"At least with the diagnosis, they believe me now": androcentric medicine, 4 women, 4 stories
Four women recount their experiences with endometriosis, fibromyalgia, lipedema and obstetric violence
BarcelonaGender bias in medicine translates into invisible diseases, such as endometriosis, lipedema or fibromyalgia, suffered by women like Idoia, Marian and Gisela. But also the medicalisation of normal physiological processes such as pregnancy or childbirth, as Cristina relates. The four of them raise their voices and demand that research and medicine also put women at the centre.
Cristina Fernández Victory
"Don't you know how to give birth to your child?" Verbal violence is also obstetric violence
It makes her angry that there are doctors who deny obstetric violence, because by denying it, she says, they are denying what she and other women have lived through when giving birth. It has been five years since the birth of her son and tears still come to her eyes when she relives it. Cristina Fernández Victory had two births. One that began at home and progressed at her own pace and another that began when she walked through the doors of the private clinic where she thought she could have the most natural and least medicalised birth possible. But back then she didn't have the information she has now. For a long time she and her partner have blamed themselves for not having chosen the right place to give birth or for not having defended their rights. "But it's not our responsibility, health professionals are absolving themselves of their real responsibility. In any other medical discipline it would be unthinkable that you would have to be informed so that they don't do certain interventions". She is aware that childbirth may not be as you had imagined and that there is a part of it that cannot be controlled, but she regrets that people start from the idea that it is "an illness or a danger" because "childbirth -she insists- is a natural physiological act".
In the clinic she felt "infantilised" when she said she wanted to give birth without an epidural. And they belittled her experience, as when she told them that dilation was going very fast and she was close to expulsion. She missed support and accompaniment in the process of dilation and asked for an epidural. "I was alone and I broke down emotionally". She ended up giving birth with oxytocin, episiotomy, suction cup to get her son out and the Kristeller manoeuvre to bring him down, a practice that is not recommended by scientific societies but is still practised. However, this was not what hurt her the most. "You don't know how to push, don't you know how to give birth to your child? This sentence hurt me a lot. What does this mean? They had denied my sensations and the epidural had made me feel nothing. They told me to "push", but I didn't feel anything, I could only use my abdominal muscles, which was the only place where I still had sensation". Verbal violence, says Cristina, is also obstetric violence. "This sentence, pronounced before Kristeller's maneuver, is what gives them the power to get on top of me. It left me in a state of shock and I didn't push him away", she recalls.
When her son was born, weighing 2,450 grams, they took him away and she couldn't make the first skin-to-skin contact. It wasn't until they got home that she had the feeling of finally being in "a safe place" and she focused on breastfeeding. "I thought another birth would make the situation better but there hasn't been another baby". A second child would have been born at home. The term obstetric violence makes some of the medical establishment uncomfortable. "Because it makes women defensive", says Cristina, "but you have to earn their trust". In fact, she notes that many of these practices have become so normalised that it has made her doubt whether what she experienced is obstetric violence.
"For years doctors only told me to exercise and diet"
The day that on Instagram she saw some legs, Marian Campello (Elche, 34 years old) thought: "It's me!" It was 2020 and she got sick of googling to confirm that her legs and disproportionate hips were not because of her "strong build". She was still a few months away from being diagnosed with lipedema, a pathological concentration of fat in the extremities that affects only women and for which there is no conclusive research on whether there is a hormonal, lymphatic or vascular cause behind it. Under-diagnosed, it is confused with obesity or cellulite, despite the fact that, according to the WHO, it is a disease that affects between 4% and 10% of women and is often "treated as if it were a question of aesthetics and not of health".
Until she was able to name it, Campello spent half her life hearing about exercise and dieting, but the fat continued to concentrate in her hips and legs. The first symptoms appeared at puberty, almost at the same time as the strong migraines and some supposed polycystic ovaries that years later were already normal but that made her take contraceptives for a long time and even antidepressants that left her "like a dirty rag", always craving to eat: "I'm sure that all this has harmed me".
Luckily, she remembers that she had no complexes, beyond the anger of not finding pants in fashion shops. That's how it went for years, until the appearance of hip pain. "Then I was told it was a problem of poor circulation". And she got all the massages she could. And more exercise and diets. A little over a year ago, the concentration of fat appeared in her arms. "It was clear to me that something wasn't right", she recalls, even though doctors told her that it was just her imagination. "You run out of strength from so much accumulated frustration".
From internet research, she found other sick people like herself and from there she went to Dr. José Luis Simarro Blasco's office in Madrid. "I know I will not be cured", she says, and indicates that she has only two solutions within reach. On the one hand, surgical operations to remove the fat from the legs and, on the other hand, a conservative treatment of punctures to suck this fat. In either method, the Social Security does not pay for the treatment and she hopes that with the diagnosis at least they will be able to subsidise the very expensive restraining bands. She starts in September.
