of Health plans to extend this to all centres to incorporate this approach into healthcare practice. As Artazcoz says, “we are still a long way from gender-sensitive medicine”, and the first step is to stop using men as a benchmark. “Women’s health is no more and no less than men’s health. It’s just different.”