"At least now, with the diagnosis of fibromyalgia, they believe me when I say I'm in pain"
Fifteen years passed from the first symptom - lower back pain at the end of her first daughter's pregnancy - to the diagnosis of fibromyalgia. Along the way, a pilgrimage through public and private doctors' offices, two children more and a diagnosis of Sjögren's syndrome - an autoimmune disease - and the suspicion of another. Gisela Soroka has been living with pain and symptoms that have worsened over time and now force her to spend many hours in bed. The joint pain is constant and the muscle pain comes and goes, but she also has tachycardia, for which she is taking medication, and a mental fog that makes it difficult for her to concentrate and conditions her work, and this is "harder" than the physical pain. However, she acknowledges that the pain causes her "a significant lack of patience". "And nine years ago I started taking antidepressants to endure what I live, since it impacts the mood", she acknowledges. And she says this with a smile. "Being positive and taking everything in with humour is part of me, but I used to be more optimistic, and I thought that one day this would end". Gisela is now 41 years old and is beginning to feel the weight of age on her body, she says.
She still remembers the beginnings of the disease. Her first daughter had already been born and she felt painful, tired, with back pain and no energy. "I saw other mothers regaining their energy and not me. But they told me that this was because I was very thin and had no muscle mass. She underwent several tests but they couldn't find any answers. Still undiagnosed, she had her second daughter. And the doctors attributed the pain in her joints to the fact that she was a working mother. At that time she was still working part-time. "We mothers don't get any help, we are alone and on top of that we are blamed for being alone". Now she is self-employed in digital marketing and can adapt her work to suit her needs.
She has felt "misunderstood" by healthcare professionals. "I feel like I have to fight for everything, such as being tested or referred to other professionals", and she laments that no professional has the full picture: "It's the same body but no one talks to anyone". She has noticed the gender bias. "At some point I thought it was because I wasn't from here. But I think it has more to do with being a woman than being an immigrant", she says. Gisela and her husband came from her native Argentina when she was 22 and their three children were born here.
During all these years she has read and researched a lot about the symptoms and considers fibromyalgia "is a catch-all". "But I'd rather be diagnosed with this than nothing. At least now they believe me when I say I'm in pain". "What surprises me is that they put a label on it and no longer investigate where this chronic pain comes from", she laments.
Fibromyalgia is a misunderstood disease because, at first glance, patients seem to be fine. Gisela is grateful, however, that her circle, and especially her husband, have always respected her. The disease has not had an impact on the couple's relationship, but it has affected her motherhood, especially with her youngest child, who is five years old. "He is very active and I can't adapt to his demands and his reference figure is his father", she explains. She would like to be "a more present mother": "I know that my children will remember me in bed and this hurts me".
"I always thought I had a painful period"
The memory of the first period and the subsequent ones, she explains, is that of having an "infinite pain" that had even left her on the floor and fainted. Literally. When she was very young, this unbearable pain made her take strong painkillers and anti-inflammatory drugs, a remedy that everyone saw as the lesser evil, despite the fact that it made her go to school or university half groggy. "I always thought that I had had my period with pain", like her mother and grandmother, says Idoia Ruiz. Like a lottery.
It wasn't until she was 35 years old when, after having a very painful period, one day the gynaecologist told her that the ultrasound showed a small cyst on her left ovary which, in the absence of further tests, could be endometriosis, a disorder in women of childbearing age in which the tissue that covers the inside of the uterus grows on the outside and causes intense pain.
Ruiz recalls that her reaction was one of disbelief because until then no one had ever even hinted to her that she was sick and she had learned to live with medication and pain to the point, she says, that her threshold for enduring it is very high. She had also assumed that one or two days a month she would be so sick that she wouldn't be able to make her scheduled plans. The treatment of endometriosis is long and is done hormonally, with contraceptives, or surgically, to remove the nodules, and in the most severe cases, with a hysterectomy (removal of the uterus). Ruiz's operation consisted of removing the cyst from the ovary, but the gynecologist did not explain any of the potential effects of doing so.
The worst part was discovering that endometriosis could be an obstacle to becoming a mother, a desire she wanted to fulfill later but that the diagnosis made one of her top priorities in life. Without a partner, she went to an assisted reproduction clinic, frightened by the gynecological report that she had a low ovarian reserve and follicles. "They told me that the best thing to do was to get pregnant in the next six months", she recalls, but a health setback made it advisable to put the brakes on and, during this time, Ruiz met up with an old friend, with the good fortune that after seven months she was pregnant. The first of the couple's two daughters.
"Mine is a story that has the positive side that motherhood is possible", she says, while complaining that, although it has an incidence of between 10 and 15%, endometriosis is a poorly researched disease with contraceptive treatments at a high cost to women's bodies. Now her periods are "just ibuprofen", she says, but she knows that endometriosis can come back. Without menstrual pain, she confesses that she notices the emotional effects more, as if her whole body used to focus solely on the physical pain.